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The Netherlands was the first European country to implement unspecified kidney donation in 2000. This qualitative study aimed to evaluate the experiences of unspecified kidney donors (UKDs) in our transplant institute to improve the care for this valuable group of donors. We conducted semi-structured interviews with 106 UKDs who donated between 2000-2016 (response rate 84%). Interviews were audio-recorded, transcribed verbatim and independently coded by 2 researchers in NVivo using thematic analysis. The following 14 themes reflecting donor experiences were found: Satisfaction with donation; Support from social network; Interpersonal stress; Complaints about hospital care; Uncertainty about donor approval; Life on hold between approval and actual donation; Donation requires perseverance and commitment; Recovery took longer than expected; Normalization of the donation; Becoming an advocate for living kidney donation; Satisfaction with anonymity; Ongoing curiosity about outcome or recipient; Importance of anonymous communication; Anonymity is not watertight. The data reinforced that unspecified kidney donation is a positive experience for donors and that they were generally satisfied with the procedures. Most important complaints about the procedure concerned the length of the assessment procedure and the lack of acknowledgment for UKDs from both their recipients and health professionals. Suggestions are made to address the needs of UKDs.
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Transplante de Rim , Doadores Vivos , Humanos , Transplante de Rim/métodos , Rim , Coleta de Tecidos e Órgãos , Pesquisa QualitativaRESUMO
OBJECTIVES: Unspecified donors give a kidney to a stranger with end-stage kidney failure. There has been little research on the long-term impact of unspecified donation on mental health outcomes. The aim of this study was to assess the positive and negative aspects of mental health among unspecified donors. DESIGN: We invited all unspecified donors who donated a kidney between 2000 and 2016 at our centre to participate in an interview and to complete validated questionnaires. METHODS: We measured positive mental health using the Dutch Mental Health Continuum-Short Form (MHC-SF), psychological complaints using the Symptoms Checklist-90 (SCL-90) and psychiatric diagnoses using the Mini-International Neuropsychiatric Interview (M.I.N.I.) Screen for all donors and the M.I.N.I. Plus on indication. RESULTS: Of the 134 eligible donors, 114 participated (54% female; median age 66 years), a median of 6 years post-donation. Scores on emotional and social well-being subscales of the MHC-SF were significantly higher than in the general population. Psychological symptoms were comparable to the general population. Thirty-two per cent of donors had a current or lifetime psychiatric diagnosis. Psychological symptoms did not significantly change between the pre-donation screening and the post-donation study. CONCLUSIONS: We concluded that, with the appropriate screening, unspecified donation is a safe procedure from a psychological perspective.
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Transplante de Rim , Saúde Mental , Idoso , Estudos de Coortes , Feminino , Humanos , Rim , Transplante de Rim/psicologia , Doadores Vivos/psicologia , Masculino , Qualidade de Vida/psicologiaRESUMO
Live donor kidney transplantation (LDKT) is the optimal treatment modality for end stage renal disease (ESRD), enhancing patient and graft survival. Pre-emptive LDKT, prior to requirement for renal replacement therapy (RRT), provides further advantages, due to uraemia and dialysis avoidance. There are a number of potential barriers and opportunities to promoting pre-emptive LDKT. Significant infrastructure is needed to deliver robust programmes, which varies based on socio-economic standards. National frameworks can impact on national prioritisation of pre-emptive LDKT and supporting education programmes. Focus on other programme's components, including deceased kidney transplantation and RRT, can also hamper uptake. LDKT programmes are designed to provide maximal benefit to the recipient, which is specifically true for pre-emptive transplantation. Health care providers need to be educated to maximize early LDKT referral. Equitable access for varying population groups, without socio-economic bias, also requires prioritisation. Cultural barriers, including religious influence, also need consideration in developing successful outcomes. In addition, the benefit of pre-emptive LDKT needs to be emphasised, and opportunities provided to potential donors, to ensure timely and safe work-up processes. Recipient education and preparation for pre-emptive LDKT needs to ensure increased uptake. Awareness of the benefits of pre-emptive transplantation require prioritisation for this population group. We recommend an approach where patients approaching ESRD are referred early to pre-transplant clinics facilitating early discussion regarding pre-emptive LDKT and potential donors for LDKT are prioritized for work-up to ensure success. Education regarding pre-emptive LDKT should be the norm for patients approaching ESRD, appropriate for the patient's cultural needs and physical status. Pre-emptive transplantation maximize benefit to potential recipients, with the potential to occur within successful service delivery. To fully embrace preemptive transplantation as the norm, investment in infrastructure, increased awareness, and donor and recipient support is required.
