Accessing medicines at end-of-life: a multi-stakeholder, mixed method evaluation of service provision

This study aims to evaluate patient and carer access to medicines for symptom control at end-of-life, to help us identify areas for service intervention and workforce development. We expect that our findings will stimulate and inform changes to healthcare policy, clinical commissioning, service organisation, practice delivery, education and training.

Background

People in the last year of life require medicines for control of symptoms and recent evidence confirms that effectively managing medicines at the end-of-life is a priority for patients and carers. Medicines access (prescription, dispensing, supply and associated information giving about medicines and access to medicines) is often experienced by patients and carers as difficult, complex, demanding, lacking co-ordination and involves a multiplicity of professionals.

Our study aim is to provide an evaluation of patient and carer access to medicines at end-of-life within the context of current services. This will enable us to generate service recommendations that result in responsive, person-centred, co-ordinated medicines access, together with the identification of factors that will embed recommendations into routine practice.

Objectives

Produce a critical overview of existing research on experiences and outcomes of medicines access within end-of-life service delivery
Undertake a large scale survey to evaluate end-of-life care professionals’ current practices, identify factors influencing professionals’ contributions, and provide an overview of current service delivery models
Evaluate patient and carer experience of medicines access within end-of-life service delivery
Estimate the cost-effectiveness of service delivery models
Map patient access to medicines pathways at end-of-life, including timelines of problems, decisions, actions and use of services
Identify barriers and facilitators to maximising contributions of the nurse and pharmacist workforce to medicines access at end-of-life
Interview community pharmacists, wholesalers and distributors to evaluate supply chain processes and identify challenges in providing access to end-of-life medicines
Convene an expert consensus-building workshop to review study findings and generate recommendations on key characteristics of end-of-life service delivery that result in responsive, person-centred, coordinated medicines access
Identify service delivery models to evaluate in a follow on study, comparing the effectiveness and cost-effectiveness of the models
Methods

Phase 1: Systematic review of research evaluating medicines access experiences, influences and outcomes across a range of different end-of-life service delivery models.

Phase 2: On-line questionnaire surveys of community-based healthcare professionals (general practitioners, community nurses, palliative care clinical nurse specialists and pharmacists) practising in end-of-life care contexts.

Phase 3: In-depth, contextual evaluation of medicines access experiences, service costs and outcomes in different end-of-life service delivery models, drawing on multiple stakeholder perspectives within six embedded, mixed method case studies. We will then undertake a cross-case comparison of medicines access experiences, and conduct an economic evaluation of these vs. standard care. The mixed method case study methodology includes:

10 patients +/- carers per case study site (face to face/telephone interviews at 3 data points and 4 weeks of medicines access experiences via patient/carer recorded logs).
5 healthcare professionals interviewed for every patient in each case study.
Retrospective case note review (n=40) utilising annotated timelines as the method of analysis
Phase 4: Survey using telephone interviews with 20-30 community pharmacists and approximately 10 key pharmaceutical wholesalers and distributors to evaluate supply chain processes and identify challenges in providing access to end-of-life medicines.

Phase 5: A consensus-building workshop, with invited end-of-life care national experts, to: review study findings; generate recommendations pertaining to end-of-life service delivery model characteristics that result in responsive, person-centred, coordinated medicines access, and identify and/or construct models to evaluate in a follow on study.