Tja july 2013 lr by WorldWeb Group

Transplant Journal of Australasia Volume 22 No 2 July 2013

“If a window of opportunity appears — don’t pull down the shade” Thomas J Peters 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 Secretariat Shoma Mittra Tel 0433 558 125 Email secretariat@tna.asn.au Treasurer Julie Pavlovic Tel (03) 9496 3972 Fax (03) 9496 3487 Email treasurer@tna.asn.au 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

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.

TNA National Executive report

Editorial Board

Editorial 4 Guest editorial

Pete’s Big Red Challenge Peter Williams

Articles

Waiting for a kidney transplant in Australia — latest trends

Tania Burns

Breaking down the barriers:

Indigenous transplantation in the northern territory

Kerry Dole

Two VADs and a baby

Charmian Bolger & Louise Salter

DonateLife Thanks giving and Remembrance Services 29

ATCA report

Diary dates

State Executive

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 2 – July 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 The conference provides a great opportunity to TNA members will have received an email earlier this year introducing our new Secretariat Shoma network with other transplant health professionals Mittra. We welcome Shoma to the association from around the country, particularly during and look forward to working with her. She can be the Special Interest Group meetings which are contacted on secretariat@tna.asn.au. Shoma has scheduled into the programme. The TNA AGM a busy time ahead as our membership renewal will also be held during the conference, at which period approaches. Membership renewals are an election will take place for the position of due 31 August and reminders will be sent out TNA President Elect. A call for nominations for to members soon. Please note that there has this position will be circulated in August and I been a slight increase in TNA membership fees urge you to consider this role for yourself or a Libby John commencing August 2013. Due to rising costs and colleague. The President Elect sits on the National a decline in income, the TNA Executive has had Executive for 12 months, prior to assuming the to implement the new fees as follows: one-year membership National President’s position for two years. This 12-month $70 + GST and two-year membership $130 + GST. Combined lead-in provides time to become familiar with the National TNA/TSANZ membership is $110. Members will continue to President’s role and the running of the association. Please receive all the benefits of TNA membership such as three contact me or any of the current National Executive should editions of the TJA per year, free attendance at state branch you wish to obtain more information about these roles. education sessions, discounted TNA conference registration and financial scholarship opportunities for conferences and Vacancies also exist on the TJA Editorial Board, and educational events. expressions of interest are welcomed from TNA members who In other TNA Executive news, work is under way on updating the content on the TNA website www.tna.asn to make it more current and informative. The TNA Facebook page is also an excellent source of information for current transplantrelated events and news. Just search for Transplant Nurses’ Association and “like” our Facebook page. The 2013 TNA conference is only four months away on 24 and 25 October in Sydney. The programme, registration and accommodation details can be found on the TNA website conference page (www.tna.asn.au and follow the prompts).

would like to be considered for Editorial Board membership. TJA Terms of Reference are available on the TNA website and further information can be obtained by contacting me on secretary@tna.asn.au or TJA Editor Tracey Mackay tjaeditor@tna.asn.au. I look forward to seeing many of you at the Sydney conference in October. Libby John TNA National Secretary

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 2 – July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

EDITORIAL

When one benefits from a favourable circumstance

specifically targets the challenges faced by the

or lucky break, we reflect on these situations as

service providing renal and transplant care to the

opportunities. As the sayings go, ‘an opportunity

Indigenous population in the Northern Territory.

not to be missed’, ‘it’s a golden opportunity’,

Both of these articles identify the opportunities

‘there was a window of opportunity’ or ‘when

that have arisen for the benefit of the patient

opportunity knocks …’ These disguised, but life-

Tracey Mackay

changing circumstances are actually present all

and the benefit of the renal transplant services of Australia.

around us; we need to be vigilant and open to acknowledge situations that present us with opportunity.

Finally, Charmian Bolger and Louise Salter present an

These circumstances may involve social, emotional or

emotional story in their article ‘Two VADs and a little baby’.

financial opportunities that we do not even recognise as

They explain how their nursing skills and professional

such.

boundaries were stretched as they cared for a young mother,

The theme of this edition of the TJA is opportunity. The

her infant child and traumatised partner. Not only were

opportunities discussed in this edition involve us, the

they faced with this exceptional opportunity to expand their

professionals and then the ripple effect that involves the

professional ability, in this particular case they had the

patients, their families and the community — so one

opportunity to learn and manage the first continuous-flow

opportunity can actually benefit many.

BiVAD.

I have invited Mr Peter Williams to write our guest editorial

In this edition, you will also find personal opportunities:

in this edition. Pete is an amazing man who, with the encouragement and support of family and friends, rode his

The opportunity to learn and network at the Annual National

bike and walked his way from Canberra to Melbourne —

Transplant Nurses’ Association Conference which will be

eight days riding and eight days walking, a total of 724.2

held in Sydney, 2013 — see advertisement for details.

kilometres. During this time, he also required regular dialysis — provided for him by regional units on his path. I was privileged to walk with Pete (the last kilometre) as he strode into the Royal Melbourne Hospital (RMH). Pete took on this challenge as an opportunity to raise awareness of kidney disease across Australia, to inspire those on dialysis to increase their own personal level of activity and to thank the

The opportunity to become an editorial board member for TJA — join our team. The opportunity to receive a scholarship from the TNA to attend and participate in other relevant conferences — either interstate or overseas.

dedicated professionals who ensure life can still go on. Pete’s

To finish, I would like to leave you with some parting words

personal effort has had a huge impact on his health and, of

of inspiration to encourage you to grab opportunity with both

course, has enabled him to be fit enough for transplant. He

hands and make it work for you.

has also raised money for the RMH dialysis service. Please take the time to read about this Everyday Hero. The three articles that I have chosen for this edition have aspects of opportunity. The first two articles complement each other. In her article ‘Waiting for a kidney transplant in Australia — latest trends’, Tania Burns discusses the availability, equity and

Singer, songwriter Pete Murray captures the essence of lost opportunity in his song ‘Opportunity’: And so it goes another lonely day You’re savin’ time but you’re miles away Your fly was drownin’ in some bitter tea For seeing lost opportunity

service provision developments that have influenced kidney transplantation in Australia, over a 10-year period. Following

Find your mirror go and look inside

on from this theme, Kerry Dole discusses the identified trends

And see the talent you always hide

in more detail in her article ‘Breaking down the barriers —

Don’t go kid yourself well not today

Indigenous transplantation in the Northern Territory’. She

Satisfaction’s not too far away

Volume 22 Number 2 – July 2013

Novartis is very proud to support the Transplant Nurses Association

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.

TRANSPLANT JOURNAL OF AUSTRALASIA

GUEST EDITORIAL

Pete’s Big Red Challenge Peter Williams

Background On 24 December 2011 I started dialysis at Epworth Hospital, just outside the Melbourne CBD. Whilst I had known for at least 18 months that this was inevitable, the fact that I commenced thriceweekly dialysis on Christmas Eve certainly did not make the experience any better. This actually was the culmination of a low point in my journey. In the previous October I had three serious accidents, in the worst of which I crashed a farm tractor into a tree and tail-gated a Mercedes into a Holden. In each case I had blacked out. These experiences had me off to hospital in November to have an operation to install a fistula into my left wrist in expectation then that shortly I would need to commence dialysis. I had first learned that I had kidney disease in 1998, in the form of IgA nephrology with the decrease in kidney function having been traced back to a bout of Ross River Fever contracted in 1986. Drugs maintained the kidney function until 2010 when persistent headaches were a sign that stability was coming to an end.

In all these centres I was exposed to a variety of patient issues and felt that depression and disappointment at one’s lot in life was a constant theme. This observation early in my life as a dialysis patient coupled with the desire to develop a level of health that would enable me to receive a transplant kidney, encouraged me to seek and find ways to maintain a higher level of self-respect. From research I found an article written by an American Dr Patricia Painter, ‘Exercise a guide for people on dialysis’. Fortunately, I have in my life had a history of sport and setting a regime around a defined exercise programme which suited my rather determined nature. So I decided to start walking. The concept is to walk till you are sweating and then keep going for another two hours, in doing so, sweating excess fluid and unwanted salts. So my initial programme involved walking between 12 and 15 kilometres at least four times a week. By August last year I was alternating the walking with riding a bike 35–60 kilometres on alternate days. My nephrologist Professor Ian Fraser, who incidentally had been the person to diagnose my fate in 1998, noted that my personal effort was having a huge impact on my vitals and my ability to meet the requirements for a transplant. Ian, upon hearing just how much exercise I was undertaking, suggested I needed to have an end goal and so the idea of Pete’s Big Red Challenge was born.

Pete’s Big Red Challenge Initially my good friend John McMullan and I thought the befitting ‘Challenge’ would be to walk from Canberra to Melbourne; however, to be able to do this we would need some form of mobile dialysis unit because in Southern NSW, Wagga is the only dialysis centre available south of the ACT.

Anne, James and me

I must now undergo dialysis three times a week to survive, and have done so as I have to maintain some degree of professional life as a consulting engineer in many places: Townsville, Caloundra, Allamanda on the Gold Coast, Lindfield near Sydney, North Shore Hospital, Sydney, Wangaratta, Epworth Hospital in Melbourne and my now home unit Yarrawonga, a small three-chair unit. 6

Kidney Health Australia (KHA) were talking of the Big Red Bus and that it would be available for us by early 2013. When the news was finally delivered that this could not happen we decided to proceed with eight days walking and eight days riding a push bike. The aim was to raise awareness of the dedicated professionals, particularly in rural Australia, who ensure life can still go on for dialysis-dependent people and perhaps more importantly to inspire those on dialysis to increase their own personal level of activity. So finally Pete’s Big Red Challenge started, with Pete and a team of friends walking out of Canberra on 18 May 2013. After eight days walking and eight days riding a bike I would arrive at Melbourne on Sunday 2 June 2013. The riding leg

Volume 22 Number 2 – July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

John McMullan — a business partner for some 17 years, an all-round good guy and a great rider, he not only helped by making available his office resources and team to help with planning and logistics. But then acted as my key riding partner on the eight days we rode.

was a means of covering the distances between rural dialysis centres. In this way we would hopefully demonstrate that end-stage kidney decease need not be a ‘life sentence’ and raise critical funds to assist Royal Melbourne Hospital to engage staff to assist and encourage other sufferers to a healthier outcome. Initially, that would mean travelling a total of 701 kilometres in 16 days; however, a major hick-up arose on day three of the challenge. The staff at VIC Roads had failed to respond to emails seeking route approval, despite having the approvals of police and all councils along the route through three states and/or territories. When they finally responded they required us to reroute the final walking legs through the Yarra Valley because they would not permit us to travel by foot or bike on the Hume Highway. This added 128 kilometres to our trip, rerouting us through Beechworth and up perhaps the most difficult section climbing ‘the stinker’, as the locals call it, into Beechworth after leaving Wodonga and finally travelling down the Melba and Maroondah Highways into Melbourne. The logistics for an event involving a dialysis patient means that one must pre-book dialysis centres to a date and time so the effort to walk or ride a given leg needs to be planned to ensure the distance will be covered. After all, one cannot miss dialysis.

