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Author Topic: Donor Outcomes: Why We (Transplant Professionals) Need to Listen!  (Read 80 times)

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Offline Clark

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http://cjasn.asnjournals.org/content/early/2018/05/30/CJN.05000418.full

Donor Outcomes
Why We Need to Listen
   Milda R. Saunders1, and Michelle A. Josephson2
Published online before print May 2018, doi: 10.2215/ CJN.05000418
CJASN May 2018 CJN.05000418

Recently there has been increasing appreciation of and emphasis on quantifying the long-term medical risks of kidney donation, including those of ESKD, hypertension, and pregnancy complications (1–5). These efforts are important and long overdue. Yet, there is still uncertainty about how to quantify kidney donor medical risks and what factors increase the likelihood of these complications. Not surprisingly, the focus of this work has been slanted toward medical outcomes, overlooking other potentially meaningful sequelae. Donors also face additional consequences, including financial and psychosocial burdens (6,7). Outcome studies have generally been designed and performed without the input of donors regarding which end points are the most important to them. In this issue of the Clinical Journal of the American Society of Nephrology, Hanson et al. (8) report on their work using focus groups to ask former donors in Australia and Canada about their experience donating and what outcomes are important to them.
Hanson et al. used a mixed-method approach to interview 123 donors in 14 focus groups across two Australian cities (Sydney and Melbourne) and one Canadian city (Vancouver). They used purposeful sampling to include donors of both sexes, across a wide age range, with varying time since donation, various relationships to the recipient, and a range of donation-related complications. They used nominal group technique to brainstorm on a list of outcomes, and then allowed individuals to rank the relative importance of the outcomes. Afterward, each group discussed the reasons for their rankings. They also used strong qualitative methodology to elicit and analyze participant opinions. The focus group transcripts were analyzed using a grounded theory approach for coding. Comparisons within and across groups were made.
Their work had some intriguing findings. Some of the responses (primacy of recipient outcome) are strikingly selfless. Many felt, what one participant is quoted saying, that “one of the key ones for me is the success of the donation for the [recipient].” This may be an illustration of both the type of people that self-select to be kidney donors as well as the relationship between the donor and recipient (e.g., spouse, parent to child). Perhaps not surprisingly, donors characterized recipient graft failure as a particularly devastating outcome “similar to a stillbirth.” This speaks to the need to discuss the possibilities of poor recipient outcomes with donors before donation, to stringently screen for appropriate living donor recipients and, with recipient permission, to inform potential donors when the recipient is particularly high risk.
The authors found that concerns over postdonation kidney function and kidney failure were ranked higher by Canadians than Australians. The authors pose a good set of possible explanations for this difference, including that there were more nondirected donors in the Canadian cohort and that the Canadian donor group was a more recent vintage. It seems counterintuitive that the Canadian donors would be more worried about kidney failure as there is a safety net for donors in Canada (higher priority on the wait list, as there is in the United States), but not in Australia. However, perhaps it is the very existence of the safety net that has caused the higher degree of concern. Learning that there is a priority on the wait list may send a subliminal message that postdonation kidney failure is a real problem rather than a theoretical one. The perceived reality of this potential complication may raise the level of concern.
The focus groups made clear that we need to do a better job of addressing donors’ emotional wellbeing postdonation. Although many donors reported an improvement in their emotional wellbeing and relationships, others had mixed or negative emotional experiences. Patient quotes, including “I was surprised to hear that you suffered depression. I wasn’t told that could be an impact and I think that’s really crucial. People really need to know that’s a possibility. I don’t remember them saying anything about it,” make clear that postdonation mental health is an issue that we as a transplant community need to acknowledge and address. In addition, nondirected donors may be more at risk because they do not directly benefit from the improved wellbeing of the recipient. Transplant programs need to educate all donors about potentially feeling let-down after donation, and offer nondirected donors additional acknowledgment and support postdonation.
Donors also reported wanting more information after donation. Participants voiced interest in learning more about how their own experiences compare with those of fellow donors. With comments such as “They are very good at the beginning at telling you this should happen. …Afterwards, my feeling on it, was they didn’t really follow up with you and say did that happen?...They said the percentages of whatever but am I one of those percentages?” and “We’re all adding to the data pool with our annual lab requisitions, but we don’t hear back as a group on the overall experience. You’ve got a mass of data there….” This message mirrors calls in the transplant community for better tracking and reporting of living donor outcomes. The donor’s statement also serves as an important reminder that donor information should be made available not only to transplant professionals, but also to potential and former donors.
Hanson et al.’s work, although important, has some limitations. First, the authors reported using purposeful sampling, but we do not know how representative the groups were (compared with donors in those transplant units) or what the focus group participation acceptance rate was. It could be that a particular type of donor was more likely to agree to participate in the focus groups, thus biasing the narrative. For example, individuals without complications may have simply returned to their regular life or those with strong negative experience with donation may just want to put it behind them; or conversely, these outcomes, either good or bad, may have motivated them to participate. Second, the donors represented were largely women, white, and from major cities in Western countries. The sex balance is representative of the pool of living donors as a whole. However, racial and ethnic minority donors may have a different experience of donation because of a higher risk of complications, higher financial or psychosocial burden from donation, or different perception of risks (2,9,10). In addition, the concerns of living donors may vary by country (or even region within a given country) on the basis of access to support services including health insurance, primary care, family support, or mental health services.
An additional limitation, acknowledged by the authors, is that the focus groups were limited to individuals who successfully donated. The living donation process affects all of those who walk through the doors of our transplant centers, including those who rule-out, “opt-out,” or are counseled out because of medical uncertainty or psychosocial burdens. These individuals face many of the burdens of a donor evaluation process that requires travel, multiple tests, missed work, and family responsibilities, but they do not receive the internal and social benefits of donation. Instead of being lauded as “heroes,” they may worry about being perceived as failures. To attain a more comprehensive understanding of donor outcome priorities, discussions should also include potential donors who are still being evaluated as well as those who are awaiting a surgery date. Potential donors may opt-out of the process after hearing about potential outcomes. Also, considerations before donation may differ from those after the surgery is completed.
So, what can we take from this work? Using strong qualitative methodology and the donors’ own words, this article beautifully illustrates that past donors also care about nonmedical outcomes. Family life, life satisfaction, lifestyle restriction, and physical function are included in the top 15 donor identified outcomes, and rank above surgical mortality. More than anything, this work demonstrates that we cannot simply assume we know what donors care and worry about. We must talk with them about their priorities and concerns both before and after surgery. Although the study did not involve all donor stakeholder groups and thus cannot provide the entire story, thanks to Dr. Hanson and her team, an important conversation has begun.

