Aligning clinical care with consumer priorities: an adult cystic fibrosis centre experience of co-designing a model of care.

Cystic fibrosis (CF) is a multi-system genetic condition, and CF modulator therapies have transformed health outcomes promising improved longevity. Our aim was to co-design and implement a nested endocrine and metabolic model of care called CF Endocrine for adults with CF that aligned with consumer and healthcare provider priorities and addressed emerging service gaps in the post-modulator era. Using mixed-methods and implementation science methodologies, we designed and conducted surveys, audits and workshops to define service priorities and referral pathways and workflows. In total, 17% of adults attending our CF centre participated in the survey and reported lifestyle optimisation, weight management and diabetes prevention as leading consumer concerns. Four service arms were developed: (i) diabetes support, (ii) bone health, (iii) metabolic health and (iv) reproductive/sexual health. Providers showed strong alignment with consumer priorities and endorsed integration and feasibility of the new nested CF Endocrine service.