Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases

To the Editor:

Despite the fact that pulmonary rehabilitation (PR) is the most powerful nonpharmacological intervention to improve the symptoms, exercise capacity and quality of life of people living with chronic lung disease [1], fewer than 2% of eligible patients enrol [2, 3]. While preparing a joint American Thoracic Society (ATS)/European Respiratory Society (ERS) Policy Statement on pulmonary rehabilitation [4], we developed a survey to better understand patients' perspectives on PR, and to identify challenges faced both by patients who have taken part in PR and those who might be eligible but have not had the opportunity. The survey was disseminated via the European Lung Foundation/ERS and ATS Public Advisory Roundtable professional patient networks, and via the COPD Foundation and Pulmonary Fibrosis Foundation to patients with a wide range of chronic lung diseases. The survey was available online from July, 2014 to November, 2014 in 10 languages (Dutch, English, Flemish, French, German, Greek, Italian, Polish, Portuguese and Spanish). Responses were received from 1685 people (73% female) with self-reported chronic lung disease in 29 countries (USA: 71.1%; Europe: 27.4%; others: 1.5%) and were included in the analyses (table 1).

A majority of patients were 61 years of age or older (54.7%). 92% of respondents thought that PR should be a part of healthcare services available to all patients that might benefit, yet 46% of respondents had never taken part in a PR programme. 60% reported having experienced challenges to taking part in PR (table 1). Approximately two-fifths of respondents reported that their healthcare provider had never told them about PR, or the benefits of PR for people living with chronic lung disease. 18% felt they did not have enough information to decide about participating or were not sure it would help them. Nearly one-fifth of respondents faced logistical challenges, such as no PR service available or lack of insurance coverage. Emotional challenges were also an obstacle to participation.

Of the respondents who had participated in PR, most had heard about it through their healthcare provider (table 1). A majority of these individuals reported improvements in physical functioning in daily life, mood or sense of emotional wellbeing, knowledge about their lung condition, control of symptoms, social functioning, or a combination thereof (table 1). PR participants were asked to respond to the question “What would you say to someone considering attending a PR session for the first time?”. Representative responses included: “Absolutely do it!”, “A must!”, “It allows you to move around and breathe better”, “Absolutely go all in!”, “Be open about your symptoms and condition”, “Begin as soon as possible”, “Best thing I ever did to help manage this disease”, “Don't be a damn fool – go and help yourself”, “Don't be scared”, “It will change your life”, and “It works!”. None of the respondents made negative comments or recommended against participation in PR. Patients who had participated also offered suggestions as to how to improve the PR experience. Representative suggestions included having PR facilities closer to home, having appropriate funding and lower “out of pocket” costs, a longer duration of PR programme or the opportunity to do two PR programmes per year, opportunity to transition to a maintenance programme, having the option for PR sessions during evenings or the weekend days, addition of yoga and/or meditation to the PR programme, and the importance of individualisation of the PR programme to each patient's condition (including the educational component and need for staff to have knowledge of respiratory disorders other than chronic obstructive pulmonary disease (COPD)). Notably, three-fifths of respondents reported that they experienced one or more challenges to taking part in PR.

In 2015, the official ATS/ERS policy statement on enhancing implementation, use and delivery of pulmonary rehabilitation highlighted the need to increase patients' and healthcare providers' awareness and knowledge of PR, as well as to increase patients' access to PR [4]. For example, it was recommended that professional societies and patient advocacy and education experts develop education materials for people living with chronic respiratory disease regarding the process and benefits of PR. Public awareness campaigns are also needed. The current survey data confirms the need for greater healthcare professionals' knowledge and awareness of PR to foster patient referrals, and for new PR services to reduce travel distance and transportation problems, for increased insurance coverage for PR, and expanded PR services that do not focus solely on COPD.

Our survey-based study has some limitations. Given that the majority of respondents were from Europe and North America, the generalisability of our findings to other first world and/or developing countries is unknown. Moreover, the participation and engagement of many of our respondents in patient networks and health societies might have introduced bias into the survey findings, since these individuals may have been especially motivated to take control of and manage their respiratory disease. Future efforts to learn more about the perspectives of individuals from other countries underrepresented in the present survey, and those not engaged in patient networks or health societies would be both informative and beneficial.

In keeping with the ATS/ERS policy statement on PR [4], however, this survey demonstrates clearly that people with chronic lung diseases in Europe and the USA want to learn about and be able to participate in PR, yet are often unaware of it, its benefits or lack access to it. Importantly, these findings are probably “the tip of the iceberg”, since only people with computer and internet access could respond to this survey. Referrals, access to and uptake of PR are likely significantly further diminished among those from more remote, under-served or poverty-stricken areas [5]. We believe this is an important healthcare disparity that should be addressed by healthcare providers and health systems in the years to come.