Evolving role of patient education and engagement in COPD management

The traditional medical model of the doctor-patient relationship presents a situation in which a patient comes to an expert, a medical practitioner, for a consultation and supplementation of their knowledge and understanding (Parsons, Reference Parsons1951). Many traditional care models remain rooted in a paternalistic approach, often overlooking the patient’s own expertise, preferences, and capacity for self-management (Harris et al., Reference Harris, Smith and Veale2008; Roberts et al., Reference Roberts, Kidd, Kirkwood, Cross and Partridge2018). However, this tends to be poorly suited for patients with chronic diseases, who often have a great level of expertise and information (Kelly, Reference Kelly2015).

The limitations of paternalistic models become starkly evident when viewed through the lens of the WHO’s definition, which highlights empowerment as a foundation for equitable and people-centred care. In this context, COPD education which relies on hierarchical relationships can undermine patients’ capacity for self-management and limit their involvement in decision-making. Nevertheless, encouraging progress has been made in recent years, with the landscape of COPD management shifting and moving beyond a paternalistic model towards one that values patient education, engagement, and partnership. A growing body of evidence recognized that effective self-management of COPD is not achieved through information delivery alone, but through active collaboration, rapport-building, and shared decision-making between patients and healthcare providers (Benzo et al., Reference Benzo, Kelpin, Werneburg, Hoult, Clark, Novotny and Benzo2022; Blackstock et al., Reference Blackstock, Lareau, Nici, ZuWallack, Bourbeau, Buckley, Durning, Effing, Egbert, Goldstein, Kelly, Lee, Meek and Singh2018). Without this foundation, even well-intentioned education efforts may fall short, particularly when psychosocial challenges go unacknowledged.

Accordingly, the WHO stresses that empowerment ought to move decisively beyond the paternalistic model of merely instructing patients. Instead, it requires creating the conditions for individuals to set their own health priorities, co-develop their care plans and have a real say in decisions about their treatment. This reorientation challenges entrenched hierarchical power dynamics in healthcare and represents a key step to improving adherence, resilience, and lasting health gains.

Gaps in patient education and the role of nurses

Low health literacy is connected with lower treatment adherence; therefore, proper education of people with COPD and their carers is crucial as it may facilitate their engagement in care, resulting in improved coping strategies and treatment adherence (Gonçalves et al., Reference Gonçalves, Harkess-Murphy, Cund, Sime and Lusher2025a; Muellers et al., Reference Muellers, Li, Rachel, Wolf, Federman and Wisnivesky2019; Muijsenberg et al., Reference Muijsenberg, Houben-Wilke, Spruit and Janssen2024). Nevertheless, patient education remains uneven in both content and delivery. While areas such as smoking cessation, medication use, and exercise are often well covered, psychosocial concerns, such as stress, fatigue, depression, social life, and end-of-life planning are frequently overlooked (Siltanen et al., Reference Siltanen, Aine, Huhtala, Kaunonen, Vasankari and Paavilainen2020). Therefore, the psychosocial aspects of patients’ education need to be addressed more thoroughly.

The way people with COPD perceive their disease helps them adjust self-management in order to improve illness outcomes (Kaptein et al., Reference Kaptein, Fischer and Scharloo2014). Effective communication and understanding of the diagnosis are essential for patient engagement (Kwame and Petrucka, Reference Kwame and Petrucka2021; Roberts et al., Reference Roberts, Ghiassi and Partridge2008, Sharkiya, Reference Sharkiya2023). Thus, the quality of information provided to the patients is vital. Importantly, the type of healthcare professional involved in patient education influences both the focus and quality of information provided. Siltanen et al. (Reference Siltanen, Aine, Huhtala, Kaunonen, Vasankari and Paavilainen2020) showed that specialist medical workers provided education more systematically compared to primary care professionals. Physicians and nurses covered different areas of education, with doctors emphasizing the diagnostic procedures and treatment of COPD and nurses focusing on practical management of COPD such as inhalation technique, mouth care, and nutrition. Nurses, especially in primary care, were more active than doctors regarding psychosocial aspects of education, such as well-being, fatigue, stress, anxiety, and depression management. However, despite their importance, support from community nurses is often reported as insufficient, with patients noting infrequent visits and identifying this as an area in need of improvement. Furthermore, a survey of COPD specialist nurses in the community, found that there is little service delivery and a mismatch between the effectiveness of the service and its provision (Candy et al., Reference Candy, Taylor, Ramsay, Esmond, Griffiths and Bryar2007). Therefore, given the critical role of nurses in providing holistic education and psychosocial support, these services seem to require restructuring in order to be more available to the patients and meet their needs.

Role of dialogue in fostering self-management

In chronic disease management, active engagement can bolster self-management skills and improved quality of life (Johnson et al., Reference Johnson, Zimmerman, Welch, Hertzog, Pozehl and Plumb2016). People with COPD who lack clean information about their prognosis may hold unrealistic beliefs or misunderstand the seriousness of their condition, undermining their ability to plan, cope, and self-manage (Gauronskaite et al., Reference Gauronskaite, Zemnickiene, Liustrickyte, Poceviciute, Danila and Kibarskyte2016). Conversely, in a study with people with COPD, those who received clear communication from their pulmonologists and nurses exhibited a strong understanding of their condition and treatment, allowing them to feel more in control of their care, whereas those who perceived a lack of dialogue and information from healthcare professionals struggled with managing their treatment effectively (Gonçalves et al., Reference Gonçalves, Lusher, Cund, Sime and Harkess-Murphy2025b). Hence, constructive collaboration with healthcare providers may help improve patients’ empowerment, build their confidence, and support their sense of autonomy.

Yet, even among engaged patients, success is not guaranteed. Bucknall et al. (Reference Bucknall, Miller, Lloyd, Cleland, McCluskey, Cotton, Stevenson, Cotton and McConnachie2012) revealed that certain demographics, particularly older adults living alone, struggled more with self-management. This suggests the need for tailored interventions and enhanced support for vulnerable subgroups. While frameworks for patient activation exist, there is limited evidence on how best to tailor COPD self-management strategies to different populations (Yadav et al., Reference Yadav, Hosseinzadeh and Baral2018).