Kjersti Lønning

How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting

Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.

Are octogenarians with end stage renal disease candidates for renal transplantation

Background Elderly patients are the fastest-growing group in need of renal transplantation. This study puts focus on renal transplant recipients in their 80th year or longer at time of engraftment. Is there evidence to support an absolute upper age limit for renal transplantation? Methods Recipients in their 80th year or longer, transplanted between 1983 and 2015, were included. Data were retrieved from the Norwegian Renal Registry in the end of October 2015. Graft and patient survivals were compared with recipients aged 70 to 79 years at transplantation. Results Forty-seven patients older than 79 years were transplanted in the defined period. Median age 80.1 years, 81% were men. Median time on dialysis before transplantation was 18.5 months. All patients received an allograft from a deceased donor (median donor age, 61.8 years). In the death-censored graft survival model, there was no statistical difference between the groups. We found improved patient and graft survivals after introduction of mycophenolate mofetil and induction with basiliximab. Patients transplanted before 2000 had increased risk of death compared with those transplanted after 2000 (hazard ratio, 3.2; 95% confidence interval, 1.2-8.7). Median uncensored graft survival for patients transplanted after the year 2000 was 5.0 year (95% confidence interval, 2.4-7.6). Median patient survival was 5.0 years (3.1-6.9) and 5-year patient survival was 55%. Conclusions Age by itself should not be an absolute contraindication against renal transplantation. An estimated 5-year survival rate of 55% post-engraftment for an 80-year-old patient is in our opinion more than acceptable.

Nursing intensity and costs of nurse staffing demonstrated by the RAFAELA system: liver vs. kidney transplant recipients

AIM To compare nursing intensity and nurse staffing costs for liver transplant (LTx) vs. kidney transplant (KTx) patients through the use of the RAFAELA system (the OPCq instrument). BACKGROUND High-quality patient care correlates with the correct allocation of nursing staff. Valid systems for obtaining data on nursing intensity, in relation to actual patient care needs, are needed to ensure correct staffing. METHODS A prospective, comparative study of 85 liver and 85 kidney transplant patients. Nursing intensity was calculated using the Oulu Patient Classification (OPCq) instrument. The cost per nursing intensity point was calculated by dividing annual total nursing wage costs with annual total nursing intensity points. RESULTS The results showed significantly higher nursing intensity per day for liver transplant patients compared to kidney transplant patients. The length of stay was the most important variable in relation to nursing intensity points per day. CONCLUSIONS The study demonstrated differences in nursing intensity and nurse staffing costs between the two patient groups. IMPLICATIONS FOR NURSING MANAGEMENT When defending nurse staffing decisions, it is essential that nurse managers have evidence-based knowledge of nursing intensity and nurse staffing costs.

Changes in health related quality of life in older candidates waiting for kidney transplantation

There is limited available knowledge regarding health‐related quality of life (HRQoL) in older patients with chronic kidney disease. We aimed to describe HRQoL in renal transplant candidates 65 years or older at transplant acceptance, and during the first year on the waiting list.

Adherence to Immunosuppressive Medications in Renal Transplant Recipients – Different Tools Capture Different Patients

Background Adherence to immunosuppressive therapy is important for patient and graft survival. An optimal adherence tool should be easily applicable in routine clinical setting. The primary objective of this study was to validate tools and tool combinations, suitable for annual routine capture of adherence data in renal transplant recipients (RTxR). Method A total of 300 RTxR using tacrolimus (Tac) as part of their immunosuppressive therapy were included in a single center open randomized prospective trial. Two thirds of the recipients were included within 4 weeks after transplantation and followed for 1 year (Group A). The other third was investigated cross-sectional at a 1-year post RTx control (Group B). The “Basel Assessment of Adherence to Immunosuppressive Medication Scale” (BAASIS) questionnaire capture taking and timing adherence, and was used to assess self-report adherence at 8 weeks and 1 year. In conjunction to the 8 weeks and 1-year investigation the treating health care provider (i.e. physician or nurse) scored patients adherence. Tac trough concentrations with corresponding doses were collected during the whole study period. The recipients were grouped as adherent (Ad)/non-adherent (NoAd) according to the different tools (Table 1). Results Mean age at inclusion was 55 (22-80) years, 73% males and 31% received a kidney from a living donor. The BAASIS questionnaire showed an increasing number of NoAd recipients with increasing time after transplantation: 9% at 8 weeks and 28% at 1 year. The majority of NoAd had a time-deviation over 2 hours from prescribed time (7% 8 weeks, 25% 1 year). NoAd clinician´s score was 3% at 8 weeks and 9% at 1 year, while variation in Tac concentrations captured 3% and 12% as NoAd respectively. The tools showed some degree of overlap, but captured generally different NoAd populations. A combination of BAASIS, clinician´s score and Tac variation defined 38% of the recipients as NoAd at 1 year (Table 2). But when not considering recipients that only had a time deviation > 2 hours as NoAd, the combination defined 22%. Conclusion NoAd increased with time after transplantation, mainly due to intake of medications > 2 hours from prescribed time. The combination of BAASIS, clinician´s score and Tac variation identifies to a large degree different proportion of risk patients. The combination of these tools is possible to use on an annual basis. The 2 hours time deviation in BAASIS as a single marker for NoAd seems to be too rigid, and the focus should mainly be on missed doses. In the investigated population about 1 out of 5 patients showed true NoAd at 1-year post-engraftment. Table. No title available. Table. No title available.