The team and sponsorship To complete a challenge like this needs a team and without my team it would simply not have happened. My team were awesome:

Greg Bowman — tour coordinator, an associate from McMullan Solicitors, walked several legs but simply did all the background work to ensure we had insurance, vehicles, beds and organised communications to media, radio, television and those following us on Facebook.

John McMullan, rider extraordinaire, John Anderson, driver, and me

Lisa Donohoe — solicitor at McMullan Solicitors dealt with 37 authorities, councils, and police across three states and territories to ensure we had the necessary permits to proceed. Mike Lindell — friend to all the team and architect, who provided our logo and the cartoons to the Facebook site. The drivers of the support vehicles — John Anderson, Tom Rankin and my wife Anne, who deserves special mention as she not only drove or walked every stage but also tolerated my excessive exercise programme leading to the challenge. My family — James my son who surprised me by turning up to ride five days of the bike leg; my daughter Amanda who walked the length of Maroondah Highway with us and helped in so many other ways including raising funds; my grandson Zachary and his mum Sharon for raising funds and providing morale-building support all the way from Queensland. All the dialysis family members met in Canberra, Wagga, Wodonga, Wangaratta, Seymour and, of course, Royal Melbourne Hospital. Lastly, no event like this can happen without funds. We are proud to report that as it stands we have received sponsorship and donations through the Hero Page website nearing $40,000. A huge thanks to all those who donated and the messages of support were just fantastic. The corporate world did not let us down either. Without you we simply would not have been able to proceed.

Volume 23 Number 2 – July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Zachary, my grandson, organised a message by phone from Queensland Denise Sparkman — one of my best friends who flew down to Melbourne to walk through the Yarra Valley as my walking buddy and raised much-needed funds so the event could proceed

Tracey Mackay (DonateLife / RMH), Peter Williams and Julie Clark (DonateLife / RMH). Anne, Denise, me, my daughter Amanda and driver John

A huge thank you to: Thiess Contractors Pty Ltd McMullan-Williams Leighton Contractors Pty Ltd Boomaroo Nurseries Pty Ltd Hawkins Civil Contractors Pty Ltd

Outcomes We finished Pete’s Big Red Challenge at 1.15 pm on Sunday 2 June when I walked into the foyer of Royal Melbourne Hospital along with some 30 walkers who that day had walked from Kew on the last leg of the Journey. Collectively we were greeted by colleagues, mates, RMH staff and nursing staff who had travelled from their bush locations just to be there. 8

My emotions nearly got the better of me. Michelle from Yarrawonga, who is battling her own demons, discharged herself from hospital to be there. Earlier that day I had realised a little bit of what we had achieved when Rose, a nurse from Wangaratta, said, in answer to my question about why they all felt so proud of what we had done. She said that there are so many dialysis patients who give in on life when someone comes along like you and says, “I am not giving in — in fact, let’s see what we can do with it”. She said that it inspired them to keep trying, keep helping because there might be another Peter Williams around the corner. At the final presentation I made the following observation: I am 63 and a dialysis patient, the level of exercise I do enables me to live quite normally. In fact, other than the fact that I have dialysis three times a week and that costs me 15 hours, I am as fit and healthy as anyone in the room. Volume 22 Number 2 – July 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

Waiting for a kidney transplant in Australia — latest trends Tania Burns • RN, Grad Cert Acute Care Nursing Renal

Abstract Kidney transplantation has been recognised as the best renal replacement therapy for patients with end-stage renal disease (ESRD) in terms of patient survival, quality of life and cost savings. Data from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) has shown an increase in kidney transplants in the 10 years, 2000–2010, with a simultaneous decrease in the number of patients listed as waiting for a kidney transplant, due in part to a rise in the number of live donors coming forward. However, when compared with the number of people on dialysis, the proportion waiting for a kidney transplant has actually decreased. Further analysis of the data shows geographical inequality between the states and territories. An audit was carried out for comparison at St George Hospital (SGH) a non-transplanting hospital in Sydney, and it was found that 24% of SGH dialysis patients were listed for transplant compared to a national average of 11%. Reasons were investigated to explain this variation in the data including ease of access to the service, patient comorbidity, attitude of the nephrologist and the presence of a dedicated recipient coordinator at the hospital. Further research and the setting of national key performance indicators (KPIs) are required to determine the most effective way of ensuring that as many dialysis patients as possible are listed as suitable for transplant with the National Organ Matching System (NOMS).

Introduction Kidney transplantation has been recognised as the best renal replacement therapy for patients with end-stage renal disease (ESRD) in terms of patient survival, quality of life and cost savings1,2. Data from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and the National Organ Matching System (NOMS) shows that in the 10 years from 2000–2010 there has been an increase in the number of people receiving kidney transplants with a simultaneous decrease in the number of people waiting for a kidney transplant3,4. However, in that same time period ANZDATA has also reported an increase in the number of people on dialysis5, including a greater number of elderly people starting dialysis. The net result of these changes is that only 11% of dialysis patients were waiting for a kidney transplant at the end of 2010 compared to 27% in 2000. Further analysis of the waiting list data also shows that there are geographical inequalities between the states and territories4.

patients with a functioning kidney transplant. The number of people waiting for a kidney transplant is reported by NOMS, and is included in the annual ANZDATA report. At the end of 2010, 1158 patients were listed as waiting for a cadaveric kidney transplant in Australia4. ANZDATA reports from the years 2000 to 2010 show a pattern of increasing numbers of people receiving kidney transplants and fewer people being listed on the NOMS waiting list (Figure 1). There has been a marked increase in the number of transplants from 2008, coinciding with the National Reform Agenda6 and a gradual increase in the number of transplants from living donors. When these data are compared with the number of people on dialysis in the same time period, it becomes apparent that the proportion of people currently on dialysis and listed for Figure 1

The aim of this study is to investigate how the national data reported by ANZDATA compares with data from St George Hospital (SGH), a non-transplanting unit in Sydney’s south and to discuss possible reasons for differences.

National data: ANZDATA 2000–2010 ANZDATA collects data from all renal units in Australia and New Zealand and publishes an annual report documenting the numbers of patients on dialysis and the number of 10

Figure 1:

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a kidney transplant, has fallen dramatically. In 2000, 27% of all patients on dialysis were on the waiting list for a kidney transplant, compared to only 11% at the end of 20104,7-9. During these 10 years the criteria for acceptance onto dialysis has widened considerably, with many people being offered dialysis who would not previously have been eligible. This is particularly true of older patients who are now routinely treated with dialysis, but are less often offered the option of transplant. There is no specific age limit for transplantation, but criteria for acceptance include an anticipated survival of five years or more. Studies have shown that transplantation above the age of 75, or above the age of 70 in patients with cardiovascular disease or diabetes has been shown to have no economic benefit10.

patients in Australia aged over 65 are listed for renal transplantation, due to the presence of comorbidities4,9. Analysis of the ANZDATA numbers geographically reveals a marked difference between the states and territories (Figure 4). The Australian Capital Territory (ACT) performs the best with 18% of dialysis patients listed for transplantation. Other states with above average rates are NSW with 15% and Victoria with 12%, but South Australia, Queensland and Western Australia have levels below the national average at 6.3%, 6.4% and 9.4% respectively and the Northern Territory (NT) has only 9 of its 439 dialysis patients (2%) on the Figure 4 waiting list at the end of 20104,9.

When the figures are adjusted to look at only those patients on dialysis and under the age of 74, there is still a significant difference. In 2000, 32% of patients under the age of 74 were listed for transplant, compared to 15% at the end of 20104,7-9 (Figure 2). Further analysis of the national data shows that the 70–79 age group has the largest number of patients on

Figure year2 old

Figure 2:

dialysis, and the 50–59 year old age group has the largest number of people on the transplant waiting list (Figure 3). The number of people on the waiting list over the age of 70 drops markedly with only 25 people waiting for a transplant out of a total 4,005 people on dialysis at the end of 20104,9. Although advanced age in the absence of significant medical comorbidity is not necessarily a contraindication for kidney transplantation, less than 5% of end-stage kidney failure Figure 3

Figure 3:

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Figure 4:

This data raises questions about what proportion of patients on dialysis should reasonably be expected to be listed for a kidney transplant. In the population of patients with ESRD, it would seem unreasonable to expect 100% of patients to meet the suitability criteria for transplant. However, is it acceptable for 18% in the ACT, or 11% in the whole of Australia or 2% in the Northern Territory? To try and establish answers to these questions, further investigation was carried out into the inclusion and exclusion criteria for transplantation, and a local audit of the patients at SGH, Sydney was undertaken.

Inclusion and exclusion criteria for transplantation Inclusion and exclusion criterion for kidney transplantation 19 are clearly listed in the Transplantation Society of Australia and New Zealand (TSANZ) Consensus Statement on Eligibility Criteria and Allocation Protocols11. In order to be activated on the waiting list for a cadaveric renal transplant in Australia, patients must have end-stage renal failure requiring dialysis, meaning that pre-emptive listing for a cadaveric organ is not permitted. There must be an anticipated low perioperative mortality risk, hence the need for screening for surgical complications and cardiac risk factors in the transplant work-up process. There must also be a reasonable postoperative life expectancy with an 80% likelihood of survival for at least five years. The exclusion criteria include medical comorbidities such as cardiovascular disease, diabetes, infection, malignancies, chronic airways 11

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disease, cirrhosis of liver, peripheral vascular disease and cerebrovascular disease. The inability to comply with complex medical therapy is also an exclusion criterion for kidney transplant. A person’s ability to cope with the medical regime of dialysis gives an indication of how they will fare with the large numbers of medications and intensive medical management required after a transplant. Patients who are not compliant with prescribed dialysis therapy may not be eligible for kidney transplant11. The criteria for being accepted onto the transplant waiting list are stringent and to meet them, there is a process of assessment which involves the patient undergoing a battery of tests to demonstrate their suitability. This includes screening for anaesthetic risk factors, cancers and history of exposure to previous infections as well as surgical and medical reviews. Transplanting units are required to report annually to the TSANZ Renal Transplant Advisory Committee, that all patients listed for transplant at their unit have been reviewed each year and meet the transplantation suitability criteria12. Individual nephrologists may choose not to refer their patients for assessment if they are aware of issues that would exclude the patient.