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BACKGROUND: Most transplantation centers recognize a small patient population that unsuccessfully participates in all available, both living and deceased donor, transplantation programs for many years: the difficult-to-match patients. This population consists of highly immunized and/or ABO blood group O or B patients. METHODS: To improve their chances, Computerized Integration of Alternative Transplantation programs (CIAT) were developed to integrate kidney paired donation, altruistic/unspecified donation, and ABO and HLA desensitization. To compare CIAT with reality, a simulation was performed, including all patients, donors, and pairs who participated in our programs in 2015-2016. Criteria for inclusion as difficult-to-match, selected-highly immunized (sHI) patient were as follows: virtual panel reactive antibody >85% and participating for 2 years in Eurotransplant Acceptable Mismatch program. sHI patients were given priority, and ABO blood group incompatible (ABOi) and/or HLA incompatible (HLAi) matching with donor-specific antigen-mean fluorescence intensity (MFI) <8000 were allowed. For long-waiting blood group O or B patients, ABOi matches were allowed. RESULTS: In reality, 90 alternative program transplantations were carried out: 73 compatible, 16 ABOi, and 1 both ABOi and HLAi combination. Simulation with CIAT resulted in 95 hypothetical transplantations: 83 compatible (including 1 sHI) and 5 ABOi combinations. Eight sHI patients were matched: 1 compatible, 6 HLAi with donor-specific antigen-MFI <8000 (1 also ABOi), and 1 ABOi match. Six/eight combinations for sHI patients were complement-dependent cytotoxicity cross-match negative. CONCLUSIONS: CIAT led to 8 times more matches for difficult-to-match sHI patients. This offers them better chances because of a more favorable MFI profile against the new donor. Besides, more ABO compatible matches were found for ABOi couples, while total number of transplantations was not hampered. Prioritizing difficult-to-match patients improves their chances without affecting the chances of regular patients.
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Sistema ABO de Grupos Sanguíneos/imunologia , Incompatibilidade de Grupos Sanguíneos/imunologia , Técnicas de Apoio para a Decisão , Seleção do Doador , Antígenos HLA/imunologia , Histocompatibilidade , Transplante de Rim , Obtenção de Tecidos e Órgãos , Adulto , Incompatibilidade de Grupos Sanguíneos/complicações , Incompatibilidade de Grupos Sanguíneos/diagnóstico , Tipagem e Reações Cruzadas Sanguíneas , Tomada de Decisão Clínica , Feminino , Humanos , Transplante de Rim/efeitos adversos , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Medição de Risco , Fatores de Risco , Resultado do TratamentoRESUMO
BACKGROUND: Individuals with benign kidney disorders undergoing nephrectomy have three possibilities: Autotransplantation, with a certain risk of complications, but without a clear benefit; discarding the kidney; or living kidney donation. AIM: To investigate whether patients with benign kidney disorders and a medical indication for nephrectomy are suitable as unspecified live kidney donors. METHODS: We searched all clinical data from 1994-2019 for unspecified donors and their transplant recipients (n = 160). Nine of these 160 donors had pre-existing kidney disorders necessitating nephrectomy and had decided to donate their kidney anonymously after discussing the possibility of kidney donation. We studied the clinical course of these nine donating patients and their transplant recipients. RESULTS: Seven of nine donating patients indicated unbearable loin pain as the main complaint, one donating patient refused ureterocutaneostomy and one had two aneurysms of the renal artery. Postoperatively, seven donating patients described absence of pain and one a significant reduction after the nephrectomy. The average 1-year creatinine level in the donating patients was 88 µmol/L and after a median of 6.9 years the average creatinine level was 86.6 µmol/L. In the transplant recipients, one major complication occurred which led to death and in one transplant recipient graft function failed to normalize at first but has been stable for nine years now. Currently, all transplant recipients are off dialysis. CONCLUSION: Our data show that patients undergoing nephrectomy as part of treatment in selected kidney disorders can function as live kidney donors.
