The evolving role of the patient for health management: from the insight to the co-creation of solutions

BACKGROUND: Breathlessness and exacerbations are the main causes for health status impairment in chronic obstructive pulmonary disease (COPD) patients, particularly in those with moderate-severe disease who, despite ongoing treatment, continue to be dyspnoic and/or exacerbated and may need therapy augmentation. Adherence to the treatment is still poor, and patients may experience issues using inhalers. In this context, a project was developed, involving patient with COPD on triple therapy, which entailed first collecting insights on the management of their disease and secondly developing solutions tailored to identified unmet needs.METHODS: COPD patients on triple therapy (inhaled corticosteroid [ICS], long-acting β2-adrenergic agonist [LABA], and long-acting muscarinic receptor antagonist [LAMA]) were selected by the referring specialist physician. A model of active listening was applied, aimed at collecting patients' insights and unmet needs. The company's medical experts participated in the meeting solely in listening mode.RESULTS: A total of 16 patient insight meetings were held, including altogether 102 patients with moderate-to-severe COPD on triple therapy. Around 600 insights were collected, and main themes were identified: 1) up to 95% of patients reported late diagnosis of COPD, frequently after hospitalization for severe exacerbations or for other pathologies; diagnosis was made almost exclusively by the pulmonologist; 2) patients reported profound impact of diseases on their life, with fear for exacerbations; and 3) transition to triple therapy brought additional clinical benefits. The importance of the simplification of the therapeutic regimen was also highlighted.CONCLUSIONS: Patients' insights are key to understand the full impact of COPD on their life. A late diagnosis is still reported by the participants, suggesting the importance of education and awareness for early disease detection. Escalation to triple therapy from previous treatment brought significant further benefit. The final goal was to develop solutions to improve the management of COPD, together with the healthcare professionals, company experts, and patients. A self-management tool was eventually identified aimed at supporting patients for self-monitoring and early recognition of clinical sign of deterioration, for a prompt referral to the specialist.