Tja december 2013 lr by WorldWeb Group

Transplant Journal of Australasia Volume 22 No 3 December 2013

“Write your goals in concrete, and your plans in sand.” –

Anonymous

O f f i c i a l j o u r n a l o f t h e Tr a n s p l a n t N u r s e s ’ A s s o c i a t i o n I n c .

TRANSPLANT JOURNAL OF AUSTRALASIA

CO NTE NTS Journal of the Transplant Nurses’ Association Inc. NATIONAL EXECUTIVE President Claire West Tel (02) 9515 7274 Fax (02) 9515 3606 Email president@tna.asn.au Secretary Libby John Tel (08) 8204 5819 Fax (08) 8204 6959 Email secretary@tna.asn.au

TNA National Executive report

Editorial Board

Editorial 3 Guest editorial Then and now: 24 years in transplant coordination Anne Griffiths

Articles

Secretariat Shoma Mittra Tel 0433 558 125 Email secretariat@tna.asn.au

The Australian paired Kidney eXchange (AKX) program — the first three years Claudia Woodroffe and Paolo Ferrari

Treasurer Julie Pavlovic Tel (03) 9496 3972 Fax (03) 9496 3487 Email treasurer@tna.asn.au

“You can’t stay here!” Transition from paediatric to adult health care management for liver transplant recipients

Vicki Jermyn

Do psychosocial factors influence return to employment following liver transplantation?

Bruce Maguire, Vere Berger and Mary Joyce

Editor Tracey Mackay Email TJAeditor@tna.asn.au ISSN 1323-5109 Published by the Transplant Nurses’ Association Inc. All correspondence to: Shoma Mittra, TNA Secretariat

ATCA report

Diary dates

TNA Conference Report

2013 TNA Conference Winning Abstracts

State Executive

Published by Cambridge Publishing – a division of Cambridge Media 10 Walters Drive Osborne Park, WA 6017 Tel (08) 6314 5222 Fax (08) 6314 5299 Web www.cambridgemedia.com.au Copy Editor Rachel Hoare Graphic Designer Gordon McDade Disclaimer: Neither the Transplant Nurses’ Association nor the Editorial Board of the TJA assumes responsibility for the opinions expressed by the authors. The description of products and acceptance of advertising does not indicate or imply endorsement by the Association. Our gratitude and special thanks to Novartis Pharmaceuticals Australia Pty Ltd and Jannsen Cilag, all of which support the TNA and its activities.

Transplant Nurses’ Association website:

www.tna.asn.au

JOURNAL SUBMISSION DETAILS FOR 2 0 1 3 For 2013 the Transplant Journal of Australasia (TJA) will be produced in March, July and December. Papers are submitted to the Editorial Board, which provides feedback to the author prior to publishing. All papers will be sub-edited to journal style before publication — please refer to the Guidelines for Authors for more details on this and for detailed submission information.

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

T N A N AT I O N A L E X E C U T I V E R E P O R T Renal Transplant Coordinator from Melbourne. We look forward to working with Chris on the national executive.

The 22nd annual conference has now come and gone. Thank you to the NSW team for organising a fantastic conference in Sydney. We have received great feedback and look forward to the conference in Perth next year. We also held the Annual General Meeting at the conference. Thanks to those members that attended. Our projects and objectives for next year will be in the 2014 Action Plan which will be available on the website shortly. There will only

Claire West

be one scholarship round next year which will be in June. If you are planning on attending the TNA conference in Perth or wish to apply for another scholarship please plan ahead and keep an eye on the website and Facebook page for details and reminders. Congratulations to Chris Ellis who was elected into the position of President Elect. Chris will commence this role immediately and then move to the President position next October when my term concludes. Chris is a well respected

We are pleased to announce that TNA members now have free access to the online Transplant Library via the TNA website. The Transplant Library is an online resource providing high quality evidence-based information on all aspects of solid organ transplantation. The Transplant Library is updated every 2 weeks with new Randomised Controlled Trials, and every 4 weeks with new systematic reviews.

Our Facebook page now has over 160 ‘Likes’. Please encourage your colleagues to ‘Like’ our page to access up to date information on local activities and the next conference. If you have any topics or suggestions for posts please email me at president@tna.asn.au. On behalf of the National Executive I would like to wish all our members a safe and happy festive season. Claire West National President

2014 TNA scholarship application deadline: 5pm on 20th June 2014 Please note that due to financial constraints there will only be one scholarship round in 2014. All eligible applications will be reviewed on 24th June 2014. Scholarship application forms and submission guidelines can be down loaded from the TNA web site www.tna.asn.au Scholarship enquiries can be directed to the TNA National Secretary secretary@tna.asn.au

Editorial Board

Michelle Harkess Heart/Lung Transplant

Member

NSW

mharkess@stvincents.com.au

Tracey Hughes Liver Transplant

Member

VIC

tracey.hughes@austin.org.au

Tracey Mackay Nurse Donation Specialist

Editor

VIC

TJAeditor@tna.asn.au

Tracy McConnell-Henry Nurse Donation Specialist

Member

VIC

tracy.mcconnell-henry@monash.edu

Nick Nuttall Eye Bank

Member

QLD

nichalas_nuttall@health.qld.gov.au

Catherine O’Driscoll CNC, Surgery

Member

catherine.o’driscoll@health.wa.gov.au

Myra Sgorbini Donor Coordinator

Member

NSW

myra.sgorbini@sswahs.nsw.gov.au

Shoma Mittra TNA Secretariat

Secretariat

secretariat@tna.asn.au

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

EDITORIAL “Write your goals in concrete, and your plans in sand.” — Anonymous Welcome to the final TJA for 2013. It has been another long, but productive year for organ donation and transplant services. There has been a 22% increase in organ donation (January– October 2013) so far this year, compared to 2012.

Australia. This resilience can be identified in the patients, dedication of the staff and of the process of the program itself. Vicki Jermyn describes her young post-liver transplant patients as resilient, as they transition from the security of their paediatric hospital environment to the complex world of adult institutions. These young people are required to develop and demonstrate a number of mature and resilient behaviours, which allows them to successfully transition from one institution to the other.

One sure measure of doing great work is having moments during the year, when you ponder … it’s all too hard, too demanding, too complicated Tracey Mackay and too overwhelming — I would like to give up now! Knowing that all this is true, we show our resilience when we decide to take that next step, the deep In the third article, Bruce Maguire, Vere Berger and Mary breath or pick ourselves up, brush off and move forward. Joyce from Sir Charles Gairdner Hospital, WA, identify Using a technical definition of the above scenario, resilience and discuss the results of their research. Part of this article is described as a property of a material that allows it to return demonstrates the resilience of post-liver transplant recipients to its original shape after being manipulated, deformed as they contemplate returning to the workforce. or bent out of shape. When the term is used in reference And on the subject of resilience, later this year, Ms Anne to people, resilience describes the quality of being able to Griffiths, heart/lung transplant coordinator at The Alfred ‘bounce back’, adapt or return to their norm after facing hospital, Victoria, will resign her position after 24 years. complexities or adversity. Anne is the embodiment of resilience! I asked Anne to write Being resilient doesn’t mean that we go through life without the guest editorial for this edition, to recall the early days, experiencing stress or pain. People demonstrate grief, to share her stories of hope and despair as the heart/lung sadness, anger, and a wide range of other emotions after transplant program developed into the outstanding and suffering through adversity and/or loss. The path to resilience successful life-saving program that it is today. Thanks to lies in working through these emotions and effects of stress the Alfred team for providing us with great photos of Anne and difficult events. Resilience is not something that you’re in her role as transplant coordinator. Anne, on behalf of the born with. This characteristic of one’s personality develops as Transplant Nurses’ Association, I would like to congratulate you mature and gain knowledge and self-management skills. you on your contribution to transplant medicine and wish Resilience also comes from supportive relationships with you well for your deserved years of retirement. parents, peers and others, as well as from the cultural beliefs I hope everyone enjoyed the TNA conference held in Sydney. and traditions that help people cope with the inevitable I have included a report and photos! Yes, be careful — there difficulties in life. Resilience can be found in a variety of is always a camera ready to snap a shot of transplant nurses behaviours, thoughts, and actions that can be learned and behaving badly … no, no, I mean having a good time! developed across the life span. Resilience, like bamboo, takes two to three years to establish its root system, during which time very little bamboo growth happens ‘up top’. But once the root system is in place, the growth is extraordinary — it can shoot up more than 20 meters in less than four months (Paul Shrimpling, 2010). We can be driving so hard to get things done that we can miss the importance of investing fully in our root system. The cost of that is being fragile, less solid, not as well grounded. The challenge is that our root system is often the less sexy part of what we do. It is systems, relationships, processes. It’s also clarity about who we are, what we’re good at, what we’re focusing upon, what matters (Paul Shrimpling, 2010). In this edition of the TJA, the articles describe a variety of situations where resilience is tested. Claudia Woodroffe and Paolo Ferrari demonstrate the resilience of the Paired Kidney Exchange program in Volume 22 Number 3 – December 2013

In the last edition, Mr Peter Williams wrote the guest editorial describing his journey on the renal transplant waiting list, his accomplishments and his message of healthy lifestyle to other, fellow pre-transplant patients. I would like to report that Peter has recently received the gift of a healthy, new kidney. I wish him well. I would also like to apologise to Ms Kylie Turner (RN, BNsg, Grad Cert in Renal Nursing), for inadvertently leaving her contribution unacknowledged. I am sorry. Kylie’s contribution to the publication should have been acknowledged in the article written by Tania Burns, ‘Waiting for a kidney transplant in Australia — latest trends’. Thank you, Kylie. On behalf of the Transplant Nurses’ Association, the TJA Editorial Board and myself, I thank those authors who have contributed to this educational publication in 2013, and wish you all a happy and healthy holiday season. Finally, I will leave you with the words of Muhammad Ali: Inside of a ring or out, ain’t nothing wrong with going down. It’s staying down that’s wrong. 3

PBS Information: Section 100 Public Hospital Authority Required (STREAMLINED Authority) and Private Hospital Authority Required: initiation, stabilisation and review of therapy. Section 85 Authority Required: maintenance therapy. Refer to PBS Schedule for full authority information.

See approved Product Information before prescribing. Approved Product Information available on request or via www.novartis.com.au/products_healthcare.html. Please note change(s) in Product Information in italics. CERTICAN (everolimus): Indication: Prophylaxis of organ rejection in adult patients at mild to moderate immunological risk receiving an allogeneic renal or cardiac transplant and in adult patients receiving an allogeneic hepatic transplant (see Precautions). Dosage: Recommended general daily dose is 1.5 mg administered twice daily (0.75 mg bid) for general kidney and heart transplant population, administered as soon as possible after transplantation. The dose of 1.0 mg twice a day is recommended for the hepatic transplant population with the initial dose approximately 4 weeks after transplantation.* Patients with mild to moderate hepatic impairment should be carefully monitored; dose reduction may be necessary in those patients. Routine Certican whole blood therapeutic drug level monitoring is recommended. Very limited experience in children. See full Product Information before prescribing. Contraindications: Hypersensitivity to everolimus, sirolimus or to any of the excipients. Precautions: • In renal and cardiac transplantation, Certican should be used in combination with cyclosporine microemulsion and corticosteroids. In hepatic transplantation, Certican should be used in combination with tacrolimus and corticosteroids.* • Caution is advised with the use of thymoglobulin (rabbit anti-thymocyte globulin) induction and the Certican/ cyclosporin/steroid regimen. • Increased risk of developing lymphomas and other malignancies, particularly of the skin. • Oversuppression of the immune system with increased susceptibility to infections, especially infections with opportunistic pathogens (bacterial, fungal, viral, protozoal) which can include BK virus-associated nephropathy which can lead to kidney graft loss and the potentially fatal JC virus-associated progressive multiple leukoencephalopathy (PML). • Patients should be monitored for hyperlipidaemia. • Angioedema has been observed with Certican, in the majority of cases reported, patients were receiving ACE inhibitors as co-medication. • Proteinuria is increased in transplant recipients and may increase in severity when Certican is substituted for a calcineurin inhibitor in a maintenance therapy renal transplant patient with pre-existing mild proteinuria. • Reduced doses of cyclosporin are required for use in combination with Certican in order to avoid renal dysfunction. Regular monitoring of blood drug levels (everolimus and cyclosporin), proteinuria and renal function is recommended. • Co-administration of everolimus with known strong CYP3A4 inhibitors and inducers is not recommended unless the benefit outweighs the risk. • Increased risk of kidney arterial and venous thrombosis, resulting in graft loss, mostly within the first 30 days post- transplantation. • Certican, like other mTOR inhibitors, can impair healing increasing the occurrence of post- transplant complications. Lymphocele is the most frequently reported such event in renal transplant recipients and tends to be more frequent in patients with higher body mass index. The frequency of pericardial and pleural effusion is increased in cardiac transplant recipients. • The concomitant administration of Certican with a calcineurin inhibitor (CNI) may increase the risk of CNI-induced haemolytic uraemic syndrome/thrombotic thrombocytopenic purpura/thrombotic microangiopathy. • Cases of interstitial lung disease, some fatal, have been reported with Certican. Adjustment of treatment regimen including Certican discontinuation if drug induced interstitial lung disease is diagnosed. • Certican may increase the risk of new-onset diabetes mellitus. Blood glucose concentrations should be monitored closely in patients treated with Certican. • There are literature reports of reversible azoospermia and oligospermia in patients treated with mTOR inhibitors. Potential risk for male infertility with prolonged Certican therapy. • Excipients: Patients with rare hereditary problems of galactose intolerance, severe lactase deficiency or glucose-galactose malabsorption should not take this medicine. • Women of childbearing potential: Effective contraception must be used. Should not be used during pregnancy unless clearly necessary and when breastfeeding. Interactions: • Caution should be exercised when co-administering everolimus with CYP3A4- and CYP2D6-substrates having a narrow therapeutic index. • Caution with concomitant use with rifampicin, rifabutin or ketoconazole, itraconazole, voriconazole, clarithromycin, telithromycin or ritonavir as dose of Certican may need to be modified. • Caution with concomitant use with midazolam, St John’s Wort, macrolide antibiotics (e.g. erythromycin), fluconazole, anticonvulsants (e.g. phenytoin, carbamazepine, phenobarbitone), calcium channel blockers, protease inhibitors and anti-HIV drugs. • Grapefruit and grapefruit juice should be avoided. • Avoid use of live vaccines. Side effects: • Very common - Infections (viral, bacterial, fungal), upper respiratory tract infection, leucopenia, hyperlipidaemia (cholesterol and triglycerides), new onset diabetes mellitus, hypertension, abdominal pain, pericardial and pleural effusion, peripheral oedema and incisional hernia. • Common - urinary tract infections, lower respiratory tract infection, wound infection, sepsis, thrombocytopenia, pancytopenia, anaemia, coagulopathy, thrombotic thrombocytopenic purpura/haemolytic uraemic syndrome, lymphocele, venous thromboembolism, graft thrombosis, diarrhoea, nausea, vomiting, stomatitis/mouth ulceration, oropharyngeal pain, pain, impaired healing, angioneurotic oedema, acne surgical wound complication, pancreatitis, proteinuria, erectile dysfunction, and hepatic enzyme abnormal. • Uncommon - haemolysis, male hypogonadism, interstitial lung disease, hepatitis, hepatic disorders, jaundice, rash, myalgia, renal tubular necrosis, and pyelonephritis. • Rare - pulmonary alveolar proteinosis and leukocytoclastic vasculitis. (cer230113).

