Self-management programme of activity coping and education-SPACE for COPD(C)-in primary care: a pragmatic randomised trial.

INTRODUCTION: We have previously developed a supported self-management programme (SMP): Self-management Programme of Activity, Coping and Education for chronic obstructive pulmonary disease (COPD), which was successfully delivered on an individual basis. Payers expressed an interest in delivering the intervention in groups. AIM: To explore the feasibility, acceptability and clinical effectiveness of the intervention delivered and supported by healthcare professionals (HCPs) in groups within primary care. METHODS: A prospective, single-blinded randomised controlled trial was conducted, with follow-up at 6 and 9 months. Participants were randomly assigned to control (usual care) or intervention (a six-session, group-based SMP delivered over 5 months). The primary outcome was change in COPD Assessment Test (CAT) at 6 months.Semistructured focus groups were conducted with intervention participants to understand feasibility and acceptability. A focus group was conducted with HCPs who delivered the intervention to gain insight into any potential facilitators/barriers to implementing the intervention in practice. All qualitative data were analysed thematically. RESULTS: 193 participants were recruited, (median Medical Research Council (MRC) grade 2). There was no significant difference between the intervention and control group for the primary outcome (CAT). However, an improvement in self-reported patient activation (at 6 and 9 months), knowledge (at 6 months), mastery (at 6 and 9 months) and fatigue (at 6 months), in the intervention group compared with usual care was demonstrated.Qualitative results indicated that the intervention was acceptable to patients who took part in the intervention and HCPs valued the intervention, suggesting it might be best delivered early in the disease process. CONCLUSIONS: A supported self-management intervention is feasible and acceptable when delivered as a group-based intervention, by HCPs in the community.

What should pulmonary rehabilitation look like for people living with post-tuberculosis lung disease in the Bishkek and Chui region of the Kyrgyz Republic? A qualitative exploration.

OBJECTIVE: After experiencing tuberculosis (TB), many people develop post-tuberculosis lung disease (PTBLD). Pulmonary rehabilitation (PR) centrally comprising of education and exercise is recommended internationally for people living with chronic respiratory diseases. However, no such service exists in Kyrgyzstan. This study investigated the opinions of healthcare professionals who would be expected to be potential future referrers to PR and adults living with PTBLD about what a PR programme could look like in Kyrgyzstan. DESIGN: A qualitative study using interviews and focus groups. Grounded theory and thematic analysis were used for data collection and analysis. PARTICIPANTS: 63 participants; 15 referrers (12 male, 3 female; 12 pulmonolgists, 3 TB specialists) and 48 adults (26 male, 22 female) living with PTBLD. SETTING: Participants were recruited from hospital settings in Bishkek and Chuy Region, Kygryzstan. METHODS: Fifteen semistructured interviews were conducted with referrers and nine focus group discussions were conducted with adults living with PTBLD. RESULTS: Five key themes were developed: (1) living with PTBLD; (2) attitude to PR, which emphasised the perceived importance and potential benefits of implemention; (3) barriers/facilitators to PR, which included time and cost, and the importance of appropriate communication in enabling participation; (4) interventional components of PR, which described culturally and demographically appropriate physical activities including rhythmic movements, dance and volleyball; and (5) psychosocial support, which demonstrated the importance of psychological support for patients coping with the effects of stigma. CONCLUSIONS: Potential referrers and adults living with PTBLD expressed their support for the implementation of PR. The culture-specific and population-specific issues highlighted in this work demonstrate the need to address stigma and provide certain types of exercise training/education modules for this specific clinical population. In other respects the currently known attitudes/barriers to PR, identified in Western research, appear to apply. The principles of culturally adapting PR may be helpful for those looking to establish similar clinical services in other low-income and middle-income countries and in Central Asia in particular. TRIAL REGISTRATION NUMBER: ISRCTN11122503.

Integrating patients with chronic respiratory disease and heart failure into a combined breathlessness rehabilitation programme: a service redesign and pilot evaluation.

