Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.
Agnes KocherMichael SimonAndrew A DwyerCatherine BlatterJasmina BogdanovicPatrizia Künzler-HeulePeter M VilligerDiana DanOliver DistlerUlrich A WalkerDunja NiccaPublished in: Orphanet journal of rare diseases (2023)
The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling-aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs.