Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia.

BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned. MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice. CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.

A Systematic Review of the Effectiveness of Interventions to Promote Referral; Adherence; and Uptake of Pulmonary Rehabilitation for Patients with Chronic Obstructive Pulmonary Disease.

Background: Pulmonary rehabilitation (PR) is an effective treatment for patients with chronic obstructive pulmonary disease (COPD). However, referral, uptake, and adherence remain low. Objective: To determine effectiveness of interventions to increase patient referral, uptake, and adherence to PR programs for patients with COPD. Methods: Randomized controlled trials (RCTs), non-randomized controlled trials, pre-post studies, and uncontrolled studies were sought from 7 databases and 3 clinical trial registries, to end August 2021. Full articles/conference abstracts were included if a coordinated set of activities was targeted to healthcare professionals (HCPs) caring for COPD patients, adults with COPD or their carers, to increase referral, uptake or adherence to any type of PR program. Two review authors independently screened titles, abstracts and full texts, extracted data and critically appraised studies using standard risk of bias tools. Results: From 11,272 records, 30 studies (23 full-text; 7 abstracts) met inclusion criteria: study interventions and designs were varied and generally low quality, targeting patients (n=13), HCPs (n=14) or both (n=3 studies). A CCT of patient held evidence score cards increased referral by 7.3% compared to 1.3% for usual care (p-0.03). A cluster RCT involving COPD nurse home visits with individualized care plans increased uptake to 31% compared to 10% in usual care (p=0.002). For people with anxiety or depression, one RCT of cognitive behavioral therapy alongside PR increased adherence (mean sessions 14.0 (sd 1.7) compared to 12.4 (sd 2.6)). Conclusion: Although a small number of studies, the weight of evidence suggested that interventions incorporating partnership working between patients and HCPs appeared to increase referral, uptake, and adherence with greater effectiveness than those targeting single populations. Increasing knowledge and empowering HCPs and patients may be important strategies. Concerns about study design and risk of bias suggest clear need for well-designed trials of interventions to report full pathway outcomes.

Screening tools for work-related asthma and their diagnostic accuracy: a systematic review protocol.

INTRODUCTION: Work-related asthma (WRA) refers to asthma caused by exposures at work (occupational asthma) and asthma made worse by work conditions (work-exacerbated asthma). WRA is common among working-age adults with asthma and impacts individual health, work-life and income but is often not detected by healthcare services. Earlier identification can lead to better health and employment outcomes. However, the optimal tool for screening and its effectiveness in practice is not well established. Screening tools may include whole questionnaires, questionnaire items, physiological measurements and/or immunological tests. Since the publication of the most contemporary WRA or occupational asthma-specific guidelines, further studies evaluating tools for identifying WRA have been performed. Our systematic review aims to summarise and compare the performance of screening tools for identifying WRA in both clinical and workplace settings. METHODS AND ANALYSIS: We will conduct a systematic review of observational and experimental studies (1975-2021) using MEDLINE, EMBASE, CINAHL Plus, Web of Science, CDSR, DARE, HTA, CISDOC databases and grey literature. Two independent reviewers will screen the studies using predetermined criteria, extract data according to a schedule and assess study quality using the Quality Assessment of Diagnostic Test Accuracy 2 tool. Screening tools and test accuracy measures will be summarised. Paired forest plots and summary receiver operating characteristic curves of sensitivities and specificities will be evaluated for heterogeneity between studies, using subgroup analyses, where possible. If the studies are sufficiently homogenous, we will use a bivariate random effect model for meta-analysis. A narrative summary and interpretation will be provided if meta-analysis is not appropriate. ETHICS AND DISSEMINATION: As this is a systematic review and does not involve primary data collection, formal ethical review is not required. We will disseminate our findings through open access peer-reviewed publication as well as through other academic and social media. PROSPERO REGISTRATION NUMBER: CRD42021246031.

Feasibility of a pulmonary rehabilitation programme for patients with symptomatic chronic obstructive pulmonary disease in Georgia: a single-site, randomised controlled trial from the Breathe Well Group.

