The development of a self-management education programme for people with cystic fibrosis diabetes

Abstract

Background Cystic fibrosis diabetes (CFD) is the most common co-morbidity affecting nearly half of adults with cystic fibrosis over 30 years. Its presence has a significant impact on nutritional status, respiratory function, morbidity and mortality. Contrary to UK clinical guidelines there are currently no self-management education programmes for people with CFD. It is unclear what the barriers and facilitators are to help patients manage the additional demands of CFD, and specifically what people with CFD require to help them manage the potentially competing demands of blood glucose, nutritional status and lung function simultaneously. This study answers the research question “how can we best meet the self-management education requirements of people with CFD?” Methods This study, informed by the MRC Framework for developing and evaluating complex intervention, was conducted in two stages. Stage 1a - a systematic search of four electronic bibliographic data bases was carried out to identify qualitative studies exploring the experience of living with and managing CFD. Meta-ethnography was used to synthesise the findings. Stage 1b - a qualitative single occasion interview design, guided by the principles of IPA was conducted to provide insight into the self-management experiences of people with CFD and help identify skills and knowledge people with CFD require to self-manage their condition. Eight adults, from one CF centre participated. Stage two developed and reviewed the MAGIC – Managing Abnormal Glucose in Cystic Fibrosis) programme. A stakeholder development group, consisting of 9 healthcare professional and 7 people with CFD, was established to co-design the MAGIC programme. Over 11 months, 4 workshops focusing on the content, structure and design of the MAGIC programme took place. Cognitive interviews were conducted with ten people, not previously involved in its development, to review the face validity of the MAGIC programme. Results The meta-ethnography demonstrated that individual perception of CFD directly affects its management. Many challenges in self-managing CFD were identified in the IPA study, these included: trying to balance CF and CFD, not having sufficient knowledge to inform appropriate self-management decisions and being inadequately supported by healthcare professionals. These evidences, from stage one, and expertise from the stakeholder development group informed the development of the MAGIC programme. This was developed as an on-line self-management education programme, designed for 1:1 delivery at home. It consisted of a staged approach to learning built around four modules. Its theoretical underpinnings were informed by self-efficacy theory, the self-management framework for chronic illness and adult learning styles. The cognitive interviews identified technological problems, omissions, errors and comprehension difficulties in the MAGIC programme which were addressed before face validity was established. Conclusions This study developed the MAGIC programme, a unique self-management education programme for people with CFD. It is grounded in evidence generated from a qualitative systematic review, qualitative interviews and shared experiences of people with CFD and healthcare professional expert in the management of CFD. Recommendations for further research to assess the efficacy of the MAGIC programme include a feasibility study, a rare disease trial and the development of a core outcome set for CFD.

Date of Award	1 Feb 2020
Original language	English
Awarding Institution	King's College London
Supervisor	Jackie Sturt (Supervisor) & Susan Woodward (Supervisor)