PBS Information: Section 100 Public Hospital Authority Required (STREAMLINED) and Private Hospital Authority Required: initiation, stabilisation and review of therapy. Section 85 Authority Required: maintenance therapy. Refer to PBS Schedule for full authority information.

See approved Product Information before prescribing. Approved Product Information available on request or via www.novartis.com.au/products_healthcare.html. Please note change(s) in Product Information in italics. myfortic® (mycophenolic acid as sodium salt): Indication: Prophylaxis of acute transplant rejection in adult patients receiving allogeneic renal transplants; For induction and maintenance treatment of adult patients with WHO Class III, IV or V lupus nephritis. Dosage and administration: Myfortic should be initiated and maintained by appropriately qualified specialists who are expert in managing the safety risks associated with the contraindication for use in pregnancy. Recommended dose is 720 mg administered twice daily. Patients with severe chronic renal impairment (GFR < 25 mL.min-1.1.73M-2) should be carefully monitored. In some studies, a daily dose greater than 1440 mg/day has been used for induction therapy in patients with lupus nephritis. See full PI before prescribing. Contraindications: Pregnancy since it is associated with increased risks of first trimester pregnancy loss and congenital malformations. Females of reproductive potential must be counselled regarding pregnancy prevention and planning. Patients with a hypersensitivity to mycophenolate sodium, mycophenolic acid or mycophenolate mofetil or to any of excipients of formulation. Precautions: Increased risk of first trimester pregnancy loss and an increased risk of congenital malformations, especially external ear and other facial abnormalities including cleft lip and palate, and anomalies of the distal limbs, heart, esophagus, and kidney. Myfortic should not be started in women of child bearing age until a negative pregnancy test has been obtained. Two types of reliable contraception must be used in these women before beginning Myfortic, during therapy and for 6 weeks after their last dose. Myfortic could reduce the efficacy of oral contraceptives. Increased risk of developing lymphomas and other malignancies, particularly of the skin. Oversuppression of immune system with increased susceptibility to infection. Cases of progressive multifocal leukoencephalopathy (PML) and pure red cell aplasia have been reported in patients treated with mycophenolate mofetil. Patients should be instructed to report any signs of bone marrow depression. Full blood counts should be performed on a regular basis to monitor for neutropenia and anaemia. Pure red cell aplasia (PRCA) has been reported in patients treated with MPA derivatives and immunosuppressants. Vaccines may be less effective and use of live attenuated vaccines should be avoided. Administer with caution in patients with active serious digestive system disease. Avoid in patients with rare hereditary deficiency of hypoxanthine-guanine phosphoribosyl-transferase (HGPRT). Sexually active men are recommended to use condoms during treatment and for a total of 13 weeks after their last dose of Myfortic. Female partners of male patients are recommended to use highly effective contraception during treatment and for a total of 13 weeks after the last dose. Not recommended for use in pregnancy. Not to be used during lactation. Interactions: Oral contraceptives, live vaccines, tacrolimus, cholestyramine and drugs that interfere with enterohepatic circulation; aciclovir, ganciclovir; antacids containing magnesium and aluminium hydroxide. In a PK study no interaction was demonstrated with pantoprazole; concomitant administration with azathioprine has not been studied. Adverse effects: Increased risk of developing lymphomas and other malignancies, particularly of the skin; increased risk of opportunistic infections such as CMV, candidiasis, herpes simplex. Adverse effects associated with the administration of Myfortic in combination with cyclosporin microemulsion and corticosteroids include: Very common: viral, bacterial and fungal infections, leukopenia, diarrhoea. Common: Upper respiratory tract infections, pneumonia, anaemia, thrombocytopenia, pyrexia, fatigue, nausea, dyspepsia, vomiting, constipation, abdominal pain, abdominal distension, flatulence, loose stools, abdominal distension, gastritis, abnormal liver function tests, increased blood creatinine, headache, cough. The following adverse reactions to are attributed to mycophenolic acid derivatives as a class effect: colitis, oesophagitis, CMV gastritis, pancreatitis, intestinal perforation, gastrointestinal haemorrhage, gastric ulcers, duodenal ulcers, ileus, serious infections including meningitis, infectious endocarditis, tuberculosis, atypical mycobacterial infection, neutropenia, pancytopenia, Polyomavirus associated nephropathy (PVAN) especially due to BK virus infection. Cases of progressive multifocal leukoencephalopathy (PML) and pure red cell aplasia (PRCA) have been reported. Other adverse effects – see full Product Information. (myf030912m). Designed by .com.au 1318/0812 Novartis Pharmaceuticals Australia Pty Ltd ABN 18 004 244 160 54 Waterloo Road North Ryde NSW 2113 ® Registered trademark of Novartis Pharmaceuticals. TRA0053, First issued July 2013.

Novartis is very proud to support the Transplant Nurses Association

TRANSPLANT JOURNAL OF AUSTRALASIA

GUEST EDITORIAL

Then and now: 24 years in transplant coordination Anne Griffiths • Heart/Lung Transplant Coordinator,The Alfred Hospital, Melbourne, VIC 19/12/1988 – 30/08/2013

In 1988, the Commonwealth Government made the decision to set up a second adult heart/lung transplant unit and a second liver transplant unit in Australia. Both The Alfred Hospital and the Austin Hospital applied for these specialties. The Austin gained the liver transplant unit and The Alfred was given the responsibility of establishing the heart/lung transplant unit. Apparently, this decision was influenced by The Alfred having the Baker Institute on site. Since the early 1960s, the Baker Institute has been conducting research into cardiac disease and function. I actually used to visit the laboratory animals after their transplants in the late sixties. My first experience of transplant medicine was in the late 1960s. I was responsible for preparing the intensive care unit (ICU) to care for the patient receiving the second heart transplant performed in Australia in 1968. My responsibilities included washing the walls from floor to ceiling, balanced on a patient locker. The locker was on wheels, so it made the job easier to move around the room (occupational health and safety was not around then). I also had to set up the patient’s bed with the simple but effective portable arterial monitoring system, which had been designed by one of the registrars and made in The Alfred’s workshop. Later, I was in charge of a mixed medical/surgical ward that was responsible for the care of renal transplant patients (for about a year), prior to the development of a specific renal transplant ward. I remember expressing an interest in transplant coordination to my colleagues during a morning tea break. The idea of a dedicated nurse to oversee the patient’s progression through their transplant journey was foreign to all of us. An opportunity arose, while I was on long service leave, to visit Papworth Hospital in Cambridge, the United Kingdom. (One of my medical colleagues was spending his sabbatical

at Papworth.) While visiting, I was able to spend time with one of the transplant coordinators. At this time I did not know if I would return to The Alfred, but as the decision regarding the new Victorian transplant units was expected soon, I felt I should find out what the transplant coordinator role entailed. My visit with the UK transplant coordinators involved visiting the transplant ward and learning how they ran their outpatient transplant clinics. On my return to Australia I was asked to apply for the position of heart/lung transplant coordinator at The Alfred Hospital. I was able to report to The Alfred Hospital executive on the impact that a heart/lung transplant unit would have on the hospital activity, namely the impact on bed state which certainly proved correct. Several months later, I commenced the heart/lung transplant coordinator role on 19 December 1988. At that time, there was no specific funding allocated to the service, so my training consisted of the one day that I spent visiting Papworth Hospital, and one and a half hours with the then Victorian donor coordinator, Geoff Scully. When Mr Don Esmore was appointed as The Alfred’s heart/lung transplant surgeon, I went to Sydney to meet him. During this 24-hour visit, we also spent some time with Mrs Michael McBride, who was the St Vincent’s heart/lung transplant coordinator — the only other one in Australia. After this brief introduction to transplant coordination, I was essentially left to get on with the job! Between the time of Mr Esmore’s appointment and the time in which he commenced his duties, I wrote the unit’s

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first transplant patient manual, using resources from both Michael McBride at St Vincent’s, and several overseas transplant units. I adapted and developed these resources into a manual that I hoped would meet the needs of the patients undergoing heart/lung transplant at The Alfred. As you can appreciate, the donor and recipient coordinator group in Australia at that time was quite small, and as a result the on-call was relentless. I remember the time when an interstate donor coordinator was required to coordinate a procurement from her bed space whilst an inpatient recovering from an appendicectomy! I was on-call seven days a week, 24 hours a day for six months (getting only two weekends off) which was exhausting. I had to demand (somewhat loudly in my boss’s office), a break. Initially, I was granted two weeks’ leave, but six days into this leave, I received the sad news that our transplant procurement team had been involved in a car accident whilst returning to The Alfred. Sadly, Constable Trevor Givern, from Victorian Police transport branch was killed. The rest of the team sustained injuries requiring hospital admission. The Victorian Police kindly took the donor heart to The Alfred where it was successfully transplanted. As a result of this tragic situation, I went back on call that night. Finally, in September 1989 Louise Macfarlane was appointed as a part-time heart/lung transplant coordinator. In The Alfred unit’s first year, Victoria and Tasmania had a total of 63 donors. I believe this was due to the incredible positive publicity that transplantation had recently received. Unfortunately, this was reversed a year or so later, when as a result of an unhappy donor family, transplantation received adverse publicity and the donation rate dropped significantly.

Referrals in the early days were very brief — usually a one-page summary, consisting of certification of death, vital statistics, one set of observations and one arterial blood gas (ABG). There were usually only two or three lines outlining what had happened to the donor. I would get x-ray reports and occasionally an echocardiogram. With limited donor information, sometimes we had to take a leap of faith, hoping that the donor heart would function once implanted in the recipient. Currently, it can take up to 45 minutes to receive all the information regarding the donor x-rays and echocardiograms can be emailed and, sometimes, we are able to arrange angiograms to be performed at donor hospitals. Despite the sector’s best efforts, over the last three years, we are still waiting for the electronic donor referral (EDR) to come into practice next year. Cross-match and blood group results were always conveyed orally to me, before I discussed the donor/recipient case with the surgeon. Hard copy of the blood group was only received when the donor organ arrived. This procedure has changed over the years, and now, as a safety precaution, the blood group and cross-match results are shown to the surgeon before recipient surgery. Once the public were aware that there was an adult heart lung transplant unit established in Victoria, we started receiving referrals regarding potential recipients. This required medical staff to safely transfer them to our hospital, which necessitated the coordinator to gain a new set of skills, navigating the logistics of this transfer process as well as dealing with the media. The first transcontinental procurement was in the last quarter of 1990 when Western Australia (WA) did not have any donor coordinators. I received a personal call from one of our past surgical registrars and he informed me that he believed he had a suitable young person for heart and lung donation. After consulting with Mr Esmore and the Victorian donor coordinators, the team set off in a Lear 125 jet which had to refuel in the middle of the Nullabor plain. Fortunately the trade wind is from west to east so they could make it back without refuelling. Geoff Scully flew over with them to attend to the donor family and the legal matters associated with organ donation. The organ retrieval surgery and transplant operation went well, and the young recipient went back to studying for her exams whilst recovering in hospital. Another first for Australia occurred in late 1991 when we transported by air a patient from WA to Victoria on an intraaortic balloon pump. This was a logistical challenge that took four days to organise. The medical retrieval team consisted of an ICU consultant, a perfusionist, an ICU nurse and myself. It involved the cooperation of the Royal Australian Air Force

