Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale (CPOS-2): a qualitative pilot study.

Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children’s Palliative Outcome Scale (CPOS. Design: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. Setting/subjects: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison t... Mehr ...

Verfasser: Friedel, Marie
Brichard, Bénédicte
Boonen, Sabine
Tonon, Corinne
de Terwangne, Brigitte
Bellis, Dominique
Mevisse, Muriel
Fonteyne, Christine
Jaspard, Maud
Schruse, Marie
Harding, Richard
Downing, Julia
Degryse, Jean-Marie
Aujoulat, Isabelle
Dokumenttyp: Artikel
Erscheinungsdatum: 2020
Verlag/Hrsg.: Mary AnnLiebert
Inc. Publishers
Schlagwörter: Belgium / children / instrument / outcome assessment / patient-centered outcome measures / pediatric palliative care / pilot test / quality of life
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-28944341
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : http://hdl.handle.net/2078.1/231142

Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children’s Palliative Outcome Scale (CPOS. Design: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. Setting/subjects: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region. Measurements: During semistructured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Conclusions: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.