Tja march 2013 lr by WorldWeb Group

Transplant Journal of Australasia Volume 22 No 1 March 2013

Novel education practices in transplantation and donation 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 â&#x20AC;&#x2122; A s s o c i a t i o n I n c .

✓

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

CO NTE NTS Journal of the Transplant Nurses’ Association Inc.

TNA National Executive report

Editorial 3

National Executive President Claire West Tel (02) 9515 7274 Fax (02) 9515 3606 Email president@tna.asn.au

Guest editorial Nursing in the 21st century – how have we changed?

Secretary Libby John Tel (08) 8204 5819 Fax (08) 8204 6959 Email secretary@tna.asn.au

Articles

Secretariat Nicole Williams Tel (08) 8204 5819 Fax (08) 8204 6959 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: Nicole Williams, TNA Secretariat

Published by Cambridge Publishing – a division of Cambridge Media

Susan Chernenko

Something to tweet about: 10 incorporating social media into your nursing practice Claire West & Deborah Verran

Transplant Procurement Management – 13 Donation and Transplantation Institute (TPM – DTI): a new formula to success in organ donation Martí Manyalich

TNA Patient Education Project (PEP) – needs analysis survey results

Libby John

Organ donation declared the winner in Donatelife Week 2013

David Cornford

Rocky Mountain High, Colorado

Janine Sawyer

10 Walters Drive Osborne Park, WA 6017 Tel (08) 6314 5222 Fax (08) 6314 5299 Web www.cambridgemedia.com.au

ATCA report

Diary dates

Copy Editor Rachel Hoare

State Executive

Graphic Designer Gordon McDade

Editorial Board

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, Jannsen Cilag and Roche Products Pty Ltd, all of which support the TNA and its activities.

Transplant Nurses’ Association website:

www.tna.asn.au

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

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

TNA N a t i o n a l E x e c u t i v e R e p o r t survey is included in this edition and we look

Welcome to the first edition of TJA for 2013. I hope that everyone has had a very merry Christmas and a safe and happy new year. I hope that there was some down time for you all, although I have heard that most units have hit the ground running early this year! It is good to see the increase in organ donation and transplantation.

forward to further reports on the group’s progress soon. I would like to thank Nicole Williams, our outgoing Secretariat, for all her hard work for the last 10 years. Nicole has resigned from her

position after many years of assistance to the The Victorian/Tasmanian TNA branch hopes that National Executive. Thanks Nicole, we will miss you enjoyed the 2012 TNA Conference late last you on the teleconferences. The TNA National year in Melbourne. There was an unbelievable Julie Pavlovic Executive is about to appoint a new Secretariat number of abstracts submitted for the conference following a successful call for expressions of – many of them first-time presenters – which interest for this position. We look forward to introducing our was great to see. It generated many hours of debate for the new Secretariat to you shortly. conference abstract committee. TNA now has a Facebook page! Search for us, Transplant Nurses’ Association and hit the like button. Yes, we old fossils are getting into technology – albeit slowly. Please remember to also look us up on the website www.tna.asn.au. The Patient Education Project (PEP) Working Party is under way. Thank you to all those who submitted expressions of interest. A report on the recent member patient education

A reminder to all members that the 2013 TNA conference will be held in Sydney on 24 and 25 October this year. We hope to see as many of you there as possible. Remember that if you have been a TNA member for more than one year and have not received a scholarship in the previous two years, you can apply for a scholarship to help (financially) attend conferences – see the TNA website for closing dates and all the necessary application forms.

The Transplant Nurses’ Association is now on

‘Like’ us

Facebook. on Facebook

for all the updates on the national conference, educational activities and transplant-related issues.

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

EDITORIAL Welcome to the first edition of the Transplant

If you attended the (not so recent) TNA annual

Journal of Australasia (TJA) for 2013. We are well

national conference in Melbourne, you would have

into the year now, so the festive season seems

had the pleasure of recounting the early history

like a distant memory. I hope you enjoyed the

and evolution of the nursing discipline presented

celebrations of the season and have returned to

by Susan Chernenko. Susan has kindly provided

work with renewed energy and motivation.

our guest editorial for this edition, highlighting the

In light of this fresh enthusiasm, I have collected

fundamental elements of her keynote address.

a variety of articles and reports on the topic

As well as maintaining our own professional

of education: patient education requirements,

knowledge, a major aspect of our role as transplant

professional education and the dissemination of information.

Tracey Mackay

Education in its general term refers to a form

coordinators and transplant nurses is to educate patients and their families/carers, pre- and posttransplant – empowering them with our knowledge

of learning, in which knowledge, skills and habits are

to improve and maintain their health and optimise graft

transferred, either person to person, person to group or

function. Donation specialists also utilise their knowledge

from one generation to the next, through teaching, training,

and skill to guide and support families and staff through the

research or self-directed learning. Generally, it occurs through

complex donation process.

any experience that has a formative effect on the way we think, feel or act.

In this edition of the TJA, Libby John has collated the Patient

Obviously, ongoing education for nurses and health

by TNA members have informed the direction of the PEP

professionals is an essential part of our national registration, allowing us to continue to practise. The Transplant Nurses’

Education Program (PEP) study survey. The answers given working party.

Association (TNA) provides many opportunities for our

The way in which we learn in the 21st century is very different.

members to participate in further education in this specialty

Knowledge is at our fingertips. The World Wide Web (www)

area: in our state branch education sessions, at the annual

can connect people instantly – the latest research outcomes,

national conference, in the provision of scholarships to

practice guidelines or professional articles from sources all

attend associated conferences or courses and, of course, the

over the world can be accessed by anyone, anytime.

publication and distribution of the TJA. I had the pleasure of listening to a few presentations given by Dr Manyalich during the Donatelife National Forum, Brisbane 2012. In his article, “Transplant Procurement Management – Donation and Transplantation Institute (TPM – DTI): a new formula to success in organ donation”, Dr Manyalich identifies education and training of transplant professionals as the key factor that has increased organ donation in Spain. He is the co-founder and medical director

Claire West has provided an article exploring the emergence and utilisation of social network sites for education and dissemination of knowledge. These networks are emerging as portals of information – education can be delivered from professional to professional or they can be developed into tools to be used to educate our patients. Thanks to Claire, TNA is now on Facebook!! See the article and advertisement in this journal for details.

of the TPM – DTI, Barcelona, Spain. He speaks mainly of the

Part of education is promotion – promotion of what you

development and implementation of a professional training

want the patient, family and community to know about.

package – initially in Spain, then distributed throughout

Donatelife Week was held from 24 February to 3 March,

Europe. He shows statistical data explaining the impact that

with events and activities throughout Australia to promote

this education has had – a steady increase in organ donation.

organ and tissue donation. Thousands and thousands of

With the assistance of the Jane Bell Scholarship (awarded by the Royal Melbourne Hospital Graduate Nurses’ Association) I will be travelling to Barcelona to undertake this advanced, international training course in November, 2013. On the subject of scholarships, Janine Sawyer was awarded a

Australian Organ Donor Registry forms were given out to the community! Due to time constraints, I have collated a few photos from the events and activities held in Victoria. It was a very busy time for the donation sector – a job well done. Donor registrations will continue to increase.

TNA scholarship to attend the 34th Annual Aspen Conference

Nelson Mandela once stated that: “No country can really

in Colorado. Her report outlines the educational benefit

develop unless their citizens are educated”. Like a country, our

of attending specialist conferences as well as providing a

professional practice cannot develop unless we continue to

wonderful account of the extracurricular activities!

educate ourselves and our patients.

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

G UEST EDITORIAL

Nursing in the 21st century – how have we changed? Susan Chernenko • Nurse Practitioner, Toronto Lung Service, Canada

Historical events influence and

were destroyed through the Protestant revolt4. Without

shape society, individuals and

monasteries and the hospitals housed within their doors, the

professions.

evolution

public lost any organised system of relief for the ill, poor or in

of nursing is closely linked to

need. Quickly recognising the threat to medical advancement,

historical influences throughout

the field of medicine withdrew from monasteries and

The

millennia and understanding the

found a new home in the university. Nursing, not valued

history of nursing allows nurses to appreciate the challenges

as an intellectual endeavour, lost its support and social

we face today. The profession of nursing has transformed its

status. The field of nursing remained within the domain

practice, roles and caregiving models. However, it remains

of monasteries, under the control of brothers and nuns4.

embedded in the premise of caring and service to those in

The Protestants’ view of a woman’s place was in the home,

need.

caring for the family. Nursing, not considered a respectable

The word nursing is derived from Latin nutrire “to nourish”, often referring to a wet nurse; a woman who breastfed the babies of others1. The earliest nurses were often nuns or other women who helped care for the ill, destitute or homeless people with no family support. Women were believed to be nurturers with an instinctive desire to care for others. In the medieval period (5th to 15th centuries) nursing was untaught, instinctive and based on experience and observation. Caring for others was performed out of compassion. The art of

profession by Protestants, was relegated to women who were immoral, drunken, illiterate and often prostitutes. Due to the destruction of monasteries and a subsequent loss of a place for the ill, hospitals were quickly built. Unfortunately they became places of horror due to unsanitary conditions causing epidemics. Nursing was relegated to the domestic services of house cleaning, bleeding and purging. These dark ages of nursing during the Renaissance (1500–1850 AD) lasted until the 19th century.

nursing was passed through generations from observation

During the 19th century, various British social reformers

of others (typically their mothers) caring for the sick and

advocated for religious women (nuns) to staff the existing

frequently through trial and error. The ideals of service

hospitals. Physicians and surgeons criticised these religious

to others and self-sacrifice were in keeping with the early

nurses as they believed they were more interested in the

Christian church’s philosophy2. Medicine was relegated

patients’ spiritual needs than their physical ones. Physicians

to medicine men, shamans or witch doctors. Healing was

desired nurses be answerable to them and favoured a

believed to occur through white magic, hypnosis, charms

more structured model; one structured on the middle-

and purgation. Ill health was believed to be due to evil spirits

class Victorian family3. This hierarchical model has been

invading the victim’s body. It was during this period that

perpetuated in nursing beyond the 19th century.

nursing was well thought of, admired and respected.