INTRODUCTION: The successful integration of patients with chronic heart failure (CHF) into a traditional pulmonary rehabilitation (PR) programme has previously been reported. Our aim was to reconfigure both our cardiac rehabilitation (CR) and PR services to enable us to deliver a symptom-based programme-breathlessness rehabilitation (BR), for patients with a primary symptom of breathlessness irrespective of the index diagnosis, or comorbid disease. METHODS: After a service redesign process, patients attended a two times per week, group-based, tailored exercise and education programme for 6 weeks, delivered by CR and PR staff. The classes included both aerobic and resistance exercises and an overarching generic education programme alongside disease-specific components. Home programmes were reviewed at each session to facilitate progress and influence changes in exercise behaviour beyond the supervised programme. Generic clinical outcome measures were performed pre and post BR.Staff focus groups were conducted to identify barriers and facilitators and explore staff perceptions. RESULTS: 272 patients (n=193 chronic respiratory disease (CRD) and n=79 CHF) were assessed and enrolled into BR (153 men, mean (SD) age 68.8 (12.7) years, body mass index 28.8 (7.3), Medical Research Council 3 (IQR 2-4), New York Heart Association 2 (IQR 2-3)). 164 patients completed the programme. Statistically significant improvements were seen in both exercise capacity (incremental shuttle walking test: mean change 47.4 m; endurance shuttle walking test: mean change 310.7 s) and quadriceps strength (quadriceps maximal voluntary contraction: mean change 3.7 kg) (p≤0.0001) alongside a statistically significant reduction in dyspnoea (chronic respiratory questionnaire/chronic heart questionnaire - self reported - dyspnoea: mean change 0.4) and anxiety and depression scores (Hospital Anxiety and Depression Scale (HADS) - anxiety: -1.6; HADS - depression: -1.3) (p≤0.0001).Qualitative staff focus groups identified three subthemes: collaboration and integration, service quality and future challenges. DISCUSSION: Overall the service redesign indicates the feasibility for staff and individuals with CRD and CHF to integrate into a breathlessness programme. Early data suggests clinical effectiveness. Given the significance of comorbid disease it is an approach that warrants further consideration.

A digital lifestyle behaviour change intervention for the prevention of type 2 diabetes: a qualitative study exploring intuitive engagement with real-time glucose and physical activity feedback.

BACKGROUND: Mobile health technologies have advanced to now allow monitoring of the acute physiological responses to lifestyle behaviours. Our aim was to explore how people engaged with real-time feedback on their physical activity and glucose levels over several weeks. METHODS: Semi-structured interviews with 26 participants (61.5% female, 56.6 years) at moderate-to-high risk of developing type 2 diabetes were conducted. Interviews were completed after participants took part in an intervention comprising a flash glucose monitor (Freestyle Libre) and a physical activity monitor (Fitbit Charge 2). Purposive sampling ensured representation of ages, genders and group allocations. RESULTS: Inductive thematic analysis revealed how individuals intuitively used, interpreted and acted on feedback from wearable technologies. Six key themes emerged: triggers of engagement with the technologies, links between behaviour and health, lack of confidence, changes to movement behaviours, changes to diet and barriers to lifestyle behaviour change. CONCLUSIONS: Our findings demonstrate that accessing behavioural and physiological feedback can increase self-awareness of how lifestyle impacts short-term health. Some participants noticed a link between the feedback presented by the two devices and changed their behaviour but many did not. Training and educational support, as well as efforts to optimize how feedback is presented to users, are needed to sustain engagement and behaviour change. Extensions of this work to involve people with diabetes are also warranted to explore whether behavioural and physiological feedback in parallel can encourage better diabetes self-management. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN17545949 , 12/05/2017, prospectively registered.

A Self-Management Programme of Activity Coping and Education - SPACE for COPD(C) - in primary care: The protocol for a pragmatic trial.

