Background: Eating disorders (EDs) commonly develop in adolescence and can be a chronic condition. Once patients reach the age when it is no longer permitted or appropriate for them to be seen in a children's healthcare setting, they will need to transition into adult-focused care. This transition period can be challenging, with increased risks of negative health outcomes and disruptions in care. Appropriate educational resources could be an effective support for patients during this transition. Our objectives were to engage patients about the value of developing educational supports and determine how these supports should be structured to be most useful to young adults with EDs.
Methods: Patients who had transitioned out of a hospital-based ED program between 2017 and 2020 were invited to participate in a semi-structured interview. Data were analyzed using thematic analysis and qualitative description.
Results: Six young adults (5 females and 1 male) with EDs were interviewed. All participants thought it would be helpful to have an educational resource. Three main themes and seven subthemes were identified. Themes identified related to the unique challenges of transition for ED patients given the age of onset and cycle of symptoms; issues in adult care related to comorbidities and new level of autonomy; and the value of educational resources as both a connection tool and a benchmark. Participants also thought it would be useful to include in any educational resource a summary of their previous treatments, information regarding the transition process, a list of main healthcare providers they saw for their ED, a description of the differences and expectations of the adult system, a list of their follow up appointments, and a list of community and emergency mental health resources.
Conclusions: Participants said that educational supports can play a useful role for young adults with EDs during their transition into adult care. They also provided valuable insights into the desired contents of such supports and expanded on the roles that educational resources could serve for ED patients.
Keywords: Adolescents; Eating disorders; Patient educational supports; Qualitative research; Thematic analysis; Transition; User perspectives; Young adults.
Most adolescents who have an eating disorder will reach an age when it is no longer appropriate for them to receive care in a children’s health program. They will then need to transition to an adult-focused program. This transition period can be challenging, with increased risks of negative health outcomes and disruptions in care. One approach for better supporting patients during transition is through the development of appropriate educational resources. Before developing these resources, it is important to hear from patients about how they should be structured to be as useful as possible. We interviewed six patients who had recently transitioned out of a pediatric eating disorder program about the value of an educational transition resource and what should be included in it. Patients identified several unique transition issues for young adults with eating disorders. We identified valuable insights and seven key themes from these interviews. While all patients recognized the value of educational resources, rather than being just a static source of information, they envisioned a resource that could also be a dynamic record of their previous care and a tool for engaging with their new adult-focused health care providers.
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