UNASSIGNED: Living with kidney failure can interfere with life participation (ie, participation in valued life activities). Life participation has recently been identified as a top-priority health outcome of people on peritoneal dialysis therapy, but it is a relatively unexplored topic in peritoneal dialysis.
UNASSIGNED: The objective is to describe the interventions that have been used to promote life participation in the peritoneal dialysis population and highlight research gaps warranting further investigation.
UNASSIGNED: A scoping review was conducted according to the Joanna Briggs Institute methodology.
UNASSIGNED: Six electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, CINAHL Plus, SCOPUS) were searched.
UNASSIGNED: Adults aged 18+ years on peritoneal dialysis therapy.
UNASSIGNED: Any dedicated scale or subscale that measured life participation as an isolated outcome.
UNASSIGNED: Title/abstract screening was completed independently after adequate inter-rater reliability (kappa > 0.8) was achieved among reviewers. Full-text review and data extraction were conducted in duplicate. Extracted data were analyzed using counts, percentages, and narrative synthesis to describe patterns in the literature.
UNASSIGNED: After identifying 13 874 results, 17 studies met eligibility criteria. Eight studies were conducted within the past 5 years, with China as the most common study location. Only 2 studies investigated life participation as a primary study outcome. Eight studies targeted personal-physical barriers to life participation, 8 targeted multiple barriers, and 1 targeted an environmental-institutional barrier. Life participation was assessed within a subdomain of a broader quality of life assessment (The Kidney Disease Quality of Life [KDQOL]-36 or the 36-Item Short-Form Health Survey [SF-36]) in 11 studies. The majority of assessments captured life participation in all major domains of participation (self-care, work, and leisure).
UNASSIGNED: Eligibility screening at title/abstract stage was not performed in duplicate; articles not available in English were excluded.
UNASSIGNED: Life participation has infrequently been prioritized as a health outcome in peritoneal dialysis (PD). Interventions have been narrow in focus given the range of challenges faced by people on PD and the holistic approaches used in other clinical populations. Future research should prioritize life participation as a key health outcome in PD and investigate the impact of interventions that address cognitive, affective, and environmental barriers to participation.
UNASSIGNED: Vivre avec l’insuffisance rénale peut entraver la participation à la vie (c.-à-d., la participation aux activités significatives du quotidien). La participation à la vie a récemment été identifiée comme un résultat de santé prioritaire pour les personnes sous dialyse péritonéale. Pourtant, elle demeure un sujet relativement inexploré en contexte de dialyse péritonéale (DP).
UNASSIGNED: Décrire les interventions utilisées pour promouvoir la participation à la vie dans une population sous dialyse péritonéale et mettre en évidence les lacunes de la recherche qui justifieraient une étude plus approfondie.
UNASSIGNED: Un examen de la portée a été effectué selon la méthodologie de l’Institut Joanna Briggs.
UNASSIGNED: Consultation de six bases de données électroniques (MEDLINE [OVID], embase, PsycINFO, Cochrane Central Register of Controlled Trials, CINAHL plus et SCOPUS).
UNASSIGNED: Des adultes (18 ans et plus) sous dialyse péritonéale.
UNASSIGNED: Toute échelle ou sous-échelle dédiée mesurant la participation à la vie comme un résultat isolé.
UNASSIGNED: La sélection du titre ou du résumé des articles a été effectuée de façon indépendante une fois la valeur adéquate de fiabilité inter-évaluateurs (kappa > 0,8) atteinte parmi les évaluateurs. L’examen du texte intégral et l’extraction des données ont été effectués en double. L’analyse des données extraites a été réalisée à l’aide de dénombrements, de pourcentages et de synthèses narratives afin de décrire les tendances dans la littérature.
UNASSIGNED: Des 13 874 résultats répertoriés, seules 17 études répondaient aux critères d’admissibilité. Huit études avaient été menées dans les cinq dernières années, le plus souvent en Chine. Seules deux études avaient examiné la participation à la vie comme critère de jugement principal. Huit études ciblaient les obstacles personnels-physiques à la participation à la vie, huit ciblaient les obstacles multiples et une seule ciblait les obstacles environnementaux-institutionnels. La participation à la vie avait été évaluée dans un sous-domaine d’une évaluation plus large de la qualité de vie (KDQOL-36 ou SF-36) dans onze des études retenues. La majorité des évaluations portaient sur la participation à la vie dans tous les domaines principaux (soins personnels, travail et loisirs).
UNASSIGNED: La vérification de l’admissibilité à l’étape de la sélection des titres ou résumés n’a pas été effectuée en double; les articles non disponibles en anglais ont été exclus.
UNASSIGNED: La participation à la vie a rarement été considérée comme un résultat de santé prioritaire en DP. Les interventions ont été limitées, compte tenu de l’éventail des défis auxquels sont confrontées les personnes sous DP et des approches holistiques utilisées dans d’autres populations cliniques. Les recherches futures devraient accorder la priorité à la participation à la vie comme résultat clé de la santé des personnes sous DP et étudier l’effet des interventions qui s’attaquent aux obstacles cognitifs, affectifs et environnementaux qui entravent la participation à la vie.

