Discussion
Our findings demonstrate that screening for eating disorders is feasible in oncology clinics – as over 150 patients were successfully screened in only a 9-month period. With a 6.75% positive screening rate, our findings are also consistent with prevalence data in the general population and over two times higher than the general AYA population when compared to the NIH’s prevalence data - confirming that oncology survivors are at a higher risk and indeed should be screened for eating disorders. Since early recognition is key for the treatment of eating disorders and limiting the long-term morbidity, it is especially important to screen oncology patients, particularly if they are not regularly seeing their primary care physician.1,3 The SCOFF questionnaire is an accessible, feasible, and time-efficient tool for patients to use and for providers to interpret. We found that it was simple for the clinic medical assistants to pass out the questionnaire to the designated patients. This screening process was widely accepted by both the adolescent patients as well as the oncology providers.
It is well documented that adolescents with childhood trauma and adverse childhood events, including coping with a chronic disease, are at increased risk of developing an eating disorder.4Adolescents with chronic health conditions, including oncology patients, experience a loss of normalcy and autonomy during a time when they are seeking independence and developing a sense-of-self. Fixation on eating and weight loss lends a sense of structure, predictability, and security.6 Indeed, this has been reported in other adolescents with chronic conditions, such as systemic lupus erythematosus (SLE), diabetes mellitus, and chronic hypertension.5,7,8 One review of patients with juvenile SLE patients demonstrated an association between SLE and anorexia nervosa. In this review, it was suggested that these patients developed anorexia due to the chronic use of steroids and the subsequent body-image issues secondary to steroid-related body changes.7 They also develop eating disorders because of an emphasis on weight and nutrition, as both these factors can impact prognosis, with adhering to a stricter diet ultimately having the opposite effect and leading to an eating disorder.7
Adolescent patients with diabetes mellitus are at 2-3 times higher risk than the general population to develop an eating disorder, with a prevalence anywhere between 15-40%.8 This is the case as patients with diabetes must adhere to a strict medication regimen that emphasizes portion and weight control, leading to food preoccupation.8,9 Underdosing or skipping insulin doses entirely is commonly used as a form of weight loss among these patients, as this both helps patient lose weight and gives them a sense of independence and control over their treatment.8,9The same has been noted in adolescent patients with chronic hypertension due to the emphasis on lifestyle modification, including diet and exercise.5
The above supports our hypothesis that AYA oncology patients are at high risk for the development of eating disorders given several similar characteristics with patients with SLE, diabetes, and chronic hypertension – including treatment with weight-altering therapies, emphasis on weight and nutrition, stringent treatment regimens, and significant stress - and therefore should be routinely screened.
Though the NCI has designated AYA patients as those 15 years and over and the AAP defines adolescence as beginning at 11 years, we elected to starting the screening age at 13 years. Starting at the onset of the teenage years seemed reasonable as we did not want to miss patients under 15 – they are certainly at risk – but did not think starting at 11 was appropriate as our and adolescent medicine team, who was evaluating patients with a positive screening, does not accept patients as young as 11.
One other consideration when implementing screening for eating disorders in this patient population is how to respond to a positive result. Our institution is fortunate to have a dedicated adolescent medicine clinic with specific expertise in managing eating disorders. Other facilities without an adolescent medicine team should find other resources and/or the oncology team will need to be comfortable with subsequent follow up, workup, and management for potential eating disorders. In this situation, oncology providers can refer to social work for resources or refer the patient back to their general pediatrician.
An important limitation to this study to note is that AYA oncology patients receiving active therapy were excluded. There is currently a lack of data regarding the prevalence of eating disorders in the AYA oncology population. This initiative only screened AYA oncology survivors who were not receiving active therapy. We also excluded patients who were currently receiving steroids as these are known to affect appetite and body habitus. AYA patients receiving active chemotherapy have several factors that could affect their weight and appetite – nausea with chemotherapy, a change in taste, medication side effects resulting in weight gain/loss - and are therefore tricky to screen for eating disorders as their answers on questionnaires may be influenced by from their treatment.
An important next step in preventing eating disorders in AYA cancer patients on active therapy is to develop an appropriate screener that accounts for these confounding factors. Adequate nutrition is a necessity for patients who are actively receiving chemotherapy as this allows for a better tolerance for intensive therapies. Severe cases of eating disorders can also cause significant electrolyte derangements, limiting the ability to give certain chemotherapies. Additionally, variations in weight also impacts the dosing of chemotherapy and may lead to subtherapeutic treatment. The presence of an eating disorder also portends other psychosocial issues, which can worsen patients’ overall quality of life and survival. For these reasons and knowing that on-therapy AYA patients carry risk factors for developing eating disorders, it would be in active oncology patients’ best interests to develop a method for eating disorder screening.