Editorial
Meaningful patient education: How can pulmonary rehabilitation help to bridge the gap for those with interstitial lung disease?
Chronic Respiratory Disease 2015, Vol. 12(2) 83–84 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1479972315579363 crd.sagepub.com
Emma E Vincent
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.
Department of Pulmonary Rehabilitation, Centre for Exercise and Rehabilitation Science, Glenfield Hospital, University Hospitals of Leicester, Leicester, UK Corresponding author: Emma E Vincent, Department of Pulmonary Rehabilitation, Centre for Exercise and Rehabilitation Science, Glenfield Hospital, University Hospitals of Leicester, Leicester LE3 9QP, UK. Email: [email protected]
Downloaded from crd.sagepub.com at NEW YORK UNIV LIBRARY on May 23, 2015
84
Chronic Respiratory Disease 12(2)
In the study by Holland et al.,4 the authors report the strongest theme identified by the patient participants to be the desire for PR clinicians to be honest about their future, regardless of the underlying diagnosis of ILD. Truth telling is a complex task that requires multiple communication skills from health professionals. ILD care demands the communication of all types of news, from the specific diagnosis to the adverse effects of treatment regimes, to the suggestion of a life-limiting disease. The importance of developing communication skills for PR health professionals should therefore be considered to provide this sensitive information. The authors also advocate the role of social support and mutual kinship within the PR classes. Health professionals can enhance this patient experience by establishing patient understanding/need, creating opportunities to explore concerns (e.g. when walking alongside them in class), and ensuring the needs of the carers are assessed and addressed. The authors found no consensus on the discussion of end-of-life care in PR. While some clinicians felt that PR was a good location, and that the group was advantageous, others
felt strongly that this conversation should only happen in private. In summary, PR is widely recognized as an important, effective intervention for patients with COPD. Now that the guidelines are suggesting PR for those patients with ILD, health professionals need to gain a greater understanding of the educational needs of this population. The development of comprehensive PR curricula for ILD will require further research, alongside the implementation of thoughtful strategies. References 1. Holland A and Hill C. Pulmonary rehabilitation for interstitial lung disease. Cochrane Datebase Syst Rev 2014; 10: CD006322. 2. NICE. IPF quality standards, 2015. Available at: http:// publications.nice.org.uk/ifp79 (accessed January 2015) 3. Jenkins S, Hill K, and Cecins NM. State of the art: how to set up a pulmonary rehabilitation program. Respirology 2010; 15: 1157–1173. 4. Holland A, Fiore J, Goh N, et al. Be honest and help me prepare for the future: what people with interstitial lung disease want from education in pulmonary rehabilitation. Chron Respir Dis 2015; 12: 93–101.
Downloaded from crd.sagepub.com at NEW YORK UNIV LIBRARY on May 23, 2015
Meaningful patient education: How can pulmonary rehabilitation help to bridge the gap for those with interstitial lung disease?
Chronic Respiratory Disease 2015, Vol. 12(2) 83–84 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1479972315579363 crd.sagepub.com
Emma E Vincent
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.
Department of Pulmonary Rehabilitation, Centre for Exercise and Rehabilitation Science, Glenfield Hospital, University Hospitals of Leicester, Leicester, UK Corresponding author: Emma E Vincent, Department of Pulmonary Rehabilitation, Centre for Exercise and Rehabilitation Science, Glenfield Hospital, University Hospitals of Leicester, Leicester LE3 9QP, UK. Email: [email protected]
Downloaded from crd.sagepub.com at NEW YORK UNIV LIBRARY on May 23, 2015
84
Chronic Respiratory Disease 12(2)
In the study by Holland et al.,4 the authors report the strongest theme identified by the patient participants to be the desire for PR clinicians to be honest about their future, regardless of the underlying diagnosis of ILD. Truth telling is a complex task that requires multiple communication skills from health professionals. ILD care demands the communication of all types of news, from the specific diagnosis to the adverse effects of treatment regimes, to the suggestion of a life-limiting disease. The importance of developing communication skills for PR health professionals should therefore be considered to provide this sensitive information. The authors also advocate the role of social support and mutual kinship within the PR classes. Health professionals can enhance this patient experience by establishing patient understanding/need, creating opportunities to explore concerns (e.g. when walking alongside them in class), and ensuring the needs of the carers are assessed and addressed. The authors found no consensus on the discussion of end-of-life care in PR. While some clinicians felt that PR was a good location, and that the group was advantageous, others
felt strongly that this conversation should only happen in private. In summary, PR is widely recognized as an important, effective intervention for patients with COPD. Now that the guidelines are suggesting PR for those patients with ILD, health professionals need to gain a greater understanding of the educational needs of this population. The development of comprehensive PR curricula for ILD will require further research, alongside the implementation of thoughtful strategies. References 1. Holland A and Hill C. Pulmonary rehabilitation for interstitial lung disease. Cochrane Datebase Syst Rev 2014; 10: CD006322. 2. NICE. IPF quality standards, 2015. Available at: http:// publications.nice.org.uk/ifp79 (accessed January 2015) 3. Jenkins S, Hill K, and Cecins NM. State of the art: how to set up a pulmonary rehabilitation program. Respirology 2010; 15: 1157–1173. 4. Holland A, Fiore J, Goh N, et al. Be honest and help me prepare for the future: what people with interstitial lung disease want from education in pulmonary rehabilitation. Chron Respir Dis 2015; 12: 93–101.
Downloaded from crd.sagepub.com at NEW YORK UNIV LIBRARY on May 23, 2015
