An integrated analysis of the impact of systemic sclerosis on the quality of life of patients and caregivers, drawing directly from their lived experience.
307 respondents · NGT · Qualitative interviews
CHALLENGE
The impact of systemic sclerosis on the quality of life of patients and caregivers was poorly documented from their direct perspective, making it difficult to inform care policies.
APPROACH
A three-phase mixed-methods programme: an online quantitative survey (260 patients, 47 caregivers, CHERRIES-compliant); a multidisciplinary NGT panel (clinicians, psychologist, health economist, patient, caregiver, patient association); and in-depth qualitative interviews conducted by psychologists.
OUTPUT
A peer-reviewed supplement comprising three articles published in a scientific journal, featuring prioritised and actionable recommendations for institutions and policymakers.
OUTCOME
The first integrated systematic analysis — quantitative, qualitative and expert-based — of the impact of systemic sclerosis on the daily lives of Italian patients and caregivers. Now a reference for care policies.