Objectives Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson’s services and drive improvements.
Methods A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson’s disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds.
Results A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains (‘Structures and processes of care’, ‘Preparing for the end of life’, ‘ Care in the last weeks of life’ and ‘Care in the last days of life’) underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning.
Conclusions The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.
- end of life care
- neurological conditions
- service evaluation
- supportive care
- chronic conditions
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
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Contributors AR, with guidance from EWR, ST and BW, conceptualised and developed the project. Data collection from the focus group was performed by AR. Thematic analysis of the focus group and development of the initial statements was performed by AR and SAT. The Delphi survey was written by AR. Data analysis of the Delphi survey results was performed principally by AR, with contribution from EWR, ST and BW. The primary report was authored by AR with editing and review by EWR, ST and BW.
Funding Author AR completed this study as part of her Academic Foundation Programme.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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