Exploring nurse managers’ perception of using the RAFAELA system as a management tool in a Norwegian hospital setting

The aim of the study, being part of a Norwegian evaluation project of the RAFAELA system, was to explore nurse managers’ perception of the RAFAELA system as a management tool in a Norwegian hospital setting.

Older kidney transplantation candidates’ expectations of improvement in life and health following kidney transplantation: semistructured interviews with enlisted dialysis patients aged 65 years and older

Objective The aim was to study the expectations of improvement in life and health following kidney transplantation (KTx) in a population of wait-listed patients ≥65 years with end-stage kidney disease. Design Qualitative research with individual in-depth interviews. Setting Patients on dialysis enlisted for a KTx from a deceased donor were included from an ongoing study of older patients’ perspectives on KTx. Qualitative face-to-face interviews were conducted in a safe and familiar setting, and were analysed thematically using the theoretical framework of lifespan. Informants Fifteen patients (median age 70 years, range 65–82) from all parts of Norway were interviewed. Informants were included consecutively until no new information was gained. Results Two main themes were evident: receiving a kidney is getting life back and grasp the chance. In addition, the themes ‘hard to loose capacity and strength’, ‘reduced freedom’ and ‘life on hold’ described the actual situation and thereby illuminated the informants’ expectations. The informants tried to balance positive expectations and realism towards KTx, and they were hoping to become free from dialysis and to live a normal life. Conclusion This study shows that older KTx candidates comprise a heterogeneous group of patients who take individual approaches that allow them to maintain autonomy and control while waiting for a transplant. This study provides new knowledge about the older KTx candidates relevant for clinicians, patients and researchers.

Should patients older than 65 years be offered a second kidney transplant

BackgroundAge and number of recipients in need of kidney re-transplantation are increasing. Re-transplantation practices and outcomes in elderly recipients are not previously explored. We aimed to retrospectively evaluate the outcomes of recipients 65 years and older receiving their second deceased donor allograft.MethodsThe study was designed as a retrospective registry based study. All recipients 65 years or older who received a deceased donor kidney transplant at Oslo University Hospital between 2000 and 2014 were included in the study. Survival outcomes were compared between recipients of first (TX1) and second (TX2) allograft. Survival analyses were performed using the Kaplan–Meier method and Cox proportional hazard models with patient survival, uncensored graft survival and death-censored graft survival as outcomes in the analyses.ResultsSeven hundred and thirty-tree recipients > 65 years received a first (n = 687) or second (n = 46) deceased donor kidney transplant. Five years uncensored graft survival rates were 64% in TX 2 and 67% in TX 1 (P= 0.789). Estimated five years graft survival rates censored for death with functioning graft were 88% in TX2 and 90% in TX1 (P=0.475). Adjusted hazard ratio for uncensored graft loss (TX2 vs. TX1) was 1.24 (95% CI 0.77 – 2.00). Adjusted hazard ratio for graft loss censored for death with functioning graft (TX2 vs. TX1) was 1.70 (0.72-4.02).ConclusionsOlder recipients of second transplants have outcomes that are comparable to the outcomes of age-matched first transplant recipients, and far better than previously documented for older transplant candidates remaining on dialysis treatment. Advanced age by itself should not be a contraindication for re-transplantation. Best results are achieved with short time on dialysis before re-transplantation.

Managing End-Stage Renal Disease in Older Patients: A Single Centre Experience with Renal Transplantation in the Elderly

The increase of patients developing end-stage renal disease (ESRD) has occurred predominantly in the older adult population. As a consequence, the nephrologists will need to decide whom of these older patients are siutable for transplantation. There are very few absolute contraindications, such as active infection and recent malignancy, but there are many relative or potential contraindications in older patients. Worldwide, organs available for transplantation are limited. Some centers are reluctant to use organs from expanded criteria donors also in elderly recipients. This leads to long waiting lists and many older patients will die while they are waiting for an organ. It is vital that the patients who are accepted for renal transplantation are those who will derive most benefit, and correct selection of patients and donor organs is therefore of outmost importance. This paper describes the previous and planned research our research group has performed with focus on older renal transplant recipients with special emphasis on survival, basic immunosuppression, selection of organs, and health related quality of life.