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(RAAF), and police and ambulance services in Victoria and WA. We had to find out at what height a balloon pump would work safely because of the helium. The plane was pressurised to sea level and we had to determine how much the equipment weighed and we were required to wear pants and lace-up shoes. We also had to organise special insurance for the team and the equipment, and we were also required to gain permission to load equipment near the Duke of Edinburgh’s plane that was parked at Tullamarine Airport at the time! As the sun was rising around 5.30 am, the Hercules landed in Victoria from Amberley, Queensland, and we loaded the equipment. As our team was not registered in WA we joined the team of seven Air Force medical and nursing staff, as well as two flight crews. An RAAF photographer was also on board and whilst taking his photos he gave me a number of valuable lessons in the art. Fourteen hours after leaving The Alfred, we arrived back in our ICU with our first WA heart transplant waiting list patient on an intra-aortic balloon pump. The first extracorporeal membrane oxygenator (ECMO) retrieval followed. The team, consisting of two surgeons and an anaesthetist, drove to Ballarat and inserted a venoarterial extracorporeal membrane oxygenation (VA ECMO) circuit in the patient. On the return journey the perfusionist realised the battery was running low on the ECMO. I was travelling in front of the ambulance with the police. The police raced forward to every intersection and stopped the traffic, allowing the ambulance to pass without restriction — it was a terrifying experience! Eventually, we had to stop in the outer suburbs of Melbourne, at a local ambulance station to recharge the battery. When I began as a coordinator, there were no donation agencies as we now know them in Victoria, Queensland or South Australia. Donor coordinators were employed by hospital renal units — which was viewed even then, as being inappropriate. Only the New South Wales donor coordinators were affiliated with a non-hospital organisation — The Red Cross. Now, of course, all state donation agencies are combined under a national framework (DonateLife) organised and directed by the Organ and Tissue Authority (OTA). Over the years, the role of the donor coordinator has not essentially changed around the country, whereas each recipient unit’s coordinator role varies to different degrees and the titles have changed. For a number of years, hospitals did not receive any compensation for the care of a potential donor. Supporting a patient to donation does increase the cost of their care, and the financial burden of this sits with the donor hospital. In the late 1990s to early 2000s the Department of Health in Victoria instituted a payment of $2,000 for a procurement of multiple organs and $500 for kidneys alone. I was somewhat concerned when I received a call from an individual in the Commonwealth Government, who asked if it was true that I was paying for organs! Now, through the OTA the donor hospitals are financially compensated. 8

Previously, promotion of organ and tissue donation was shared by both the donor and recipient coordinators, a part of the role I personally enjoyed. This involved activities such as going with a donor coordinator and recipient to different schools throughout the state of Victoria. We also presented to professional or charitable groups, for example, Rotary, staffed a booth at the Royal Victorian Show in the Government Pavilion and, of course, during what was originally known as “Kidney Week” and later on “Organ and Tissue Donation Day”, we would put together an organ and tissue donation promotional display in all of our transplant hospitals. I enjoyed this part of the role and found it gratifying to speak with a number of people, some of who were still struggling with the decision they made to donate a loved one’s organs. We were able to help them by speaking about the experience that they had been through, showing them pictures of healthy recipients and having (appropriately chosen) recipients on hand for them to speak with. Now, DonateLife has ownership of this promotional role. They have publicity officers to organise and direct activities, and unfortunately all that is required of the recipient coordinator is to ask appropriate recipients to assist in promotion by interviews for radio, television and newspapers. When looking back. I was fortunate to have been in the position of heart/lung transplant coordinator at The Alfred since the beginning of the unit. I believe my previous experience as a charge nurse with an ICU certificate was very helpful. Another helpful trait was that whatever circumstance I was faced with I considered a challenge, not a problem. My goal was to bring the team and their precious cargo home safely. In the course of my work I have encountered situations such as a volcano erupting, drug raids, a thief in the process of stealing a car and gun shots being fired at suspects running down the other side of the road when coming into the hospital one evening. The on-call element at times was exhausting, but being a part of a good team and seeing how recipients and their family’s lives can be changed for the good made it all worth while. I have been so amazed how donor families can think of others at such a difficult time, and many of their stories I will never forget. It has also been great to meet so many people from within the health system from all walks of life and also from all over Australia and New Zealand. So many people were happy to go out of their way to help when asked. The coordinators around the country have been an excellent group to work with over the years. As for my future, I have promised myself after having my life controlled by a roster for 50-odd years I am not going to make any commitments till next year. In the meantime, I will enjoy the races, cricket, tennis, summer and catching up with friends and family. Volume 22 Number 3 – December 2013

✓

Ensu re yo ur g tacr ets the custom olim us focorrect er rmu latio n

✓ Check their tacrolimus medicine pack to ensure the appropriate ✓

medicine (by tradename) and dose has been dispensed Check with their transplant healthcare professional if they receive an unfamiliar medicine or if they have questions about their tacrolimus dose or dose frequency

Patients must only be switched between tacrolimus formulations under the close supervision of a transplant specialist1

(tacrolimus)

PBS Information: Authority Required. Refer to the PBS Schedule for full details.

PLEASE REVIEW PRODUCT INFORMATION BEFORE PRESCRIBING (AVAILABLE FROM JANSSEN.COM.AU)

PROGRAF® tacrolimus capsules & PROGRAF® XL tacrolimus Prolonged-release Capsules MINIMUM PRODUCT INFORMATION INDICATIONS: Liver, kidney, lung or heart allograft transplantation in adults and children. DOSAGE AND ADMINISTRATION: PROGRAF® Capsules: Administer TWICE DAILY as two divided doses, in the morning and evening. PROGRAF® XL Prolonged-release Capsules: Administer ONCE DAILY in the morning. For both presentations, individualise dosage and monitor tacrolimus whole blood concentrations. Oral: 0.10−0.20 mg/kg/day for liver transplantation, 0.15−0.30 mg/kg/day for kidney transplantation 0.10–0.30 mg/kg/day for lung transplantation and 0.075 mg/kg/day for heart transplantation. Children: Refer to full PI. Convert from PROGRAF to PROGRAF XL on 1:1 mg:mg basis and monitor tacrolimus whole blood concentrations. CONTRAINDICATIONS: Hypersensitivity to tacrolimus or other macrolides, or to other ingredients of the capsules. PRECAUTIONS: Careful ongoing monitoring; post-transplant diabetes mellitus; neurotoxicity; posterior reversible encephalopathy syndrome; pure red cell aplasia; nephrotoxicity; hyperkalaemia; malignancies; infections; hypertension; myocardial hypertrophy; conversion between tacrolimus formulations; driving/operating machinery; pregnancy; lactation; interaction with other medicines metabolised by CYP3A4 − refer to full PI. ADVERSE EFFECTS: Common: tremor, renal impairment, hyperglycaemic conditions, diabetes mellitus, hyperkalaemia, infections, hypertension and insomnia. Serious – infections and infestations, malignancies, haematological disturbances, anaphylaxis and serious allergic reactions, diabetes mellitus, visual and nervous disorders − refer to full PI. PRESENTATION: PROGRAF 0.5mg capsules (pack of 100), Store below 25°C. PROGRAF 1mg capsules (pack of 100), PROGRAF 5mg capsules (pack of 50), Store below 30°C. Store in original blister and aluminium wrapper. PROGRAF XL 0.5 mg prolonged-release capsules (pack of 30), PROGRAF XL 1 mg prolonged-release capsules (pack of 60), PROGRAF XL 5 mg prolonged-release capsules (pack of 30). Store below 25°C. Store in original blister and aluminium wrapper. Date of preparation: January 2011. REFERENCE: 1. PROGRAF XL Approved Product Information January 2011. Janssen-Cilag Pty Limited. ABN 47 000 129 975. 1−5 Khartoum Road, Macquarie Park NSW 2113. Ph: (02) 9815 3333, Fax: (02) 9815 3300. PROGRAF® is a registered trademark of Astellas Pharma, Inc for tacrolimus preparations. Date of revision: April 2013. JANS0620/EMBC 04/13

TRANSPLANT JOURNAL OF AUSTRALASIA

ARTICLE

The Australian paired Kidney eXchange (AKX) program — the first three years Claudia Woodroffe1 and Paolo Ferrari 1,2 • 1 Department of Nephrology, Fremantle Hospital, WA 2 School of Medicine and Pharmacology, University of Western Australia, WA Address for correspondence: Claudia Woodroffe, CNC, AKX Program Coordinator Department of Nephrology, Fremantle Hospital, Alma Street, Perth, WA 6160 Tel +61 8 9431 3690 Fax +61 8 9431 3692 Email Claudia.Woodroffe@health.wa.gov.au

Abstract Kidney paired donation (KPD) is a strategy to facilitate live kidney donor transplantation between incompatible donor–recipient (D/R) pairs. In the simplest form of KPD, two living-kidney D/R pairs, both of whom cannot undergo transplantation because of blood group (ABO) or cross-match incompatibility, are paired so that the donated kidneys are transplanted into the matched recipients. This helps to completely avoid immunologic barriers, thereby allowing both recipients to receive a living-donor kidney transplant. KPD was first introduced in Western Australia in October 2007, and the success of this local initiative subsequently led to the national expansion of the program. The Australian paired Kidney eXchange (AKX) program was established in 2009, under the auspices of the Organ and Tissue Authority (OTA), and with the collective enthusiasm of participating, referring and transplant centres across the country. AKX began facilitating kidney transplants in October 2010, and this new strategy to expand the living donor pool has proven remarkably effective, with KPD, to date, responsible for 10% of all live donor kidney transplants occurring in Australia. This compares very favourably with existing KPD programs throughout the world, although criteria for these programs vary considerably. Using incompatible donor–recipient pairs and altruistic donors, the AKX has successfully matched and transplanted 55 patients arising from nine match runs between October 2010 and October 2012. At the time of writing (June 2013), a further 10 pairs are scheduled for surgery. This article aims to give an overview on the progress of the AKX program from implementation in 2009 to the present.

Introduction

has succeeded as the transplant numbers show11,12. However,

The concept of kidney paired donation (KPD) first came

without a concomitant strategy to increase live donation

to light in 1986, but it is only in the past decade that such a program has begun to show the increased and varied possibilities of transplantation for those recipients frustrated by the knowledge they have a perfectly healthy and willing, but incompatible donor1-5.

rates, the unforeseen flip side to this effort has been the rather sharp decline in living donors, as noted above. Continued expansion of the Australian paired Kidney eXchange (AKX) program nationally and internationally may help to abrogate this issue in the future. Our experience to date, indicates that KPD is an extremely effective tool to increase the rate

The benefits of living kidney donation have long been known

of living donor transplantation13,14. National implementation

and efficiently documented

. However, for reasons that

of the program identified many obstacles, clinically and

remain unclear, in recent times in Australia the living donor

logistically, that may have given us pause for thought along

rate has fallen from 44% to 35%11. This has been offset

the way. However, we have no doubt that lessons learnt over

to some degree by the increased rate of deceased donor

these past three years will ensure continued effectiveness

transplantation, but this is a trend that may be difficult to

into the future, and subsequent longevity of the program.

6-10

maintain on a long-term basis. It is becoming more apparent that strategies to increase the

The AKX program: August 2010 – April 2013

living kidney donor pool must be tackled in concert with those

AKX stock and flow

used for encouraging deceased organ donation. A significant

Donor and recipient enrolments in the AKX registry began

effort has been made in the last three years to address the

in August 2010, after a year-long implementation process.

deficiency in deceased donor organs, and to some extent this

By the time of the first match run in October 2010, there

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

were 22 donor–recipient pairs registered and active for the

April 2013 run, with a total of 44 recipients active for the run.

run. The program has continued to grow and there has been

This is the highest number of match run participants to date.

a steady number of new pairs being added each quarter to

The total number of matched pairs in match runs 1–11 was

the registry. As of 30 April 2013, a cumulative number of 152

92 out of the 152 registered — a match rate of 61%. All match

pairs had been registered. Figure 1 provides an overview of

runs (with the exception of match run 2) were performed

the number of enrolled pairs, existing and new, at the time

using the 2000 mean fluorescence intensity (MFI) cut-off for

of each quarterly match run. Some pairs left the program

donor-specific antibodies (DSA) and acceptable mismatch

without being included in any match run. The main reasons

criteria (mismatched HLA at the broad antigen level between

for leaving the program were a) the donor (n=17) or recipient

the donor and transplant candidates that are compatible at

(n=6) were found to be unsuitable for transplantation, b)

the structural level) DSA with MFI of <2000 are unlikely

the recipient received a kidney transplant by other means,

to lead to a positive complement-dependent cytotoxicity

either from a deceased donor (n=17), from a directed ABO-

(CDC) and flow cytometric cross-matches (FCXM); therefore

or HLA-incompatible donor (n=14) following desensitisation,

can accurately determine transplant suitability without the

or found an alternative compatible live donor transplant

need for blood sampling, that is, a virtual cross-match. This

(n=3). There were also three deaths among AKX registered

virtual cross-match approach excludes potentially matching

pairs (two recipients and one donor). The fact that, to

transplant candidates to immunologically unsuitable donors

date, no pair has chosen to voluntarily leave the program

and has been established as a valid and effective solution

because they have felt the chances of finding a match were

for identifying appropriate matches, particularly for highly

insurmountable, has been of particular encouragement to

sensitised recipients15. CDC and on occasion FCXM are still

us. Some pairs have been registered since inception of the

performed; the latter may help to determine the suitability of

program, and, although no doubt extremely disappointed

transplant candidates for transplantation.

and increasingly downhearted as each match run passes without a potential match being found, they have chosen to

Number of proposed and declined matches

remain in AKX. We think this is in part due to the high rate of

Of the 92 matched pairs that were CDC-tested, only two

transplantation achieved, even for the highly sensitised and

donor–recipient pairs had a positive cross-match that

blood group O recipients, and also because the AKX gives

prevented progression to transplantation. This is a negative

these recipients an additional option to perhaps eventually

cross-match rate of 98.5%, which successfully demonstrates

find a suitable kidney, as enrolments continue to progress,

the validity of our matching criteria.

and the donor pool expands. Despite

only

two

positive

CDC

results

precluding

Number of matched pairs identified in match runs

transplantation, there were other acceptable pairings that

There have been 11 match runs since implementation of

straightforward immunological compatibility. Of the non-

the program, with the number of new pairs per match run

proceeding transplants, one 6-way altruistic donor (AD)

Figure 1. P Ferrari fluctuating between 9 and 17. The latter was achieved for the

chain prematurely broke down into a 4-way AD chain due

did not proceed to transplantation for reasons other than

to a high repeat anti-blood group titre for one recipient Number of patients in quarterly matching runs Australia, cumulative number of individual candidates = 152

authorised for ABO-incompatible (ABOi) transplant, one 2-way and two 3-way chains were cancelled within three days from scheduled surgery due to recipient issues, one 3-way chain was not progressed because of strong peak DSA, three 3-way chains did not progress because of donor issues, one 3-way chain was not progressed because of positive FCXM, and four 2-way chains were not progressed as eventually declined by transplant centres. Fortunately, eight of the recipients in non-progressing chains were able to be rematched in subsequent match-runs and finally received

Month

Figure 1: Quarterly AKX enrolments, new and existing pairs. This is an overview of the number of enrolled pairs at the end of each quarterly match run. The figure shows the number of pairs that were already in previous runs (existing), and those just activated for the run (new).