Unrelated directed kidney donor in 2003, 58 gallon blood & platelet donor and counting!
Rep to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, & Ad Hoc Public Solicitation of Organ Donors Committees 2005-2011

Offline Clark

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Identifying Outcomes that Are Important to Living Kidney Donors
« Reply #1 on: June 17, 2018, 04:21:08 PM »
http://cjasn.asnjournals.org/content/early/2018/05/30/CJN.13441217.full

Identifying Outcomes that Are Important to Living Kidney Donors
A Nominal Group Technique Study
   Camilla S. Hanson1,2, Jeremy R. Chapman3, John S. Gill4, John Kanellis5, Germaine Wong1,2,3, Jonathan C. Craig1,2, Armando Teixeira-Pinto1,2, Steve J. Chadban6,7, Amit X. Garg8, Angelique F. Ralph1,2, Jule Pinter2,9, Joshua R. Lewis1,2, Allison Tong1,2

Published online before print May 2018, doi: 10.2215/ CJN.13441217
CJASN May 2018 CJN.13441217

Abstract
Background and objectives Living kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices.

Design, setting, participants, & measurements Previous donors were purposively sampled from three transplant units in Australia (Sydney and Melbourne) and Canada (Vancouver). In focus groups using the nominal group technique, participants identified outcomes of donation, ranked them in order of importance, and discussed the reasons for their preferences. An importance score was calculated for each outcome. Qualitative data were analyzed thematically.

Results Across 14 groups, 123 donors aged 27–78 years identified 35 outcomes. Across all participants, the ten highest ranked outcomes were kidney function (importance=0.40, scale 0–1), time to recovery (0.27), surgical complications (0.24), effect on family (0.22), donor-recipient relationship (0.21), life satisfaction (0.18), lifestyle restrictions (0.18), kidney failure (0.14), mortality (0.13), and acute pain/discomfort (0.12). Kidney function and kidney failure were more important to Canadian participants, compared with Australian donors. The themes identified included worthwhile sacrifice, insignificance of risks and harms, confidence and empowerment, unfulfilled expectations, and heightened susceptibility.

Conclusions Living kidney donors prioritized a range of outcomes, with the most important being kidney health and the surgical, lifestyle, functional, and psychosocial effects of donation. Donors also valued improvements to their family life and donor-recipient relationship. There were clear regional differences in the rankings.