In the 19th century, Florence Nightingale, daughter of

The 11th–19th centuries were considered the period of

wealthy British parents, was educated in history, philosophy,

apprentice nursing. Caring for the sick was viewed as

literature, mathematics (statistics), French, German, Italian,

ministry to Christ. Nursing care of the sick was traditionally

Greek and Latin2. Eschewing the traditional female role

performed in monasteries, with instruction imparted by nuns

and finding comfort in her religious beliefs, she viewed her

and priests . No formal education was provided and learning

life as a calling to reduce human suffering. Despite fierce

occurred while ‘on-the-job’. During the Middle Ages, with the

opposition from her parents, who believed caring for the

deterioration of Catholicism by the Protestant Reformation,

sick was improper for a woman of her class, they eventually

nursing underwent an unfortunate and significant setback.

acquiesced to her desire for nursing training. Following

King Henry VIII used the Protestant Reformation to remove

three months of training and observation of nursing care

himself from Papal authority due to the church’s refusal to

and hospital organisation from the deaconesses at Pastor

sanction his divorce. During his reign, over 600 monasteries

Fliedner’s Deaconess Home and Hospital in Germany, she

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

returned to England with an appointment as superintendent

cleaning staff refusing to clean the wards and poor support

of the Upper Harley Street Hospital for the sick and elderly

from the superintendent of the hospital, she persevered3.

women3. In 1854 the Crimean War broke out. Hearing that

Eventually her fight for improved standards for patient

British troops received no nursing care in comparison to

care and environment were recognised and health care in

their French counterparts and suffered a mortality rate of

Australia flourished. She was known as a strong advocate for

41%, she travelled with a group of nurses to care for the

regulated professional nursing practice in Australia7.

sick and wounded. Upon arrival in the Crimea she found the troops dying of disease, not their injuries. With a strong belief in microscopic pathogens as a cause of disease, she and her nurses scoured the soldiers’ barracks and hospital wards, provided basic necessities of bathing, clean dressings, adequate nutrition and psychological care. Her group of nurses dramatically reduced the number of soldiers’ deaths. Using principles of statistics, as taught by her father, she documented the results of nursing care provided, laying the foundation for modern, evidence-based practice2.

Nursing’s role today is vastly more complex than what was initially established. Today’s nurse serves many roles and functions such as leader, specialist, educator, crisis care manager, spiritual provider, informatics specialist, healer, sentry and consultant in health care, insurance and legal industry. Professional nursing opportunities do not lie solely in a hospital setting or rural communities any more. Nurses have the option of working in a variety of environments including hospice or military facilities, retirement homes, pharmaceutical companies, rehabilitation centres, long-term

Upon returning to England, Florence Nightingale received

care facilities and more. Within the hospital environment,

a trust fund from the British people in recognition for the

many specialty areas are available for nurses to challenge

tremendous work accomplished during the Crimean War .

them intellectually, emotionally and spiritually. Although

She opened the Nightingale School of Nursing in London,

nursing qualifications may vary from country to country, the

instituting a different form of professional nursing education.

premise remains that nursing is a regulated profession with

Included in the curriculum was theory, coupled with clinical

established educational standards and curricula.

experience in various specialty areas. Her school formalised nursing education, making the profession of nursing a viable and respectable opportunity for women who desired employment outside the home. This model was then

adopted

worldwide.

Further, believing that care of the sick is most important in the home, she developed a training program for district nursing, thereby improving the health of the poor and indigent5. The history of nursing in Australia has paralleled the history of nursing globally. Nursing was undertaken initially by family members and unskilled women who were often uneducated, dishevelled and intoxicated. Health care overall in Australia was so poor that the Colonial Secretary Henry Parkes requested Florence Nightingale send her best trainees to Australia to establish a nursing training school in Sydney6.

Nursing evolution is often in response to changes in societal health needs. With advancements in science, technology and intellectual curiosity, nursing as a profession has been afforded increased opportunities for expansion. Such expansion includes advanced clinical roles; that which previously lay beyond the traditional boundaries of nursing. These advanced clinical roles include the nurse anaesthetist, nurse midwife, clinical nurse specialist (CNS) and nurse practitioner (NP). Exploring one advanced clinical role for nurses such as the role of NP, or in some countries, acute care nurse practitioner (ACNP), one finds a rich breadth and scope of practice. A practice steeped in history, developed in response to the health care needs in various contexts and visionary nurses persevering in the presence of obstacles, controversy and challenges, the NP role has flourished. To understand the role of the NP, one must view the definition, of which there are many. One definition that best encompasses the general premise is:

Lucy Osburn, one of the five nurses sent, introduced a

A registered nurse who has acquired the expert knowledge

hierarchical system of management where nursing was in

base, complex decision-making skills and clinical

charge of nurses as opposed to the physician group. She

competencies for expanded practice, the characteristics

encountered many challenges in her role as nursing manager

of which are shaped by the context and/or country in

in the hospital. Despite a weather-beaten hospital building in

which s/he is credentialed to practice. A Master’s degree is

a complete state of disrepair, rat-infested, filthy wards, male

recommended for entry level.8

Volume 23 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Historically, the development of the NP role evolved out of

and the public as well as professionally through lectures,

society’s needs for services in rural remote communities;

conferences and rounds. Through clinical research studies,

areas underserviced by the medical community. Today, the

whether nursing or medically based, NPs publish their

role for the NP includes advanced care in specialty areas

research findings locally, nationally and internationally.

in hospitals in order to improve services for patients and families on acute care units.

Historically, nursing has always been inextricably linked to the tradition of caring; a premise society struggles to

Introducing the role of NPs into the health care setting had

acknowledge and value. Through the centuries, the role

many challenges; some of which mimicked the challenges

of nursing has grown – demonstrated by improvements

nursing underwent centuries ago. Despite clinical competence,

in education, increased qualifications and opportunities

high level of skill and fierce determination, political opposition

in various work environments. Nursing continues to face

occurred from physicians who were traditional gatekeepers to

recurrent issues such as maintaining professional standards

health care. There was the perception of boundary extension

of practice, autonomy for nurses and maintenance of control

into medicine’s traditional domain of practice. Challenges

of professional nursing practice. As today’s nurse sees

occurred in the public’s acceptance of new care models. The

more options and opportunities in professional practice,

public was unfamiliar with the role of the NP and believed

we must continue to remain current in advances in nursing

a diagnosis and treatment must be delivered by a physician.

and medical science, changing technology, and changes in

These and other challenges have been overcome by the

societal and health care delivery systems. By understanding

physician’s and public’s understanding of the role of NPs,

our historical journey, we may traverse today’s challenges

government economic funding for the role, and health care

with insight, clarity, strength and pride.

facilities’ desire to reduce hospital lengths of stay. The roles of NPs have demonstrated increased and improved evidencebased practice, thereby creating a foundation for safe practice, increased patient satisfaction, improved continuity of patient care, improved resource utilisation and economic savings in health care. With physician shortages to patients and the community, the public’s acceptance of new care models, an increased level of expertise from various health care providers and health care facilities’ desire to reduce lengths of stay, the role of the NP was embraced.

… Drawn from the nameless and numberless army of poverty, the nurse worked as a menial and obeyed as a servant. Denied the dignity of a trade, devoid of professional ethics, she could not rise above the degradation of her environment. It never occurred to the Aristotles of the past that it would be safer for the public welfare if nurses were educated instead of lawyers. The untrained nurse is as old as the human race; the trained nurse is a recent discovery. The distinction between the two is a sharp commentary on the follies and prejudices of mankind …1

The role of today’s NP shares the same domains of practice

Victor Robinson

as developed by Florence Nightingale. Following in the footsteps of our predecessor, today’s NP carries a strong and

References

full-bodied clinical practice, performing histories, physical

1. Donahue MP. Nursing: The Finest Art – An Illustrated History, 2nd Edn. Mosby, 1996. http://www.nursingpower.net/nursing/ origen.html

examinations, developing differential diagnoses, ordering and interpreting interventions, performing diagnostic procedures, and working in inpatient and outpatient settings. He/she consults with colleagues in nursing, medicine and other disciplines. The NP provides education to patients, family

2. Egenes KJ. History of Nursing. Jones and Bartlett Publishers, LLC. www.jblearning.com/samples/0763752258/52258_ch01_ roux.pdf 3. Selanders L. Florence Nightingale. Encyclopedia Britannica. http://www.britannica.com/EBchecked/topic/415020/FlorenceNightingale 4. Sundstrom A & H. 1998. From the Decline/Dark Ages to Rebirth/Renaissance of Nursing. http://www.angelfire.com/fl/ EeirensFaerieTales/NursingDeclineHistory.html 5. Hutchison M. Nursing: Yesterday and Today. October 1998. http://members.tripod.com/Marg_Hutchison/nurse-3.html 6. Godden J. Nursing. 2008 http://dictionaryofsydney.org/entry/ nursing 7. NSW Government State Records. Archives In Brief 118 – Nurses http://www.records.nsw.gov.au/state-archives/guidesand-finding-aids/archives-in-brief/archives-in-brief-118 8. International Council of Nurses Fact Sheet. 2008. http://www. icn.ch/images/stories/documents/publications/fact_sheets/1b_ FS-NP_APN.pdf

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

ATCA Conference 2013 PROUDLY ORGANISED & HOSTED BY NSW/ACT COMMITTEE

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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. 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. Dosage: Recommended general daily dose is 1.5 mg administered twice daily (0.75 mg bid). 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: • 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 coadministering 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. 23/11/11 PBS dispensed price (Section 85): $282.89 for 60 x 0.25mg, $543.93 for 60 x 0.5mg, $1,578.72 for 120 x 0.75mg, and $2,068.86 for 120 x 1mg tablets. Repeats: 3.

