Volume 24 No 2 July 2015 by WorldWeb Group

Transplant Journal of Australasia Volume 24 No 2 July 2015

“Declare the past, diagnose the present, foretell the future.” — Hippocrates O f f i c i a l j o u r n a l o f t h e Tr a n s p l a n t N u r s e s ’ A s s o c i a t i o n I n c .

Have you had the chat that saves lives?

I have! Now my family knows Iâ&#x20AC;&#x2122;d like to be an organ and tissue donor.

Make time to have the chat that saves lives. Ask and know your loved onesâ&#x20AC;&#x2122; organ and tissue donation decision.

Discover the facts. Decide and register on the Australian Organ Donor Register. Most importantly, Discuss your donation decision with loved ones.

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TRANSPLANT JOURNAL OF AUSTRALASIA

CO NTE NTS Journal of the Transplant Nurses’ Association Inc. NATIONAL EXECUTIVE President Christine Ellis Tel: (03) 9076 2823 Fax: (03) 9076 3494 Email: president@tna.asn.au Secretary Elaine Kennedy Tel: (03) 9494 3441 Fax: (03) 9594 6517 Email: secretary@tna.asn.au

TNA National Executive report

Editorial 3 Guest editorial

Challenges facing children on the liver transplant waiting list in Australia and New Zealand Dr Michael Stormon

In the News . . .

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

New therapies to reduce transplant waiting list numbers?

Treasurer Julie Pavlovic Tel: (03) 9496 3424 Fax: (03) 9496 6844 Email: treasurer@tna.asn.au

Previously unresectable intra-abdominal tumours encasing the superior mesenteric artery — a new surgical approach

Editor Libby John Tel: (08) 8204 5819 Fax: (08) 8204 6959 Email: TJAeditor@tna.asn.au ISSN 1323-5109 Published by the Transplant Nurses’ Association Inc. All correspondence to: Shoma Mittra, TNA Secretariat

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

Articles 16

Monica L Velasco and Sukumarn S Mingviriya

Nursing students’ attitudes towards brain death and organ transplantation in southeast Iran

Hassan Eslami and Batool Tirgari

Supporting transplant recipients’ correspondence to donor families

Eva Mehakovic and Amanda Bell

Editorial Board

Diary dates

State Executive

Transplant Nurses’ Association website:

www.tna.asn.au

JOURNAL SUBMISSION DETAILS FOR 2 0 1 5 For 2015 the Transplant Journal of Australasia (TJA) will be produced in March, July and December. Papers are submitted to the Editorial Board, which provides feedback to the author prior to publishing. All papers will be sub-edited to journal style before publication — please refer to the Guidelines for Authors for more details on this and for detailed submission information.

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TRANSPLANT JOURNAL OF AUSTRALASIA

T N A N AT I O N A L E X E C U T I V E R E P O R T Many of you will have seen and heard in the media that AOTA is about to undergo a Government review. TNA has written to the The National Executive has been busy sourcing Australian Government in support of the work a national conference organiser (NCO) — AOTA has done addressing our organ donation companies have been short-listed and interviews rates and for AOTA’s support of the transplant have been undertaken — an announcement sector. You all should have received a copy of will be made shortly to let you know who the the letter that was sent on TNA’s behalf. AOTA successful applicant is. continues to work tirelessly for the organ and On the topic of conferences, remember to get your tissue donation and transplantation sector. TNA registrations in and an abstract/poster for the Julie Pavlovic has been invited to attend a review meeting in Queensland national conference, Transplantation July with a number of other experts in the organ in the Tropics: Cruising the Reef and Navigating and tissue donation and transplantation field. New Ways, being held 21–23 October 2015 in Cairns. The We welcome Elaine Kennedy to the role of National programme looks great. This year at the conference AGM, Secretary. Elaine is the Renal/Pancreas (recipient) Transplant it will be time to elect the position of President Elect. Please Coordinator at Monash Medical Centre (Southern Health), nominate someone you think would be great as our future president. If you are thinking that you would make a great she brings with her a vast amount of experience in the President Elect or want to know more about the position, transplant sector. She was also very active on the Victorian/ feel free to talk to the National Executive or any of your Tasmanian state executive, holding the position of Secretary state branch executives. If the National Executive scares for a number of years. Welcome aboard Elaine. you, consider nominating for a state executive position in In this new, tech-savvy world that we live in, the likes of the upcoming state AGMs. It may look scary but it is a lot Facebook is everywhere. You can’t escape technology, even if of fun and you learn how the TNA works. You also make a you try! Believe me, I have tried and have finally succumbed lot of friends along the way. It isn’t as daunting as it looks to the digital age — I joined Facebook. Yes, I know, those or sounds, and it looks good on your CV! Elaine, our new that know me were shocked, but I am happy to report that National Secretary has developed job description ‘packs’ I am still alive and none the worse for wear as a result. But for state executives to guide them on what their roles entail; seriously, for all of you out there that haven’t joined, TNA has thanks Elaine. These packs offer guidelines for the new its own Facebook page. Join it and “Like” TNA. Claire West executive as well as the old, so that you are not flying by is our Social Media Officer — if your state branch has an the seat of your pants! As always, the National Executive is education day or evening, please send it to both Elaine and always happy to lend a hand or guide new members in any Shoma, so they can upload it on the TNA website and Claire, way they can. so she can post it on Facebook. We have engaged Aussie Internet, a Melbourne company to redesign a new TNA website, that is more functional and The TNA National Executive continues to represent members user-friendly. The URL will stay the same but the design and on various transplantation boards, advisory groups and layout of the website will be transformed. We hope that the reference organisations and will continue to update you all website will be functional by the time membership renewal is with information from these groups. Make sure you continue due this year. We look forward to a bright, new and updated to access the TNA website and Facebook page. website for the future. We will alert all members prior to the Finally, thank you to all our members for your commitment website going live. to the TNA. It is great to see new members at the national Undertaking all these new initiatives wouldn’t be possible conferences and new faces at the state education sessions. without our sponsors. Please continue to promote TNA in your work areas. To our Gold sponsor Novartis, thank you for continuing Just a reminder, get your registrations in for the 2015 national to support the TNA. Thank you also for the additional TNA conference in Cairns and think about submitting an sponsorship of the Transplant Library and for providing abstract or poster. I look forward to seeing many of you in scholarship funds. Members, remember that funding through Cairns later this year. TNA memberships are due at the end scholarships is available through the TNA. Two rounds of of August. Please renew your membership promptly and scholarships are held each year. See the website or journal encourage your colleagues to join to expand our membership for information. and expertise. To our Silver sponsor AOTA, thank you for continuing to Julie Pavlovic support the TNA and continuing our important collaboration between the donation and transplant sectors. TNA National Treasurer I can’t believe that we are already halfway through this year! Time goes so fast.

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EDITORIAL The Australian War Memorial has many records I write this editorial while reflecting on two and stories of the care and courage shown by significant occasions recently observed in Australian and New Zealand nurses. One such Australia and around the world: ANZAC Day nurse is Matron Grace Wilson. She served with the on 25 April, and International Nurses’ Day on Australian Army Nursing Service at 3 Australian 12 May. Both these days marked significant General Hospital in West Mudros and Lemnos, events in our history and are intrinsically linked. Greece and at Abbeville, France during the First ANZAC (Australian and New Zealand Army World War. Matron Wilson kept a diary of her time Corps) centenary commemorations were held in spent in the Army Nursing Service, and describes many parts of the world, including Australia, New caring for the wounded and dying during the Zealand, The Gallipoli Peninsula and France. Libby John Gallipoli campaign in 1915 and the lack of basic ANZAC Day, for some, may be considered just hospital essentials they had, even water2: another public holiday; however, this year, 100 years after the fateful ANZAC campaign, public awareness of 9 August — Found 150 patients lying on the ground — no the sacrifices made by so many men and women at that time equipment whatever … had no water to drink or wash. is particularly high. I was certainly reminded of the extreme and too often tragic consequences of war. In particular, I 10 August — Still no water … convoy arrived at night and found myself reflecting on the conditions and circumstances used up all our private things, soap etc., tore up clothes [for the military health personnel would have experienced for bandages]. many months, even years, during the First World War. It 11 August — Convoy arrived — about 400 — no equipment is difficult to comprehend the conditions they endured and whatever … Just laid the men on the ground and gave them the injuries and sickness they managed, with limited and a drink. Very many badly shattered, nearly all stretcher primitive resources. Unsterile, unhygienic conditions, erratic cases … Tents were erected over them as quickly as possible supplies of medications and medical and surgical equipment, … All we can do is feed them and dress their wounds … A exposure to highly contagious infections, the frequent and good many died … It is just too awful — one could never senseless death of young soldiers, and often caring for describe the scenes — could only wish all I knew to be killed patients with bombs from air strikes falling around them. outright3. It is difficult to comprehend how nurses continued to care for patients efficiently in such chaos — in this current day For many, experiences such as this could have the potential and age the computer system going down for a few hours is to deter them from pursuing a career in nursing; however, considered a critical incident! for many it cemented the professional commitment that they

Figure 1 1

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had made and the value of the nursing skills they had gained. Sister Jessie Tomlins, a civilian nurse who volunteered for active service during the First World War said: “I have never regretted that I took the notion into my head to take on nursing, for it has opened up opportunities that I would never have had”3. These sentiments were particularly relevant as we recognised International Nurses’ Day this May, 100 years on from the ANZAC campaign. International Nurses’ Day celebrates the birth of Florence Nightingale, who was considered to have laid the foundation for nursing as a profession. The many principles of nursing (both learned and innate), which Nightingale formalised back in the 19th century, were utilised by the ANZAC nurses and indeed by all nurses working in a vast array of specialities to this day. The principles of patient advocacy, clinical assessment, problem solving and adapting to situations while striving to provide the highest possible standard of patient-centred care are infinitely relevant across all ages. International Nurses’ Day also recognises and acknowledges the care and commitment that nurses give to those they care for. In 2015 we work in an incredibly advanced and privileged clinical environment. As nurses and health professionals working in the field of organ and tissue donation and transplantation, we face different challenges to the ANZAC nurses; however, we are also required to give

that “bit extra”. We do this because we are dedicated and committed to seeing transplant recipients’ lives transformed. Australian author Tom Keneally has written a book The Daughters of Mars, which tells the tale of two sisters and their service as nurses in the Australian Army during the First World War. I met Tom Keneally last year and on learning that I was a nurse, he inscribed the following in the front of my copy of his book “To Libby the nurse, enjoy this tale of valiant women, nursing — a blessed profession”. A statement that is simple and true. Nurses make sacrifices every day to ensure their patients get the best possible care. While missing out on a proper lunch break or finishing work a little late is annoying, we should all remember occasionally that these small sacrifices seem trivial when thinking about the conditions many nurses bravely faced one hundred years ago. We should be proud of the tradition of caring we are part of — nursing truly is a noble profession that has made a difference to so many lives through many generations. Belated happy International Nurses’ Day to you all.

References 1. New South Wales Nurses’ and Midwives’ Association. Nurse Uncut. http://www.nurseuncut.com.au/anzac-day-contestanzac-girls-and-testament-of-youth/ Accessed May 2015. 2. Australian War Memorial. https://www.awm.gov.au/collection/ PR01870/ Accessed May 2015. 3. Gallipoli and the Anzacs. http://www.gallipoli.gov.au/nurses-atgallipoli/nurses-experience.php Accessed May 2015.

