Discussion
To the best of the author’s knowledge, this is the first study to document COPD disease perceptions and knowledge among Indigenous patients, particularly from the NT of Australia. This study has demonstrated several key insights:
Indigenous patients with COPD are much younger and the majority reside in remote/rural communities in comparison to non-Indigenous patients.
SOB is the most common reason for hospital presentation.
Indigenous patients report different symptom manifestations compared with non-Indigenous patients, with a higher prevalence of cough, fever and sputum production.
Universally ‘poor’ knowledge of COPD was observed across study participants, with only 7% of Indigenous and 30% of non-Indigenous patients demonstrating an adequate understanding of COPD.
Though regular medication use was prescribed for three quarters of the cohort, only a quarter reported regular usage and a proportion of them reported uncertainty about the use of their medication.
59% of patients reported presenting to a primary or to a tertiary healthcare during an acute exacerbation.
Only a minority of patients reported having a written COPD action plan. Moreover, only 36% were receptive to having a COPD action plan.
Most patients had at least one prior hospital admission in the preceding 12 months; however, many Indigenous patients reported they would prefer that their respiratory condition managed in their local community.
Indigenous people worldwide, including Indigenous Australians, are reported to have a higher respiratory disease burden alongside higher healthcare utilisation.5–9 19–24 26–29 Poor disease awareness and self-management strategies of COPD are not uncommon among various ethnic populations, including in high-income countries.16 18 27 30 Despite literature portraying higher healthcare utilisation and hospital admission rates among Indigenous Australians due to COPD, there has been no prior studies illustrating the underlying reasons for this observation. Hence, demonstrating Indigenous patients’ perception of their disease, in particular, in relation to COPD self-management, knowledge on medications usage and healthcare utilisation as illustrated in this study is of a significant value in enhancing our knowledge in this arena for future interventions.
In this current study, we observed universally low disease awareness, though with a heightened presence among our Indigenous cohort. Several aspects of COPD disease perception from our study participants have been well illustrated in the Results section above. Previously, knowledge and adherence to pharmacotherapy among patients with COPD have consistently been reported to be low.31 In this study, the majority of patients were noted to have been prescribed with airway-directed inhaled pharmacotherapy, more specifically, ICS/long-acting β-agonists or ICS/long-acting β-agonists/long-acting muscarinic antagonists. Although most study participants had some knowledge of their medications, in particular, for inhalers, adherence to therapy as per recommendation appeared to be poor, at around 18%. There is sparse evidence in the literature addressing the utility and appropriate use of airway-directed inhaled pharmacotherapy among Indigenous patients with COPD. A recent study has demonstrated much higher yearly decline in forced expiratory volume in one second (FEV1) among Indigenous patients prescribed ICS with airway disease.32 Although oral theophylline is recommended and could be considered in the management of patients with COPD,17 33 in this study, theophylline was noted to be prescribed very infrequently. However, a significant proportion of Indigenous patients reported taking a tablet for their illness. It is not clear at this stage whether a ‘tablet’ like theophylline could be more applicable to Indigenous patients rather than inhalers, given the low adherence to inhaled pharmacotherapy observed in this study.
We also observed that only a negligible number of patients recalled having been provided with or had knowledge of having a COPD action plan. This is despite COPD action plan tools that have been developed specifically for Indigenous patients nearly a decade ago.34 Moreover, only a third of participants were receptive to having a COPD action plan, instead preferring to seek help from local PHC during COPD exacerbation. This may indicate that our approach to chronic disease management pathways may need differing strategies among Australian Indigenous remote population. Nonetheless, in the absence of well-established COPD management guidelines for Indigenous people, treatment interventions have to be tailored to individual patients’ preference and needs, along with education on their disease condition in a clinically and culturally relevant manner.
Lung function parameters are generally observed to be lower for Indigenous population in comparison to non-Indigenous.35–40 Direct comparisons of lung function data against patient experience of COPD symptoms and the effect of symptoms on daily life activities have not been explored in the past among Indigenous Australians. In the current study, a higher proportion of Indigenous patients were observed to have more severe airflow obstruction compared with non-Indigenous patients with COPD. This may indicate a more severe COPD disease burden among Indigenous patients. Previous studies have demonstrated that with more severe disease as measured by FEV1, the rate of hospitalisation increases.41 It is unclear if this is the case for the study participants in this study. Furthermore, symptoms reported differed between Indigenous and non-Indigenous patients, with a higher prevalence of cough, sputum production and fever noted among the former. There appeared to be a significant association between these symptoms and more severe airflow obstruction. However, given these symptoms were present at a higher rate among the Indigenous patients, and severity of airflow obstruction was marginally higher among the Indigenous cohort, it is uncertain if these symptoms are associated with severity, indigeneity or some coupling of both and the subsequent aftermaths.
