AMSTERDAM — Noelle Morgan, a 56-year-old from the UK, has lived with asthma most of her life. But the condition is not a burden for her. “I am curious about it. I want to understand. I am deeply involved in my own care,” she said, speaking at the European Respiratory Society (ERS) 2025 International Congress. “I see myself as very equal to the healthcare professionals, and I believe on some occasions I could probably know more about my condition because I’m living and breathing it,” she said. “But not everyone is like me.”
The respiratory medical community is increasingly recognizing the importance of involving patients in managing chronic respiratory conditions. As Hilary Pinnock, PhD, professor of primary care respiratory medicine at The University of Edinburgh, Edinburgh, Scotland, pointed out, patients with a condition like asthma spend 120 minutes a year with a healthcare professional, she said. “Have you all worked out how many minutes of the year they’re actually managing their own asthma?” Pinnock asked. “Every patient with asthma is self-managing [the disease]. Our role is to support them in what they are doing and to enable them to do it better.” But she explained, this is not about handing over responsibility but about forming a partnership.
However, for many patients, especially those in low- and middle-income countries (LMICs), effective self-management remains a significant challenge, hampered by systemic barriers, socioeconomic factors, and a lack of tailored support.
A Disproportionate Burden
The burden of chronic respiratory disease is not evenly distributed across populations. Tanja Effing-Tijdhof, PhD, epidemiologist from the Flinders University, Adelaide, Australia, said 85% of the asthma burden and 96% of asthma deaths occur in LMICs. Similarly, for chronic obstructive pulmonary disease (COPD), the contribution of LMICs is over 85%. Despite this, the vast majority of medical literature and clinical guidelines on self-management comes from high-income countries.
This mismatch creates profound challenges:
Health literacy. Factors such as socioeconomic hardship and lower levels of education can significantly affect a patient’s ability to manage their condition and adhere to treatment. “A patient’s capability for self-management and adherence is directly influenced by their health literacy, which is why we must check and tailor every intervention,” Effing-Tijdhof said. She encouraged clinicians to carefully assess a patient’s understanding so that educational materials and management plans can be adapted appropriately.
Stigma. In certain parts of the world, a diagnosis of asthma can cause social isolation and discrimination within communities. Effing-Tijdhof shared a quote from a patient in India who said: “If I cook for my relations and neighbors, they’ll hesitate to eat….Those situations affect me very much.” This feeling of being perceived differently can lead to discomfort with a diagnosis, or even a reluctance to seek one, and can negatively affect treatment adherence, she explained.
Adherence. Self-management is influenced by cultural beliefs and a simple misunderstanding of the treatment plan, but is also influenced by poverty, which affects the affordability and accessibility of medications. “We need a combination of making drugs affordable and accessible, and that requires action from both pharmaceutical companies and governments,” Effing-Tijdhof said.
Active patient involvement in care is not always recognized or encouraged in LMICs, with some doctors thinking that self-management means being set aside, Effing-Tijdhof explained. Adding to this, she said, there is a lack of locally tailored clinical guidelines. Effing-Tijdhof said that only 22% of LMICs have their own national guidelines for chronic respiratory conditions, and these are often just “copy-paste” versions of global ones. “Ideally, you should have national guidelines that are adapted to local means and local resources,” she said.
This focus on high-income settings also skews research priorities. Because the vast majority of research happens in wealthy nations, potentially useful treatments for LMICs are overlooked. For instance, research on cheaper, albeit less effective, drugs, such as oral beta agonists like oral salbutamol or terbutaline, has been abandoned in the high-income world. However, these medications could still be highly beneficial in resource-limited settings where the alternative is no treatment at all.
Complex interventions developed in high-income settings are likely to fail in LMICs unless they are carefully adapted, Effing-Tijdhof added. For example, digital health programs could offer options, but access to technology like Wi-Fi can be unreliable in rural areas, and older patients may need support from family members who are not always available.
Identifying Treatable Traits
So how can clinicians begin to implement a more personalized strategy in their daily practice? Hani Syahida Salim, MD, PhD, family medicine specialist and senior lecturer at Universiti Putra Malaysia, Serdang, Malaysia, presented a practical framework for identifying key treatable traits. This approach shifts away from a one-size-fits-all disease label and toward a personalized plan tailored to an individual’s specific needs. “We need to make a shift from disease label to what we can treat,” she said.
She encouraged clinicians to assess pulmonary, extrapulmonary, and behavioral traits that can be modified. This involves looking at everything from a patient’s lung function and comorbidities, such as heart disease or diabetes, to behavioral factors, such as smoking and physical inactivity. For example, when a patient with both COPD and diabetes experiences worsening symptoms, the plan must account for both. If steroids are needed, the plan should include instructions for more frequent blood sugar monitoring. This integrated approach ensures that managing one condition does not inadvertently worsen another.
Taking the time to “rehearse” the self-management plan with the patient is also very important, she said. This includes using teach-back methods to ensure understanding, checking inhaler technique and adherence, and discussing the affordability of medications.
Partnership in Care
Effing-Tijdhof is convinced that a multifaceted approach is necessary to truly improve self-management worldwide. This involves creating widespread awareness of the disease burden, generating more evidence tailored to low- and middle-income settings, and training healthcare providers using locally relevant and affordable strategies. Only by addressing these foundational issues can a true partnership with patients be effectively established on a global scale, she said.
Self-management of chronic respiratory care is about codesigning a holistic plan that respects the patient’s life, addresses their unique challenges, and empowers them to live their best life possible. Ultimately, the goal is a shift in perspective, best summarized by Morgan herself: “It’s not just about treating Noelle’s asthma. It’s about looking at what’s going on as a person.”
Pinnock, Effing-Tijdhof, and Salim reported having no relevant financial relationships.
Manuela Callari is a freelance science journalist specializing in human and planetary health. Her work has been published in The Medical Republic, Rare Disease Advisor, New Scientist, The Guardian, MIT Technology Review, and others.
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