Enabling Adults With Severe Asthma to Exercise: A Qualitative Examination of the Challenges for Patients and Health Care Professionals.

BACKGROUND: Adults living with severe asthma have lower physical activity levels, particularly high-intensity physical activity, compared with their healthy peers. Physical inactivity is associated with increased morbidity and mortality. OBJECTIVE: To understand patient and health care professional attitudes toward exercise and physical activity to inform future strategies for the improvement of healthy lifestyle behaviors, including exercise. METHODS: Participants recruited from a specialist difficult asthma service were interviewed individually, and health care professionals (HCPs) from primary care, secondary care, and a tertiary center were invited to attend focus groups. Interviews and focus groups were transcribed verbatim. We performed thematic analysis on interviews and focus groups separately, followed by an adapted framework analysis to analyze datasets together. RESULTS: Twenty-nine people with severe asthma participated in a semi-structured interview. A total of 51 HCPs took part in eight focus groups across the East Midlands, United Kingdom. Final analysis resulted in three major themes: barriers to exercise and exercise counseling - in which patients and HCPs identified disease and non-disease factors affecting those living with severe asthma; attitudes toward HCP support for exercise - highlighting education needs for HCPs and preference for supervised exercise programs; and areas for system improvement in supporting patients and HCPs - challenges exist across health sectors that limit patient support are described. CONCLUSIONS: Patients identified the important role of HCPs in supporting and advising on lifestyle change. Despite a preference for supervised exercise programs, both patient and HCP barriers existed. To meet patients' varied support needs, improved integration of services is required and HCP skills need extending.

Patient Perceptions of Living with Severe Asthma: Challenges to Effective Management.

BACKGROUND: The management of severe asthma poses many challenges related to treatment, adherence, and psychosocial morbidity. There is little direct data from the patient perspective to understand and negotiate the complexities of managing severe asthma. OBJECTIVE: To explore the patient perceptions of living with severe asthma and the experience of managing severe asthma, in order to better understand the support that might promote more effective self-management for severe asthma. METHODS: Participants were recruited from a specialist Difficult Asthma Service. Semistructured interviews were conducted by researchers independent of the patient's care. Interviews were transcribed verbatim and inductive thematic analysis was performed. RESULTS: Twenty-nine participants (13 male: mean [standard deviation] age, 49.5 [13.6] years: mean Asthma Control Questionnaire 2.2 [1.2]) participated in an interview. Analysis resulted in 4 major themes describing the experience and challenges to managing severe asthma: understanding of severe asthma, emotional impact of living with severe asthma (subtheme: fear of hospitalization), public perceptions of asthma, and concerns about medications. CONCLUSIONS: Health care professionals need to consider and discuss with patients their perceptions of severe asthma and the relevant treatments; particular attention should focus around education of disease control and actively exploring thoughts around hospitalization. Our data highlight the potential for psychological and social support to enhance self-management by directly addressing the wide-ranging individual challenges patients face. There is also a need for greater public awareness and education about severe asthma to minimize patient distress particularly in the work environment.

Understanding the measurement properties of the incremental shuttle walk test in patients with severe asthma.

BACKGROUND AND OBJECTIVE: We investigated the repeatability and validity of the incremental shuttle walk test (ISWT) distance compared to peak oxygen uptake (VO2pk ) during maximal incremental cycle ergometer (ICE) and treadmill (ITM) tests in adults with severe asthma. METHODS: Adults with severe asthma, Medical Research Council (MRC) dyspnoea ≥2, were recruited from specialists caring for patients with severe asthma. All participants performed three ISWT (familiarization and two subsequent tests on the same day), an ICE and an ITM in a randomized order, on separate days, to intolerance with expiratory gas analysis. RESULTS: A total of 50 patients (32 females, mean (SD), age: 54 (13) years, forced expiratory volume in 1 s (FEV1 ): 1.9 (0.8) L and body mass index (BMI): 32 (6) kg/m2 ) completed all five tests. The mean (SD) ISWT distance for each test was 400 (156), 418 (142) and 438 (157) m (P = 0.001), respectively. There was a strong correlation between the ISWT distance with VO2pk derived from ITM (r = 0.74, P < 0.001) and ICE (r = 0.75, P < 0.001). CONCLUSION: There was a small increase in the mean ISWT distance on sequential testing. In clinical practice, the coefficient of repeatability and heteroscedasticity need to be considered when assessing whether a true change has occurred within an individual patient. The ISWT has validity compared to VO2pk on both ICE and ITM, but they are not interchangeable.

