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.