(Table 1). This variance was most marked in the 40–49 year old age group where only 21% of dialysis patients nationally are listed for transplant, compared to 63% of SGH patients. In the 50–59 year old age group, 17% of people were listed nationally, compared to 48% at SGH. Overall, 24% of SGH dialysis patients were waiting for a renal transplant compared to the national rate of 11%. Seventy-two patients under the age of 60 were dialysing at SGH, and of those 34 were not listed for transplant. The cases of these 34 patients were reviewed to establish the reasons why they were not on the transplant waiting list (Figure 5). Several patients had multiple reasons, but the largest number not listed was because of medical or surgical comorbidities. Five were obese, which is a risk factor for perioperative mortality13,14, and previous graft failure which may affect postoperative life expectancy15. There were a Figure 5 number who failed on the grounds of non-compliance.

Local study: SGH data 2012 SGH is a metropolitan hospital in the south of Sydney. At the end of 2012 it had a dialysis population of approximately 240 patients with age trends similar to the national data. SGH is not a transplanting unit, but is part of the East Coast Renal Service, with transplant surgery carried out nearby at the Prince of Wales Hospital, Randwick, and patients returning to SGH within two weeks. An audit was undertaken to determine how many of the patients on dialysis at SGH were also on the waiting list for a cadaveric renal transplant. Compared to the national data, SGH had a higher proportion of dialysis patients in every age group listed for transplant

Figure 5:

Several patients had mental illness including schizophrenia,

bipolar

disorder and chronic depression, and some did not

want to have a transplant. A number of patients were going through the assessment process, and a couple were suitable for assessment, but had social reasons for not being able to complete the necessary testing, such as having no Medicare cover and spending large amounts of time overseas.

Table 1: Comparison of most recent national data (ANZDATA, 2011) to SGH data (November 2012)

Age group

Kidney waiting list (Australia 2010)

Dialysing (Australia 2010)

% of age group on waiting list (2010)

Kidney waiting list (SGH Nov 2012)

Dialysing (SGH Nov 2012)

% of age group on waiting list (Nov 2012)

20–29

237

31%

33%

30–39

151

580

26%

50%

40–49

254

1217

21%

63%

50–59

342

1961

17%

48%

60–69

289

2465

11%

33%

70–79

2701

80+

1343

<1%

Total

1135

10504

11%

240

24%

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Discussion Transplantation has been recognised as the gold standard renal replacement therapy for patients with ESRD in terms of life expectancy and cost savings to the health system1,2. Analysis of the numbers published by ANZDATA over the last 10 years and the comparative local audit carried out at SGH raises questions regarding the number of dialysis patients who are being accepted onto the waiting list for a cadaveric renal transplant. No national key performance indicators (KPIs) or benchmarks exist to suggest what would be an acceptable proportion of dialysis patients to be listed as suitable for transplant, and even if they did, regional differences in screening facilities and the transplantation process may make them unreachable for many renal units. The data raises questions about the resourcing of renal units and the roles of nephrologists and transplant recipient coordinators in ensuring that all suitable patients are given the opportunity to receive a transplant.

Geographical variations in the proportion of dialysis patients suitable for transplant The geographical variations in the number of dialysis patients listed for transplantation when compared state by state range from 18% in the ACT to 2% in the NT. Neither the ACT nor the NT has its own transplanting unit1, but it could be hypothesised that one reason for the difference between these two regions may be the proximity of the patient’s home to screening and transplantation facilities. The ACT has an area of just 2358 km2, compared to the NT, which has an area of 1,349,129 km2 (13,387 km2 of that made up of islands)16. When an organ becomes available, patients from the ACT travel to a transplanting unit in New South Wales (NSW), approximately 300 km away, where they stay for one to two weeks before returning home to be followed up as an outpatient. By contrast, residents of NT living in very remote areas have to relocate to a community area when they go onto the waiting list in order to have access to a care flight service to take them to the transplanting centre when an organ becomes available. Transplants take place in Adelaide, approximately 3000 km away, and patients are required to stay 4–6 weeks following surgery depending on clinical progress before returning home. The impact of this relocation, both at the time of listing and when transplanted, on a patient’s quality of life has not been reported, but may be a contributory factor in the low numbers of dialysis patients seeking transplantation from NT.

suitability status. For example: coronary artery bypass grafts are commonly performed prior to listing for transplant, but gastric banding surgery is not routinely available through the public hospital system. Access to a diabetes service is needed so that patients receive education about managing their disease to prevent the secondary symptoms that may exclude them from suitability for transplant. There is evidence to show that Indigenous groups carry a higher burden of comorbidities than non-Indigenous. In 2009–10, the reported rate of ESRD was 10 times higher among Indigenous people than non-Indigenous17. This increased comorbidity might explain the low proportion of patients listed for transplant in NT, but raises questions about the resourcing of services there.

The role of nephrologists and transplant coordinators Every dialysis patient should have access to a nephrologist and consult with them for routine follow-up several times a year. Nephrologists are ideally placed to identify patients who might be suitable for transplantation, as they evaluate many patients with chronic kidney disease, often well before they need dialysis. However, with increasing numbers of patients to care for and limited clinic time, the nephrologist may not be the most suitable person to oversee the complex assessment process. The transplant recipient coordinator is able to focus on the progress of each person going through the assessment process and provide individual advice and education. With a smaller, more specific patient group than the nephrologist, the coordinator is able to ensure that assessment evaluation takes place and provide advice regarding transplant suitability and acceptance onto the waiting list.

Prevention of comorbidities

The transplant coordinator nurse role was first mentioned in the literature in the 1980s18,19 and initially was related to the organ procurement area of the transplantation process. Over the next decade, the role developed and diversified until, by 1994, a transplant coordinator role that was concerned with supporting and educating the transplant recipient was described20. Although the details of the transplant recipient coordinator role vary between individual units, generally they provide assistance and education to people going through the assessment process and support patients waiting for a transplant. They may also be involved in caring for transplant recipients in the acute postoperative period, ongoing data collection and continuing patient support in the months and years following transplant.

The existence of comorbidities is an exclusion criterion for acceptance onto the transplant waiting list11. More active interventions to reduce the level of comorbidities could be implemented in order for patients to achieve transplant

Each renal unit in Australia has its own group of staff covering the roles of nephrologist, transplant recipient coordinator, acute transplant nurses, dialysis and pre-dialysis education. Several roles may be covered by one or two individuals, and

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there may be others who contribute to the team. In order for every dialysis patient to be considered for transplant suitability a collaborative approach needs to be maintained, with excellent communication between all team members21, as well as regular audits of all dialysis and pre-dialysis patients. No data exists to demonstrate the effectiveness of the transplant recipient coordinator role in maximising the opportunity for transplant suitability assessment and transplant patient outcomes. More research is required to measure the impact of this role upon transplant waiting list numbers and patient outcomes as well as staffing models and optimal staffing patterns22. A demonstrable link between the transplant coordinator role and positive post-transplant outcomes may support the investment of more resources into areas where they are lacking.

SGH local audit data The local audit carried out at SGH showed a higher percentage of dialysis patients suitable for transplant than the national data or any of the individual states, with an overall rate of 23% compared to 11% nationally, or 18% in the ACT, the best performing state/territory. When broken down into age groups the SGH data showed 63% in the 40–49 year old age group were listed compared to 21% nationally, and 48% compared to 17% nationally in the 50–59 year old age group. (Table 1) This may serve to illustrate several of the points discussed. Approximately 80% of patients under the care of the SGH renal unit reside within 20 km of the hospital. All the facilities for assessment are available at SGH and it is only 15 km from SGH to the Prince of Wales Hospital, the transplanting unit. Therefore, for the majority of SGH patients, the impact of being on the transplant waiting list, having surgery and receiving intensive medical management during the initial postoperative period, is far less than for a patient from, for example, the NT. The presence of comorbidities was found to be the most common reason that dialysis patients were not listed for transplant, with 38% of patients under the age of 60 at SGH not listed because of either medical or surgical comorbidity. Levels of comorbid disease among patients from SGH are comparable with the national averages reported to ANZDATA23. The SGH patient population is ethnically diverse, with large numbers from China, Greece, Macedonia, Lebanon, New Zealand and the Pacific Islands. There are relatively few Indigenous patients. SGH has 1.0 full time equivalent (FTE) transplant recipient coordinator for a dialysis population of approximately 240 patients. The recipient coordinator role at SGH includes pre-transplant assessment and annual reviews, as well as 14

data collection for 170 post-transplant patients. The role incorporates only 0.2 FTE at the transplanting unit so acute post-transplant care is minimal, but intensive support and care is provided at SGH for approximately the first three months following discharge. Part of the recipient coordinator’s role is to carry out six-monthly audits of all dialysis patients and liaise with the nephrologists to identify the reasons why patients are not listed for transplant. There are also strong links with the pre-dialysis nurse to identify patients who may be considering pre-emptive transplantation, or who may be suitable for listing when they start dialysis. The transplant recipient coordinator role is central to these activities, and may partly explain the SGH data.

Conclusion Data reported by ANZDATA shows that in the 10 years from 2000 to 2010 the number of transplants each year has increased, and the number of people listed as waiting for transplant has decreased. As a proportion of the number of people on dialysis, however, the number of people on the transplant waiting list has fallen from 27% in 2000, to 11% at the end of 20104,7–9. When considered geographically, the best performing state/territory is the ACT, with 18% of dialysis patients listed for transplant, compared to 2% of dialysis patients in the NT. It seems likely that these inequalities may be explained by differences in the level of comorbid disease of the population, and in the resources and services available. If transplantation is the best renal replacement therapy in terms of patient survival, quality of life and cost savings2, then every dialysis patient should be assessed for transplant suitability against the criteria provided by the TSANZ11. Further research is needed to discover the impact of factors such as geographical location, interventions to reduce the impact of comorbid disease and the role of the transplant recipient coordinator. The development of KPIs regarding what proportion of dialysis patients should be listed for transplant may help units successfully lobby for more investment in staff and resources. In the meantime, we believe that all units should conduct an annual review of their dialysis patients younger than 60, or perhaps 65, to ensure that consideration for transplantation is given to every appropriate patient.

Acknowledgements The data reported here have been supplied by the Australia and New Zealand Dialysis and Transplant Registry. The interpretation and reporting of these data are the responsibility of the Editors and in no way should be seen as an official policy or interpretation of the Australia and New Zealand Dialysis and Transplant Registry. Thanks to Professor Mark Brown and the St George Hospital Renal Department.

