Towards improvement in care delivery in Huntington's Disease (HD)
Research type
Research Study
Full title
Towards Improvement in Care Delivery in Huntington's Disease (HD): ImproveHD
IRAS ID
192587
Contact name
Daniela Rae
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
2 years, 4 months, 30 days
Research summary
Huntington’s disease (HD) is an inherited condition that causes a progressive breakdown of brain cells. This leads to a decline in thinking abilities, changes in personality and behaviour, involuntary movements and swallowing problems. Care delivery in HD is complex and requires the involvement of a number of health care, social care and voluntary sector workers and professionals, such as doctors, nurses and care managers. My previous research highlighted that patients’ decisions regarding their care are influenced by their previous experiences of HD. Patients reported that they feel that care delivered in HD should be personalised, timely and forward planning, keeping in mind future needs. Although a recommended care model has been described (Appendix 1), the way how services are organised on a national and international level is not. It is not known how such organised care delivery actually impacts upon patient care, especially in the early stages of the disease. Furthermore there is professional uncertainty about ’what and how’ to measure and to appraise effectiveness of the delivery of HD services. Most previous research efforts have concentrated on clinical measures of the disease progression such as involuntary movements, thinking abilities and behavioural problems. These neglect other factors that may be very important to patients and families as well as professionals, such as consistent and timely care (get the help I need when I need it), being able to engage in meaningful activities in daily life or being involved in setting own goals and share responsibilities of decision making regarding care.
In order to learn, understand and, in future, influence how services in the early stages of HD are organised and how agencies work together to deliver high quality care, this project will aim to explore such issues from the perspective of patients, the professionals involved in their care and managers making decisions about funding care services. Most importantly patients will be key in shaping a main set of measures including organisational and ‘patient-centred’ concepts that matter to them. It is envisaged that these measures will become ‘core’ to evaluation of effectiveness of care organisation and delivery in HD. The findings of this project will provide an in depth assessment of how services work in different areas of the UK, identifying areas of innovation in care delivery and, for the first time, developing a set of outcomes that is able to evaluate care beyond the clinical health outcomes that research is currently focused on.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
16/WM/0211
Date of REC Opinion
21 Apr 2016
REC opinion
Favourable Opinion