Twelve pulmonary arterial hypertension patients followed at the Fuwai Central China Cardiovascular Hospital in Zhengzhou City in the Henan Province, China, were interviewed to understand their self-management challenges. The findings were published in the Patient Preference and Adherence Journal on January 17, 2026, and reveal significant barriers to effective disease self-management across two main categories.
Individual-level barriers included delayed diagnosis due to non-specific early symptoms being overlooked or attributed to other conditions. Patients struggled with insufficient structured professional guidance about their disease and medications, often relying on self-education through online resources and peer support groups. The overwhelming financial burden emerged as a critical barrier, with medication costs exceeding 20,000 yuan monthly for some patients even after partial reimbursement. This led many to take medications irregularly or discontinue treatment entirely, particularly when balancing family financial responsibilities and loss of income due to inability to work.
Contextual challenges centered on the unpredictable nature of disease progression, which left patients feeling helpless as symptoms could worsen suddenly and severely impact daily functioning. While some patients benefited from family and organizational support, others—particularly those in rural areas—lacked access to both family assistance and awareness of available support organizations. Poor medication accessibility in non-metropolitan regions forced patients to navigate complex procurement processes across multiple locations. The COVID-19 pandemic severely exacerbated these challenges by disrupting medication access and healthcare services, with some patients completely stopping targeted therapies due to lockdowns and stock shortages.
Conclusions: The findings underscore the need for comprehensive interventions including structured patient education, psychological support, family involvement in care planning, expanded peer support networks, policy reforms to improve drug affordability and accessibility, and resilient healthcare systems capable of maintaining care continuity during public health emergencies.
Limitations: The small sample size could potentially restrict the generalizability of the findings, also as the majority of the participants were hospitalized, which could mean that their physical and mental problems might have been more severe.
Citation
Cai J, Zhao N, Gao Y, Pan L, Yang Q. Dilemmas of Self-Management in Patients with Pulmonary Arterial Hypertension: A Descriptive Phenomenological Study. Patient Preference and Adherence. 2026;20:1-9 https://doi.org/10.2147/PPA.S563550
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