Leonieke Kranenburg

Encouraging Psychological Outcomes After Altruistic Donation to a Stranger

In a growing number of transplant centers worldwide, altruistic donors are accepted to anonymously donate a kidney to a stranger. An important hesitation to expand these transplantation programs is the fear of evoking psychological distress in the altruistic donor after donation. To what extent this fear is justified has not yet been systematically investigated. In this study, 24 altruistic donors were interviewed on average 2 years after donation. Lifetime mental health history, current psychological complaints, satisfaction with and impact of the donation on well‐being, motives for donation, communication with recipient and donation experience were assessed. Altruistic donors report a considerable positive impact of donation on psychological well‐being, whereas negative impact was limited. Satisfaction with donation was very high. Although a history of a psychiatric diagnosis was ascertained in almost half of the donors, psychological complaints before and after donation were comparable to national average norm scores. Motives for donation were genuine and the experience of donation generally conformed to their expectations. In conclusion, living kidney donation to a stranger does not appear to exacerbate psychological complaints. Moreover, altruistic donors report considerable satisfaction and personal benefit. The exceptional gift of altruistic donors can contribute toward solving the current organ shortage issue.

Psychological barriers for living kidney donation: how to inform the potential donors?

Background. This is the first large-scale interview study carried out in patients and potential donors who seem unwilling or unable to pursue living kidney donation. By investigating these groups, we explored whether further expansion of the living kidney donation program is feasible. Methods. We interviewed 91 patients on the waiting list for a kidney transplant who did not pursue living kidney donation and their potential donors (n=53). We also included a comparison group. All respondents underwent an in-depth interview by a psychologist about topics that could influence their willingness to pursue living kidney donation. Results. A total of 78% of the patients on the waiting list were willing to accept the offer of a living donor. The main reason for not pursuing living kidney donation was reluctance to discuss the issue with the potential donors. This was also found in the comparison group. Both groups indicated that if there was no donor offer, they tended to interpret this as a refusal to donate. This interpretation not always holds: more than one third (19 of 53) of the potential donors were open to consider themselves as a potential donor. On the other hand, a comparably sized group of potential donors (21 of 53) was reluctant about donation. The main reason for donor reluctance was fear for their health after donation. Conclusion. The majority of patients on the waiting list are willing to accept a living kidney donor, but adopt an awaiting attitude towards their potential donors. Offering those patients professional assistance should be considered.

Avoiding the issue: Patients' (non)communication with potential living kidney donors

OBJECTIVE Kidney transplantation with a living donor has proved to be an effective solution for kidney patients on the waiting list for transplantation. Nevertheless, it may be difficult to find a living kidney donor. The purpose of this explorative study is to investigate how kidney transplant candidates may, or may not, find a living donor in the Netherlands. METHODS We compared a group of 42 patients who did not find a living donor with a group of 42 patients who did, using semi-structured interviews. RESULTS We found that, although almost all patients recognized the advantages of living kidney donation and were willing to accept the offer of a living kidney donor, many found it very difficult to ask a potential donor directly. This was true for both groups. CONCLUSION Patients may gain from professional support to deal with this situation in ways that balance their medical needs and their personal relationships. PRACTICE IMPLICATIONS Support programs should be developed to assist patients in developing strategies for discussing living kidney donation with potential donors.

Psychologic functioning of unspecified anonymous living kidney donors before and after donation.

Background There has been discussion regarding the psychologic functioning of living donors who donate their kidney to an unrelated and unknown patient (“unspecified living donors”). This is the first prospective study to investigate group- and individual-level changes in psychologic functioning among a large group of unspecified donors. Methods Forty-nine medically and psychologically screened unspecified living kidney donors completed the Symptom Checklist before and after donation. Results Group-level analysis showed that overall psychologic symptoms increased after donation (P=0.007); the means remained within the average range of the normal population. Individual-level analysis showed that 33 donors showed no statistically significant change, 3 donors showed a statistically significant decrease, and 13 donors showed a statistically significant increase in psychologic symptoms. Two of the latter donors showed a clinically significant increase. Conclusions We found more increases in psychologic symptoms than decreases, particularly if follow-up time was longer. However, for almost all donors, these increases were not clinically significant and the clinically significant changes found are comparable with natural fluctuations in psychologic symptoms in the general population. Possibly, the donors underreported their psychologic symptoms before donation to pass the screening. Due to the low level of predonation symptoms reported, regression to the mean could also explain the results. Although we found that changes were not associated with donation-related factors, it is possible that other donation-related factors or other life events not measured have an influence on psychologic functioning. Therefore, further research is needed to investigate whether the fluctuations are related to the donation process.

