Abstract
Background
Around 25% of patients with inflammatory bowel disease (IBD) are diagnosed before the age of 20, meaning transition from paediatric to adult healthcare is inevitable for some. Good transition is important to maintain quality of care, and poor transition can result in adverse outcomes such as clinic and medication non-adherence. Certain skills are required in order for someone to be ready to transition, and the aim of this study was to identify modifiable and non-modifiable factors affecting the development of these skills in young people with IBD.
Methods
This review was registered on the PROSERO database (CRD42019152272) and conducted in line with PRISMA guidelines. Studies were included if they (1) explored factors affecting the acquisition of transition readiness skills in IBD patients 2) were written in English (3) were published since 1999. The databases MEDLINE, CINAHL and PsychINFO were searched from September - October 2019. Bias was assessed using the Quality in Prognostic Studies tool.
Results
Searches identified 822 papers and 27 full texts were retrieved. Sixteen papers were included in the final review, reporting on 1770 patients ranging from 10–29 years of age. Fourteen studies were cross-sectional and two longitudinal. Six assessed transition readiness, five self-management, two disease knowledge, one medication knowledge, one health literacy, and one both disease knowledge and self-management. Modifiable factors found were increased provider-communication about transition, transition duration, and health care satisfaction. Participant self-efficacy was found to be significant for three studies, and increased parent autonomy granting was related to higher disease knowledge in one study. Non-modifiable factors identified were age, sex, socioeconomic score, participant educational level and ethnicity. Nine studies showed increased age as a positive prognostic factor, and two additional papers found an effect for certain domains assessed. Four studies showed higher scores for females, and one study demonstrated higher self-rated self-efficacy scores for males. Disease-related non-modifiable factors identified were IBD family history, age at diagnosis, and absence from school.
Conclusion
This study identified five potentially modifiable factors. Strategies or interventions to address these in the IBD population transitioning to adult care might lead to improved experience and outcomes. This review also identified eight non-modifiable factors. This may allow healthcare and allied professionals to identify those at an increased risk of not developing the necessary competencies for transition and adapting the way in which they approach transition for each individual.
Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial
