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Introduction
In developed countries, such as Portugal, there has been a consistent rise in average life expectancy, primarily attributed to advancements in scientific medicine, implementation of public health interventions, and enhanced availability of innovative and efficacious therapies 1. Nevertheless, this positive trend is accompanied by a surge in the prevalence of chronic conditions, specifically respiratory diseases 2. Respiratory diseases contribute substantially to both morbidity and mortality, ranking as the third most common cause of death globally, following cardiovascular diseases and stroke, particularly among individuals aged 65 and above 2,3.
Chronic obstructive pulmonary disease (COPD) stands as the primary cause of fatality within the realm of respiratory diseases, resulting in death of approximately 3.2 million individuals annually 2-5. The “Health at a Glance - Europe 2022” report has recognized COPD as a prominent preventable cause of death since 2019 2, highlighting the potential for reduction through the implementation of prevention and disease management strategies beyond the hospital setting 2,6. In Portugal, according to the Burden of Obstructive Lung Disease study, published in 2013, COPD ranks among the most prevalent chronic health conditions, affecting an estimated 14.2% of individuals aged 40 and above, with a significant proportion of cases going undiagnosed 1,2,7. Respiratory diseases are also accountable for 19% of in-hospital mortality 2,8. COPD causes persistent and progressive respiratory symptoms, encompassing dyspnea (difficulty in breathing), coughing, and excessive production of sputum 9. The progression of the disease is intricately linked to the severity and frequency of exacerbations, which have both short-term and long-term clinical implications 10. COPD exacerbations significantly impact the prognosis of the disease, amplifying its overall severity by diminishing lung function and elevating morbidity and mortality rates 11. Specifically, the occurrence and frequency of COPD exacerbations are closely associated with an increased risk of hospitalization, an increase in cardiovascular events, increased levels of anxiety and depression, limitations in physical activity, an increase in individual healthcare expenditure, an increase in healthcare-related costs, and a decrease in the quality of life of individuals with COPD 10,12-15.
Therefore, COPD exerts a significant economic burden 16. The direct costs attributed to COPD amount to 6% of the total healthcare expenditure within the European Union, corresponding to EUR 38.6 billion annually and encompassing 56% of the overall expenditure on treating respiratory diseases 17. Nevertheless, the impact of COPD extends beyond the direct costs alone. The functional limitations imposed by the disease, impeding individuals from carrying out daily tasks independently, can result in heightened reliance on caregivers. Moreover, this, in turn, contributes to additional indirect costs arising from work absenteeism and decreased productivity 13. In terms of disease burden, the global burden of disability-adjusted life years attributed to COPD amounted to approximately 81.6 million, signifying the substantial impact and disabling nature of COPD on affected individuals 18.
Considering these observations, the current scenario prompts the emergence of the following scientific questions: What are the main barriers preventing the most appropriate follow-up of individuals with COPD and what are the key approaches to mitigate these barriers? In response to these queries, the objective of this study was to identify and establish a consensus regarding the impediments encountered during the follow-up of individuals with COPD, along with potential strategies to improve these challenges. Additionally, the study sought to explore plausible strategies for preventing exacerbations and mitigating associated complications.
Methods
Study Design
To fulfil the predetermined objectives of this study, the Delphi technique was performed. The Delphi technique, widely utilized in qualitative research, is a consensus-building methodology aiming to attain agreement on a complex issue through a systematic forecasting process that leverages the collective expertise of a group of specialists 19,20. This technique represents a dependable tool for generating novel concepts and delineating the trajectory of future-oriented research endeavors 21. The technique entails a meticulously structured board involving the participation of recognized experts in relevant fields of study, possessing profound knowledge of the subject matter at hand, thereby ensuring their credibility 20,22. This study convened a multidisciplinary panel of experts, encompassing seven physicians (three family medicine physicians, three pneumologists, and one internal medicine physician), two nurses, two health managers (one from primary care and one from hospital care), two policymakers, one expert in public health and health promotion, and one representative from patient organizations.
The Delphi process comprises three successive rounds of data collection 19,23. The main objective of the initial round was to identify the principal constraints encountered within the Portuguese Health System regarding COPD management, as well as to identify the key challenges related to the identification and management of COPD exacerbation risk within the same context. To achieve this goal, a set of six open-ended questions was posed.
