Object: This presentation will share lessons learnt from setting up a Department of Health funded, longitudinal study of approximately 500 older people with heart failure and their nominated family carers recruited from GP practices in four areas of the UK chosen to maximise sociodemographic variability (geographical location, urban/rural mix, socioeconomic status, presence/absence of former heavy industry, retirement area). The overall aim of this study is to explore the palliative care needs of this patient group.
Methods: Participants in this study are completing quality of life, symptom and service use questionnaires at 3-monthly intervals for 12 months, or until the patient dies (in these cases the carer will receive the VOICES questionnaire). A sub-set of purposively sampled participants are participating in semi-structured interviews and focus group discussions are being held with primary care professionals.
Results: Four key issues will be addressed. Firstly, the process of securing ethical approval for the study and the concerns of ethical review bodies will be discussed - for example, ensuring adequate data collection, but not overly burdening patients. Secondly research within primary care settings is known to be difficult and practical strategies which have promoted successful recruitment within this study will be presented, including adopting a systematic approach, the identification of a liaison contact within GP practices, and regular site visits. Thirdly, issues specific to engaging research participation from people with heart failure will be presented, including the use of diagnostic terminology, given that most patients with heart failure do not identify with this specific diagnosis. Finally, strategies used to maximise participation from this group of older people with chronic health problems will be presented.
Conclusions: This discussion will help other researchers planning similar studies within palliative care.