Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ)

Health and Quality of Life Outcomes

Lesley-Anne Carter¹  Sandip Mitra²  Suzanne M. Skevington³  Currie Moore³  Alison Wearden³ 

[1] Division of Population Health, Health Services Research and Primary Care, University of Manchester, Manchester, UK;Manchester Academic Health Science Centre, University of Manchester, Manchester, UK;Manchester University NHS Foundation Trust, Manchester, UK;NIHR Devices for Dignity, MedTech Cooperative, Sheffield, UK;School of Health Sciences, Division of Psychological Sciences and Mental Health, Manchester Centre for Health Psychology, Coupland Building I, University of Manchester, Oxford Road, M13 9PL, Manchester, UK;Manchester Academic Health Science Centre, University of Manchester, Manchester, UK;

关键词: End stage renal disease;    Cognitive interview;    Measure;    Development;    Expectations;    Acceptance;    Relationship;    Couples;    Dialysis;   

DOI  :  10.1186/s12955-020-01610-x

来源: Springer

【 摘 要 】

BackgroundThe transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs.MethodsData from semi-structured interviews with patients and their partners (n = 22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n = 5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n = 83 couples).ResultsThree themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains.ConclusionsThe SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis.

【 授权许可】

CC BY