Missing family history: Physicians unprepared to care for adult adoptees

Family medical history questionnaire © JohnKwan - stock.adobe.com

A recent qualitative study that examined the experiences of primary care physicians (PCPs) in caring for adult adoptees with limited family medical history (LFMH) revealed substantial gaps in relevant training and resources. Researchers interviewed 23 PCPs from Rhode Island and Minnesota—mostly academic family medicine physicians with decades of practice—and determined that none had received sufficient education to address the lifelong needs of adult adoptees with LFMH.

“Better medical education and guidance are needed regarding adult adopted patients with LFMH, especially regarding inclusive family medical history taking, adoption-competent medical health care, appropriate screening and growing interest in genetic testing,” the authors of the study, which is published in The Annals of Family Medicine, wrote.

Training gaps

Using a critical adoption studies (CAS) framework, the study explored how PCPs gather family medical history, manage preventive screening and counsel on genetic testing, mental health and trauma.

Although nearly all interviewees had encountered adoptees during their careers—adoptees made up roughly 5% of their patient panels—many physicians admitted to relying on personal experience rather than formal education when addressing adoption-related issues.

Most respondents reported receiving little to no education specifically addressing adult adoptees with LFMH. While some had attended isolated lectures or read articles on adoption in the pediatric context, there was a clear consensus that guidelines for adult care, particularly for preventive screening and genetic testing, are sorely lacking.

Some physicians categorized adoptees as “average risk” for screening, while others feared that this might delay diagnosis for patients missing complete family histories.

Traditionally, adoption has been viewed solely as a pediatric issue—the American Academy of Pediatrics is the only medical society to address adoption, according to the study. Thus, the few responding physicians who were trained on adoption were only trained to care for adopted children. Despite this, research indicates that adoptive identities become increasingly salient in early adulthood.

Mental health

The study also uncovered challenges in addressing mental health. Many physicians recognized that adoptees might face increased risks for depression, anxiety and post-traumatic stress disorder (PTSD), yet few were aware of or could refer patients to mental health professionals with expertise in adoption-related issues. Respondents noted a disconnect between understanding the potential impact of adoption-related trauma and having the resources to manage it.

Notably, one-third of responding physicians believed adoption to be “inherently traumatic.” All of the respondents who felt this way had personal ties to adoption, with many of them adoptive parents themselves.

Family history

Another significant concern was the imprecision in collecting family medical histories. Physicians frequently used vague language, such as “your family,” which could lead to miscommunications or inadvertently trigger feelings of loss or invalidation among some adoptees.

“I am guilty of not specifying [biological family],” one PCP, who is also an adoptive parent, said in their interview. “It’s possible I could be getting family medical history from relatives who are not biologically related or not picking up on if a patient doesn’t know, and they just say ‘no.’”

The study’s authors conclude that improve medical education and clearer clinical guidelines are urgently needed to address the full spectrum of health care challenges for adult adoptees with LFMH. They recommend enhanced training in inclusive family history taking, adoption-competent mental health care and a nuanced approach to genetic testing.

Researchers noted that the true extent of knowledge gaps regarding adoption is likely even greater than the study suggests, as PCPs with personal ties to adoption—who are likely more knowledgeable about adoption—were oversampled. For this reason, they call for future studies to incorporate perspectives from PCPs without personal ties to adoption, in addition to medical trainees, advanced practice providers and input from adult adoptees themselves.

“Further work should explore the views of adopted adult patients with LFMH on primary care and investigate cost-benefit analyses of genetic testing and its applicability toward personalizing care for this patient population,” they added.