Unrelated directed kidney donor in 2003, 58 gallon blood & platelet donor and counting!
Rep to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, & Ad Hoc Public Solicitation of Organ Donors Committees 2005-2011

Offline Clark

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Living Donation: The Donors and Recipient Perspectives
« Reply #2 on: June 17, 2018, 04:24:39 PM »
http://cjasn.asnjournals.org/content/13/6/823

Living Donation
The Donors and Recipient Perspectives
   Maria E. Díaz-González de Ferris1, Lourdes M. Díaz-González2, Michael Ted Ferris3
Published online before print May 2018, doi: 10.2215/ CJN.05520518
CJASN June 07, 2018 vol. 13 no. 6 823-824

We appreciate the opportunity to share our experience and express our thoughts on the work presented by psychologist Hanson et al. (1) from Australia and Canada that describes the short-term outcomes of kidney donors. Our comments reflect the effect that pediatric-onset ESKD has on patients and their families as well as our personal perspective as a donor-recipient team.
Our recipient was born at a time when prenatal ultrasound was a luxury, and a condition that is easy to diagnose prenatally was missed. Our son presented with sepsis due to a urinary tract infection at 18 months of age. His slow progression to adolescent-onset ESKD allowed time for our family to adjust to what was coming and identify potential donors. His multiple surgeries and complications afforded our family opportunities to ask questions of his wonderful providers and prepare … so we thought. What we were not prepared for was the effect that this condition would have on the siblings and the rest of our family. In the end, multiple emotions and concerns occurred during this process … similar to what Hanson et al. (1) reported. However, for us as donors, we learned to look at life in a different light, appreciate every moment that we have, and try to live life to its fullest with no regrets.
As a recipient, my experience was somewhat similar to those of individuals interviewed by Hanson et al. (1) as far as their expressed list of concerns. However, for me, my primary concern was that of the health outcomes for my three donors—above and beyond my own. Adverse health effects to the donors, regardless of my own outcomes, were my top concerns: physically, of course, but mentally as well. It did not occur to me to be concerned for my own health or my own outcomes; as a lifelong patient, I had experience and mental and emotional strength to draw from. Adverse outcomes for myself were to be expected and dispatched accordingly, but I was unprepared for how to deal with potential complications for my donors.
Now, onto the work by Hanson et al. (1). Their 14 focused groups allowed for the identification of 35 outcomes most important to 123 living donors in 2-hour meetings using monetary incentives. An importance score prioritized the outcomes ranked by participants. The authors used an adapted grounded theory approach to identify outcomes and themes from these focused groups. Not all outcomes were identified by all groups, and not all participants ranked all outcomes.
The first thing that caught our attention was the age of the donors (27–78 years old). and the majority of participants donated <6 years before the study, with most <3 years. It would have been interesting to know the recipients’ percentages of life with the disease as a proxy for time to make the decision to donate. It also would have been interesting to see an analysis on the basis of the relationship between the donors and recipients. The majority of participants were from big cities and women, and the most represented race was white. We also noted that most participants had completed high school or higher levels of education, had upper levels of income, and were employed and/or married, making us wonder about the responses by those not represented in this study.
The ten outcomes identified in the two study sites involve the surgery, kidney function, and effect on family, with life restrictions and life satisfaction ranking lower. This makes us wonder about the responses that donors with longer time postprocedure would have.
The work presented by Hanson et al. (1) was conducted in two countries where health insurance coverage is universal and health coverage long after the postoperatory state is not an issue. We want to bring attention to the experience in one of the largest public children’s hospital in México, where the donor is the recipient’s roommate; therefore, pediatric nephrologists in conjunction with the transplant team take care of these adult donors. Although this assists with donors’ health care coverage in the short term, in most cases, long-term coverage is not widely available. However, donation still takes place. The project by Hanson et al. (1) lays the foundation for work that needs to be extended to other countries, cultures, and settings.
We learned that our recipient would face ESKD early in his life. This gave our family time to prepare for the inevitable. Our experience may not represent the majority’s point of views, because our recipient has received three organs (mother, father, and first cousin). However, the patient education for our donors was the same as for everyone in the transplant program. That meant a few hours of patient education and signing surgery consents that were not literacy appropriate or user friendly. In the end, we share the same fears, questions, and hopes that all families affected by ESKD have, and we appreciate the opportunity to share our questions and concerns.

Unrelated directed kidney donor in 2003, 58 gallon blood & platelet donor and counting!
Rep to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, & Ad Hoc Public Solicitation of Organ Donors Committees 2005-2011

 

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