Meaningful patient education: How can pulmonary rehabilitation help to bridge the gap for those with interstitial lung disease?

Abstract

Interstitial lung disease (ILD) is a heterogeneous group of lung disorders associated with exertional dyspnea, hypoxemia, which is often worse with activity, and deconditioning. There is growing evidence supporting the implementation of pulmonary rehabilitation (PR) as an effective and safe intervention for patients with ILD. 1 However, despite the recommendations from quality standards to support PR, 2 programs devised specifically for patients with ILD are as yet uncommon in the United Kingdom. Nevertheless, the general feeling is for the need for further research to justify PR being available as a standard route of care. One of the common concerns for those patients with ILD attending PR is that the educational program (originally devised for patients with chronic obstructive pulmonary disease (COPD)) may not be relevant to their specific needs. 3 Many patients continue to have a low level of knowledge, manifested by a lack of a clear understanding as to what ILD is, what it means, and how it is managed. Patient education is a crucial element of PR and should be provided to address specific needs through effective, wellevaluated, and thoughtful strategies. In this issue, Holland and colleagues suggest that, although patients with ILD value participation in PR programs, they have specific educational needs which may not be met by current educational content. 4 Moreover, they reason that despite some clinicians expressing significant reservations relating to the inclusion of information regarding prognosis and end-of-life care, these topics were highly valued by the patients. In this study, patients with ILD expressed a strong desire to receive information about disease trajectory during PR educational sessions. However, as well as the reservations expressed by the health professional participants for the need for privacy, it is also important to recognize that specific ILDs vary in their rates of progression. In addition, some patients may attend PR with the total lack of recognition that their ILD diagnosis, such as idiopathic pulmonary fibrosis (IPF) may be life limiting. Once the words ‘‘it is not lung cancer’’ are said, some patients, through relief, ‘‘hear’’ nothing else. This may be despite a health professional informing them that they have a different fatal lung disease. Hence, gaining a greater insight into patients’ understanding allows health professionals to adapt an educational forum that is acceptable to all patients. The educational intervention of PR for patients with ILD therefore needs to sensitively target barriers to patient/carer understanding, to recognize misconceptions, and to provide the truth in an experienced and meaningful manner. PR demonstrates an outwardly positive, rewarding experience for the patients who attend. The classes can, from my experience, offer a valuable source of support, education, and mutual kinship from other patients in the class. Effective educational strategies to improve the patient experience, begin with the assessment of needs, in particular the recognition of anxiety/depression, low self-esteem, a lack of understanding or motivation, and the identification of misconceptions.