EXPloring attitudes and factors influencing reproductive Choices in kidney Transplant patients (The EXPECT-study).

Pregnancy can have risks after kidney transplantation (KT). This mixed-methods study aimed to identify the percentage of women getting pregnant after KT and explore motives for and against pregnancy together with psychosocial and medical factors involved in decision making. Furthermore, experiences of pregnancy and child-raising were explored. Women who got pregnant after KT were matched with women who had not been pregnant after KT. Semi-structured interviews were conducted, transcribed verbatim and analyzed using directed content analysis. After KT, only 12% of women got pregnant. Eight women with pregnancies after KT were included (P-group) and matched with 12 women who had not been pregnant after KT (NP-group). Women after KT experienced a high threshold to discuss their pregnancy wish with their nephrologist. The nephrologists' advice played an important role in decision-making, but differed between the groups. In the P-group, a desire for autonomy and positive role models were decisive factors in proceeding with their pregnancy wish. In the NP-group, disease burden and risk perception were decisive factors in not proceeding with their pregnancy. Nephrologists need to be proactive in broaching this subject and aware of factors influencing the decision and outcomes. Standardized preconception guidelines on pregnancy counseling are recommended.

Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: a pilot study.

BACKGROUND: To support effective self-management after kidney transplantation, a holistic nurse-led self-management support intervention was developed using the Intervention Mapping approach. The primary aim was to evaluate the feasibility, acceptability and fidelity of the intervention for kidney transplant recipients and professionals. The secondary aim was to explore preliminary effects on outcomes. METHODS: A pilot study was conducted in 2015-2017 to evaluate the intervention. Nurse Practitioners (NP) guided recipients in assessing 14 life areas using the Self-Management Web. Participants were supported in developing self-regulation skills which can be applied to self-management of the illness. Strategies included goal setting, action planning, and promotion of motivation and self-efficacy. Adult recipients from an outpatient clinic of a Dutch University Hospital who underwent their transplant at least 1 month ago, were invited to participate. NPs, nephrologists and recipients were interviewed to assess feasibility, fidelity and implementation experience. Consultations were videoed and analysed to assess fidelity. To assess the preliminary effects, the intervention group completed baseline (T0) and follow-up (T1) questionnaires on self-management behavior, self-efficacy, quality of life and quality of care. A historical control group of kidney transplant recipients completed the same questionnaires at T1. RESULTS: Twenty-seven recipients agreed to participate in the intervention group, of which 24 completed the intervention and 16 completed baseline and follow-up surveys. The control group consisted of 33 recipients. Professionals and recipients appraised the open, holistic focus of the intervention as a welcome addition to standard care and felt that this helped to build a relationship of trust. Recipients also felt they became more competent in problem-solving skills. The within-group analysis showed no significant increase in patients' self-management skills. The between-groups analysis showed significantly higher medication adherence among the intervention group (P = 0.03; G = 0.81). The within-groups analysis showed a significantly higher perceived quality of care (P = 0.02) in the intervention group. CONCLUSION: This holistic nurse-led self-management support intervention was found to be feasible and acceptable by professionals and recipients alike. This pilot had a small sample therefore further research is needed into the potential effects on self-management behavior and well-being of transplant recipients. ISRCTN Trial Registry: ISRCTN15057632 (registered retrospectively on 20-07-2018).

The impact of the donors' and recipients' medical complications on living kidney donors' mental health.

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.

Predicting mental health after living kidney donation: The importance of psychological factors.

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.

Discrepancies between beliefs and behavior: a prospective study into immunosuppressive medication adherence after kidney transplantation.

