P-171 Exploring Needs During Transition from Adolescence to Adulthood in Young Adults with Inflammatory Bowel Disease

Adolescents with inflammatory bowel disease (IBD) are vulnerable to increased morbidity during transition from pediatric to adult health care. Successful transition requires appropriate transfer of care from a pediatric to an adult physician, as well as the transfer of responsibility from parent to patient. To accomplish this, the healthcare team must recognize and understand the attitudes, beliefs, relationships, and developmental maturity of this population. Current approaches to transition are based on expert opinion and limited research on the anticipated needs of adolescents and their families. The aim of this study was to identify the needs of young adults with IBD who transitioned from pediatric to adult care, and to compare them with those of young adults diagnosed during adulthood. A qualitative interpretive description approach was utilized. Participants were young adults aged 18–30 years recruited from the McMaster University Medical Centre adult IBD clinic between July 2012 and May 2013. Semi-structured interviews were conducted using an interview guide with questions probing participants to discuss their needs. Interviews were audiotaped, transcribed verbatim and coded using a constant comparative method. QSR NVivo10 was used to manage the data. Sample size was ascertained when no new additional themes were encountered. 21 young adults were interviewed, including 15 subjects diagnosed under 18 years of age and 6 subjects diagnosed in young adulthood. Among those diagnosed under 18 years of age, a range of transition needs were identified in the key areas of: psychosocial, informational, self-management, and daily living needs. Psychosocial needs were most commonly reported by the cohort with participants citing needs for support networks, to remove social barriers, and to cope with a wide range of emotions, such as anger, depression, sadness, and anxiety. Participants described how IBD made them feel self-conscious and many participants intentionally chose to isolate themselves from social settings. Young adults also reported various domains where they lacked information with the most common knowledge deficiencies around the impact of smoking, drugs, and alcohol use. Participants described a range of informational sources used, as well as a desire for information to be distributed in a client-centered manner. Financial barriers and participation in decision-making were noted as the primary needs in achieving independence. Several findings differed by age of diagnosis and severity of IBD. Subjects diagnosed as adults more often sought peer support groups and experienced more difficulties with healthcare access, financial concerns, and social isolation. Participants with less severe disease sought more client-centered care and those with more severe disease were more likely to describe social isolation. Transition is not a 1-time event and it is important for gastroenterologists to regularly reassess the needs of their patients during both pediatric and early adult care, particularly in the psychosocial, informational, self-management, and daily living domains. Future studies should confirm these needs across multiple centers and evaluate the impact of transition processes that incorporate these needs. Of note, psychosocial needs, have not been addressed in published IBD transition checklists and recommendations.

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