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GUEST EDITORIAL

Challenges facing children on the liver transplant waiting list in Australia and New Zealand Dr Michael Stormon • MBBS, FRACP Senior Staff Specialist, Liver Transplant Unit Children’s Hospital Westmead, Australian National Liver Transplant Unit, Sydney, NSW, Australia

It is well documented that Australia has one of the lowest

cholestatic syndromes and structural liver diseases. Around

organ donation rates in the Western world . Children have

10% of paediatric liver transplants each year are urgently

been receiving liver transplants in Australia since 1985,

performed because of acute liver failure in a previously

accounting for approximately 20% of the total number of liver

healthy, normal child. An increasing number of children are

transplants performed. Although children represent an even

being transplanted for inborn errors of metabolism, where the

smaller proportion overall of those on organ donor waiting

liver itself is healthy but there is a missing specific enzyme,

lists in Australia, they face significant health issues and

resulting in significant morbidity and mortality, particularly

difficulties. This article explores some of these challenges.

in conditions such as the urea cycle disorders. Figure 1

As the old adage goes, “a child is not a small adult”

demonstrates the indications for paediatric liver transplant.

and this is never more true when comparing adults and

In contrast, adult patients requiring liver transplant suffer

children awaiting liver transplantation. One first and obvious

largely from a number of acquired diseases (Figure 2).

difference is the type of diseases requiring transplantation;

Chronic viral hepatitis, in particular Hepatitis C, but also

children usually have inherited or genetic diseases, in

Hepatitis B, plus alcoholic liver disease result in cirrhotic

particular biliary atresia, which is responsible for at least

liver disease, many of whom also develop hepatocellular

50% of paediatric liver transplants around the world. There

carcinoma. Autoimmune liver diseases (sclerosing cholangitis,

is also a potpourri of individually uncommon or rare

autoimmune hepatitis, primary biliary cirrhosis) may also

Figure 1: Primary diseases of children requiring liver transplantation 7 Figure 1. Primary diseases of children requiring liver transplantation7 Volume 24 Number 2 – July 2015

TRANSPLANT JOURNAL OF AUSTRALASIA

require liver transplantation. Increasingly, adult patients with

lists, not all donors are suitable for this, especially in the

end-stage liver disease due to non-alcoholic steatohepatitis

current environment of increasing donor age and rates of

(NASH or “fatty liver disease”) are being transplanted,

obesity. In addition, at times adult patients are deemed

with expectations that this indication will soon overtake

unsuitable to receive a split graft, either because they are

Hepatitis C as the commonest indication for adult liver

“too sick” or are being retransplanted where a whole graft is

transplantation . Around 10 % of adults are also transplanted

preferable. Unfortunately, children do not have this luxury as

for acute liver failure, which often occurs in the setting of

often the only graft available is a split donor liver. Split grafts

decompensated viral hepatitis B infection.

have been associated with increased complications for both

The exponential rise in liver transplants being performed in adult patients in Australia and New Zealand, compared

adults and children, in particular biliary strictures in children usually due to hepatic arterial ischaemia3.

with the more modest rise in paediatric liver transplants,

Other mechanisms to increase the donor pool includes

is demonstrated in Figure 3. This increasing demand for

the use of extended criteria donors, which mainly occurs

liver transplantation in Australia has not been met by organ

in adult patients, using “marginal donors” that are “old”,

donor rates. Children also face the additional challenge of a

or obese, or have other risk factors such as infection or

lack of size-matched donors, given that there are very few

malignancy. Donation after cardiac death (DCD) is also

children who die and become organ donors. This means

being increasingly employed, primarily for adult patients in

that most donor livers come from adult patients. In the early days of liver transplantation, the resulting “competition” for grafts between adults and children saw children missing out when adults received a whole graft, or adults missing out when adult donor livers were reduced in size to fit the child, with the remainder of the donor liver then discarded. This prompted surgical innovation with split grafts, whereby suitable donor livers were split for both the child (usually left lateral segment) and the adult (right lobe). Although the

splitting of livers has helped to reduce organ donor waiting

whom there has been a small increase in liver transplant activity, but with minimal impact on paediatric transplants. As experience accrues, this may be an area worthy of further consideration for children in selected cases. In addition, in children less than 18 months of age ABO-incompatible grafts have been successfully used, following the initial reports from heart transplant recipients4. Other innovations for children include the use of live donors, first performed successfully in Brisbane, Australia in 19895.

Figure 1. Primary diseases of children requiring liver transplantation7

Figure 2: Primary diseases of adult patients requiring liver transplantation Figure 2. Primary diseases of adult patients requiring liver transplantation7 7

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Living donor liver transplantation (LDLT) is currently used

scores, which for PELD includes bilirubin, INR, albumin

for Australian children in approximately 10–15% of cases,

and growth parameters6; MELD incorporates bilirubin, INR

usually as a “back-up” for when things become desperate.

and serum creatinine. Deciding which donor goes to which

In many parts of the world, LDLT is used as the first choice

recipient is a complex process also involving size (weight),

for transplant with great success; this includes Asia where

blood group and donor issues. Additionally, the availability

there is very little cadaveric donation, but also in centres

of local resources is part of this consideration, especially

such as Toronto, Canada, where at least 50% of paediatric

if splitting is proposed, as usually three surgical teams are

transplants are from live donors. In New Zealand, an even

required (donor, adult and paediatric operations).

lower organ donor rate than in Australia has resulted in approximately 40% of their paediatric transplants coming from live donors. Concerns in this country include risks to the donor which can be life-threatening, although most surgeons agree that removal of the left lateral segment is a relatively safe and straightforward procedure. Other concerns revolve around the relatively rare (<1%) risk of the live donor liver suffering catastrophic primary non-function or hepatic artery thrombosis, which would then necessitate urgent retransplantation from the cadaveric donor pool.

Children in Australia have generally a very low mortality on the waiting list, usually 5% or less compared to adult waiting list mortality of up to 20%7. Low waiting list mortality is clearly a good thing, although perversely this can affect a child’s priority on the waiting list, suggesting that in one sense children are disadvantaged by this allocation system. The low waiting list mortality in children is likely multifactorial but reflects further differences between children and adults with liver disease. Children generally lack co-morbidities seen in the adult population, such as diabetes, renal disease, obesity,

The allocation of donor livers in Australia and around the

cardiac disease, hypertension and cancer. In addition,

world, based primarily on urgency, means that whoever is

children benefit from having at least one, if not two, full-time

the sickest is deemed the next recipient. While there is no

live-in nurses: parents! This enables children to be kept at

perfect scoring system to assess this, algorithms such as

home longer than adults might, avoiding hospital admissions

MELD (Model for End Stage Liver Disease, for adults) and

with all its risks of nosocomial infections. In addition,

PELD (Pediatric End Stage Liver Disease) predict disease

parents administer important nutritional supplementation

severity and the likelihood of dying within three months on

via nasogastric tube feeding and are generally compliant with

the waiting list. A range of factors are used to determine these

medication.

Figure 3: Cumulative numbers of adults and children receiving liver transplants 7 Figure 3. Cumulative numbers of adults and children receiving liver transplants7 Volume 24 Number 2 – July 2015

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One area receiving no consideration in liver transplant

fairness11. The current principle adhered to in many countries

organ allocation policy is the long-term effects on a child’s

is that at the time of listing and allocation, recipients should

neurocognitive development. As transplant programmes

have a greater than 50% probability of survival at five years

have improved outcomes, with current 1-year survival of

post-liver transplant, with a quality of life which is acceptable

95% and 5–10 year survival of 85–90%, attention has turned

to them. These criteria, however, are arbitrary and based

to the long-term neurodevelopmental, academic, social and

on clinical judgement rather than any data or objective

quality of life outcomes for children. Recent publications

assessment12. A recent study from the United Kingdom

have highlighted significant shortfalls in all these areas.

attempted to retrospectively modify this rule to bring closer

Mild to moderate developmental delay was identified in

the number of patients being added to the waiting list and

28% of children 5–7 years post-transplant in the early results

the number being transplanted, in over 5000 adult recipients

of a multicentre, longitudinal study examining cognitive

from the UK database over a 14-year period11. By allowing

function . A range of psychosocial issues have been identified,

a 10% mortality rate on the waiting list while matching the

including post-traumatic stress and school absenteeism9.

number of listings with the number of available donors, they

Clearly although great advances have been achieved in

found that the threshold for 5-year survival increased to at

the surgical, medical, nursing and immunosuppressive

least 74%. While a 5-year survival of 74% is a more realistic

management of children, those surviving can have significant

figure than 50% in modern liver transplantation, to achieve

challenges. Identifying which of the pre-transplant, operative

this figure would mean that patients less likely to survive

or post-transplant factors is responsible is difficult, given

would not be listed for transplant; these included patients

the probable multifactorial insult on the developing brain,

who were non-white, those being retransplanted, those older

though few would argue that the sick, malnourished child

than 54 years and those with hepatocellular carcinoma, all

waiting for transplant with recurrent cholangitis, tube-fed,

of whom have worse outcomes. Clearly, these findings are

in and out of hospital, and not meeting its developmental milestones is at risk of long-term neurodevelopmental issues. In addition, data from animal models has raised concern about adverse long-term neurocognitive outcomes from

unpalatable and won’t be implemented, but do raise the need for alternative strategies apart from the acceptance of higher waiting list mortality.

general anaesthetics given to children less than three years of

More recently there has been criticism of the current MELD/

age, prompting the American Academy of Pediatrics to issue

PELD system as being inefficient, by prioritising livers to

a consensus statement urging further human research into

patients with higher scores who not only have a greater risk

this area, along with the recommendation to avoid elective

of dying pre-transplant, but who are also thought to have

surgery if possible in children of this age10. Given that nearly

worse post-transplant outcomes13. Thus, grafts are being

70% of children require transplantation before the age of

allocated to patients with less potential benefit than others.

three makes this impossible to adhere to.