BACKGROUND: Nonadherence to immunosuppressive medication after kidney transplantation is a behavioral issue and as such it is important to understand the psychological factors that influence this behavior. The aim of this study was to investigate the extent to which goal cognitions, illness perceptions, and treatment beliefs were related to changes in self-reported immunosuppressive medication adherence up to 18 months after transplantation. METHODS: Interviews were conducted with patients in the outpatient clinic 6 weeks (T1; n=113), 6 months (T2; n=106), and 18 months (T3; n=84) after transplantation. Self-reported adherence was measured using the Basel Assessment of Adherence to Immunosuppressive Medications Scale Interview. Psychological concepts were measured using the Brief Illness Perceptions Questionnaire, Beliefs about Medicines Questionnaire, and questions on the importance of adherence as a personal goal, conflict with other goals, and self-efficacy for goal attainment. RESULTS: Nonadherence significantly increased over time to 31% at T3. Perceived necessity of medication, perceived impact of transplant on life (consequences) and emotional response to transplantation significantly decreased over time. Participants who reported low importance of medication adherence as a personal goal were more likely to become nonadherent over time. CONCLUSIONS: Illness perceptions can be described as functional and supportive of adherence which is inconsistent with the pervasive and increasing nonadherence observed. There appears therefore to be a discrepancy between beliefs about adherence and actual behavior. Promoting (intrinsic) motivation for adherence goals and exploring the relative importance in comparison to other personal goals is a potential target for interventions.

Attitudes to medication after kidney transplantation and their association with medication adherence and graft survival: a 2-year follow-up study.

Background. Nonadherence to medication is a common problem after kidney transplantation. The aim of this study was to explore attitudes towards medication, adherence, and the relationship with clinical outcomes. Method. Kidney recipients participated in a Q-methodological study 6 weeks after transplantation. As a measure of medication adherence, respondents completed the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS(©)-interview). Moreover, the intrapatient variability in the pharmacokinetics of tacrolimus was calculated, which measures stability of drug intake. Data on graft survival was retrieved from patient records up to 2 years after transplantation. Results. 113 renal transplant recipients (19-75 years old) participated in the study. Results revealed three attitudes towards medication adherence-attitude 1: "confident and accurate," attitude 2: "concerned and vigilant," and attitude 3: "appearance oriented and assertive." We found association of attitudes with intrapatient variability in pharmacokinetics of tacrolimus, but not with self-reported nonadherence or graft survival. However, self-reported nonadherence immediately after transplantation was associated with lower two-year graft survival. Conclusion. These preliminary findings suggest that nonadherence shortly after kidney transplantation may be a risk factor for lower graft survival in the years to follow. The attitudes to medication were not a risk factor.

The role of goal cognitions, illness perceptions and treatment beliefs in self-reported adherence after kidney transplantation: a cohort study.

OBJECTIVE: Nonadherence to immunosuppressive medication (IM) after kidney transplantation is related to poorer patient and graft outcomes; therefore research into modifiable factors associated with nonadherence is a priority. In this prospective cohort study we investigated whether changes in goal cognitions, illness perceptions, and treatment beliefs were related to self-reported medication adherence six months after kidney transplantation. METHODS: Interviews were conducted with patients in the out-patient clinic six weeks (T1: n=113) and six months (T2: n=106) after transplantation. Self-reported adherence was measured using the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS© Interview). The Brief Illness Perceptions Questionnaire, Beliefs about Medicines Questionnaire and questions on goal cognitions were also administered at both time points. RESULTS: Self-reported nonadherence increased significantly between 6 weeks and 6 months after transplantation from 17% to 27%. Importance of medication adherence as a personal goal and self-efficacy to successfully carry out this goal decreased significantly over time. Perceived necessity of immunosuppressive medication was high but significantly decreased over time. Concerns about the medicines were low. There were no significant changes in illness perceptions or concerns over time. An increase in perceived graft longevity (timeline) was related to higher likelihood of nonadherence six months post-transplant. Furthermore, younger adult patients were more likely to be nonadherent six months after transplantation. CONCLUSION: The self-reported nonadherence levels found in this study so soon after transplantation demonstrate the need for early and continued intervention after kidney transplantation in order to maximise adherence and consequently clinical outcomes. Changes in (unrealistic) beliefs regarding the longevity of the graft may offer a potential target for intervention among nonadherent patients.