Many factors impede people with chronic respiratory symptoms gaining access to effective care. These could be considered at the individual, societal and health system levels and are better documented for TB than for other CRDs:
Individual factors
A major obstacle to accessing effective care is the lack of awareness of the disease. For example, smokers often expect to have chronic respiratory symptoms and believe having these symptoms is ‘normal’. There is a wide range of population concepts of illness, including local ethno-medical models that may not easily accommodate concepts of chronicity and ‘incurability’[6]. This is often followed by a wide variety of ways in which different cultures organize themselves toward medical treatment.
To attend a health service, an individual needs to recognize the symptoms are abnormal, that symptoms are sufficiently severe to warrant attention and to perceive the gains of seeking help are greater than the costs involved. Decision-making processes are influenced by many factors, including gender, age, disability, socioeconomic status and others. For example, elderly individuals with chronic respiratory symptoms may adjust their lifestyle and attribute their symptoms to ‘age’, considering that nothing can be done or that the symptoms are not worth treating. Value judgments can be gender-aligned e.g. young married women or disabled people may feel discouraged to place value on their own health[7] or access services; masculinities in some contexts can also mitigate against seeking healthcare[8, 9]. Even where care is sought and a diagnosis is achieved, chronic illness can continue to cause disruption to physical capabilities, social identity and life trajectory, all of which pose challenges for long-term management of illness and require a holistic approach to providing care[10]. For example a study of perceptions and experiences of adults and children with asthma in rural South Africa found significant psychological impacts including high levels of fear and embarrassment[11].
Societal factors
Chronic respiratory symptoms - especially chronic productive cough - is often associated with stigma and assumed to be TB. TB has a high level of stigma that differentially affects women and men in different contexts depending on factors such as whether they are married or not[12, 13]. There are also high levels of stigma towards people with asthma who are often reluctant to accept their diagnosis. In Sudan, patients prefer to regard their condition as an allergy, with a high use of treatment inhalers and frequent admission to emergency rooms coupled with a very low use of preventer treatment. There is a common belief that the use of preventers leads to drug dependency and this impacts on marriage prospects and family reputation[14].
In settings with high HIV prevalence, a diagnosis of TB is often associated with HIV adding another layer of stigma[15–17]. In settings where tobacco smoking is common there can be a society ‘lack of sympathy’ for individuals with chronic respiratory symptoms who have ‘brought these on themselves’. These societal attitudes may discourage health-seeking behaviour. Furthermore social support has been identified as important to the effective management of chronic illness but the demands on carers and increased dependence by individuals experiencing chronic disease may place strains on family relations, jeopardizing their support[10, 18].
Health system factors
To provide effective care for patients with chronic respiratory symptoms a health system needs to be in place that is 1) accessible for people in need in an equitable way, 2) adequately staffed by skilled healthcare workers, 3) responsive to health systems information, 4) adequately resourced in terms of medical products and treatments for the delivery of chronic disease and exacerbation management, 5) affordable and 6) led and governed strategically. Figure 1
Accessibility (geographic, direct and indirect costs and social)
The individuals most in need of healthcare for chronic respiratory disease are often those who are disadvantaged on other fronts (e.g. poverty, disability, other forms of marginalization including living in remote areas), often in a way that is related to the underlying disease. For example, a woman who develops COPD as a result of her lifetime exposure to biomass smoke, who is responsible for attending to crops and looking after children, may face difficulties accessing care because of her specific roles in the family, a lack of decision making power and status and a lack of access to or control over funds to travel to seek care. A young man disabled by severe breathlessness, wheezing and coughing may face a different set of disability-driven challenges including limited educational and employment opportunities. Looking over the 10 to 20 year horizon, health systems will need to provide point of access services as close to the community as possible [CAHRD paper HS CTC] and systems will need to increase equity of access.
Information
Although most people with COPD and asthma live and die in low income settings[2], much of the research relating to these diseases focuses on high-income countries. International research programmes, particularly the BOLD and ISAAC initiatives have made important steps towards addressing this knowledge gap, but some areas, notably sub Saharan Africa, have been historically under-represented[3, 4].
Bronchiectasis could be considered a neglected disease from both a service and a research perspective. There are few data about the burden of disease in LMICs and limited evidence to guide practice.
The lack of academic capacity and funding for research can make building the evidence base around the epidemiology and management of CRDs most challenging.
Human resources
Healthcare workers with appropriate knowledge and skills are needed to deliver care to people with chronic respiratory symptoms. This knowledge and skills will need to cover the clinical assessment of patients, the conduct and interpretation of investigations and the institution of a management plan. Self-management approaches are important for the management of many of these long-term conditions their degree of control is variable over time. The ability to communicate effectively with patients (overcoming educational, social and linguistic barriers) about their condition and treatment is another important skill set in this context where partnership between clients and providers is often central to success. Many patients will need support managing the identity transition to being a person with a chronic illness or with a controlled long-term health condition that requires regular treatment[19].
The ability of individuals to competently undertake specific roles is more important than job position; some of these roles could be undertaken by individuals without formal qualifications who are closer to the communities [CAHRD paper HS CTC].
Offering treatment and support close to communities is important to reduce the direct and indirect costs of disease management to the individual and the household. CTC providers also offer advantages through their social proximity in supporting individuals with the social dimensions of chronic illness [CAHRD paper HS Capacity].
Medical products
Effective care of chronic respiratory diseases requires access to equipment and consumables needed to make and monitor diagnoses - particularly sputum examination and culture, assessment of airway physiology using peak flow meters and spirometers, chest X-rays and HRCT. Access to sputum examination and culture is especially important in the diagnostic evaluation of a patient with chronic cough and in the evaluation of patients with bronchiectasis and frequent infective exacerbations in whom less commonly encountered micro-organisms like pseudomonas can drive the process. Spirometry is essential to secure a diagnosis of COPD and is useful in the evaluation of patients with asthma. HRCT imaging is most useful for making the diagnoses of bronchiectasis and emphysema.
These diagnostic and monitoring technologies however are often unavailable in LMICs and when available, they are often unaffordable, poorly-maintained and lack quality control processes[20]. Where unavailable, pragmatic approaches to diagnostic and management decision-making have to be used, but these decision can be inaccurate and less efficient, especially where long-term treatments are initiated for incorrect diagnoses.
Service delivery: treatments
The lack of availability of basic effective treatments for airways diseases is a key factor limiting the management of these conditions. The essential treatments in themselves are relatively straightforward as are guidelines for their use[21]. Effective chronic disease management of all the conditions requires education and partnership to ensure avoidance of triggers (e.g. allergens) and disease drivers (e.g. exposure to tobacco and other biomass smoke), sputum clearance, correct use of medication, monitoring of the disease and prompt institution of action plans in the event of exacerbation and ongoing supplies of medication that often needs to continue life-long. These interventions require health promotion in its widest sense including ‘structural interventions’ to address the underlying drivers of health risks, since the poorest and most marginalized may be those least able to make choices and to avoid triggers or drivers of disease[22] [CAHRD Paper LH Biomass].
In terms of medication, all the chronic airways diseases can benefit from access to short-acting inhaled bronchodilators with the inhaled corticosteroid forming the cornerstone of asthma management. Access to oral corticosteroids, inhaled bronchodilators, oxygen and antibiotics is needed for effective treatment of exacerbations. There are important uncertainties in the detail such as the efficacy of treatments developed for smoking-related COPD in non-smokers with COPD but in terms of getting to the point of having access to basic effective treatments it is probably reasonable to largely extrapolate from existing (e.g. tobacco) literature [CAHRD Paper LH Biomass]. One could therefore conclude that from a treatment perspective, there already exist simple effective treatments and as such the development of new treatments (unless substantially more affordable) is less important than matching current and projected needs with currently available treatments in a sustainable way. The latter is arguably the key challenge for the management of airways diseases over the 10 to 20 year horizon.
Healthcare financing
Affordability is a critical determinant of access to investigations and treatment for people with airways diseases. The figure below from the Global Asthma Report 2011 illustrates the affordability of a month's supply of inhaled corticosteroid for asthma purchased from a private pharmacy presented as the number of days of wages required to purchase one inhaler: Figure 2
The month on month ongoing out of pocket costs of just one inhaler can be substantial and to the point of representing a catastrophic expenditure from the household's perspective. Individuals facing such costs may find themselves stuck between such high costs for an effective treatment on the one hand vs continuing to suffer ongoing chronic symptoms and a risk of exacerbations on the other [CAHRD Paper LH Costs]. Provision for such ongoing healthcare costs needs to be made explicitly in the design of health financing modalities such as social health insurance policies and essential healthcare packages, to ensure equity in universal healthcare coverage. Careful consideration of the priorities for getting maximum benefit for the least cost for the poorest people with chronic respiratory symptoms will also be needed
Leadership/Governance
The development of a strategic policy framework is required to enable the systematic strengthening of health systems to deliver improved care for chronic respiratory illnesses. The development of concrete chronic disease policies and oversight has been identified as an important element of developing effective chronic disease interventions[6]. The involvement of civil society, for example in the form of patient advocacy and support groups is likely to significantly shape the effectiveness of interventions and equity in outcomes[6].