A conceptual framework to assess health-related quality of life and treatment effectiveness in headache disorders from the patient perspective.

Abstract

We aimed to elicit concepts that are important to patients with headache disorders (HD) to develop an HD-specific conceptual framework covering health-related quality of life (HRQL) and experiences of care. A qualitative health services research approach was used to inform in-depth, semi-structured interviews with English-speaking adults with HD. Purposive, maximal variation sampling was used to ensure representation of a diverse sample that varied by age, gender, and HD diagnosis and treatments. A semi-structured interview guide was used that required participants to describe the impact of their HD and treatments on their HRQL and their experience of care. Twenty participants (mean age 46±8.3; 75% women) were interviewed. The analysis led to developing a comprehensive conceptual framework that included two top-level domains (i.e., HRQL and experience of care). HRQL consisted of four subdomains: physical, psychological, social, and sexual wellbeing. Participants described their experience of care in terms of satisfaction with healthcare providers, treatment, and information. The framework, derived from concept elicitation interviews, provides a comprehensive basis for future research to develop a patient-reported outcome measure to address important gaps in existing measures by capturing HRQL concerns specific to HD.