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BACKGROUND: Living donor kidney transplantation (LDKT) is the preferred treatment for patients with end-stage renal disease and unspecified living kidney donation is morally justified. Despite the excellent outcomes of LDKT, unspecified kidney donation (UKD) is limited to a minority of European countries due to legal constraints and moral objections. Consequently, there are significant variations in practice and approach between countries and the contribution of UKD is undervalued. Where UKD is accepted as routine, an increasing number of patients in the kidney exchange programme are successfully transplanted when a 'chain' of transplants is triggered by a single unspecified donor. By expanding the shared living donor pool, the benefit of LDKT is extended to patients who do not have their own living donor because a recipient on the national transplant list always completes the chain. Is there a moral imperative to increase the scope of UKD and how could this be achieved? METHODS: An examination of the literature and individual country practices was performed to identify the limitations on UKD in Europe and recommend strategies to increase transplant opportunities. RESULTS: Primary limitations to UKD, key players and their roles and responsibilities were identified. CONCLUSIONS: Raising awareness to encourage the public to volunteer to donate is appropriate and desirable to increase UKD. Recommendations are made to provide a framework for increasing awareness and engagement in UKD. The public, healthcare professionals, policy makers and society and religious leaders have a role to play in creating an environment for change.
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The increase in patients using public solicitation (PS) to find a living kidney donor has generated a debate about the ethical complexities of PS. To investigate why patients engaged in PS and what they experienced during PS, we conducted semistructured interviews with 20 Dutch patients with end-stage renal disease who had publicly solicited a living donor. Transcripts were thematically analyzed. We identified ten themes on patients' considerations preceding PS: cautiousness in discussing living donation within social network; reluctance to accept a kidney from loved ones; rejection/withdrawal of related donor candidates; moral objections to paid donation; the ease of social media; encouraged by others; ends justifying the means; despair and urge to take action; public disclosure of vulnerability; fear of being (perceived to be) selfish. We identified nine themes on patients' experiences: positive emotions and support generated by action; genuine and ulterior motives for donation; patients acting as educators and screeners; time- and energy-consuming process; emotionally taxing process; positive interactions with donor candidates; feeling of dependency and obligation; limited cooperation from health professionals; demands a proactive attitude and media strategy. These results can inform and complement (existing) policies on PS and provide content for education of patients who are considering PS.
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Transplante de Rim , Doadores Vivos/psicologia , Adulto , Idoso , Feminino , Humanos , Falência Renal Crônica/psicologia , Doadores Vivos/ética , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Maintaining anonymity is a requirement in the Netherlands and Sweden for kidney donation from live donors in the context of nondirected (or unspecified) and paired exchange (or specified indirect) donation. Despite this policy, some donors and recipients express the desire to know one another. Little empirical evidence informs the debate on anonymity. This study explored the experiences, preferences, and attitudes of donors and recipients toward anonymity. STUDY DESIGN: Retrospective observational multicenter study using both qualitative and quantitative methods. SETTING & PARTICIPANTS: 414 participants from Dutch and Swedish transplantation centers who received or donated a kidney anonymously (nondirected or paired exchange) completed a questionnaire about anonymity. Participation was a median of 31 months after surgery. FACTORS: Country of residence, donor/recipient status, transplant type, time since surgery. OUTCOMES: Experiences, preferences, and attitudes toward anonymity. RESULTS: Most participants were satisfied with their experience of anonymity before and after surgery. A minority would have liked to have met the other party before (donors, 7%; recipients, 15%) or after (donors, 22%; recipients, 31%) surgery. Significantly more recipients than donors wanted to meet the other party. Most study participants were open to meeting the other party if the desire was mutual (donors, 58%; recipients, 60%). Donors agree significantly more with the principle of anonymity before and after surgery than recipients. Donors and recipients thought that if both parties agreed, it should be permissible to meet before or after surgery. There were few associations between country or time since surgery and experiences or attitudes. The pros and cons of anonymity reported by participants were clustered into relational and emotional, ethical, and practical and logistical domains. LIMITATIONS: The relatively low response rate of recipients may have reduced generalizability. Recall bias was possible given the time lag between transplantation and data collection. CONCLUSIONS: This exploratory study illustrated that although donors and recipients were usually satisfied with anonymity, the majority viewed a strict policy on anonymity as unnecessary. These results may inform policy and education on anonymity.
