Patient and parent perceptions of the diagnosis and management of cystic fibrosis-related diabetes

Background Cystic Fibrosis Related Diabetes (CFRD) is an increasingly common complication in CF. CFRD introduces an additional complex chronic disease to individuals already attending to demanding treatment regimens. An improved understanding of the reaction to and coping mechanisms surrounding CFRD may facilitate management of CFRD. Methods Semi-structured interviews completed by 10 children with CFRD, 10 adults with CFRD and 10 parents of children with CFRD in a single large CF Care Center were analyzed utilizing phenomenological analysis. Results Patients and families reported having limited knowledge of CFRD prior to diagnosis. CFRD was considered an extension of their underlying CF and successful management depended upon integration into existing routines. Conclusions Health care professionals caring for patients with CFRD should be informed of the specific challenges that arise in CFRD. Education in advance of CFRD diagnosis may facilitate management.