Schaubel et al.14 proposed a survival benefit-based model,

How to influence the allocation of livers to children from this perspective is very difficult, but clearly some recognition of this issue is needed. Our group at The Children’s Hospital Westmead in Sydney is currently undertaking a prospective study examining neurocognitive outcomes in children postliver transplant and assessing various clinical variables which may be associated with worse results. Extensive psychometric and quality of life testing, as well as MRI neuroimaging, has been performed thus far in a small cohort (n=27) of the proposed 50 children to be evaluated; poorer performance has been identified in areas such as maths, fine motor, working memory and attention, with regression analyses identifying the PELD score at transplant and the time on the waiting list as significant correlates of worse results. Further test results and analysis is pending.

balancing medical need with potential benefit via a somewhat complicated series of Cox regression models, examining both donor and recipient characteristics. This model is thought to balance justice (incorporating equity, medical need and fairness) with utility (maximising the greatest benefit for the greatest number of patients). The Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Liver and Intestinal Organ Transplantation Committee in the United States subsequently considered this model and decided that the current MELD/PELD system did not require modification, apart from reducing geographic disparities in the United States15. In addition, one of the shortfalls as acknowledged by Schaubel et al.14 is that their model fails to prioritise younger patients and does not include quality of life concerns, both of which are vital components in paediatric liver transplantation. Keller13

Organ allocation is ethically complex, with notions of

argues that incorporating factors such as quality of life, with

balancing benefit and utility, in addition to equity, justice and

quality-adjusted life year modelling, as well as weighting

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recipient age differently for different stages of life, can better

One way to assess graft utility is to examine actuarial survival

predict post-transplant outcomes. These are complex ethical

curves (Figure 4), which demonstrate superior results in

arguments beyond the scope of this article, highlighting how

children. Childhood diseases have similar outcomes except

Figure 3. Cwhich umulative numbers nd the children receiving liver twith ransplants (usually difficult it is to have a system benefits everyone.of adults afor very small percentage malignancy

4: Child and adult actuarial survival 7 Figure

Figure 4. Child and adult actuarial survival7

5: Child survival according to disease type 7 Figure

Figure 5. Child survival according to disease type7 Volume 24 Number 2 – July 2015

TRANSPLANT JOURNAL OF AUSTRALASIA

hepatoblastoma, Figure 5). Recurrent disease is uncommon in

cadaveric graft, and would also allow adult patients more

children and rarely an indication for retransplant, compared

access to whole graft livers.

to adults with recurrent Hep C and autoimmune diseases. Other reasons for worse survival in adult patients are the co-morbidities they develop: diabetes, renal dysfunction, metabolic syndrome, cardiac disease and malignancy. In

In summary, liver transplant organ allocation is a complex process in which children face multiple challenges. Low waiting list mortality and excellent survival outcomes belie long-term

addition “disease recurrence” in the form of recidivism after

sequelae such as quality of life, neurodevelopmental and

transplantation for alcoholic liver disease16 is reported to

learning issues. Further consideration of these factors should

occur in about 20%, although recurrent cirrhosis and graft

be incorporated into liver organ allocation for children.

loss is rare (<5%). On the other hand, children who require retransplantation have historically done poorly, especially if they require early urgent (within 30 days) retransplant7. How then should organs be allocated for adults and children awaiting liver transplant? Clearly this is a complex area with multiple uncertainties. Should there be better scrutiny of graft utility, particularly patients with significant co-morbidities who become very sick and thus assume priority for transplant? Should there be an age (which is often a corollary for co-morbidity) and weight cut-off, or is this discriminatory? How can the competing interests of adults (high waiting list mortality) and children (low waiting list mortality, high risk of neurodevelopmental issues) be reconciled? Should children receive some sort of priority, such as occurs in other

References 1. Australian Organ and Tissue Authority. Performance report, 2014. 2. Wong RJ, Aguilar M, Cheung R et al. Nonalcoholic steatohepatitis is the second leading etiology of liver disease among adults awaiting liver transplantation in the United States. Gastroenterology 2015; 148(3):547–55. 3. O’Loughlin EV, Stormon MO, Shun A et al. Biliary strictures and hepatic artery flow abnormalities in split liver transplants. Pediatr Transplant 2010; 14(1):121–5. 4. West LJ, Pollock-Barziv SM, Dipchand AI et al. ABOincompatible heart transplantation in infants. N Engl J Med 2001; 344(11):793–800. 5. Strong RW, Lynch SV, Ong TH, Matsunami H, Koido Y & Balderson GA. Successful liver transplantation from a living donor to her son. N Engl J Med 1990; 322(21):1505–7. 6.

McDiarmid SV, Anand R, Lindblad AS, Principal I & Institutions of the Studies of Pediatric Liver Transplantation Research G. Development of a pediatric end-stage liver disease score to predict poor outcome in children awaiting liver transplantation. Transplantation 2002; 74(2):173–81.

Australian and New Zealand Liver Transplant Registry. Brisbane, QLD, Australia, 2014.

parts of the world where children receive preference for liver transplantation (Toronto, Canada and also in Brazil). For example, in renal transplantation in Australia the risks to children on dialysis were recognised early on and so they were given priority for transplant. If children were prioritised for liver transplant would this be acceptable given that adult patients would then be likely to have a higher mortality on the waiting list? The solutions are not readily available. Obviously increasing organ donor rates is one answer though this remains problematic in Australia, not withstanding the 53% increase in organ donation from 2009 to 2014 following the establishment of the National Organ and Tissue Authority by the Rudd Government1. Personally, I believe that live donor liver transplantation should be performed more routinely for children. The benefits include more timely transplantation, performed in the “cold light of day” in an elective fashion, from a healthy donor with reduced ischaemic time. The outcomes from these transplants performed in New South Wales (n=15 since 2002) have been excellent. There are risks which as a non-surgeon I do appreciate: risks to the donor of dying (extremely rare in adult–child donation) and morbidity (infections, bile leaks, DVT, pain); the often quoted risk of primary non-function or acute hepatic artery thrombosis of the live donor liver is extremely rare. In addition, the overall cost of performing LDLT would be less than waiting for a 10

8. Sorensen LG, Neighbors K, Martz K et al. Cognitive and academic outcomes after pediatric liver transplantation: Functional Outcomes Group (FOG) results. Am J Transplant 2011; 11(2):303–11. 9. Gilmour S, Adkins R, Liddell GA, Jhangri G & Robertson CM. Assessment of psychoeducational outcomes after pediatric liver transplant. Am J Transplant 2009; 9(2):294–300. 10. Rappaport BA, Suresh S, Hertz S, Evers AS & Orser BA. Anesthetic neurotoxicity — clinical implications of animal models. N Engl J Med 2015; 372(9):796–7. 11. Knight M, Barber K, Gimson A, Collett D, Neuberger J & Liver Advisory Group of National Health Service Blood T. Implications of changing the minimal survival benefit in liver transplantation. Liver Transpl 2012; 18(5):549–57. 12. Neuberger J & James O. Guidelines for selection of patients for liver transplantation in the era of donor-organ shortage. Lancet 1999; 354(9190):1636–9. 13. Keller EJ, Kwo PY & Helft PR. Ethical considerations surrounding survival benefit-based liver allocation. Liver Transpl 2014; 20(2):140–6. 14. Schaubel DE, Guidinger MK, Biggins SW et al. Survival benefitbased deceased-donor liver allocation. Am J Transplant 2009; 9(4 Pt 2):970–81. 15. Liver and Intestinal Organ Transplantation Committee. Interim report 2013. http//:optn.transplant.hrsa.gov/CommitteeReports/ interim_main_Liver&IntestinalOrganTransplantationCommitt ee_4_12_2013_14_17.pdf 16. Singal AK, Chaha KS, Rasheed K & Anand BS. Liver transplantation in alcoholic liver disease: current status and controversies. World J Gastroenterol 2013; 19(36):5953–63.

Volume 24 Number 2 – July 2015

TRANSPLANT JOURNAL OF AUSTRALASIA

IN THE NEWS . . .

New therapies to reduce transplant waiting list numbers? Transplantation is now an accepted therapy for many disease processes that cause organ failure. However, while transplantation can be a life-saving procedure, it can also expose the patient to many risks. These include risks related to the transplant surgery as well as the lifelong side effects of immunosuppressive therapy. Another problem facing those requiring transplantation is that demand for donor organs still exceeds supply, resulting in waiting list mortalities. Ultimately, the best outcome for the patient would be reversal or cure of the disease process causing their organ damage, and avoidance of the need for transplantation. Scientists around the world continue to undertake groundbreaking research using stem cell therapies to repair or replace damaged organ tissue. To follow are some news reports on exciting developments in this area.

Repair hope as scientists repair kidney damage By: Lucie Van Den Berg From: Herald Sun 18 March 2015 Melbourne scientists have used a new combination treatment to reverse kidney damage in what is a world first. The advance raises hopes of a treatment that could one day reduce the need for dialysis or kidney transplantation. A Monash University team reversed kidney scarring in mice by using a combination of stem cell therapy and a man-made version of a protein that is produced during pregnancy. Associate Professor Sharon Ricardo said the ageing population and an increase in type 2 diabetes had contributed to a surge in kidney disease. Professor Ricardo continued: The only option for patients when they develop chronic kidney disease, and their kidneys are very scarred, is dialysis or transplantation. She said one of the most promising treatment areas in human trials was stem cell therapy, but it was not as effective in patients with badly scarred kidneys. Her colleague, Associate Professor Chrishan Samuel, said the kidney had a natural capacity to heal, but not when there was chronic damage. He said: As the scar tissue begins being laid down it stops the kidney from functioning normally. At the same time the scarring forms a barrier for introduced stem cells … and they die off quite quickly.

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The team combined the stem cell therapy with serelaxin, a synthetic version of the protein relaxin. They found this reduced scarring, allowing stem cells to begin repairs. “We have shown for the first time that we can reverse the scarring in kidney disease,” Professor Ricardo said. Professor Samuel explained that the ultimate aim of the research was to provide an alternative to transplantation and dialysis. He continued: Because both stem cells and relaxin are both in clinical trials, I think it’s quite feasible that the combination therapy could be evaluated in clinical trials in humans quite quickly.

Rebooting cell programming can reverse liver failure By: Anita Srikameswaran From: UPMC/University of Pittsburgh Schools of the Health Sciences 16 March 2015 It might be possible to heal cirrhotic liver disease by rebooting the genes that control liver cell function, according to researchers at Children’s Hospital of Pittsburgh of UPMC and the University of Pittsburgh School of Medicine. If validated in human studies, the game-changing strategy, described in the online version of the Journal of Clinical Investigation, could potentially treat patients who are too sick for liver transplantation and, in the future, reduce the need for transplants. The project grew out of the observation that not everyone who develops cirrhosis, or scarring of the liver, progresses to liver failure and its life threatening complications, explained Ira Fox, MD, professor of surgery, Pitt School of Medicine, and director of the Center for Innovative Regenerative Therapies at Children’s Hospital and the McGowan Institute for Regenerative Medicine. Dr Fox said: Even with the large amount of scar tissue that comes with cirrhosis, there should be enough cells left to carry out the normal functions of the liver. So when the liver fails, it is the liver cells themselves that aren’t working properly. In this study, we demonstrate what has caused the problem, and more importantly, a way to repair it. His team developed a rat model of liver disease that mimics the form of human cirrhosis that progresses to organ failure. In previous work, they found that liver cells taken from animals with cirrhosis, but no liver failure, immediately functioned properly when transplanted into another animal. But cells transplanted from animals with both cirrhosis and

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liver failure did not function normally at first, indicating that

John M Canty Jr., MD, Albert and Elizabeth Rekate Professor,

both the liver cells and the liver tissue environment were

chief of cardiology in the UB Department of Medicine and a

damaged.

cardiologist with UBMD said:

The researchers then compared the genes in the liver cells

We’re trying to find out whether one of the cell types —

of the two groups of cirrhotic rats and found unusually low

either cardiosphere-derived cells (CDCs), which come from

activity levels of the genes that control proteins which play a

donors, or cardiac stem cells (CSCs) from the patient — are

central role in liver cell function, the most important being a

more effective when infused into the coronary arteries.

factor called HNF4. In the new paper, they showed that restoring production of HNF4 by gene therapy reboots the liver cells to normal function. The team first showed this in lab tests and then in rats with liver failure. Dr Fox continued: We were pleased to see that the animals got better almost immediately. Remarkably, our tests indicated that it wasn’t stem cells, regeneration or growth of new liver cells that caused improvement. Instead, the diseased cells had healed. It seems that in at least some forms of cirrhosis,

Canty explained that CSCs reside in the heart and some researchers hypothesise that they are the source of new cardiac muscle cells. They normally divide slowly, but when selectively harvested from a patient, they can be increased in number and then infused back into the recipient’s heart. He continued: After injection, the new cardiac stem cells proliferate and are the source of new heart muscle cells. With this approach, only cells from the same patient can be used.

chronic injury reprograms the liver cells to shut down

Another approach is to take tissue from heart biopsies, which

HNF4 production, a dysfunction that eventually causes

can grow into multicellular CDCs. Even though they do not

liver failure.

develop into new muscle cells themselves, these cells can

HNF4 gene therapy provided unique insight into the cause of liver failure and has significant potential for human therapy, but the investigators are now looking for other gene targets

improve cardiac function. Canty and his colleagues previously demonstrated that these CDCs, as well as mesenchymal stem cells isolated from bone marrow, stimulate the recipient’s

to develop simpler therapies, such as drugs that block the

own heart muscle cells to divide again. Canty explained that

pathways that mediate failure. The team also is confirming

this approach makes it potentially feasible to use stem cells

their results with human liver cells.

from an unrelated donor and not the patient. He said:

Can ‘off-the-shelf’ stem cell therapy treat heart failure patients? UB researcher aims to find out By: Ellen Goldbaum From: Medical Xpress 16 March 2015 http://medicalxpress.com/news/2015-03-shelf-stem-celltherapy-heart.html After a heart attack, cardiac stem cell therapy stimulates the growth of new heart cells, but exactly how that happens is unclear. The National Institutes of Health has awarded a $2 million grant to a researcher at the University at Buffalo School of Medicine and Biomedical Sciences to do a preclinical study to find out. The answer will help determine which type of cardiac stem cell therapy will be most effective in treating patients with heart failure.

