The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

Abstract Background The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working, and interpersonal. Aims In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement, the psychological, social care and welfare needs of people affected by IBD across the lifecycle. Methods Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo. Results We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detection the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style, support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect, and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kinds of challenges across the life cycle. Conclusions The literature shows the relevance of organizing a flexible, personalized health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.