The strong associations between symptom clusters and depressive symptoms and the physical and mental domains of HRQOL should lead to an increased focus on symptom-alleviating interventions. Additional research is warranted to determine whether treatment of symptom clusters rather than single symptoms will improve HRQOL.

BackgroundLittle is known how health related quality of life (HRQOL) change in the transition from dialysis to renal transplantation (RTX). Longitudinal data addressing the patient-related outcomes are scarce, and particularly data regarding kidney-specific HRQOL are lacking. Thus, the aim of the current study was to assess HRQOL in patients followed from dialysis to RTX. Furthermore, to compare HRQOL in RTX patients and the general population.MethodsIn a prospective study, HRQOL was measured in a cohort of 110 patients (median age 53.5 (IQR 39–62) years, GFR 54 (45–72) ml/min/1.73 m2) in dialysis and after RTX using the self-administered Kidney Disease and Quality of Life Short Form version 1.3 (KDQOL-SF). Generic HRQOL in the RTX patients was compared to that of the general population (n = 5903) using the SF-36. Clinical important change after RTX was defined as difference in HRQOL of SD/2.ResultsFollow-up time was 55 (IQR 50–59) months, and time after RTX was 41 (34–51) months. Four of nine domains in kidney-specific HRQOL improved after RTX, i.e. burden of kidney disease, effect of kidney disease, symptoms and work status. In SF-36, general health, vitality, social function and role physical improved after RTX, but none of the domains improved sufficiently to be regarded as clinically relevant change. There were highly significant differences in HRQOL between RTX patients and the general population after adjustment for age and gender for all items of SF-36 except for bodily pain and mental health.ConclusionsHRQOL improved in the transition from dialysis to transplantation, but clinical relevant change was only obtained in the kidney specific domains. HRQOL was perceived considerably poorer in RTX patients than in the general population. Our observations point to the need of improving HRQOL even after RTX, and should encourage further longitudinal research and clinical attention during treatment shift.

Clustering of uremic symptoms predicted mortality. Assessing co-occurring symptoms rather than single symptoms may help to identify dialysis patients at high risk for mortality.

Sleep complaints are prevalent and associated with poor health-related quality of life (HRQoL), depression and possibly mortality in dialysis patients. This study aimed to explore possible associations between sleep quality, daytime sleepiness and mortality in dialysis patients. In this study, 301 dialysis patients were followed up to 4.3 years. HRQoL was evaluated at baseline with the Kidney Disease and Quality of Life--Short Form (KDQoL-SF), depression with Beck Depression Inventory (BDI), sleep quality with Pittsburgh Sleep Quality Index and daytime sleepiness with Epworth Sleepiness Scale. The single item "on a scale from 0-10, how would you evaluate your sleep?" in the sleep subscale in KDQoL-SF was used to identify poor (0-5) and good sleepers (6-10). A total of 160 patients (53.3%) were characterized as poor sleepers. They were younger (r = 0.241, P < 0.001), had more depression (BDI: 8.72 ± 6.79 vs. 13.60 ± 8.04, P < 0.001), a higher consumption of hypnotics and antidepressants and reduced HRQoL (Mental Component Summary score: 45.4 ± 11.0 vs. 50.0 ± 10.4, P < 0.001. Physical Component Summary score: 35.0 ± 9.9 vs. 38.5 ± 10.5, P = 0.004). In multivariate analyses, poor sleepers had nearly a twofold increase in mortality risk (hazard ratio [HR] 1.92, confidence interval [CI] 1.10-3.35, P = 0.022). Daytime sleepiness was not related to mortality (HR 1.01, CI 0.95-1.08, P = 0.751). Sleep complaints predicted increased mortality risk in dialysis patients and should therefore be routinely assessed. Further studies are needed to find suitable treatment options for poor sleep in dialysis patients as it may affect both HRQoL and survival.

Although symptoms and symptom clusters were reduced after RTX, the clinical relevance of the reductions was ambiguous. Symptom clusters could not be generated after RTX, suggesting that use of the KDQOL-SF may not be optimal to assess symptoms in RTX patients.

As sleep complaints, daytime sleepiness and depression were prevalent, all dialysis patients should routinely be screened for self-perceived sleep problems with a simple Questionnaire.

Purpose To identify instruments used to measure parents’ Quality of Life (QoL) during pregnancy and the postpartum period, and to describe their characteristics and psychometric properties. Methods For this scoping review we conducted systematic literature searches in MEDLINE, EMBASE, PsychINFO, CINAHL and HaPI in mid-December 2020, to identify studies evaluating psychometric properties. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) were used to define and categorize psychometric properties. Two reviewers screened the studies independently, and customized screening questions were used to assess eligibility against inclusion criteria. Data were systematically extracted into a predesigned data charting matrix, and descriptively analyzed. Results The searches identified 5671 studies, of which 53 studies met the inclusion criteria. In total, there were 19 QoL instruments: 12 generic and seven period specific. The most reported instruments were SF-36, SF-12 and WHOQOL-BREF, and the most evaluated instruments were SF-12, WHOQOL-BREF, QOL-GRAV, and PQOL. We found that none of the identified instruments had been evaluated for all nine psychometric properties recommended by the COSMIN. The most reported psychometric properties were internal consistency and structural validity. The instruments were primarily assessed in parents residing in Asia (50%), and 83% of the studies were conducted from 2010 to 2020. Only three studies included psychometric measures assessed on fathers. Conclusion Our review shows there is extensive evidence on the internal consistency and structural validity of QoL instruments used on parents during pregnancy and the postpartum period, but that the evidence on other psychometric properties is sparse. Validation studies and primary studies are needed to provide evidence on the reliability, validity, responsiveness, and interpretability of QoL instruments for this target group, in particular for fathers and partners.

Background Pregnant women and men with pregnant partners experience variations in quality of life (QoL) during pregnancy, a period characterized by physical, psychological, and social changes. Pregnancy is associated with reduced QoL, depressive symptoms, and sleep problems. This study aimed to: (1) determine whether Norwegian pregnant women and men with pregnant partners differed in QoL levels in the third trimester of pregnancy; (2) determine whether the relationship between perception of sleep and QoL is moderated by depressive symptoms, when analyzed separately in pregnant women and men with pregnant partners; and (3) determine whether selected possible predictive factors were associated with QoL when stratified by level of depressive symptoms, in pregnant women and men with pregnant partners separately. Methods A cross-sectional study conducted between October 2018 and January 2020 included 228 pregnant women and 197 men with pregnant partners in the third trimester of pregnancy. The age range was 22–50 years. QoL was assessed using the World Health Organization Quality of Life Questionnaire brief version, depressive symptoms using the Edinburgh Postnatal Depression Scale, and perception of sleep by a single item. Data were analyzed in SPSS version 28 using descriptive statistics, the PROCESS macro for moderation analyses, and multivariate linear regression. The level of statistical significance was p < 0.05. Results Pregnant women reported significantly lower QoL scores on the physical health and psychological domains than the men with pregnant partners. Our data did not reveal any moderating effect of depressive symptoms on the relationship between the perception of sleep and QoL. Depressive symptoms in the pregnant women were found to be a significant predictor of lower QoL in all domains. In the men with pregnant partners, getting enough sleep was a significant predictor of higher QoL in all domains. In the pregnant women without depressive symptoms, higher QoL in the physical health domain was significantly associated with the perception of getting enough sleep. Conclusion Women in the final trimester of pregnancy experience poor QoL compared to the men with pregnant partners. Pregnant women with depressive symptoms have lower QoL compared to those without depressive symptoms. The perception of getting enough sleep was associated with better QoL.