Using cardiac stem cells that don’t need to be harvested from the recipient would make this type of therapy more widely available to the increasing number of patients in need of treatments for heart failure. Demonstrating the feasibility of using cells from an unrelated donor would also provide an off-the-shelf approach to cardiac stem cell therapy. He added that infusing stem cell formulations directly into coronary arteries delivers the cells throughout the entire heart. This method is much simpler than injecting cells directly into heart muscle, which requires equipment that’s not widely available. If it turns out that harvesting a patient’s own cells is more beneficial, then one approach could be to remove them with a minimally invasive heart biopsy, boost their numbers by

Heart failure occurs when the heart cannot pump enough

culturing them outside of the body and then return them

blood and oxygen to support the body’s organs. According

to the patient. While conceding that this method is time-

to the Centers for Disease Control and Prevention, it affects

consuming, Canty and his colleagues already have done

more than 5 million people in the US, with half of them dying

this in preclinical studies. The method also is being used in

within five years of diagnosis.

clinical trials of other types of therapies.

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New hope for short bowel syndrome: scientists make a fully functional small intestine

a patient’s own cells, avoiding the immune complications

By: Maggie Kuo From: The American Physiological Society Press Release 4 May 2015

isolating intestinal cells from a portion of a donor’s intestine

Researchers at Children’s Hospital Los Angeles have successfully made a small intestine that has the structural and molecular components of a healthy intestine.

developed around the tube and formed a new intestine

Short bowel syndrome (SBS) is a gastrointestinal disorder that occurs when the small intestine — where fluid and nutrients are absorbed from food into the body — is damaged, such as from genetic disorders or surgery, and has to be removed. As a result, the body does not get enough fluid and nutrients and becomes malnourished. Patients with SBS must receive nutrient supplements through an IV to stay healthy, which can disrupt their lives. With the number of cases of SBS on the rise in both children and adults, intestine transplantation offers a permanent solution but is limited because of a shortage of donors and it requires patients to rely on drugs to suppress their immune system and avoid organ rejection.

segment had the general features of a small intestine, and in

Tissue-engineered small intestine (TESI) is a promising alternative to transplantation because it would not be limited by supply. Moreover, TESI can potentially be generated from

intestine both demonstrate digestive and absorptive function”

of transplantation. Led by Tracy C Grikscheit, the research team had previously developed a process to create TESI by and placing the cells onto biodegradable tubes. The cellloaded tubes were then implanted into mice where the cells segment. The researchers had observed that their engineered intestine this new study, demonstrated that it also has the structural details and molecular parts to function like one. The intestinal cell types in the TESI were oriented correctly and possessed the proteins involved in breaking down food and absorbing water and nutrients. Similar to a natural intestine, the TESI also had the inner lining critical for maximising fluid and nutrient absorption and the fluid-tight junctions between cells that prevent the intestine’s contents from leaking out. The article “Human and mouse tissue-engineered small is published in the American Journal of Physiology — Gastrointestinal and Liver Physiology.

Editorial Board Libby John

Editor

TJAeditor@tna.asn.au

Tracey Mackay

Member

VIC

tmac2099@bigpond.net.au

Member

NSW

mharkess@stvincents.com.au

Member

VIC

tracey.hughes@austin.org.au

Member

QLD

bronwynhayes@aapt.net.au

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

tracy.mcconnell-henry@monash.edu

Secretariat

secretariat@tna.asn.au

Member

Bruce.Maguire@health.wa.gov.au

Member

Turkey

yapraksarigol@gmail.com

Michelle Harkess Heart/Lung Transplant Tracey Hughes Liver Transplant Bronwyn Hayes Renal transplant Nick Nuttall Eye Bank Catherine O’Driscoll CNC, Surgery Myra Sgorbini Donor Coordinator Tracy McConnell Henry (previous) Nurse Donation Specialist Shoma Mittra TNA Secretariat Bruce Maguire Social work Yaprak Sarigol Liver Transplant

Volume 24 Number 2 – July 2015

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ARTICLE

Previously unresectable intra-abdominal tumours encasing the superior mesenteric artery — a new surgical approach Monica L Velasco • FNP-C, MSN Sukumarn S Mingviriya • MSHS, PA-C Intestinal/Ex Vivo Transplant Division, Columbia University College of Physicians & Surgeons Center for Liver Disease and Abdominal Organ Transplantation, NY, USA

Abstract Ex vivo tumour resection with auto-transplantation is an innovative technique that is useful to treat extensive, otherwise unresectable tumours. This technique can be considered for extensive liver tumours, pancreatic tumours, sarcomas, and other abdominal malignancies whose involvement with major blood vessels or other organs would otherwise cause them to be deemed unresectable. This surgical approach can provide margin-free resections in patients with tumours that involve major vascular pedicles; thus avoiding life-threatening complications associated with conventional surgery. This case illustrates the clinical course and nursing implications of a patient who presented with a small bowel obstruction, and was found to have a high-grade liposarcoma encasing the superior mesenteric artery. Prior to his ex vivo tumour resection with intestinal auto-transplantation, the patient was considered inoperable by two other medical centers. Keywords: Ex vivo, intestinal transplant, auto-transplantation, mesentery tumour, intra-abdominal tumour.

Case description The patient is a 62-year-old male with a history of coronary artery disease, hyperlipidaemia, and prostate cancer s/p high frequency ultrasound nine years prior. He presented to an outside medical centre with small bowel obstruction. A CT-scan of the abdomen and pelvis revealed two large abdominal mass lesions with epicentre within the mesentery. The first mass was located in the lower abdomen/upper pelvis and measured 10.5 x 8.2 x 7.0 cm. The second mass was located in the right anterior mid-abdomen and measured 9.0 x 7.0 x 6.5 cm with a 2.5 cm solid nodule along the left anterior margin. A high-grade distal small bowel obstruction was also confirmed. Of note, 1.7 x 1.6 cm and 1.5 x 1.2 cm hyper-enhancing lesions were present in the right hepatic lobe, both with features consistent with hemangiomas (images not available). The patient underwent exploratory laparotomy the following day, and was found to have a non-obstructing tumour involving the small bowel mesentery, duodenum, and encasing the superior mesentery artery. Given these findings, the surgical team decided the tumour was unresectable without sacrificing the duodenum, the entire small bowel, and portion of the colon. The procedure was aborted after the tumour was sampled in two areas. The pathology confirmed an undifferentiated pleomorphic sarcoma, positive for CPM gene amplification by fluorescence in situ hybridisation, consistent with high-grade dedifferentiated liposarcoma. 16

The patient opted to pursue radiation treatment to shrink the tumour and potentially become a surgical candidate. He received 36 days in total of radiation therapy — 5000 cGy at the edge of the tumour and 6400 cGy at the centre of the tumour. After treatment, the patient was reimaged (Figure 1), and there was minimal interval decrease in the size of the large mesenteric mass measuring 9.7 x 5.9 cm. The second more inferiorly in the mesentery measured 10.5 x 7.9 cm. The patient was then referred out-of-state for a second surgical consult, which also considered the case unresectable. That institution referred the patient to our facility for a third opinion. The patient was seen by our senior transplant surgeon, who offered to resect the tumour by the ex vivo method. Four months after his initial diagnosis, the patient underwent ex vivo tumour resection, with intestinal auto-transplantation. The surgery began with dissecting the small bowel and right colon, isolating the two masses. After the tumour was mobilised, the superior mesenteric artery and vein were isolated and clamped, and the entire specimen was resected and brought to the back table and flushed. The two masses were resected off the specimen along with a portion of the small bowel, while keeping important vasculature for re-anastomosis (Figure 2). Approximately 50 cm of the jejunum and 60 cm of ileum was preserved together with the right hemicolon and the ileocecal valve. The tumour-free specimen was brought back onto the surgical field for artery

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Figure 1a

Figure 1b

Figure 1: Abdominal CT post radiation therapy showing superior mass (1a) and inferior larger mass (1b).

Figure 1a Figure 1. Abdominal CT post radiation mass (1b).

Figure 1b

as needed). Nutritional parameters were provided jointly by transplant NP and nutritionist. The patient followed a therapytheshowing superior mass (1a) and inferior larger restricted diet, which limited his intake of dairy, fatty foods, and concentrated sweets. Foods were introduced gradually, allowing the patient to declare tolerance/intolerance. With our collaborative efforts and close management, the patient did not require any hospitalisation following his resection.

On postoperative week 12, the patient was admitted for elective colostomy closure. Prior to colostomy closure, he had been successfully weaned of his nutritional supplementation and intravenous fluid replacement. The patient was amenable to maintaining his gastric-tube in place for an additional three months, to provide access for hydration due to the risk of developing diarrhoea. One week after his stoma closure, the patient experienced diarrhoea (nine to 12 daily bowel movements). He remained on loperamide Figure 2: Surgical specimen of both tumours, along with and diphenoxylate/atropine, augmented with camphorated small bowel. The larger inferior mass is seen in the bottom. tincture of opium. The patient’s diarrhoea improved, and his The superior mass is directly above covered in mesentery. Figure 2 medical care was transitioned to his local gastroenterologist. Surveillance imaging at three months and six months post and vein anastomosis. Once revascularisation was complete ex vivo resection cal specimen of both tumors, small bowel. inferiorconfirmed mass isthat the patient remained free of and successful, the bowel along had to with be anastomosed to theThe larger recurrence (Figure 3). m. The superior mass is directly above covered in mesentery. patient’s remaining bowel. The duodenum was anastomosed to the jejunum, and the right colon was anastomosed to the left colon in an end-to-side fashion with the left colon exteriorised to a colostomy. The patient recovered well and was discharged on postoperative day 12. He worked closely with the intestinal transplant nurse practitioner (NP) as an outpatient. The patient and his care partner communicated daily with the NP during a three-month period. The patient maintained daily logs, and reported his oral intake, enteral (feeding tube) tolerance, urine output and colostomy output twice daily. The NP would evaluate the information, and would advise on how to proceed with pain management and fluid replacement (by mouth, gastric tube, or intravenously). Due to the elevated colostomy losses, the patient was placed on combination therapy (loperamide and diphenoxylate/atropine

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Nursing Implications With surgical advancements, the role of transplant nurses today continues to evolve. Patients undergoing intestinal resection with auto-transplantation of the residual bowel require close management following surgery. The first three months are a critical period in which patients can succumb to severe dehydration, weight loss, and electrolyte derangement all from markedly elevated gastrointestinal losses. With the exception of immunosuppression use, this cohort of patients behaves similar to intestinal transplant recipients. To avoid unnecessary admission and medical regress, this population needs to work closely with experienced nursing clinicians comfortable with short-bowel syndrome and/or intestinal transplant patients, who require tailored pharmaceutical, hydration and nutritional support. 17

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Figure 3a

Figure 3b

Figure 3: Abdominal CT 6-months post ex vivo tumour resection with auto-transplantation of the bowel; (3a) axial view at the same level as figure 2a; (3b) coronal view showing no tumour recurrence.

