What are the barriers to the diagnosis and management of chronic respiratory disease in sub-Saharan Africa? A qualitative study with healthcare workers, national and regional policy stakeholders in five countries

Objectives Chronic respiratory diseases (CRD) are among the top four non-communicable diseases globally. They are associated with poor health and approximately 4 million deaths every year. The rising burden of CRD in low/middle-income countries will strain already weak health systems. This study aimed to explore the perspectives of healthcare workers and other health policy stakeholders on the barriers to effective diagnosis and management of CRD in Kenya, Malawi, Sudan, Tanzania and Uganda. Study design Qualitative descriptive study. Settings Primary, secondary and tertiary health facilities, government agencies and civil society organisations in five sub-Saharan African countries. Participants We purposively selected 60 national and district-level policy stakeholders, and 49 healthcare workers, based on their roles in policy decision-making or health provision, and conducted key informant interviews and in-depth interviews, respectively, between 2018 and 2019. Data were analysed through framework approach. Results We identified intersecting vicious cycles of neglect of CRD at strategic policy and healthcare facility levels. Lack of reliable data on burden of disease, due to weak information systems and diagnostic capacity, negatively affected inclusion in policy; this, in turn, was reflected by low budgetary allocations for diagnostic equipment, training and medicines. At the healthcare facility level, inadequate budgetary allocations constrained diagnostic capacity, quality of service delivery and collection of appropriate data, compounding the lack of routine data on burden of disease. Conclusion Health systems in the five countries are ill-equipped to respond to CRD, an issue that has been brought into sharp focus as countries plan for post-COVID-19 lung diseases. CRD are underdiagnosed, under-reported and underfunded, leading to a vicious cycle of invisibility and neglect. Appropriate diagnosis and management require health systems strengthening, particularly at the primary healthcare level. Five studies were independently conducted in Kenya, Malawi, Sudan, Tanzania and Uganda between 2018 and 2019 based on a constructivist philosophical paradigm using qualitative study methods19 20 to collect data and to perform data validation, analysis and interpretation to answer the study questions. Ministry of Health (MoH) officials and other healthcare policy stakeholders were purposively sampled for their roles and experiences in policy design and implementation alongside health workers’ experience in the management of CRD (table 1). To secure interview appointments, participants were contacted through email, phone or verbally, as appropriate. Public healthcare facilities were selected to include both urban and rural settings and different facility levels (table 2). All served populations with high prevalence rates of TB and other lung conditions. The distribution of participants across the five case study countries *Senior clinicians. Distribution of healthcare facilities in the five case study countries Key informant interviews (KIIs) with policy stakeholders (online supplemental appendices 1–3) explored opinions about prioritisation of CRD; (un)availability and operationalisation of CRD policies; systemic factors enhancing or impeding provision of healthcare services for CRDs; and opinions on how systems could be improved. In-depth interviews (IDIs) with healthcare workers (online supplemental appendices 4–6) explored their experiences in diagnosing and managing CRD; availability of diagnostic equipment and medicines; experience of training; and their perceptions of what has worked well or not, in management of CRD. Semistructured interview guides were developed broadly aligning with the health systems’ building blocks.21 Interviews were conducted from May 2018 to March 2019, by experienced qualitative researchers in English, or the local languages as appropriate, and digitally recorded with consent. These face-to-face interviews took place in quiet, private rooms within the workplaces of the participants, to protect participants’ confidentiality, minimise disruptions and ensure quality of audio recordings. The discussions took around 40 minutes. The researchers in Sudan, Malawi and Tanzania had no prior relationships with the participants. In Malawi, a female white Canadian researcher (NK) conducted some of the interviews (others were done by a Chichewa-speaking research assistant) and came from an outsider perspective. The researcher from Uganda (IA) is a respected female medical doctor who was known to some of the participants. This positionality required critical reflection on being an ‘insider’ to the health system during the research period. Similarly, in Kenya, affiliation of the male researcher (SM) to the Kenya Medical Research Institute, a government agency, may have shaped trust and response to the study, though the effect on issues is unknown. The researchers jotted notes about