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Anonimização de Dados , Transplante de Rim , Doadores Vivos , Coleta de Tecidos e Órgãos , Transplantados , Adulto , Atitude , Anonimização de Dados/ética , Anonimização de Dados/psicologia , Família/psicologia , Feminino , Humanos , Transplante de Rim/ética , Transplante de Rim/métodos , Transplante de Rim/estatística & dados numéricos , Doadores Vivos/psicologia , Doadores Vivos/estatística & dados numéricos , Masculino , Países Baixos , Satisfação Pessoal , Informações Pessoalmente Identificáveis , Opinião Pública , Suécia , Coleta de Tecidos e Órgãos/ética , Coleta de Tecidos e Órgãos/métodos , Coleta de Tecidos e Órgãos/psicologia , Transplantados/psicologia , Transplantados/estatística & dados numéricosRESUMO
Anonymity between living donors and recipients is a topic of discussion among transplant professionals. This longitudinal study explored living kidney donors' and patients' perspectives on anonymity. Prior to surgery (T0) and 3 months afterward (T1), participants in unspecified or specified indirect donation programs completed a questionnaire on their experiences with and attitudes toward anonymity as well as demographic and medical characteristics. Nonparametric tests were used to assess group differences and associations. Participants were content with anonymity at T0 and T1. Fourteen and 23% wanted to meet at T0 and T1, respectively. If the other party expressed the wish to meet, 50% (T0) and 55% (T1) would be willing to meet. Most participants agreed that meeting should be allowed if both parties agree. Attitude toward anonymity did not differ between donors/recipients, nor between T0/T1 and unspecified/specified indirect donation programs. This study showed that most donors and recipients who participated in anonymous donation schemes are in favor of a conditional approach to anonymity. Guidelines on how to revoke anonymity if both parties agree are needed and should include education about pros and cons of (non-) anonymity and a logistical plan on how, when, where, and by whom anonymity should be revoked.
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Confidencialidade/psicologia , Transplante de Rim/métodos , Doadores Vivos/psicologia , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos/métodos , Transplantados/psicologia , Adulto , Idoso , Distribuição de Qui-Quadrado , Confidencialidade/ética , Feminino , Humanos , Transplante de Rim/ética , Doadores Vivos/ética , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Países Baixos , Estatísticas não Paramétricas , Adulto JovemRESUMO
A minority of living kidney donors (between 5-25%) have poor psychological outcomes after donation. There is mixed evidence on the influence of medical complications on these outcomes. We examined whether medical complications among donors and recipients predicted changes in donors' mental health (psychological symptoms and well-being) between predonation and 1 year postdonation. One-hundred and forty-five donors completed questionnaires on mental health predonation and 3 and 12 months postdonation. Number of recipient rehospitalizations and donor complications (none; minor; or severe) were obtained from medical records at 3 and 12 months after surgery. Multilevel regression analyses were used to examine the association between medical complications and changes in donors' mental health over time after controlling for sociodemographic characteristics. We found that donor complications (P = 0.003) and recipient rehospitalizations (P = 0.001) predicted an increase in donors' psychological symptoms over time. Recipient rehospitalizations also predicted a decrease in well-being (P = 0.005) over time; however, this relationship became weaker over time. We conclude that medical complications experienced by either the donor or recipient is a risk factor for deterioration in donors' mental health after living kidney donation. Professionals should monitor donors who experience medical complications and offer additional psychological support when needed.
