Title: Optimising palliative care for older people in the community: development and evaluation of a new short term integrated service
Funder: Department of Health (England)

Abstract: Background People are living longer and dying with frailty and, for many, increasingly complex co-morbidities and health needs. Palliative care is advocated for older people to improve the quality of life, but with little evidence of effectiveness 4 5 6. This study intends to work with NHS staff in a community trust to develop and evaluate a new STIPC service for frail older people with complex needs living at home or in a care home. Short-term palliative care could be cost effective and appropriate because it relies on existing community services, but with additional shared support from specialist palliative care (SPC) services at points of actual or anticipated decline in wellbeing and uncertain outcome. Aims The study’s primary aim is to develop and evaluate the STIPC service for frail older people living at home or in a care home. The service is delivered through integrated professional working (IPW) between SPC services and community nursing teams, and GPs and geriatricians as main providers of care. This is a feasibility study to develop procedures for a full RCT. The secondary aims pertain to: developing the methodology for a full RCT and a model of IPW between generalist and specialist nurses. The project uses two phases: phase I developing the intervention (objectives 1-2); and phase II feasibility of the intervention (objectives 3-5). To develop the new STIPC service using a post-bereavement postal survey to relatives/carers on preferences of care and palliative outcomes for older people by place of death To consult with stakeholders (e.g. recipients and providers/commissioners of care) on the survey findings and identify the STIPC components and outcomes. To develop the methodology for a future full RCT by testing procedures in order to calculate sample size, manage attrition and missing data, and to guide future assessment of the cost-effectiveness of the service. To refine the intervention for the full RCT and a model of IPW, using nested qualitative studies exploring experiences of a) service receipt to attain personal goals and b) barriers and facilitators to IPW. To test the impact of STIPC on the primary outcome of palliative outcomes (POS-8), and secondary outcomes of symptom management (POS -S), carer burden (Zarit Carer Burden Inventory), carer mastery (Lawton caregiver mastery scale), and service use (CSRI). Plan of investigation The research methods follow the MRC guidance to develop and evaluate complex interventions 7. The study uses two phases: Phase 1 intervention development using a post-bereavement survey to model preferences for care, palliative care outcomes and service use by place of death; and a stakeholder consultations on the findings to develop the intervention with 1) older people and their carers, and 2) representatives from service providers, commissioners, and voluntary sector using Transparent Expert Consultation (TEC) of nominal group to generate recommendations and identify divergence, and on-line/postal survey to prioritise the intervention components and outcomes3. Phase 2 feasibility and procedures to develop the methodology for a full RCT with 52 participants randomly allocated to receive STIPC or usual care. The primary outcome is the impact on palliative outcomes, and secondary outcomes on symptom management, carer burden and service use assessed at baseline, 6 and 12 weeks. Nested qualitative studies at intervention completion to examine experiences of service receipt (n=12) and barriers and facilitators to IPW (n=16). Potential impact Improving older people’ access to palliative care services could impact on patients’ and cares’ quality of life and reduce NHS costs. This is a feasibility study that if found beneficial will develop procedures for full RCT, and a refine model of integrated professional working, or if negative inform future interventions and service developments.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE