Michelle Irving

Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature

BACKGROUND Transplantation is the treatment of choice for organ failure, but a worldwide shortage of suitable organs exists. We conducted a systematic review of qualitative studies that explored community attitudes towards living and deceased solid organ donation to inform strategies to improve organ donation rates. METHODS Medline, Embase, PsycINFO and EconLIT were searched. Qualitative studies that explored community attitudes towards living and deceased solid organ donation were included. A thematic synthesis of the results and conclusions reported by primary authors was performed. RESULTS Eighteen studies involving 1019 participants were identified. Eight themes emerged. The decision to be an organ donor was influenced by (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences; (v) body integrity; (vi) previous interactions with the health care system-medical mistrust, validity of brain death and fear of early organ retrieval; (vii) the individuals knowledge about the organ donation process and (viii) major reservations about the process of donation, even in those who support organ donation. CONCLUSIONS This review of qualitative studies highlights that seemingly intractable factors, such as religion and culture, are often tied in with more complex issues such as a distrust of the medical system, misunderstandings about religious stances and ignorance about the donation process. Intervention that could be considered includes culturally appropriate strategies to engage minority groups, especially through religious or cultural leaders, and more comprehensively available information about the donation process and its positive outcomes.

Family Perspectives on Deceased Organ Donation: Thematic Synthesis of Qualitative Studies

A major barrier to meeting the needs for organ transplantation is family refusal to give consent. This study aimed to describe the perspectives of donor families on deceased donation. We conducted a systematic review and thematic synthesis of qualitative studies. Electronic databases were searched to September 2012. From 34 studies involving 1035 participants, we identified seven themes: comprehension of sudden death (accepting finality of life, ambiguity of brain death); finding meaning in donation (altruism, letting the donor live on, fulfilling a moral obligation, easing grief); fear and suspicion (financial motivations, unwanted responsibility for death, medical mistrust); decisional conflict (pressured decision making, family consensus, internal dissonance, religious beliefs); vulnerability (valuing sensitivity and rapport, overwhelmed and disempowered); respecting the donor (honoring the donors wishes, preserving body integrity) and needing closure (acknowledgment, regret over refusal, unresolved decisional uncertainty, feeling dismissed). Bereaved families report uncertainty about death and the donation process, emotional and cognitive burden and decisional dissonance, but can derive emotional benefit from the “lifesaving” act of donation. Strategies are needed to help families understand death in the context of donation, address anxieties about organ procurement, foster trust in the donation process, resolve insecurities in decision making and gain a sense of closure.

Community attitudes to deceased organ donation: A focus group study

Background Despite broad community support for organ donation, there is a chronic shortage of donor organs for transplantation. This study elicited community attitudes on deceased organ donation and the current Australian organ donation system. Methods Thirteen focus groups with 114 participants aged between 18 and 75 years. Qualitative analysis using a grounded theory approach was used. Results Participants were generally positive toward deceased organ donation, but this did not always translate to decisions to be a donor. Three main categories of themes emerged. (1) Participants held core beliefs that both encouraged donation, such as “giving is good” and “saving lives,” and discouraged donation, such as loss of body dignity, need for body wholeness, and differing medical care for donors. (2) A range of factors could influence how core beliefs were weighted in the decision-making process, including family, knowledge, information, media, grief, apathy, and fear. (3) Participants discussed the need for a simpler consent system where family members could not overrule their donation decision, greater public awareness for organ donation, and the availability of more information on the organ donation process. Conclusions Opportunities exist to improve deceased organ donation rates by education to improve confidence in the donation process, positive media coverage, and clear information on each religion’s stance on organ donation. Options for greater public recognition for organ donors should be explored. Finally, our findings suggest that aspects of the current donation consent system are not aligned with community values, and reforms should be debated publicly.

What factors influence people's decisions to register for organ donation? The results of a nominal group study.

