Implementation of a palliative care intervention for patients with COPD - a mixed methods process evaluation of the COMPASSION study.

OBJECTIVES: Little direction exists on how to effectively implement palliative care for patients with COPD. In the COMPASSION study, we developed, executed, and evaluated a multifaceted implementation strategy to improve the uptake of region-tailored palliative care intervention components into routine COPD care. We evaluated the implementation strategy and assessed the implementation process, barriers, and facilitators. METHODS: A mixed methods process evaluation was performed. Primary and secondary healthcare providers in four hospital regions in the Netherlands were trained. Patients identified during hospitalisation for an acute exacerbation received palliative care and were followed for a year. Various sources were used: process data, questionnaires including the End-of-life Professional Caregiver Survey (EPCS), medical records, monitoring meetings, and interviews. The Consolidated Framework of Implementation Research (CFIR) was used to categorize implementation determinants. RESULTS: The training sessions with roleplay were positively evaluated and increased professionals' self-efficacy in providing palliative care statistically significantly. Of 98 patients identified, 44 (44.9%) received one or more palliative care conversations at the outpatient clinic. Having those conversations was highly valued by healthcare providers because it led to clarity and peace of mind for the patient and higher job satisfaction. Coordination and continuity remained suboptimal. Most important barriers to implementation were time constraints, the COVID-19 pandemic, and barriers related to transmural and interdisciplinary collaboration. Facilitators were the systematic screening of patients for palliative care needs, adapting to the patient's readiness, conducting palliative care conversations with a pulmonologist and a COPD nurse together, and meeting regularly with a small team led by a dedicated implementation leader. CONCLUSIONS: Providing integrated palliative care for patients with COPD is highly valued by healthcare providers but remains challenging. Our findings will guide future implementation efforts. Future research should focus on how to optimize transmural and interdisciplinary collaboration. Trial registration The COMPASSION study is registered in the Netherlands Trial Register (NTR): NL7644. Registration date: 07/04/2019.

External Validation and User Experiences of the ProPal-COPD Tool to Identify the Palliative Phase in COPD.

Background: Difficulty predicting prognosis is a major barrier to timely palliative care provision for patients with COPD. The ProPal-COPD tool, combining six clinical indicators and the Surprise Question (SQ), aims to predict 1-year mortality as a proxy for palliative care needs. It appeared to be a promising tool for healthcare providers to identify patients with COPD who could benefit from palliative care. Objective: To externally validate the ProPal-COPD tool and to assess user experiences. Methods: Patients admitted with an acute exacerbation COPD were recruited across 10 hospitals. Demographics, clinical characteristics and survival status were collected. Sensitivity, specificity, positive and negative predictive values of the tool using two cut-off values were calculated. Also, predictive properties of the SQ were calculated. In monitoring meetings and interviews, healthcare providers shared their experiences with the tool. Transcripts were deductively coded using six user experience domains: Acceptability, Satisfaction, Credibility, Usability, User-reported adherence and Perceived impact. Results: A total of 523 patients with COPD were included between May 2019 and August 2020, of whom 100 (19.1%) died within 12 months. The ProPal-COPD tool had an AUC of 0.68 and a low sensitivity (55%) and moderate specificity (74%) for predicting 1-year all-cause mortality. Using a lower cut-off value, sensitivity was higher (74%), but specificity lower (46%). Sensitivity and specificity of the SQ were 56% and 73%, respectively (AUC 0.65). However, healthcare providers generally appreciated using the tool because it increased awareness of the palliative phase and provided a shared understanding of prognosis, although they considered its outcome not always correct. Conclusion: The accuracy of the ProPal-COPD tool to predict 1-year mortality is limited, although screening patients with its indicators increases healthcare providers' awareness of palliative care needs and encourages them to timely initiate appropriate care.

Beliefs, Perceptions, and Behaviors Regarding Chronic Respiratory Diseases of Roma in Crete, Greece: A Qualitative FRESH AIR Study.

Background: The global burden of chronic respiratory diseases (CRDs) disproportionally affects Roma populations. Health interventions addressing CRD among Roma or other vulnerable groups often fail to be effective, as their implementation strategy misaligns with the local context. To design context-driven strategies, we studied CRD-related beliefs, perceptions, and behaviors among a Greek Roma population, focussing on asthma and COPD. Methods: For this qualitative study in Crete, Greece, we used a Rapid Assessment Process. We conducted interviews and focus groups with purposively selected Roma community members (CMs), key informants (KIs) and healthcare professionals (HPs) serving the population. Data were triangulated using observations of households and clinical consultations. Key themes were identified using Thematic Content Analysis. The Health Belief Model, the Explanatory Model of Illness, and the Theory of Planned Behavior that are complementary is some aspects, guided our methodology with the several variables from them to be integrated to better understand CRD risk preventative behavior. Results: We conducted six focus groups, seven interviews and 13 observations among 15 CMs, four KIs, and three HPs. Five themes emerged: (1) Poor CRD-awareness (smoking and household air pollution were perceived as harmful, but almost exclusively associated with acute rather than chronic symptoms); (2) Low perceived susceptibility to CRD (and CMs tended to ignore respiratory symptoms); (3) High risk exposure (smoking was common, and air pollution was perceived inevitable due to financial constraints); (4) Healthcare seeking (healthcare was sought only for persistent, severe symptoms, daily needs were a priority); (5) Perceived barriers/facilitators to care (health illiteracy, perceived discrimination and financial constraints were main barriers; established trust the main facilitator). Conclusion: These five themes highlight that strategies to tackle CRD in the studied Roma setting require a multilevel approach: bridging awareness gaps at the population level, providing resources to enhance the adoption of healthy behaviors, and fighting discrimination at the societal level, whilst establishing trusted relationships at the local level. Similar methodologies to address local context may strengthen the implementation of effective interventions for similarly vulnerable and/or low-resource populations.

Digital Education for Health Professionals: An Evidence Map, Conceptual Framework, and Research Agenda.

BACKGROUND: Health professions education has undergone major changes with the advent and adoption of digital technologies worldwide. OBJECTIVE: This study aims to map the existing evidence and identify gaps and research priorities to enable robust and relevant research in digital health professions education. METHODS: We searched for systematic reviews on the digital education of practicing and student health care professionals. We searched MEDLINE, Embase, Cochrane Library, Educational Research Information Center, CINAHL, and gray literature sources from January 2014 to July 2020. A total of 2 authors independently screened the studies, extracted the data, and synthesized the findings. We outlined the key characteristics of the included reviews, the quality of the evidence they synthesized, and recommendations for future research. We mapped the empirical findings and research recommendations against the newly developed conceptual framework. RESULTS: We identified 77 eligible systematic reviews. All of them included experimental studies and evaluated the effectiveness of digital education interventions in different health care disciplines or different digital education modalities. Most reviews included studies on various digital education modalities (22/77, 29%), virtual reality (19/77, 25%), and online education (10/77, 13%). Most reviews focused on health professions education in general (36/77, 47%), surgery (13/77, 17%), and nursing (11/77, 14%). The reviews mainly assessed participants' skills (51/77, 66%) and knowledge (49/77, 64%) and included data from high-income countries (53/77, 69%). Our novel conceptual framework of digital health professions education comprises 6 key domains (context, infrastructure, education, learners, research, and quality improvement) and 16 subdomains. Finally, we identified 61 unique questions for future research in these reviews; these mapped to framework domains of education (29/61, 47% recommendations), context (17/61, 28% recommendations), infrastructure (9/61, 15% recommendations), learners (3/61, 5% recommendations), and research (3/61, 5% recommendations). CONCLUSIONS: We identified a large number of research questions regarding digital education, which collectively reflect a diverse and comprehensive research agenda. Our conceptual framework will help educators and researchers plan, develop, and study digital education. More evidence from low- and middle-income countries is needed.

Mapping low-resource contexts to prepare for lung health interventions in four countries (FRESH AIR): a mixed-method study.