See approved Product Information before prescribing. Approved Product Information available on request. Please note change(s) in Product Information in italics. myfortic® (mycophenolic acid) Indication: Prophylaxis of acute transplant rejection in adult patients receiving allogeneic renal transplants. Dosage and administration: 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. See full PI before prescribing. Contraindications: Pregnancy, patients with a hypersensitivity to mycophenolate sodium, mycophenolic acid or mycophenolate mofetil or to any of excipients of formulation. Precautions: 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. Administer with caution in patients with active serious digestive system disease. Avoid in patients with rare hereditary deficiency of hypoxanthine-guanine phosphoribosyl-transferase (HGPRT). Increased risk of congenital malformations if used in pregnancy. 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. Myfortic should not be started in women of child bearing age until a negative pregnancy test has been obtained. Highly effective contraception must be used in these women before beginning Myfortic, during therapy and for 6 weeks after their last dose. Not recommended for use in pregnancy. Should not be used by breastfeeding mothers. Interactions: Live attenuated vaccines, tacrolimus, oral contraceptives, 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 have been reported. Other adverse effects - see full Product Information dated. 31/08/11. PBS Dispensed Price: Section 85: $225.18 for 120 x 180 mg, $425.93 for 120 x 360 mg Section 100 Private: $394.80 for 240 x 180 mg, $783.16 for 240 x 360 mg Section 100 Public: $373.44 for 240 x 180 mg, $746.86 for 240 x 360 mg. 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. MYF0029

Novartis is very proud to support the Transplant Nurses Association

TRANSPLANT JOURNAL OF AUSTRALASIA

ARTICLE

Something to tweet about: incorporating social media into your nursing practice Claire West • RN, MN, Liver Transplant Coordinator, Royal Prince Alfred Hospital, NSW Deborah Verran • MBChB, FRACS – Transplant Surgeon, Royal Prince Alfred Hospital, NSW

Abstract The use of social media has become a conduit for relaying information rapidly around the world and is increasingly being used not only by individuals but a number of organisations. There is a broad range of social media platforms available to transplant nurses including Facebook, Twitter, LinkedIn and blogs, to name a few. Numerous nursing and transplant-related organisations have established a presence on social media including associations, institutions and journals. Through the use of social media, transplant nurses are able to both increase their knowledge base and network with colleagues and organisations internationally.

Introduction

Social networks – Facebook, LinkedIn, MySpace

Social media is defined as “the constellation of internetbased tools that help a user to connect, collaborate and communicate with others in real time”1. Some of you may be thinking that you do not need to use social media because

Share – YouTube, flickr Publish – Wikipedia Microblog – twitter Discuss – Skype

the information shared is trivial, but this is about much more

The top social media platforms used in health care are

than sharing social stories. Use of social media is becoming

predominantly Facebook, Twitter, YouTube and LinkedIn.

more prevalent and is now considered the primary method

Australian hospitals’ use of social media is thought to be 12

of communication for the younger age group2. Imagine not

to 18 months behind the USA4. The comparisons between

learning how to use email when it was introduced? You

the two countries can be seen in Table 1.

would now be a long way behind your colleagues and would have found it increasingly difficult to communicate with colleagues and share information.

All age groups in Australia are now users of social media. The largest age group using Facebook are the 25–34 years, followed by the 18–24 years and the 35–44 years5. Not surprisingly, the younger generations have been the first

What is social media?

to join many social media platforms, but it is now evident

There are over 100 different social media platforms that can

that social media usage is also growing in the over-50 age

be divided into different groups . Some examples include:

bracket6.

Table 1: Australian hospital use of social media versus USA 4.

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Facebook has the largest number of users internationally of all

internet. An example of a blog can be seen in Figure 1, the

of the social media platforms. At the end of 2012 this number

blog from Sydney Transplant Surgeon Dr Deborah Verran17.

reached one billion users, so if Facebook were a country it would be the world’s third largest in terms of population7. One of every five pages viewed on the internet is currently Facebook. For Australia, with 11.5 million Facebook users,

Figure 1 17.

Forums are another beneficial way for nurses to collaborate. They are a place for members to share information and also

this represents over 50% of the population. Considering that

host chat sessions. Examples on Twitter include #WeNurses18

children under the age of 13 are not supposed to be permitted

and @hcsmanz which is Healthcare and Social Media in

to have a Facebook account, this is a very large proportion

Australia and New Zealand19.

of our population. Twitter has over 465 million users internationally, with people tweeting over 175 million times a day7. As of October 2012 Australia has over 2.1 million users. Australians spend more time than any other country visiting social networks8.

Transplant and nursing-related platforms There are numerous organisations that use different social media platforms. For example, The International Transplant

Legal and ethical implications Many people are afraid to use social media in a professional capacity due to the fear of the legal implications. If common sense principles are applied, then the advantages make social media a beneficial tool for communicating, sharing knowledge and providing expertise and support to others. If you would not share a particular piece of information with a roomful of people, then it should not be shared online20.

Nurses Society has a Facebook page9. This is used for

It is suggested that nurses consult their workplace policy and

promotion of the organisation as well as upcoming conferences

also the forthcoming Australian Health Practitioner Regulation

and education sessions, along with links to relevant articles

Agency (AHPRA) guidelines (not yet formalised!)21. Keep in

and promotion of the achievements of their members. Other

mind that what you post is public and remember to protect

organisations include DonateLife10, The American Society

the privacy of yourself, your employer and your patients.

of Transplantation11, NHS Blood and Transplant12 and the United Network of Organ Sharing (UNOS)13. Some of the organisations use their Web 2.0 profile via social media platforms to increase awareness and education for health professionals, while others direct their focus to the general public with information on organ donation and promotion of fundraising activities.

How to get started It is very easy to join Twitter. Simply log on to www.twitter. com and you can sign up for free. All you need is an email address. You can control the information you see, so if you do not want to see information on a particular person, then you simply do not follow them. You may first like to follow

A number of journals have an established presence on social

people in your area of interest, watch first and then start

media via Facebook or Twitter. These currently include

‘tweeting’ things you find interesting: reply or ‘retweet’. A

The American Journal of Nursing, New England Journal of

useful site is Mashable which has a website22 that is also

Medicine and Nursing Times. They display links to articles

listed on Facebook and Twitter. They have simple useful

and book reviews.

guidelines to get you started and helpful information on the

Many transplanting hospitals across the world use Facebook, Twitter and YouTube – the most prominent hospital perhaps being the Mayo Clinic14. This organisation has accumulated a

terminology.

Conclusion/recommendations

large following with a range of clinical information now being

The Transplant Nurses’ Association has just launched a

shared. The Mayo Clinic also has a full-time department

Facebook page to inform their members of updates including

focused on the promotion of their social media called the

the annual national conference, educational activities and

Centre for Social Media. Examples of Australian hospitals

transplant-related issues.

establishing a presence on social media include Princess Alexandra Hospital in Brisbane15 and The Children’s Hospital at Westmead16.

Social media is changing the way we think about education, knowledge dissemination and research in health care. It is a new way for professional organisations to engage. Transplant

Blogs are another form of social media where an individual or

nurses are encouraged to utilise the resources available and

a group can share information through their own page on the

join the different social media groups.

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TRANSPLANT JOURNAL OF AUSTRALASIA

Figure 1: Dr Deborah Verran’s blog.

References 1. Stokowski L. Social Media and Nurses: Promising or Perilous. Medscape, 2011. 2. The Demographics of social media users report. 2012. Available at: http://www.pewinternet.org/Reports/2013/Social-mediausers.aspx 3. Fred Cavazza. Available at: http://www.fredcavazza.net/ 4. Heidi Allen Digital Strategy. Available at: www.heidiallen.id.au 5. Swoop Digital. Available at: http://www.swoopdigital.com.au/ social-media/facebook-australian-statistics/ 6. Pew Internet. 2012. Available at: http://www.pewinternet.org/ Reports/2012/Mobile-Health.aspx 7. Infographics labs. Available at: http://infographiclabs.com/ 8. Nielsen Social Media Report. 2012. Available at: http://blog. nielsen.com/nielsenwire/social/2012/ 9. International Transplant Nurses Society. Available at: http:// www.itns.org/

12. NHS Blood and Transplant. Available at: http://www.nhsbt.nhs. uk/ 13. United Network for Organ Sharing. Available at: http://www. unos.org/ 14. Mayo Clinic Center for Social Media. Available at: http:// socialmedia.mayoclinic.org 15. Princess Alexandra Hospital. Available at: http://www.health. qld.gov.au/pahospital/ 16. The Children’s Hospital at Westmead. Available at: http://www. chw.edu.au/ 17. Deborah Verran blog. Available at: http://deb-verran.blogspot. com.au/ 18. #WeNurses. Available at: http://www.wenurses.co.uk/ 19. Healthcare and Social Media in Australia and New Zealand. Available at: https://twitter.com/hcsmanz 20. Royal College of Nursing. Social Media Guidelines for Nurses. Available at: http://www.rcna.org.au

10. Donate Life. Available at: http://www.donatelife.gov.au/

21. Australian Health Practitioner Regulation Agency. Social Media Policy. Available at: http://www.ahpra.gov.au

11. American Society of Transplantation. Available at: http://www.as-t.org/

22. Mashable. Available at: http://mashable.com

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Introduction

Transplant Procurement Management – Donation and Organ transplantation is a well-defined successful therapy for patients suffe Transplantation Institute (TPM – DTI): a new formula to stage organ failure; however, the development of an organ transplantation pr success in organ donation not possible without a parallel system focused on deceased organ donation. The implementation of a successful deceased Martí Manyalich • TPM – DTI Foundation, Barcelona, Spain

organ donation system depends o

factors such as: an appropriate legislation framework, a national structure, a Abstract

investment budget, and training of human resources. The Transplant Pro

Organ transplantation is a well-defined, successful therapy(TPM) for end-stage organprogram failure patients, which would possibleof Management training is a key factor in not thebesuccess without a parallel system focused on deceased organ donation. An adequate donor procurement organisation seems to be the Spain, rates: it is an usually a medical doctora who responsible deceased key to achieving a sustained increase in donation adequate legal framework, centralisoffice in supportfor of the entire process, experienced and innovative transplant teams, in-house transplant coordinators, quality control systems and investment processes within the hospital. in training and educating health professionals provide a constant growth in the organisation of organs for procurement and transplantation.

this pr organ

The Deceased The most effective model for organ donation worldwide is theOrgan SpanishDonation one – withProcess a donation rate of 35.3 pmp in 2011.

The deceased organ donation processTraining is a complex oneOrgan andDonation involves several Donation figures were compared before and after the implementation of the European Program on (ETPOD) intervention, showing an increase of cadaveric donors detected and organs procured. Transplant Procurement and non-medical specialties. As shown in figure 1, the process starts with the Management (TPM) – a refinement of the ETPOD program, provides demand-driven, high-quality organ donation and transplant coordinator training that facilitates transferorgan of knowledge professional form an of the possible donorsandand finishes competencies. when someItsofgraduates the organs retrieved h excellent, worldwide network of donation professionals. transplanted. Using a systematic approach for this process will facilitate the

TPM boasts a network of 9144 qualified, trained professionals from 101 countries that sustain the program in their local area. development of an organ procurement and therefore, the progressive TPM has created and disseminated educational resources throughout Europe and the United States.

inc

Introduction

deceased donation activities .

