Exploring experiences and health-related quality of life of caregivers of patients who start home dialysis: study protocol for a prospective, multicentre cohort study

Exploring experiences and health-related quality of life of caregivers of patients who start home dialysis: study protocol for a prospective, multicentre cohort study

IntroductionStarting dialysis not only has a major impact on the life of patients but also on their informal caregivers. Previous research shows greater burden and lower quality of life among caregivers of dialysis patients compared with the general population. Unfortunately, the evidence on the cou...

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Bibliographic Details
Published in:BMJ open Vol. 12; no. 11; p. e064172
Main Authors: van Lieshout, TS, Vonk, S, Driehuis, E, Roeterdink, AJ, Goto, NA, Vogels, TJFM, Kooijman, WCS, Bart, JAJ, Broese van Groenou, MI, van Jaarsveld, BC, Abrahams, AC
Format: Journal Article
Language:English
Published: England British Medical Journal Publishing Group 10-11-2022
BMJ Publishing Group LTD
BMJ Publishing Group
Series:Protocol
Subjects:
Adult
Caregivers
Clinical outcomes
Cohort analysis
Cohort Studies
Dialysis
End stage renal failure
Hemodialysis
Hemodialysis, Home
Humans
MENTAL HEALTH
Multicenter Studies as Topic
Observational Studies as Topic
Patients
Peritoneal dialysis
Personal development
Prospective Studies
Quality of Life
Questionnaires
Renal Dialysis
Renal Medicine
Responsible persons
Systematic review
MENTAL HEALTH
Dialysis
End stage renal failure
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Summary:IntroductionStarting dialysis not only has a major impact on the life of patients but also on their informal caregivers. Previous research shows greater burden and lower quality of life among caregivers of dialysis patients compared with the general population. Unfortunately, the evidence on the course of both positive and negative experience in caregivers of incident dialysis patients is scarce. Furthermore, well-designed, prospective, multicentre studies comparing caregiving of home dialysis patients with in-centre dialysis patients are lacking. This paper proposes a protocol to assess the trajectory of experiences (both positive and negative) and quality of life of caregivers of home dialysis patients compared with caregivers of in-centre dialysis patients.Methods and analysisThis paper presents a protocol for a prospective, observational, multicentre cohort study which extends the ongoing Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). This study will include at least 200 adult caregivers of patients who start dialysis therapy and have been included in the DOMESTICO study. Positive experiences of the caregivers will be the primary outcome parameter of this study, and negative experiences and health-related quality of life the secondary outcome parameters. Required support will be investigated as an exploratory finding. Outcome parameters will be assessed at baseline, and at 6 and 12 months after start of dialysis using validated questionnaires.Ethics and disseminationEthical approval for this study has been obtained from the Medical Research Ethics Committee of the Amsterdam University Medical Centre. The results of this study will be disseminated by publication in a peer-reviewed journal and through presentations at conferences and seminars.
Bibliography:Protocol
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ISSN:2044-6055
2044-6055
DOI:10.1136/bmjopen-2022-064172