Figure 3a

Figure 3b

Conclusion

References

Figure 3. Abdominal CT 6-months post ex-vivo tumor auto-transplantation of the 1. Katoresection T, Lobritto S, with Tzakis A et al. Multivisceral ex vivo surgery Ex vivo resection and auto-transplantation developed for tumors involving celiac and superior mesenteric arteries. Am bowel; (3a) axial view at the same level as figureJ Transplant 2a; (3b)2012; coronal view showing no tumor 12(5):1323–1328. with advance in organ preservation and transplantation 2. Tzakis AG, Tryphonopoulos P, De Faria W et al. Partial recurrence. technique . This surgical approach provides effective surgical 1

resection of tumours otherwise considered unresectable and lessens life-threatening complications from conventional surgery2,3. Skilled nursing care is essential for postoperative management of this highly specialised patient population.

abdominal evisceration, ex vivo resection, and intestinal autotransplantation for the treatment of pathologic lesions of the root of the mesentery. J Am Coll Surg 2003; 197(5):770–776. Nikeghbalian S, Aliakbarian M, Kazemi, K et al. Ex vivo resection and small-bowel auto-transplantation for the treatment of tumors at the root of the mesentery. Int J Organ Transplant Med 2014; 5(3):120–124.

DIARY DATES 2015 For more information, check out the links on the TNA website http://www.tna.asn.au 23–26 August

22–23 October

Asian Society of Transplantation (CAST) Singapore For more information, go to www.cast2015singapore.org

24th Annual TNA Conference Hilton Hotel, Cairns, QLD, Australia For more information, go to: www.tna.asn.au

13–16 September

11–13 November

ESOT 2015 — European Society of Transplantation Brussels, Belgium For more information, go to http://esot2015.esot.org/

13 October 9th International Transplant Infectious Disease Conference Cancun, Mexico For more information, go to www.tid2015.org

The Transplantation Society Basic Science Symposium (TSS/BSS 2015) Lorne, VIC, Australia For more information, go to www.bss2015.org

15–19 November IPITA/IXA/CTS Joint Congress Melbourne, VIC, Australia For more information, go to www.melbourne2015.org

17–20 October 2015 Organ Donation Congress (13th Congress of ISODP) Seoul, Korea For more information, go to www.isodp2015.org

Volume 24 Number 2 – July 2015

Transplant Nurses’ Association

24th Annual Conference Cairns 21 – 23 October 2015

See website for updates

Transplantation in the Tropics: Cruising the Reef and Navigating New Ways

KEY NOTE SPEAKERS Dr Kellee Slater Dr Scott McKenzie Dr Scott Campbell Dr Peter Boyd Dr Enzo Binotto plus more ……………

Enquiries: Conference Secretariat e-Kiddna Event Management Phone: 07 3893 1988 Email: info@e-Kiddna.com.au

Transplant Nurses’ Association

www.tna.asn.au/news-events/tna-conference

https://www.facebook.com/pages/Transplant-Nurses-Association/393014170794711?fref=ts

Hilton Cairns

Tropical North Queensland

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ARTICLE

Nursing students’ attitudes towards brain death and organ transplantation in southeast Iran Hassan Eslami • MSc Department of Medical Emergency, Ferdows Faculty of Health, Birjand University of Medical Science, Birjand, Iran Batool Tirgari • PhD Neuroscience Research Center, Institute of Neuropharmacology, Kerman University of Medical Sciences, Kerman, Iran

Abstract Background: Considering the increase in the number of chronic diseases and the success of organ transplantation as a treatment option, patients that are confirmed brain dead are a valuable source of organs for donation. Nursing students’ attitudes and knowledge regarding brain death and organ transplantation will influence organ donation rates. To the best of our knowledge, there has not been any study conducted to actually assess nursing students’ attitudes towards brain death and organ transplantation in Iran. This study has been conducted to fulfil this aim. Methods: This study employed a descriptive design. Using the Watkinson 1995 questionnaire, which assessed attitudes relating to organ donation and brain death, a census sample consisting of 373 nursing students was undertaken in the Razi School of Nursing and Midwifery, supervised by Kerman University of Medical Sciences. Results: The nursing students’ mean score of attitude towards brain death and organ transplantation was 88.37 ± 10.37. These results reflect that the nursing students had a positive attitude towards brain death and organ transplantation. The “Enhancing quality of life” component had the highest mean score (25.49 ± 3.38). The lowest mean score was attributed to the “Rewarding experience” component (12.32± 2.02). Conclusion: These findings suggest that attitudes towards brain death and organ transplantation can be improved by education. Specific education may influence student nurses’ attitudes towards brain death and organ transplantation. Therefore, education regarding brain death and organ transplantation should be incorporated into nursing education curriculum delivered to undergraduate nursing studies. Keywords: Brain death, organ transplantation, organ donation, attitude.

Introduction

donated organs. More than 50 years ago (1960s), neurologists

One of the most complex topics that puzzle the mind has been death. Throughout the years, the meaning of death has been researched and changed by physicians and neurologists . It 1

is now known, that as well as cardiorespiratory circulation, a healthy brain is necessary for life. When the brain cortex and brain stem cells are destroyed, communication between brain and body are separated, thus brain death has occurred2. In this situation, the whole brain and brainstem activities are irretrievable. Other acute brain dysfunctions like coma and

defined brain death, thus unintentionally discovering a rare resource for the donation of organs. Since this time, organ donation has had rapid growth4. The history of transplantation in Iran began in an ancient age. Iranian physician “Ebnsina” did the first nerve graft about 1000 years ago, and approximately 900 years ago, Jorjani in his book, referred to the substitution of a dog bone with a human bone5.

a vegetative state, where the level of consciousness has

Ninety nine per cent of the Iranian population are Muslim.

changed, are different from brain death. The concept of brain

Islam recognises the special duty of saving a human life. So,

death is perceived differently among people, dependent on

in The Koran (the Muslim holy book), it is identified that each

their attitudes, cultures, education, religion and experiences3.

person who saves another person’s life, is similar to a person

With

the

improvement

surgical

procedures

and

development of immunosuppression, the best treatment option for many patients with end-stage organ failure is organ transplantation. There is a plethora of evidence showing improvement in the patient’s quality of life after receiving 20

who has saved all of mankind. Therefore, each medical treatment procedure will save lives. Organ transplantation is recognised as a life-saving procedure; therefore, it is an important part of the Islamic religion6. Imam Khomeini (founder and supreme leader of the Islamic

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Republic of Iran) gave instruction regarding permission for the retrieval of organs from a cadaver and brain-dead patient in 1990. Iranian health care managers then began efforts to implement this instruction. Finally, in 2001, the law regarding organ donation was approved in the Iranian constitution, provided that families of brain-dead patients’ consent7,8. Contrary to expectations, the rate of organ donation in Iran is low in comparison with other countries. There are 15,000 brain-dead, potential organ donors in Iran due to trauma annually. But only 10% of their families give permission for organ donation9. As a result, the rate of organ donation is only 1.7% per million population (pmp) in Iran. This percentage is very low in relation to the high demand of patients requiring organ transplants10,11. There are two major obstacles that have been identified as influencing organ donation in Iran. The first is the shortage of knowledge and information for families of patients who are confirmed as brain-dead about the process of brain death and the organ donation procedure6,12. Some families find it very difficult to give consent for organ donation, especially Iranian and Asian families5. The second obstacle is religious misinterpretations and cultural attitudes of nurses and physicians regarding organ donation. Intensive care nurses’ attitudes are affected by their knowledge and understanding of the process of brain death and organ procurement. In Iran, religious beliefs are the most influential factor for the withdrawal of treatment and organ donation9. Besser et al. conducted a study titled “Who signs an organ transplant donor card? A study of personality and individual differences in a sample of Israeli university students” and concluded that the taking of a donor card was affected by person’s characteristics, such as knowledge and attitudes13. In a Middle Eastern country like Qatar, the rate of organ donation is low compared to the United States (US) and Europe. One of the most important issues that affects the organ donation rate is public attitude. Factors such as: level of knowledge, education, religion, ethnicity, gender and traditional values influence public attitudes regarding organ donation14. Despite the existence of a transplantation law passed in 2000 and religious and governmental support, Iran continues to have a low rate of organ donation compared to other countries15. In an investigation in 2005, El-Shoubaki et al. showed that 31–39% of the people of Qatar were interested in donating their organs after death, whereas only 15–20% of them were interested in donating an organ when they are still alive14,15. Although there is a shortage of donated organs (about 17% of daily deaths are due to end-stage organ failure), there is a 70% increase in patients assessed as suitable for an organ transplant3. In Iran, the rate of organ donation from brain-dead patients is only 1.7 % pmp. This percentage shows that there are very few brain-dead candidates for organ donation in Iran.

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Health providers, especially nurses are involved in the organ donation process in brain-dead patients4. In the US, most of the nursing education curriculums have topics about transplantation, but few discussed the organ donation consent procedure or the benefit of discussing organ donation during primary health care visits4. This problem also exists in medical school curriculums in other countries16. Nurses as front-line health professionals are in a position to recognise the initial signs of brain death in the patient that they care for17. Therefore, nursing students of the future have the potential to be responsible for the care of brain-dead patients, the organ donation process and transplantation procedures, and their knowledge and attitude will affect the quality of care delivered to donors and recipients. With this concept in mind, this study aims to examine nursing students’ attitudes towards brain death, organ donation and transplantation in southeast Iran.

Method Design This study is a descriptive, cross-sectional study. The research ethics committee of Kerman Medical University approved the study. A census sample consisting of 373 nursing students from the Razi School of Nursing and Midwifery participated in this study and were supervised by Kerman University of Medical Sciences. We gained approval from the department heads of the Razi School of Nursing and Midwifery, prior to the collection of data.

Instruments Demographic information Firstly, a questionnaire was developed to obtain demographic information, which was assumed to influence attitudes towards organ donation and brain death. It included questions about gender, age, marital status and education level.

