Background: The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1–5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. Methods and findings: MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%–79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%–76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5–45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3–35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5–66.6], p = 0.002; PCS 66.3 [95% CI 66.2–66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9–50.1], p = 0.002; PCS 48.0 [95% CI 47.9–48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. Conclusions: The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. Protocol registration: PROSPERO CRD42020164737.

Background Poor recruitment to randomised controlled trials (RCTs) is a widespread problem. Provision of interventions aimed at supporting or incentivising clinicians may improve recruitment to RCTs. Objectives To quantify the effects of strategies aimed at improving the recruitment activity of clinicians in RCTs, complemented with a synthesis of qualitative evidence related to clinicians' attitudes towards recruiting to RCTs. Data sources A systematic review of English and non-English articles identified from: The Cochrane Library, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ebsco CINAHL, Index to Theses and Open SIGLE from 2001 to March 2011. Additional reports were identified through citation searches of included articles. Study eligibility criteria Quantitative studies were included if they evaluated interventions aimed at improving the recruitment activity of clinicians or compared recruitment by different groups of clinicians. Information about host trial, study design, participants, interventions, outcomes and host RCT was extracted by one researcher and checked by another. Studies that met the inclusion criteria were assessed for quality using a standardised tool, the Effective Public Health Practice Project tool. Qualitative studies were included if they investigated clinicians' attitudes to recruiting patients to RCTs. All results/findings were extracted, and content analysis was carried out. Overarching themes were abstracted, followed by a metasummary analysis. Studies that met the inclusion criteria were assessed for quality using the Critical Appraisal Skills Programme qualitative checklist. Data extraction Data extraction was carried out by one researcher using predefined data fields, including study quality indicators, and verified by another. Results Eight quantitative studies were included describing four interventions and a comparison of recruiting clinicians. One study was rated as strong, one as moderate and the remaining six as weak when assessed for quality using the Effective Public Health Practice Project tool. Effective interventions included the use of qualitative research to identify and overcome barriers to recruitment, reduction of the clinical workload associated with participation in RCTs and the provision of extra training and protected research time. Eleven qualitative studies were identified, and eight themes were abstracted from the data: understanding of research, communication, perceived patient barriers, patient–clinician relationship, effect on patients, effect on clinical practice, individual benefits for clinicians and methods associated with successful recruitment. Metasummary analysis identified the most frequently reported subthemes to be: difficulty communicating trial methods, poor understanding of research and priority given to patient well-being. Overall, the qualitative studies were found to be of good quality when assessed using the Critical Appraisal Skills Programme checklist. Conclusions There were few high-quality trials that tested interventions to improve clinicians' recruitment activity in RCTs. The most promising intervention was the use of qualitative methods to identify and overcome barriers to clinician recruitment activity. More good quality studies of interventions are needed to add to the evidence base. The metasummary of qualitative findings identified understanding and communicating RCT methods as a key target for future interventions to improve recruitment. Reinforcement of the potential benefits, both for clinicians and for their patients, could also be a successful factor in improving recruitment. A bias was found towards investigating barriers to recruitment, so future work should also encompass a focus on successfully recruiting trials.

Over the last decade, patient and public involvement (PPI) has become a requisite in applied health research. Some funding bodies demand explicit evidence of PPI, while others have made a commitment to developing PPI in the projects they fund. Despite being commonplace, there remains a dearth of engagement with the ethical and theoretical underpinnings of PPI processes and practices. More specifically, while there is a small (but growing) body of literature examining the effectiveness and impact of PPI, there has been relatively little reflection on whether the concept/practice of PPI is internally coherent. Here, the authors unpick a ‘paradox’ within PPI, which highlights a tension between its moral and pragmatic motivations and its implementation. The authors argue that this ‘professionalisation paradox’ means we need to rethink the practice, and purpose, of PPI in research.

Objective To summarise the evidence regarding the effectiveness of integrated care interventions in reducing hospital activity. Design Umbrella review of systematic reviews and meta-analyses. Setting Interventions must have delivered care crossing the boundary between at least two health and/or social care settings. Participants Adult patients with one or more chronic diseases. Data sources MEDLINE, Embase, ASSIA, PsycINFO, HMIC, CINAHL, Cochrane Library (HTA database, DARE, Cochrane Database of Systematic Reviews), EPPI-Centre, TRIP, HEED, manual screening of references. Outcome measures Any measure of hospital admission or readmission, length of stay (LoS), accident and emergency use, healthcare costs. Results 50 reviews were included. Interventions focused on case management (n=8), chronic care model (CCM) (n=9), discharge management (n=15), complex interventions (n=3), multidisciplinary teams (MDT) (n=10) and self-management (n=5). 29 reviews reported statistically significant improvements in at least one outcome. 11/21 reviews reported significantly reduced emergency admissions (15–50%); 11/24 showed significant reductions in all-cause (10–30%) or condition-specific (15–50%) readmissions; 9/16 reported LoS reductions of 1–7 days and 4/9 showed significantly lower A&E use (30–40%). 10/25 reviews reported significant cost reductions but provided little robust evidence. Effective interventions included discharge management with postdischarge support, MDT care with teams that include condition-specific expertise, specialist nurses and/or pharmacists and self-management as an adjunct to broader interventions. Interventions were most effective when targeting single conditions such as heart failure, and when care was provided in patients’ homes. Conclusions Although all outcomes showed some significant reductions, and a number of potentially effective interventions were found, interventions rarely demonstrated unequivocally positive effects. Despite the centrality of integrated care to current policy, questions remain about whether the magnitude of potentially achievable gains is enough to satisfy national targets for reductions in hospital activity. Trial registration number CRD42015016458.

To determine the effectiveness of integrated care interventions in improving the Quality of Life (QoL) for patients with chronic conditions. A review of the systematic reviews evidence (umbrella review). Medline, Embase, ASSIA, PsychINFO, HMIC, CINAHL, Cochrane Library (including HTA database), DARE, and Cochrane Database of Systematic Reviews), EPPI-Centre, TRIP and Health Economics Evaluations databases. Reference lists of included reviews were searched for additional references not returned by electronic searches. English language systematic reviews or meta-analyses published since 2000 that assessed the effectiveness of interventions in improving the QoL of patients with chronic conditions. Two reviewers independently assessed reviews for eligibility, extracted data, and assessed the quality of included studies. A total of 41 reviews assessed QoL. Twenty one reviews presented quantitative data, 17 reviews were narrative and three were reviews of reviews. The intervention categories included case management, Chronic care model (CCM), discharge management, multidisciplinary teams (MDT), complex interventions, primary vs. secondary care follow-up, and self-management. Taken together, the 41 reviews that assessed QoL provided a mixed picture of the effectiveness of integrated care interventions. Case management interventions showed some positive findings as did CCM interventions, although these interventions were more likely to be effective when they included a greater number of components. Discharge management interventions appeared to be particularly successful for patients with heart failure. MDT and self-management interventions showed a mixed picture. In general terms, interventions were typically more effective in improving condition-specific QoL rather than global QoL. This review provided the first overview of international evidence for the effectiveness of integrated care interventions for improving the QoL for patients with chronic conditions.