In the first question, the experts were tasked with identifying persistent barriers and constraints to COPD management in Portugal, despite the advancements and improvements made thus far. The second question aimed to gather insights on potential actions to enhance the effectiveness of COPD prevention in Portugal. The third question focused on how COPD diagnosis is currently conducted in Portugal and sought to identify factors contributing to delayed diagnosis. Moving to the fourth question, the experts were requested to express their opinions on the referral process for COPD patients within the Portuguese Health System and propose suggestions for improvement. The fifth question requested the experts to propose strategies for reducing exacerbations and lessening the burden of COPD in Portugal. Finally, in the sixth question, the experts were asked to provide their comments on the available resources and tools for the adequate follow-up of individuals with COPD.
After the initial round, which consisted of open-ended questions, the second round involved the presentation of indicators derived from the previous round. The experts were then prompted to indicate their level of agreement with each item. An online form was used to allow experts to express their agreement using a Likert scale, which included options such as “agree,” “neither agree nor disagree,” and “disagree.” Moreover, experts were given the opportunity to propose new indicators that they deemed relevant.
In the third and final round, the distribution of votes for indicators that did not achieve consensus in the previous round was presented graphically. Experts were given the chance to maintain or modify their level of agreement with these indicators. Additionally, voting was conducted for the indicators introduced during the second round. The results of each round were consistently shared with the group anonymously to mitigate any potential biases stemming from experts' apprehension about their opinions being negatively perceived or influenced by personal factors 23.
Data Analysis
A consensus threshold of 73.3% agreement (requiring at least 11 out of 15 experts) was established for each indicator. In other words, for an indicator to be considered consensual, it necessitated a minimum of 73.3% agreement among responses, encompassing the options of “agree,” “neither agree nor disagree,” or “disagree.” Upon completion of the Delphi panel, the indicators obtained were categorized into two distinct groups: (1) identification of barriers, challenges, and constraints in COPD management and (2) identification of operationalizable strategies to enhance prevention, referral processes, reduce exacerbations, and alleviate the burden associated with this disease.
Results
A total of thirty experts were invited to participate in the Delphi technique, of which 50% expressed their agreement to participate and maintained full cooperation throughout all three rounds, resulting in a 100% response rate. Across the six questions posed, a total of 134 valid indicators were obtained. Out of these, 108 indicators achieved consensus, with a predominant level of agreement in the “agree” category. Among the consensus indicators, 18 pertained to the group of barriers, challenges, and constraints in COPD management, while 90 indicators were associated with the group of action strategies aimed at improving prevention and referral processes, reducing exacerbations, and alleviating the burden of this disease.
Regarding the results pertaining to barriers, challenges, and constraints in COPD management, several indicators garnered significant consensus within this group. The indicators that achieved the highest level of agreement were as follows: “late diagnosis due to the lack of spirometry in primary healthcare” (100% agreement), “late performance of spirometry” (100% agreement), “late diagnosis due to patients’ underestimation of symptoms” (93.3% agreement), and “low use of spirometry in primary healthcare” (93.3% agreement). A detailed summary of these indicators can be found in online supplementary Table S1 (for all online suppl. material, see https://doi.org/10.1159/000535474). For the purpose of content analysis, the findings pertaining to action strategies were categorized into three distinct groups: 1 action strategies aimed at enhancing the prevention of COPD (25 indicators), 2 action strategies aimed at improving the referral process for COPD (24 indicators), and 3 action strategies aimed at reducing exacerbations and alleviating the burden associated with COPD (41 indicators).
Considering the key findings regarding action strategies for COPD prevention, several indicators garnered significant consensus among the experts. The indicators with the highest level of agreement were as follows: “implementation of smoking prevention measures through smoking cessation campaigns” (100% agreement), “emphasis on training and capacity-building campaigns for primary prevention of exposure to risk factors” (100% agreement), “establishment of early smoking intervention teams for monitoring purposes” (100% agreement), “ smoking cessation appointments in primary healthcare, with increased proximity” (100% agreement), “increased implementation of smoking prevention campaigns in schools and through media channels” (100% agreement), “create means for early help in smoking cessation” (100% agreement), and “existence of follow-up teams in early smoking intervention” (100% agreement). Further details on these indicators can be found in online supplementary Table S1.
Simultaneously, experts voted on action strategies to enhance COPD referral. These strategies, as most voted, include: “enhancement of information system sharing and interoperability” (100% agreement), “improved coordination between primary healthcare and hospitals” (93.3% agreement), “empowerment of patients in their care journey” (93.3% agreement), “integrated collaborative approaches to patient management” (93.3% agreement), and “implementation of an alternative referral model to prevent patients from being caught in a “ping-pong” effect” (93.3% agreement). Additional information about these indicators can be found in online supplementary Table S1.
The action strategies with the highest consensus level, targeting the reduction of COPD exacerbations and the alleviation of disease-related burdens, are as follows: “adequacy of therapeutic regimens to the severity and Global Initiative for COPD assigned” (100% agreement), “improve clinical information sharing” (100% agreement), “improve articulation between the hospital, primary healthcare, and home care” (100% agreement), and “greater empowerment of patients and professionals” (100% agreement). Additional information concerning these indicators can be found in online supplementary Table S1. The comprehensive list of indicators, encompassing both “consensus” and “nonconsensus” indicators put forth by the experts, is provided in online supplementary Table S1 for reference.
Discussion
The application of the consensus-building technique in this study facilitated the identification of a set of consensus indicators pertaining to potential constraints in patient follow-up, along with strategies to mitigate these challenges, as determined by a panel of 15 experts in pulmonology-related fields from Portugal. The results obtained underscore the imperative of investing in respiratory health 24. Prevention and prompt treatment of exacerbations were acknowledged as crucial strategies in managing the disease and reducing associated morbidity and mortality, thereby emphasizing the significance of timely therapy and its impact on the prognosis 25,26. According to the experts, investing in the training and education of healthcare professionals on COPD, particularly in primary healthcare settings, emerges as a pivotal factor for effective prevention and timely diagnosis 6,27,28. By fostering the development of family medicine and respiratory health-specialized nurses in primary care, there is potential for the screening and management of mild and moderate stages of COPD at this level, thereby minimizing excessive referrals to hospital care and optimizing resource utilization 6,27,28. It is of utmost importance to enhance coordination, integration, and collaboration among primary healthcare, hospital care, home care, and/or outpatient care, while also considering the decentralization of hospital competencies as part of a comprehensive approach 29.
Simultaneously, the experts emphasized the significance of embracing “digital transition.” Leveraging digital platforms to enhance the response to COPD entails the utilization of telemonitoring and/or telerehabilitation services for remote monitoring and rehabilitation, enabling timely access to information on vital functions and identification and prevention of exacerbations 17,30,31. By employing telehealth services, COPD patients can minimize their visits to healthcare facilities, thus saving time and resources, receiving appropriate care, and enhancing their access to specialized services 14,17,31-33.
Multiple findings corroborated the significance of prevention and early identification strategies, including smoking cessation, timely utilization of spirometry, and health promotion/education 17,27,34. Individually, the findings underscored the necessity of enhancing COPD literacy as it plays a pivotal role in symptom recognition, disease awareness, and timely initiation of therapy, thereby facilitating improved disease management 17,27. Furthermore, the experts highlighted the imperative of developing COPD indicators specifically tailored for primary healthcare, encompassing pediatric indicators as well 34.
The feasibility of conducting screening and testing for respiratory diseases, including spirometry, in pharmacies was proposed as a potential solution to facilitate early detection and increase awareness of these diseases, which is consistent with the results of the scoping review conducted by Valentino et al. 35, which reports that pharmacist-provided spirometry services can increase patient access to diagnostic tests and primary care providers’ access to results. In addition, our experts also highlighted the crucial role of pharmacists in providing education on the proper use of respiratory equipment, which is also consistent with other studies 36-39. Furthermore, engaging other professionals such as respiratory nurses or cardiopulmonary technicians in pharmacies or primary care clinics to provide education and address concerns could have a profoundly positive impact on the community 40.
Environmental pollution exerts a direct impact on the onset and progression of respiratory diseases, emphasizing the significance of intervention at this level 17,41-43. Controlling pollution levels, both outdoors and indoors, as well as monitoring pollen concentrations, holds crucial importance for individuals with respiratory conditions 41,44,45. In 2022, the World Health Organization reported that 23% of all deaths from COPD in adults in low- and middle-income countries are due to exposure to household air pollution 46. According to Raju et al. 41, indoor air pollution is associated with poor lung development, an increased risk of respiratory tract infections, and an increase in the prevalence and morbidity attributable to asthma and COPD. Therefore, patients should be more conscious and vigilant in monitoring these levels 34,47. In addition, there is a need to develop guidelines and improve the accessibility of information on pollen and pollution levels for these patients 46.
