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The purpose of this phase was to understand the impact of long-term health conditions on people’s lives and what people want and need from different services (health, social care and community services). It was intended that this information would inform the questionnaire for use in health and social care services. 

Results

Forty-two people with at least one of the following long-term conditions have taken part in a semi-structured interview: depression, diabetes, cancer, coronary heart disease, chronic obstructive pulmonary disease, multiple sclerosis, inflammatory bowel disease, osteoarthritis, and stroke. In addition, six interviews from a study on treatment outcomes in schizophrenia have been included in the data-set. These long-term conditions were chosen via a consultation process involving researchers working in the field of PROMs and/or long-term conditions and people from the QORU Public Involvement and Implementation Group (http://www.qoru.ac.uk/about/public-involvement/implementation-group-piig/). These conditions were chosen as they offer a diverse range in terms of prevalence, burden of disease, impact on quality of life, illness trajectories, and health and social care needs. 

The results from these interviews have been analysed and have informed the development of a 23-item LTC questionnaire. Outputs from this study are under preparation and the results from this study will be disseminated at local, national and international conferences throughout 2015. Key findings are outlined below:

  • The idea of a PROM across long-term conditions was valued.
  • A range of dimensions were valued, including social participation, mental wellbeing, safety, physical activity, self-management, coping, being in control of their daily lives, independence and not being a burden, social support, stigma, support from services, burden of treatment and services.       
  • Participants thought a PROM could prompt self-reflection on their health, enable more open and collaborative dialogue with practitioners, improve practitioners’ comprehension of their needs, and aid their problem-solving in collaboration with practitioners. 

•            Concerns were raised around whether and how a questionnaire would be used, mentioning issues such as time constraints on consultations and budget cuts to services.

Living with long-term conditions