Comparison of a structured home-based rehabilitation programme with conventional supervised pulmonary rehabilitation: a randomised non-inferiority trial.

BACKGROUND: Standardised home-based pulmonary rehabilitation (PR) programmes offer an alternative model to centre-based supervised PR for which uptake is currently poor. We determined if a structured home-based unsupervised PR programme was non-inferior to supervised centre-based PR for participants with COPD. METHODS: A total of 287 participants with COPD who were referred to PR (187 male, mean (SD) age 68 (8.86) years, FEV1% predicted 48.34 (17.92)) were recruited. They were randomised to either centre-based PR or a structured unsupervised home-based PR programme including a hospital visit with a healthcare professional trained in motivational interviewing, a self-management manual and two telephone calls. Fifty-eight (20%) withdrew from the centre-based group and 51 (18%) from the home group. The primary outcome was dyspnoea domain in the chronic respiratory disease questionnaire (Chronic Respiratory Questionnaire Self-Report; CRQ-SR) at 7 weeks. Measures were taken blinded. We undertook a modified intention-to-treat (mITT) complete case analysis, comparing groups according to original random allocation and with complete data at follow-up. The non-inferiority margin was 0.5 units. RESULTS: There was evidence of significant gains in CRQ-dyspnoea at 7 weeks in both home and centre-based groups. There was inconclusive evidence that home-based PR was non-inferior to PR in dyspnoea (mean group difference, mITT: -0.24, 95% CI -0.61 to 0.12, p=0.18), favouring the centre group at 7 weeks. CONCLUSIONS: The standardised home-based programme provides benefits in dyspnoea. Further evidence is needed to definitively determine if the health benefits of the standardised home-based programme are non-inferior or equivalent to supervised centre-based rehabilitation. TRIAL REGISTRATION NUMBER: ISRCTN81189044.

A qualitative study of patients' experiences of participating in SPACE for COPD: a Self-management Programme of Activity, Coping and Education.

The aim of this study was to understand experiences of participation in a supported self-management programme for chronic obstructive pulmonary disease (COPD). There is a wealth of clinical trials examining the outcomes of self-management interventions for individuals with COPD, but current understanding regarding patients' perspectives of such complex interventions is limited. Further insight may help to tailor self-management interventions and maximise patient engagement. Semi-structured interviews were conducted with individuals participating in a self-management programme, SPACE for COPD. Interviews took place at 6 weeks and 6 months following the programme. Data were analysed at each time point using inductive thematic analysis, and subsequently re-examined together. 40 interviews were undertaken and four themes emerged from the analysis: perceptions of the programme; lifestyle changes; social support; and disrupting factors and barriers to maintaining routines. SPACE for COPD was acceptable to participants in this study. The importance of education and social support was emphasised at both time points studied, but there were challenges such as comorbidities, ill health of family members and limited maintenance of exercise behaviours over the longer term. Further consideration of the role of carers and partners may help to improve adherence to self-management programmes once healthcare professional support has stopped.

Development of a training program to support health care professionals to deliver the SPACE for COPD self-management program.