BACKGROUND: Effectiveness of health programmes can be undermined when the implementation misaligns with local beliefs and behaviours. To design context-driven implementation strategies, we explored beliefs and behaviours regarding chronic respiratory disease (CRD) in diverse low-resource settings. METHODS: This observational mixed-method study was conducted in Africa (Uganda), Asia (Kyrgyzstan and Vietnam) and Europe (rural Greece and a Roma camp). We systematically mapped beliefs and behaviours using the SETTING-tool. Multiple qualitative methods among purposively selected community members, health-care professionals, and key informants were triangulated with a quantitative survey among a representative group of community members and health-care professionals. We used thematic analysis and descriptive statistics. FINDINGS: We included qualitative data from 340 informants (77 interviews, 45 focus group discussions, 83 observations of community members' households and health-care professionals' consultations) and quantitative data from 1037 community members and 204 health-care professionals. We identified three key themes across the settings; namely, (1) perceived CRD identity (community members in all settings except the rural Greek strongly attributed long-lasting respiratory symptoms to infection, predominantly tuberculosis); (2) beliefs about causes (682 [65·8%] of 1037 community members strongly agreed that tobacco smoking causes symptoms, this number was 198 [19·1%] for household air pollution; typical perceived causes ranged from witchcraft [Uganda] to a hot-cold disbalance [Vietnam]); and (3) norms and social structures (eg, real men smoke [Kyrgyzstan and Vietnam]). INTERPRETATION: When designing context-driven implementation strategies for CRD-related interventions across these global settings, three consistent themes should be addressed, each with common and context-specific beliefs and behaviours. Context-driven strategies can reduce the risk of implementation failure, thereby optimising resource use to benefit health outcomes. FUNDING: European Commission Horizon 2020. TRANSLATIONS: For the Greek, Russian and Vietnamese translations of the abstract see Supplementary Materials section.

Provision of Palliative Care in Patients with COPD: A Survey Among Pulmonologists and General Practitioners.

INTRODUCTION: Patients with advanced chronic obstructive pulmonary disease (COPD) experience significant symptom burden, leading to poor quality of life. Although guidelines recommend palliative care for these patients, this is not widely implemented and prevents them from receiving optimal care. OBJECTIVE: A national survey was performed to map the current content and organization of palliative care provision for patients with COPD by pulmonologists and general practitioners (GPs) in the Netherlands. METHODS: We developed a survey based on previous studies, guidelines and expert opinion. Dutch pulmonologists and GPs were invited to complete the survey between April and August 2019. RESULTS: 130 pulmonologists (15.3%; covering 76% of pulmonology departments) and 305 GPs (28.6%) responded. Median numbers of patients with COPD in the palliative phase treated were respectively 20 and 1.5 per year. 43% of pulmonologists and 9% of GPs reported some formalized agreements regarding palliative care provision. Physicians most often determined the start of palliative care based on clinical expertise or the Surprise Question. 31% of pulmonologists stated that they often or always referred palliative patients with COPD to a specialist palliative care team; a quarter rarely referred. 79% of the respondents mentioned to often or always administer opioids to treat dyspnea. The topics least discussed were non-invasive ventilation and the patient's spiritual needs. The most critical barrier to starting a palliative care discussion was difficulty in predicting the disease course. CONCLUSION: Although pulmonologists and GPs indicated to regularly address palliative care aspects, palliative care for patients with COPD remains unstructured and little formalized. However, our data revealed a high willingness to improve this care. Clear guidance and standardization of practice are needed to help providers decide when and how to initiate discussions, when to involve specialist palliative care and how to optimize information exchange between care settings.

Publisher Correction: Implementing a context-driven awareness programme addressing household air pollution and tobacco: a FRESH AIR study.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study.

BACKGROUND: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. METHODS: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. DISCUSSION: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NL7644 . Registration date: April 7, 2019.

Implementing a context-driven awareness programme addressing household air pollution and tobacco: a FRESH AIR study.

Most patients with chronic respiratory disease live in low-resource settings, where evidence is scarcest. In Kyrgyzstan and Vietnam, we studied the implementation of a Ugandan programme empowering communities to take action against biomass and tobacco smoke. Together with local stakeholders, we co-created a train-the-trainer implementation design and integrated the programme into existing local health infrastructures. Feasibility and acceptability, evaluated by the modified Conceptual Framework for Implementation Fidelity, were high: we reached ~15,000 Kyrgyz and ~10,000 Vietnamese citizens within budget (~€11,000/country). The right engaged stakeholders, high compatibility with local contexts and flexibility facilitated programme success. Scores on lung health awareness questionnaires increased significantly to an excellent level among all target groups. Behaviour change was moderately successful in Vietnam and highly successful in Kyrgyzstan. We conclude that contextualising the awareness programme to diverse low-resource settings can be feasible, acceptable and effective, and increase its sustainability. This paper provides guidance to translate lung health interventions to new contexts globally.