Attitude towards organ donation and brain death Watkinson developed a questionnaire of 38 items that assessed nurses’ attitudes towards organ donation and brain death18. Kim et al., in South Korea, used this same questionnaire and decreased its items to 2819. In this present study, we used 22 items of the questionnaire. The original version was developed in English language. For translation of the questionnaire from English into Farsi, the standard forward-backward procedure was applied. Two professional translators independently translated the items and response categories and, then, temporary versions were provided. For clarity, the items of the questionnaire were translated back into English, and, after careful cultural and religious adaptation, the 22-item final versions were provided. The questionnaire consists of four domains: “Discomfort with organ donation” (six items), “Enhancing 21

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quality of life” (six items), “Willingness to be a donor” (seven items) and “Rewarding experience” (three items). The items’ responses were graded from 1 to 5 (1=strongly disagree, 5=strongly agree). The scale scores ranged from 22 to 110 and the greater score indicated a positive attitude towards brain death and organ donation. The translated questionnaire went through pilot testing. No evidence assessing the nurses’ attitudes regarding brain death and organ donation exists in Iran, so the validity and reliability of the questionnaire was rechecked through face validity. Ten faculty members in the Nursing School at Kerman University reviewed the content of the questionnaire from a cultural perspective. They agreed that the translated questionnaire was culturally adapted within the research context. To reassess the reliability of translated questionnaire, alpha coefficients of internal consistency (n=20) were computed. The alpha coefficients were 0.78, reflecting acceptable reliability and validity.

Data collection and analysis Approval for this study was obtained from the institutional review board at the Kerman University of Medical Science, prior to implementation of the study. All participants were provided with a full explanation of the study and invited to participate. Confidentiality and anonymity were strictly observed. Informed consent to participate in the study was obtained from all participants. Nursing students were told that they had the right to withdraw at any time throughout the study. They were also instructed not to state any name or other personal information on the questionnaires in order to ensure confidentiality. Participants were recruited from the Razi School of Nursing and Midwifery. An anonymous questionnaire was handed out to participants. The Statistical Package for the Social Sciences (SPSS) version 18 was used to analyse the data. Descriptive statistics were computed for the study variables. The Kolmogorov-Smirnov test (a non-parametric test of the equality of continuous, one-dimensional probability distribution, that can be used to compare a sample with a reference probability distribution or to compare two samples)20 was conducted to indicate that the data was sampled from a population with normal distribution. The result of the Kolmogorov-Smirnov test for the questionnaire showed that the data distribution was not normal. Nonparametric tests including Mann-Whitney U and KruskalWallis tests were used to compare the mean score of attitudes according to demographic information. (These are nonparametric methods of testing whether the samples originate from the same distribution and is used for comparing two or more samples that are independent, and that may have different sample sizes or groups21.) The p value considered was 0.05, therefore, the results showed a difference that is statistically significant. 22

Results Sixty-eight per cent (68.8%) of participants were male and unmarried. Sixty-two per cent (62.2%) of participants were 22 years of age or younger. Demographic characteristics of the study subjects are listed in Table 1. Table 1: Demographic information of the study participants

Characteristics

Male

118

31.2%

Female

260

68.8%

≤22

143

37.8%

>22

235

62.2%

First year

22.2%

Second year

155

41%

Third year

21.2%

Fourth year

15.6%

Married

21.4%

Unmarried

297

78.6%

Gender

Age

Educational level at nursing school

Marital status

The nursing students’ mean score measuring their attitude towards brain death and organ transplantation was 88.37 ± 10.37 (Table 2). The interpretation of these results shows that nursing students had positive attitudes towards brain death and organ transplantation. The “Enhancing quality of life” component of the questionnaire had the highest mean score (25.49 ± 3.38). The lowest mean score belonged to the “Rewarding experience” component (12.32± 2.02) (Table 2). Fifty-five per cent (55.3%) of participants strongly agreed that “Medical insurance should be extended to include organ transplant surgery”. Fifty-four per cent (54%) of participants strongly agreed that, “If I donate my organs in future, my soul would be comforted” (Table 3). Application of the Mann-Whitney U test showed that there was significant difference in total mean rank of attitude towards brain death and organ transplantation according to gender. Female nursing students had a more positive attitude towards organ donation than their male colleagues. Based on the results of applying the Mann-Whitney U and Kruskal-Wallis tests, significant differences arose in the “Enhancing quality of life” component score, according to the participants’ gender (p=0.001) and educational level (p=0.04).The female students had a more positive attitude in “Enhancing quality of life” component score towards organ donation than male students. Also, the Mann-Whitney U test showed that there was a significant difference in the “Willingness to be a donor” component score according

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to the participants’ gender (p=0.03). Again, female nursing students have a more positive attitude in “Willingness to be a donor” component score towards organ donation than male nursing students (Table 4).

Numerous studies have shown that most nursing students

Discussion

donation17. Stadlbauer et al. indicated that 86% of students

In this present study, we assessed nursing students’ attitudes towards brain death, organ donation and transplantation. The findings revealed that there are positive attitudes towards brain death, organ donation and transplantation in south-east Iran.

and nurses express positive attitudes towards organ donation17,22-24. Shabanzadeh et al. stated that 75% of nursing students had a positive attitude towards organ and patients had a positive attitude and agreed with the law regarding organ donation, while 16% of intensive care unit (ICU) nurses think that this law is unethical22. In a survey in Iran, Nasrolazadeh et al. showed that 84.3% of kidney transplantation ward nurses have a positive

Table 2: Mean and SD of questionnaire total score and its components scores

Components

Minimum

Maximum

mean

Discomfort with organ donation

13.00

30.00

21.44

3.19

Enhancing quality of life

11.00

30.00

25.49

3.38

Willingness to be a donor

12.00

35.00

29.10

4.36

Rewarding experience

5.00

15.00

12.32

2.02

110

88.37

10.37

Total score

Table 3: Nursing students’ attitude towards brain death and organ transplantation

Items

Strongly disagree

Disagree n(%)

No opinion n(%)

Agree n(%)

Strongly agree n(%)

1. If an approach to the family members who have a braindead patient for the organ donation is made, they will be upset

44(11.6)

70(18.5)

80(21.2)

113(29.9)

71(18.8)

2. My family would be upset when they were required to consent to my organ donation after my brain death

8(2.1)

27(7.1)

87(23.0)

177(46.8)

79(20.9)

3. If I were asked for my family’s organ donation, I would be upset

13(3.4)

93(24.6)

158(41.8)

79(20.9)

34(9.0)

113(29.9)

199(52.6)

38(10.1)

121(32.0)

209(55.3)

56(14.8)

98(25.9)

202(53.4)

58(15.3)

91(24.1)

204(54)

61(16.1)

145(38.4)

156(41.3)

66(17.5)

184(48.7)

121(32.0)

n (%)

4. It is valuable to discuss organ donation with the dead patient’s family members after declaration of brain death 5. Medical insurance should be extended to include organ transplant surgery

2(.5)

35(9.3) 6(1.6)

5(1.3)

6. In the event of my own death, my choice would be to donate my own organs

8(2.1)

14(3.7)

7. If I donate my organs in future, my soul would be comforted

8(2.1)

17(4.5)

8. I am proud of being involved in the care of transplant recipients

4(1.1)

12(3.2)

9. Working with transplant recipients has positively inﬂuenced my opinion of organ donation

2(.5)

5(1.3)

Table 4: comparison of attitude according to demographic information

Discomfort with organ donation

Enhancing quality of life

Willingness to be Rewarding a donor experience

(p value)

Gender

0.09

0.001*

0.03*

0.11

0.007*

Age

.63

.09

.25

0.14

Marriage status

.08

.78

.06

.12

0.13

Educational level

.39

0.04*

.06

.24

0.08

Total score (p value)

Values marked*are considered significant

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attitude towards organ transplantation, but only 40% of

towards donation15. Abbasidolatabadi et al. studied 173

them know about brain death and organ donation . Nurses’

nursing students in Tehran (the capital of Iran) and observed

attitudes towards organ donation are different and may

that students that had progressed further through the course

show doubt. Most nurses explained that the reason for their

(higher level of education and understanding of the topic),

disagreement with organ donation is the lack of respect to

had a more positive attitude towards organ donation7.

the body as it undergoes a surgical procedure to procure

Tokalak et al. also reported that students who had progressed

the organs . It has been acknowledged that formal training

through the course had a more positive attitude towards

and education on organ donation can successfully influence

organ donation16. Conesa et al. concluded that teenagers

student nurses’ attitudes, encourage communication and

with a higher education have more favourable attitudes

registration behaviours and help improve knowledge about

towards organ donation26. However, some studies found

donor eligibility and brain death31. Akgün et al. indicated that

inconsistent results27,28. In Greece, Symvoulakis et al. found

despite a positive attitude and knowledge of the participants,

that participants with a lower level of education had a

their willingness to participate in the donation process was

more positive attitude towards organ donation27. Alizadeh

very low, thus knowledge alone is not sufficient — opportunity

et al. indicated in his study that there were no significant

for practice must be provided . Thus, demonstrated positive

differences in the attitudes regarding brain death and

attitude does not necessarily convert to a specific action or

organ donation between participants with differing education

behaviour19. All our participants were Muslim. As previously

levels6. Abbasidolatabadi et al. stated that poor knowledge

stated, in Islam, every one who rescues another, like

about brain death creates a negative attitude7. In Iran, very

that, rescues all humans. Organ donation is a godly and

little time is dedicated to teaching about organ donation and

benevolent work .

transplantation within the nursing education curriculums. To

raise awareness among students, education related to organ Based on our study findings, a significant difference was

donation should be enhanced and sustained. Education

found between male and female students in the “Enhancing

programmes can be carried out to motivate those who are

quality of life” and “Willingness to be a donor” components.

uncertain about donation.

In a study in China, 90% of participants were willing to donate their organs. There were no significant differences in their

Limitations

willingness to participate in the donation process according

Our study has several limitations. The sample of participants,

to demographic information25. Female medical students in

which is not representative of all nursing students, could

Turkey showed a lower willingness for donation24. Alizadeh

reduce the generalisation of the findings. Use of self-report

et al. did not observe any significant difference in attitudes

questionnaires may lead to an overestimation of some of the

of nursing students regarding organ donation, according to

findings due to variance. Another consideration is the limited

their demographic information6. Although the findings of the

time that participants have to fill in the questionnaire. To

current study demonstrate the significant difference between

reduce this limitation, the first author asked participants to

male and female students in the “Enhancing quality of life”

fill in the questionnaire whenever or wherever they preferred.

and “Willingness to be a donor” components, further study with a larger sample size could be conducted to evaluate

Conclusion

whether any direct or indirect relationship exists between

This study indicates a positive attitude towards brain death

nursing student attitudes towards organ donation, and

and organ donation in bachelor nursing students in south-

demographic information.

east Iran.

Our survey results also identified significant differences

However, attitudes of these students may alter in the

in the “Enhancing quality of life” score, according to the

future, because they have very limited experience in the

participants’ education level. Participants in the second year

management and nursing care of brain-dead patients. Care of

of the nursing course have a more positive attitude towards

these patients is a difficult and stressful process29 and without

organ donation than other students. This is consistent

the background knowledge and skills, the process can result

with earlier studies conducted by Ghadi Pasha et al.,

in negative mental and psychological effects on the nurse14.

Abbasidolatabadi et al. and Tokalak et al.

. Ghadi Pasha

In Iran Salehi et al. showed that students had a positive

et al. found a significant difference in attitude regarding brain

attitude towards organ donation when they were deciding for

death and organ donation in medical students according

themselves, but they were more aware of the sensitivities of

to their level of education. They showed that participants

their families. This study indicates that nursing students did

with a higher education level indicated a positive attitude

not have the knowledge or comprehension of brain death

7,15,16

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and organ donation, but their attitudes were influenced by social media and TV programmes run in Iran in recent years . 4

Therefore, the attitudes of nursing students can be influenced by incorporating brain death and organ donation education into the nursing course curriculum, thus influencing and developing a strong social culture4,17. Changes in the nursing course curriculum to include education on brain death and organ donation will encourage a positive attitude towards organ donation, provide the nurses with the skills to recognise and care for the brain-dead patient and, in turn, this change in culture will improve organ donation and organ transplant rates in Iran4.