Volume 23 Number 3 – December 2013

a KPD-facilitated kidney transplantation.

Number of people who underwent KPDs Figure 2 shows KPD match and transplant rates of all the patients from match runs 1–9 who actually received a kidney 11

TRANSPLANT JOURNAL OF AUSTRALASIA

Figure 2

P Ferrari

number of non-sensitised ABOi pairs and a high proportion

KPD match and transplant rates

Cumulative data on 115 pairs in 9 match runs, Australia 2010-‐2012

of O recipients compared to O donors. Approximately 60% of recipients have a calculated panel reactive antibodies (cPRA)

neg. CDC-‐XM 98.5%

Not transplanted Transplant after re-‐match Transplant after 1st match

level of >75% and nearly half (43%) of the recipients have a cPRA>90%, indicating that these recipients have a very small probability to find a match. The rate of unsensitised recipients included because of insurmountable ABO incompatibility with their donor remains steady at around 15%. In view of the high level of sensitisation of enrolled recipients,

63%

58%

48%

it is encouraging that over 40% of enrolled recipients found a match and received a kidney transplant through the AKX

Figure 2: AKX cumulative match and transplant rates — this summarises the match and transplantation rates achieved in the first 9 match runs from August 2010 to October 2012.

program. More remarkably, and a key measure of paired

transplant. Fifty-five patients received a kidney through

the introduction of acceptance of ABOi transplantation

paired kidney exchanges. This results in a transplant rate

for recipients with low-titre anti-A and anti-B blood group

of 48% of the cumulative number of 115 registered pairs

specific titres, which has provided a significant contribution

included in these match runs. Following the January and

to the transplant rate, as Figure 4 demonstrates. Of the

April 2013 match runs, a further 10 pairs were identified. At the time of writing, all 10 pairs have been authorised for transplantation and surgery dates have been booked. Based on this most current data, and should all these transplants

exchange performance, 42% of these transplanted patients had a cPRA >75%. A contributor to this success has been

transplants achieved, 56% of recipients were blood group O, with 18% of these being a direct result of blood group incompatible transplantation.

occur, the transplant rate for the cumulative number of 152

Currently, each participating centre may register recipients

registered pairs is 44%. At this point in time, we are able to

for ABOi matching based on the centre’s expertise with ABOi

report early outcomes for the first 20 recipients in the AKX

transplantation and the recipient’s baseline anti-blood group

program. After one year, 95% of patients remained rejectionfree throughout this period. Fourteen patients underwent a total of 18 kidney biopsies (three per cause, 15 protocols). Records on renal allograft function available to date revealed that serum creatinine was 108±27μmol/l at discharge and 88±11μmol/l at one year. Overall these results are excellent.

antibody (ABGAb) titre. To date, there is no agreed, strict national standard for ABGAb, which raises the spectre of an inconsistent approach to acceptance of ABOi matching. Figure 4 P Ferrari

Discussions with the transplant community are ongoing regarding a resolution to this issue. ABO-‐incompatible matching and transplant rates

Difficulties and hurdles encountered

Cumulative data on 115 pairs in 9 match runs, Australia 2010-‐2012

As shown in Figure 3, the AKX program has included a high proportion of recipients with a high level of sensitisation, a low Figure 3 P Ferrari

ABOc

D à R Blood group

ABOi

ABOc

60 50

Cumulative data on 115 pairs in 9 match runs, Australia 2010-‐2012

Ratio O recipients : O donors = 2 : 1

43% recipients with cPRA 90-‐100% cPRA 67±36% (median 83%)

Number

Type of immunological incompatibility in registered pairs

40 30 20

Recipients

B AB

0 O

Loops

O à A

O à O

A à A

A à AB

B à B

AB à AB

ABOi

Transplants facilitated

A à B

B à A

A à O

B à O

% cPRA (A, B, DR, DQ)

Figure 3: Blood group distribution in donors and recipients and level of sensitisation of recipients included in the match runs 1–9. cPRA — calculated panel reactive antibodies.

Figure 4: Contribution of ABOi matching to transplant rates. Of the 55 transplants arising from 9 match runs, 56% of recipients were blood group O. 18 % of these blood group O recipients received a transplant through blood group incompatible donors. This is a significant improvement on the achievable rates prior to the introduction of ABOi exchanges. ABOi — ABO incompatible; ABOc — ABO compatible.

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Non-directed or altruistic donors and KPD

unforeseen, others potentially preventable, which have

Non-directed donors (NDDs), also known as altruistic or

hindered progression of transplant surgeries in a timely

Good Samaritan donors are becoming increasingly available,

manner.

although there remains a degree of uncertainty in some jurisdictions regarding appropriate policy guidelines for the use of ADs in transplant programs. NDDs enable, at a minimum, 3-way exchanges rather than a standard 2-way, and the chain could likely continue beyond this, the only potential brake being the logistical impediments of facilitating greater than 3-way chains, even if simultaneity of transplants

The time from finding a match to undergoing surgery is a variable that is not controlled by the AKX program, and for this reason, a more useful marker of wait time performance is the wait time from registration to matching. As of 30 June 2013, the average wait time to match is 142 days. Blood group O and highly sensitised recipients wait the longest.

was not observed. As Wallis et al.2 so aptly describe,

As transplant surgeries are performed on the same day, the

“incorporating altruistic donors allow KPD to multiply the

primary issue that is troublesome to many centres is finding

good that results from the donor’s gift”. NDD in match runs

a day for surgery, particularly if the day is not the scheduled

2 and 3 were responsible for one 4-way and one 3-way chain (seven transplants), which included two wait list recipients as beneficiaries of a live donor kidney. Unfortunately, no NDD has been included since the fifth match run, which has been disappointing given the optimising effect on transplant rates that an NDD would enable. Such donors, if allocated into the program, can result in a domino effect and facilitate a number of transplants, with more than 1 recipient becoming a beneficiary of the NDD16-18.

renal surgical day for that centre. Essentially, a day of surgery that is mutually acceptable to all centres may take many weeks to confirm, and this has certainly been the case as the program grows and transplant numbers rise. Some centres are often involved with more than one chain, adding an extra layer of difficulty to the problem. One possible solution proposed was that each centre could set aside a specific, commonly agreed day per interval, and if no transplants were identified in the match run, this day could then be utilised for

However, in the jurisdictions where NDD policies are in

normal surgeries as at least six weeks’ notice would be given.

place, there still remains some hesitation to incorporate

Nevertheless, this proposal has not yet gained consensus

these donors into the KPD program. One potential reason

amongst the majority of centres.

for this may be the perception that this approach in some way discriminates against highly sensitised patients

Organ transport

on the deceased donor wait list, although an alternative

The shipping of living donor kidneys was always going to

compromise was agreed upon whereby an NDD is first

be somewhat of an unsettling prospect, both in terms of the

matched against the highly sensitised recipients in the

potential for prolonged ischaemic times, and the inherent

deceased donor list, and if no match is found, this donor

perception of poorer graft function. Logistical difficulties

may then be allocated into KPD. NDD chains, also called “domino paired donations”, are initiated by NDD, and terminated by having the last paired donor (orphan donor kidney) in the chain give a kidney to an unpaired recipient on the deceased-donor waiting list. In AKX, the beneficiary

associated with geographical distances, three time zones, disparate daylight saving practices, and the paucity of national carriers experienced with live organ transport have all posed significant issues.

of this orphan donor kidney is always a wait list recipient in

To date, cold ischaemic times (CITs) have largely remained

the state that provided the AD, so there is no disadvantage in

under 12 hours, with only three grafts having CIT between

terms of benefit received for the state where the AD initiated

12 and 14 hours. The goal of AKX has always been to keep

the chain. It may be argued that the centre which assessed

ischaemic times below 12 hours, and adapt schedules to

the donor is not receiving a direct benefit, if the end recipient

facilitate absolute minimum CITs. Donor anaesthetic start

is at another centre, but likewise, singling out specific

times and flight schedules are synchronised to achieve these

centres would ultimately be discriminatory to other wait-list

aims as far as circumstances will allow.

recipients, especially to highly-sensitised, blood group O recipients who are better matched, and have been waiting

However, there have been some factors outside our control,

longer for a kidney.

which have contributed to prolonged CIT in a few instances.

Time from match run and transplant surgery There have been significant difficulties, some quite

Volume 23 Number 3 – December 2013

None of these cases resulted in complications for the recipient; in particular, no delayed-graft function occurred as a consequence of CIT more than 12, but less than 14 hours. 13

TRANSPLANT JOURNAL OF AUSTRALASIA

Figure 5

P Ferrari

Proportion of KPD to total live donor transplants In US, UK and AUS

take root throughout the world, and eventually become a standard addition to the transplant lexicon.

Acknowledgements We would like to sincerely thank all the participating referring and transplant centres, state tissue typing laboratories, and the Organ and Tissue Authority for their continued support of the AKX program.

References Figure 5: A comparison of KPD contribution to live donor transplant rates in the UK, US and Australia 2001–2012.

The future of AKX We envisage that the future of KPD in Australia will be one of sustained and increasingly rapid growth as we continue to fine-tune the processes. We have been enormously encouraged by the willingness of referring and transplanting centres across the country to address any issues willingly, and with great goodwill, notwithstanding the sometimes onerous efforts required. The program has thus far proven to be very successful, with the predicted 10% of live donor transplants being achieved. In comparison with other KPD programs, it also stands up exceedingly well, as indicated by Figure 5. The United Kingdom (UK) introduced a national KPD program in 2007. In comparison, the United States (US) commenced their programs in 2001, albeit on a regional basis only. Despite far greater populations, the US and UK have not been able to achieve outcomes in terms of the proportion of KPD-facilitated transplants to the overall live donor kidney transplantation rates that have been reached in Australia. There are more challenges ahead as we consider future directions, and endeavour to further improve outcomes for live donor transplantation, and for those recipients who are particularly difficult to match. Some of these future strategies that could be considered are a) to include all NDD into AKX, to allow maximisation of transplants, in particular for O recipients, b) to raise the MFI thresholds for unacceptable DSA in combination with desensitisation, if a DSA-positive KPD recipient has a significantly reduced immunological risk with the matched donor compared to the original donor, c) to include compatible donor–recipient pairs to increase the pool size and enhance matching capabilities and d) to expand the program by including New Zealand. In conclusion, KPD has thus far proven to be a valid solution for patients with immunologically incompatible donors, and the expectation is that the modality of KPD will continue to 14

1. Rapaport FT. The case for a living emotionally related international kidney donor exchange registry. Transplantation Proceedings 1986; 18(Suppl 2):5–9. 2. Wallis CB, Samy KP, Roth AE & Rees MA. Kidney Paired Donation. Nephrology, Dialysis, Transplantation 2011; 26:2091–2099. 3. Blumberg JM, Gritsch H & Veale JF. Kidney paired donation: advancements and future directions. Current Opinion in Organ Transplantation 2011; 16:380–384. 4. Bingaman AW, Wright Jr. FH, Kapturczak M et al. SingleCentre Kidney Paired Donation: The Methodist San Antonio Experience. American Journal of Transplantation 2012; 12:2125–2132. 5. Delmonico FL. Exchanging kidneys — advances in livingdonor transplantation. New England Journal of Medicine 2004; 350:1812–1814. 6. Cecka JM. Living Donor Transplants. In: Cecka JM & Terasaki PI, eds. Clinical Transplants, Los Angeles, UCLA Tissue Typing Laboratory, 1995; p. 363. 7. Terasaki PI, Cecka M, Gjertson DW et al. High Survival rates of Kidney Transplants from Spousal and Living Unrelated Donors. New England Journal of Medicine 1995; 333:333–336. 8. Prabhakar KS, Vathsala A & Woo KT. Long-term Outcome of living unrelated donor kidney transplantation. Transplant Proceedings 2000; 7:1807–1808. 9. Gjertson DW & Cecka MJ. Living unrelated donor kidney transplantation. Kidney International 2000; 58:491–499. 10. Mehrabi A, Wiesel M, Zeier M et al. Results of renal transplantation using kidneys harvested from living donors at the University of Heidelberg. Nephrology, Dialysis, Transplantation 2004; 19(Suppl 4):iv48–iv54. 11. Australia and New Zealand Dialysis and Transplant Registry (ANZDATA). 35th Annual Report. http://www.anzdata.org.au/ anzdata/AnzdataReport/35thReport/2012c08_transplants_ v1.5.pdf Published 18 December 2012. Accessed 4 June 2013. 12. Australian Organ and Tissue Donation and Transplantation Authority. Performance Report 2012, DonateLife. http://www. donatelife.gov.au/media/docs/performance_report_for_2012.pdf Published 22 January 2013. Accessed 4 June 2013. 13. Ferrari P & De Klerk M. Paired kidney donations to expand the living donor pool. Journal of Nephrology 2009; 22:699–707. 14. Woodroffe C & Ferrari P. The Western Australian experience with a kidney paired donation programme. Transplant Nurses Journal 2009; 18:5–8. 15. Ferrari P, Fidler S, Holdsworth R et al. High Transplant Rates of Highly Sensitised recipients with Virtual Crossmatching in Kidney Paired Donation. Transplantation 2012; 94:744–749. 16. Matas AJ, Garvey CA, Jacobs CL et al. Non-directed donation of kidneys from living donors. New England Journal of Medicine 2000; 343:433–436. 17. Montgomery RA, Gentry SE, Marks WH et al. Domino paired kidney donation: a strategy to make best use of live nondirected donation. Lancet 2006; 368:419–421. 18. Roth AE, Sonmez T, Unver MU et al. Utilizing list exchange and non-directed donation through ‘chain’ paired kidney donations. American Journal of Transplantation 2006; 6:2694–2705.