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Thanks to Kerry Dole, Renal Transplant Clinical Nurse Consultant, Royal Darwin Hospital.

References 1. Clayton P, McDonald S & Hurst K. Summary. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2011. 2. Overbeck I, Bartels M, Decker O, Hauss J & Fangmann J. Changes in quality of life after renal transplantation. Transplantation Proceedings 2005; 37(3):1618–21. 3. Clayton P, Campbell S, Hurst K, McDonald S & Chadban S. Transplantation. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2011. 4. Wright J. Australian National Organ Matching System — analysis of kidney allocation during 2010: Australian National Organ Matching System, 2011. 5. Grace B, Hurst K & McDonald S. Stock and Flow. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2011. 6. COAG. Council of Australian Governments Communiqué. Sydney, 2008. 7. Russ G. Transplant Waiting List. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2001. 8. Collins J & Kerr P. Method and Location of Dialysis. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2001. 9. Briggs N, Hurst K & McDonald S. Method and Location of Dialysis. Adelaide, South Australia: Australia and New Zealand Dialysis and Transplant Registry, 2011. 10. Jassal SV, Krahn MD, Naglie G, Zaltzman JS, Roscoe JM, Cole EH et al. Kidney transplantation in the elderly: a decision analysis. Journal of the American Society of Nephrology 2003 Jan; 14(1):187–96. 11. Transplantation Society of Australia and New Zealand (TSANZ). Organ transplantation from deceased donors: consensus statement on eligibility criteria and allocation protocols, 2011.

12. Campbell S. Terms of Reference for the Renal Transplant Advisory Committee, 2012. 13. Mullen JT, Moorman DW & Davenport DL. The obesity paradox: body mass index and outcomes in patients undergoing nonbariatric general surgery. Ann Surg. 2009 July 2009; 250(1):166–72. 14. Demaria EJ & Carmody BJ. Perioperative management of special populations: obesity. The Surgical Clinics of North America 2005; 85(6):1283–9. 15. Bertoni E, Merciai C, Becherelli P & Salvadori M. Kidney transplant failure and retransplantation. Giornale Italiano di Nefrologia 2006 Sep–Oct; 23(5):471–9. 16. Australian Government. Area of Australia — States and Territories. 2010 [updated 18/11/10; cited 2013 29/01/13]; Available from: http://www.ga.gov.au/education/geosciencebasics/dimensions/area-of-australia-states-and-territories.html. 17. Australian Indigenous Healthinfonet. Overview of Australian Indigenous Health Status 2011. 2012 [cited 2013 01/02/13]; Available from: http://www.healthinfonet.ecu.edu.au/healthfacts/overviews/introduction#key-facts. 18. Gilman C. Pediatric transplant coordinator. Nephrology Nurse 1980; 2(4):23–5. 19. Van Der Vilet JA & Kootstra G. The transplant coordinator: an answer to the shortage of cadaveric donor kidneys? Netherlands Journal of Surgery 1982; 34(1):1–3. 20. Zimmerman SW, Sollinger H, Wakeen M, Armbrust M, Cole D, Kearney ME & Kalker A. Renal replacement therapy in diabetic nephropathy. Advances in Renal Replacement Therapy 1994; 1(1):66–74. 21. Al-Arabi SA. Quality of Life: Subjective Descriptions of Challenges to Patients With End Stage Renal Disease. Nephrology Nursing Journal 2006; 33(3):285–92. 22. Mcnatt GE. Nursing and transplant coordination: a call for clarity. Progress in Transplantation 2008; 18(3):208–15. 23. Roh K, Josland E, Martinez-Smith Y, Burns T, Meek C, Beddoe J, et al. St George Hospital Renal Department Annual Report and Quality Indicators: St George Hospital, Sydney, 2011.

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ARTICLE

Breaking down the barriers: Indigenous transplantation in the northern territory Kerry Dole • Renal Transplant Clinical Nurse Consultant

Abstract In the Northern Territory (NT) Indigenous Australians are experiencing the highest incidence rates of treated end-stage renal disease (ESRD), nationally (743 per million population per year). ESRD is 18 times higher for Indigenous people of the NT than non-Indigenous people. However, the number of Indigenous Australians receiving a transplant is only one-third of the rate for non-Indigenous people across Australia. For those who do receive a transplant, the outcomes are poor for both graft and patient survival. This article will provide an overview of the historical background of kidney transplantation in the Top End of the Northern Territory, highlighting the reasons for these low rates and the barriers to overcome. Discussion on the strategies required for future growth in the transplant rates and improved outcomes for this population group will be included. Many of the barriers and strategies presented relate to both the Top End and the central region of the NT; however, this article and data presented is written from the Top End perspective unless otherwise specified. The Top End of the NT covers the area from Darwin to Elliot (approx 800 km) extending to the Queensland and Western Australian borders.

Introduction

Barriers to transplantation

Worldwide, kidney transplantation is regarded as the optimal

Geographical location/access to health care services/ relocation to urban centres

form of renal replacement therapy for people with endstage renal disease (ESRD), reducing both morbidity and mortality1. In the Northern Territory (NT) transplantation does not reflect the same picture, but presents numerous barriers and challenges, resulting in poor survival outcomes for the Indigenous Australian patient group. The Improving Patient Access to Kidney Transplant (IMPAKT) study conducted in 2004, identified the following as being barriers to Indigenous Australian transplantation: • Indigenous

Australian

patients

are

interested

transplantation but unsure of the process. • Patient education is not sufficiently targeted to cultural language and literacy needs. • Clinical uncertainties amongst nephrologists as to whether transplantation offers a survival advantage2. In addition, there are barriers such as geographical location, access to health care services, relocation to urban centres, Indigenous Australian health status, longer waiting times on dialysis and medical unsuitability of live donors. For the renal transplant team involved in the provision of Indigenous Australian health, such barriers provide an enormous challenge to health care delivery.

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The NT covers a very large area of over 1,349,129 square kilometres, but, in comparison, it has a very small population which resides mainly in the urban centres. In September 2012, the Australian Bureau of Statistics estimated a resident population of 236,300 which represents 1% of the total population of Australia3. In the 2011 Census, the NT had the highest proportion of Indigenous Australians amongst its population at 29.8%, with 49% of them owning land and living mainly in the remote areas (18%) and very remote areas (63%)4. In remote communities, access to health care is mainly provided through the Department of Health’s community health clinic. Services provided are limited. Many communities do not have a resident district medical officer (DMO) with DMO visits varying in frequency. Clinics are staffed by remote area nurses and Aboriginal health care workers who can access a DMO by telephone. In an emergency situation, a patient can be evacuated from the community by the CareFlight aero-medical service — as a major urban hospital can be thousands of kilometres away. Specialist services are now being provided to these remote communities under the Australian Government initiative of ‘Closing the Gap’— to provide services closer to home for this patient group. Many patients have never left their community 17

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or travelled by plane. As all renal replacement therapy is commenced in an urban centre, patients often experience social isolation and dislocation away from families when they start dialysis. Furthermore, for those considered for transplantation, travel to the urban centre of Darwin or Alice Springs is essential to complete the testing required in the pre-transplant assessment phase. Adelaide in South Australia (SA) is the transplant centre for the NT and is 3000 kilometres away from Darwin and 1500 kilometres away from Alice Springs. Previously patients have been required to move to an urban centre whilst on the transplant waiting list, due to distance and inability to transfer them to Adelaide in a timely manner. Now, under a new initiative of using a chartered airline or CareFlight, patients who are on home therapy are able to stay in their community until called for transplant. After transplantation, patients initially stay in Adelaide for three to four weeks, and then they are required to stay up to six months in the urban centre after return to the NT, to ensure access to specialist transplant services. Many pathology and radiology services utilised post-transplant are either not available or not available in a timely manner in remote communities. Therefore, transplantation may not present as a desirable treatment option when a patient is able to return to community on a home therapy (such as peritoneal dialysis or home haemodialysis) and be with family.

Indigenous Australian health status Indigenous Australians make up 29.8% of the NT’s population and yet they carry the greatest percentage of the health burden, experiencing a 30% higher overall hospitalisation rate than the non-Indigenous population5. Indigenous Australians experience multiple comorbidities at a greater rate than non-Indigenous Australians. They include diabetes (>4 times), obesity, cardiovascular disease (>1.2–1.4), cancer and respiratory problems6,7. All of the risk factors for kidney disease: diabetes, hypertension, infections, low birthweight and obesity are prevalent among Indigenous Australians8. Kidney disease affects Indigenous Australians at a much younger age4. Almost two-thirds of the Indigenous Australians diagnosed with the disease in 2007–2009 were younger than 54 years old. In comparison, less than onethird of non-Indigenous people were younger than 54 years old4. Obesity, in particular central obesity, is common amongst Indigenous Australians which presents a further barrier to transplantation9. Central obesity has been linked to genetics, but regardless of this fact, contemporary Indigenous diets and levels of physical activity are likely to be the crucial factors in the high levels of obesity seen among many Indigenous populations9. The ‘westernisation’ of Indigenous communities has seen the replacement of a varied nutrientdense diet with an energy-dense diet, high in fat and refined sugars9. 18

The disparity of health status between the Indigenous Australian and non-Indigenous population is well documented and complex. Identified factors include a combination of general factors (such as education, employment, income, behavioural choices and socioeconomic status) and factors relating to the health sector (such as not having access to culturally appropriate services or support)1. Therefore, a number of pathways linking disadvantage and kidney disease underlie the high rates of kidney disease experienced in Indigenous Australians — all of which provide an enormous challenge for the government and the health care system.

Patient education The IMPAKT study conducted in 2004 found Indigenous Australian patients were interested in transplantation, but unsure of the process and more educational resources were required2. In particular, the need was for resources that were culturally appropriate and targeted to the literacy needs of the Indigenous Australian population10. Addressing this issue is extremely important, as a patient’s lack of understanding of their health care needs can directly affect their health outcome. As a result of this study, a number of resources have been developed, which will be presented later in this article.

Unsuitability of living donors The increased prevalence of chronic disease and ill health amongst the Indigenous Australian population has led to very few living donors being assessed as medically suitable. Data published by Rogers et al.11, shows outcomes are poor for Indigenous Australians who have donated a kidney. The study was a retrospective analysis of NT living kidney donors since 1985 and included 22 Indigenous Australians and 28 non-Indigenous Australians. As shown in Table 1, they found two donors had died, three were on renal replacement therapy and the majority had an estimated Glomerular Filtration Rate (eGFR) <60ml/min/1.73m. Of these donors, 50% had hypertension, 56% had diabetes and 81% had established proteinuria at levels worse than the general population11. From this information, it was concluded that standardised assessment had failed these Indigenous Australian donors and concerns were raised over the utilisation of living Indigenous donors. In the Top End all the Indigenous Australians assessed for consideration of living donation from 2009 to present have been deemed medically unfit for the same reasons as previously mentioned (hypertension, diabetes and/or established proteinuria)11.