OBJECTIVES: To assess the feasibility of delivering a culturally tailored pulmonary rehabilitation (PR) programme and conducting a definitive randomised controlled trial (RCT). DESIGN: A two-arm, randomised feasibility trial with a mixed-methods process evaluation. SETTING: Secondary care setting in Georgia, Europe. PARTICIPANTS: People with symptomatic spirometry-confirmed chronic obstructive pulmonary disease recruited from primary and secondary care. INTERVENTIONS: Participants were randomised in a 1:1 ratio to a control group or intervention comprising 16 twice-weekly group PR sessions tailored to the Georgian setting. PRIMARY AND SECONDARY OUTCOME MEASURES: Feasibility of the intervention and RCT were assessed according to: study recruitment, consent and follow-up, intervention fidelity, adherence and acceptability, using questionnaires and measurements at baseline, programme end and 6 months, and through qualitative interviews. RESULTS: The study recruited 60 participants (as planned): 54 (90%) were male, 10 (17%) had a forced expiratory volume in 1 second of ≤50% predicted. The mean MRC Dyspnoea Score was 3.3 (SD 0.5), and mean St George's Respiratory Questionnaire (SGRQ) 50.9 (SD 17.6). The rehabilitation specialists delivered the PR with fidelity. Thirteen (43.0%) participants attended at least 75% of the 16 planned sessions. Participants and rehabilitation specialists in the qualitative interviews reported that the programme was acceptable, but dropout rates were high in participants who lived outside Tbilisi and had to travel large distances. Outcome data were collected on 63.3% participants at 8 weeks and 88.0% participants at 6 months. Mean change in SGRQ total was -24.9 (95% CI -40.3 to -9.6) at programme end and -4.4 (95% CI -12.3 to 3.4) at 6 months follow-up for the intervention group and -0.5 (95% CI -8.1 to 7.0) and -8.1 (95% CI -16.5 to 0.3) for the usual care group at programme end and 6 months, respectively. CONCLUSIONS: It was feasible to deliver the tailored PR intervention. Approaches to improve uptake and adherence warrant further research. TRIAL REGISTRATION NUMBER: ISRCTN16184185.

Community lung health service design for COPD patients in China by the Breathe Well group.

COPD is increasingly common in China but is poorly understood by patients, medications are not used as prescribed and there is no access to recommended non-pharmacological treatment. We explored COPD patients' and general practitioners' (GPs) knowledge of COPD, views on its management and the acceptability of a flexible lung health service (LHS) offering health education, exercise, self-management, smoking cessation and mental health support. Using a convergent mixed methods design, data were collected from patients and GPs using focus groups (FGs) in four Chinese cities, questionnaires were also used to collect data from patients. FGs were audio-recorded and transcribed. Quantitative data were analysed descriptively, thematic framework analysis was used for the qualitative data. Two-hundred fifty-one patients completed the questionnaire; 39 patients and 30 GPs participated in ten separate FGs. Three overarching themes were identified: patients' lack of knowledge/understanding of COPD, current management of COPD not meeting patients' needs and LHS design, which was well received by patients and GPs. Participants wanted COPD education, TaiChi, psychological support and WeChat for social support. 39% of survey responders did not know what to do when their breathing worsened and 24% did not know how to use their inhalers. 36% of survey respondents requested guided relaxation. Overall, participants did not fully understand the implications of COPD and current treatment was sub-optimal. There was support for developing a culturally appropriate intervention meeting Chinese patients' needs, health beliefs, and local healthcare delivery. Further research should explore the feasibility of such a service.

Prioritising primary care respiratory research needs: results from the 2020 International Primary Care Respiratory Group (IPCRG) global e-Delphi exercise.

Respiratory diseases remain a significant cause of global morbidity and mortality and primary care plays a central role in their prevention, diagnosis and management. An e-Delphi process was employed to identify and prioritise the current respiratory research needs of primary care health professionals worldwide. One hundred and twelve community-based physicians, nurses and other healthcare professionals from 27 high-, middle- and low-income countries suggested 608 initial research questions, reduced after evidence review by 27 academic experts to 176 questions covering diagnosis, management, monitoring, self-management and prognosis of asthma, COPD and other respiratory conditions (including infections, lung cancer, tobacco control, sleep apnoea). Forty-nine questions reached 80% consensus for importance. Cross-cutting themes identified were: a need for more effective training of primary care clinicians; evidence and guidelines specifically relevant to primary care, adaption for local and low-resource settings; empowerment of patients to improve self-management; and the role of the multidisciplinary healthcare team.

Knowledge, attitudes and practices of patients and healthcare professionals regarding oral health and COPD in São Paulo, Brazil: a qualitative study.