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ARTICLE

“You can’t stay here!” Transition from paediatric to adult health care management for liver transplant recipients Vicki Jermyn • CNC Liver Transplantation Children’s Hospital Westmead, NSW

Abstract Young people who have a liver transplant during their childhood will require medical management for the rest of their life, but this cannot occur in the paediatric health care setting. In Australia, once a young person reaches 18 years of age and/or finishes their secondary schooling, they will need to transfer from a paediatric to adult health care provider. This process is called transition and it is an essential part of the transplant journey. This paper highlights the transition process using a compiled case study to illustrate the various stages of the process and highlight the current transition program at one of Australia’s premium paediatric liver transplant centres. A planned, wellexecuted transition process will allow young transplant recipients to maintain their health and wellbeing as they move into and through their adult life. Regular evaluations of the transition program by staff, former patients and families, and review of other programs are important to improve and update the transition process, which is vital to the long-term care and survival of our patients. One of the main themes at the 6th Congress of the International Pediatric Transplant Association (IPTA) in Montreal, Canada, was the transition of paediatric transplant recipients to adult services. This can be a challenging time, for the young person, their family and the staff who care for them. Whilst attending the IPTA Congress, I also had an opportunity to visit the Hospital for Sick Children in Toronto1 and to look at the Good2Go Transition Program, which is a shared management model between the paediatric and adult transplant centres. This prompted me to look closely at our own transition program and how it could be improved. Adolescence is a time of significant change for young people as they move toward independence. It is especially challenging if the young person has a chronic illness. Young people who have had a liver transplant during their childhood will require ongoing medical management for the rest of their lives, and will need to transfer from a paediatric to adult health care facility once they reach adulthood. This process is called transition, and transplant nurses play an integral role in the coordination of this program. The American Society for Adolescent Medicine2 defines transition as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems”. In Australia, transition usually occurs when a person reaches 18 years of age, regardless of the self-management skills they possess. Many studies have identified the high rate of non-compliance and subsequent graft loss, following transfer of young transplant recipients to an adult centre3-5.

Volume 22 Number 3 – December 2013

Transition is, therefore, a pivotal part of the patient journey and a well-planned process is vital. Most of the patients at the Children’s Hospital Westmead (CHW) have spent a large proportion of their childhood engaging with the paediatric health care system and it may be difficult for the young person and their family to imagine ‘moving on’ to an adult facility. To illustrate our current transition program, I have created a sample case history made up from multiple patient experiences. Bradley was born with liver disease, which developed into end-stage liver disease, requiring liver transplantation as an infant. After a long wait, he was eventually transplanted and had a slow but uneventful recovery. He had no early complications and was on minimal immunosuppression. Bradley attended the clinic every three months. At 18 years of age, he was transferred to the adult health care team. This case history highlights some of the difficulties encountered in the transition process. It is hard for a young person post-liver transplant to become independent and self-sufficient when he has been reliant on his parents and hospital staff all his life. It is confusing for a young adult who has been supervised closely most of his life to move into a role of complete independence with regard to his treatment, medications and liaising with hospital staff. Most adolescents just want to be the same, one of the crowd and accepted. His/her peer relationships are prone to compromises, due to absence from school, or due to frequent and long periods of hospitalisation. Body image issues because of medication and surgery or delayed growth are very common with people who have had a transplant. Even the presence of

TRANSPLANT JOURNAL OF AUSTRALASIA

the characteristic liver transplant scar can immediately identify them as different. They may also have cognitive or physical delays which will further isolate them from their peers. The long relationship that this young person has had with the paediatric medical team will impact on future professional relationships. All of these relationship issues can potentially contribute to a lack of self-management and poor decision-making skills, which the adult medical team expect to see in an ‘adult’ patient. This expectation can lead to misunderstandings and conflict6. One of the key factors in a successful transition is the notion of resilience. Ahern et al.7 describe resilience as “a positive adaptation within the context of significant adversity”. The development of resilience in young people with chronic illness empowers them. Resilient adolescents cope better with transition. The process of building resilience in a young person begins in childhood, with family and community involvement, but in relation to transition, it involves the medical team arming the young person with the skills and knowledge necessary to manage their medical condition in the future. The medical team encourages their independence by giving them knowledge and making them competent in a range of skills that enable them to manage their medical condition. McDonagh and Kelly8 describe transition as ”a dynamic process with a beginning, a middle and an end”. Transition should begin during early adolescence — usually, when the young person starts high school and ending with their actual transfer to the adult health care centre. It should be a gradual process, which is adapted to individual requirements as appropriate.

Transition plan for Bradley Stage 1: 12–14 years of age The transition process for Bradley began when he started high school, aged 13 years. An informal education program is commenced by the liver transplant nurses. Age-appropriate education is given to Bradley, which includes information about his liver disease, liver transplantation, medications, lifestyle issues and the plan for transition. At each clinic visit, he is more involved in the consultation with an opportunity to ask more questions and provide answers, thereby shifting the focus from his mother to him. Early discussion relating to transition helps identify the process as an eventual reality! Many young liver transplant recipients were transplanted as babies or young infants and have no recollection of this time other than their family’s memories or stories, so it is very important that they understand what liver disease and transplantation is. They need to recognise their medications and understand the importance of compliance. They should also start taking responsibility for the administration of their medications, with parental supervision. Preliminary 16

discussions of healthy lifestyle issues such as diet, exercise and sexual education should also be commenced.

Stage 2: 14–16 years of age Bradley still attends the clinic with his mother, but is encouraged to be more involved. He is also given the opportunity to see the doctor on his own for part of the consultation. He is encouraged to be responsible for his medications; for example, dosages and prescription refills. More informal education sessions are used to consolidate previous information such as lifestyle issues (drugs, alcohol and sex education). Opportunities to engage with the adolescent team are also encouraged; for example, the CHIPPS program, which is a peer support group for young people with chronic illness. The team also asks Bradley to do a self-assessment which highlights what he understands about his condition, medications and so on, and what he identifies as his needs for education and support. By using this we can now tailor a more individualised approach to his transition process. The middle stage of the transition process allows the paediatric team to identify deficiencies in the young person’s knowledge about their medical condition and its management and to consolidate and focus education sessions.

Stage 3: 16–18 years of age Bradley will transition to the adult transplant unit after his final year exams, aged 18 years. When he attends clinic, he is encouraged to see the doctor on his own, allowing his mother to join in the final part of the consultation. He is now responsible for booking his appointments, organising prescriptions and contacting the health team as required. As part of our program, Bradley and his mother attend a liver transplant transition day with other patients. This involves a series of formal education sessions looking at liver disease, liver transplantation, medications and lifestyle issues. Bradley then joins the other young people in a session with the adolescent team looking at any problems that they may encounter. The parents also attend a group with members of the psychiatry team to discuss their issues about the relinquishment of their role and ‘letting go’, to allow the young person to take responsibility for his/her own health care. In the final session, Bradley has an opportunity to meet up with previous patients who have already transitioned to the adult medical system to find out how things are different and how these young people have adapted. Staff from the adult hospital also attend to answer any questions. The next part of our program involves an ‘excursion’, where the young people and their parents join the paediatric transplant nurses on a visit to the adult hospital. Here they see the transplant ward, the transplant clinic and the general hospital environment. They also get an opportunity to meet with the adult transplant staff and to make their first appointment. Finally, the Children’s Hospital itself has a formal graduation ceremony which Bradley attends with other young people

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to continue his transplant journey at the adult facility. The transition coordinator at the adult hospital is notified of the transfer and they will contact Bradley and help coordinate and settle him into his new environment. The goal of our transition program is to empower our patients to manage their health care needs so that we optimise their longevity and quality of life9. In the final stages of the transition process, we hope to prepare them and their family for the journey ahead.

Special considerations

from a different angle. Paediatric hospitals tend to be more ‘family’-focused, relying heavily on parental involvement; whilst adult teams work with more self–care focused models. Accusations of “wrapping your patient in cotton wool” have been levelled at the paediatric team whilst adult services are accused of treating “everyone like a number!“ This highlights the importance of good communication and collaboration between the teams at each hospital13. In terms of Bradley’s transfer to the adult hospital, communication between both teams begins. The adult nurses participate in the transition day, giving them an opportunity to meet Bradley and his family and to establish a relationship. During the ‘excursion’ to the adult hospital, Bradley again meets up with the adult nurses who then orientate him to the new environment. A comprehensive summary outlining Bradley’s medical journey including psychosocial issues is sent with a referral to the treating adult physician. This summary will include the latest blood test, ultrasound and biopsy results, and so on. The adult transplant nurses then contact the family and help coordinate the first appointment. The transition coordinator at the adult hospital is also notified and the adolescent team is engaged as appropriate. A follow-up phone call after the first appointment between the teams helps identify any issues or problems encountered. A few months later, Bradley will be surveyed about the process and asked for any ideas to make the experience better for all.

A key issue in the transition process is the role of the parents. Young people with a medical condition often have an intense relationship with their parents. Amaria10 alludes to the difficulties that many parents have during this time, worrying about how their child will cope in the adult world and also how their role will change to a more ‘consultative’ rather than ‘management’ role. Whilst young people worry about transition, many embrace it as part of the milestones that hallmark this exciting time in their lives. Parents, however, can unknowingly set up barriers which can impede the transition process due to their anxiety about what changes will occur11. The strong emotional bond between the parents and the paediatric health care team has often developed over many years and they often worry that the adult health care system will be less nurturing and supportive. Parents can be seen as ‘overprotective’ or even ‘overbearing’ by the adult team, who are unfamiliar with the essential role they have played in their child’s medical management. Therefore, parents need to be engaged in the transition process early and allowed to discuss their concerns and anxieties. The transition process should help reduce the parental role whilst increasing the young person’s independence in managing their own health care. They can then collaboratively work together in the future, just as they will with other issues such as education and work options12.

It all sounds quite easy, but despite all the best intentions, the transition process is far from seamless. Some of the patients who we thought were well prepared for transition “fell apart”, became non-compliant and continued to long for the familiarity of the paediatric health care staff and services and thus found it difficult to establish trusting relationships with their new adult team. So there is still a lot of work to do and we need to continuously evaluate our program, study the literature and investigate other transition programs14 so that we can improve the process.

Bradley’s mother has been his main caregiver all his life. She is a strong advocate for Bradley and has formed close relationships with all members of his paediatric treating team. The whole process of transition has caused her some anxious moments. As Bradley reaches adolescence, she is encouraged to allow him increasing independence in terms of his medical management. She is given opportunities to discuss her role and the impact of the transition process with members of the liver transplant team and is involved in all aspects of the transition planning.

Areas for improvement may include establishing a joint transition clinic attended by both adult and paediatric staff, so that patients, parents and staff develop a rapport and relationships as well as adapting to the different ways in which their health care may be managed14,15. The establishment of a young adult clinic at the adult facility, with adolescent teams, may be helpful. The development of a hand-held, personal medical record is also recommended. Surveying patients and families who have already made the transition is beneficial in identifying areas for improvement.

The other important set of players in the transition process is the staff at both the paediatric and adult transplant units. One of the most important aspects is building and maintaining a collaborative relationship between both teams, so that they understand the other’s perspective. This can sometimes be difficult as each team tends to approach the patient

Transitions in life are always a challenge, but they can also be a positive experience. For young people who have received a liver transplant as a child, medical care is a fact of life, and the transfer or transition from paediatric to adult medical care remains an important part of their transplant journey — one which needs to be well planned and executed.

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My thanks and acknowledgement to the Transplant Nurses’ Association (TNA) for the scholarship to attend the IPTA conference and the support of Dr Michael Stormon to conduct a study tour of Hospital for Sick Children1 in Toronto, Canada.

References 1. The Hospital for Sick Children (SickKids), Toronto. (2011) Good2Go Transition Program. www.sickkids.ca/good2go 2. Blum BW, Garell D, Hodgman CH & Slap GB. Transition from child-centred to adult health-care systems for adolescents with chronic conditions. A position paper of the Society of Adolescent Medicine. Journal of Adolescent Medicine 1993; 14;7:570–576. 3. Annunziato RA, Emre S, Schneider BL, Barton C, Dugan CA, & Shemesh E. Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatric Transplantation 2007; 11:608–614. 4. Lerret S, Menendez J, Weckwert J, Lokar J & Mitchell J. Essential components of transition to adult transplant services: the transplant co-ordinators perspective. Progress In Transplantation 2012; 22:3:252–258. 5. Watson AR. Non compliance and transfer from paediatric to adult transplant unit. Pediatric Nephrology 2000; 14:469–472. 6.

Piering K, Arnon R, Miloh TA, Florman S, Kerkar N & Annuziato RA. Developmental and disease related influences on selfmanagement acquisition among pediatric liver transplant recipients. Pediatric Transplantation 2011; 15:819–826.

7. Ahern NR, Ark P & Byers J. Resilience and coping strategies in adolescents. Paediatric Nursing 2008; 20(10):32–36. 8. McDonagh JE & Kelly D. Adolescence and Transition to Adult Care. Diseases of the Liver and Biliary System in Children, 3rd Edition, 2008, pp. 599–609. 9. Bell LE & Sawyer S. Transition of Care to Adult Services for Pediatric solid Organ Transplant Recipients. Pediatric Clinics of North America 2010; 57:593–610. 10. Amaria K, Stinson J, Cullen-Dean J, Sappleton K & Kaufman M. Tools for Addressing Systems Issues in Transition. Healthcare Quarterly 2011 Oct; 14:special issue. 11. McDonagh JE & Kelly DA. The Challenges and opportunities for transitional care research. Pediatric Transplantation 2010; 14:688–700. 12. Fredericks EM, Dore-Stites D, Lopez MJ et al. Transition of pediatric liver transplant recipients to adult care: Patient and parent perspectives. Pediatric Transplantation 2011; 15:414– 424. 13. Rosen D, Blum R, Britto M, Sawyer S & Seigel D. Transition to adult health care for adolescents and young adults with chronic conditions: Position Paper of the Society for Adolescent Medicine. Journal of Adolescent Health 2003; 33:309–311. 14. Grant C & Pan J. A comparison of five transition programmes for youth with chronic illness in Canada. Child: Care, Health and Development 2011; 37(6):815–820. 15. Harden PN, Walsh G, Bandler N et al. Bridging the gap: An integrated paediatric to adult clinical service for young adults with kidney failure. British Medical Journal 2012; 344:e3718.