References

13. Besser A, Amir M & Barkan S. Who signs an organ transplant donor card? A study of personality and individual differences in a sample of Israeli university students. Pers Individ Dif 2004; 36:1709–1723. 14. El-Shoubaki H, Bener A & Al-Mosalamani Y. Factors influencing organ donation and transplantation in State of Qatar. Transplant Med 2006; 18(6):97–103. 15. Ghadi Pasha M, Nikiyan Y, Salehi M & Tajodin Z. The study of physician attitude concerning organ donation and the level of information about laws and sanctions and the procedure in brain death. Sci J Forensic Med 2008; 14:112–6. 16. Tokalak I. Knowledge and Attitudes of High School Students Related to Organ Donation and Transplantation: A CrossSectional Survey in Turkey. Saudi J Kidney Dis Transplant 2006; 17(4):491–496. 17. Shabanzadeh AP. Organ and tissue donation knowledge among intensive care unit nurses. Transplant Proc 2009; 41:1480–2.

Abbasi M & Rahmati M. Brain death and transplant organs from the perspective of jurisprudence, ethics and law and its impact on medical education. J Med Ethics Hist Med 2011; 4(2):23–33.

18. Watkinson GE. A study of the perception and experiences of critical care nurses in caring for potential and actual organ donors: implications for nurse education. J Adv Nurs 1995; 22:929–940

Yousefi A, Ziaee E, Ghaljaee F & Azarbarzin M. Brain death and transplant organs from the perspective of jurisprudence, ethics and law and its impact on medical education. Iran J Med Educ 2012; 11(9):1366–1375.

19. Kim JR, Fisher MJ & Elliott D. Attitudes of intensive care nurses towards brain death and organ transplantation: instrument development and testing. J Adv Nurs 2006; 53(5):571–582.

3. Yousefi H, Roshani A & Nazari F. Experiences of the families concerning organ donation of a family member with brain death. Iran J Nurs Midwifery Res 2014; 19(3):323–330. 4.

Salehi S, Kanani T & Abedi H. Iranian nurses’ experiences of brain dead donor’s care in intensive care units: A phenomenological study. Iran J Nurs Midwifery Res 2013; 18(6):475–482.

5. Arjmand B, Aghayan SH, Goodarzi P et al. Knowledge and Attitude of Donor Cardholders toward Organ and Tissue Donation and Transplantation in an Iranian Tissue Bank: A Case-Control Study. Transplant Proc 2009; 41(7):2715–2717. 6. Alizadeh Taghiabad B, Hasanzadeh F, Rayhani T & Karimi H. Comparing Attitudes of Nursing Students and Students of Islamic Sciences Regarding Organ Donation after Brain Death in Mashhad in 2008. Modern Care Journal 2014; 11(1):63–70. 7. Abbasidolatabadi Z, Farahani B, Fesharaki M & Najafizadeh K. Effect of education about brain death and organ donation on attitude and knowledge of nursing students. Iran J Crit Care Nurs 2010; 3(3):109–112. 8. Najafizade K, Ghorbani F & Bahadory F. Brain death detection to donation. Tehran: Kian Rayane Sabz Publication, 2008. 9. Zohoor AR & Piri Z. Attitudes of Physicians and Nurses of Intensive Care Units to Organ Transplantation with Brain Dead in the Hospitals Affiliated with Iran University of Medical Sciences. Journal of Iran University of Medical Sciences 1983; 11(39):97–106. 10. Hoseinrezaei H, Khanjani N & Nakoeimoghadam M. Families’ experiments about organ donation in their relatives with brain death: a phenomenology study. Q Horizon Med Sci 2013; 18(5):116–122. 11. Arjmand B, Aghayan SH, Goodarzi P, Razavi SH, Jafarian A, Larijani B, Khalooghi K, Charmchi E & Arjmand F. Knowledge and Attitude of Donor Cardholders toward Organ and Tissue Donation and Transplantation in an Iranian Tissue Bank: A Case-Control Study. Transplant Proc 2009; 41(7):2715–2717. 12. Khoddami Vishteh HR, Ghorbani F, Ghobadi O et al. Causes and follow up outcomes of brain dead patients in Shahid Beheshti University of Medical Sciences hospitals. Pejouhandeh 2010; 15(4):171–8.

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20. http://en.wikipedia.org/wiki/Kolmogorov–Smirnov_test Accessed April 2015. 21. http://en.wikipedia.org/wiki/Kruskal–Wallis_one-way_analysis_ of_variance Accessed April 2015. 22. Stadlbauer V, Steiner P, Schweiger M, Sereinigg M & Tscheliessnigg K. Knowledge and attitude of ICU nurses, students and patients towards the Austrian organ donation law. BMC Med Ethics 2013; 14:32. 23. Nasrollahzadeh D, Siavosh H & Ghods AJ. Intensive Care Unit Nurses’ Attitudes and Knowledge toward Brain Death and Cadaveric Renal Transplantation in Iran. Transplant Proc 2003; 85:2545. 24. Akgun HS, Bilgin N, Tokalak I & Kut A. Organ Donation: A Cross-Sectional Survey of the Knowledge and Personal View of Turkish Health Care Professionals. Transplant Proc 2003; 35:1273–1275. 25. Wang W, Tian H, Yin H, Liu H & Zhang XD. Attitude toward organ donation in China. Chin Med J 2012; 125(1):56–62. 26. Conesa C, Ríos Zambudio A, Ramírez P et al. Socio-personal profile of teenagers opposed to organ donation. Nephrol Dial Transplant 2004, 19:1269–1275. 27. Symvoulakis EK, Komninos ID, Antonakis N, Morgan M, Alegakis A & Safantakis T. Attitudes to kidney donation among primary care patients in rural Crete, Greece. BMC Public Health 2009; 9:54. 28. Kent BC. Protection behavior: A phenomenon affecting organ and tissue donation in the 21st century? Int J Nurs Stud 2004; 41:273–84. 29. Rahmani F, Behshid M, Zamanzadeh V & Rahmani F. Relationship between general health, occupational stress and burnout in critical care nurses of Tabriz Teaching Hospitals. Iran J Nurs 2010; 23:55–63. 30. Azmandian J, Poorhoseini S, Shokouhi M & Mirzaei MR. Study of education effect on nurses’ knowledge and attitudes about organ donation at the time of brain death. Iran J Crit Care Nurs 2013; 6(1):11–20 31. McGlade D & Pierscionek B. Can education alter attitudes, behavior and knowledge about organ donation? A pretest–posttest study. BMJ Open 2013; 3:e003961.

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ARTICLE

Supporting transplant recipients’ correspondence to donor families Eva Mehakovic • MA (HealthAdmin) Director, Clinical Programs, Organ and Tissue Authority PO Box 295, Civic Square, ACT 2608, Australia (02) 6198 9881 Email eva.mehakovic@donatelife.gov.au Amanda Bell • CertIVTAE Project Manager, Organ and Tissue Authority, PO Box 295, Civic Square, ACT 2608, Australia (02) 6198 9881 Email amanda.bell@donatelife.gov.au

Abstract The Organ and Tissue Authority (OTA) conducts research to gain an understanding of the family experience before, during and after donation, which includes investigating donor family attitudes in relation to contact with transplant recipients. The Wave 1 Donor Family Study provided feedback from 185 family members who consented to donation in 2010 and 2011, and reported that approximately seven in every 10 donor families (68%) received a letter from at least one transplant recipient and 100% of these families found comfort in this correspondence. The OTA and the DonateLife Network support anonymous communication between transplant recipients and donor families, and is working to encourage correspondence through a new thank you card for recipients to use when writing to donor families. These thank you cards will complement the existing Correspondence Guidelines — Transplant Recipients and will be evaluated to determine if they have an impact on the level of correspondence from recipients to donor families.

Introduction The Organ and Tissue Authority (OTA) commissioned research in 2014 to gain an understanding of the family experience of the donation process and their perception of the care they received before, during and after their donation experience. The purpose of the study was to provide evidence-based insight into families’ experiences of the donation process from initial donation conversations through to the follow-up support provided to families after donation. The study aimed to inform improvements in the care and support provided to donor families by: • determining factors influencing the donation decision to consent or decline; • identifying the nature and quality of services provided to families at all stages of the donor families’ experiences, including the timing of support and communication; • identifying the way in which information is provided to families to help them with their donation decision; • determining perceptions of care and support provided before, during and after the donation process; • identifying family preferences in relation to support services; • identifying aspects improvements;

service

provision

requiring

• investigating family attitudes in relation to contact with recipients and support provided; and 26

• investigating family attitudes on the impact of their donation decision. The focus of this article is on family attitudes in relation to contact with transplant recipients and support for correspondence to donor families.

Donor family support services The Australian Government has invested in a national reform programme to improve access to life-transforming transplants for Australians through a sustained increase in organ and tissue donation by implementing a nationally coordinated approach to improving the donation process and systems. Measure 6 of the national reform programme is Support for Donor Families, which aims to provide families of deceased organ and tissue donors with respectful support that is responsive to the needs of each family. This support is provided through the National Donor Family Support Service (NDFSS), which includes dedicated personnel and a range of resources to support families through a difficult time of their lives. DonateLife Donor Family Support Coordinators (DFSC) are employed in every state and territory to provide counselling, ongoing support and a suite of resources to support donor families. One of the many important functions fulfilled by the DFSC is the coordination of correspondence between donor families and transplant recipients, in collaboration with transplant coordinators. It is a legal requirement under the Volume 24 Number 2 – July 2015

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Figure 1

state and territory Human Tissue Acts (or equivalent) that no identifying information about a donation, the donor or recipient is disclosed by the health professionals involved. To ensure confidentiality is maintained, any correspondence is conveyed between parties anonymously. To assist donor families and transplant recipients wishing to correspond, the OTA, DFSCs and Transplant Nurses’ Association (TNA) have developed the Correspondence Guidelines — Donor Families and the Correspondence Guidelines — Transplant Recipients available on the OTA’s website at http://www.donatelife.gov. au/donor-family-support-resources

National study of family experiences of organ and tissue donation The National Study of Family Experiences of Organ and Tissue Donation (the Donor Family Study) is a retrospective and ongoing research project which helps to inform continued improvement in the support offered to families at hospitals and after the donation through the National Donor Family Support Service, and provides data for review of various initiatives such as the DonateLife professional education programme. This research builds on similar research on donor families carried out in Australia since 1995, by the Australasian Transplant Coordinators Association (ATCA). The OTA will undertake ongoing waves of this research to occur every two years. The OTA released the report of the Wave 1 Donor Family Study (Proof Research1) in September 2014, which involved 132 families who made a donation decision in 2010 and 2011. A total of 186 individual family members (185 family members who consented to donation and one family member who declined donation) agreed to participate in the study and completed a survey questionnaire and/or participated in a face-to-face interview. The report can be accessed at http://www.donatelife.gov.au/national-wave-1-donor-familystudy-0

Figure 1

The Wave 1 Donor Family Study reported that approximately seven in every 10 donor family (68%) received a letter from at least one transplant recipient. Of these families, 100% found comfort from the correspondence, 87% found great comfort Figure and213% found some comfort (Figure 2). Deidentified contact with recipients Yes, from one recipient Yes, from more than one recipient No, I chose not to receive any correspondence No, even though I chose to receive correspondence No, Transplantation did not proceed

Base: Total Wave 1 sample of unique donor families, less non response (n+125

It made a big difference hearing from the recipients and knowing how much better their life has become though my husband’s donation. The letter I received from a recipient (my sister’s donations assisted at least five people) was wonderful. Even though I knew that the donations were a precious, marvellous gift, the heartfelt gratitude of the recipient was very moving. To think that my sister had helped this lady to live a fuller life and that she felt like a part of her life had been given back is a truly great thing.

