Towards person-centred care: development of a patient support needs tool for patients with advanced Chronic Obstructive Pulmonary Disease (COPD) in primary care

Chronic Obstructive Pulmonary Disease (COPD) is a long-term lung condition that shortens people’s lives. People with advanced COPD have severe breathlessness and face difficulties in daily living. COPD also affects family members and friends who provide care and support. We know that patients have unmet care and support needs in advanced COPD. We also know some of the reasons why these needs are unmet. Patients’ contacts with the health service are often brief and about responding to problems such as lung infections: they rarely provide opportunities to identify and discuss support needs. Even if there was more time for these conversations studies have found that patients have difficulty expressing their support needs: they are uncertain what they can ask about. Clinicians cannot rely on patients telling them their concerns. If we provided patients with a brief tool to complete (a very short form, with tick boxes), it might act as a prompt to patients, helping them to consider and express their support needs. The patient-completed tool could then be used by clinicians to start a conversation with the patient about their support needs and how they might be met. A similar tool developed for carers is being successfully used in clinical practice. This study will develop such a tool for patients with advanced COPD using three types of information on support needs: (1) data already collected in interviews with advanced COPD patients, (2) findings of other studies of support need in advanced COPD and (3) new data from patient focus groups. We will then work with stakeholders (patients, carers, and health care professionals) to ensure the tool is suitable for patients and for clinical practice. By enabling conversations between patients and clinicians about support needs the tool could help avoid crises, which would help patients, carers, and the health service.

Amount awarded: £36,192