A prospective mixed-methods pilot study of a novel group structured education programme for adults with cystic fibrosis diabetes

Abstract

Background: Cystic fibrosis diabetes (CFD) is associated with increased morbidity and mortality in adults with cystic fibrosis (CF). In addition, poor glycaemic control can result in microvascular complications. Group educational programmes for people with type 1 and 2 diabetes have been shown to improve diabetes outcomes. The national guidelines recommend that people with CFD should receive education regarding diabetes; however, specific CFD group education programmes have not been evaluated.

Aims: This study aimed to test whether this novel diabetes contents and intervention for CFD based on the Beta Cell Education Resources for Training in Insulin and Eating (BERTIE) type 1 diabetes education programme was beneficial for adults with CFD. The adapted course, Improved Diabetes Education in Adults with Cystic Fibrosis (IDEA-CF ), incorporated CFD-specific topics and was delivered virtually via videoconference group sessions to facilitate peer learning and support without the risk of cross-infection. A pilot study was conducted utilising this novel IDEA-CF virtual structured program to ensure that the intervention met the patients’ educational needs.

Methods: This randomised controlled multimethods pilot study recruited adults with CFD taking insulin therapy and cared for by a large regional CF centre. After providing written informed consent, the participants completed all the study forms and questionnaires before randomisation. Randomisation was performed using a computerised randomisation system that allocated adults with CFD into the intervention group (IDEA-CF) or routine care group for the 12-week study period. Participants who were randomised into the routine group continued to receive one-on-one education as before. Using the CF quality-of-life (QoL) questionnaire (revised Cystic Fibrosis Questionnaire [CFQ-R]), outcomes were measured at baseline and 12-week visits in both groups. The participants in the intervention group were asked to take part in a semistructured qualitative interview after the completion of the intervention, which was performed by a CF psychologist.

Results: A total of 20 participants were recruited, with 18 completing the intervention and study follow-up visits. In the CFQ-R domains, physical functioning, emotional functioning, eating, role functioning and respiratory symptoms were significantly improved in the intervention group compared with the routine care group. The IDEA-CF Knowledge Assessing Questionnaire (IDEA-CF KAQ) scores in the intervention group improved compared with the IDEA-CF KAQ scores in the control group, suggesting that education improves knowledge and understanding. The IDEA-CF structured virtual group education group was well received, with participants valuing the educational content and the ability to interact with each other and to learn from their peers’ experiences constructively.

Conclusions: Our study demonstrated that the IDEA-CF education programme improved health-related QoL and diabetes knowledge, as evidenced by the results of the IDEA-CF KAQ. The participants valued the educational contents of the programme and reported a positive experience interacting with their peers.