Combining transplant professional's psychosocial donor evaluation and donor self-report measures to optimise the prediction of HRQoL after kidney donation: an observational prospective multicentre study.

OBJECTIVES: Living donor kidney transplantation is currently the preferred treatment for patients with end-stage renal disease. The psychosocial evaluation of kidney donor candidates relies mostly on the clinical viewpoint of transplant professionals because evidence-based guidelines for psychosocial donor eligibility are currently lacking. However, the accuracy of these clinical risk judgements and the potential added value of a systematic self-reported screening procedure are as yet unknown. The current study examined the effectiveness of the psychosocial evaluation by transplant professionals and the potential value of donor self-report measures in optimising the donor evaluation. Based on the stress-vulnerability model, the predictive value of predonation, intradonation and postdonation factors to impaired longer term health-related quality of life (HRQoL) of kidney donors was studied. DESIGN: An observational prospective multicentre study. SETTING: Seven Dutch transplantation centres. PARTICIPANTS: 588 potential donors participated, of whom 361 donated. Complete prospective data of 230 donors were available. Also, 1048 risk estimation questionnaires were completed by healthcare professionals. METHODS: Transplant professionals (nephrologists, coordinating nurses, social workers and psychologists) filled in risk estimation questionnaires on kidney donor candidates. Furthermore, 230 kidney donors completed questionnaires (eg, on HRQoL) before and 6 and 12 months after donation. PRIMARY AND SECONDARY OUTCOME MEASURES: HRQoL, demographic and preoperative, intraoperative and postoperative health characteristics, perceived support, donor cognitions, recipient functioning and professionals risk estimation questionnaires. RESULTS: On top of other predictors, such as the transplant professionals' risk assessments, donor self-report measures significantly predicted impaired longer term HRQoL after donation, particularly by poorer predonation physical (17%-28% explained variance) and psychological functioning (23%). CONCLUSIONS: The current study endorses the effectiveness of the psychosocial donor evaluation by professionals and the additional value of donor self-report measures in optimising the psychosocial evaluation. Consequently, systematic screening of donors based on the most prominent risk factors provide ground for tailored interventions for donors at risk.

Psychosocial consequences of living kidney donation: a prospective multicentre study on health-related quality of life, donor-recipient relationships and regret.

BACKGROUND: Previous studies have indicated decreased health-related quality of life (HRQoL) shortly after kidney donation, returning to baseline in the longer term. However, a subgroup of donors experiences persistent HRQoL problems. To identify which HRQoL aspects are impacted most by the donation and to identify at-risk donors, more specific insight into psychosocial donation consequences is needed. METHODS: The current study examined the HRQoL course, donor-perceived consequences of donation for donors, recipients and donor-recipient relationships, and regret up to 12 months post-donation in donors from seven Dutch transplantation centres. Kidney donor candidates (n = 588) completed self-report questionnaires early in the screening procedure, of which 361 (61%) donated their kidney. RESULTS: Data for 230 donors (64%) with complete assessments before donation and 6 and 12 months post-donation were analysed. Results indicated that donor physical HRQoL was comparable at all time points, except for an increase in fatigue that lasted up to 12 months post-donation. Mental HRQoL decreased at 6 months post-donation, but returned to baseline at 12 months. Donors reported large improvements in recipient's functioning and a smaller influence of the recipient's kidney disease or transplantation on the donor's life over time. A subgroup experienced negative donation consequences with 14% experiencing regret 12 months post-donation. Predictors of regret were more negative health perceptions and worse social functioning 6 months post-donation. The strongest baseline predictors of higher fatigue levels after donation were more pre-donation fatigue, worse general physical functioning and a younger age. CONCLUSIONS: Future research should examine predictors of HRQoL after donation to improve screening and to provide potential interventions in at-risk donors.

Donor and Recipient Perspectives on Anonymity in Kidney Donation From Live Donors: A Multicenter Survey Study.

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.

EVALUATION OF THE ROLE OF NURSE PRACTITIONERS IN MASTERPLAN.