Poor oral health is associated with worse clinical outcomes in Chronic Obstructive Pulmonary Disease (COPD). This qualitative study aimed to investigate the knowledge, attitudes and practices of COPD patients and primary health care professionals (HCPs) in Brazil - where there are high rates of COPD and periodontal disease. Semi-structured interviews with COPD patients (n = 9) and three semi-structured focus groups with HCPs (n = 25) were conducted in São Paulo. Interviews were thematically analysed using The Framework Method. Despite a high prevalence of edentulism, patients viewed tooth loss and decay as a norm and neglected preventative oral health practices. HCPs blamed patients for avoiding preventative opportunities, whilst patients discussed significant barriers to oral healthcare. Knowledge of the relationship between oral health and COPD was lacking among HCPs and patients, but all participants were receptive to oral health education. Practitioners identified the need for a COPD primary care pathway that integrates oral health protocols. This study indicates that Brazil must incorporate preventative oral health into COPD management and expand public dental services to increase uptake.

Specialist respiratory outreach: a case-finding initiative for identifying undiagnosed COPD in primary care.

COPD remains largely undiagnosed or is diagnosed late in the course of disease. We report findings of a specialist outreach programme to identify undiagnosed COPD in primary care. An electronic case-finding algorithm identified 1602 at-risk patients from 12 practices who were invited to attend the clinic. Three hundred and eighty-three (23.9%) responded and 288 were enrolled into the study. Forty-eight (16.6%) had undiagnosed mild and 28 (9.7%) had moderate airway obstruction, meeting spirometric diagnostic criteria for COPD. However, at 12 months only 8 suspected COPD patients (10.6%) had received a diagnostic label in their primary care record. This constituted 0.38% of the total patient population, as compared with 0.31% of control practices, p = 0.306. However, if all patients with airway obstruction received a coding of COPD, then the diagnosis rate in the intervention group would have risen by 0.84%. Despite the low take-up and diagnostic yield, this programme suggests that integrated case-finding strategies could improve COPD recognition.

Impact of COPD case finding on clinical care: a prospective analysis of the TargetCOPD trial.

OBJECTIVES: To investigate the impact of chronic obstructive pulmonary disease (COPD) case finding on clinical care. DESIGN: We conducted a prospective observational analysis of data from a pragmatic cluster randomised controlled trial in primary care in the West Midlands, UK (TargetCOPD). This compared alternative methods of COPD case finding against usual care. Data were extracted from electronic healthcare records and self-reported questionnaires for a subset of patients with newly diagnosed COPD. SETTING: 50 general practices that participated in the TargetCOPD trial. PARTICIPANTS: Patients aged 40-79 years newly identified with COPD by targeted case finding or by usual care, from 10 August 2012 to 22 June 2014. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was addition to a COPD register by the end of the trial. The secondary outcome was a clinical care score, derived from the sum of clinical assessments and relevant interventions. Associations between participant characteristics and the primary and secondary outcomes were assessed using multilevel regression. RESULTS: 857 patients identified with COPD by case finding and 764 by usual care were included. Only 21.2% of case-found patients had been added to a COPD register, compared with 92.7% of those diagnosed by usual care. The odds of being added were greater in smokers (adjusted OR 8.68, 95% CI 2.53 to 29.8), and in those with lower percentage of predicted forced expiratory volume in 1 s (adjusted OR 0.96 per percentage rise, 95% CI 0.95 to 0.98). Patients who had been added to a COPD register had a significantly higher clinical care score (mean difference 5.06, 95% CI 4.36 to 5.75). CONCLUSIONS: Only one in five case-found patients had been registered with COPD. Patients added to a COPD register received significantly higher levels of appropriate clinical care. TRIAL REGISTRATION NUMBER: ISRCTN14930255; Post-results.

Delay in seeking medical help in patients with rheumatoid arthritis in India: A qualitative study.