Patients receiving peritoneal dialysis (PD) endure an ongoing regimen of daily fluid exchanges and are at risk of potentially life-threatening complications and debilitating symptoms that can limit their ability to participate in life activities. The aim of the study was to identify the characteristics, content and psychometric properties of measures for life participation used in research in PD.
We searched MEDLINE, Embase, PsychInfo, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and the Cochrane Central Register of Controlled Trials from inception to May 2020 for all studies that reported life participation in patients on PD. The characteristics, dimensions of life participation and psychometric properties of these measures were extracted and analyzed.
Of the 301 studies included, 17 (6%) were randomized studies and 284 (94%) were nonrandomized studies. Forty-two different measures were used to assess life participation. Of these, 23 (55%) were used in only one study. Fifteen (36%) measures were specifically designed to assess life participation, while 27 (64%) measures assessed broader constructs, such as quality of life, but included questions on life participation. The 36-Item Short Form Health Survey and Kidney Disease Quality of Life Short Form were the most frequently used measures [122 (41%) and 86 (29%) studies, respectively]. Eight (19%) measures had validation data to support their use in patients on PD.
The many measures currently used to assess life participation in patients receiving PD vary in their characteristics, content and validation. Further work to pilot and validate potential measures is required to establish a core patient-reported outcome measure to assess life participation in patients receiving PD.

The burden of chronic kidney disease (CKD) and its treatment may severely limit the ability of children with CKD to do daily tasks and participate in family, school, sporting and recreational activities. Life participation is critically important to affected children and their families; however, the appropriateness and validity of available measures used to assess this outcome are uncertain. The aim of this study was to identify the characteristics, content and psychometric properties of existing measures for life participation used in children with CKD.
We searched MEDLINE, Embase, PsychINFO, Cumulative Index to Nursing and Allied Health Literature and the Cochrane Kidney and Transplant register to August 2019 for all studies that used a measure to report life participation in children with CKD. For each measure, we extracted and analyzed the characteristics, dimensions of life participation and psychometric properties.
From 128 studies, we identified 63 different measures used to assess life participation in children with CKD. Twenty-five (40%) of the measures were patient reported, 7 (11%) were parent proxy reported and 31 (49%) had both self and parent proxy reports available. Twenty-two were used in one study only. The Pediatric Quality of Life Inventory version 4.0 generic module was used most frequently in 62 (48%) studies. Seven (11%) were designed to assess ability to participate in life, with 56 (89%) designed to assess other constructs (e.g. quality of life) with a subscale or selected questions on life participation. Across all measures, the three most frequent activities specified were social activities with friends and/or family, leisure activities and self-care activities. Validation data in the pediatric CKD population were available for only 19 (30%) measures.
Life participation is inconsistently measured in children with CKD and the measures used vary in their characteristics, content and validity. Validation data supporting these measures in this population are often incomplete and are sparse. A meaningful and validated measure for life participation in children with CKD is needed.

Fatigue is a prevalent and debilitating symptom in patients receiving hemodialysis. We aimed to identify and evaluate the characteristics and psychometric properties of patient-reported outcome measures for fatigue in patients receiving hemodialysis, to inform the selection of a robust and feasible measure for use in randomized trials in hemodialysis.
Systematic review of outcome measures for fatigue.
Patients receiving hemodialysis.
MEDLINE, Embase, PsycINFO, and CINAHL from inception to April 2017 were searched for all studies that reported fatigue in patients receiving hemodialysis.
With a focus on addressing methods, items (individual questions) from all measures were categorized into content and measurement dimensions of fatigue. We assessed the general characteristics (eg, number of items and cost) and psychometric properties of all measures.
From 123 studies, we identified 43 different measures: 24 (55%) were developed specifically for the hemodialysis population (of which 18 were nonvalidated author-developed measures for use in their study only), 17 (40%) for other populations, and 2 (5%) for chronic kidney disease (all stages). The measures assessed 11 content dimensions of fatigue, the 3 most frequent being level of energy (19 [44%]), tiredness (15 [35%]), and life participation (14 [33%]); and 4 measurement dimensions: severity (34 [79%]), frequency (10 [23%]), duration (4 [9%]), and change (1 [2%]). The vitality subscale of the 36-Item Short Form Health Survey (SF-36) was the most frequently used (19 [15%] studies), but has only been tested for reliability in hemodialysis. Of the fatigue-specific measures, the Chalder Fatigue Scale was the only one evaluated in hemodialysis, but the full psychometric robustness remains uncertain.
For feasibility, we searched for validation studies in the hemodialysis population using the names of measures identified in the primary search strategy.
A very wide range of measures have been used to assess fatigue in patients receiving hemodialysis, each varying in content and length. Many have limited validation data available in this population. A standardized and psychometrically robust measure that captures dimensions of fatigue that are important to patients is needed to estimate and improve this disabling complication of hemodialysis.