Annette Lennerling

The Psychometric Properties and Practicability of Self-Report Instruments to Identify Medication Nonadherence in Adult Transplant Patients: A Systematic Review

Introduction. Nonadherence to immunosuppressive therapy is recognized as a key prognostic indicator for poor posttransplantation long-term outcomes. Several methods aiming to measure medication nonadherence have been suggested in the literature. Although combining measurement methods is regarded as the gold standard for measuring nonadherence, self-report is generally considered a central component of adherence assessment. However, no systematic review currently exists to determine which instrument(s) are most appropriate for use in transplant populations. Methodology. The transplant360 Task Force first performed a survey of the self-report adherence instruments currently used in European centers. Next, a systematic literature review of self-report instruments assessing medication adherence in chronically ill patients was conducted. Self-report instruments were evaluated to assess those which were: (a) short and easy to score; (b) assessed both the taking and timing of medication intake; and (c) had established reliability and validity. Results. Fourteen instruments were identified from our survey of European centers, of which the Basel Assessment of Adherence Scale for Immunosuppressives met the aforementioned criteria. The systematic review found 20 self-report instruments, of which only two qualified for use in transplantation, that is, the Brief Antiretroviral Adherence Index and the Medication Adherence Self-Report Inventory. Discussion. The three selected self-report scales may assist transplant professionals in detecting nonadherence. However, these scales were only validated in patients with HIV. Although HIV shares similar characteristics with transplantation, including the importance of taking and timing of medication, further validation in transplant populations is required.

Becoming a living kidney donor.

Earlier investigations of attitudes of living kidney donors have been performed in retrospect. We saw a need to investigate in depth those motives and feelings that are relevant in potential kidney donors. With a phenomenologic approach, interviews were performed with 12 potential donors. Seven categories of motives were identified: a desire to help, increased self-esteem from doing good deeds, identification with the recipient, self-benefit from the relative’s improved health, mere logic, external pressure, and a feeling of moral duty. In the individual, these categories interacted to create a perception of donation being the only option.

Low absolute glomerular filtration rate in the living kidney donor: A risk factor for graft loss

Background. There is no defined lower acceptable level of glomerular filtration rate (GFR) in potential living kidney donors. Considerations focus on the risk for the donor. We wanted to evaluate the outcome in the recipient in relation to the GFR of the living donor. Methods. There were 344 living donated kidney transplantations performed January 1985 through February 1997 which were evaluated. Two thirds of the donors shared one haplotype with the recipient and 15% shared both. Of the donors 18% were above age 60. The median follow-up time (until graft loss) was 63 months. Before nephrectomy, the donors′ GFR had been measured by isotope clearance. Results. Twenty-six donors (7.6%) had an absolute GFR below 80 ml/min, i.e. not adjusted to 1.73 m2 body surface area (BSA). Cumulative graft survival, censored for graft loss because of death of the patient, was significantly reduced in recipients of grafts from donors with GFR <80 ml/min. A significant correlation between GFR and donor age was observed, but donor age per se was not identified as a risk factor for graft loss. In a Cox stepwise proportional hazards analysis, the relative risk for graft loss was 2.28 with a GFR below 80 ml/min (confidence interval 1.183–4.383, P =0.014) and with sharing one or both haplotypes 0.56 (0.313–0.988, P =0.046) and 0.36 (0.139–0.912, P =0.03), respectively. Conclusions. An absolute GFR below 80 ml/min in the living donor more than doubles the risk of graft loss. This fact should be considered when definitions of acceptable limits for donor GFR are discussed.

Post-nephrectomy development of renal function in living kidney donors: a cross-sectional retrospective study

BACKGROUND Increasing numbers of living donor kidney transplantations calls for better knowledge about long-term donor outcomes and risks. METHODS To explore long-term kidney donor outcomes and risks, we conducted a cross sectional retrospective study. To this end, we analysed renal function using measured glomerular filtration rate (mGFR) and estimated glomerular filtration rate (eGFR) as well as microalbuminuria, blood pressure (BP), body mass index, haemoglobin, albumin and parathyroid hormone in kidney donors nephrectomized between 1965 and 2005. RESULTS A total number of 573 kidney donors agreed to undergo medical follow-up examinations. The mean age (standard deviation) at donation was 47 (11) years and the mean time since donation was 14 (9) years. Both mean mGFR [68 (15) mL/min/1.73 m(2) body surface; P = 0.028] and mean eGFR [71 (16) mL/min/1.73 m(2) body surface; P < 0.001], based on modified diet renal dysfunction and iohexol or Cr-EDTA clearance, respectively, were found to decrease with age and to increase with time since donation. Special multivariable regression analyses reveal that for 30-year old donors, the median eGFR typically increases during the first 17 years, then remains constant for ~8 years and slowly declines thereafter. For 50-year-old donors, the median eGFR is expected to increase during the first 15 years or so and then to enter a phase of slight progressive decline. In total, 23% (126/546) of the donors were on antihypertensive medication. An additional 22% (117/543) of the donors were found to suffer from hitherto undiagnosed hypertension (BP >140/90 mm Hg). CONCLUSION Renal function of the remaining kidney in living donors is expected to improve for many years but will show signs of slight deterioration in the longer run.