TRANSPLANT LIBRARY AVAILABLE ONLINE TO ALL TNA MEMBERS NOW! What is the Transplant Library? The Transplant Library is an online resource providing high quality, evidence-based information on all aspects of solid organ transplantation. The Transplant Library is updated every 2 weeks with new Randomised Controlled Trials, and every 4 weeks with new systematic reviews. Why should I access the Transplant Library? • Includes all Randomised Controlled Trials, including congress abstracts • Provides access to selected, good quality Systematic Reviews • RCTs published from 2004 have been given a methodological quality rating • Selected RCTs have been reviewed by the Centre for Evidence in Transplantation (CET) • Main conclusions written by experts from the CET • Trial registration information • Direct access to free full text articles • All Randomized Controlled Trials (RCTs) in solid organ transplantation • Over 8,000 RCTs from 1970 (earliest record) – present • Including over 4,000 Congress Abstracts • Selected good quality Systematic Reviews & Meta-Analyses from 2008 (over 315) • Includes records that are electronically published ahead of print updates How do I access the Transplant Library? It’s easy! TNA members simply need to go to the TNA website www.tna.asn.au and log on with their email address and password. There is a Transplant Library direct link on the home page, or you can go to the “documents & resource” tab and click on “members links”. This will take you straight into The Transplant Library database…..no need for any further user names or passwords. A Transplant Library search guide is also available on the TNA website “documents and resource” page.

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ARTICLE

Do psychosocial factors influence return to employment following liver transplantation? Bruce Maguire, Vere Berger and Mary Joyce • Sir Charles Gairdner Hospital, WA

Abstract A retrospective study of adult Western Australian liver transplantation recipients was conducted to determine the extent of postoperative employment and whether psychosocial factors were significant influences. Of 103 transplant recipients interviewed, 57.28% worked post-operatively, of whom almost 75% were male. The likelihood of return to employment was independent of gender, age, indication for liver transplantation, education level, occupation, hours worked, income level or marital status. Statistically significant psychosocial factors which influenced entering the workforce post-transplant included work ethic, motivation, the financial rewards of earning an income, and a desire to contribute to society. The number of members in the household who worked was also a significant predictor for those working after transplantation. Being healthy enough, the importance of the work and having adequate family support were among the factors accorded the most influence in deciding whether to return to work post-transplantation.

Introduction Liver transplantation (LTx) is long recognised as the most effective treatment for patients with end-stage liver failure. Criteria to measure treatment success from a medical perspective are well established. Increasingly, attention is focusing upon quality of life issues for LTx patients — including societal reintegration, community engagement and employment1-6. Newton6, notes that “a patient’s return to work after liver transplantation is an important indicator of functional benefit to the recipient and social benefit to the community”6. Given the taxpayer cost of LTx, societal expectations have been that patients successfully undergoing transplantation will be able to contribute to the community in a significant manner7. As well as demographic data8, a variety of other factors (psychosocial, socioeconomic, clinical and physical functionality) which impact upon recipient ability to work following transplant have been reported in numerous studies6,7,9-11. A significant proportion of recipients find difficulty in rejoining the workforce, and return to work (RTW) rates have been reported variously as between 27 and 67%1,4,6,12-15. Psychosocial factors have become increasingly studied as determinants enhancing quality of life and holistic health outcomes. Of interest is Burns’16 discussion of social

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connectedness, particularly as social isolation has gained a separate status as a contributing cardiac risk factor17. It is not unreasonable to hypothesise that the recovery process after LTx may be similarly influenced. It would also be reasonable to assume that the influence of positive psychosocial factors contribute to the patient’s self esteem — feelings of worthiness and ability to re-engage with society following transplantation. The aim of this study is to identify the relationship between specific psychosocial factors and employment following liver transplantation. For the purposes of this research “return to employment” was used to denote any patient who worked following LTx, whether they were employed prior to the procedure or not. Employment was defined as any activity or service for which wages are paid, and categories of occupation were adapted from the Australian Bureau of Statistics18.

Materials and methods This retrospective study targeted all surviving Western Australian Liver Transplant Service (WALTS) patients who underwent LTx between 1994 and 2009. Those recipients who were too recently transplanted (less than six months post-operative) were excluded from the study, and all participants provided verbal or written consent to take part in the research. 19

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Participants were interviewed in person or over the phone to administer a questionnaire which was developed by modifying and extending an existing instrument with the generous permission of Sammy Saab and his team1. Saab conducted research on employment after liver transplant in California, USA, which included financial perspectives as well as medical outcomes, quality of life and functional measures.

has been projected from the Australian Bureau of Statistics’ figures dated 2002–200319. Figure 1 shows the similar age distribution of participants in the survey compared with those of all LTx recipients. This does not support any argument that transplant recipients may have less likely to participate the research ifto they Figure 1. been Participant age at LTxin compared all were not members of the prime employment age bracket (for deceased patients). example, retired).

The modified questionnaire comprised 62 questions and investigated pre- and post-LTx employment circumstances as well as factors influencing these. The psychosocial factors hypothesised as influencing post-transplant employment were divided into three categories — interpersonal, intrapersonal and environmental.

Due to the small data size, and the large selection of variables to be analysed, the choice for variables to be included in multivariate analysis was limited to those which were significant univariately with a p-value <0.2. Our final model was decided upon using backwards elimination with a significance cut-off of 5%. All variables with higher p-values were discarded. Adjusted odds ratios (OR) and 95% confidence intervals (CI) were calculated for this model. The data from this study was analysed using the statistical package R (version 2.11.1) and tabulated results are provided as an appendix (Tables A, B and C).

Results Representing a participation rate of 65.19%, 103 eligible recipients consented to take part in the research. Demographic analysis indicates that males (at 67%) are over-represented amongst those with end-stage liver disease in Western Australia and over two-thirds of participants were in a married or de facto relationship. Almost 90% of WALTS participants were from English-speaking backgrounds with less than 7% identifying as indigenous Australians. The majority were educated to secondary or tertiary schooling levels. They were transplanted within one year of being activated. Relatively few patients (10.67%) indicated they had other non–liver related comorbidities prior to transplant. As is evident from the accompanying graph, the largest represented age groups (41 to 60) are of prime employment age with the average age at transplantation being 50.26 years of age. This is almost 15 years under Australia’s societally accepted age of retirement from the workforce19. An individual’s peak earning capacity is calculated to be in the 45 to 54 age bracket, based upon the Australian median annual wage and salary income (2009). This capacity is expressed as a percentage of the national median wage and 20

All LTx recipients Respondent age 90 80 70 60

Number

Variables from the data were analysed using both univariate and multivariate regression. The principal multivariate technique to determine which predictors had an impact on the responses was binary logistic regression.

Age Group Comparison

50 40 30 20 10 0

11 to 20

21 to 30

31 to 40

41 to 50

51 to 60

61 to 70

71 to 80

Age Group in Years Figure 1: Participant age at LTx compared to all WALTS LTx patients (including deceased patients).

Illness or indications for LTx have, for statistical purposes been classified into six categories as follows: • Viral includes: hepatitides B and C • Chemical includes: alcoholic liver disease and recreational drug hepatitis • Genetic includes: alpha-1-antitrysin deficiency, Caroli’s disease, Wilson’s disease, Budd-Chiari syndrome and polycystic liver disease • Cancer, that is, hepatocellular carcinoma • Autoimmune includes: primary biliary cirrhosis, autoimmune hepatitis and primary sclerosing cholangitis • Other, which includes: non-alcoholic steatohepatitis, fulminant hepatic failure, hepatopulmonary syndrome, and ideopathic or cryptogenic liver disease. Given the large number of variables and demographics under consideration, for comparison purposes the participants were divided into four sub-cohorts. This information is presented in tabular and graphic forms to more easily identify research

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outcomes. Table 1 enables comparison of those variables which differed sufficiently to generate comment.

Gender and employment Of 103 participants interviewed, 57.28% (47.57 + 9.71) worked post-operatively, of whom almost 75% were male. 72.82% (47.57 + 25.24) of respondents indicated they had worked before LTx, of whom 30.67% were female and 69.33% were male. Of the patients who underwent LTx and had worked prior, almost two-thirds (65.3%) returned to work afterwards. The decreased proportion of women observed in the workforce after their surgery (25.42%), is possibly reflective of previous research which suggested that women found more difficulty adjusting following LTx20. Cowling et al. also reported a higher percentage of men working pre-LTx than women; however, they noted the difference disappeared after two years post-operatively21. Of the 27.19% (9.71 +

17.48) of patients who did not work before LTx, 37.93% joined the workforce and a higher proportion (37.93%) was female.

Alcohol and the hepatitides Contrary to societal expectations, those who had the lowest rates of alcohol/hepatitides indication for LTx were amongst those who did not rejoin the workforce after their surgery. Reinforcing this observation were those transplant recipients who were new to the workforce post-operatively who showed the highest level of alcohol/hepatitides indication of all the sub-cohorts by a substantial margin. This sub-cohort listed their fitness to work, feeling useful while working and contributing to society as major determinants of their decision concerning employment. A possible explanation could be that deciding to join the workforce was a direct outcome of LTx. This is similar to the observation noted

Table 1: Work status matrix — observations of sub-cohort participants.

Worked after LTx

Didn’t work after LTx

Worked before LTx

Didn’t work before LTx

N = 49

N = 10

% of total cohort = 47.57%

% of total cohort = 9.71%

Alc/Hep indication = 49%

Alc/Hep indication = 80%

Mean age = 56.9 years old

Mean age = 50.4 years old

Contributing factor ranking:

1. Motivation

1. Health

2. Work ethic

2. Feeling useful/contributing

3. Health

3. Importance of the work

Receiving government income support = 2.04% both prior to, and after surgery.

Receiving government income support = 71.4% prior to, and none after surgery.

Average MELD score =17.3

Average MELD score = 8.0

Male/female ratio = 75.5/24.5% N = 26

Male/female ratio = 70/30% N = 18

% of total cohort = 25.24%

% of total cohort = 17.48%

Alc/Hep indication = 34.6%

Alc/Hep indication = 61%

Mean age = 48.0 years old

Mean age = 58.67 years old

Contributing factor ranking:

1. Confidence

1. Health

2. Health

2. Family support

3. Family support

3. Confidence

Average MELD score = 15.62

Average MELD score = 17.31

Receiving government income support = none prior to, and 65.4% after surgery.

Receiving government income support = 67% prior to, and 78% after surgery.

Male/female ratio = 57.7/42.3%

Male/female ratio = 55.6/44.4%

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above, with almost 40% of previously non-working women joining the workforce after their operation. Although limited by sample size, the data trend appears to suggest that those patients with alcohol and viral hepatitis have a higher incidence of social re-engagement via work. Reliance upon the public purse in terms of governmental income support was reduced from 71.4% of participants to none. These findings challenge viewpoints which can be characterised by reluctance in offering transplantation to those with end-stage liver disease secondary to alcohol or drug use. On the other hand, the observation could in part be attributed to the WALTS screening protocols for those who have been non-compliant with alcohol abstinence for a minimum of six months prior to activation. Bravata and his team22, who undertook a comprehensive meta-analysis of quality of life, employment and alcohol consumption after LTx are in agreeance with the above finding. Bravata’s work indicated that before transplantation the percentage of participants with alcoholic liver disease (ALD) who worked was lower than those without ALD, but after LTx there was no difference in the rates of employment at 12 months. Furthermore, Zibari’s research23 found that of their cohort of patients who had ALD, 76% were working within a number of months of their LTx.

Financial issues Although half of those working before LTx had exhausted their work leave entitlements prior to transplantation, only 2% received government income support. The length of this support period was less than six months for about half of these patients (54.12%) and more than a year for a minority (21%). There was a temporary, but increased reliance upon governmental income during the recovery period, doubling from 27% to 54.28% before patients were well enough to be able to RTW. The majority (53.06%) of those working both before and after LTx maintained the same income postoperatively, with 26.53% experiencing a decrease in pay and 20.41% an increase. Of participants who didn’t work postLTx, 22.7% retired from the workforce on superannuation or aged pensions.

