Hi Frances, welcome to Respiratory Futures and thank you for speaking to us about your work on pulmonary rehabilitation.
You have recently presented an overview of findings from a number of systematic reviews looking at the factors affecting patient participation, or non-participation, in pulmonary rehab. Could you describe your approach?
I prepared a narrative overview to present at a meeting of the British Lung Foundation. I wanted to draw attention to common themes and factors that impact on whether a person attends and completes pulmonary rehabilitation (PR). The 5 reviews included different methods and slightly different aspects of the topic; from patient experience of PR, patient knowledge and beliefs about PR, to the practical factors that prevent attendance.
From your work, what would you say are the main factors that act as barriers to attendance?
One theme that was found repeatedly across the reviews was travel, transport and location. Other factors of a practical nature included disruption to routine and competing priorities e.g. holidays or prior commitments. A previous negative experience of PR, negative comments from friends and family or a negative experience of the referral process were seen to deter attendance.
Referrers need to be ready to address perceptions about being too ill or not ill enough
GPs were sometimes seen as a dissuading factor rather than encouraging attendance, especially if they did not have enough knowledge about PR or its benefits to support patients in making a decision to attend.
Lack of perceived benefit was a factor, with patients often reporting perceiving themselves as either too unwell or too well to benefit from PR, or concern that exercise would be detrimental to health. Current smoking and living alone have a negative impact on attendance.
Similarly, what factors affect non-completion and dropping out?
Travel and transport were again identified as factors, along with a failure to see quick improvements or to perceive oneself as affected by the condition. Finding the programme physically challenging and a dislike of group exercise were also issues. Depression was highlighted by more than one study, and exacerbations, illness and comorbidities were also cited. The 2015 national audit of PR programmes also found that exacerbations, illness and comorbidities were frequently cited as a reason for non-completion and, to a lesser extent, other commitments. Current smoking was associated with non-completion.
Current smoking appears to be associated with attendance and non-completion, so an approach that teams PR referral with referral to smoking cessation service may be of benefit.
Patients who had a negative experience of the programme were less likely to complete. Lack of encouragement, lack of inhaler education or lack of counselling were identified as reasons for a negative experience.
Short programme duration, and fear of the future after witnessing more disabled members of the group, were also associated with a negative experience of PR.
What are the reasons people give for attending and how can we learn from/draw on these perceptions?
An effective and positive referral conversation, e.g. with own GP, or other trusted advice, was influential in the decision to attend PR, along with a desire to gain control of their condition and a perception that PR could help them do this. People who attended PR also saw it has having a social benefit e.g. “a reason to get out of the house” as well as health benefits. Other factors that were identified as influencing attendance included: positive past experience of PR, increased disease severity and a view that PR should be prioritised over other obligations.
Getting the message across about the benefits of PR at the outset is clearly very important – referrers need to be ready to address perceptions about being too ill or not ill enough, and reinforce the message that PR can help people gain control of their condition and lead to health benefits in terms of exercise capacity and general health status. Management of patient expectations in terms of the amount of effort involved and how long it may take before benefits are seen would also seem to be important.
What are ‘quick wins’ that would make the greatest difference to patient/PR outcomes that clinicians could focus on?
At the referral stage an enthusiastic and knowledgeable healthcare professional who can communicate the benefits can make a big difference. Also, current smoking appears to be associated with attendance and non-completion, so an approach that teams PR referral with referral to smoking cessation service may be of benefit. People who live alone may need extra support and encouragement to attend.
On a practical level, programmes that allow patients to meet existing commitments such as holidays but still continue with a full programme i.e. rolling programmes, may also be helpful.
Thank you for joining us, Frances.
Cox et al. 2017. Pulmonary rehabilitation referral and participation are commonly influenced by environment, knowledge, and beliefs about consequences: a systematic review using the Theoretical Domains Framework. Journal of Physiotherapy 63 84–93
De Sousa Pinto et al 2013. Chronic obstructive pulmonary disease patients’ experience with pulmonary rehabilitation: A systematic review of qualitative research. Chronic Respiratory Disease 10(3) 141-157.
Keating et al 2011. What prevents people with chronic obstructive pulmonary disease from attending pulmonary rehabilitation? A systematic review. Chronic Respiratory Disease 8(2) 89–99
Mathar et al 2015. Why Do Patients with COPD Decline Rehabilitation? Scand J Caring Sci. 2016 Sep;30(3):432-4
Sohanpal et al 2015. Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory. Primary Care Respiratory Medicine 25 15054.