Longer waiting times on dialysis The major source of organs for Indigenous Australians is from deceased donors (for reasons discussed above). Rogers et al.12 suggest the likelihood of an Indigenous Australian receiving a graft is approximately 30% that of their nonIndigenous counterpart. When they do receive a graft, they have generally been on dialysis longer, are more sensitised

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and have a greater number of human leukocyte antibody (HLA) mismatches due to the difference in the genetic pool12.

Kidney transplant outcomes in the Indigenous population in the NT There is limited research available on kidney transplant outcomes for this patient group. However, a retrospective study conducted by Rogers et al. in 200612 highlights poor outcomes for Indigenous Australians. It found, four years post-transplant, 50% of Indigenous Australians had lost their graft, compared with only 10% in the non-Indigenous population (Table 2). The main reason for the graft loss was: death of the patient with a functioning graft due to infection12. Table 3 highlights other causes of graft loss while Table 4 demonstrates the causes of recipient death12.

The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) data of 2011 confirms that infection is still the most common cause of death, affecting 60% of the Indigenous Australian transplant population13. The source of infections varies from skin, urinary tract, respiratory and covers a multitude of organisms inclusive of bacterial, viral and fungal14,15. Other factors associated with poor outcomes include the greater degree of comorbidities, longer times on dialysis, greater sensitisation, longer cold ischaemic times (due to distance to travel to transplanting centre) and greater degree of HLA mismatches12. Patient non-adherence with immunosuppression medication has also been linked to poor outcomes, but there is minimal evidence to support this. The retrospective study by Rogers et al. did not refer to non-adherence as a major cause of graft loss12. The poor outcomes outlined in the data and the fact that Indigenous

Table 1: Analysis of NT living kidney donors 11

Retrospective analysis of NT kidney donors since 1985 Indigenous population (22)

Non-Indigenous population (28)

Deceased

2 (12%)

RRT

3 (19%)

Estimated GFR ≥ 60ml/min/1.73m < 60ml/min/1.73m < 10ml/min/1.73m

3/16 (19%) 10/16 (62%) 3/16 (19%)

10/16 (62%) 6/16 (38%) 0

Blood pressure > 140/80 mmHg

8/16 (50%)

1/16 (6%)

Table 2: Graft survival after renal (12) Diabetes mellitus 9/16transplantation (56%) Proteinuria

13/16 (81%)

0 1/16 (6%)

Table 2: Graft survival after renal transplantation 12

Graft survival after renal transplantation 1.00 0.75

0.50

0.25 p<0.001 0.00 0

4 Years Indigenous

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Table 3: Causes of renal allograft loss 12

Indigenous

Non-Indigenous

43 (54% grafts)

9 (16% grafts)

Death with functioning graft

23 (53%

–

Chronic allograft nephropathy

14 (33%)

8 (89%)

3 (7%)

–

Acute rejection Primary non-function

2 (4%)

–

Withdrawal of immunosuppression

1 (3%) to treat infection

1 (11%) – to treat malignancy

Indigenous (N=23)

Non-Indigenous (N=0)

Infection

17 (71%)

–

Cardiovascular

4 (17%)

–

Hepatic failure

2 (8%)

–

Malignancy

2 (8%)

–

Table 4: Causes of recipient death 12

Australian renal recipients are disadvantaged from the outset, led to clinical uncertainty amongst nephrologists as to the survival advantage transplantation provides to this patient group12. From 2007, the low rates of transplant in the Top End of the NT reflect these uncertainties.

Overcoming the barriers Raising the profile of transplantation From 2010, Top End Renal Services have seen an increase in medical nephrology services employment, from two full-time equivalents (FTE) to 4.5 FTE, with one of the main focuses being to raise the profile of transplantation. Hence, there are more medical staff members to review and refer patients for assessment for transplantation. In response to this increase in medical service resource, there has been an increase in the nursing staff from one clinical nurse consultant to include another registered nurse position equivalent of a total of two FTE. A formal education programme has been established to provide monthly group education sessions in the various satellite dialysis units. In addition, patients are offered further education on an individual basis. The transplant nursing team are now providing education at the outreach clinics in the smaller areas of Katherine, Tiwi Islands and Gove. It is hoped that these education sessions can be extended to other remote communities as the renal outreach programme (nephrology care provided in the remote community) continues to develop. Funding was provided by the Australian Government, Department of Health and Aging and the Office of Australian and Torres Strait Islander Health for the development of culturally appropriate educational resources for all areas of renal replacement therapies, 20

palliation and social work. To date, four books depicting all aspects of looking after yourself in the pre-transplant phase, tests required, surgery in Adelaide and life after having a kidney transplant have been developed. Since 2010, transplant suitability assessment has been performed on all dialysis patients to determine if they are a potential transplant recipient. This assessment was completed in a multidisciplinary setting consisting of the primary nurse, nephrologist and social worker (if available). From these assessments, it was determined that approximately a third of all the dialysis patients were potentially suitable, a third had current issues deeming them not suitable (but would be reviewed at a later designated date) and a third would never be suitable due to a variety of medical and social issues. In response to the IMPAKT study, which highlighted that Indigenous Australian patients are interested in transplantation but are unsure of the process, a ‘pathway to transplant’ has been developed. This is a flow diagram presentation of the pathway a patient needs to go through to receive a transplant. The aim is for all health care professionals and patients to gain an understanding of the process required. This pathway has been in use in an informal manner, but is now being formalised for use on the hospital network system. It is hoped that posters can also be produced so the information can be displayed to patients and health care professionals in urban and remote health care settings. Formation of close links with the DonateLife team here in the Top End of the NT has been extremely valuable in raising the profile of transplantation and organ donation amongst the Indigenous Australian population. DonateLife NT, in conjunction with the Department of Health and

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Renal Services, has produced some excellent educational resources. Books have been developed, including The Brain Story and the Organ Donation Story. A DVD titled If you want to give life was produced using three Indigenous kidney transplant recipients who share their journey of renal disease from diagnosis, commencement of dialysis and their experience of an improved quality of life post-renal transplant. Healthy living posters have also been produced, including a Love your kidneys poster. A theatre piece called Gift of Life was developed by Ben Graetz in association with Artback NT through Australian Government grant funding. The performance follows the journey of an Indigenous Australian woman struggling with ESRD until the time she receives a kidney transplant. It has toured through four NT communities with audiences responding positively, with a further tour planned in mid-201316.

Review of patient outcome data Nephrologists in the NT have reviewed the data on Indigenous Australian transplant outcomes and in conjunction with the NT multidisciplinary team, have developed the following strategies aimed at improving outcomes. • A nephrologist has been appointed to oversee the administrative aspect of transplant service delivery and development. • A coordinated approach to care has been established with the Central Australian nephrology service and South Australian transplant team. A weekly meeting has been arranged to discuss aspects of patient care, research and service development. Data from the last 10 years is currently being reviewed to look at both the NT and SA experience of Indigenous Australian transplantation and outcomes. • A review of immunosuppression levels has been undertaken and identified the requirement of further pharmacokinetic studies. • A review of the pre-transplant assessment process has been carried out to ensure it is robust and includes a psychosocial assessment tool. This psychosocial assessment tool has been developed by the social work department to gain a greater understanding of the patient’s life, future goals and hopes, assessment of literacy level, coping mechanisms, family situation, understanding of preparation required for transplantation and identification of social barriers to transplant. This has proved to be a very valuable tool, utilised to gain a greater understanding of the patient and identification of any potential barriers to transplant that they may face.

Volume 22 Number 2 – July 2013

The future The Top End NT renal transplant team’s plans for the future are based around continuing to raise the profile of transplantation, while trying to improve the outcomes for this patient group. Work will continue on assessing patients for their suitability for transplant, and it is estimated that the current rate of 15–20 transplants per annum will continue as the service seeks to promote successful transplantation. In aiming to improve patient outcomes, nephrologists plan to review the current immunosuppression protocol to identify if an alternative regime would be more beneficial for Indigenous Australian people, for example, dual therapy. The conduction of a pharmacokinetics study in this population group is a very important aspect of revising the immunosuppression protocol. It is well documented that different ethnic groups have different drug profiles17. Patient outcomes will continue to be monitored and a database is currently being developed to improve data collection. Work will continue to bridge the gap between the urban and remote health care settings via education to health care professionals and patients as well as through policy development. The renal outreach programme, which involves nephrologists visiting patients in the remote communities, has already begun and the transplant team is planning to link into this. Education is now being delivered to remote area nurses and allied staff via a renal care coordination workshop. One main area to address as a priority, is improving education delivery to general practitioners (GPs) and DMOs. Some work has been done in this area in the past. Consideration is also being given to the possibility of the NT becoming a transplanting centre. The viability of this has been reviewed previously by Rogers et al.18, who identified significant potential problems. These included adequately trained staff, support services and review of the infrastructure and resources available to sustain long-term viability. Rogers et al. were unsure of the effect a transplant centre would have on outcomes18. These potential problems and possible solutions are being reviewed as consideration is given again to the possibility of the NT becoming a transplanting centre.