Previous studies among Indigenous patients from the TEHS, NT region have reported a higher prevalence of concurrent presence of COPD and bronchiectasis.19–24 It may be reasonable to speculate that the disparity in symptom manifestations (cough and sputum) noted among Indigenous patients could be attributed to coexistent bronchiectasis and COPD. Airway clearance manoeuvres are paramount in the management of bronchiectasis;42 however, implementation or intervention outcomes are sparsely reported in the literature in the management of chronic respiratory conditions among Indigenous people.21 43 It is plausible that by providing dedicated chest physiotherapy/airway clearance programmes that are accessible and available for Indigenous people living in remote communities that we would see benefits not only in the overall management of chronic respiratory conditions but also in terms of outcomes such as recurrent hospital admissions due to exacerbations of airway disease.
As mentioned above, hospital admission data demonstrates unprecedented higher hospital admission rates for Indigenous patients with COPD.5–9 In this study, SOB was the predominant reason for hospital presentation. A recent study also demonstrated that SOB was the most common reason for hospital presentation.28 Additionally, a higher proportion of Indigenous patients were transferred to tertiary care hospital from other remote/regional health centres.28 In the current study, the majority of Indigenous patients resided in remote communities and preferred to seek help from local health centres when they become unwell and lacked COPD action plans. Moreover, many expressed that they prefer not to be transferred to tertiary care centres when their symptoms worsen. In conjunction with the preference for community treatment, there appears to be a higher threshold before seeking care or being transferred to tertiary care centres compared with non-Indigenous patients. Implementing strategies, in particular, managing SOB and providing education and support to community health workers caring for Indigenous patients with COPD, alongside providing self-management strategies, may decrease hospital presentations and associated healthcare cost and utilisation.10 11 17 Moreover, such programmes, including respiratory coordinated care programme have been demonstrated to be useful in preventing recurrent hospital presentations.44–46 For Indigenous patients, implementing such strategies may be of significant benefit in fulfilling their preference to be managed in their community and avoiding lengthy and undesired visits to the city.
It has been proven beyond reasonable doubt that patient awareness and knowledge is paramount in the holistic management of COPD, including preventing recurrent hospital admissions.11–18 30 31 41 42 44 46–51 This current study offers valuable insight into the scope of understanding and perceptions held by both Indigenous and non-Indigenous patients about their conditions as well as the performance of our health service in providing effective education and COPD action plans to promote patient understanding of COPD and self-management. A major strength of the current study is the relatively high proportion of Indigenous Australian patients with COPD interviewed. Previous reports from our centre have identified 140–150 patients with radiologically confirmed COPD.24 39 Furthermore, hospital linkage data using ICD code identified 110 Indigenous patients presenting with COPD from July 2020 to October 2021 (as yet unpublished). As such, it is plausible that the current study captured anywhere from 40% to 60% of current Indigenous COPD patients in the TEHS region. More recently, several aspects of respiratory health issues among Indigenous Australians from the TEHS region of the NT has been reported in the literature.19–24 28 32 35–40 52–66 Hence, this study could be considered as an important further step forward67 in addressing COPD disease awareness and knowledge in an Indigenous population. The findings of this study highlight the need for further improvement and implementation of strategies to deliver education and empowerment for Indigenous patients with COPD. Patients with knowledge of their condition are better able to self-manage their chronic disease, ultimately reducing PPH and thereby reducing the burden on the already stretched health resources in the NT of Australia, in addition to enabling patients to manage their condition in a location where they feel comfortable and connected to family and land. Further studies are warranted involving First Nations people in codesign and coimplementation of health services for better access to COPD care and prevention in a culturally and clinically relevant manner specifically tailored to the Indigenous Australian population.68
Limitations
The authors acknowledge the relatively small sample size, of which only 31% were non-Indigenous was less than would have been ideal to maximise statistical power; however, it is reasonable to accept this as a legitimate limitation given that the study scope in which patients were only opportunistically and randomly recruited from the RDH/RAPU admissions over a 15-month study period. Moreover, the interviews were conducted at the bedside/convenience of patients, directed and structured by healthcare staff. This leads to a potential authoritative imbalance, which may have impacted peoples’ answers as well as a time factor (due to potential external demands on the healthcare staff), which reduced the potential to fully elaborate on or delve deeper into various topics. The fact that for most patients, the interviews were undertaken in a hospital setting, would have altered their perception of the disease as opposed to if it had been done at home or in the patient’s community. The study population was limited to the subset of patients who presented to the RDH for COPD or unrelated reasons recruited by convenience sampling, including during the respiratory outreach visits. As a result, the population may not truly represent the entire population of Indigenous or non-Ingenious Australians in the wider TEHS, NT community with COPD. Nevertheless, this is the first study to represent COPD knowledge in an Indigenous Australian population and provides some invaluable key insights for further, dedicated research that will help elucidate management of COPD in this population.