Organ transplantation is a well-defined successful therapy for patients suffering end-stage organ failure; however, the development of an organ transplantation program is not possible without a parallel system focused on deceased organ donation. The implementation of a successful deceased organ donation system depends on several factors such as: an appropriate legislation framework; a national structure; a national investment budget; and training of human resources. The Transplant Procurement Management (TPM) training program is a key factor in the success of this process. In Spain, it is usually a medical doctor who is responsible for deceased organ donation processes within the hospital.

Figure1. The Deceased Organ Donation Process Figure 1: The deceased organ donation process.

The most effective model for organ donation worldwide is the Spanish one. S The deceased organ donation process The most effective model for organ donation worldwide is the shown a progressive and sustained increase in the number of deceased orga

The deceased organ donation process is a complex one Spanish one. Spain has shown a progressive and sustained and involves several medical and non-medical alongspecialties. the years. In 2011, donation reached 35.3 pmp. increase in the number of deceased organ donors along the As shown in Figure 1, the process starts with the detection years. In 2011, donation reached 35.3 pmp. The development and success of the Spanish organ donation activity is the res of possible organ donors and finishes when some of the The development and successintegrated of the Spanish donation organs retrieved have been transplanted. Using a systematic following set of measures, being properly andorgan working together to activity is the result of the following set of measures, being approach for this process will facilitate the practical

basis of the Spanish Modelintegrated of Organand donation: properly working together to form the basis of development of an organ procurement and, therefore, the the Spanish model of organ donation: progressive increase of deceased donation activities. Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Legal framework. Spanish law includes the protocol for brain death diagnosis; organ retrieval and presumed consent for deceased organ donation (opt-out system). Nevertheless, an informed or opting-in model has always been applied. Donor families are always approached, to find out the wishes of the deceased, to ask for their permission if the deceased’s wishes are unknown and to identify potential risk of infections or viral diseases. The network. The Organización Nacional de Trasplantes (ONT) is the main authority, entitled to act as an organsharing office, supporting the transplant team’s transportation, managing the national waiting lists, registries and statistics, developing protocols and guidelines, as well as broadcasting accurate information to the community. In-house transplant coordinators. Among others, the role of the transplant coordinators is to detect potential donors and to support the multidisciplinary team members involved in the process to successfully achieve the organ procurement. Hospital expenses reimbursement. Costs incurred in the process of procurement and transplantation is paid by the regional health authorities. Reimbursement covers human and material resources required to efficiently develop the donation and transplantation program within the hospital. Audits on brain deaths and the outcomes of donation in the intensive care units (ICUs) take place to identify the circumstances that lead to donation losses. Audit of potential donors’ requires the retrospective review of medical charts. Final data allows determining the potentiality of organ donation according to hospital characteristics. Mass media. To create an atmosphere of trust and transparency about organ transplantation, a 24-hour hotline and a website are available for permanent consultation. Both instruments provide legal and statistical information about organ donation, reducing adverse reactions against fake transplantation stories, thus increasing public confidence. A public health care system is required to implement a donation program such as the Spanish one, to sustain a free and fair access to transplantation programs as well as to fully cover post-transplantation immunosuppressive drugs. Professional education and training programs should be made available to all health professionals involved in the process.

Discussion The TPM training program has been distinguished as an international educational program that aims to increase the quantity, quality and effectiveness of organ and tissue donation for transplantation, by training health care professionals involved in the organ donation process. The 14

TPM training program provides demand-driven, highquality training that facilitates the transfer of knowledge and the development of professional competencies as well as providing an excellent framework for worldwide networks of donation professionals. Moreover, the TPM training program suggests strategies on how to develop successful organ procurement programs.

Learning objectives • To promote a broad, international perspective on the organ and tissue donation process. • To promote quick and efficient hands-on learning. • To improve knowledge and raise awareness among health care professionals involved in the donation and transplantation process. • To facilitate best practice exchange through crosscultural sharing. The TPM training program was launched in 1991 under the auspice of the Universitat de Barcelona (UB) with the technical and financial support of the ONT. Soon afterwards, the TPM training program acquired an international dimension. In 1994 it gained the recognition of the Transplant Committee of the Council of Europe. It was awarded the TTS-Genzyme Award for Education and Training in Transplantation by The Transplantation Society (TTS) in 2008. Throughout the years, the TPM training program has shaped its corporate image, and designed and constantly updated its course contents. It has produced a wide range of teaching material and developed its own software and technical equipment for practical sessions. Special attention has been given to the course’s curriculum in order to meet the specific educational needs of each country. Advanced courses are yearly implemented in five languages (Spanish, English, Italian, French and Portuguese). When training is required in other languages, all educational material is translated and interpretation during lectures is provided. Nowadays, TPM training represents the formal Transplant Coordination Training Program in Italy (Centro Nazionale Trapianti – CNT), France (Agence de la Biomédecine – ABM) and Portugal (Autoridade para os Serviços de Sangue e Transplantação – ASST). Moreover, it boasts a worldwide network of 9144 qualified trained professionals from 101 countries that sustains the training in their area. Due to its affiliation to the UB, the TPM training program offers university certifications, postgraduate diplomas and master degrees. The TPM training program has contributed to developing the Spanish model of organ donation by implementing face-

Volume 22 Number 1 – March 2013

University Of Barcelona (UB), the TPM training program offers university certifications, post-graduate diplomas and master degrees.

TRANSPLANT JOURNAL OF AUSTRALASIA

Figure 1. Number of participants that attended face-to-face, on-line and blended TPM training programs per continents.

Figure 2. Number of participants that attended face-to-face, online and blended TPM training programs per continent.

The TPM training program has contributed to developing the Spanish Model of organ

donation by implementing face-to-face, to-face, online and blended training programs at different

on-line and sessions blendedaretraining programs at Theoretical followed by practical sessions

and simulations to facilitate proactive learning. However, learning professional levels. However, TPM training goes beyond different professional levels. However, TPM training goes beyond Spain, due to its goes well beyond books to shared dining, cultural networking Spain, due to its ongoing collaboration with donation experts ongoing collaboration withanddonation experts from Europe, the United States, Australia and lifetime friendships! from Europe, the United States, Australia Asia.

and Asia.

The TPM program includes main topics of the donation and transplantation as: The fields TPMsuch program

includes main topics of

as: • Detection. § and Detection • Identification selection of potential donors.

Coordinated by Dr Marti Manyalich, founder and director of the TPM training program, it works in partnership with the donation and transplantation fields such international organisations, hospitals and universities in order to include in the faculty team, professional experts from Europe, Asia, Australia and America. Several former TPM program participants have become of national, regional and/or local organisations, supporting the improvement of organ procurement programs. Within the network created, the TPM program has been providing customer support and building action plans to promote organ donation among health professionals and the general public. This network of trained health professionals has also empowered TPM to build up training programs on a larger scale within the European Union (EU) and worldwide. Therefore, TPM developed, along with 20 European partners the European Training Program on Organ Donation (ETPOD), an Action Plan on Organ Donation and Transplantation (2009–2015).

§

Identification and selection of potentialmanagers donors

§

Brain death diagnosis

§

Maintenance of brain-dead donors

§

Family and social approach

• Brain death diagnosis.

• Maintenance of brain-dead donors. • Family and social approach. • Organ retrieval.

• Preservation and allocation criteria. • Recipient selection. • Tissue recovery, processing and distribution. • Quality and safety requirements associated to organ, tissues and cell donation and transplantation. • Organisation of a transplant coordination office. • Global view on the ethical and legal aspects of the process.

Volume 22 Number 1 – March 2013

The objective of this study was to improve the donation rates in 25 target areas (TAs) from 17 European countries by providing an advanced training program at three different professional levels. A multicentre, prospective, before and after study including 25 TAs with active transplant programs was conducted from January 2007 until December 2009. 15

TRANSPLANT JOURNAL OF AUSTRALASIA

An intervention based on a collaborative methodology was designed: The European Training Program on Organ Donation (ETPOD). ETPOD was a training program designed for three different professional levels: • Essentials in organ donation. • Professional training for junior transplant coordinators. • Organ donation quality management. The course takes into consideration the participants’ educational needs, expectations and requirements, national laws and clinical practice. Data collection was performed before and after the implementation of the training course and donation figures were compared between the two periods. Feedback questionnaires revealed a high degree of satisfaction among participants regarding lectures, organisation, information provided before and after course registration and job applicability. The number of cadaveric donors detected increased from 15.7 ± 14 (95%CI: 9.8-21.6) in January – June 2007 (survey S1) to 20.0 ± 16.7 (95%CI:13-27.1) in January – June Figure 2. ETPOD map with the 25 TAs from 2009 (survey S2) (p=0.014) and procured organs increased

from 49.7 ±Turkey. 47.6 (95%CI: 29.6-69.7) in S1 to 59.3 ± 51.1 (95%CI:37.8-80.8) in S2 (p=0.044).

To conclude, ETPOD (under the management of TPM) provided a successful training program by creating quality materials with the support of the participating organisations and the recognition of the European Commission (Action plan on Organ Donation and Transplantation, 2009-2015). It resulted in the identification and training of professionals active in the organ and tissue donation process. The educational tools created have been disseminated further after the official closure of the project as follows: • Participants from 22 countries, belonging to the European Transplant Network and the Mediterranean Transplant Network respectively, have benefitted from Training for Trainers Programs. • Nineteen new target areas from 18 different countries from Asia, Europe and South America have been established as following: Frantz Fanon CHU Blida (Algeria), Brazil, Nicosia (Cyprus), Bulgaria, Croatia, Czech Republic, Kasr Al Aini University Hospital (Egypt), Estonia, Papageorgiou (Greece), Transplant Center – Ministry of Health (Israel), Lebanon, Lithuania, Tripoli Central Hospital (Lybia), Mater Dei Hospital the 17 partner countries within Europe and (Malta), Palestine Medical Complex Ramallah (Palestine), Slovenia, Tunisia, Istanbul region and Central – Eastern Region (Turkey).

