Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools.

INTRODUCTION: Caregiver burden is a significant issue in the care of patients with advanced kidney disease. Its assessment is crucial for evaluating the needs of caregivers and for the development of interventions to support them. Several instruments have been developed to measure caregiver burden in these patients. However, the measurement properties of these instruments have not been systematically reviewed. METHODS AND ANALYSIS: This systematic review will include a comprehensive search of databases including PubMed, CINAHL, Embase, Cochrane Library, SCOPUS and Web of Science by using keywords and MeSH terms to identify relevant studies starting from each database inception to 1 January 2024 and covering papers in English. The search strategy will combine relevant keywords and database-specific subject headings related to the following concepts: (1) caregivers, (2) burden, stress, distress, (3) chronic kidney disease, end-stage kidney disease, dialysis. Reference lists of eligible articles will also be hand searched. We will include quantitative and qualitative studies evaluating measurement properties of instruments assessing caregiver burden in caregivers of adult patients (aged ≥18 years). Data will be extracted from the selected studies and analysed using the COnsensus-based Standards for the selection of health Measurement INstruments checklist as the study quality assessment tool. Subsequently, the van der Vleuten utility index will be used to critique and categorise the instruments. A narrative that synthesises the utility of all instruments will be presented along with recommendations for the selection of instruments depending on specific clinical contexts. This systematic review will provide an overview of the measurement properties of available instruments, including discussion on reliability, validity and responsiveness. Results from the review may give rise to the subsequent development of most appropriate instrument that could be applied to the assessment of caregiver burden in advanced kidney disease. ETHICS AND DISSEMINATION: Ethics approval is not required as this study will merely synthesise data from published studies. The results will be disseminated through peer-reviewed publications as well as conference presentations. PROSPERO REGISTRATION NUMBER: CRD42023433906.

Long-term effects of transabdominal electrical stimulation in treating children with slow-transit constipation.

AIMS: Transcutaneous electrical stimulation (TES) was used to treat children with slow-transit constipation (STC) for 1 to 2 months in a randomized controlled trial during 2006 to 2008. We aimed to determine long-term outcomes, hypothesizing that TES produced sustained improvement. METHODS: Physiotherapists administered 1 to 2 months of TES to 39 children (20 minutes, 3 times a week). Fifteen continued to self-administer TES (30 minutes daily for more than 2 months). Mean long-term follow-up of 30 of 39 patients was conducted using questionnaire review 3.5 years (range 1.9-4.7 years) later. Outcomes were evaluated by confidence intervals or paired t test. RESULTS: Seventy-three percent of patients perceived improvement, lasting more than 2 years in 33% and less than 6 months in 25% to 33%. Defecation frequency improved in 30%. Stools got wetter in 62% after stimulation and then drier again. Soiling improved in 75% and abdominal pain in 59%. Laxative use stopped in 52%, and 43% with appendicostomies stopped washouts. Soiling/Holschneider continence score improved in 81% (P = .0002). Timed sits switched to urge-initiated defecations in 80% patients. Eighty percent of relapsed patients elected to have home stimulation. CONCLUSION: TES holds promise for STC children. Improvement occurred in two thirds of children, lasting more than 2 years in one third, whereas symptoms recurred after 6 months in one third of children.