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Transplante de Rim , Doadores Vivos/psicologia , Transtornos Mentais/complicações , Saúde Mental , Nefrectomia/psicologia , Insuficiência Renal/cirurgia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Complicações Pós-Operatórias , Qualidade de Vida , Análise de Regressão , Fatores de Risco , Autoimagem , Inquéritos e Questionários , Coleta de Tecidos e Órgãos , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: Living donor kidney transplantation offers advantages to the patient, however involves risks to the donor. To optimize donors' mental health after donation, we studied the influence of psychological factors on this outcome. Potential predictors were based on models of Lazarus () and Ursin and Eriksen () that describe predictors of mental health mediated by stress. DESIGN: Prospective design. METHODS: Living kidney donors (n = 151) were interviewed before donation and completed questionnaires 2.5 months before and 3 and 12 months post-donation. Using multilevel regression models, we examined whether appraisals, expectations, knowledge, social support, coping, life events, and sociodemographic characteristics predicted psychological symptoms and well-being and whether these relationships were mediated by stress. RESULTS: A greater increase in psychological symptoms over time was found among donors without a partner. Younger age, lack of social support, expectations of interpersonal benefit, lower appraisals of manageability, and an avoidant coping style were related to more psychological symptoms at all time points. The latter three were mediated by stress. No religious affiliation, unemployment, history of psychological problems, less social support, expectations of negative health consequences, and less positive appraisals were related to lower well-being at all time points. CONCLUSIONS: This study identified indicators of a lower mental health status among living kidney donors. Professionals should examine this profile before donation and the need for extra psychological support in relation to the number and magnitude of the identified indicators. Interventions should be focused on the changeable factors (e.g., expectations), decreasing stress/psychological symptoms, and/or increasing well-being. Statement of contribution What is already known on this subject? Until now, research on psychological outcomes after living kidney donation revealed that mental health remained the same for the majority of living kidney donors, while mental health improved or deteriorated for a minority after donation. In reaction to these findings, many psychosocial screening guidelines have been developed for potential donors; however, the components of these guidelines are based on professional opinions and experience rather than on longitudinal empirical data. There is a lack of research that identifies pre-donation donor characteristics that are related to a lower mental health among donors. Such studies are essential in order to tailor psychosocial support during the donation process. What does this study add? Components that are mostly included in psychosocial screening guidelines for potential living kidney donors are not predictive of deterioration, nor increase, in mental health after donation, except for the lack of a partner. Therefore, there is little evidence on the necessity of rejecting potential donors based on these psychological criteria. The following psychological risk factors are predictive of the absolute level of donors' mental health during the donation process: A history of psychological problems, expectations of interpersonal benefit and negative health outcomes, an avoidant coping style, lack of social support, appraisals of the donation process as an unmanageable and/or negative event, a younger age, no religious affiliation, and unemployment. We argue that potential donors should not be rejected for donation based on these factors, but the indicators should be used to identify donors who might be in need for more psychological support.