Transplant numbers The effects of all these endeavours are slowly coming to fruition, with an overall increase in the number of kidney transplant recipients in the Top End of the NT. In 2007, there were only 45 recipients in the Top End compared to 67 in early 2013, of which 20 are Indigenous Australians. The same increase is also reflected in the transplant waiting list numbers from 2010 as seen in Table 5. In 2012, the NT saw a slight decrease in numbers on the waiting list due to a dramatic rise in the number of patients transplanted in 2011 and 2012. However, as shown in Table 6 the majority of these transplanted patients from 2010 were non-Indigenous Australians — with a total of only 21

18 TRANSPLANT JOURNAL OF AUSTRALASIA

Table 5: Active transplant wait list numbers: Top End NT

12 10 8

Total

Non Indigenous Indigenous

4 2

Table 6: Number of transplanted patients per year: Top End NT

2006

2008

2010

2012

Table 6: Number of transplanted patients per year: Top End NT

12 10 8 Total Non Indigenous Indigenous

6 4 2 0

2007 2008 2009 2010 2011 2012

six Indigenous Australian recipients from the Top End. At

complex medical and social issues and travel to the major

the time of writing (mid-May 2013) the Top End has seen

centres.

five patients receive a kidney transplant, four of whom are Indigenous Australians. Although the number of Indigenous

Conclusion

Australians transplanted remains low, the greatest effect

Renal transplantation in the Indigenous Australian population

of the work to overcome barriers is seen in the increased numbers of potential recipients undergoing pre-transplant assessment (Table 7). In previous years, the numbers of Indigenous Australians undergoing assessment has been as low as four. Currently we have 20 potential Indigenous Australian recipients undergoing assessment, with eight of these patients already having been assessed as suitable for listing, once outstanding medical issues have been resolved. In addition, there are 21 Indigenous Australian patients whose assessment is temporarily on hold due to

of the NT is a very challenging and complex area. Although renal transplant is considered the optimal form of treatment for ESRD, the rates of transplantation are low in this group, even though they are experiencing the highest incidence rates of treated ESRD. The barriers surrounding these low rates have been explored throughout this article; however, the solutions to many of these are complex, multilayered and, for some, are yet to be discovered. Patient inclusion and empowerment is crucial to an individual’s health care

medical and/or social issues, compared to only one non-

outcome and it is paramount that all treating health care

Indigenous Australian patient. These numbers reflect that in

professionals aim to achieve these goals19. This is especially

the Top End potential Indigenous Australian recipients take

so, as the excess burden of disease in remote areas, in terms

longer (average one–two years) to complete pre-transplant

of disease incidence and prevalence and social and cultural

assessment due to the increased degree of comorbidities,

impact of dislocation from family and community to access

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Table 7: Number of patients in pre-transplant work up and on hold: Top End NT

25 20 15

Assessment On hold

10 5

20 13

20 12

20 11

20 10

20 09

20 08

necessary care, vastly amplifies the impact of chronic disease on Indigenous Australian peoples20.

10. Anderson K, Devitt J, Cunningham J, Preece C & Cass A. “All they said was my kidneys were dead”: Indigenous Australian patients’ understanding of their chronic kidney disease. The Medical Journal of Australia 2008; 189(9):499–503. Epub 2008/11/04.

The NT renal transplant team is working to break down these barriers by exploring new ideas and practices. However, it is 11. Rogers NM, Lawton PD & Jose MD. Indigenous Australians and important to recognise that there need to be reductions in living kidney donation. The New England Journal of Medicine the overall disadvantages experienced by many Indigenous 2009; 361(15):1513–6. Epub 2009/10/09. References Australians (the social determinants), otherwise even the 12. Rogers NM, Lawton PD & Jose MD. Kidney transplant outcomes best health services and programmes will have little success in the Indigenous population in the Northern Territory of 1. G.ofGarcia-Garcia PH, J Chapman. of kidney transplantation. Indian Australia. Transplantation 2006; 82(7):882–6. Epub 2006/10/14. in improving the health Indigenous Australian people19.The global role

13. ANZDATA Registry 2011 Report Chapter 12: ESKD Among Indigenous Peoples of Australia and New Zealand; Causes of Death [Internet]. 2013 [cited 2013 Apr 22]. Available from Garcia-Garcia G, Harden P & Chapman J. The global role of http://www.anzdata.org.au/anzdata/AnzdataReport/34thReport/ kidney transplantation. Indian Journal of Nephrology 2012; 2. Cass A, Devitt J, Preece C, Cunningham J, Anderson K, Snelling P, et al. Barriers to 2011c12_indigenous_v1.6.pdf. 22(2):77–82.

References 1.

4. 5.

Journal of Nephrology.2012;22(2):77-82

Majoni SW, Dole K, Jabbar Z, Sundaram M & Perry G. Cass A, Devitt J, Preece C, Cunningham J, Anderson K, Snelling access by Indigenous Australians to kidney14. transplantation: the IMPAKT study. P et al. Barriers to access by Indigenous Australians to kidney Infections: The Achilles Heel of Immunosuppression for transplantation: the IMPAKT study.(Carlton). Nephrology (Carlton) 2004; Renal 2004/12/17. Transplantation and Immunological Renal Disease Nephrology 2004;9 Suppl 4:S144-6. Epub 9 Suppl 4:S144–6. Epub 2004/12/17. Management in the Top End of Northern Australia; Case Australian Bureau of Statistics Australian Demographic Reports. Open Journal of Nephrology 2012; 2(4):60–4. Statistics [Internet].2013 [updated 2012 of Sep 27; cited 2013 3. Australian Bureau Statistics Australian Demographic Statistics [Internet].2013 15. Davis JS, Fisher DA, Huffman SE, Anstey NM, Price RN, Krause Mar 14]. Available from http://www.abs.gov.au/ausstats/abs@. VL, Zweck N, Lawton PD, Snelling PL & Selva-Nayagam S. nsf/mf/3101.0. [updated 2012 Sep 27; cited 2013 Mar 14]. Available fromof opportunistic infections in immunosuppressed Prevention ABS. Australian Bureau of Statistics. ABS, 2011. patients in the tropical Top End of the Northern Territory Australian Institute http://www.abs.gov.au/ausstats/abs@.nsf/mf/3101.0 of Health and Welfare [Internet]. 2013 of Australia. Communicable Diseases Intelligence December [cited 2013 March 12]. Available from http://www.aihw.gov.au/ 2003; 27(4):526–32. hospitalisation-indigenous/. 16. Gift of Life. DonateLife Newsletter 2012 Aug; 3(2). Australian Indigenous HealthInfoNet. Review of diabetes among 17. Yasuda SU, Zhang L & Huang SM. The Role of Ethnicity Indigenous peoples. [Internet]. 2007 [cited 2013 Apr 19]. in Variability in Response to Drugs: Focus on Clinical Available from http://www.healthinfonet.ecu.edu.au/chronicPharmacology Studies. Clinical pharmacology and therapeutics conditions/diabetes/reviews/our-review. 2008; 84(3):417–23. Gray C, Brown A & Thomson N. Review of cardiovascular health among Indigenous Australians. [Internet]. 2012 [cited 18. Rogers NM, Shtangey V, Lawton PD & Jose MD. Northern 2013 Apr 19]. Available from http://www.healthinfonet.ecu.edu. Australian kidney transplant unit: A viable option? Nephrology au/chronic-conditions/cvd/reviews/heart_review. 2007; 12(3):308–13. Australian Indigenous HealthInfoNet Review of the kidney 19. Australian Institute of Health and Welfare [Internet]. 2013 health of Indigenous peoples. [Internet]. 2006 [cited 2013 [cited 2013 March 12]. Available from http://www.aihw.gov.au/ Apr 19]. Available from http://www.healthinfonet.ecu.edu.au/ socio-economic-context-of-indigenous-health/. chronic-conditions/kidney/reviews/our-review. 20. Australian Government Department of Health and Ageing Burns J & Thomson N. Summary of overweight and obesity Central Australia Renal study [Internet]. 2013 [cited 2013 among Indigenous peoples. [Internet]. 2006 [cited 2013 Apr March 12]. Available from http://www.health.gov.au/internet/ 19]. Available from http://www.healthinfonet.ecu.edu.au/ main/publishing.nsf/Content/oatsih_central-renalstudy. health-risks/overweight-obesity/reviews/our-review.

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ARTICLE

Two VADs and a baby Charmian Bolger and Louise Salter • Clinical Nurse Specialists, The Alfred Hospital

Abstract Caring for a patient in the 21st century under the age of 21 in a complex acute tertiary hospital provides many challenges. New technologies associated with bridging to cardiac transplantation, caring for minors in the adult setting, and developing effective plans to enable person-centred care remain the focus of our practice in the face of overcoming the many comorbidities our patients tackle. Our aim is to explore a case study reflecting both the clinical and social issues and evaluate the strategies we as a nursing team implemented to maintain our goal of person-centred care. A 16-year-old female diagnosed with post-partum dilated cardiomyopathy rapidly deteriorated requiring emergency left ventricular assist device (LVAD) implantation and subsequent biventricular assist device (BiVAD) implantation. Her complex postoperative issues included, but were not limited to: sepsis, multiple sternotomies, prolonged intubation and multi-organ dysfunction syndrome (MODS). This patient presented many complex issues affecting the nursing team, both clinically and emotionally. These included apprehension towards caring for the first continuous-flow BiVAD implanted at The Alfred, caring for a minor in an adult setting, fostering the crucial mother–baby bond and maintaining a person-centred approach to the delivery of care throughout her stay. This complex patient scenario provided many challenges both clinically and emotionally — all of which impacted on the journey to transplantation. Through the use of a multidisciplinary team approach and continuity of nursing care, we as a nursing team were able to maintain a level of person-centred care, specific to the patient’s age and social needs, enabling successful bridge to transplantation.

Introduction The Alfred Hospital is the major centre for cardiac transplantation services in Victoria, South Australia and Tasmania. On average our centre performs approximately 15 heart transplants per year in the tri-state region. Ventricular assist devices (VADs) are commonly used to bridge patients to cardiac transplantation or as a bridge to recovery from heart failure. VADs can also be used in select cases to relieve patients of their severe heart failure symptoms if they are not

heart failure1. More recently VADs have been implanted in both the right and left ventricle to mechanically support the patient with end-stage biventricular heart failure until transplant becomes available. Both the LVAD and BiVAD improve quality of life in patients suffering severe heart failure; however, BiVAD implantation does carry a greater risk of morbidity and mortality compared to that of an LVAD.

Presentation of the case

a suitable transplant candidate; this is known as Destination

This is a case study of a patient who was cared for in the

Therapy. Destination Therapy can only be done at present

Cardiac and Thoracic Centre at The Alfred Hospital over a

in Australia as a part of a clinical trial. The waiting time

nine-month period. The patient was a 16-year-old girl who

for cardiac transplantation varies due to many contributing

was transferred from a regional Hospital in Victoria with

factors, with the current average expected waiting time in our

the diagnosis of post-partum dilated cardiomyopathy. Upon

organisation being 204 days. At the present time, The Alfred

presentation, four weeks post-partum her symptoms included:

Hospital is supporting 17 patients living in the community

chest pain, abdominal pain, shortness of breath, lethargy

with VADs. Of these 17 patients, three have biventricular

and fluid retention. An urgent echocardiogram reflected an

assist devices (BiVADs) in situ; the remainder have left

ejection fraction of approximately 9%, subsequently, leading

ventricular assist devices (LVADs).

to the diagnosis of post-partum cardiomyopathy.