Living organ donation practices in Europe – results from an online survey

In Europe, living organ donation (LOD) is increasingly accepted as a valuable solution to overcome the organ shortage. However, considerable differences exist between European countries regarding frequency, practices and acceptance of donor–recipient relations. As a response, the Coordination Action project ‘Living Organ Donation in Europe’ (www.eulod.eu), funded by the Seventh Framework Programme of the European Commission, was initiated. Transplant professionals from 331 European kidney and liver transplant centres were invited to complete an online survey on living kidney donation (LKD) and living liver donation (LLD). In total, 113 kidney transplant centres from 40 countries and 39 liver transplant centres from 24 countries responded. 96.5% and 71.8% performed LKD and LLD respectively. The content of the medical screening of donors was similar, but criteria for donor acceptance varied. Few absolute contraindications for donation existed. The reimbursement policies diverged and the majority of the donors did not get reimbursed for their income loss during recovery. Large discrepancies were found between geographical European regions (the Eastern, the Mediterranean and the North‐Western). As a result of this survey we suggest several recommendations to improve quality and safety of LOD in Europe.

New Classification of ELPAT for Living Organ Donation

In the literature, varying terminology for living organ donation can be found. However, there seems to be a need for a new classification to avoid confusion. Therefore, we assessed existing terminology in the light of current living organ donation practices and suggest a more straightforward classification. We propose to concentrate on the degree of specificity with which donors identify intended recipients and to subsequently verify whether the donation to these recipients occurs directly or indirectly. According to this approach, one could distinguish between “specified” and “unspecified” donation. Within specified donation, a distinction can be made between “direct” and “indirect” donation.

Self-Reported Non-Adherence and Beliefs About Medication in a SwedishKidney Transplant Population

Background: Patients’ non-adherence to immunosuppressant treatment after organ transplantation may lead to organ failure, graft loss and death. Non-adherence among Swedish kidney transplant recipients has not previously been studied. Hence the aim of this study was to explore non-adherence among Swedish kidney transplant recipients by using self-report instruments as well as testing the hypothesis that there is a difference in self-reported symptoms, beliefs about medicine and social support between respondents with or without self reported non-adherence. Materials and Methodology: In the present cross sectional study 250 renal transplant recipients participated by replying to a questionnaire. Two validated instruments were included, one on beliefs about medicine (the BMQ©), the other on nonadherence (the BAASIS©). Results: Only 46 % never failed to follow the medical treatment with respect to taking the drugs, dosage or timing (>2 hrs from prescribed time). Timing was the most frequently reported deviation (48 %). Forty-seven patients (16 %) had failed taking at least one dose of the prescribed immunosuppressants during the past four weeks. Four individuals had reduced the prescribed doses. Only one reported taking a ‘drug holiday’. Nine participants reported stronger concerns than necessities for immunosuppressive medication. For the BMQ the necessity scores were extremely high while the scores for concern were low. Risk behaviour identified by the BAASIS had no association in risk attitudes as identified in the BMQ. The only factor relating to non-adherence was lack of social support (p=0.022). Conclusion: In general adherence was high. Identification of the exceptions remains a challenge.

Nondirected living kidney donation: experiences in a Swedish Transplant Centre

Abstract:  The lack of kidneys for transplantation is a worldwide problem. Different efforts to expand the donor pool have been made. One of them has been the acceptance of altruistic nondirected living kidney donors. This concept was first published by Matas et al. in 2000. Since then, several centres in the United States have started programmes with altruistic nondirected donors (NDD) for kidney transplantation. The use of NDD is still very controversial and rare in Europe. In Sweden, an NDD programme was initiated by the Swedish Transplantation Society in 2004. This article addresses central issues involved with NDD and describes our experiences with the programme so far at Sahlgrenska University Hospital in Göteborg, Sweden.

Anonymity and Live-Donor Transplantation: An ELPAT View

Anonymity of donors or recipients in living-donor transplantation is a complex issue and practice varies widely. There are compelling arguments for maintaining anonymity of both parties before unspecified donor transplantation and specified indirect transplantation. After transplantation, there are still good reasons to avoid disclosure of identities. Although anonymity could be lifted if both parties explicitly request it, there are significant, potentially negative consequences of such an approach. Both donor and recipient should be counseled regarding these, and transplant teams should consider the considerable financial and psychosocial costs if problems are encountered as a result of contact. Given the recent rise in the number of unspecified living-donor transplants and through paired exchange schemes, it is vital that data are collected regarding the effects of maintaining or revoking anonymity after transplantation.

Development and Psychometric Evaluation of the Instrument: Attitudes Towards Organ Donor Advocacy Scale (ATODAS)

The consequences of advocacy in nursing are critical when caring for a potential organ donor. No specific instrument has been available to measure attitudes toward organ donor advocacy. The aim of this study was to develop and psychometrically evaluate an instrument for measuring intensive and critical care (ICU) nurses’ attitudes toward organ donor advocacy. The study was conducted in two stages: instrument development and instrument evaluation and refinement. A questionnaire was developed (Attitude Toward Organ Donor Advocacy Scale (ATODAS)), which was sent to half of all nurses working in ICUs (general-, neuro-, thoracic- or paediatric-) in Sweden (n=1180). The final response rate was 42.5% (n=502). In order to explore validity and reliability, the expected scale dimensionality of the questionnaire was examined both by explorative principal component analysis (with oblique, varimax rotation) and by confirmatory multi-trait analysis. The confirmatory factor analysis indicated that the ATODAS could best be explained by five factors; Attitudes toward championing organ donation at a structural hospital level; Attitudes toward championing organ donation at a political and research level; Attitudes toward actively and personally safeguarding the will and wishes of the potential organ donor, Attitudes toward safeguarding the potential donor’s will and wishes by a professional approach and Attitudes toward safeguarding the will and wishes of the relatives. This initial testing indicated that the ATODAS has good psychometric properties and can be used in future research to explore if interventions may influence attitudes and behaviors related to organ donor advocacy.