participants’ comments and the researcher’s own thoughts during the interviews; they used memoing as soon as possible after an interview and during the transcription of recordings. Recordings were transcribed verbatim and translated to English for analysis. Field notes complemented the audio recordings. bmjopen-2021-052105supp001.pdf bmjopen-2021-052105supp002.pdf bmjopen-2021-052105supp003.pdf bmjopen-2021-052105supp004.pdf bmjopen-2021-052105supp005.pdf bmjopen-2021-052105supp006.pdf Data collection was preceded by a common training in policy (2018) for the researchers and followed by joint analysis meetings that discussed similarities and differences between country-specific study findings; the codes and topics were identified within each country and combined during analysis and the respective country teams reread transcripts to confirm accuracy and identify emerging themes. Authors SM, IA, RT, MT and EHS participated in the coding meetings and determination of the final codebook. Initial codebooks were developed from the broad interview guide topics, then updated inductively as novel codes emerged. A final codebook was discussed, further refined and applied to the data, using the framework approach,22 with analysis supported by NVivo V.11.0 (QSR International 1999) software. The main themes and subthemes were organised through NVivo nodes and subnodes, respectively, and subsequently into charts. An exploration of emerging patterns led to the identification of final themes with selected quotes used to illustrate specific findings. The WHO, in 2007, proposed a framework describing health system functions in terms of six core interdependent components or ‘building blocks’: (1) service delivery; (2) health workforce; (3) health information systems; (4) access to essential medicines; (5) financing and (6) leadership/governance.21 Effective coordination and optimal performance of these health system blocks would theoretically enhance achievement of health system goals, that is, ‘improving health and health equity, in ways that are responsive, financially fair, and make the best, or most efficient, use of available resources’.21 We used the WHO health systems building blocks to frame our exploration at strategic and service delivery levels. A picture emerged of neglect of CRD at each level of the systems and for each building block with consequences across the whole system. CRD policy availability varied between countries. Kenya and Tanzania have fully developed and adopted policy strategies for lung health23 24 and the national and district stakeholders were aware of this; however, few healthcare workers were aware of the policies or where to find them. There was no standalone policy for CRD in Uganda and in Malawi; CRD was embedded within non-communicable disease (NCD) policy, which was in draft, with limited awareness among all levels of participants. In Sudan, there was no specific policy for CRD. I do not know whether there is an existing policy for TB and CRD. There is a general strategy; the national health policy that generally addresses chronic diseases. (KII-F, Sudan Federal-MoH official) In all five contexts, policy stakeholders associated the limited data on burden of disease with low visibility and low domestic budget allocations for CRD as shown by this typical quote: For COPD we don’t have data, we don’t know its prevalence, we don’t know its incidence, we don’t know its mortality. (IDI national informant, Tanzania) None of the study countries had comprehensive population surveys on CRD, but Sudan, Kenya and Uganda reported research evidence about asthma, COPD and the growing burden of CRD. In Malawi, participants noted that CRD were not included in the recent nationwide burden of disease study and went further to highlight the lack of data on cost-effectiveness. So [CRD] never feature in the cost effectiveness analyses that allow for their prioritization, benchmarked against the other priorities where there is evidence….for chronic respiratory disease we have to recognize that the evidence base for the country is very tiny. So being able to advocate beyond, the NCD Department into the Treasury, into the Health Sector Strategic Plan, is multiple steps away. (Malawi-KI 18, researcher) Neither were routine data able to fill the evidence gaps due to a lack of appropriate data collection tools and shortages of health information and records officers. Participants in all the five countries emphasised the need to address these gaps in developing investment cases for CRD at national level. You perform a study and show them the results. How many are affected? How many are disabled? How many lose their jobs? How many houses lose support? If you provide such work, you might be able to convince the (national treasury) officials. (KII-S5, Gezira State, Sudan MoH official) The health system financing arrangements in all the study countries were reported as being heavily dependent on external partners. CRD were perceived to be given low priority by donors because of their generally non-infectious nature and the perception that they were less fatal than infectious diseases such as malaria, HIV/AIDS and