Despite extensive efforts to reduce the prevalence of COPD and the advancements in scientific knowledge in this field, there are still various areas in healthcare that require improvement. The COVID-19 pandemic has underscored the significance of individual and collective respiratory health, emphasizing the need to continue conducting research on COPD management 24. It is essential to continuously update clinical protocols and guidelines, invest in health promotion initiatives, and enhance COPD literacy 24.
Strengths and Limitations
In the final round, a significant increase in consensus was observed. It is important to acknowledge that one of the potential limitations of the Delphi technique is the possibility of experts feeling pressured to reach a consensus, which may hinder the true expression of their opinions. However, given the time-consuming nature of this method, it can be assumed that the participating experts had a genuine interest in the subject matter and were motivated to provide their valuable insights.
Considering that the response rate was within the recommended range, it can be inferred that the specialists’ responses were a result of their authentic interest in the topic and that potential biases were minimized. Throughout the implementation of the Delphi method, the experts' comments facilitated a constructive discussion, which played a vital role in achieving consensus on numerous recommendations. Although the number of participants remained within the recommended range, it is worth noting that having a larger number of specialists would have further enriched the results and enhanced the robustness of the findings. To ensure the confidentiality and anonymity of the experts and their affiliated institutions, certain details regarding their identities were intentionally omitted from the manuscript in order to keep open and honest participation, free from external influences, judgments, or social and professional pressures.
By addressing these methodological considerations and maintaining a transparent and collaborative approach, this study has successfully generated valuable insights and recommendations from a diverse panel of experts in the field. These findings can serve as a foundation for future research, policy development, and clinical practice in COPD management.
Conclusion
This study has emphasized the critical importance of investing in respiratory health and recognizing the profound impact of COPD on patients, healthcare systems, and economies. The findings have highlighted the significance of prevention and timely treatment of exacerbations as key strategies for enhancing the management of COPD and reducing associated morbidity and mortality. Improving the coordination and integration of care across different levels, including the efficient integration of information systems and the decentralization of hospital competencies, emerged as essential factors for comprehensive COPD management.
The COVID-19 pandemic has further underscored the urgency of prioritizing actions to promote respiratory health and increase COPD literacy. It is crucial to maintain a dedicated focus on research and innovation in COPD management, constantly updating clinical standards and guidelines to ensure the most effective and up-to-date care practices.
Despite extensive efforts to decrease the prevalence of COPD, this study has revealed that there are still multiple areas where improvements can be made at all levels of care. Addressing these gaps requires continued collaboration among healthcare professionals, policymakers, and researchers to implement comprehensive strategies that encompass prevention, early detection, effective treatment, and patient education. By addressing these challenges and implementing the recommendations from this study, we can strive to improve the lives of individuals living with COPD, optimize healthcare resources, and mitigate the economic burden associated with this debilitating disease.
Statement of Ethics
Research ethics principles and applicable legal requirements were fully complied with. All methods were conducted following Portuguese and European relevant guidelines and regulations according to ethical self-assessment based on the assumptions of identification of ethical issues and the respective requirements adopted by the Fundação para a Ciência e Tecnologia (FCT). Informed consent was obtained from all subjects involved in the study.
Conflict of Interest Statement
This work has been supported by AstraZeneca Produtos Farmacêuticos Lda., a pharmaceutical company with a direct interest in COPD. However, AstraZeneca had no direct role in study design, data collection, and analysis or preparation of the manuscript. AstraZeneca Produtos Farmacêuticos Lda. has approved the decision to publish this work. A.S.C., B.R., F.D., and A.R.P. acknowledge the support of the NOVA National School of Public Health research and report no specific competing interests relevant to the submitted research. H.M. and S.H. are employees of AstraZeneca Produtos Farmacêuticos Lda. and report no other specific competing interests relevant to the research presented in this article. They have in place an approved plan for managing potential conflicts of interest arising from their involvement in scientific research.
Author Contributions
A.R.P., B.R., H.M., and S.H. were involved in the conception and design of the study. A.R.P., A.S.C., F.D., and B.R. conducted the study, analysis, and interpretation of the results. A.S.C., B.R., and A.R.P. wrote the first draft of the manuscript, and all authors edited, reviewed, and approved the final version of the manuscript. H.M. and S.H. reviewed the final version of the manuscript, with important contributions to the discussion.