Rates of transplantation from deceased donors remain low, despite high rates of expressed support. We aimed to better understand this mismatch through determining community attitudes regarding willingness to register as organ donors. Participants were recruited from the general public in four Australian states. Using nominal group techniques, participants ranked factors they believed were important when deciding to register as a deceased donor. Thirteen nominal groups with 114 participants were conducted. 24 factors were ranked by three or more groups. The top ten factors were as follows: saving lives, own decision to donate, family opinions, benefit to recipients, process of organ donation, positive media, positive closure, clarity of consent and body dignity. Other factors included: the consent system, religious and cultural beliefs and incentives for donation. Participant age was a potential modifier of responses. Willingness to register as an organ donor is highly influenced by the altruistic motive of saving lives and improving lives for others; this should be harnessed in communication campaigns. Further research on ethical incentives for organ donation and continued efforts to promote support from religious groups may be useful. Many believe the sole right to consent to donation is theirs and not their families; consent policies reflecting this should be explored.

Obesity and the risk of cardiovascular and all-cause mortality in chronic kidney disease: a systematic review and meta-analysis

Background: Obesity is a risk factor for cardiovascular disease and death in people without chronic kidney disease (CKD), but the effect of obesity in people with CKD is uncertain. Methods: Medline and Embase (from inception to January 2015) were searched for cohort studies measuring obesity by body mass index (BMI), waist:hip ratio (WHR) and/or waist circumference (WC) and all‐cause and cardiovascular mortality or events in patients with any stage of CKD. Data were summarized using random effects models. Meta‐regression was conducted to assess sources of heterogeneity. Results: Of 4065 potentially eligible citations, 165 studies (n = 1 534 845 participants) were analyzed. In studies that found a nonlinear relationship, underweight people with CKD (3‐5) on hemodialysis experienced an increased risk of death compared with those with normal weight. In transplant recipients, excess risk was observed at levels of morbid obesity (>35 kg/m2). Of studies that found the relationship to be linear, a 1 kg/m2 increase in BMI was associated with a 3 and 4% reduction in all‐cause and cardiovascular mortality in patients on hemodialysis, respectively {adjusted hazard ratio [HR] 0.97 [95% confidence interval (CI) 0.96‐0.98] and adjusted HR 0.96 (95% CI 0.92‐1.00)}. In CKD Stages 3‐5, for every 1 kg/m2 increase in BMI there was a 1% reduction in all‐cause mortality [HR 0.99 (95% CI 0.0.97‐1.00)]. There was no apparent association between obesity and mortality in transplanted patients or those on peritoneal dialysis. Sparse data for WHR and WC did not allow further analyses. Conclusions: Being obese may be protective for all‐cause mortality in the predialysis and hemodialysis populations, while being underweight suggests increased risk, but not in transplant recipients.

KHA-CARI guideline: use of iron in chronic kidney disease patients

a. That therapeutic iron be used to correct diagnosed iron deficiency (1D). b. Parenteral iron (intravenous) is administered in preference to oral iron to correct iron deficiency. As it is more likely to: • achieve target haemoglobin (Hb) levels (1B), • maintain ferritin and transferrin saturation (%TSAT) at target ranges (1C), • reduce erythropoiesis stimulating agent (ESA) dose requirements (1C) and • have fewer adverse reactions (1C).

Global systematic review of the cost-effectiveness of indigenous health interventions

