Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).

ABSTRACT:

Background

Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.

Objective

To develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties.

Design

Sequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology.

SUBMITTER: Braybrook D 

PROVIDER: S-EPMC11650473 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature