People with COPD feel independent and enjoy support from family and friends with good access to amenities when healthcare and social support works well, reports a study which investigated what matters to people with COPD.
However where this support does not work well people report difficulties with some aspects of the healthcare system.
For the study, published in NPJ Primary Care Respiratory Medicine, 40 patients took part in one-to-one discussions to identify what was working well, not working well and what was important for the future in terms of their COPD care. The responses were analysed in two one-day co-production workshops involving COPD patients, carers and professionals.
The difficulties that were voted as the highest priorities and that really mattered to patients included feeling that ‘the right hand does not know what the left hand is doing’, that appointments were not available when they wanted them and that they were not always treated as a person. Other high priority issues included managing the impact of COPD on their lives: not being able to do what they wanted to do; feeling anxious and depressed and not being able to eat well.
Looking to the future, it was important to people to have continued healthcare and social support, in particular to be treated with respect, to be able to stay healthy, confident and independent and to maintain social and family contact.
Professionals who took part in the workshops reported that they gained a new understanding and appreciation of the difficulties that patients faced and benefited from learning first-hand about the realities of patients’ lives.
The researchers conclude: “A range of issues mattered to people living with COPD, encompassing not just health-related issues but also meaning, purpose and relationships, as well as ease of access to health services and the importance of being treated as a person. The findings add support to previous work in this area and underline the importance of a personalised, patient-centred, holistic approach to healthcare for people with COPD. It is suggested that improvements at both patient-clinician level and system level will be necessary to achieve this.”
Amanda Roberts, a member of the PCRS Lay Reference Group said: “One of the striking things from this study is the unexpected first-hand knowledge gained by the participating health care professionals about the impact of COPD on everyday living."
Barbara Preston, another member of the group said she hoped that clinicians would take note of the findings of this research.