The socioeconomic burden of chronic lung disease in low-resource settings across the globe - an observational FRESH AIR study.

BACKGROUND: Low-resource settings are disproportionally burdened by chronic lung disease due to early childhood disadvantages and indoor/outdoor air pollution. However, data on the socioeconomic impact of respiratory diseases in these settings are largely lacking. Therefore, we aimed to estimate the chronic lung disease-related socioeconomic burden in diverse low-resource settings across the globe. To inform governmental and health policy, we focused on work productivity and activity impairment and its modifiable clinical and environmental risk factors. METHODS: We performed a cross-sectional, observational FRESH AIR study in Uganda, Vietnam, Kyrgyzstan, and Greece. We assessed the chronic lung disease-related socioeconomic burden using validated questionnaires among spirometry-diagnosed COPD and/or asthma patients (total N = 1040). Predictors for a higher burden were studied using multivariable linear regression models including demographics (e.g. age, gender), health parameters (breathlessness, comorbidities), and risk factors for chronic lung disease (smoking, solid fuel use). We applied identical models per country, which we subsequently meta-analyzed. RESULTS: Employed patients reported a median [IQR] overall work impairment due to chronic lung disease of 30% [1.8-51.7] and decreased productivity (presenteeism) of 20.0% [0.0-40.0]. Remarkably, work time missed (absenteeism) was 0.0% [0.0-16.7]. The total population reported 40.0% [20.0-60.0] impairment in daily activities. Breathlessness severity (MRC-scale) (B = 8.92, 95%CI = 7.47-10.36), smoking (B = 5.97, 95%CI = 1.73-10.22), and solid fuel use (B = 3.94, 95%CI = 0.56-7.31) were potentially modifiable risk factors for impairment. CONCLUSIONS: In low-resource settings, chronic lung disease-related absenteeism is relatively low compared to the substantial presenteeism and activity impairment. Possibly, given the lack of social security systems, relatively few people take days off work at the expense of decreased productivity. Breathlessness (MRC-score), smoking, and solid fuel use are potentially modifiable predictors for higher impairment. Results warrant increased awareness, preventive actions and clinical management of lung diseases in low-resource settings from health policymakers and healthcare workers.

High COPD prevalence at high altitude: does household air pollution play a role?

Studies comparing chronic obstructive pulmonary disease (COPD) prevalence across altitudes report conflicting results. However, household air pollution (HAP), a major COPD risk factor, was mostly not accounted for in previous analyses and never objectively measured. We aimed to compare the prevalence of COPD and its risk factors between low-resource highlands and lowlands, with a particular focus on objectively measured HAP.We conducted a population-based, observational study in a highland (∼2050 m above sea level) and a lowland (∼750 m above sea level) setting in rural Kyrgyzstan. We performed spirometry in randomly selected households, measured indoor particulate matter with an aerodynamic diameter <2.5 µm (PM2.5) and administered a questionnaire on other COPD risk factors. Descriptive statistics and multivariable logistic regressions were used for analyses.We included 392 participants: 199 highlanders and 193 lowlanders. COPD was more prevalent among highlanders (36.7% versus 10.4%; p<0.001). Their average PM2.5 exposure was also higher (290.0 versus 72.0 µg·m-3; p<0.001). In addition to high PM2.5 exposure (OR 3.174, 95% CI 1.061-9.493), the altitude setting (OR 3.406, 95% CI 1.483-7.825), pack-years of smoking (OR 1.037, 95% CI 1.005-1.070) and age (OR 1.058, 95% CI 1.037-1.079) also contributed to a higher COPD prevalence among highlanders.COPD prevalence and HAP were highest in the highlands, and were independently associated. Preventive interventions seem warranted in these low-resource, highland settings. With this study being one of the first spirometry-based prevalence studies in Central Asia, generalisability needs to be assessed.