O3221: The Unmet Healthcare Needs of Patients Adopted in Childhood: What Pediatricians Need to Know

Background: Existing literature and training on caring for adopted patients is limited to immediately prior to and following adoption. Yet, a handful of narratives describe adopted individuals feeling unsupported by their clinical providers who are ill equipped to address the unique needs of this population as they age. In this exploratory study, we assess the healthcare challenges faced by adult patients adopted in childhood and the perceived impact on the patient-provider relationship.

Methods: Between June 2023 to January 2024, a cross sectional, mixed-methods survey was administered to US adult adoptees. The survey contained 40 multiple choice questions focused on participant demographics, adoption identity, access to healthcare, access to family medical history, perceived priorities in medical care, presence or lack of adoption-inclusive healthcare practices, and perceived discrimination in the medical setting as it relates to adoptee status. Three open response questions were included to allow participants to expand upon or add perceived positive or negative experiences in healthcare related to adoption.

Results: 205 participants were included in the study. An overwhelming majority of participants reported that their providers’ demonstrated adoption knowledge gaps, including lack of insight regarding the impact of limited family medical history contributing to negative health outcomes. In particular, most participants agreed it is important that their provider demonstrates an understanding of the unique medical concerns of adoptees (93.2%, n=190), makes them feel comfortable discussing adoption-related concerns (92.7%, n=190), and offers early preventative screening (94.1%, n=193) or genetic testing (91.2%, n=187). Less than half of the participants indicated that their current provider addresses these needs. Furthermore, more than half of participants indicated experiencing discrimination in the medical setting related to adoptee status, including providers or staff making inaccurate or insensitive comments, having their adoption-related concerns ignored or dismissed, and feeling uncomfortable, unwelcome, or unsupported by their providers. Resultantly, 36.1% (n=74) have postponed or avoided care and 43.4% (n=89) have changed providers.

Conclusion: In one of the first studies to survey adult patients adopted in childhood about their healthcare experience, we demonstrate that adoptees perceive providers’ lack of knowledge of how to address the health implications of adoption as detrimental to their care and undermines the patient-provider relationship. Many respondents describe a desire to gain an understanding of their medical risks in the setting of limited family medical history, specifically through genetic testing and when considering family planning. Most participants felt their providers are unprepared and uncomfortable having these discussions, resulting in participants postponing or avoiding care. Providers should anticipate and address this patient population’s unique needs, recognizing the lifelong impact on the health of an adopted person/or individual who is adopted.