170: Exploring Needs During Transition From Adolescence to Adulthood in Young Adults with Inflammatory Bowel Disease: A Qualitative Study

Adolescents with inflammatory bowel disease (IBD) are vulnerable to increased morbidity during transition from pediatric to adult health care. 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 at transition by examining the views of young adults who transitioned in the past and to see if those needs differed from IBD patients diagnosed as young adults. A qualitative interpretive description approach was utilized. Participants aged 18 to 30 years recruited from the McMaster University Medical Centre 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 established when no new additional themes were encountered. Twenty-one young adults were interviewed: 15 subjects diagnosed <18 years of age and six subjects diagnosed as young adults. Among those diagnosed <18, transition needs were identified in the key areas of psychosocial, informational, self management, and daily living needs. Psychosocial needs were most commonly reported with subjects citing needs for support networks, removing social barriers, and coping with anger, depression, sadness, and anxiety. Subjects detailed how IBD led to intentional self-isolation from social settings. A paucity of information was reported on the impact of smoking, drugs, and alcohol use. Overcoming financial barriers and participation in decision-making were noted as the primary signs of achieving independence. 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. We report the first study in the transition literature of already transitioned individuals' needs during the transition process. Individuals with IBD who have undergone transition focus most on psychosocial and financial needs rather than self management of their chronic illness. This finding is likely generalizable to most adolescents and young adults with chronic life-long diseases. Psychosocial and financial readiness are not presently assessed in existing transition and self-management tools, and may need to incorporate these areas to more effectively measure the success of transition interventions.