Psychosocial factors From Table 1 it can be seen that the factors most relevant to those patients returning to their workplace following LTx emphasised motivation, work ethic and health. This set of variables differs from those identified by the other three subcohorts who prioritised differently. It is of note that those who didn’t work after LTx listed confidence as being an important factor in making decisions about employment. There is a significant relationship between RTW and the number of household members working post-LTx, work ethic, feelings of contributing to society, motivation and the 22

perceived importance of wages. Differences are shown more clearly in Figures 3 and 4. Mean Likert scores were calculated and graphically represented as below (responses were rated 1 to 5, where 5 indicated “strongly agree” with the factor being a significant influence in RTW). Participant responses were divided into four sub-groups — those who worked before and those who didn’t (Figure 2), and those who worked after and those who didn’t (Figure 3). The income derived from working was a contributing psychosocial factor significantly correlated to increased chances of RTW (OR 4.714; 95% CI (1.309, 16.974)). This is consistent with the finding that 69% of those who did not Figure 2. Indications forwas LTx participating patients RTW indicated that income notfor a motivating issue. The

Participant indication for LTx Other 12 %

V iral 33%

A utoimmune 22% C ancer 2%

C hemical 24%

G enetic 7%

Viral C hemical Genetic C ancer A utoimmune Other Figure 2: Indications for LTx for participating patients (1993–2009).

difference between the two groups is clearly seen in Figure 3. All participants attributed less significance to the potential loss of government-supported housing and pharmaceutical benefits, and accorded being “healthy enough” as the strongest determinant in successfully gaining employment. The latter finding was contrary to those of Hunt, Camargo, Dominitz, Bute BP and Clavien (1998), who concluded that neither functional status nor the occurrence of medical complications affected post-LTx employment24. Hunt’s earlier research (1996) examined objective versus perceived health status, finding that perceived health status was lowest among unemployed post LTx patients8. Among those who did work pre- and post-LTx, statistically significant and predictive of RTW were motivation to work

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(

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(OR 171.413, CI (7.854, 3741.268)), work ethic (OR 44.380, CI (3.856, 510.838)) and the need to contribute to and participate in society (OR 38.462, CI (2.469, 500)). For transplant recipients returning to work, the majority (60.7%) continued working in the same position, whilst 28.6% changed jobs (only 5% received training post-LTx). From Figure 4, of particular note is the comparative importance accorded to work ethic, being “healthy enough”, motivation to work, and feeling useful when working (by those who were employed) prior to LTx. Comparing Figures 3 and 4, it can be seen that following LTx, employer support becomes a more relevant factor in the workplace.

Other workers in the household The chances of RTW following LTx are enhanced if there are two or more other members of the household also working. This relationship was directly correlated when compared to no other working household members (2+ vs none (OR=14.713; 95% CI (2.443, 88.600)). This result may reflect a household work ethic, an expectation or a familial importance placed upon working or the income generated. Additionally, having the support of family may be instrumental in transplant recipients feeling confident in being able to work post-LTx. Although all participants recognised family support as important, patients not working after transplant gave a relatively higher priority to having a supportive family as an important psychosocial factor in influencing RTW decisions (see Figures 3 and 4).

who worked after LTx believed that they had been denied employment at some stage because of their health. Among those who didn’t return to work, double this number (20.45%) stated they had been denied employment for health reasons. There were two explanations considered to interpret this result — firstly that people were too unwell to work but were still attempting to return to or join the workforce. Secondly, it may be a reflection of employers having unreasonable expectations and a lack of understanding of the abilities of people who have undergone LTx. Supportive of the latter explanation was the fact that 10 participants indicated employer and community education regarding LTx would have assisted in their endeavours to RTW. Family support was accorded an even higher rating of influence in deciding whether to work post-operatively; however, there may have been two ways to interpret this result: (i) family members were able to support the patient whilst they were not working, and (ii) family members were supportive of the patient’s efforts to (re)join the workforce. Based upon raw data, the statistical summaries have suggested characteristics which are potential predictors of RTW (those marked by asterisk being statistically significant). The characteristics suggest a person who will:

• identify their primary language as English • have worked prior to LTx after surgery. after surgery. Employer and family support • have access to leave entitlements and government income support Figures 3 and 4 show that ratio the majority of respondents Male/Female Male/Female = 57.7/42.3% ratio = 55.6/44.4% • have other people in the household who also work* indicated employer support was a relatively important • identifyfactors as being pre motivated to work* factor in3:RTW. Of interest is the finding that 10% of for people Figure Mean attributed Likert values contributing transplantation.

Pre LTx mean factor profile 4 Mean Likert score

3.5 3 2.5 2 1.5 1 0.5 of ho Fi us na in g nc ia lc ho ice Tr ai ni ng

St re ss of HC C

Psychosocial factors

Lo ss

pl oy er

Fa m

ily

su pp or

t su pp or t W or k Fi et na hi nc c ia lr ew W or ar k ds im Co po nt r t rib an ut ce e to so cie Fe ty el in g us ef ul Se lf id e He nt it y al th y en ou gh De pr es Se sio lf n co nf i d W en or ce k av ai la bi lity M ot iva t io n

0 Worked Didn’t work

Figure 3: Mean attributed Likert values for contributing factors pre-transplantation.

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• • • • • •

Contrary to the USA experience, it is of note that the socio-

have a strong work ethic* feel useful by being employed have a desire to contribute to society* be more likely to be male have a supportive family and employer be healthy enough to work.

economic factors of occupation and income level were not predictors of post-LTx employment11,25. The different health and welfare systems in Australia may underpin this disparity. Given that the public health system is the only LTx service in Australia, there can be no medical or access advantages in

Discussion More than 57% of the study population worked following LTx, consistent with Aberg’s finding13. Nearly one-third of participants did not need any assistance with work after LTx; however, almost 15% believe that counselling support would have proved beneficial in their endeavours.

having private health insurance.

Implications for social work practice Knowledge of the RTW predictors may enable earlier and easier identification of those at higher risk of not re-engaging

Patients who have positive psychosocial influences, such as motivation, work ethic and a desire to contribute to society, who are confident and value the financial rewards from working will be more likely to RTW. Other predictors include being male, working prior to LTx, identifying English as their primary language and having others (rather than none) in the house also working.

in the community via employment. This would enable social

Perhaps reflective of the fact that end-stage liver disease can affect all types of people across societal strata, of note are the demographic factors which were not statistically significant contributors to RTW. The following were in general agreement with the findings of Hunt et al.8 and included:

facilitation and working towards behaviour change

• Gender • Age at transplantation • Indication for LTx • Length of time awaiting surgery • Education level • Model for End-stage Liver Disease (MELD) score • Occupation • Income level • Number of hours worked Figure 4: status. Mean attributed Likert value for • Marital

workers to target interventions to better assist patients in their post-transplantation adjustment. Strategies could include: • Psychosocial assessment to target research-identified characteristics. • Counselling support, motivational interviewing, group for those requesting work-oriented assistance postoperatively. • If their health permits, assisting patients to make more effective use of the time awaiting a graft and during recovery as a training opportunity or other preparation for (re)entry into the workforce. • Staff education and referral streamlining of governmental re-training agencies. • Employer education, perhaps enhancing information/ awareness access via the production of a brochure indicating the abilities of transplant recipients and realistic expectations, and outlining relevant Australian

contributing psychosocial factorsDiscrimination post LTx. Act 1991). law (for example, the Disability

Em su pl pp oy or er t su pp or W Fi t na ork et nc hi ia c lr W ew or k a C rd im on s po tri r bu ta nc te e to so Fe cie el ty in g us ef Se ul lf id H en ea tit lth y y en o ug D ep h re Se s sio lf co n nf W id or en k ce av ai la bi lit M y ot iva tio n St Lo re ss ss o Lo fH ss CC of ho Fi na us nc in g ia lc ho ic e Tr ai ni ng

4 3.5 3 2.5 2 1.5 1 0.5 0

m ily

Mean Likert score

Post LTx mean factor profile

Psychosocial factors

Worked Didn’t work

Figure 4: Mean attributed Likert value for contributing psychosocial factors post-LTx.

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Appendix: Statistical tables Table A: Modelling all patients

Work post-LTx

MULTIVARIATE ANALYSIS

Yes

Per cent

Total

Comparison

Odds ratio (CI)

H/hold post

overall p-value

None

25.000

75.000

one vs none

One

58.333

41.667

two+ vs none

Two or more

79.487

20.513

two+ vs one

0.0131 3.505 (0.835,14.719) P=0.0866 14.713 (2.443,88.600) P=0.0033 4.197 (0.830,21.223) P=0.0828

Work ethic Agree

73.333

26.667

overall p-value

0.0023

Not agree

14.286

85.714

Agree vs not agree

44.380 (3.856,510.838)

Income

Agree

79.630

20.370

overall p-value

0.0177

Not agree

32.653

67.347

Agree vs not agree

4.714 (1.309,16.974)

Contribute

Agree

65.333

34.667

overall p-value

0.0092*

Not agree

35.714

64.286

Agree vs not agree

0.026 (0.002,0.405)

Motivation

Agree

73.077

26.923

overall p-value

0.0011

Not agree

8.000

92.000

Agree vs not agree

171.413 (7.854,3741.268)

*Following multivariate analysis the effect of this variable is reversed.

Table B: Modelling patients who worked pre-transplant

Work post-LTx

MULTIVARIATE ANALYSIS

Yes

Per cent

Total

Comparison

Odds ratio (CI)

H/hold post

overall p-value

None

26.667

73.333

one vs none

One

68.000

32.000

two+ vs none

Two or more

80.000

20.000

two+ vs one

0.0059 6.644 (1.083,40.747) P=0.0407 31.847 (3.819,265.602) P=0.0014 4.793 (0.779,29.480) P=0.0908

Income

Agree

85.714

14.286

overall p-value

0.0043

Not agree

39.394

60.606

Agree vs not agree

8.986 (1.990,40.577)

Motivation

Agree Not agree

48 1

76.190 8.333

15 11

23.810 91.667

63 12

overall p-value Agree vs not agree

0.0049 45.070 (3.166,641.599)

Table C: Modelling patients who did not work pre-transplant Work post-LTx

MULTIVARIATE ANALYSIS

Yes

Per cent

Total

Work ethic

Agree

64.286

35.714

overall p-value

0.0075

Not agree

7.143

92.857

Agree vs not agree

23.399 (2.325,235.511)

Volume 23 Number 3 – December 2013

Comparison

Odds ratio (CI)

TRANSPLANT JOURNAL OF AUSTRALASIA

• Enlisting worker support (for example, unions) via education/awareness training. • Peer support models focusing upon RTW issues. • Community and public education.

Future research The WALTS utilises a medico-psychosocial model in organ allocation, and hence considers the possibility of medication and follow-up non-adherence risks. Inadequate or absent social support is thus considered a relative contraindication to LTx. Given that family support has been identified in this research as an important determinant in community re-engagement through work, teasing out what is actually defined by the descriptor “inadequate social support” could be illuminating. The Australian welfare system makes provision for services that supplement or substitute many of the supportive functions that family members can provide and these may compensate for the absence or inadequacy of support. Research to determine the quality and nature of family support may further elucidate predictive factors of post-operative functionality and reintegration.

Acknowledgements The researchers wish to thank and acknowledge the assistance of Nadine Hall, Penny Cantor López, Cecily Gilbert and Sammy Saab. We wish also to express our gratitude for the invaluable statistical analysis and advice provided by the Centre for Applied Statistics, the University of Western Australia. The Sir Charles Gairdner Hospital Allied Health Research Fund is gratefully thanked for funding this project.

Statement of interest The authors have no conflict of interest with any commercial or other associations in connection with the submitted article.

References 1. 2.

3. 4. 5.

6. 7.

Saab S, Wiese C, Ibrahim AB et al. Employment and quality of life in liver transplant recipients. Liver Transplantation 2007; 13(9):1330–1338. Parolin MB, Coelho JC, Costa PB, Pimentel SK, dos SantosNeto LE & Vayego SA. Return to work of adults after liver transplantation. Arquivos de Gastroenterologia 2001 Jul–Sep; 38(3):172–175. Rongey C, Bambha K, Vanness D et al. Employment and Health Insurance in Long-Term Liver Transplant Recipients. Minnesota, USA: Blackwell Publishing Ltd, 2005. Gane E, McCall J, Streat K et al. Liver transplantation in New Zealand: the first four years. The New Zealand Medical Journal 2002 Aug; 115:1159. Paterson DL, Gayowski T, Wannstedt CF et al. Quality of life in long-term survivors after liver transplantation: impact of recurrent viral hepatitis C virus hepatitis. Clinical Transplantation 2000: 14: 48–54. Newton SE. Relationship of Hardiness and Sense of Coherence to Post-liver Transplant Return to Work. Holistic Nursing Practice 1999; 13(3):71–79. Neuberger J, Adams D, MacMaster P, Maidment A & Speed M. Assessing priorities for allocation of donor liver grafts; survey of public and clinicians. British Medical Journal 1998; 317:172–175.

10.

11.

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14.

15. 16. 17.

18.

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22.

23.

24.

25.

Hunt CM, Tart J, Dowdy E, Bute B, Williams D & Clavien P. Effect of Orthotopic Liver Transplantation on Employment and Health Status. Liver Transplantation and Surgery 1996; 2(2):148–153. Newton SE. Relationship between depression and work outcomes following liver transplantation; the nursing perspective. Gastroenterology Nursing 2003 Mar–April; 26(2):68–72. Robinson LR, Switala J, Tarter RE & Nicholas JJ. Functional outcome after liver transplantation: a preliminary report. Archives of Physical Medicine and Rehabilitation 1990 May; 71(6):426–427. Sahota A, Zaghla H, Adkins R et al. Predictors of employment after liver transplantation. Clinical Transplantation 2006 Jul– Aug; 20(4):490–495. Kousoulas L, Neipp M, Barg-Hock H et al. Health-related quality of life in adult transplant recipients more than 15 years after orthotopic liver transplantation. European Society of Organ Transplantation 2008; 21: 1052–1058. Aberg F, Rissanen AM, Sintonen H, Roine RP, Hockerstedt K & Isoniemi H. Health-related quality of life and employment status. Liver Transplantation 2009 Jan; 15(1):64–72. Pichlmayr R, Mauz S, Repp H & Frie U. Progress in surgery and quality of life, quality of life after organ transplantation. Deutsche Gesellschaft Fur Chirurgie, Kongress 1989; 93–97. Adams PC, Ghent CN, Grant DR & Wall WJ. Employment after liver transplantation. Hepatology 1995 Jan; 21(1):140–144. Burns CM. Social Support and Cancer Care. Flinders University, Australia, August 2008. Bunker SJ, Colquhoun DM, Esler MD et al. Stress and coronary heart disease: psychosocial risk factors. The Medical Journal of Australia 2003; 178(6):272–276. The Australian Bureau of Statistics. Australian Standard Classification of Occupations (ASCO) Second Edition, 1997. Available at: http://abs.gov.au/AUSSTATS/abs@.nsf/allprimar ymainfeatures/4B8C877612EC0AE4CA2571E5007A6B27. Accessibility verified 16 April, 2013. ABC Diamond Facts and Figures about Australia (2009). Available at: http://www.abcdiamond.com/australia/australianmedian-wage/. Accessibility verified 16 April 2013. Blanch J, Sureda B, Flavia M et al. Psychosocial adjustment to orthotopic liver transplantation in 266 recipients. Liver Transplantation 2004 Feb; 10(2):228–234. Cowling T, Jennings LW, Goldstein RM et al. Liver transplantation and health-related quality of life: scoring differences between men and women. Liver Transplantation, 2004 Jan; 10(1):88–96. Bravata DM, Olkin I, Barnato AE, Keeffe EB & Owens DK. Employment and alcohol use after liver transplantation for alcoholic and non-alcoholic liver disease: a systematic review. Liver Transplantation 2001; 7(3):191–203. Zibari GB, Edwin D, Wall L et al. Liver transplantation for alcoholic liver disease. Clinical Transplantation 1996 Dec; 10(6 Pt 2):676–679. Hunt CM, Camargo CA Jr, Dominitz JA, Bute BP, Clavien PM. Effect of postoperative complications on health and employment following liver transplantation. Clinical Transplantation, 1998 Apr; 12(2):99–103. Thomas DJ. Returning to work after liver transplant: experiencing the roadblocks. Journal of Transplant Coordination 1996 Sep; 6(3):134–138.