17 European countries 20 partner organizations 25 target areas

Austria – UHV Bulgaria – EAT Promoter TPM Cyprus – PSTC Estonia – TUC France – ABM Germany – DSO Greece – EOM Italy – FITOT Italy – ISS Lithuania – NBT Poland – Poltransplant Poland – MUW Portugal – ASST Romania – UTM Slovak Rep. – UHM Slovenia – Slovenija-Transp Spain – IL3 Spain – IMAS Sweden – MUH Turkey – AUTC

Figure 3. ETPOD map with the 25 TAs from the 17 partner countries within Europe and Turkey.

The educational tools created have been disseminated further after the official closure of 16

the project as follows:

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TRANSPLANT JOURNAL OF AUSTRALASIA

124 Essentials in Organ Donation (EOD) seminars carried out in the above• One hundred and twenty-four Essentials in Organ mentioned target areas. Donation (EOD) seminars carried out in the abovehealthcare professionals have mentioned6523 target areas.

Among other strategies of the Transplant Procurement Management – Donation Transplantation Institute (TPM –

been trained. Moreover, educational DTI) is to increase deceased organ donor activity worldwide.

materials have been translated and adapted to the reality and needs of each

• A total of 6523 health care professionals has been The Spain, Europe and USA (SEUSA) project aims at trained. Moreover, have beenhas developing international cooperation in organ donation country educational involved. materials A database been created (http://www.etpodtranslated and adapted to the reality and needs of to improve deceased donation and transplantation and dissemination.eu) to follow upcreated EOD seminars and their impact on organ each country involved. A database has been maximise donor rates. In June 2007, the SEUSA program (http://www.etpod-dissemination.eu) to follow up EOD (under the management of TPM) started in the Apulia region donation. seminars and their impact on organ donation. – Italy. Here, the donation/transplantation rate has shown

The implementation of EOD seminars in Madeira (Portugal) had a high impact upon

an increasing tendency until 2003, when the rate of organ The implementation of EOD seminars in Madeira (Portugal) donation the proving effectiveness of thestarted ETPOD trainingtoprogram. donation to decrease a lower rate compared to had aorgan high impact upon parameters, organ donationproving parameters, the national one (7DPMP versus 20DPMP). Comparing the the effectiveness of the activity ETPOD in training program. Organfrom 12 donor pmp to 36 donors pmp Organ donation Madeira improved by actual data previous to SEUSA project (2005–2007) and donation activity in Madeira improved from 12 donor pmp endpmp of 2010. post the SEUSA project, we found an increase of 36.5% of to 36 the donors by the end of 2010. BD diagnosis (83 versus 113.3) and total number of donors Due to its feasibility, new organizations representing large populations and extended Due to its feasibility, new organisations representing large increase a 47% (89 versus 131). populations and extended geographical areas have expressed geographical areas have expressed their interest to implement the training program in The SEUSA program started in Lebanon in November their interest to implement the training program in their their countries. countries. 2009 (0 DPMP organ donation rate). After one year of

Austria, Bulgaria, Croatia, Czech Republic, Estonia, Hungary, Italy, Latvia, Lithuania, Poland, and Slovenia

Algeria, Cyprus, Egypt, Greece, Israel, Lebanon, Libya, Malta, Palestine, Tunisia, Turkey

maximizing donor rates. In June 2007, the SEUSA program (under the management of TPM) started in the Apulia region - Italy. Here, the donation / transplantation rate has shown an increasing tendency until 2003, when the rate of organ donation started to decrease to a lower rate compared to the national one (7DPMP vs. 20DPMP). Comparing the actual data previous to SEUSA project (2005-2007) and post the SEUSA project, we found an increase of 36.5% of BD diagnosis (83 vs. 113.3) and total number of donors increase a 47% (89 vs. 131). Brain Death in Puglia

Utilized DBD Donor in Puglia

Among other strategies of Transplant Procurement Management – Donation 36,5 %

Transplantation Institute is to increase deceased organ donor activity worldwide. 47 %

The Spain, Europe and USA (SEUSA) project aims at developing international cooperation in organ donation to improve deceased donation and transplantation and

SEUSA program started in Lebanon in November 2009 (0 DPMP organ donation rate).

Volume 22 Number 1 – March 2013

(52% of the total SND), 9 organ donors and 55 cornea donors were obtained. Despite the good results in detection of the potential donor, however, the donation rate in this

TRANSPLANT JOURNAL OF AUSTRALASIA

region is still low due to the high family refusal rate (family refusal rate near to 90%). The project is currently still in progress in both regions. Lebanon Brain Death Diagnosis Vs. SND

52 % 74 %

project implementation, 2501 alerts for potential donors were

Council of Europe Recommendation (Rec (2006)16) on quality improvement programmes for organ donation. Available on: has https://wcd.coe.int/wcd/ViewDoc.jsp?id=1062721&BackColorIn contributed to the improvement of 87 brain deaths were diagnosed (52% of the total SND), 9 ternet=9999CC&BackColorIntranet=FFBB55&BackColorLogge thedonors organand donation/transplant both regions.d=FFAC75 In addition, it may represent an organ 55 cornea donors weresystem obtained.inDespite

received, 139 severe neurologicalthat damage identified, Our results demonstrate the (SND) SEUSA program

the good results in detection of the potential donor, however, the donation rate in this region is still low due to the high family refusal rate (family refusal rate near to 90%). The project is currently still in progress in both regions. Our results demonstrate that the SEUSA program has contributed to the improvement of the organ donation/ transplant system in both regions. In addition, it may represent an example of valuable and replicable strategy to revolutionise organ and tissue activity in other countries.

Conclusion In summary, an adequate organisation seems to be the key to achieving a sustained increase in donation rates: An adequate legal framework; a central office in support of the entire process; experienced and innovative transplant teams; in-house transplant coordinators; quality control systems and investment in training and educating health professionals establishes a basis for improvement in organ procurement and transplantation outcomes. Although multifactorial approaches are needed to tackle organ donation, training of professionals is highlighted as a major factor in improving the number and quality of organs and tissues for transplantation. TPM training programs provide demand-driven, high-quality training that facilitates the transfer of knowledge and the development of professional competencies as well as excellent framework for worldwide networks of donation professionals.

Bibliography Communication from the Commission. Action Plan on Organ Donation and Transplantation (2009–2015): Strengthened Cooperation between Member States. Available on: http:// ec.europa.eu/health/ph_threats/human_substance/oc_organs/ docs/organs_action_en.pdf

Dominguez-Gil B, Delmonico F, Shaheen FAM et al. The critical pathway for deceased donation: reportable uniformity in the approach to deceased donation. Transplant International 2011 Apr; 24(4):373–8. Europa (2007, May 30). Commission proposes actions to increase organ donations and transplants. Retrieved from the EUROPA the gateway to the European Union Web site: http://europa.eu/ rapid/pressReleasesAction.do?reference=IP/07/718&format=HT ML&aged=1&language=EN&guiLanguage=enm Manyalich M, Valero R, Paredes D & Paez G. Transplant Procurement Management: Transplant Coordination Model for the Generation of Donors. Transplant Coordination Manual. TPM-IL3 – Universitat de Barcelona, 2007. Matesanz R & Dominguez B. Strategies to optimize deceased organ donation. Transplantation Reviews 2007; 21:177–188. Matesanz R & Miranda B. A decade of continuous improvement in cadaveric organ donation: The Spanish model. Journal of Nephrology 2002; 15:22–28. Paez G, Valero R & Manyalich M. Training of health care students professionals: a pivotal element in the process of optimal organ donation awareness and professionalization. Transplantation Proceedings 2009 Jul–Aug; 41(6):2025–9. Procaccio F, Rizzato L, Ricci A & Venettoni S. Indicators of efficiency in potential organ donor identification: preliminary results from the national registry of deaths with acute cerebral lesions in Italian intensive care units. Organs, Tissues and Cells 2008; 2:125–129. Rodríguez-Arias D, Wright L & Paredes D. Success factors and ethical challenges of the Spanish Model of organ donation. The Lancet 2010 Sept; 376(9746):1109–1112.

Salim A, Berry C, Ley EJ et al. In-House Coordinator Programs Improve Conversion Rates for Organ Donation. Journal of Trauma 2011. Shafer TJ, Wagner D, Chessare J, Zampiello FA, McBride V & Perdue J. Organ Donation Breakthrough Collaborative: Increasing Organ Donation through System Redesign. Critical Care Nurse 2006; 26:33–48. © 2006 American Association of Critical-Care Nurses. Published online http://www.cconline.org Third WHO Global Consultation on Organ Donation and Transplantation: striving to achieve self-sufficiency, 23–25 March 2010, Madrid, Spain. Transplantation. 2011 Jun 15; 91 Suppl 11:S27–8. Uryuhara Y, Hasegawa T, Takahashi K et al. Approaches to Solve Organ Shortage in European Countries. Ishoka 2004; 38(2):145–162. IRODAT registry www.tpm.org (last review 30.12.2011).

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ARTICLE

TNA Patient Education Project (PEP) needs analysis survey results Libby John • TNA National Secretary

Background The Transplant Nurses’ Association (TNA) has always had a significant focus on the provision of transplant patient education and acknowledges the importance of good education in successful transplant patient outcomes. This is reflected in part of the TNA’s mission statement, which outlines the TNA’s goal: ... to foster and facilitate a collaborative environment for transplant health professionals to provide the highest attainable level of patient care. This is done through the following objectives: 1. Promote quality holistic care for patients and families involved in the transplantation process. 2. Provide standards of care for nurses and allied health professionals caring for such patients. 3. In conjunction with other multidisciplinary health team members, foster open communication to ensure the maintenance of optimal physical and psychological care for the patient and family. Effective patient education is crucial in the provision of the highest attainable level of holistic patient care, and encompasses all members of the health care team as well as the patient and their family. Good educational tools help nurses plan, design and apply appropriate short- and longterm interventions. They also empower patients and carers to make informed decisions, change behaviours and place an emphasis on wellness and preventative care1. Effective education strategies ultimately improve patient compliance, which is a key factor in achieving optimal post-transplant outcomes. In 2000, the TNA recognised the need for a comprehensive, evidence-based patient education program that could be utilised by all transplant health professionals in Australia to promote good transplant recipient self-management. Following discussions with Roche Pharmaceuticals, a TNA expert working party was formed to write the content for what was to become the TNA Transplant Diary: a resource folder and care planner for all transplant recipients. Roche kindly provided the resources required to publish and produce the distinctive A4 binder and pages, as well as the pocket-size care planner. Roche’s CC Care booklets were subsequently

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designed to be incorporated into the TNA Diary Resource folder and complemented the extensive transplant healthrelated content. In 2011, Roche was no longer able to produce the TNA Diary which was widely used in transplant centres across the country. The TNA was concerned that this valuable resource would not be available and that some transplant units would no longer have educational materials available. Roche was, however, in the position to kindly provide the TNA with a financial grant to be used to continue the provision of transplant patient educational material. The TNA Patient Education Project (PEP) was subsequently devised by the TNA National Executive to ensure cost-effective, efficient and relevant utilisation of the Roche financial grant. To ensure any educational materials developed were going to meet the needs of the educators and their transplant recipients, it was decided to survey the TNA membership to establish some of the perceived needs related to educational content and mode of delivery. Therefore, a needs analysis was undertaken.

