By Jocelyn Lebow, PhD, LP
I am going to be honest. As a new parent (or even as a slightly not-that-new parent) I have called my pediatrician with panicked questions on pretty much every topic even loosely pertaining to my child. I have unabashedly picked my doctor’s brain on everything from fevers and rashes to how to pick a daycare. I’ve asked her about my child’s health, her safety, and, though perhaps not in not so many words, for validation that I am not screwing up as a mom. And I did all this without thinking twice because, from the very beginning, it was clear to me that this provider was there to be a member of my child’s team- in health and, more importantly, in sickness.
So why is it, when we are preparing for the fight against a relentless and life-threatening eating disorder, that pediatric, family medicine, and other primary care providers are often an afterthought? While we all have heard (and maybe lived) the horror stories of providers who waved off dramatic weight loss (or worse, commended the patient for making “healthy” changes), downplayed body image concerns as typical teenage behavior, or failed to follow-up on concerning physical changes, we also all know how invaluable our primary care provider can be as a resource for how to keep our kids healthy. Research suggests that the majority of individuals present first to primary care with concerns about their child’s eating.1 In fact, many people (approximately 80% according to one study)2 report that the only care they received during their eating disorder came in the primary care setting. Because of this, primary care has unique potential for eating disorder intervention that could impact these illnesses early, before symptoms get entrenched.
While many eating disorders are too severe or complex to be treated outside a specialized facility, for many more patients- especially those in the early phases of the illness- primary care providers might be uniquely qualified to address their symptoms. After all, they have the skills. The average primary care provider spends most of their day coaching caregivers to support their children in making difficult behavior changes (e.g. using inhalators, taking medications, receiving vaccinations). Many primary care providers have longstanding relationships with families, and, as such, have earned their position as a trusted medical advisor. This unique relationship allows providers to coach families through the difficult process of supporting weight restoration and eating.
By failing to consider primary care as a possible entry point for eating disorder intervention we are missing a crucial weapon in our fight against these diseases. This is particularly important when we consider just how difficult it is for the average family to find high quality eating disorder treatment. There are well-established shortages of mental health providers in general,3 with only an estimated 5% of mental health providers reporting that they are willing to treat eating disorders.4 This number drops even further if you’re looking for a specific modality, such as Family-Based Treatment (FBT). At present, there are less than 60 certified FBT providers in the United States,5 most located in a few cities, leaving wide swathes of the country without any providers of this first-line treatment.
Our team, which includes clinical psychologists, pediatric and family primary care providers, has developed an adaptation of FBT for delivery by primary care providers (Family-Based Treatment for Primary Care, or FBT-PC). We designed this intervention to fit the primary care setting- making changes such as eliminating the family meal, shortening sessions, and developing a role for trained nursing staff to support providers. Most of these changes are similar to those used in other adaptations of FBT, such as Parent-Focused Treatment, which have been shown to be as effective as standard FBT.6
We have piloted FBT-PC in our clinic, where we have no eating disorder treatment program. Although we are affiliated with a major medical center, our patients and their families must often travel more than 90 miles to receive eating disorder care. This is an unacceptable barrier that undoubtedly leads to delays in care and to poorer outcomes.
At present, we’ve completed two small studies to establish proof-of-concept and feasibility of FBT-PC. First, we looked at 3 months of data for 15 adolescents with a restrictive eating disorder (anorexia nervosa or other specified feeding and eating disorder characterized by dietary restriction and weight loss). After 3 months, 13 patients remained in treatment, with one family dropping out and one having to be referred to a higher level of care. Over the course of 3 months, families attended an average of 9.2 sessions and experienced a significant increase in BMI percentile from 39.1 to 54.8, at a rate of .56 kg per week, which is comparable to that recommended in standard FBT. This suggests that the model is feasible for implementation in a primary care setting.7
We also examined a sample of 15 adolescents with restrictive eating disorders who completed a course of FBT-PC (including those who successfully finished treatment, those lost to follow-up, and those referred to a higher level of care). At the end of treatment, the group showed large improvements in BMI percentile and decreases in weight suppression. In total, 80% of the FBT-PC cohort achieved >95% expected body weight (based on historical growth curves) and 67% no longer met DSM-5 criteria for an eating disorder. In comparison to a cohort of 15 patients receiving standard FBT from the same setting, there were no significant differences in number of drop-outs and referrals to more intensive treatment. These findings suggest that primary care providers have potential to improve weight and clinical status in children and adolescents with restrictive eating disorders.8
The FBT-PC model is still new- and requires more testing to fully establish its effectiveness as compared to gold standard treatment. However, our data so far support the intervention’s feasibility and proof-of concept. This means that, if FBT-PC can continue to stand up to rigorous testing, we may have a model that can be used to catch and treat these deadly illnesses earlier and minimize undue suffering of young patients and their families, to help them fully recover and thrive.
- Hoek HW. Incidence, prevalence and mortality of anorexia nervosa and other eating disorders. Curr Opin Psychiatr. 2006; 19(4):389-394.
- Mond JM, Hay PJ, Rodgers B, Owen C. Health service utilization for eating disorders: Findings from a community-based study. Int J Eat Disord. 2007; 40:399-408.
- National Alliance on Mental Illness. The doctor is out: Continued disparities in access to mental and physical health care. Arlington, VA: National Alliance on Mental Illness; 2017.
- Lebow J, Sim L, Whiteside S. Understanding the provision of evidence-based treatment among child and adolescent therapists in the community. Manuscript in preparation.
- Training Institute for Child and Adolescent Eating Disorders. Certified therapist’s webpage. Train2treat4ed.com/certified-therapist-list/. Accessed April 2, 2021.
- Le Grange D, Hughes E, Court A, Yeo M, Crosby R, Sawyer S. Randomized clinical trial of Parent-Focused Treatment and Family-Based Treatment for adolescent anorexia nervosa. J Am Acad Child Adolesc Psychiatry. 2016; 55(8):683-692.
- Lebow J, Gewirtz O’Brien J, Mattke A et al. A primary care modification of Family-Based Treatment for adolescent restrictive eating disorders. Eat Disord J Treat Prev. 2019.
- Lebow J, Mattke A, Narr C, et al., Can adolescents with eating disorders be treated in primary care? A restrospective clinical cohort study. J Eat Disord. 2021; 9(55).