INTRODUCTION: National guidance for chronic obstructive pulmonary disease (COPD) suggests that self-management support be provided for patients. Our institution has developed a standardised, manual-based, supported self-management programme: Self-Management Programme of Activity Coping and Education (SPACE for COPD(C)). SPACE was previously piloted on a 1-2-1 basis, delivered by researchers, to individuals with COPD. Discussions with stakeholders highlighted considerable interest in delivering the SPACE for COPD(C) intervention as a group-based self-management programme facilitated by healthcare professionals (HCPs) in primary care settings. The study aims are to explore the feasibility, acceptability and efficacy for the intervention to be delivered and supported by HCPs and to examine whether group-based delivery of SPACE for COPD(C), with sustained support, improves patient outcomes following the SPACE for COPD(C) intervention. METHODS AND ANALYSIS: A prospective, multi-site, single-blinded randomised controlled trial (RCT) will be conducted, with follow-up at 6 and 9 months. Participants will be randomly assigned to either the control group (usual care) or intervention group (a six-session, group-based SPACE for COPD(C)self-management programme delivered over 5 months). The primary outcome is change in COPD assessment test at 6 months.A discussion session will be conducted with HCPs who deliver the intervention to discuss and gain insight into any potential facilitators/barriers to implementing the intervention in practice. Furthermore, we will conduct semi-structured focus groups with intervention participants to understand feasibility and acceptability. All qualitative data will be analysed thematically. ETHICS AND DISSEMINATION: The project has received a favourable opinion from South Hampshire B Research Ethics Committee, REC reference: 14/SC/1169 and full R&D approval from the University Hospitals of Leicester NHS Trust: 152408.Study results will be disseminated through appropriate peer-reviewed journals, national and international respiratory/physiotherapy conferences, via the Collaboration and Leadership in Applied Health Research and Care and through social media. TRIAL REGISTRATION: ISRCTN17942821; pre-results.

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.

The PRISMS taxonomy of self-management support: derivation of a novel taxonomy and initial testing of its utility.

BACKGROUND: Supporting self-management is a core response of health care systems globally to the increasing prevalence of long-term conditions. Lack of a comprehensive taxonomy (or classification) of self-management support components hinders characterization and, ultimately, understanding of these frequently complex, multi-component interventions. OBJECTIVE: To develop a comprehensive, descriptive taxonomy of self-management support components. METHODS: Components were derived from the 969 unique randomized controlled trials described in the 102 systematic reviews and 61 implementation trials, examining 14 diverse long-term conditions included in the Practical Reviews in Self-Management Support (PRISMS) project followed by discussion at an expert stakeholder workshop. The utility of the taxonomy was then tested using a self-management support intervention for cancer survivors. RESULTS: The PRISMS taxonomy comprises 14 components that might be used to support self-management (e.g. information about condition/management, provision of equipment, social support), when delivered to someone with a long-term condition or their carer. Overarching dimensions are delivery mode; personnel delivering the support; intervention targeting; and intensity, frequency and duration of the intervention. The taxonomy does not consider the effectiveness or otherwise of the different components or the overarching dimensions. CONCLUSIONS: The PRISMS taxonomy offers a framework to researchers describing self-management support interventions, to reviewers synthesizing evidence and to developers of health services for people with long-term conditions.

An evaluation of a self-management program for patients with long-term conditions.

OBJECTIVE: To evaluate a group-based self-management program (SMP) delivered as part of a quality improvement program, Co-Creating Health, for patients living with one of four long-term conditions (LTCs): chronic obstructive pulmonary disease, depression, diabetes, and musculoskeletal pain. METHODS: The 7 week SMP was co-delivered by lay and health professional tutors. Patients completed self-reported outcome measures at pre-course and 6 months follow-up. RESULTS: 486 patients completed (attended ≥5 sessions) the SMP and returned pre-course and 6 months follow up data. Patients reported significant improvements in patient activation (ES 0.65, p<0.001), with 53.9% of all patients reporting a meaningful ≥4 point improvement. Health-related quality of life (ES 0.06, p=0.04), and health status (ES 0.33, p<0.001) were also significantly improved. Patients' anxiety (ES 0.37, p<0.001) and depression (ES 0.31, p<0.001) significantly improved. Patients also reported significant improvements in their self-management skills (p values from p<0.001 to p=0.028). CONCLUSION: Attending the SMP led to improvements in a range of outcomes. Improvement in patient activation is important, as activated patients are more likely to perform self-care activities. PRACTICE IMPLICATIONS: Co-delivered SMPs provide meaningful improvements in activation for >50% of those who complete and are a useful addition to self-management support provision.

Self-reported effects of attending the Health Foundation's Co-Creating Health self-management programme for patients with type 2 diabetes mellitus in London, England.