Aims of needs analysis Demographic of analysis Transplant nurses/coordinators who were involved in transplant patient care and/or education. Due to institutional ethics requirements only TNA members were surveyed.

Survey mode A web-based survey monkey questionnaire was emailed to all TNA members with a three-week response deadline. Questions consisted of multiple-choice and free-text answers.

Aims of analysis To determine themes and invite feedback relating to the following issues: 1. Do we need (that is, is there a benefit) to provide standardised transplant education to transplant recipients around Australia? 2. W hat patient educational tools are already being used? 19

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3. Where are the perceived deficits in pre- and posttransplant patient education provision currently? 4. What are the crucial components of patient education? 5. What is the best medium and format to assist/promote with learning? 6. Is educational information required in language other than English? 7. Any other feedback/suggestions?

Results of needs analysis Q1. Do you feel it would be beneficial to provide standardised (that is, current, consistent and evidencebased) transplant education to transplant recipients around Australia?

Response Feel it would be difficult due to issues with different information required for each organ specialty Yes, Australia should use standardised transplant educational material Specific patient information is required for different circumstances e.g. “rural patients”, “individual medical consultant preferences”, “individual patient characteristics” A combination of standardised and unitspecific patient information (or adapt unit info to contain some standardised information) would be beneficial

% 13 27 13

have available to use for your transplant recipients?

Response Group education sessions Written/printed information Medication education chart Verbal education Limited, mainly informal Unsure Individual education sessions Slide presentation

% 18 53 6 6 6 12 6 6

Q4. Where do you think the deficits are in pre- and post-transplant education provision currently (that is, what could be improved)?

Q2. Would you use a standardised national transplant patient education tool developed by the TNA if it was provided to your unit? Response

Yes, in conjunction with/in addition to unitspecific information

No, have our own unit-specific information

Unit policy may prevent use of TNA educational material

Maybe, depending on the content of material

Q3. What patient educational tools do you currently

Response ICU staff involvement in commencing rehabilitation Information on home state support (for patients transplanted interstate) Long-term post-transplant issues/ screening Reinforcement of education (patients forget) Supplemental information for units, for example, CMV fact sheet Education sessions give too much information at once

% 2 2 7 5 2 9

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DVD/CD so patient can watch at own pace, multiple times Internet-based education information Newer technologies Skin cancer information Issues for rural and remote patients, for example, financial Patients don’t utilise education provided Patients need more post-transplant information provided in pre-transplant education Education can be ad hoc (no consistency), depending on experience of staff providing education Need educational material for younger patients Encourage self health management Patients supporting one another Donor correspondence Information in different languages Lack of resources to provide education Lack of up-to-date information Lack of standardised information

12 12 2 5 2 7 14 5 5 2 2 2 5 5 9 7

Q5. What do you feel are the key learning objectives for transplant patient education?

Q6. What constructive feedback have you received from your patients regarding their education needs? Response Lack of education in critical care setting Talking with other transplant patients Lack of non-English material Like written/reading material as patient can refer back to it Individualised education DVD that patient can watch with family Difficulty producing good speakers and topics for education sessions Information about transplant operation Despite extensive education, “not prepared” for post-transplant Learn more about what to expect posttransplant Lack of nursing time to elaborate on written material or give advice Would be good to use Skype Need to provide updates for long-term transplant recipients Positive feedback received about current education program in unit

% 3 16 3 12 10 3 3 3 12 6 6 3 3 16

Q7. What do you think is the best medium and format to assist/promote patient learning? Response Visual guide Transplant patients talking to other transplant patients One-on-one teaching Smart phone apps Depends on patient age, language, level of intelligence, “everyone learns differently” Many different mediums should be used, that is, all of the above Collaborative group work, role play, interactive methods Response All of the above Involving primary care giver Organ-specific problems Pre- and post-transplant information should be separate Disease recurrence and management Compliance Not too much information at once PBS and medication costs Tissue typing consent Fluid balance Pain management Information for country patients Failing transplant Information for non speaking patients FAQ Who to contact for problems and when

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% 33 7 7 13

% 8 16 8 8 33 16 8

Q8. Is educational information required in language other than English?

7 7 7 15 7 7 7 7 7 7 7 7

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Response Greek Italian Chinese (Mandarin and Cantonese) Vietnamese Turkish Aboriginal (regional dialect not stated) Indonesian Thai Arabic “Asian” language Burmese Dinka Malay “lots/every known ethnicity” should utilise interpreting services

% 26 32 41 44 3 3 3 3 21 6 6 3 3 9 3

Q9. Do you have any other feedback/suggestions that could help the TNA with planning transplant patient educational material?

Educational material should cover generic topics Review current patient educational material being used in each transplant unit BMT education requires different material

4 8 4

Conclusion Responses In May 2012, 334 members were emailed and invited to participate in the online survey. A link to the survey monkey questionnaire was highlighted in the email. All members who completed the survey went into a draw to win a $100 gift voucher. On 30 June 2012, 120 members who received the survey email had viewed it. A total of 58 members completed the survey (17% of overall membership, 48% of those who actually opened email).

Themes • The majority of respondents were in favour of standardised transplant patient education. • The majority indicated they would use standardised education material, in conjunction with unit-specific material. • The majority currently use written education materials. • Education programmes need to be able to be “individualised” to account for differing needs of recipients. • The majority would like to utilise DVD/internet-based educational materials.

Response Patient survey/focus group to assess needs Separate educational material for Aboriginal patients Pre- and postoperative education provided separately Should not discount quality information contained in cc care booklets Educational material should be provided in DVD format Address cultural diversity and beliefs in transplantation Share educational via web-based/portal/ electronic/PDF format Simple written format Other languages Educational material should be research/ evidence-based Educational material should be organ-/age-/ unit-specific Educational material should cover the whole transplant journey Educational material should include more about the organ donation process

% 12 4 4 8 16 4 12 8 4 4

• The majority reported patients found it beneficial talking to other transplant recipients pre-transplant. • Despite extensive pre-transplant education, many patients

are

”not

prepared”

for

post-transplant

experience. • There is a need for educational material to be supplied in non-English languages. • Patient group should be surveyed to assess their perceived needs.

Recommendations These survey responses will hopefully guide the TNA PEP working party in planning the development of new national transplant patient educational materials. The common themes above will be explored further by the working party

to gain additional information about current needs.

Reference

1. Ford E & John E. Patient Education for the Transplant Recipient. In: Core Curriculum for Transplant Nurses. Missouri: Mosby Elsevier, 2008, pp. 51–53.

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ARTICLE

Organ donation declared the winner in Donatelife Week 2013 David Cornford • Communications Advisor, Donatelife Victoria This year’s DonateLife Week 2013, Australia’s national awareness week for promoting organ donation, presented scores of community activities in every state and territory around Australia between 24 February and 3 March. In Victoria, organ donation was the winner on Sunday 24 February, with the Robyn Hookes Shield launching Victoria’s DonateLife Week 2013 program in Bendigo. The special match between the Australian Transplant Cricket Team and the Bendigo DonateLife Everyday Heroes was set up to highlight the need for families to talk about their organ donation wishes and join the national organ donation register. The Everyday Heroes team won by six wickets. David Hookes was an organ donor in 2004, whose generosity gave new life to seven other Australians. The event reflected the generosity of donor families and the amazing journeys of transplant recipients. Attended by Robyn Hookes, wife of the late great cricketer and organ donor David Hookes, players also included Rob Quiney, Australian Domestic Player of the Year 2011 and Test Player, Tony Dodemaide, former Test Player and Chief Executive of Cricket Victoria, and many others. The crowd was addressed by the Federal Parliamentary Secretary for Health the Hon. Catherine King MP, Victorian MLC Mrs Donna Petrovich, donor family representative Jon Seccull and Kevin Green, transplant recipient and Chair of Australian Transplant Victoria.

The message for DonateLife Week 2013 around Australia was “MAKE YOUR WISH COUNT”. DonateLife Victoria encourages everyone to discover the facts about organ donation, decide and register their decision with the Australian Organ Donor Registry, and then discuss your wishes with your family. More information on organ donation can be found at www.donatelife.gov.au

Mrs Donna Petrovich MLC, Victorian Upper House Member for Northern Rivers representing the Victorian Minister for Health.

In Australia, family consent is always sought before donation can proceed. Yet family consent rates remain at less than 60%. If more knew the donation wishes of loved ones we could change the lives of so many more Australians. In 2012, 92 Victorian organ donors enabled 267 Australians to receive life-saving transplants.

Helen Opdam – State Medical Director of Donatelife.

Federal Parliamentary Secretary for Health, the Hon Catherine King MP, Federal Member for Ballarat, Jon and Michelle Seccull (donor family) and Helen Opdam.