Registry Australian New Zealand Clinical Trials Registry (ANZCTR) registration number is ACTRN12609000397213. The Trial Number is 083838. Study approved by Ethics Committee and Scientific Review Board of Sir Charles Gairdner Hospital.

Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Australasian Transplant Coordinators’ Association (ATCA) Paul Robertson • ATCA President By the time this issue has gone to print we will have hosted the 2013 ISODP conference in Sydney. I hope that you will have all enjoyed the meeting and had the opportunity to enjoy all that such a meeting has to provide. The ATCA AGM will also have been held during this meeting. Plans are underway for consideration of the future ATCA meetings with more news on that front coming soon. The biggest change to Co-ordination for the sector in Australia is now on our doorstep. The introduction of the EDR has commenced with the “paper version” currently being introduced. This is in preparation for the Go Live date

in 2014. This will of course be a major advance in the field and provide many significant advantages over the current system. Alongside that has been the recent introduction of the ATCA SOP’s. Our thanks and appreciation goes to Fran and those involved in the development and introduction for their hard work to ensure the development and effective implementation. Regards & Best Wishes, Paul Robertson ATCA President

DIARY DATES 2014 For more information, check out the links on the TNA website http://www.tna.asn.au 9–12 April 2014 ISHLT — The International Society for Heart & Lung Transplantation 34th Annual Meeting and Scientific Sessions

26–31 July 2014 World Transplant Congress San Francisco, CA, USA

Manchester Grand, San Diego, CA, USA

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Volume 22 Number 3 – December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

TNA CONFERENCE REPORT

2013 TNA Conference Report Allyson Newman • NSW/ACT Branch President

I still cannot believe that the 2013 Conference has come and gone already! It seems not too long ago that Jane Mawson suggested that Claire West and I to start thinking about the 2013 Conference. So an expression of interest was sent out we were fortunate to establish the following organising committee: Tania Burns, Fiona Burrell, Michelle Harkess, Vicki Jermyn, Jane Mawson, Colleen Munro, Allyson Newman, Rowena Nilsson, Pauline Paul, Janine Sawyer, Myra Sgorbini and Claire West. On 18th January 2012 we held our first meeting and from there we did not stop! Fuelled by Fiona’s baked goodies, we met monthly to ensure nothing was left to the last minute or forgotten. Our TNA members are so diverse and include nurses and staff from heart, lung, liver, kidney, pancreas, tissue, donation services, allied health, paediatric and surgical specialties. Therefore, it was always going to be challenging for us to develop a program that would be relevant and meet the needs and expectations of all our members. Additionally, given the lack of post graduate transplant courses in Australia, we were conscious of the fact we needed to ensure the content was advanced enough to challenge the experienced and senior practitioners amongst us, whilst also encouraging our newer transplant colleagues to attend and develop their knowledge. That in mind, the theme for the conference was ‘Complexities of Transplantation: Building Knowledge and Expertise’ to reflect that we never stop learning and building our

knowledge and skill bank when working in the ever evolving field of transplantation. It is an understatement to say how proud we are to work with the nurses, surgeons and physicians that we do in NSW/ACT, and we were happy to share them with our interstate and international colleagues for the week. I felt the program was particularly strong this year due to the high calibre speakers and the range of topics that often transcended organ groups. We were very pleased to have Professor Cynthia Russel attend from the United States as our Keynote Speaker. I personally was very moved by her enthusiasm and passion for transplant nursing and learnt a lot from her presentation on ‘Improving Medication Adherence in Transplantation’. It has already made me re think the way I speak to my patients in pre transplant education sessions.

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TRANSPLANT JOURNAL OF AUSTRALASIA

We were also very fortunate to have Veronique Biche, who has been instrumental in establishing a deceased donor kidney transplant program in New Caledonia, come and share with us her experiences. Yael Cass, CEO of the Australian Organ and Tissue Authority, provided us with an update of the developments in the Donation Sector, including the increased national donation rates, prospective growth and the Electronic Donor Referral (EDR). The abstracts submitted for consideration this year were of exceptionally high quality and I would like to congratulate you all on the excellent work that you are doing and encourage you to continue to do so in the future. In particular, I would like to congratulate our prize winners for 2013: Best Paper: Sharon Lawrence, ‘Body Mass Index Post Transplant and the Impact on Lung Function’. Best Poster: Bronwyn Hayes, ‘Meeting Patients Where They Are: The Use of Telehealth in Transplant Care’.

to network professionally, and also get to know each other more personally. Finally, I would like to say that being on the TNA state executive over the last few years and being involved in the conference organising has been extremely rewarding and I would strongly encourage anyone considering taking up an executive role to speak with their state representatives. I am looking forward to the 2014 conference in Western Australia and hope to see you all there.

Best First Time Presenter: Susan Virtue and Karen Carlon, ‘HIV in Renal Transplantation: Titrating Anti-retroviral Medications with Immunosuppression Therapy’. The 2013 conference was indeed a success, which was only made possible due to the support and the positive representation of the Transplant Nursing Profession that was provided. With 170 delegates, it was one of our biggest years ever. Whilst I personally regret some of my tragic dance moves, the social activities provided a fantastic opportunity

Volume 22 Number 3 – December 2013

Volume 22 Number 3 â&#x20AC;&#x201C; December 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

2013 TNA CONFERENCE WINNING ABSTRACTS

Best Poster: Meeting Patients Where They Are: The Use of Telehealth in Transplant Care Bronwyn Hayes • Cairns Base Hospital, QLD

This poster will outline how telehealth consultations via videoconferencing is being used by a large regional renal unit to provide innovative ongoing care to remote patients in the post-transplant phase. A discussion on difficulties that have arisen will also be included. Telehealth is the use of telecommunication mediums that aid in the provision of care to patients who live large distances from specialist care. The use of this form of technology allows transplant patients from remote areas to access specialist care without the need to take time off work and travel long distances. This has led to increased patient satisfaction without affecting patient outcomes. Attendance at telehealth appointments has led to transplant specific education for

remote medical and nursing staff leading to improved collegiality. The use of consultations via videoconferencing in the post-transplant patients is poorly reported in literature but anecdotal evidence from our unit suggests that patients are highly satisfied with this form of consultation and allows patients to remain in their remote locations negating the need for long and expensive travel without compromising outcomes. Teleconsultations via videoconferencing can be used effectively in the post-transplant phase with success and does not diminish the role that the caring renal team have but rather improves collaboration between the patient and the wider healthcare team.

Best First Time Presenter: HIV in Renal Transplantation: Titrating Anti-retroviral Medications with Immunosuppression Therapy Susan Virtue and Karen Carlon • Royal Prince Alfred Hospital, NSW.

HIV was previously considered a contraindication to solid organ transplantation. With advancements in antiretroviral treatments however, we are now able to perform kidney transplants in this challenging co-hort. Mr DJ is a 58 year old male of African descent with ESKD from hypertensive nephrosclerosis. He was commenced on peritoneal dialysis in 2003 and transitioned to haemodialysis until he was transplanted from a deceased donor in April of 2013. He was diagnosed with HIV in 1993 which is believed to be transmitted via blood transfusion. His antiretroviral medications included a combination of Lopinavir + Ritonavir (kaletra), Didenosine and Lamivudine. He maintained CD4

Volume 22 Number 3 – December 2013

counts above 200 with an undetectable viral load, so was deemed suitable for transplant. First HIV positive kidney transplant recipient at Royal Prince Alfred Hospital providing framework for future transplantation. Altered Tacrolimus regime due to significant interaction of Tacrolimus with Ritonavir seen here with a Tacrolimus level over 30. The level remained above 20 two weeks post-transplant. Immunology ceased Kaletra and commenced Raltegravir which has considerably reduced the Tacrolimus level. Mr DJ had delayed graft function, biopsy showed ATN, usual protocol followed. The elevated Tacrolimus level was a factor in his delayed graft function. Universal precautions observed as standard. 31

TRANSPLANT JOURNAL OF AUSTRALASIA

2013 TNA CONFERENCE WINNING ABSTRACTS

Best Paper: Body Mass Index Post Transplant and the Impact on Lung Function Sharon Lawrence and Rosemary Cowden • Royal Perth Hospital, WA

It is a well documented fact that the prevalence of obesity

Nine percent of individuals where outside the recommended

in society is increasing and that the impact of this on

BMI range at the time of transplant. The results show that

individuals’ health and the consequent health cost is

through all time points there is a gradual increase in BMI

considerable. Weight as calculated by the body mass index

and by the third year the vast majority have a BMI greater

(BMI) has also been shown to be an influencing factor in long term transplant outcomes, through comorbidities and graft loss. This retrospective clinical audit examines BMI’s peri-operatively and at select time points post-transplant and the relationship to the development of Bronchiolitis Obliterans Syndrome (BOS).

than 25 regardless of transplant indication. The prevalence of BOS in the transplant population was 18.1% by 2 years and 22.7% by 3 years. Despite all recipients being encouraged to maintain their weight within a healthy range, almost all recipients

The WA Lung Transplant program has transplanted 80

experienced weight gains. On average recipients gain 8kg in

patients. All eligible selection criteria were met along with

their first year and that 40% of all transplant recipients are

the suggested recommendations of the BMI between 18 and

obese at 5 years, no correlation could be identified between

30. In addition all patients were required to participate in

BMI increases and the development of BOS.

structured exercise programs, receive dietary advice and ongoing clinical review.

S T AT E E X E C U T I V E NSW/ACT

SA/NT

President & Treasurer Allyson Newman Allyson.Newman@sswahs.nsw.gov.au (02) 9515 7549

President

Secretary Jane Mawson jane.mawson@email.cs.nsw.gov.au (02) 9515 7630 QLD President Phil Bettens Phillip_Bettens@health.qld.gov.au Secretary Trish Leishfield trish_leisfield@health.qld.gov.au Treasurer Sue Rixon sue_rixon@health.qld.gov.au

Jane van der Jeugd jane.vanderjeugd@health.sa.gov.au (08) 8204 6617 Secretary Nicole Williams

Secretary Lauren Mitchell l.mitchell@alfred.org.au (03) 9076 2164 Treasurer Emily Langley emily.langley@austin.org.au (03) 9496 5841

nicole.williams2@health.sa.gov.au

(08) 8204 5819

President Corina Jary corina.jary@health.wa.gov.au (08) 9224 2244

Treasurer Libby John libby.john@health.sa.gov.au (08) 8204 5819 VIC/TAS President Jennifer Hislop J.Hislop@alfred.org.au (03) 9076 2823

Secretary Robyn Kovac robyn.kovac@health.wa.gov.au (08) 9224 2244 Treasurer Trevor Cherry trevor.cherry@health.wa.gov.au (08) 9224 2244

Volume 22 Number 3 – December 2013

For nurses and health professionals interested in organ donation and transplantation ...

Transplant Nurses’ Association Inc. Your opportunity to contribute significantly to standards of care for donors, recipients and their families.

Goals

✦ Education to heighten public awareness of the issues surrounding organ donation and transplantation and to increase the knowledge and skills of health professionals involved in the transplant process. ✦ Participation in policy decisions in relation to transplantation for all health professionals specialising in this field. ✦ Networking with health professionals locally and globally in the areas of bone marrow, heart and lung, kidney, pancreas, liver and tissue transplantation.

Activities

✦ The TNA Annual Conference is held on a rotational basis between states, with members invited to present papers or other material for discussion. ✦ Meetings are held quarterly by each state branch and feature guest speakers, with supper provided. ✦ The Transplant Journal of Australasia is published triannually, provides a forum for enquiry into ethics, advances in transplantation, nursing research, patient outcomes and issues of interest to health professionals in this field. Of international standing and listed with CINAHL, the TJA is researched and produced by TNA members. ✦ The TNA website at www.tna.asn.au provides up-to-date information on the Association’s activities, including the annual conference, the TNA state branch meetings, membership and lots more.

Benefits

✦ Grants are offered to provide financial assistance for members pursuing research projects. ✦ Funding can be provided for relevant educational endeavours. ✦ Associate membership is available for allied health professionals. ✦ Reciprocal arrangements with other professional organisations to allow entry to their relevant conferences.

Membership

Return form with credit card details, or cheque/money order made payable to: Transplant Nurses’ Association National Treasurer, TNA Inc. Box M94, PO Missenden Road Camperdown, NSW 2050 Australia

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1 year membership $70 + GST ■ ■ 2 year membership $130 + GST Fees exclude GST, payable annually on 31 August

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