An LVAD is a mechanical pump that is implanted into the

Initiation and optimisation of heart failure medical therapy

apex of the left ventricle1. The device is commonly used

was the initial treatment goal, with the aim to improve

for patients with either left ventricular or biventricular

and restore heart function. However, when the patient

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TRANSPLANT JOURNAL OF AUSTRALASIA

re-presented shortly after discharge from hospital due to her

After three months of sedation and intubation the patient

worsening symptoms, she had rapidly progressed to New

woke to not only two mechanical devices attached to her,

York Heart Association (NYHA) Grade III heart failure. The

but also to a beautiful, yet unfamiliar daughter who was now

NYHA heart failure classification is a fundamental tool used

five months old. Her partner kept a bedside vigil, throughout

by physicians to assess the functional stage of heart failure in

this very difficult and frightening time, unaware if she was

an individual by relating symptoms to everyday activities and

to ever wake up. Pronounced physical and psychological

quality of life2. As the patient’s heart failure had advanced, an

deterioration was evident upon transfer of the patient from

automatic internal cardiac defibrillator (AICD) was implanted

ICU to the cardiac unit. Severe myopathy as a result of

to prevent fatal cardiac arrhythmias, which she was now at

her prolonged ICU stay, and the effects of waking up in an

great risk of. Shortly after implantation, as the device was

unacquainted environment to strangers, had taken its toll.

checked, the patient suffered a cardiac arrest and required cardiopulmonary resuscitation. This was only the beginning of her long journey and clinical deterioration, which saw her spend approximately three months in the intensive care unit (ICU) intubated with numerous pharmacological and mechanical supports keeping her alive.

For the next eight months, whilst an inpatient on the cardiac unit, she was faced with many hurdles challenging both her physical and mental capabilities. Several episodes of multi-organ dysfunction syndrome (MODS), renal failure, sepsis, coagulopathy, a transient ischaemic attack, and pump thrombus requiring thrombolysis, was much of what

The patient’s condition continued to deteriorate despite

she endured precipitating multiple readmissions to ICU.

inotropes on the cardiac unit. She was emergently taken for

Throughout this time her partner and baby visited daily with

LVAD insertion. Due to the speed and severity of her clinical

The Alfred Hospital soon becoming their home away from

deterioration, not only was the heart’s left side affected, but

home.

also her right heart. She required the insertion of a temporary right ventricular assist device (RVAD). This biventricular failure was an ongoing problem. The patient did not tolerate weaning of the RVAD despite optimal medical management. The decision was made to insert a continuous-flow RVAD in order to support her ongoing poor right-sided heart function. Throughout the six-week period post-LVAD implantation the patient required nine sternotomies in total; the original

Understandably,

throughout

this

period

ongoing

complications, her psychological wellbeing suffered. She displayed behaviours such as: disengagement with nursing staff and her family, lack of interaction with her baby, and an unwillingness to get out of bed every day. These behaviours signalled signs of depression, reflecting the immense toll she had suffered as a result of her ill health.

LVAD was explanted and a different device implanted due to

With the many complications she had already faced she was

suboptimal blood flow into the inflow cannula thought due

deemed a high surgical risk; however, the unit had decided

to the patient’s small chest cavity, tamponade, and several

that transplantation was her only option for survival into

returns to theatre to manage her right heart function.

the near future. With the odds stacked heavily against her,

NYHA Heart Failure Classification

NYHA class

Symptoms

Dickstein K et al. Eur Heart J 2008; 29:2388–2442.

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TRANSPLANT JOURNAL OF AUSTRALASIA

the patient received a heart transplant in February 2012.

support network whilst she remained an inpatient on the

The surgery was not without complication. A high dose

unit. The complexity of her disease and the speed with which

of inotropic support was required and numerous blood

she often deteriorated was challenging for all. It was often

transfusions were given to correct ongoing haemorrhage,

the same senior nurses looking after the family unit. This

both intraoperatively and postoperatively.

continuity of care enabled a relationship to form between the

The road to recovery was stunted by the effects of her depression, which had a profound effect on her physical

family and that group of nursing staff, thus nurturing trust, respect, honesty, friendship, laughter and education.

rehabilitation. Refusing to attend inpatient rehabilitation at

To help minimise the emotional impact on the patient

The Alfred’s affiliated rehabilitation centre, the patient made

and family unit, a person-centred nursing care plan was

a compromise with the medical team that upon discharge

established to assist nurses in addressing her unique social

home from hospital she would attend the standard post-

and clinical situation. We aimed to improve the mother–

transplant physiotherapy classes at The Alfred Hospital three

baby bond, which had been lost as a result of her prolonged

times per week. This was agreed upon, and the patient was discharged home. However, weeks later she represented with signs of sepsis and was found to have developed a Stage II pressure ulcer on her sacrum, which highlighted that she was not managing in her home environment.

period of intubation. This was achieved by encouraging her to participate in the care of her baby for feeding, nursing, bathing and playing. Furthermore, we were able to ‘mind’ the baby to enable the relationship between the couple to rejuvinate. We were able to cluster nursing tasks so as

This admission was to be the end of her journey. Her sepsis

to allow for rest periods for the patient, and facilitate time

rapidly developed into MODS and then, disseminated

alone for the family unit to foster growth. Extreme myopathy

intravascular coagulopathy (DIC). The patient was transferred

was one of the patient’s main physical issues; therefore,

to ICU where extracorporeal membrane oxygenation (ECMO)

physiotherapy was the priority for the patient and nursing

and haemofiltration was commenced; however, after a family

staff. Nursing staff liaised with physiotherapy daily to enable

meeting in the days that followed the decision was made to

uninterrupted time to assist with rehabilitation.

withdraw medical treatment. She passed away soon after withdrawal, with her partner and baby by her side.

Nursing outcomes/implications This patient’s journey was unique, and there were many distinguishing factors that made this patient’s story much more challenging than most. Caring for a minor in an adult hospital is difficult enough, but in this situation, medical and nursing staff were also required to care for a baby and a new mother’s needs in an acute cardiac setting (midwifery

As the patient’s condition improved, she became strong enough to sit in a wheelchair and support the five-month-old baby on her lap. Day leave with the BiVADs was encouraged. Initially, the patient would leave with the supervision of nursing staff and, later, with her partner who was her primary carer and VAD-competent. Activities, such as a BBQ in the park and a visit from Santa and Mrs Claus at Christmas time was organised to break up the monotony of the ward environment. As the patient’s physical strength improved,

services aren’t readily available within the facility). In

the family unit set out on an almost daily basis to explore the

addition, this patient was our hospital’s first – implanted

sights that Melbourne had to offer.

with continuous-flow BiVADs.

Great apprehension was felt throughout the unit in relation to

The patient’s age and social situation presented many hurdles

caring for the first patient implanted with a continuous-flow

both emotionally and physically for not only the patient, but

BiVAD. At this time our organisation was also introducing

also for the nursing staff caring for her. Her minor status,

another type of VAD into the hospital; therefore, we had

lack of social support from extended family and friends, the

many learning needs in relation to these two devices. The

presence of a five-month-old baby, and a supportive, yet

continuous-flow BiVAD had differing parameters (varying

equally overwhelmed 21-year-old partner made the delivery

from right to left VAD) to that of an LVAD alone. The acuity

of care challenging, yet rewarding at the same time. Due to

and complexity of the patient’s medical condition also

their lack of maturity and geographical isolation from their

contributed to the feeling of apprehension; however, as a

family and friends, a core group of nurses became their

team we soon adapted.

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Initial presentationT R A N S P L A N T

JOURNAL OF AUSTRALASIA

Initial presentation Initial presentation Once the patient was transferred from ICU to the unit, bedside education sessions took place to support nursing staff in the care and understanding of the BiVAD. Bedside handovers

ensured the patient was assessed and VAD parameters were checked by two nurses together, ensuring continuity in understanding and documenting device function. The ICU team reviewed the patient daily for a period of time as follow-up — further supporting the nursing and medical staff in care of the devices. Initially, the haemodialysis the patient required was facilitated on the cardiac unit to ensure patient safety in the presence of medical and nursing support. However, as the patient’s condition improved she was able to be transferred to the dialysis unit for treatment accompanied by a nurse from the cardiac unit to assist with monitoring the BiVAD. Throughout her stay there were many times we held grave fears for her deteriorating condition, often leaving work questioning “would she last the night?” However, time and time again she managed to make it through, despite the odds being heavily stacked against her. The patient had

Post manyBiVAD “miracles”insertion throughout her stay; however, the greatest is thought to have been the first successful continuous flow BiVAD implantation as a bridge to transplantation undertaken at The Alfred Hospital. There were many occasions where transplantation seemed a distant goal. However, when the call came through, again, great apprehension was felt in regard to the outcomes of the surgery. The hurdles that were faced post-transplantation proved more psychological, as she suffered from a lack of motivation and worsening situational depression. On many occasions it was feared she had “given up”. To help her Volume 22 Number 2 – July 2013

Post-BiVAD insertion

Post BiVAD insertion address her psychological battles, intense physiotherapy was undertaken on the cardiac unit to support discharge and avoid inpatient rehabilitation, something that we knew the patient was resistant/reluctant to undergo. Music therapy was reinstated whilst recovering from her BiVAD implantation, to provide relief from the psychological burden, which had taken hold. The social work department offered invaluable support to the patient and family. Laughter and humour were often distant memories for the small family unit, which highlighted the importance of the core group of nursing staff and the relationship they shared with this unique family. Reflection After such an emotional and unique patient journey the effects were felt throughout the hospital, as many units had assisted in her care. Upon reflection, we were able to ask ourselves many questions: • Was the patient–nurse relationship maintained? Were relationship boundaries blurred due to the patient’s lack of social supports and social activity? Did we give more of ourselves personally to help engage her? Due to her length of stay, age, and again, lack of family support, it had been difficult not to develop a relationship and a personal bond with her and her partner. • Were we too lenient? At times yes, however, it was also necessary, as we were more than just her nurses. 27

TRANSPLANT JOURNAL OF AUSTRALASIA

ARTICLE Additionally, when things needed to happen or issues

far between. However, with the hospital’s newly assigned

needed to be addressed we felt like she listened and was

paediatric lung transplant service, we hope that this statewide

more compliant when it was someone she knew and

gap in rehabilitation care will be addressed in the near future.

trusted asking things of her.

This will allow us to provide young patients with a suitable

• Should the option of palliation/transition care have been raised earlier? This was raised by the social worker with the patient and her partner; however, due to her age, social situation and acute deterioration, and the circumstances in which withdrawal from treatment would take place, palliation was not a consideration. This was, in part, due to our close bond and emotional attachment with the patient and her family and our lack of willingness

environment, conducive to their recovery needs.