Other key motivating factors for families to agree to organ and tissue donation included the belief that their loved one would have wanted to help others and to enable someone else to live a better life.

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Base: Families who have received correspondence from at least one recipient, less non response (n=84)

Figure 2

A key finding of the study was that organ and tissue donation can bring comfort to donor family members. Most donor families surveyed (81%) said organ and tissue donation provided an opportunity for something positive to come out of a tragedy. For 94% of donor family members, donation provided them with comfort in their loss of a loved one (Figure 1).

The Donor Family Study also investigated donor family attitudes in relation to contact with recipients. The Study posed specific questions to further understand whether the donor family had chosen to receive correspondence from the recipient; whether correspondence had been received; if correspondence had been received whether it was of comfort and; how they felt if no correspondence was received.

68% of donor families received a letter from at least one transplant recipient and found comfort from this correspondence.

Almost one-quarter of donor families (24%) reported that they had not received any correspondence from recipients, even though they chose to. There were mixed feelings amongst these families. Some families respected the decision 13 of transplant recipients not to correspond: It is not concerning, I think they do not have to feel like they have an obligation except to live well and respect the donation. I do not expect it and as far as I am concerned there is no need to. It is not about me — it is about the recipient being 27

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families some kind of confirmation that they did make the right decision. I would highly encourage any recipients to make contact with the donor family as it helped me and my family a great deal to know how receiving mum’s organs changed someone’s life.

The emotional challenge and value of correspondence To assist donor families and transplant recipients, the Correspondence Guidelines — Donor Families and the Correspondence Guidelines — Transplant Recipients are provided to donor families and transplant recipients with clear indication that there is no obligation for either party to write or respond to letters received. However, for those who wish to make contact, these guidelines provide assistance and describe how anonymity is maintained and correspondence is sent through the transplant coordinators and the donor family support coordinators in every DonateLife Agency.

Figure 3

given hope and if they can use these organs/tissues I wish them and their family well. I can understand their reluctance to write. Others were a little disappointed and hoped to hear from the recipients one day: Very sad. I was hopeful that the recipient, any recipient, would contact us, with stories of hope and gratitude, but alas we haven’t received any — yet (staying positive). I would love to hear from the transplant recipient. It would definitely help me with my healing. Donor family members who chose not to receive any correspondence from transplant recipients (6% of donor families) are generally comfortable with this decision: I feel comfortable with my decision not to have correspondence.

Feedback from donor families in the Wave 1 Donor Family

Study indicate that some families find great value in receiving acknowledgement and thanks from transplant recipients as it provides comfort in their decision to donate and confirms the positive impact of the donation for the transplant recipient. While families recognise that writing to the donor family may be difficult, they suggest that correspondence should be encouraged: I understand that the recipients and their families must be experiencing a whole kaleidoscope of emotions about the donation, but just a short note of acknowledgement would have been very much appreciated. It would give the donor 28

While it is important that transplant recipients are aware they have the opportunity to write to donor families and understand the positive impact this correspondence can have for donor families, it is equally important that they do not feel obligated to write. In acknowledgement of the difficulty most recipients experience in writing to a donor family, Selves and Burroughs2 advocate speaking openly about the possibility of correspondence with their transplant patients even as early as the transplant assessment phase. They have found that when a recipient writes, they report a sense of relief knowing that it is possible for them to do so. It is their way of acknowledging their gratitude and allows them to express their sympathy for the donor family’s loss. Poole et al.3 conducted a small study of 25 heart recipients which explored responses to “obligatory” letter writing. In their study, recipients conveyed distress around three broad themes: the process of writing the letter; waiting for a response; and the inability to write the letter. Comments from their participants included: I would not know where to begin ... I mean, I got life, they lost a life.

14 by Barnwell, An unpublished Australian study conducted Correspondence between transplant recipients and families of donors: Challenges and Strategies in 2004 recognised the difficulty that recipients may experience in writing to donor families. Barnwell stated that: Transplant recipients face considerable challenges in expressing both sympathy and gratitude to unknown others, and for many this may prove too difficult. Barnwell explored strategies implemented between 1994 and 2004 to ascertain whether there was a way to increase the correspondence from recipients to donor families. She found that guidelines, protocols, and education sessions

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for recipients and health professionals contributed to an increase in the correspondence rate from 25% in 1994 to 71% in 2004.

recipients about the ability to write to their donor family and to “create awareness and a desire for the recipients to voluntarily correspond with their donor family”4.

Selves and Burroughs2 confirmed that transplant recipients go through a period of physical and psychological adjustment following transplantation, and in their opinion it was important to support and allow each individual to adjust to these changes in their own time. Furthermore, they were of the view that any distress experienced by the recipient in writing to a donor family should be considered a normal emotion rather than as a barrier to writing.

Thank you cards are being printed by the OTA and will be distributed to transplant units from July 2015, with a distribution and evaluation procedure outlining the purpose of the thank you cards and their provision to recipients with the Correspondence Guidelines — Transplant Recipients.

Encouraging correspondence between transplant recipients and donor families The Transplant Liaison Reference Group (TLRG) was established by the OTA in 2012 and plays an important role in connecting the OTA with the transplant sector. Membership of the TLRG consists of representation from the Transplant Society of Australia and New Zealand, the TNA, the Australian and New Zealand Intensive Care Society and the Australasian Transplant Coordinators Association. The OTA sought TLRG advice on ways to support promotion of correspondence from transplant recipients to donor families. The TLRG discussed the Correspondence Guidelines — Transplant Recipients in August 2014 and agreed that additional supports were needed to assist transplant recipients to write to donor families. TLRG members agreed that providing recipients with a dedicated ‘thank you’ card, with the Correspondence Guidelines — Transplant Recipients, was one way to support transplant recipients who choose to write to their donor family.

Conclusion Donation and transplantation has a profound impact on people’s lives. It is the personal choice of a transplant recipient as to whether they choose to write to the donor family. These decisions are theirs to make and must be respected as such. However, it is important to provide support and assistance to those people who wish to write. The correspondence guidelines and thank you card are small ways to help recipients in writing to their donor family, which can provide great comfort to the donor family.

References 1. Proof Research. National study of family experiences of organ and tissue donation: Wave 1 — 2010 and 2011. Canberra, ACT: Organ and Tissue Authority, 2014. Retrieved from http://www. donatelife.gov.au/national-wave-1-donor-family-study-0 2. Selves L & Burroughs AK. Letters from transplant recipients to the family of their donors are a positive experience for both, and Figure can 5help donation. Am J Transplant 2011; 11:1994–1995. 3. Poole J, Shildrick M, De Luca E et al. The obligation to say ‘Thank You’: Heart transplant recipients’ experience of writing to the donor family. Am J Transplant 2011; 11:619–622. 4. Mackay T. Thank you — how hard is it? [Editorial]. Transplant Journal of Australasia 2014; 23(1):3.

A number of design concepts were explored and a preferred theme was chosen, which provides some variety and options for personal choice by the transplant recipients (Figures 3 & 4). It is hoped that the provision of the thank you cards to the recipients as part of the ongoing, follow-up care, may assist them to write a personal note with the assistance and support of the transplant coordinator. The OTA will work with the TNA to pilot promotion of the thank you cards for 12 months to determine if recipients choose to use the thank you cards and whether it has an impact on the level of correspondence to donor families. The pilot will involve the DFSC monitoring the number and types of cards and correspondence sent to donor families over the 12-month period and assessing whether there has been a change in the level of correspondence since the card was introduced. Feedback from the transplant coordinators will also be sought, through the TNA, on reactions from their patients when explaining the thank you cards, their personal opinions on the cards and practicalities for implementation. The collaboration between OTA, TNA, DFSC and transplant coordinators will raise further discussion with transplant

Volume 24 Number 2 – July 2015

Figure 4

TRANSPLANT JOURNAL OF AUSTRALASIA

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

Volume 24 Number 2 – July 2015

TRANSPLANT JOURNAL OF AUSTRALASIA

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

Treasurer

Secretary

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Katherine Bateman

Nicole Williams

Janine Sawyer

Tel: 0438 079 762

Tel: (08) 8204 5819

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william1@bigpond.net.au

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QLD

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Kylie Bragg

Vicki Jermyn

Maree Jarrett

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Susan Virtue

Margaret Porra

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VIC/TAS

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WA President Corina Jary Tel: (08) 9224 8793 corina.jary@health.wa.gov.au

President Jennifer Hislop Tel: 0448 367 768 j.hislop@alfred.org.au

Sue Rixon

Secretary

Tel: (07) 3240 7481

Robyn Kovac

sue_rixon@health.sa.gov.au

Tel: (08) 9224 2630

SA/NT

robyn.kovac@health.wa.gov.au

Secretary

President

Treasurer

Lauren Mitchell

Jane Van der Jeugd

Trevor Cherry

Tel: (03) 9076 2164

Tel: (08) 8204 6617

Tel: (08) 9224 2244

l.mitchell@alfred.org.au

jane.vanderjeugd@health.sa.gov.au

trevor.cherry@health.wa.gov.au

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

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Volume 24 Number 2 – July 2015

Transplant Nurses’ Association

Incorporated under NSW Incorporations Act 1984

TRANSPLANT JOURNAL of AUSTRALASIA The official Journal of the Transplant Nurses’ Association

GUIDELINES FOR AUTHORS The TJA is published three times a year. Original contributions relevant to organ and tissue donation and transplantation are invited. Manuscripts should be submitted to the Editor by email (TJAeditor@tna.asn.au) or via the TNA website (www.tna.asn.au). COPYRIGHT The TJA does not hold copyright. As such, authors are permitted to re-publish their work. However, authors must disclose to other Editors that parts of their manuscripts have been previously published. MANUSCRIPT OUTLINE Research, audit, survey or project report • Title; • Abstract; • Introduction (why did you start?); • Methods (what did you do and how did you do it?); • Results (what did you find?); • Discussion (what does it mean?); • Conclusion, including study limitations and recommendations for further research; • References. These headings can be altered to suit the type of study you have completed and your personal style. Article, literature review, conference paper • Title; • Abstract; • Introduction; • Discussion – include appropriate subheadings and reference to the literature; • Conclusion/recommendations; • References. Clinical case study The focus of these papers is patient care and their scope is unlimited. A sample format follows: • Title; • Abstract; • Introduction; • Presentation of the case including nursing care and medical treatment; • Nursing outcomes/ implications; • Conclusion/recommendations; • References.

www.tna.asn.au ! P.O. Box M94, PO Missenden Road, Camperdown, NSW 2050 Australia ! ABN 18 351 952 838

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.

Benefits

✦ 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. ✦ 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

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