BACKGROUND: With the growing burden of COPD and associated morbidity and mortality, a need for self-management has been identified. The Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD) manual was developed to support self-management in COPD patients. Currently, there is no literature available regarding health care professionals' training needs when supporting patients with COPD on self-management. AIM: This study sought to identify these needs to inform, design and develop a training program for health care professionals being trained to deliver a self-management program in COPD. METHODS: Fourteen health care professionals from both primary and secondary care COPD services participated in face-to-face semistructured interviews. Thematic analysis was used to produce a framework and identify training needs and views on delivery of the SPACE for COPD self-management program. Components of training were web-based knowledge training, with pre-and posttraining knowledge questionnaires, and a 1-day program to introduce the self-management manual. Feedback was given after training to guide the development of the training program. RESULTS: Health care professionals were able to identify areas where they required increased knowledge to support patients. This was overwhelming in aspects of COPD seen to be outside of their current clinical role. Skills in goal setting and behavioral change were not elicited as a training need, suggesting a lack of understanding of components of supporting self-management. An increase in knowledge of COPD was demonstrated following the training program. CONCLUSION: Both knowledge and skill gaps existed in those who would deliver self-management. Analysis of this has enabled a training program to be designed to address these gaps and enable health care professionals to support patients in self-management.

Protocol for a feasibility study to inform the development of a multicentre randomised controlled trial of asthma-tailored pulmonary rehabilitation versus usual care for individuals with severe asthma.

INTRODUCTION: Pulmonary rehabilitation with core components of exercise training and multiprofessional education is an integral part of the management of patients with chronic lung disease. International guidelines for individuals with asthma recommend exercise as exercise improves symptoms, indices of cardiopulmonary efficiency, health status and psychosocial outcome. However, there is little published evidence evaluating safety and acceptability of exercise training for individuals with severe asthma and there are concerns regarding exercise-induced asthma. We propose a feasibility study for a multicentre randomised controlled trial (RCT) of asthma-tailored pulmonary rehabilitation (asthma-tailored PR) versus usual care in individuals with severe asthma. METHODS AND ANALYSIS: The study will be conducted in three stages. Adults with severe asthma will be included if they have persistent symptoms despite being at step 4 or 5 of the British Thoracic Society guidelines. Stage 1: semistructured interviews will be used in a sample of 20-30 individuals with severe asthma to understand the experience and attitudes of this population towards exercise. Stage 2: eight focus groups of at least six healthcare professionals involved in the care of patients with severe asthma will be conducted to understand their attitudes towards exercise for this population. Stage 3: a small-scale RCT of the proposed multicentre RCT of asthma-tailored PR versus usual care for individuals with severe asthma will be conducted. The primary outcome measures will be recruitment, retention and adverse event rates. Semistructured interviews with participants of stage 3 will be used to identify further barriers or facilitators to participation in PR and the trial. Thematic analysis will be used for the interpretation of all interviews. ETHICS AND DISSEMINATION: The study results will inform the design of a larger multicentre RCT. The National Research Ethics Service Committee East Midland approved the study protocol. TRIAL REGISTRATION NUMBER: ISRCTN96143888.

Important, misunderstood, and challenging: a qualitative study of nurses' and allied health professionals' perceptions of implementing self-management for patients with COPD.

BACKGROUND: In light of the growing burden of COPD, there is increasing focus on the role of self-management for this population. Currently, self-management varies widely. Little is known either about nurses' and allied health professionals' (AHPs') understanding and provision of self-management in clinical practice. This study explores nurses' and AHPs' understanding and implementation of supported COPD self-management within routine clinical practice. MATERIALS AND METHODS: Nurses and AHPs participated in face-to-face semistructured interviews to explore their understanding and provision of COPD self-management, as well as their perceptions of the challenges to providing such care. Purposive sampling was used to select participants from a range of professions working within primary, community, and secondary care settings. Three researchers independently analyzed each transcript using a thematic approach. RESULTS: A total of 14 participants were interviewed. Nurses and AHPs viewed self-management as an important aspect of COPD care, but often misunderstood what it involved, leading to variation in practice. A number of challenges to supporting self-management were identified, which related to lack of time, lack of insight regarding training needs, and assumptions regarding patients' perceived self-management abilities. CONCLUSION: Nurses and AHPs delivering self-management require clear guidance, training in the use of effective self-management skills, and education that challenges their preconceptions regarding patients. The design of health care services also needs to consider the practical barriers to COPD self-management support for the implementation of such interventions to be successful.

A self-management programme for COPD: a randomised controlled trial.