Conclusion It is important to highlight the many challenges we overcame throughout the patient’s journey to transplantation. As mentioned previously, staff were amazed to see, time and time again, she did not give up the battle. Our person-centred approach and continuity in care made this a rewarding yet

to “give-up” when she had overcome so much and had so

challenging experience, which we have learned much from.

much to fight for.

Our role as patient advocates ensured she had a voice, giving

• Was she discharged too early? This was a question raised

her an element of control and direction in the medical and

in the debrief session that was held after her passing. It

nursing care she was to receive. Consistent nursing care which

was felt by those heavily involved with her care that it

upheld The Alfred Health values of integrity, accountability,

was difficult to deny the family their one wish of living

collaboration and knowledge reflected the high standard

at home together, being an independent family unit for

and quality of care provided by the organisation and, in

the first time. Services were put in place to help bridge

particular, the nursing staff. Despite the end outcome, we

the transition from hospital to the home environment;

have to focus on the positives. As a result of all our hard work

however, this proved unsuccessful/inadequate.

and dedication, she was able to see her daughter turn one,

• Did we maintain a person-centred approach? This is a resounding yes. After the initial excitement of having

and live at home as a family unit. We were able to give her some quality of life during this gruelling battle.

a baby on our unit, we quickly adapted our practice

Although transplantation is by no means “a ticket home” for

to ensure the needs of the patient were met first and

many of these complex heart failure patients, in this case, at

foremost, and the needs of the family unit were always

times when it felt all too hard, it did give hope to not only the

considered.

patient, but also her partner and family unit, and the nursing

Recommendations

staff involved in her care. This was an extremely rewarding patient journey to have been a part of, and a pivotal chapter

In hindsight, a maternal health nurse could have been a

in The Alfred Hospital’s involvement with BiVADs as a bridge

valuable resource to support the patient with re-establishing

to cardiac transplantation.

and maintaining a bond with her baby, after the many months lost due to a prolonged hospital stay. As The Alfred Hospital does not specialise in paediatric and maternity services, this was not something that was often at the forefront of our minds whilst caring for her. As the patient’s mental health and wellbeing had an immense

We would like to thank our colleagues at The Alfred Hospital for both their personal and professional involvement in the care of this patient. The collaborative dedication and teamwork helped make this a rewarding journey that is often reflected upon.

impact on her recovery, it is thought that a greater involvement

References

from psychology services in her post-transplantation care

1. Kirklin JK, Naftel DC, Kormos RL, Stevenson LW, Pagani

could have been encouraged. At this time, when her decline

FD, Miller MA, Ulisney KL, Baldwin JT & Young JB.

in mental state was most vulnerable, these services could

Second INTERMACS annual report: more than 1,000

have supported her in the vital stages of rehabilitation and

primary left ventricular assist device implants. J Heart

recovery. Since this patient journey, there is now a dedicated

Lung Transplant 2010; 29:1–10.

psychologist attached to the cardiology team at Alfred Health.

2. Heart Failure Society of America. NYHA Classification

Access to appropriate rehabilitation has long been a barrier

— The Stages of Heart Failure (Internet); 2002 (updated

to caring for minors, as the options in facilities, dedicated

2011 Jun 12; cited 2013 May 12). Available from: http://

to the recovery of adolescents and teenagers are few and

www.abouthf.org/questions_stages.htm

Volume 22 Number 2 – July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

DonateLife Thanksgiving and Remembrance Services As the city bustled with activities, there were peaceful and poignant events taking place behind closed doors, in open parks and in sacred spaces in all of those cities around the nation. The annual celebration of Thanksgiving and Remembrance services were held in recognition of all those who have been part of the donation and transplant journey. Transplant recipients, health professionals, and donor families gathered. Stories were told, poems recited and choirs sang as we remembered the people who became organ or tissue donors, as we tried to thank their generous family members and, as we reflected on the tough journey of transplantation through the eyes of recipients.

Volume 23 Number 2 â&#x20AC;&#x201C; July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

ATCAATCA News News ReportReport for TJA for TJA

Australasian Transplant Coordinators’ Association (ATCA)

This year ThisAustralia year Australia has thehas honor the honor of hosting of hosting the International the International Society Society of Organ of Organ Donation Donation and and Procurement Procurement (ISODP) (ISODP) meeting meeting in Sydney in Sydney November November 21-24 21-24 2013. 2013. For more For information more information •message ATCA President pleaseplease go to www.isodp2013.org. go to www.isodp2013.org. The Paul welcome TheRobertson welcome message below below is taken is from takenthe from website. the website.

Welcome Welcome Message Message

This year Australia has the honour of hosting the International Society of Organ Donation and Procurement (ISODP) meeting in Sydney, 21–24 November 2013. For more information please go to www.isodp2013.org. The welcome message below is taken from the website. Dear colleagues, Dear colleagues,

Welcome message

The Australian The Australian DonateLife DonateLife NetworkNetwork and The and Transplantation The Transplantation Society of Society Australia of Australia and Newand Zealand New Zealand are looking are forward looking forward to to Dear colleagues, hosting everyone hosting everyone in Sydney in for Sydney the 12th for the Congress 12th Congress of the International of the International Society of Society OrganofDonation Organ Donation and Procurement. and Procurement.

The Australian DonateLife Network and The Transplantation Society of Australia and New Zealand are looking forward to hosting everyone in Sydney forand theeducational 12th Congress of the International Society of Organ anddonation Procurement. We are planning We are planning scientific scientific and educational programs programs to present to the present issues, theideas issues, andideas innovations and innovations in Donation organin donation organ and and procurement procurement in meaningful, in meaningful, detailed detailed and accessible and accessible ways, toways, stimulate to stimulate debate and debate discussion and discussion and to hear andthe to hear best the ideas best from ideas from We are planning scientific and educational programmes to present the issues, ideas and innovations in organ donation and across the across world. the you are If involved you are involved in organ in donation organ donation this is the this one is meeting the one meeting youdebate cantyou afford cantto afford miss! to miss! procurement inIfworld. meaningful, detailed and accessible ways, to stimulate and discussion and to hear the best ideas from across the world. If you are involved in organ donation, this is the one meeting you can’t afford to miss! And of course And ofwe course are proud we aretoproud have our to have beautiful our beautiful city and city countryside and countryside as the backdrop. as the backdrop. We hopeWe thathope you that willyou takewill the take time the time And of course we are proud to have our beautiful city and countryside as the backdrop. We hope that you will take the time to to discover to discover or enjoyor again enjoy theagain hospitality the hospitality and myraid and attractions myraid attractions offered. offered. We hopeWe youhope willyou discover will discover why we why chosewe tochose live to live discover or enjoy again the hospitality and myriad attractions offered. We hope you will discover why we choose to live here in here in Australia hereand in Australia and especially andinespecially in Sydney in which Sydney you which willyou findwill is findofof isthe one of the friendly most friendly andand popular and places popular inplaces the in world. inthe theworld. world. Australia especially Sydney, which you will find is one one themost most friendly popular places

Welook look forward to welcoming to Sydney late — November. We We forward look forward to welcoming to welcoming you you to Sydney you to in Sydney latein spring in late-spring spring November. - November.

Jeremy Jeremy R. Chapman R. Chapman

Yael Cass Yael Cass

Peter Macdonald Peter Macdonald

Congress Congress Chair Congress Chair Chair

Donatelife Donatelife Chief Executive Chief Officer Officer DonateLife ChiefExecutive Executive Officer

PresidentPresident of TSANZ ofofTSANZ President TSANZ

Jeremy R Chapman

Yael Cass

of the Organ and Tissue Authority

Peter Macdonald

of the Organ of theand Organ Tissue andAuthority Tissue Authority

There are some important dates to consider, most importantly abstract submission closes on 22 July. It would be great to see a large number of submitted presentation to give this meeting a true Australian flavour.closes closes There There are some areabstracts important some important dates for to dates consider, to consider, most importantly most importantly abstract abstract submission submission on on

nd nd July 22July . it22 would . it would be great beto great see to a large see anumber large number of abstracts of abstracts submitted submitted for presentation for presentation to to The ATCA AGM and annual conference has had to be postponed until November this year due to initial low registration numbers. give give meeting this meeting a true aAustralian true Australian flavor. Therethis are a number of reasons for the lowflavor. numbers, but in part due to competing education opportunities. In retrospect it would

have been wise to consider the impact that the ISODP meeting would have had on our regular meeting.

The ATCA The ATCA AGM AGM and annual and annual conference conference has had has tohad be postponed to be postponed until November until November this year this year For this reason, we have decided to fold the usual education part of our meeting into the ISODP meeting in Sydney and hope due todue initial to initial low registration low registration numbers. numbers. There There are a number are a number of reasons of reasons for thefor lowthenumbers, low numbers, thatin with a in large turnout of competing ATCA education members, we couldopportunities. contribute thisInopportunity inita would positive way. wise but but part due part todue competing to education opportunities. Intoretrospect retrospect it would have been have beentowise to consider consider the impact the impact that thethat ISODP the ISODP meeting meeting wouldwould have had have onhad ouron regular our regular meeting. meeting. We will need to take this opportunity of having the membership together to undertake to hold the AGM during the November meeting. Once again I apologise for any inconvenience and confusion caused by postponing the meeting.

For this For reason, this reason, we have wedecided have decided to foldtothe fold usual the education usual education part ofpart our of meeting our meeting into the into the ISODPISODP meeting meeting in Sydney in Sydney and hope andthat hopewith thatawith largeaturnout large turnout of ATCA of ATCA members members that wethat we could contribute could contribute to thisto opportunity this opportunity in a positive in a positive way. way.

Volume 22 Number 2 – July 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

DIARY DATES 2013–2014 For more information, check out the links on the TNA website http://www.tna.asn.au 2013

2014 9–12 April 2014

21–23 September 2013

ISHLT — The International Society for Heart & Lung

ITNS 22nd Annual Symposium

Transplantation

Washington DC, USA

34th Annual Meeting and Scientific Sessions

Website: www.itns.org

Manchester Grand San Diego, CA, USA

24–27 September 2013 14th World Congress of the International Pancreas and Islet Transplant Association (IPITA 2013)

26–31 July 2014 World Transplant Congress

Monterey, CA, USA

San Francisco, CA, USA

23–25 October 2013 Transplant Nurses’ Association National Conference Complexities of Transplantation: Building Knowledge & expertise Dockside Venue — Darling Harbour, NSW, Australia

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

Volume 22 Number 2 – July 2013

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

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

Fees:

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

Name: Address: Suburb: State: Country: Post/zip code: Tel: (work) (home) Fax: Email: Hospital: Special interests: Position held: Nurse? Yes/No

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