INTRODUCTION: The purpose of this study was to determine the impact of the Health Foundation's Co-Creating Health (CCH) group self-management programme (SMP) for adult patients with type 2 diabetes on patient activation and quality of life. MATERIAL AND METHODS: We conducted a multisite longitudinal study of 283 patients (mean age 62.3 years, SD 11.1; 43% ethnic minority; 51% female). Primary outcomes were patient activation, and diabetes and health related quality of life. Secondary outcomes included health status, psychological distress, and self-management ability. Data were collected immediately before the first SMP session (baseline) and 6 months after completing the programme. Quantitative analyses were based on mixed models using intent-to-treat and per-protocol procedures. RESULTS: Sixty percent of patients who signed up for SMP completed the programme. Patient activation significantly improved 6 months after the SMP (p < 0.0001), and 60.2% of course completers showed meaningful improvement. Diabetes-related quality of life also improved significantly 6 months post course (p < 0.0001). About a quarter of SMP completers showed substantial improvement in self-management skills. CONCLUSIONS: Attending the UK SMP for adults with type 2 diabetes leads to improvements in patient activation, diabetes-related quality of life, and improved confidence and ability to self-manage their condition. Improvement in patient activation is an important finding because activated patients participate in collaborative decision-making with their clinicians, report improved health-related behaviours and clinical outcomes, and better adhere to treatment.

Development and qualitative evaluation of a self-management workshop for testicular cancer survivor-initiated follow-up.

PURPOSE/OBJECTIVES: To describe the needs of testicular cancer survivors, develop a nurse-led workshop, and explore the experience of participation. RESEARCH APPROACH: A systematic intervention development process was used to design a self-management workshop for cancer survivors, which then was evaluated qualitatively. SETTING: Outpatient clinic in England. PARTICIPANTS: 26 healthcare professionals, charity workers, family members, and testicular cancer survivors participated in the intervention development process. Six testicular cancer survivors attended the workshop and participated in the postintervention focus group discussion. METHODOLOGIC APPROACH: Ten participants, including four survivors, completed the initial needs assessment interviews. Twenty-six participants then rated the identified needs on two dimensions: importance to self-management and changeability via a self-management intervention. Literature review and expert consultation were used to identify potential workshop components. To explore the experience of attending the intervention, six testicular cancer survivors who participated in the nurse-led workshop were interviewed six weeks later. FINDINGS: The workshop was well received by participants, who appreciated the goal-setting and information provision activities. The men also felt that they had benefited from the experience of being in the group. CONCLUSIONS: Testicular cancer survivors had unmet post-treatment needs. The systematic intervention development method led to an evidence-based workshop to address those needs. Men reported benefits from attending the workshop, which may help maintain and improve health. INTERPRETATION: Nurse-led workshops can address the current unmet needs of testicular cancer survivors. KNOWLEDGE TRANSLATION: Testicular cancer survivors may require support with health information, maintaining psychological health, and monitoring cancer symptoms. Survivors also need help planning and maintaining an active lifestyle. In addition, a brief workshop approach to intervention delivery is acceptable to testicular cancer survivors.

Neurolinguistic programming: a systematic review of the effects on health outcomes.

BACKGROUND: Neurolinguistic programming (NLP) in health care has captured the interest of doctors, healthcare professionals, and managers. AIM: To evaluate the effects of NLP on health-related outcomes. DESIGN AND SETTING: Systematic review of experimental studies. METHOD: The following data sources were searched: MEDLINE, PsycINFO, ASSIA, AMED, CINAHL, Web of Knowledge, CENTRAL, NLP specialist databases, reference lists, review articles, and NLP professional associations, training providers, and research groups. RESULTS: Searches revealed 1459 titles from which 10 experimental studies were included. Five studies were randomised controlled trials (RCTs) and five were pre-post studies. Targeted health conditions were anxiety disorders, weight maintenance, morning sickness, substance misuse, and claustrophobia during MRI scanning. NLP interventions were mainly delivered across 4-20 sessions although three were single session. Eighteen outcomes were reported and the RCT sample sizes ranged from 22 to 106. Four RCTs reported no significant between group differences with the fifth finding in favour of the NLP arm (F = 8.114, P<0.001). Three RCTs and five pre-post studies reported within group improvements. Risk of bias across all studies was high or uncertain. CONCLUSION: There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather than robust evidence of no effect. There is currently insufficient evidence to support the allocation of NHS resources to NLP activities outside of research purposes.