BACKGROUND: Rheumatoid arthritis (RA) is an autoimmune disease with varied articular and extra-articular manifestations. In developing countries such as India patients with RA often delay seeking medical advice which may impact prognosis and disease burden. AIM: To explore perceptions and experiences of patients living in India in seeking medical help for their RA symptoms. METHODS: Clinician-diagnosed RA participants from different socioeconomic backgrounds were interviewed using a semi-structured topic guide. Participants were purposively selected and interviewed following an iterative approach. All interviews were recorded and transcribed by an independent company and analyzed using a thematic framework. Findings were reported in accordance with consolidated criteria for reporting qualitative research guidelines. RESULTS: Twenty participants (13 male, 7 female) with median age 40 years (35.7-46.5) were recruited. Three overarching themes demonstrating participants' experiences and reasons for delay in seeking medical help were identified. (1) "Symptoms perspectives and delay in participants' journey" narrated participants' experiences of having RA symptoms, how these were perceived, rationalized and led to delay. (2) "Participants' experience of the healthcare system" illustrated delay in referral, reaching diagnosis and treatment initiation highlighting their experiences with the health system. (3) "Recommendations for improving care" where participants made recommendations for reducing the delay at local and national levels. CONCLUSION: This is the first qualitative study which explored perceptions and experiences of RA patients in India resulting in delay. Improved provision of rheumatology care, effective referral system and greater involvement of government at local and national levels are needed to improve the delay in seeking medical help for Indian patients.

Referral of patients with chronic obstructive pulmonary disease to pulmonary rehabilitation: a qualitative study of barriers and enablers for primary healthcare practitioners.

BACKGROUND: Pulmonary rehabilitation (PR) is a cost-effective, internationally recommended intervention for patients with chronic obstructive pulmonary disease (COPD). Referral is predominately led by primary healthcare practitioners (PHCPs), but referral and patient uptake is poor. AIM: To understand barriers and enablers for PHCPs when considering patient referral to PR, to explore the influence of patient characteristics, and to understand how referral rates may be increased. DESIGN AND SETTING: PHCPs who care for and refer patients with COPD to PR were purposively selected from general practices across Cambridgeshire and Peterborough, and the West Midlands. METHOD: A qualitative study. Semi-structured interviews were undertaken to theme saturation, exploring PR referral. Images depicting patients with varying COPD severity were used to stimulate memory and associative recall. Interviews were recorded, transcribed verbatim, and analysed using rapid qualitative analysis. RESULTS: A total of 19 PHCPs were interviewed. Barriers to PR referral included limited awareness of the clinical benefits, little knowledge of local PR providers, consultation time constraints, and presumed low patient motivation. While practice nurses had the greatest knowledge, they still described difficulty in promoting PR. PHCPs frequently described assessing patient suitability based on presumed accessibility, social, and disease-specific characteristics rather than the clinical benefits of PR. Referrals were facilitated by financial incentives for the practice and positive feedback from patients and providers. CONCLUSION: There were more barriers to PR referral than enablers. Providers must engage better with PHCPs, patients with COPD, and carers, and actively promote PR. Increasing PHCPs' awareness of the benefits of PR, financial incentives, and alternative referral pathways should be considered.

External Validation Of The Updated ADO Score In COPD Patients From The Birmingham COPD Cohort.

Background: Reviews suggest that the ADO score is the most discriminatory prognostic score for predicting mortality among chronic obstructive pulmonary disease (COPD) patients, but a full evaluation and external validation within primary care settings is critical before implementation. Objectives: To validate the ADO score in prevalent and screen-detected primary care COPD cases at 3 years and at shorter time periods. Patients and methods: One thousand eight hundred and ninety-two COPD cases were recruited between 2012 and 2014 from 71 United Kingdom general practices as part of the Birmingham COPD Cohort study. Cases were either on the practice COPD register or screen-detected. We validated the ADO score for predicting 3-year mortality with 1-year and 2-year mortality as secondary endpoints using discrimination (area-under-the-curve (AUC)) and calibration plots. Results: One hundred and fifty-four deaths occurred within 3 years. The ADO score was discriminatory for predicting 3-year mortality (AUC= 0.74; 95% CI: 0.69-0.79). Similar performance was found for 1- (AUC= 0.73; 0.66-0.80) and 2-year mortality (0.72; 0.67-0.76). The ADO score showed reasonable calibration for predicting 3-year mortality (calibration slope 0.95; 0.70-1.19) but over-predicted in cases with higher predicted risks of mortality at 1 (0.79; 0.45-1.13) and 2-year (0.79; 0.57-1.01) mortality. Discussion: The ADO score showed promising discrimination in predicting 3-year mortality in a primary care population including screen-detected cases. It may need to be recalibrated if it is used to provide risk predictions for 1- or 2-year mortality since, in these time-periods, over-prediction was evident, especially in cases with higher predicted mortality risks.

Model-based evaluation of the long-term cost-effectiveness of systematic case-finding for COPD in primary care.