BACKGROUND: Preserving kidney function and prevention of cardiovascular disease can only be achieved if patients are supported in self-managing their disease aimed at developing coping strategies. OBJECTIVES: In MASTERPLAN, a clinical trial from 2005 -2010, patients with chronic kidney disease were randomised to receive nurse practitioner (NP) support or physician care alone. We evaluated the role of NP and patients in achieving lifestyle treatment goals. However the evaluation of lifestyle interventions resulted in disappointing findings. DESIGN: We conducted a mixed method study to explain the previous quantitative results in order to achieve a more complete description of the practice of reaching lifestyle goals. PARTICIPANTS: Ten NPs in nine participating hospitals of the MASTERPLAN study were interviewed and identified a hierarchy on what treatment goals received the most attention during MASTERPLAN, at baseline and after four years. RESULTS: A shift of attention in study goals occured for various reasons e.g. progression of disease, too many goals, non-motivated patients, changed relationship between NP and patient. Different strategies were used to influence lifestyle change with varying degrees of success. CONCLUSION: Lifestyle change is difficult to maintain during five years follow up. Besides a shift of attention in study goals, the relationship with the patient also changed over time.

Self-efficacy and long-term medication use in patients with chronic kidney disease.

BACKGROUND: Long-term medication use in patients with chronic kidney disease is necessary to prevent further kidney damage. Medication adherence is positively influenced by high self-efficacy ratings. AIM: To determine if by discussing self-efficacy scores, leads to higher self-efficacy scores, regarding long-term medication use by patients with chronic kidney disease. METHOD: A total of 54 patients, randomised to a control or intervention group, rated their self-efficacy using the Long-Term Medication Behaviour Self-Efficacy Scale (LTMBSES). Their scores were only discussed in the intervention group. Self-efficacy enhancing interventions were used to influence self-efficacy scores. RESULTS: The intervention group had significant higher self-efficacy scores at posttest (p = 0.013). Transplantation had no effect on the mean self-efficacy. Patients ≤ 55 years had significant higher self-efficacy scores than patients > 55 years (p = 0.015). CONCLUSIONS: Discussing self-efficacy scores can lead to increased self-efficacy scores in patients with chronic kidney disease.

A pilot-study to identify the feasibility of an Internet-based coaching programme for changing the vascular risk profile of high-risk patients.

OBJECTIVE: To evaluate the feasibility of a web-based coaching programme for vascular risk factor treatment, to describe the patterns of use and to measure changes in risk factors. METHODS: Patients with a clinical manifestation of arterial disease and Internet access were asked to participate in the nurse-led Internet-based risk factor management programme. At the first clinic visit, a personalized action plan was made for the treatment of risk factors. Patients were instructed on communication with a specialized nurse through Internet and encouraged to enter self-measured risk factor levels at their personalized website. The nurse practitioner replied on working days and gave feedback, support, and recommendations on lifestyle and medical treatment. After 6 months, risk factors were re-measured. RESULTS: Fifty patients participated, 70% were overweight, 64% had hypertension, 42% hyperlipidemia, and 24% smoked at baseline. During 6 months, the log-in average at the individual website was 35 times per patient (1.3 log-ins/week); while the nurse practitioner logged-in at the overall website 23 times/week. The website was hardly used by five patients. Most e-mail messages were sent by patients for hypertension (211 times) and obesity (203 times), whereas the nurse practitioner sent nearly twice as many e-mail messages for hypertension (400 times) and obesity (455 times). The level of most risk factors decreased and the fraction of achieved treatment goals increased (blood pressure from 36 to 58%, LDL-cholesterol from 58 to 64%, glucose from 64 to 82%). CONCLUSIONS: A web-based vascular risk factor intervention programme is feasible; it is frequently used by patients and suitable to decrease the level of several risk factors. It has the promise of being an efficacious intervention for risk factor sanitation in patients with symptomatic vascular disease. PRACTICE IMPLICATIONS: An Internet-based individualised risk management programme could make patients aware of their self-management capability and may contribute to risk factor reduction.