Kevin Green and Damian Hurrell (NDS Ballarat) presenting the winning trophies

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Rocky Mountain High, Colorado Janine Sawyer • CNC, MsN Hepatology Department of Gastroenterology The Children’s Hospital at Westmead, NSW

This was a fabulous conference on many levels. Firstly, to my joy and delight, it was all liver disease and liver transplantation (OLTx) – fabulous! Secondly, (and this is the best bit) it was ALL paediatric. My two loves combined! And thirdly, it was in the loveliest spot that you could imagine to hold a conference, Snowmass-Aspen, Colorado, boasting beautiful countryside and very friendly and warm people. The conference was hosted by the Cincinnati Children’s Hospital and was, without a doubt the best-run conference I have attended. This was attributable to how the daily schedule was run. There were early 7 am starts with the conference day finished by 1 pm. This program allowed attendees to head outdoors and enjoy the wonderful countryside, which I did! You may be thinking, “well that is not how one should attend a conference … having the afternoons free!” In reality, it is very sensible. Most conferences start at 9 am, with lunch from 1 to 2 pm and then most afternoon sessions typically are not as well attended as the morning ones … or people are nodding off! So, as you can see I was in heaven! Whilst I enjoyed getting out in the afternoons, the morning sessions were jampacked full of speakers (‘movie stars’ of the paediatric liver community), and relevant information, so my mornings were just as fun and exciting as my afternoons. I must say, though, we compare pretty well here at The Children’s Hospital at Westmead. Staffing in these big American hospitals is something hard to comprehend – they have so many nurses running their services, for every facet of liver disease and transplantation. All of the nurses were amazed that in our service we have only two nurses. I would like to sincerely thank the Transplant Nurses’ Association (TNA) for their very generous scholarship, which allowed me to attend the 34th Annual Aspen Conference in July 2012. This annual conference has been running for 34 years and is always held in Aspen. By American standards, it is a relatively small conference – only 200 attendees. However, this makes it a very worthy conference, as it is more intimate and allows greater interaction amongst all the attendees. I have been very fortunate to have established contacts and made some great friendships within the international paediatric liver nurses’ community, through attending this conference. I would also like to thank Dr Michael Stormon, Staff Specialist Hepatology at The Children’s Hospital at Westmead, for his support for me to attend the conference. 24

I will endeavour to show how I spent my five days at the conference in Snowmass. I think you will want to be a paediatric liver nurse after reading this!

Day one: Neonatal cholestasis The spectrum is changing for this term. A diagnosis of neonatal cholestasis once covered many unknown or undiscovered diseases. This blanket diagnosis potentiated a delay in the treatment or provision of inappropriate treatment of these infants. Now, there are many ‘new’ names – for example, mutations in genes encoding canalicular transporters – that is, ATP8BI, ABCB11 and ABCB4. Thanks to the advances in technologies and our knowledge of the aetiologies and progression of neonatal cholestasis disease processes, our

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ability to target the diagnostic evaluation of presenting infants has improved dramatically. Utilising clinical criteria associated with specific laboratory evaluations, imaging, genetic and histological features, these infants are receiving early diagnosis and appropriate treatment Different country, same problems – just as we have difficulty with infants presenting with prolonged jaundice (some as late as 12 weeks old), so too do my international colleagues. Early diagnosis of biliary atresia (BA) before the age of eight weeks is important to prevent ongoing liver damage. Internationally, the problems associated with late diagnosis of BA will continue. Issues such as early discharge from maternity hospitals, decrease in health care nurse interactions with infants (in NSW they will be seen usually day 7 in the home, but then their next scheduled follow-up is not until eight weeks of age) and parents being told it is “OK” and “normal” that a infant is jaundiced (even in excess of 10 days old) are a few of the compounding factors. Early diagnosis and appropriate surgical treatment (Kasai procedure to facilitate drainage of bile) may delay the need for liver transplantation. Infants who fail to thrive, six months post-Kasai procedure are more likely to require liver transplantation by 24 months of age and have an associated higher mortality rate. 1 pm rolled around all too fast; however, I had pre-booked a fly fishing afternoon. My fisherman guide Dale picked me up in the truck and off we headed down to the Frying Pan River. I donned my waders, gumboots and hat and spent the next 4½ hours up to my waist in running water. I was in heaven and – lucky for me – I had the most patient guide (he read me like a book, much to my horror). Fly fishing looks so easy but it is a very skilled action that is required to cast the line and wait and not yank it back too violently when one of the slippery trout nibble at the fly on the end … like I managed to do time and time again. One plant and four trout later I was back at the hotel warming up again. If you have a chance to go fly fishing, I recommend it.

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Day two: Hepatitis and cholangiopathies The importance of vaccination and prevention of disease spread was again highlighted in these interesting sessions. We are fortunate to live in countries where childhood immunisation is considered a right and we are all aware of the importance of immunising our patients against the preventable hepatitis A (HAV) and hepatitis B (HBV) viruses. Hopefully, we will follow suit like the Americans and include HAV as part of the childhood schedule, as it will be advantageous for our children and general community, reducing the spread of HAV during outbreaks. My overseas counterparts experience the same difficulties as I do in my practice – children, who have been exposed to the risk of contracting HBV or hepatitis C (HCV) from their mother at time of delivery, being appropriately diagnosed and referred for ongoing management in a timely manner. Given that there are now evidence-based guidelines available for children infected with the HBV and HCV virus from birth, it seems to me and other paediatric health care professionals, that we have this ‘identifiable’ group of at-risk children not being offered a diagnostic test. If they were adult and presented with at-risk factors, they would be offered a test. This was also highlighted in JAMA 2010, with the discussed paper titled “Scant attention to paediatric hepatitis C means most children are left behind”. If, as a society, we are serious about identifying HBV/HCV to treat and prevent further spread of these viruses, the equation must include identifying at-risk children. As in America, we at The Children’s Hospital at Westmead are treating children who are HCV-positive with pegylated interferon and ribavirin. This treatment regimen is usually for children with genotype 3 HCV, as they respond

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better with sustained virological rates (SVR) 93–98%, reduced treatment time, their side effects are more manageable, and there is also the advantageous psychological benefit of not harbouring an infectious virus. Reassuringly, many large paediatric centres in the USA and Europe follow the same practice we do, and are checking genotype 1 for the IL28B before treating. Unfortunately, paediatric clinical trials into the use of agents such as bocepravir and telepravir are not in progress. So, whilst triple therapy (pegylated interferon, ribavirin and bocepravir or telepravir) will benefit the adults with Genotype 1 (G1) HCV, it will be some time away for the paediatric cohort. I know very little about Hepatitis E (HEV) – (I knew Bear Grylls could get it from eating the raw zebra meat that he ate in one of his TV shows), except that it is contracted similar to HAV, often from faecal-contaminated drinking water and raw meats. However, I was unaware of its prevalence. A study released in 2012, in Hepatology, discussed the global burden of HEV in 2005, which saw 20,100,000 symptomatic cases resulting in 70,000 deaths and 3000 stillbirths. Pregnant women are more at risk of dying if infected. A vaccine has been developed; however, further studies are required to ascertain its ability of long-term protection. So for our patients, big or small, with liver disease, it is imperative that we ensure they are adequately immunised for the preventable hepatitis viruses and educated about minimising risk of infection of those viruses that we are still waiting for a vaccine. 1 pm rolled around again and I had signed my name up for white-water rafting on the Colorado River. Afraid? Yes, but as the saying goes, “when in Rome …” The bus collected 30 other brave attendees, and we travelled to the lovely town of Glenwood Springs, about an hour downstream of Snowmass. We donned life jackets, had our ‘safety’ training talk (Janine to self, “does my travel insurance cover this?” as I signed the mandatory waiver of death and dismemberment form). Then it was time to throw the rafts into the (what looked like red lava) fast-flowing river. We survived the two-hour rapid ride and thanks to a great (and luckily very fit) boat guide, we

had a great afternoon of fun, laughter, talking and a bit of paddling. The Colorado River was red due to the extended drought they had been suffering. Then, when it rained heavily the day before, washed all the soil into the river. If you ever have the chance to go to Colorado, you must go white-water rafting … heaps of fun!

That’s me three from the front with no sunglasses on!

Day three: Childhood obesity The growing prevalence of obesity in childhood was discussed as a grave problem that required national attention. We see it here in our liver clinic at an alarming rate – young, overweight children presenting with lethargy and elevated liver function tests (LFT’s). Our mantra to the children and their parents is simple to say but maybe hard to execute for some…move more … eat less. Unfortunately, the trend of obesity is predicted to worsen and non-alcoholic fatty liver disease (NAFLD) prevalence will increase as an indication for liver transplantation. It is also associated with an increased risk of development of hepatocellular carcinoma. Management of NAFLD is complicated, as it requires the patient and their family to change their behaviour in order for weight loss and exercise to be adequately incorporated in their life. Studies have demonstrated that intensive lifestyle modification will improve LFTs and liver histology (steatosis) in children with NAFLD. This should be front-line treatment, before other dramatic alternatives such as bariatric surgery is engaged. Of course healthy eating can be expensive – it is cheaper to buy six litres of ice cream than it is to buy 900 grams of yoghurt and this impacts on financially struggling families. A recent review of obesity rates in children on a US state basis demonstrated the poorer state of Mississippi had 34% of children who were obese compared with 21% in Colorado – a more affluent state. This is reflected in Australia with healthier children more prevalent in affluent areas. Studies have revealed that increased fructose consumption in patients with NAFLD were more likely to have fibrotic changes in their liver that would progress to liver cirrhosis. Roundtable discussions were passionate about the need for governmental changes in food regulations, in order to avoid the long-term ramifications that obesity will bring to health

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care systems. As overweight children age, they grow into obese adults, which will impact at a transplantation level for my adult colleagues. Liver transplantation for non-alcoholic steatotic hepatitis (NASH) in the USA in 2001 was 1.2% – this has increased to 9.7% by 2009. Undoubtedly, we will follow suit. Clearly this preventable epidemic will have an impact on our practices in the coming 20 years. Whilst BA is the most common cause of liver disease in paediatrics and is the bulk of our cohort, there are other diseases with smaller cohorts. For example, we have 10 children with Wilson’s disease – this highlights the importance of making connections with other units nationally and internationally in order to improve our practice and provide evidence to international databases. Wilson disease is an autosomal recessive disease occurring in 1 in 30,000 live births – as it is autosomal recessive, most of our cohort is made up of siblings. It is a genetic mutation occurring in ATP7B, resulting in the defective excretion of copper into the bile. The copper builds up initially in the liver, resulting in hepatocyte damage, ranging from inflammation through to cirrhosis. Other rare liver diseases such as respiratory chain disorders and alpha one antitrypsin deficiency disorders were discussed and the emphasis, again, was on multi-centre data collection to improve treatment and outcomes for these children. I spent the afternoon catching a cable car up to the top of Snowmass Mountain with some of the lovely nurses; they do mountains very well in Colorado – the views are breathtaking. It was then time to head off to the big town rodeo. This is an experience you should attend – just for all the American cowboy hype; I even sang the national anthem! I met an old friend of John Denver who used to sing with him. He was singing to all the tables and I couldn’t resist requesting “Take me home country road” to be sung at our table. It was fun and made me a little homesick. That’s John Denver’s friend in the cowboy hat serenading our table.

