Thirteen categories of support needs have been described for patients with Chronic Obstructive Pulmonary Disease (COPD), in a comprehensive review of evidence that identifies the full range of support needs for patients with COPD for the first time. The review, by Dr Morag Farquhar (University of East Anglia), Dr Gail Ewing from the Centre for Family Research (Cambridge), and Carole Gardener at the Primary Care Unit in Cambridge, provides a new framework to inform those planning supportive and palliative care for those living with COPD.
COPD is a long-term 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. In order to better support these patients we need to understand what sort of things they may need help with. A large number of studies have already looked at how patients experience life with COPD and many have identified different areas in which patients describe needing more support to manage their condition. For example, we know that some patients say they would like to know more about what to expect in the future or would benefit from practical help in the home. Our review pulled together this existing evidence in order to identify the full range of support needs for patients with COPD”.
– Carole Gardener, Research Assistant, Palliative & End of Life Care Group, PCU
Thirty-one papers were included in the review and from these the researchers identified thirteen key areas of support need: (1) understanding COPD, (2) managing symptoms and medication, (3) healthy lifestyle, (4) managing feelings and worries, (5) living positively with COPD, (6) thinking about the future, (7) anxiety and depression, (8) practical support, (9) finance, work and housing, (10) families and close relationships, (11) social and recreational life, (12) independence, and (13) navigating services.
The review adds to the understanding of patient support needs in COPD, revealing, for example, that some patients may need help with exercising safely, navigating services and overcoming feelings of guilt. These resonate with the physical, psychological and social support needs of patients with other advanced diseases. But the review also has implications for the application of ‘one size fits all’ guidelines, because some of the support requirements of patients with COPD are distinct. For example, none of the studies reviewed reported patient need for support in relation to spirituality, which has been shown to be important in end of life care for conditions such as cancer. This may reflect the differing nature of the course of COPD in comparison to malignant conditions. People with COPD may perceive of themselves as living with, rather than dying from, COPD.
The review is part of a study funded by the NIHR School for Primary Care Research to develop an evidence-based tool to help patients identify and express their support needs to health care professionals. The tool underpins a proposed intervention to enable delivery of person-centred care: the Support Needs Approach for Patients (SNAP). SNAP is being developed in a collaboration between University of East Anglia and University of Cambridge, funded by Marie Curie.
Read the paper
Support needs of patients with COPD: a systematic literature search and narrative review. Carole Gardener, Gail Ewing, Isla Kuhn, Morag Farquhar. International Journal of Chronic Obstructive Pulmonary Disease. 26 March 2018
You can follow the SNAP Study Team on Twitter: @SNAPstudyteam
Media queries: Lucy Lloyd