Background The complexity of HD and its progression over time mean that those affected require the care and support of a variety of health, social and voluntary services. Recent research efforts have concentrated on measuring clinical outcomes whereas organisational and patient perspectives have been lacking. There is no consensus as to what outcomes should be used to measure and assess the success of an HD service.
Aims Firstly ImproveHD aims to identify, explore and interpret key variations in care organisation and delivery in the early and mid-stages of HD in the UK. Secondly it will identify a set of core outcomes to support consistent evaluation of different care delivery approaches.
Methods The project will draw upon a mixed methods approach including: 1) comparative organisational case studies of HD care delivery networks (n = 3) in the UK using interviews with key stakeholders and questionnaires to collect data; 2) the development of a core outcome set, which seeks opinion of different stakeholders by utilising qualitative data and consensus methods to establish what outcomes should be considered ‘core’ when evaluating care delivery in HD.
Results/Conclusion ImproveHD aims to address two issues of fundamental importance to understanding and improving the quality of care for people with Huntington’s disease (HD). An overview of the protocol and current evidence will be presented here. Particular emphasis will be placed on discussing the methodological challenges and different theoretical approaches considered when exploring organisational context and developing core outcomes for organisational interventions within the framework of quality improvement.
- Care Delivery
- Organisational Case Study
- Core Outcome Set