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Transplante de Rim/psicologia , Doadores Vivos/psicologia , Saúde Mental/estatística & dados numéricos , Complicações Pós-Operatórias/psicologia , Estresse Psicológico/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Transplante de Rim/estatística & dados numéricos , Doadores Vivos/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Países Baixos , Estudos Prospectivos , Apoio Social , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: The aim was to test the effectiveness of early home-based group education on knowledge and communication about renal replacement therapy (RRT). METHODS: We conducted a randomized controlled trial using a cross-over design among 80 end-stage renal disease (ESRD) patients. Between T0 and T1 (weeks 1-4) Group 1 received the intervention and Group 2 received standard care. Between T1 and T2 (weeks 5-8) Group 1 received standard care and Group 2 received the intervention. The intervention was a group education session on RRT options held in the patient's home given by social workers. Patients invited members from their social network to attend. Self-report questionnaires were used at T0, T1 and T2 to measure patients' knowledge and communication, and concepts from the Theory of Planned Behaviour such as attitude. Comparable questionnaires were completed pre-post intervention by 229 attendees. Primary RRT was registered up to 2 years post-intervention. Multilevel linear modelling was used to analyse patient data and paired t-tests for attendee data. RESULTS: Statistically significant increases in the primary targets knowledge and communication were found among patients and attendees after receiving the intervention. The intervention also had a significant effect in increasing positive attitude toward living donation and haemodialysis. Of the 80 participants, 49 underwent RRT during follow-up. Of these, 34 underwent a living donor kidney transplant, of which 22 were pre-emptive. CONCLUSIONS: Early home-based group education supports informed decision-making regarding primary RRT for ESRD patients and their social networks and may remove barriers to pre-emptive transplantation.
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Tomada de Decisões , Intervenção Educacional Precoce , Serviços de Assistência Domiciliar , Falência Renal Crônica/terapia , Educação de Pacientes como Assunto , Diálise Renal/psicologia , Terapia de Substituição Renal/métodos , Comunicação , Estudos Cross-Over , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Terapia de Substituição Renal/psicologia , Inquéritos e QuestionáriosRESUMO
Donor-recipient ABO and/or HLA incompatibility used to lead to donor decline. Development of alternative transplantation programs enabled transplantation of incompatible couples. How did that influence couple characteristics? Between 2000 and 2014, 1232 living donor transplantations have been performed. In conventional and ABO-incompatible transplantation the willing donor becomes an actual donor for the intended recipient. In kidney-exchange and domino-donation the donor donates indirectly to the intended recipient. The relationship between the donor and intended recipient was studied. There were 935 conventional and 297 alternative program transplantations. There were 66 ABO-incompatible, 68 domino-paired, 62 kidney-exchange, and 104 altruistic donor transplantations. Waiting list recipients (n = 101) were excluded as they did not bring a living donor. 1131 couples remained of whom 196 participated in alternative programs. Genetically unrelated donors (486) were primarily partners. Genetically related donors (645) were siblings, parents, children, and others. Compared to genetically related couples, almost three times as many genetically unrelated couples were incompatible and participated in alternative programs (P < 0.001). 62% of couples were genetically related in the conventional donation program versus 32% in alternative programs (P < 0.001). Patient and graft survival were not significantly different between recipient programs. Alternative donation programs increase the number of transplantations by enabling genetically unrelated donors to donate.
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With the recent transposition of Directive 2010/53/EU into the transplant regulation of EU Member States, the time is right to have a closer look at its implications for living organ donation practice. We first discuss the relevance of the Action Plan which forms the basis for the policy of the European Commission in the field of organ donation and transplantation. We then analyze the impact of Directive 2010/53/EU which was adopted to support the implementation of the Priority Actions set out in the Action Plan. We more specifically focus on the obligations of transplant centers engaged in living organ donation and highlight their significance for clinical practice. Finally, we point out some strengths and weaknesses of the Directive in addressing living organ donation.
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Doadores Vivos , Transplante de Órgãos/métodos , Obtenção de Tecidos e Órgãos/métodos , Confidencialidade , Ética Médica , União Europeia , Humanos , Transplante de Órgãos/legislação & jurisprudência , Segurança do Paciente , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde , Obtenção de Tecidos e Órgãos/legislação & jurisprudênciaRESUMO
Although transplant professionals have initially been reluctant to perform transplants after public solicitation of organs from living donors, nowadays these transplants are increasingly being performed and reported. After clarifying the existing terminology, we elaborate an operational definition of public solicitation that is consistent with the Ethical, Legal, and Psychosocial Aspects of Transplantation classification for living organ donation. Our aim is to critically assess this phenomenon, from a legal, moral, and practical perspective, and to offer some recommendations. From a legal point of view, we analyze the current situation in the Europe and the United States. From a moral perspective, we evaluate the various arguments used in the literature, both in favor and against. Finally, we offer a set of recommendations aimed at maximizing the organ donor pool while safeguarding the interests of potential living donors.
