Co-designing a model of care for adults living with Cystic Fibrosis
Related Diabetes
Abstract
Background Cystic fibrosis (CF) related diabetes affects up to
half of all adults with CF and is associated with higher morbidity and
mortality. Our aim is to co-design an ideal model of care that
integrates diabetes technology and better meets the needs of adults
living with the condition to improve attendance, engagement, service
satisfaction and clinical outcomes. Methods Using qualitative
research methods, we evaluated disease perceptions, barriers and
enablers to optimal CF-related diabetes management and service delivery.
Integration of continuous glucose monitoring (CGM) was also explored. An
initial broad purposive consumer survey was followed by focus groups
with end-users. Grounded theory approach was utilized with major
problem-areas identified then explored, coded and grouped into
requisites for an ‘ideal model of care’ for adults living with
CF-related diabetes. Results Two key themes emerged i) CGM was
acceptable for use in adults with CF-related diabetes with many
perceived benefits and should be integrated into the model of care, ii)
an ideal model of care consisted of a dual-specialty service co-led by
endocrinology and CF physicians and supported by diabetes nurse educator
and CF dietitian with a goal to provide consistent and personalized
diabetes management. Barriers to optimizing glycaemic control included
diet, finger-prick testing, reduced access to CGM and pulmonary
exacerbations. End-user feedback on CGM was overwhelmingly positive with
regards to user operability. CGM was also identified as a tool that
could be used to engage, educate and empower adults living with
CF-related diabetes and facilitate constructive and personalized
clinical decision-making by healthcare providers. Conclusion
For adults living with CF, a diagnosis of diabetes is associated with
increased treatment burden. End-users agreed CGM had many benefits and
should be integrated into an ‘ideal model of care’ for CF-related
diabetes that was co-led by endocrinology services integrated within a
pre-existing CF service.