F-34 Pulmonary rehabilitation

Respiratory medicine services developed rehabilitation for their patients independently from other rehabilitation services. In 2013, the American Thoracic Society and European Respiratory Society published a definition of pulmonary rehabilitation: “Pulmonary rehabilitation is a comprehensive intervention based on a thorough patient assessment followed by patient-tailored therapies, which include, but are not limited to, exercise training, education, and behavior change, designed to improve the physical and psychological condition of people with chronic respiratory disease and to promote the long-term adherence of health-enhancing behaviors.” This is like other independently developed definitions, demonstrating that rehabilitation’s conceptual basis is substantial. The statement is comprehensive, providing evidence and recommendations for all aspects of pulmonary rehabilitation. It is now 11 years old, but the principles will not have changed much. The most significant development may be the increasing need for specialist rehabilitation services to meet the needs of patients who have other non-respiratory conditions needing rehabilitation, including frailty in older adults. This page will consider a few aspects but cannot replace reading the statement.

Pulmonary rehabilitation competency.

The competent rehabilitation expert is “Able to assess a patient with a respiratory disorder and to advise on both the respiratory and general programme of rehabilitation required.“ A downloadable document gives further details on the expected behaviours, knowledge and skills needed and some references to other valuable materials.

Introduction

Breathing is central to human life, not simply to remain alive; we control breathing to talk and communicate, a defining characteristic. In her book Illness, Havi Carel, a philosopher with lymphangioleiomyomatosis, vividly describes how it feels to have limited breath and how it feels to be ill.

Rebecca Disler and colleagues reviewed 22 qualitative studies and identified three main themes from the patients’ experiences: they wanted a better understanding of their condition, more help for the ongoing and sustained symptom burden, and support to cope with the psychological impact of the condition. Diana Ferreira and colleagues interviewed 26 patients and their carers, and the main patient concerns were with their “shrinking world”, the emotional consequences of chronic breathlessness, and maintaining meaning in their life when facing death.

A third review of published qualitative studies by Ann Hutchinson, entitled “Living with Breathlessness”, added another crucial theme: the response of clinical staff. Two areas of concern arose: testimonial injustice and hermeneutical injustice. In plain English, the former refers to clinicians not considering the patient’s reported symptoms, for example, not believing them or not responding to the patient when disclosing a problem. The latter refers to the clinician not appreciating or understanding the effects of the breathlessness. Such as asking someone breathless at rest what their paid employment is and seeming surprised when the patient is not working.

As with many disabling conditions, clinical staff and, most likely, friends and colleagues’ apparent failure to appreciate the effects of a condition probably arises from the lack of any noticeable, visible loss. It is a ‘hidden disability’ that affects every aspect of life.

Effectiveness and measures.

The American Thoracic Society and European Respiratory Society’s 2013 statement on pulmonary rehabilitation provided much evidence on the effectiveness of general and specific interventions.

A Cochrane systematic review on Pulmonary rehabilitation for chronic obstructive pulmonary disease identified 65 trials involving 3822 patients. It found moderately large, clinically significant benefits for breathlessness, fatigue, emotional well-being, a sense of control, exercise capacity, and quality of life. The interventions encompassed exercise and sometimes education or psychological support (or both).

Another Cochrane systematic review investigated Pulmonary rehabilitation for interstitial lung disease, finding 21 studies. Sixteen (675 patients) were included in a meta-analysis. The quality of the studies limited the certainty, but nonetheless, pulmonary rehabilitation probably improves exercise capacity (walking distance), shortness of breath, and quality of life.

Anne Holland and colleagues investigated what treatable aspects of respiratory conditions were targeted by pulmonary rehabilitation. Their systematic review encompassed 116 studies (6893 patients). The rehabilitation aimed at:

Deconditioning in 97%
Extra-pulmonary traits
- Obesity (18%) or cachexia (18%)
- Anxiety (10%) and depression (10%)
- Non-adherence (46%)
- Poor inhalation techniques (24%)
- Limited family or social support (19%)

Thierry Troosters and colleagues have reviewed in more detail a variety of specific exercise interventions and discussed how treatment can be tailored to fit a patient’s situation.

One vital limitation of all effectiveness studies is the measures used. If an outcome is not measured, or if a measure used is insensitive or unreliable (test-retest repeatability is low), a benefit may not be detected. Furthermore, metanalysis is constrained if studies investigate different outcomes, such as exercise capacity or breathlessness, or if various other measures of the same construct are used.

Sara Souto-Miranda and colleagues reviewed 267 studies (43,153 patients) and found that studies measured outcomes in 22 domains, with 163 separate outcomes measured using 217 specific measures. Further analysis identified three separate conceptual outcomes that were usually measured: exercise capacity (e.g. six-minute walking distance), health-related quality of life (e.g. St George’s respiratory questionnaire), and symptoms (e.g. Medical Research Council dyspnoea scale).

Multimorbidity and pulmonary rehabilitation.

The National Institute for Health and Clinical Care Excellence (NICE) has recognised that multimorbidity is common and reduces the applicability of all single-disease guidelines. In 2016, they issued guidance on “Multimorbidity: clinical assessment and management”. It highlights the requirement for services to be person-centred, with shared decision-making reflecting patient priorities to reduce treatment burden and unplanned episodes of care. Unfortunately, rehabilitation is not mentioned once.

Many patients with long-term respiratory disorders have significant other conditions. Jonás Carmona-Pírez and colleagues analysed data from 127,530 people in a Spanish population sample with chronic obstructive airway diseases. Three-quarters had at least one co-existing chronic condition, and most had more because the average was 3.7. The common types of comorbid conditions were cardiometabolic disease, mental health disorders, dermatological disorders, cardiovascular disease, and musculoskeletal disorders. The notable exception is neurological disorders.

Another study on the same population has revealed some clusters of comorbidities; this study identified 14 patterns. However, the primary issue is that multimorbidity is common and occurs in all single-disease rehabilitation services.

Rod Taylor and Sally Singh discussed the issue of multimorbidity in an article, “Personalised rehabilitation for cardiac and pulmonary patients with multimorbidity: Time for implementation?” The title tells you their answer. They argue that “we need to adapt to the change in population demographics and look to provide a model of personalised multimorbidity rehabilitation that meets the needs of patients, irrespective of their cardiovascular or pulmonary index diagnosis.” However, though they agree that single-disease focus is inappropriate, they only consider the co-morbidities associated with the index condition, notably other cardiovascular disorders and conditions causing cardio-pulmonary disability. They do not extend their interest to independent conditions such as osteoarthritis.

Anne Holland and colleagues have also discussed the issue in an article entitled, “Multimorbidity, frailty and chronic obstructive pulmonary disease: Are the challenges for pulmonary rehabilitation in the name?” However, their response is also limited. They argue that pulmonary rehabilitation might be beneficial for people with frailty. While this may be true, it overlooks other rehabilitation interventions that could benefit this patient group.

In summary, people who have cardiac or pulmonary conditions undoubtedly often have other conditions affecting their disability and rehabilitation. Many of these conditions will be associated with the index disorder, but many will be independent. Individual patients need a full assessment of all their rehabilitation needs and require a program tailored to their needs (or ‘patient curriculum’, as one patient’s father said).

Conclusion

Pulmonary and cardiac rehabilitation’s focus on exercise will usually benefit any patient, regardless of their condition, which highlights the importance of expertise and competence in these two types of rehabilitation. However, anyone mainly working in pulmonary rehabilitation will need much broader knowledge and competency across the field of rehabilitation because many of their potential patients will have one or more other conditions. These conditions may influence pulmonary rehabilitation, for example, limiting some aspects. The patient will, therefore, have additional specific rehabilitation needs arising from other conditions. While occasionally, these needs will require unusual expertise, many should be within the capability of the team responsible for the patient.