Should health care professionals encourage living kidney donation

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that active interference in peoples’ personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples’ personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin’s model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel’s representation of the particularistic position.

Incentives for living kidney donation: What does the public think?

This mini-review describes a number of recent surveys that have been performed to study public opinion on the idea of introducing incentives for living kidney donation. The results of these surveys are comparable: about a quarter of the population is in favor of this idea, whereas the majority is opposed or undecided.

Postmortal or living related donor: preferences of kidney patients. Authors’ reply

We studied the willingness and motives for accepting a living kidney donation in 61 kidney patients on the waiting list by a semistructured interview and a questionnaire on two occasions. Between both moments of measurement patients received general information on transplantation options. We tested whether demographic data, medical status data or quality of life correlated with treatment choice. Our results showed that 61% of the patients preferred living kidney donation to postmortal donation. Their main motivation for this choice was the better quality of the living kidney. The most often named reasons to choose postmortal donation were unwillingness to burden a loved one and fear of psychological problems in relation to the donor after transplantation. There was no statistical significant change of preference between both moments of measurement; however there seemed to be a tendency in favor of living kidney donation. Fewer years spent on renal replacement therapy correlated statistically significant with the choice for living kidney donation. These findings encourage the development of new strategies to facilitate the living kidney donation program, and confirm the need for the standard option of psychosocial support for patients.

Effects of clinical parameters on patient-reported outcome in cataract patients: A multicentre study

Ophthalmologists tend to evaluate the results of cataract surgery by focusing on the clinical visual and refractive outcomes and the incidence of complications, where patients’ main interest might be their ability to perform daily activities. Therefore, there appears to be a need for optimizing effective communication between patients and ophthalmologist about the outcome of cataract surgery. The aim of this multicentre study was to determine the effects of whether the surgery was performed in one or two eyes, ocular comorbidity and per‐ and postoperative complications on visual function experienced by patients measured with the Catquest‐9SF.

“The validity of the EQ-5D-5L in measuring quality of life benefits of breast reconstruction”

BACKGROUND The EuroQol EQ-5D-5L instrument is the most widely used quality of life (QoL) measure in health economic evaluations. It is unclear whether such a generic instrument is valid enough to estimate the benefits of breast reconstruction (BR), given the specific changes observed in QoL after BR. Hence, we aimed to evaluate the validity of the EQ-5D-5L in patients who had undergone postmastectomy BR. METHODS In a 10-year cross-sectional cohort study, 463 mastectomy patients completed an online survey: 202 patients with autologous-BR (A-BR), 103 with implant-based-BR (I-BR), and 158 without BR (MAS). The results were used to evaluate the psychometric performance of the EQ-5D-5L with respect to the ceiling effect and to known-group, convergent, and discriminant validity, by comparing it with the Breast-Q, the cancer-specific (EORTC-QLQ-C30), and breast cancer-specific (EORTC-QLQ-BR23) questionnaires. RESULTS The EQ-5D-5L was able to discriminate between patients with and without complications, MAS with or without BR and MAS versus the general population. It was, however, not able to discriminate between A-BR vs. I-BR as well as BR vs. general population. It is not clear whether this was due to the insensitivity of the instrument, insufficient sample sizes, or because there were no actual differences in QoL between these groups. Good convergent and discriminant validity of both the EQ-5D-5L and its individual dimensions were demonstrated. Additional support for the instruments validity was revealed by moderate correlations between the generic EQ-5D-5L and specific QoL aspects of BR such as sexuality and body image. CONCLUSIONS The results of this study support the validity of the EQ-5D-5L as an outcome measure in health economic evaluations of BR.