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6. Understanding the Role of Insurance in the Transition to Adult Care for Adolescents and Emerging Adults With Special Healthcare Needs (AEASHCN): A Qualitative Study

      Purpose

      Adolescents and Emerging Adults with Special Healthcare Needs (AEASHCN) must develop self-management skills in preparation for transition to adult-based care. However, AEASHCN are not being adequately prepared for transition, resulting in poor health outcomes for some AEASHCN during the transfer period. These poor health outcomes are greater for AEASHCN who are underinsured (public insurance or self-pay). The purpose of this study is to qualitatively explore the role of insurance in the preparation, transfer, and engagement stages of transition for AEASHCN from three subspeciality services at a large, urban children’s hospital.

      Methods

      This study included a convenience sample of participants from a cohort of 137 AEASHCN from the Gastroenterology, Rheumatology, and Renal clinical services who participated in a randomized control trial (RCT) designed to promote health self-management. Participants were 18-25 years of age. All genders and race/ethnic groups were included. One-to-one qualitative interviews were performed using open-ended, semi-structured questions to elicit the participant’s experience with preparation for and experience with transition from pediatric- to adult-based care. Interviews were conducted until saturation was reached. Interviews were audio-taped, transcribed, and verified for accuracy. Demographic characteristics were summarized using descriptive statistics. Qualitative responses were analyzed using the Framework Method. All authors reviewed a subset of the transcripts to generate initial codes for repeated phrases and topics, which were applied to transcripts until no new codes were identified. Transcripts were read and coded independently by pairs of coders. Discrepant codes were discussed until consensus was reached. Using Atlas.ti, the codes were indexed and sorted into larger subthemes and final themes. All coded quotes were reviewed by the coders, and overarching themes were agreed upon.

      Results

      Twenty-eight AEASHCN participated in the study. Preliminary results indicate that underinsured AEASHCN were less satisfied with adult-based care than privately insured AEASHCN. Regardless of insurance status, AEASHCN discussed difficulties with affording adult-based care. Many AEASHCN who were underinsured described suddenly aging out of Medicaid and did not know how to obtain alternative insurance. AEASHCN did not report having discussions about insurance during the preparation to transition. When asked how the transition process could be improved, AEASHCN wanted recommendations for adult providers or assistance with transferring medical records, but did not cite needing better insurance information.

      Conclusions

      Regardless of insurance status, AEASHCN were surprised by the complexity and limitations of their insurance, and did not understand the role of insurance in transition challenges. Both insured and underinsured AEASHCN experienced financial barriers to receiving adult-based care. Being underinsured resulted in AEASHCN forgoing or being unable to secure adequate adult-based care. Insurance was perceived by AEASHCN as outside of their influence or locus of control; therefore, discussions about insurance prior to transfer should be facilitated by and assigned to key members of the clinic staff, such as social workers and pediatric providers. Materials to help AEASHCN better understand insurance as it applies to their specific adult-based care would benefit from a developmental lens that focuses on AEASHCN motivations and empowerment to transition to adult-based care.

      Sources of Support

      Health Resources and Services Administration (R40MC30764).