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.

BACKGROUND: Kidney transplantation offers meaningful health improvements compared to dialysis, yet the quality of life and life expectancy of kidney transplant recipients still lag behind those of their healthy peers. Physical inactivity and poor physical fitness are prevalent among kidney transplant recipients, affecting overall life participation.
OBJECTIVE: To explore challenges hindering life participation for kidney transplant recipients and reveal facilitators and barriers to integrating rehabilitation into their daily lives.
METHODS: An explorative study using a qualitative method.
METHODS: Fourteen purposively selected kidney transplant recipients.
METHODS: Semistructured, individual interviews were conducted posttransplantation. The following topics were covered: living with chronic kidney disease, pretransplantation challenges, posttransplantation recovery, engagement in various activities, including physical activity, and the need for supervised exercise rehabilitation programmes. Interviews were recorded and transcribed verbatim, and an inductive thematic analysis approach was used.
RESULTS: Data saturation occurred after analysing 12 interviews, revealing two main themes: the impact on life participation and the impact on physical and mental functioning. Participants expressed the need for comprehensive posttransplant care, including mental health support, family education and guidance on returning to work. Structured support in managing physical fitness, tailored to individual preferences, was also recognised as important.
CONCLUSIONS: The study underscores the necessity for a biopsychosocial approach to posttransplant care that addresses the multifaceted challenges faced by kidney transplant recipients. A multidisciplinary approach, tailored support, education and individualised exercise programmes are crucial for enhancing their overall well-being and integrating rehabilitation into their daily lives, considering both physical and psychosocial aspects.

UNASSIGNED: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients.
UNASSIGNED: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item.
UNASSIGNED: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach\'s α = 0.87; 95% confidence intervals [CI]: 0.83-0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54-0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50).
UNASSIGNED: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney transplant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making.

UNASSIGNED: Quality of life (QOL) among disabled children and their caregivers is an important concern in healthcare. We aim to evaluate the quality of life among caregivers of children with cerebral palsy and to observe the effects of various demographic factors and affected child-related factors on caregivers\' quality of life.
UNASSIGNED: After ethical approval and written consent was obtained from the participants. One hundred six caregivers of children with cerebral palsy from the Asir region were recruited for the study. Caregivers provided details, including their demographic characteristics, social factors, and information regarding their affected children regarding age, gender, mobility levels, etc. They also completed the Arabic version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire for assessing their QOL.
UNASSIGNED: All the caregivers were women; their mean age was 40.38 years and SD7.09, and the overall QOL mean and standard deviations were 66.38 ± 12.88. There was a moderately significant correlation between total QOL in comparison with caregivers\' educational level and mobility capacity, with R values of 0.54 (p<0.001) and 0.62 (p<0.001), respectively.
UNASSIGNED: All the subdomains of WHOQOL-BREF were found to be very closely related to the total scores for QOL. The caregivers of children with cerebral palsy had better QOL scores than the cutoff scores proposed in the WHOQOL-BREF scale. Factors such as increased mobility and education of the affected child contributed to better total QOL scores.

BACKGROUND: School attendance and life participation, particularly sport, is a high priority for children with chronic kidney disease (CKD). This study is aimed at assessing the association between CKD stage, sports participation, and school absences in children with CKD.
METHODS: Using data from the binational Kids with CKD study (ages 6-18 years, n = 377), we performed multivariable regression to evaluate the association between CKD stage, school absences, and sports participation.
RESULTS: Overall, 62% of participants played sport with the most frequent sport activities engaged in being swimming (17%) and soccer (17%). Compared to children with CKD 1-2, the incidence rate ratios (IRR) (95% CI) for sports participation amongst children with CKD 3-5, dialysis, or transplant were 0.84 (0.64-1.09), 0.59 (0.39-0.90), and 0.75 (0.58-0.96), respectively. The median (IQR) days of school absences within a four-week period were 1 day (0-1), with children on dialysis reporting the highest number of school absences (9 days (5-15)), followed by transplant recipients (2 days (1-7)), children with CKD 3-5 (1 day (0-3)), and with CKD 1-2 (1 day (0-3)). Duration of CKD modified the association between CKD stage and school absences, with children with a transplant experiencing a higher number of missed school days with increasing duration of CKD, but not in children with CKD 1-5 or on dialysis (p-interaction < 0.01).
CONCLUSIONS: Children receiving dialysis and with a kidney transplant had greater school absences and played fewer sports compared to children with CKD stages 1-2. Innovative strategies to improve school attendance and sport participation are needed to improve life participation of children with CKD.

Patient-reported outcomes (PROs) that assess individuals\' perceptions of life participation, medication adherence, disease symptoms, and therapy side effects are extremely relevant in the context of kidney transplantation. All PROs are potentially suitable as primary or secondary endpoints in interventional trials that aim to improve outcomes for transplant recipients. Using PRO measures (PROMs) in clinical trials facilitates assessment of the patient\'s perspective of their health, but few measures have been developed and evaluated in kidney transplant recipients; robust methodologies, which use validated instruments and established frameworks for reporting, are essential. Establishing a core PROM for life participation in kidney transplant recipients is a critically important need, which is being developed and validated by the Standardized Outcomes in Nephrology (SONG)-Tx Initiative. Measures involving electronic medication packaging and smart technologies are gaining traction for monitoring adherence, and could provide more robust information than questionnaires, interviews, and scales. This article summarizes information on PROs and PROMs that was included in a Broad Scientific Advice request on clinical trial design and endpoints in kidney transplantation. This request was submitted to the European Medicines Agency (EMA) by the European Society for Organ Transplantation in 2016. Following modifications, the EMA provided its recommendations in late 2020.

Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD.
Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed.
Fifty-six participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility).
There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.

BACKGROUND: Personal Energy Planning is a problem-solving based programme that guides people receiving maintenance haemodialysis treatment to use energy management strategies to address life participation challenges. The feasibility of training dialysis clinicians to become Personal Energy Planning coaches (i.e., programme administrators) is currently unknown.
OBJECTIVE: To explore the feasibility of training dialysis clinicians to administer the Personal Energy Planning programme.
METHODS: Feasibility study involving an adherence evaluation of two trained dialysis clinician coaches\' problem-solving facilitation skills, and one qualitative interview with each coach.
METHODS: Two Personal Energy Planning coaches with nursing backgrounds who administered the programme to 10 patients receiving maintenance haemodialysis treatment over a total of 34 sessions.
METHODS: Audio recordings of one session per treatment recipient (n = 10) were evaluated using an established treatment adherence checklist. The proportion of treatment sessions where the item was observed by two adherence raters was calculated. In addition, coaches were interviewed about their experiences learning and administering the programme; interviews were analysed using inductive thematic analysis.
RESULTS: Some core facilitation skills (e.g., patient-centred goal setting and analysis of performance breakdowns) were consistently used; however, other facilitation skills (e.g., guided discovery and global problem-solving strategy) were not regularly implemented. The coaches discussed challenges (e.g., supporting patient problem-solving and fluctuating patient health) with administering the intervention. Certain training resources (e.g., coaching handbook and expert consultation) were identified as valuable to their learning.
CONCLUSIONS: With modifications to training materials, it might be feasible to train dialysis clinicians to administer Personal Energy Planning with people receiving maintenance haemodialysis treatment.

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.