Lindsay Apps

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. A brief self-management programme for COPD improves some patient outcomes; however, more support may be required http://ow.ly/AbCpm

We are not worthy--understanding why patients decline pulmonary rehabilitation following an acute exacerbation of COPD.

Abstract Purpose: To explore how patients who refuse referral to Pulmonary Rehabilitation (PR) appraise acute exacerbations of Chronic Obstructive Pulmonary Disease (COPD), in the context of having considered and declined PR. Method: Six participants recently hospitalized with an acute exacerbation COPD who refused a referral to PR subsequent to hospital discharge participated in in-depth interviews. Transcripts were subjected to Interpretative Phenomenological Analysis (IPA). Results: Three conceptual themes emerged comprising: “Construction of the self”, reflecting the impact of the acute exacerbation on personal identity; “Relinquishing control”, describing participants” struggle to maintain agency following an acute event; and “Engagement with others”, embodying participants’ sensitivity and responsiveness to interactions with others. Conclusions: Prominent in theses participants’ narratives are self-conscious cognitions which appear founded in shame and stigmatization. These cognitions seem to reflect challenges to self-worth and appear associated with reduced help-seeking and isolation. Perceived personal culpability for COPD appears to sensitize participants’ towards their interactions with health care professionals, construed as critical and judgmental which may increase avoidant behaviors, such as refusal of PR. When introducing PR, professionals should be aware of such sensitivities and facilitate open discussion which offers, time, compassion and understanding as a means of facilitating uptake. Implications for Rehabilitation Patients who decline referral to Pulmonary Rehabilitation report self-conscious cognitions (i.e. shame, guilt, fear of others evaluation) associated with lowered self-worth and reduced help-seeking. When introducing Pulmonary Rehabilitation health care professionals need to be mindful of patients’ sensitivities to being shamed which stem from perceived culpability for COPD. Professionals should facilitate an open discussion with patients which offers, time, compassion and understanding as a means of facilitating Pulmonary Rehabilitation uptake. Compassion focused interventions which encourage trust and safety may promote active partnership working and facilitate engagement in Pulmonary Rehabilitation.

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.

“Consumed by breathing” - A critical interpretive meta-synthesis of the qualitative literature

Objective To derive an improved understanding of how patients respond to, appraise, and understand the experience of an acute exacerbation of chronic obstructive pulmonary disease via a critical interpretive meta-synthesis. Methods Search terms – Exacerbate* OR hospital* AND ‘Chronic obstructive’ OR emphysema OR bronchitis AND interview* OR qualitative. Inclusion criteria – Primary research published in English of patients’ experiences of an acute exacerbation of chronic obstructive pulmonary disease. Data extraction and synthesis – eight papers were identified. Data were extracted by three researchers and constructs elicited via reciprocal translational analysis. Findings Themes reflected two domains of understanding an acute exacerbation: (1) Acute effect – encompassing intense emotions, somatic awareness and patients need for rescue. (2) Sustained regulation – reflecting life as interrupted, ongoing beliefs and behaviour and help-seeking. Discussion Acute exacerbations of chronic obstructive pulmonary disease result in heightened patient arousal, vigilance and powerlessness in response to symptoms. Ongoing, psychological interventions which promote partnership working by both acknowledging patients fear and shaping their appraisals may mitigate distress, enhancing the impact of health messages and engagement in pulmonary rehabilitation.

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.

Interactive web-based pulmonary rehabilitation programme: a randomised controlled feasibility trial

Objectives The aim of this study was to determine if an interactive web-based pulmonary rehabilitation (PR) programme is a feasible alternative to conventional PR. Design Randomised controlled feasibility trial. Setting Participants with a diagnosis of chronic obstructive pulmonary disease were recruited from PR assessments, primary care and community rehabilitation programmes. Patients randomised to conventional rehabilitation started the programme according to the standard care at their referred site on the next available date. Participants 103 patients were recruited to the study and randomised: 52 to conventional rehabilitation (mean (±SD) age 66 (±8) years, Medical Research Council (MRC) 3 (IQR2–4)); 51 to the web arm (mean (±SD) age 66 (±10) years, MRC 3 (IQR2–4)). Participants had to be willing to participate in either arm of the trial, have internet access and be web literate. Interventions Patients randomised to the web-based programme worked through the website, exercising and recording their progress as well as reading educational material. Conventional PR consisted of twice weekly, 2 hourly sessions (an hour for exercise training and an hour for education). Outcome measures Recruitment rates, eligibility, patient preference and dropout and completion rates for both programmes were collected. Standard outcomes for a PR assessment including measures of exercise capacity and quality of life questionnaires were also evaluated. Results A statistically significant improvement (p≤0.01) was observed within each group in the endurance shuttle walk test (WEB: mean change 189±211.1; PR classes: mean change 184.5±247.4 s) and Chronic Respiratory disease Questionnaire-Dyspnoea (CRQ-D; WEB: mean change 0.7±1.2; PR classes: mean change 0.8±1.0). However, there were no significant differences between the groups in any outcome. Dropout rates were higher in the web-based programme (57% vs 23%). Conclusions An interactive web-based PR programme is feasible and acceptable when compared with conventional PR. Future trials maybe around choice-based PR programmes for select patients enabling stratification of patient care. Trial registration number ISRCTN03142263; Results.

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 evaluation of an interactive web-based Pulmonary Rehabilitation programme: protocol for the WEB SPACE for COPD feasibility study.

Introduction Pulmonary Rehabilitation (PR) is an evidence-based intervention that has been recommended in guidelines to be available to those who may benefit. However, not all patients with chronic obstructive pulmonary disease (COPD) have access to this service. Healthcare services have shown the need for the provision of PR in other forms to enable patient choice and service capacity. There is an increase in evidence for the use of the internet in the management of long-term conditions to provide education and promote self-management. The aim of this study is to see if an interactive web-based PR programme is a feasible alternative compared with conventional PR. Methods and analysis This is a feasibility study designed to evaluate the efficacy of providing a web-based PR programme to improve patients exercise capacity, quality of life and promote self-management in patients with moderate to severe COPD compared with conventional PR programmes. Eligible patients will be randomly allocated to receive either the web-based programme or conventional rehabilitation programme for 7 weeks using an internet-based randomisation system. Participants will be recruited from PR assessments, primary care and community rehabilitation programmes. Those randomised to the web-based programme work through the website which contains all the information that the patients receive in the PR classes. They receive weekly phone calls by a professional to help progress through the course on line. The outcome measures will be recruitment rates and eligibility as well as that standard for a PR assessment including measures of exercise capacity, quality of life questionnaires and physical activity. Ethics and dissemination The research ethics committee for Northampton has provided ethical approval for the conduct of the study. The results of the study will be disseminated through appropriate conference presentations and peer reviewed journals. Trial registration number ISRCTN03142263.

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.

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.