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Day four: Acute liver failure Acute liver failure (ALF) – in paediatrics 50% will recover, 30% will need liver transplantation and 20% will die before, or will be ineligible for transplantation. Paediatric liver transplantation for ALF occurs in approximately 10–12% of all cases, so for our unit this is 1–2 children each year … again small numbers, and thus the utilisation of data and information from a large cohort of registries such as the one in North America is extremely important for our knowledge and practice. The database is known as the Paediatric Acute Liver Failure (PALF) Study – they collect, maintain, analyse and report clinical, epidemiological and outcome data in children with ALF. They are involved in clinical trials such as the double-blind, placebo-controlled trial using N-acetylL-cysteine (NAC ) for ALF not caused by paracetamol, which found that NAC did not improve their outcome. Thus, central base of knowledge provides important evidence-based data to guide practice, in what otherwise (due to small numbers) would be impossible to conclude. The data will form the basis 27

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for centre practice guidelines for the treatment of PALF and will improve patient outcomes, by their provision of criteria for early diagnosis and referral to specialised centres. This improvement in diagnosis and referral will allow children to receive specific supportive treatment with the option of liver transplantation if required. Post-transplant lymphoproliferative disease (PTLD) was next and it was interesting to compare the higher North American incidence of PTLD to our low rates of PTLD (3 cases out of 268 transplants). We feel this low incidence of PTLD is attributable to the lower dosages of immune suppression that we prescribe. PTLD has associated risk factors such as: a primary Epstein-Barr virus (EBV) infection possibly acquired during high-dosage immunosuppression and the use of monoclonal antibodies, that is OKT3. As the PALF study provides data to improve outcomes in ALF, the North American teams have another study group named SPLIT (Studies in Paediatric Liver Transplantation) and to demonstrate the importance and implication of such a study, the number of children enrolled is close to 3000 from 45 different centres. SPLIT has analysed data on the incidence of PTLD (1995–2008) – during the 1990s PTLD occurred in 20% of children post-liver transplant – this percentage has been reduced by the collection of data that has identified the risk factors contributing to PTLD. SPILT has also analysed risk factors associated with EBV and PTLD and, therefore, they have been able to identify the average time interval from OLTx to PTLD as 11.5 months. This scenario became close to home as the week after I returned from the conference, a three-year-old patient of ours (two years post-OLTx), was diagnosed with PTLD and required chemotherapy treatment. 1 pm rolled around again and I donned my summer hat and jumped on a bus into Aspen for the afternoon for a shop and a look for any celebrities. However, there were none to be found. I did find the only bear I had wanted to find … made of steel and standing still! (I had my strategy worked out if I was in danger of confronting a bear in the street.) Again, I enjoyed the evening with the lovely nurses, eating, drinking wine and laughing.

Day 5 … last day Great talks – including living donor liver transplantation, acute and chronic rejection and immunosuppression. There was a particularly interesting study into immunosuppression withdrawal in paediatric recipients of living, related (parental) liver transplants. This involved 20 patients (at least four years post-transplant) who were prescribed gradual weaning of their immunosuppression dosage over three years. The study demonstrates 60% of children are operationally tolerant. The next interesting speaker was a woman who had received a liver transplant as a 13-year-old for ALF. She is now a medical intern at the Cincinnati Children’s Hospital – her perspective on what it was like to be a well child then requiring urgent liver transplantation was insightful. I attended and enjoyed every session of this conference – it was a fabulous opportunity to meet other paediatric liver nurses and specialists and hear about their service and practice. These connections that are made during the conference are vital in the specialised world of paediatric liver disease and transplantation, as they provide an opportunity to share knowledge, information and experience which can improve and optimise patient outcomes.

With Dr William Balistreri and Becky (Cincinnati CNC)

s 28

Aspen trees

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Australasian Transplant Coordinators’ Association (ATCA) Paul Robertson • ATCA President The ATCA AGM and annual conference is to be held 23–26 June 2013. Please distribute the conference details as widely as possible to your colleagues. This year’s meeting is being organised by NSW/ACT. The theme is Improving practice to complete the picture. Please consider submitting your abstract/poster presentations on this theme. I would encourage as many people as possible to attend this meeting. Apart from the exceptional invited speakers, it is an invaluable opportunity to meet new colleagues and catch up with those you have not seen for a while. I wish you a warm welcome to Canberra in June. (I imagine it will be cold though.) Perhaps the biggest change to coordination practice in Australasia will be the introduction of the Electronic Donor Record (EDR). The development of the EDR has been in process and is reaching an exciting phase. A number of ATCA members, from both donor and recipient areas, have been involved in the development and fine-tuning of this process in conjunction with the Authority. It is a very exciting time and I am sure that the annual conference will give us all further opportunities to discuss this and have an opportunity to discover the wide-ranging aspects of the EDR.

At this year’s AGM we will need to elect three new positions to the Executive. The Treasurer, Secretary and one Councillor position will become vacant. I would encourage all members to consider running for election. It is only with your input that we can continue to have a role in influencing the national perspective on organ donation and transplantation. The broader the roles that make up the Executive the better. We need diverse roles and geographic representation. On the same note, we will bid farewell (at least in the short term) to two members of the Executive (Nicola and Paula) who will be departing on maternity leave. This will leave a casual vacancy for a few months prior to the AGM that we will need to fill. A separate call for nominations will be issued. If you are considering nomination for these positions at the AGM, it would be a great time to consider also filling the casual vacancy of Treasurer and Councillor. I look forward to meeting with you all at the AGM on Sunday 23 June, in Canberra Regards and best wishes, Paul Robertson ATCA President

LIBRARY/INSTITUTE SUBSCRIPTION Twelve-month subscription (three editions per year: March, July and December)

A$110.00 (within Australia)

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Fees payable annually on 31 March

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Box M94, PO Missenden Road, Camperdown, NSW 2050, Australia

Volume 23 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

DIAR Y DATES 2 0 1 3 – 2 0 1 4 For more information, check out the links on the TNA website http://www.tna.asn.au 2013 24–27 April 2013 ISHLT – The International Society for Heart & Lung Transplantation 33rd Annual Meeting and Scientific Sessions

13–16 July 2013 International Paediatric Transplant Association(IPTA ) 7th Congress on Pediatric Transplantation “Building Bridges” Warsaw, Poland 21–23 September 2013

Palais des Congrés de Montréal Montreal, Quebec, Canada

ITNS 22nd Annual Symposium Washington DC, USA

18–23 May 2013

Website: www.itns.org

American Transplant Congress

24–27 September 2013

Seattle, Washington, USA

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

Website: www.a-s-t.org 12–15 June 2013 International Liver Transplantation Society (ILTS)

Monterey, CA, USA 23–25 October 2013 Transplant Nurses’ Association National Conference

19th Annual International Congress Sydney Convention & Exhibition Centre Sydney, NSW, Australia

“Complexities of Transplantation: Building Knowledge & expertise”

26–28 June 2013

2014

2013 TSANZ Annual Scientific Meeting

9–12 April 2014 ISHLT – The International Society for Heart & Lung Transplantation

Dockside Venue – Darling Harbour, NSW, Australia

Manning Clark Centre on the ANU Campus, Canberra, ACT, Australia

34th Annual Meeting and Scientific Sessions

26–29 June 2013 XIII International Small Bowel Transplant Symposium (ISBTS 2013)

Manchester Grand San Diego, CA, USA 26–31 July 2014

Oxford, UK

World Transplant Congress

Website: www.isbts2013.org

San Francisco, CA, USA

STATE EXECUTIVE NSW/ACT

SA/NT

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

President

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

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

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

nicole.williams2@health.sa.gov.au

(08) 8204 5819

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

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

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

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

Volume 22 Number 1 – March 2013

TRANSPLANT JOURNAL OF AUSTRALASIA

JOIN THE EDITORIAL BOARD OF THE TJA Previous editorial experience is not essential The TJA Editorial Board has positions available for new members with renal, pancreas or tissue experience. Being part of the Editorial Board involves working with a dynamic team that aims to provide a relevant and informative journal in organ and tissue donation and transplantation. • Use your knowledge in clinical aspects of transplantation. • Improve your editing and critiquing skills. • Get to know other specialist transplant nurses around Australia. • Be up to date with what’s going on in donation and transplantation in Australia and internationally. The Editorial Board members will provide ongoing support and mentoring where required. The Editorial Board meets via teleconference three times each year prior to each publication of the TJA. However, much communication between members is via email. All expressions of interest are welcome. Please contact Libby John (National Secretary) for any enquiries regarding the TJA positions. Email secretary@tna.asn.au Phone (08) 8204 5819

EDITORIAL BOARD The following people are members of the Transplant Journal of Australasia Editorial Committee • Carrie Alvaro Donor Coordinator

ATCA Representative

NSW

carrie.alvaro@sesiahs.health.nsw.gov.au

Member

NSW

mharkess@stvincents.com.au

Member

VIC

tracey.hughes@austin.org.au

• Michelle Harkess Heart/Lung Transplant • Tracey Hughes Liver Transplant • Tracey Mackay Organ Donation Editor

VIC tracey.mackay@mh.org.au

• Nick Nuttall Eye Bank

Member

QLD

nichalas_nuttall@health.qld.gov.au

Member

catherine.o’driscoll@health.wa.gov.au

Member

NSW

myra.sgorbini@sswahs.nsw.gov.au

Member

VIC

rosemary.snell@bigpond.com

TNA Secretariat

secretariat@tna.asn.au

• Catherine O’Driscoll CNC, Surgery • Myra Sgorbini Donor Coordinator • Rose Snell Heart/Lung Transplant • Nicole Williams Secretariat

Volume 22 Number 1 – March 2013

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

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

Goals

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

Activities

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

Benefits

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

Membership

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

Fees:

1 year membership $66 ■ ■ 2 year membership $120 Fees include 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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