Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation
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Lucy Coombes1,2, Daney Harðardóttir1, Debbie Braybrook1
1King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
Insights
Developing a validated outcome measure for pediatric palliative care is crucial. This study involved diverse stakeholders, revealing differing priorities between children, parents, and professionals to ensure content validity.
Area of Science:
- Pediatric Palliative Care
- Outcome Measurement Development
- Health Services Research
Background:
- No validated outcome measure exists for pediatric palliative care globally, outside sub-Saharan Africa.
- Stakeholder involvement is essential for establishing face and content validity in outcome measures.
- Existing measures may not adequately capture the diverse needs of children with life-limiting conditions.
Purpose of the Study:
- To achieve expert stakeholder consensus on essential items for a pediatric palliative care outcome measure.
- To establish face and content validity for a new pediatric palliative care outcome measure.
- To inform the development of a culturally relevant and comprehensive outcome assessment tool.
Main Methods:
- Two-phase study following patient-reported outcome measure (PROM) development guidelines.
- Phase 1: Three-round modified Delphi survey with parents and professionals (n=82).
- Phase 2: Item generation meeting with bereaved parents, clinicians, and academics, including consultation with a young person's advisory group (n=22).
Main Results:
- Delphi survey showed increased consensus (Kendall's W from 0.17 to 0.61), but poor agreement between professionals and parents (Cohen's kappa 0.13).
- Professionals prioritized physical symptoms, while parents prioritized psychosocial and practical concerns.
- Children emphasized 'normal life' aspects, differing from adult priorities. Five child and proxy-reported versions of the C-POS (13 items) were drafted.
Conclusions:
- Involving diverse stakeholders (children, parents, professionals) is vital and feasible for PROM item generation.
- Significant differences in prioritized outcomes highlight the need for a nuanced, stakeholder-informed measure.
- The study successfully drafted initial versions of a pediatric palliative care outcome measure, C-POS, addressing identified gaps.
Background:
There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity.
Aim:
To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity.
Design:
This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person's advisory group was also consulted on priority outcomes.
Setting And Participants:
Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person's advisory group: young people age 10-20 years. Item generation meeting: bereaved parents, academics and clinicians.
Results:
Phase 1: Delphi survey (n = 82). Agreement increased from Kendall's W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen's kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children (n = 22) prioritised items related to living a 'normal life' in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted.
Conclusions:
This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.
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