TB, and maternal and child health conditions. Even within the NCD departments in the study countries, efforts and resources are majorly directed towards cancer, diabetes, hypertension and other cardiovascular diseases. We have some reasonable data on the burden of asthma, but asthma doesn’t do one thing, doesn’t kill people that much and so because it doesn’t kill, it doesn’t get the attention it should get… everybody gets worried about things that kill (TB, malaria, HIV/AIDS, diabetes, cancer) and not those that give you chronic illness. (Kenya, KII-KD) Positive steps in data collection and policy development were also described. In response to a global spotlight on NCDs and recent increased donor interest, the Kenyan and Tanzanian governments plan to close the evidence gap by capturing CRD data in routine health facility tools, and subsequent nationwide surveys like the Demographic and Health Surveys. We are refining the tools to better capture the NCDs and have specific NCD registers like in the general outpatient settings. (KII, Kenya-MoH, national level) At the time of data collection, Kenya was in the process of ratifying the protocol to eliminate illicit trade in tobacco products, and Uganda had banned tobacco smoking in public, tobacco advertising, promotion and sponsorship, and limited sales. This suggests a heightened prioritisation of an important risk factor of CRD on the policy agenda, with potential for downstreaming policy interventions. Key service-level barriers arising from policy failures included challenges in accessing CRD diagnostics and medicines, limited reporting, and low confidence and skill in diagnosis and management. There was a disconnect between the perceptions of policy stakeholders, which reflected what was available on paper, and the front-line health workers, who reported feeling ill-equipped to attend patients in practice. Participants universally agreed that the entry point to CRD diagnosis in their TB-endemic contexts required the exclusion of active TB disease in chronic cough. Diagnostic capacity was defined as a combination of sputum screening, with the availability of radiology, lung function testing, skilled staff and diagnostic and treatment algorithms for the common CRD (asthma, post-TB lung disease and COPD). While each study country had chest clinics at tertiary hospitals with some level of equipment and expertise, only TB screening had been systematically decentralised at lower levels. Challenges were described in each aspect of diagnosis, with patients often paying out-of-pocket costs. All countries reported delays in sputum screening. In some instances, these delays extended to more than a week and were associated with additional costs to patients and subsequent loss to follow-up. Finally, the widespread lack of (or dysfunctional) X-ray equipment and lack of qualified personnel reported in lower-level public facilities in Kenya, Malawi, Uganda and Tanzania meant that patients had to seek chest X-rays (and CT scans) from private healthcare providers, whose costs were unaffordable to most. The lack of peak flow metres and spirometry machines meant that patients requiring lung function testing were referred to the national teaching and referral hospitals. Yeah, there was a time, we also [provided spirometry] but …our machine broke down … when we see they are needing that spirometry we send them to Kenyatta National Hospital. (Healthcare worker, Kenya) In Tanzania, participants noted that despite the recommendation to have peak flow metres at the primary healthcare level, none were available and not a single facility (including the referral hospital) offered spirometry. In Kenya, Malawi, Sudan and Uganda, the use of spirometry was reported to be limited to tertiary hospitals with international research collaborations, where training and equipment are maintained through grants from external partners. Although some policy-level stakeholders thought otherwise, health workers at the lower-level hospitals in all countries expressed dissatisfaction with the lack of peak flow metres and spirometers. In Malawi, there were conflicting reports on the distribution of spirometry services across facilities. While policymakers claimed that all tertiary hospitals had spirometers, healthcare workers reported that spirometers were only available at one teaching hospital as part of a research project. According to majority of key informants in Kenya, Uganda and Tanzania, most healthcare workers had not received training on the latest diagnostic procedures for CRD, including the use of spirometry: Honestly, we have not received any training for CRD; we used to go for TB trainings only. (IDI, healthcare worker, Tanzania) Malawian participants described a successful pilot decentralising CRD training, but this was yet to be scaled up nationally. Participants in all contexts emphasised the need to improve in-service training countrywide. In-service training opportunities were ad hoc and often ‘erratic’ (Sudan), mostly supported by specific programmes, including research projects (eg, Uganda), non-governmental organisations and pharmaceutical companies promoting specific products, and