INTRODUCTION: 'One-off' systematic case-finding for COPD using a respiratory screening questionnaire is more effective and cost-effective than routine care at identifying new cases. However, it is not known whether early diagnosis and treatment is beneficial in the longer term. We estimated the long-term cost-effectiveness of a regular case-finding programme in primary care. METHODS: A Markov decision analytic model was developed to compare the cost-effectiveness of a 3-yearly systematic case-finding programme targeted to ever smokers aged ≥50 years with the current routine diagnostic process in UK primary care. Patient-level data on case-finding pathways was obtained from a large randomised controlled trial. Information on the natural history of COPD and treatment effects was obtained from a linked COPD cohort, UK primary care database and published literature. The discounted lifetime cost per quality-adjusted life-year (QALY) gained was calculated from a health service perspective. RESULTS: The incremental cost-effectiveness ratio of systematic case-finding versus current care was £16 596 per additional QALY gained, with a 78% probability of cost-effectiveness at a £20 000 per QALY willingness-to-pay threshold. The base case result was robust to multiple one-way sensitivity analyses. The main drivers were response rate to the initial screening questionnaire and attendance rate for the confirmatory spirometry test. DISCUSSION: Regular systematic case-finding for COPD using a screening questionnaire in primary care is likely to be cost-effective in the long-term despite uncertainties in treatment effectiveness. Further knowledge of the natural history of case-found patients and the effectiveness of their management will improve confidence to implement such an approach.

Work productivity loss among rheumatoid arthritis patients in India: a qualitative study.

OBJECTIVE: The aim was to explore the extent to which RA impacts work productivity in patients living with RA in India. METHODS: Face-to-face semi-structured interviews took place with 13 male and seven female patients attending outpatient clinics at Sanjay Gandhi Postgraduate Institute of Medical Sciences, India, living with RA. Patients who were currently working were recruited. Data were audio recorded, transcribed by an independent translation company and analysed using the framework method of thematic analysis. RESULTS: Four themes that explained patients' experiences of coping with work whilst having RA were identified. These were as follows: balancing act of work and RA, in which participants expressed their day-to-day struggle of living with RA and coping at work; workplace adaptation after RA, in which participants shared insights into communicating with employers and their efforts to adapt at the workplace; support from others and information to manage RA and work, in which participants considered seeking support from different sources that would help them cope at work and understand RA; and wanting a better support mechanism, in which participants made recommendations that could help them to cope at work. CONCLUSION: This is the first study to explore the impact of RA on patients' work productivity in India. Patients might have different support needs compared with previous studies in other countries. Patients seem to be adopting additional coping strategies not addressed by current interventions or country systems, which might not be sufficient to support patients in remaining employed. Patients made future recommendations.

Clinical characteristics of patients newly diagnosed with COPD by the fixed ratio and lower limit of normal criteria: a cross-sectional analysis of the TargetCOPD trial.

Background: Consensus on the definition of airflow obstruction to diagnose COPD remains unresolved. Methods: We undertook systematic case finding for COPD in primary care using the fixed ratio (FR) criterion (forced expiratory volume in 1 s/forced vital capacity [FEV1/FVC] <0.7) for defining airflow obstruction and also using the lower limit of normal (LLN). We then compared the clinical characteristics of those identified by the 2 criteria. Results: A total of 3,721 individuals reporting respiratory symptoms were invited for spirometry. A total of 2,607 attended (mean age 60.4 years, 52.8% male, 29.8% current smokers) and 32.6% had airflow obstruction by FR ("FR+") and 20.2% by LLN ("LLN+"). Compared with the LLN+/FR+ group, the LLN-/FR+ group (12.4%) was significantly older, had higher FEV1 and FEV1/FVC, lower COPD assessment test scores, and less cough, sputum, and wheeze, but was significantly more likely to report a diagnosis of heart disease (14.2% versus 6.9%, p<0.001). Compared with the LLN+/FR+ group, the LLN-/FR- group was younger, had a higher body mass index, fewer pack-years, a lower prevalence of respiratory symptoms except for dyspnea, and lower FVC and higher FEV1. The probability of known heart disease was significantly lower in the LLN+/FR+ group compared with those with preserved lung function (LLN-/FR-) (adjusted odds ratio 0.62, 95% CI: 0.43-0.90) but this was not seen in the LLN-/FR+ group (adjusted odds ratio 0.90, 95% CI: 0.63-1.29). Conclusion: In symptomatic individuals, defining airflow obstruction by FR instead of LLN identifies a significant number of individuals who have less respiratory and more cardiac clinical characteristics.