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Doadores Vivos , Transplante de Órgãos/ética , Transplante de Órgãos/métodos , Transplante de Órgãos/psicologia , Obtenção de Tecidos e Órgãos/ética , Obtenção de Tecidos e Órgãos/métodos , Ética Médica , Europa (Continente) , Humanos , Risco , Estados UnidosRESUMO
BACKGROUND: In order to make a well-considered decision and give informed consent about renal replacement therapy, potential living kidney donors and recipients should have sufficient understanding of the options and risks. PURPOSE: We aimed to explore knowledge about Dialysis & Transplantation (DT) and Living Donation (LD) among prospective living kidney donors and recipients. METHODS: Eighty-five donors and 81 recipients completed the Rotterdam Renal Replacement Knowledge-Test (R3K-T) 1 day before surgery. The questionnaire was available in various languages. RESULTS: Recipients knew significantly more about DT than donors (p < 0.001); donors knew more about LD than recipients (p < 0.001). A minority of donors (15 %) and recipients (17 %) had a score that was comparable to the knowledge level of the naïve general population. Recipients and donors knew less about DT and LD if their native language was not Dutch. In addition, recipients knew less about DT if they were undergoing pre-emptive transplantation. CONCLUSIONS: We conclude that recipients and donors retain different information. The decision to undergo living donation appears to be not always based on full knowledge of the risks. We recommend that professionals assess knowledge of prospective donors and recipients during the education process using the R3K-T, and extra attention is required for non-native speakers.
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Transplante de Rim , Doadores Vivos , Diálise Renal , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Between 2000 and December 2013, 106 live donor nephrectomies from anonymous living-donors were performed at the Erasmus MC Rotterdam; five of the donors (5.4%) had a life-threatening disease. The aim of the present report is to give the rational and justification for this procedure. METHODS: All five donors underwent the national standard living-donor screening procedure. Additionally, motivation to donate and psychologic stability were assessed by a psychologist using in-depth interview techniques and a psychologic complaints questionnaire. Post-donor nephrectomy follow-up consisted of standard questionnaires and clinical check-ups. RESULTS: One patient had cerebral and caudal ependymomas, one had severe and progressive emphysema, two had Huntington's disease and one had a grade 2 oligodendroglioma. The psychologic screening revealed genuine motivation, adequate risk perception, and normal sense of reality. No contraindications for donation were found. The five donor nephrectomies made nine kidney transplantations possible. All donors were satisfied with the donation procedure. Three donors died during follow-up (0.6-4.9 years) as a result of their disease. CONCLUSION: In the absence of apparent additional health risks, medical, and psychologic contraindications, we consider it ethically justified to accept an offer from a cognitively competent patient with a life-threatening disease in view of their self-reported satisfaction during follow-up. Although based on a limited number of patients, we conclude that a stricter psychologic screening for seriously ill donors compared to healthy unspecified anonymous donors to unspecified patients is not necessary.