characterised by low coverage of necessary staff. …we started a program with some collaborative partners, … they bring health workers from some districts, and we come and do modules to understand for example what asthma is, how its diagnosed what is the best treatment, because in [medical] school frankly, people don’t learn so much for the benefit of the wider community. (MoH consultant physician, Uganda) Most of the available training focused on TB. In Tanzania, this was to the exclusion of CRD. In Kenya, CRD was added on to TB training. Healthcare workers in Kenya reported difficulties in accessing professional training, within the devolved government set-up. Lack of financial sponsorship from government, and a requirement that they resign if they applied for full-time study, imposed steep opportunity costs. Standard processes of communicating guidelines from national policy level to service delivery levels were felt to be inadequate; for example, healthcare workers in Kenya described learning about asthma management guidelines incidentally, during internet use or informal discussions with colleagues. There was limited awareness of treatment guideline updates with many clinicians still prescribing available oral salbutamol instead of inhalers, despite lack of evidence for efficacy. Likewise, in Tanzania, although the CRD guidelines were available on the MoH website and copies were seen at the sites, participants seemed unaware of their content. Restrictive policy guidelines and user fees imposed barriers to accessing corticosteroid inhalers. For example, beclomethasone is classified as a central facility-level medicine in Malawi that required international procurement protocols prone to delays of 4–7 months. In Tanzania, only bronchodilators, injectable and oral steroids for acute asthma are allowed at lower levels of service provision. Similarly, in Uganda, some medicines were restricted at the primary level. In contrast, in Kenya, bronchodilators and corticosteroids have been included in pharmacy order forms for primary healthcare facilities where they are provided free, implying shifts in practice to enhance access. In Sudan, asthma medications including inhalers and corticosteroids are supposed to be provided free of charge especially for patients in acute attacks. However, these are often not available in emergency rooms at both district and national levels, and when available, they are not always free of charge. Some of the services for asthma might be provided for free in the emergency room, but the majority of it is not provided for free although it should [be]. (KII-S4, Gezira State MoH official) Additionally, respondents from all five countries reported frequent drug stockouts even of the few CRD treatments included on essential medicines lists. At the time of data collection, the Kenya Medical Supplies Authority had stopped supplies to counties with outstanding bills. At primary care level in Tanzania and Uganda, drugs other than oral salbutamol were unavailable. Front-line clinicians at primary and district level felt ill-equipped to meet the complexity of cases. Healthcare workers explained that they lacked confidence in managing chronic CRD, although acute asthma attacks would be treated (nebulisers, oral aminophylline and epinephrine injections were all mentioned). We end up using treatments we are not supposed to (for example oral salbutamol) because that is what is available. (Uganda, clinical officer HC III) Key informants in Kenya and Uganda mentioned measures to enhance treatment capacity through review of the curricula for in-service training of clinical and medical officers, and for Kenya, the development of ‘module 13’ for community health volunteers, on identifying and managing asthma. We are working closely with KMTC [Kenya Medical Training College] itself, the Kenya Clinical Officers Council and the Nursing Council of Kenya to give NCD’s more prominence in the pre-service training. (KII-MoH, Kenya) Most healthcare workers, however, referred chronic asthma and other undiagnosed CRD conditions to higher-level facilities, but even at this level, limited capacity for management was described. All five countries reported very few pulmonologists. Malawi, for example, had only one specialist respiratory clinician, who often did not receive referrals because of low awareness among healthcare workers. Low healthcare workers’ diagnostic capacities implied that subsequent data inputs into the health information system may not provide reliable evidence of the CRD disease burden. Furthermore, the appropriate coding of diseases overall is undermined by shortage of health information officers and essential reporting tools. …then you find most of our medical personnel record ‘chronic cough’ which is not a diagnosis … we are championing for this cadre of staff (health records information officers) because they are very critical otherwise, we would continue making wrong decisions based on poor data. (KII-non-state actor, Kenya) This poor reporting was felt, in turn, to reduce awareness of CRD among healthcare workers of the need for clinical follow-up and of the overall scale of the problem.