Abstract Background Indigenous populations around the world have consistently been shown to bear a greater burden of disease, death and disability than their non-Indigenous counterparts. Despite this, little is known about what constitutes cost-effective interventions in these groups. The objective of this paper was to assess the global cost-effectiveness literature in Indigenous health to identify characteristics of successful and unsuccessful interventions and highlight areas for further research. Methods and Findings A systematic review of the published literature was carried out. MEDLINE, PSYCINFO, ECONLIT, EMBASE and CINAHL were searched with terms to identify cost-effectiveness evaluations of interventions in Indigenous populations around the world. The WHO definition was followed in identifying Indigenous populations. 19 studies reporting on 27 interventions were included in the review. The majority of studies came from high-income nations with only two studies of interventions in low and middle-income nations. 22 of the 27 interventions included in the analysis were found to be cost-effective or cost-saving by the respective studies. There were only two studies that focused on Indigenous communities in urban areas, neither of which was found to be cost-effective. There was little attention paid to Indigenous conceptions of health in included studies. Of the 27 included studies, 23 were interventions that specifically targeted Indigenous populations. Outreach programs were shown to be consistently cost-effective. Conclusion The comprehensive review found only a small number of studies examining the cost-effectiveness of interventions into Indigenous communities around the world. Given the persistent disparities in health outcomes faced by these populations and commitments from governments around the world to improving these outcomes, it is an area where the health economics and public health fields can play an important role in improving the health of millions of people.

Rationing scarce organs for transplantation: healthcare provider perspectives on wait-listing and organ allocation

Ongoing debate about how to maximize the benefit of scarce organs while maintaining equity of access to transplantation exists. This study aims to synthesize healthcare provider perspectives on wait‐listing and organ allocation. MEDLINE, Embase, and PsycINFO were searched till February 21, 2011. Quantitative data were extracted, and a qualitative synthesis of the studies was conducted. Twenty studies involving 4254 respondents were included. We identified two goals underpinning healthcare provider preferences for organ allocation: (i) maximize clinical benefit (quality of life gains, patient survival, treatment adherence, and graft survival) and social outcomes (social support, productivity, and valuation); (ii) achieve equity (waiting time, patient preferences, access to live donation, and medical urgency). Maximizing clinical or social outcomes meant organs would be preferentially given to patients expected to achieve good transplant outcomes or wider social gain. Achieving equity meant all patients should have an equal chance of transplant, or patients deemed more urgent receive higher priority. A tension between equity and efficiency is apparent. Balanced against dimensions of efficiency were considerations to instill a degree of perceived fairness in organ allocation. Ongoing engagement with stakeholders is needed to enhance transparency, a reasonable balance between efficiency and equity, and avoid discrimination against specific populations.

Developing a Sustainable Model of Oral Health Care for Disadvantaged Aboriginal People Living in Rural and Remote Communities in NSW, Using Collective Impact Methodology

A sustainable model of oral health care for disadvantaged Aboriginal people living in rural and remote communities in New South Wales was developed using collective impact methodology. Collective impact is a structured process which draws together organizations to develop a shared agenda and design solutions which are jointly resourced, measured and reported upon.

Community preferences for the allocation of deceased donor organs for transplantation: a focus group study

BACKGROUND Solid organ transplantation is the treatment of choice for those with organ failure, but suitable organs are a limited community resource. Little is known about community preferences for the allocation of those organs. We aimed to determine community preferences for organ allocation and reasons for their choices. METHODS Participants were recruited from the community in four states in Australia. In focus groups, they identified and discussed attributes that they believed were important for allocating organs to potential recipients. Transcripts were analysed thematically. RESULTS Thirteen focus groups with 114 participants were conducted. Four major themes emerged: (i) saving and improving the lives; (ii) lowering the risk of lost opportunities; (iii) fairness and (iv) accountability. While happy to discuss general principles, many were not comfortable making organ allocation decisions and were happy to defer to health professionals; this reticence tended to disappear when discussing the use of their own organs. CONCLUSIONS Participants wanted to save as many lives as possible as well as lower the risk of lost opportunities for those on the waiting list by maximizing the chances of success of every donation. A rational utilitarian ethical model of organ allocation, therefore, appeared to be the dominant framework adopted by the community. Key considerations were compatibility, high chance of peri-operative survival and favouring those with positive lifestyle and self-management choices. Communication between the transplant community and general community about organ allocation could be undertaken to create trust and shared understanding, which may ultimately increase organ donation rates in the future.