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Seleção do Doador , Transplante de Rim/métodos , Doadores Vivos/provisão & distribuição , Nefrectomia , Altruísmo , Causas de Morte , Cognição , Seleção do Doador/ética , Feminino , Doações , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Transplante de Rim/ética , Doadores Vivos/ética , Doadores Vivos/psicologia , Masculino , Pessoa de Meia-Idade , Motivação , Nefrectomia/efeitos adversos , Nefrectomia/ética , Países Baixos , Psicometria , Medição de Risco , Fatores de Risco , Índice de Gravidade de Doença , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento , VoliçãoRESUMO
BACKGROUND: This article studies multicenter coordination of unspecified living kidney donation and transplantation across the blood-type barrier in kidney exchange. Important questions are whether such coordination should use domino paired donation or non simultaneous extended altruistic donor chains, what the length of the segments in such chains should be, when they should be terminated, and how much time should be allowed between matching rounds. Furthermore, it is controversial whether the different modalities should be coordinated centrally or locally and independently. METHODS: Kidney exchange policies are simulated using actual data from the Dutch national kidney exchange program. Sensitivity analysis is performed on the composition of the population, the time unspecified and bridge donors wait before donating to the wait list, the time between matching rounds, and donor renege rates. RESULTS: Central coordination of unspecified donation and transplantation across the blood-type barrier can increase transplants by 10% (PG0.001). Especially highly sensitized and blood type O patients benefit. Sufficient time between matching rounds is essential: three-monthly exchanges result in 31% more transplants than weekly exchanges. Benefits of non simultaneous extended altruistic donor chains are limited in case of low numbers of highly sensitized patients and sufficient unspecified donors. Chains are best terminated when no further segment is part of an optimal exchange within 3 months. CONCLUSIONS: There is clear synergy in the central coordination of both unspecified donation and transplantation across the blood-type barrier in kidney exchange. The best configuration of a national program depends on the composition of the patient Y donor population.
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Sistema ABO de Grupos Sanguíneos/imunologia , Incompatibilidade de Grupos Sanguíneos/imunologia , Tipagem e Reações Cruzadas Sanguíneas , Seleção do Doador/organização & administração , Histocompatibilidade , Transplante de Rim , Doadores Vivos/provisão & distribuição , Simulação por Computador , Humanos , Método de Monte Carlo , Países Baixos , Objetivos Organizacionais , Valor Preditivo dos Testes , Fatores de Tempo , Resultado do Tratamento , Listas de EsperaRESUMO
Knowledge is a prerequisite for promoting well-informed decision-making. Nevertheless, there is no validated and standardized test to assess the level of knowledge among renal patients regarding kidney disease and all treatment options. Therefore, the objective of this study was to investigate the psychometric properties of such a questionnaire for use in research and practice. A 30-item list was validated in four groups: (1) 187 patients on dialysis, (2) 82 patients who were undergoing living donor kidney transplantation the following day, (3) the general population of Dutch residents (n = 515) and (4) North American residents (n = 550). The psychometric properties of the questionnaire were examined using multidimensional item response theory (MIRT). Norm references were also calculated. Five items were found to distort ability estimates (Differential item functioning; DIF). MIRT analyses were subsequently carried out for the remaining 25 items. Almost all items showed good discrimination and difficulty parameters based on the fitted model. Two stable dimensions with 21 items were retrieved for which norm references for the Dutch and North American, dialysis and transplantation groups were calculated. This study resulted in a thorough questionnaire, the Rotterdam renal replacement knowledge-test, which enables reliable testing of patient's knowledge on kidney disease and treatment options in clinic and research.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Nefropatias/terapia , Transplante de Rim , Terapia de Substituição Renal , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Psicometria , Inquéritos e Questionários , Estados UnidosRESUMO
BACKGROUND: We have observed a significant inequality in the number of living-donor kidney transplants (LDKT) performed between patients of non-Western European origin and those of Western European origin. The aim of this study was to investigate modifiable factors that could be used as potential targets for an intervention in an attempt to reduce this inequality. METHODS: A questionnaire on knowledge, risk perception, communication, subjective norm, and willingness to accept LDKT was completed by 160 end-stage renal patients who were referred to the pretransplantation outpatient clinic (participation rate of 92%). The questionnaire was available in nine languages. Multivariate analyses of variance were conducted to explore differences between patients with and without a living donor. RESULTS: There were significantly fewer patients of non-Western descent (11 of 82) that brought a living donor to the outpatient clinic than patients of Western descent (38 of 78). After correcting for the unmodifiable sociodemographic factors non-Western descent, low knowledge, little communication about their kidney disease, and low willingness to communicate with individuals from the social network about LDKT were significantly associated with the absence of a living donor. CONCLUSIONS: Knowledge and communication are identified as modifiable factors that are associated with the likelihood of identifying a potential living donor for LDKT. This observation makes knowledge and communication targets for interventions to reduce inequality in access to LDKT.