What really matters to patients living with chronic obstructive pulmonary disease? An exploratory study

Abstract

There is limited published research into what really matters to people living with chronic obstructive pulmonary disease (COPD). Most previous research in this area focuses on the impact of the symptoms of COPD, rather than on the issues defined as important by patients themselves. This paper describes an exploratory study investigating what is most important to people living with COPD. A qualitative approach employing in-depth interviews with COPD patients was chosen. Thematic analysis was used to code and categorize data. Six patients with 'moderate' to 'very severe' COPD were recruited. They considered engagement in specific activities to be very important (walking, household maintenance and driving), even though these activities were mainly centred around the home environment, or within confined spaces, due to their physical limitations. This restriction led to feelings of social isolation that these patients tried to overcome through social participation (holidays, social interaction). People with COPD often experience physical restrictions, which can lead to reduced community mobility and social isolation. In this study, despite their physical limitations, these patients had a strong desire to participate and be engaged in various activities. The importance of enabling patients to 'participate' rather than just 'do' should be considered when planning and delivering patient-centred interventions across the whole spectrum of severity of COPD.

Effects of telephone health mentoring in community-recruited chronic obstructive pulmonary disease on self-management capacity, quality of life and psychological morbidity: a randomised controlled trial

“…The apparent benefit from brief regular phone contacts was unexpected but may relate to the impact of personal contact in the light of the known social isolation often imposed by COPD 13 31. While it is possible that we were merely seeing regression to the mean with this change, this is unlikely as there is generally progressively worsening QOL29 and psychological morbidity in COPD 32.…”

“…In Australia, the Lung Foundation estimates that only 1% of people with COPD who could benefit have access to rehabilitation 12. Qualitative research in COPD suggests that self-management support should be community based and patient centred,13 but capacity constraints in primary care restrict wider delivery to meet the need 14. Health mentoring, a partnership between a patient and a health professional in which self-management strategies for chronic disease prevention and management are developed collaboratively, has been shown to improve QOL in patients following COPD exacerbation 15.…”

Living in negotiation: patients’experiences of being in the diagnostic process of COPD

“…Previous research leads to the conclusion that the COPD diagnosis has a great impact on people’s lives, and is a source of suffering for the individual 20,21,24. To date, qualitative COPD research has been focused on challenges met in severe stages of COPD 28–31. Surprisingly few studies with a qualitative approach focus on patients’ experiences of the diagnostic process or early stages of the disease.…”

The importance of clinical management problems in older people with COPD and asthma: do patients and physicians agree?

“…23,24 Dyspnoea and physical limitation are known to be both disabling and important to patients. 3,25 This study presents reassuring data suggesting that concordance does exist between physicians and patients in these important life-limiting impacts. Further, knowledge that dyspnoea and activity limitation are important to patients, 3,25 and that the associated poor health outcomes are important factors to clinicians who manage patients, [22][23][24] suggests that these results have external validity when examining the importance and concordance of these problems.…”