Studies of programmes of self-management support for chronic obstructive pulmonary disease (COPD) have been inconclusive. The Self-Management Programme of Activity, Coping and Education (SPACE) FOR COPD is a 6-week self-management intervention for COPD, and this study aimed to evaluate the effectiveness of this intervention in primary care. A single-blind randomised controlled trial recruited people with COPD from primary care and randomised participants to receive usual care or SPACE FOR COPD. Outcome measures were performed at baseline, 6 weeks and 6 months. The primary outcome was symptom burden, measured by the self-reported Chronic Respiratory Questionnaire (CRQ-SR) dyspnoea domain. Secondary outcomes included other domains of the CRQ-SR, shuttle walking tests, disease knowledge, anxiety, depression, self-efficacy, smoking status and healthcare utilisation. 184 people with COPD were recruited and randomised. At 6 weeks, there were significant differences between groups in CRQ-SR dyspnoea, fatigue and emotion scores, exercise performance, anxiety, and disease knowledge. At 6 months, there was no between-group difference in change in CRQ-SR dyspnoea. Exercise performance, anxiety and smoking status were significantly different between groups at 6 months, in favour of the intervention. This brief self-management intervention did not improve dyspnoea over and above usual care at 6 months; however, there were gains in anxiety, exercise performance, and disease knowledge.

How do informal self-care strategies evolve among patients with chronic obstructive pulmonary disease managed in primary care? A qualitative study.

BACKGROUND: There is much description in the literature of how patients with chronic obstructive pulmonary disease (COPD) manage their breathlessness and engage in self-care activities; however, little of this is from the perspective of those with less severe disease, who are primarily managed in primary care. This study aimed to understand the self-care experiences of patients with COPD who are primarily managed in primary care, and to examine the challenges of engaging in such behaviors. METHODS: Semistructured interviews were carried out with 15 patients with COPD as part of a larger project evaluating a self-management intervention. Thematic analysis was supported by NVivo software (version 8, QSR International, Melbourne, Australia). RESULTS: Three main themes are described, ie, experiencing and understanding symptoms of COPD, current self-care activities, and the importance of family perceptions in managing COPD. CONCLUSION: Self-care activities evolved spontaneously as participants experienced symptoms of COPD. However, there was a lack of awareness about whether these strategies would impact upon symptoms. Perceptions of COPD by family members posed a challenge to self-care for some participants. Health care professionals should elicit patients' prior disease experiences and utilize spontaneous attempts at disease management in future self-management. These findings have implications for promoting self-management and enhancing quality of life.

The development and pilot testing of the self-management programme of activity, coping and education for chronic obstructive pulmonary disease (SPACE for COPD).

PURPOSE: There is no independent standardized self-management approach available for chronic obstructive pulmonary disease (COPD). The aim of this project was to develop and test a novel self-management manual for individuals with COPD. PATIENTS: Participants with a confirmed diagnosis of COPD were recruited from primary care. METHODS: A novel self-management manual was developed with health care professionals and patients. Five focus groups were conducted with individuals with COPD (N = 24) during development to confirm and enhance the content of the prototype manual. The Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD) manual was developed as the focus of a comprehensive self-management approach facilitated by health care professionals. Preference for delivery was initial face-to-face consultation with telephone follow-up. The SPACE for COPD manual was piloted with 37 participants in primary care. Outcome measures included the Self-Report Chronic Respiratory Questionnaire, Incremental Shuttle Walk Test, and Endurance Shuttle Walking Test (ESWT); measurements were taken at baseline and 6 weeks. RESULTS: The pilot study observed statistically significant improvements for the dyspnea domain of the Self-Report Chronic Respiratory Questionnaire and ESWT. Dyspnea showed a mean change of 0.67 (95% confidence interval 0.23-1.11, P = 0.005). ESWT score increased by 302.25 seconds (95% confidence interval 161.47-443.03, P < 0.001). CONCLUSION: This article describes the development and delivery of a novel self-management approach for COPD. The program, incorporating the SPACE for COPD manual, appears to provoke important changes in exercise capacity and breathlessness for individuals with COPD managed in primary care.