Primary Care Approaches
Patricia L. Jackson Allen, MS, RN, PNP, FAAN
Screening for Disordered Eating
Behaviors in Adolescents and Young
Adults with Type 1 Diabetes
Elizabeth A. Doyle
T
he term “disordered eating behavior” (DEB) en-
compasses many different pathological eating
behaviors. Clinical eating disorders as specified in
the DSM-V (e.g., anorexia nervosa, bulimia ner-
vosa) (American Psychiatric Association [APA], 2013) are
considered DEBs. However, DEB also includes other eating
behaviors, such as dieting and/or excessive exercise for
weight control, binge eating, and purging behaviors. Al-
though a youth who exhibits these behaviors may not meet
the diagnostic criteria for a clinical eating disorder, these
actions are still dangerous, particularly in the context of
type 1 diabetes. Unfortunately, DEBs, including insulin
manipulation to control or lose weight, are common in
adolescents with type 1 diabetes (Baechle et al., 2014;
Goebel-Fabbri, 2013), and are associated with severe com-
plications of diabetes (Peveler et al., 2005; Takii et al., 2008)
and an increased mortality (Goebel-Fabbri et al., 2008).
Because of the dangers inherent with the co-diagnosis
of type 1 diabetes and DEB, it is essential that routine
screening for DEB in adolescents and young adults occurs
during diabetes follow-up and primary care visits. Although
this screening is recommended to be done during quarterly
endocrine visits for care of the adolescent/young adult with
diabetes, it is important for primary care providers (PCPs) to
be aware of DEB, including possible insulin manipulation
in adolescents with type 1 diabetes, question the adolescent
about possible DEB, and work collaboratively with the
endocrine team to monitor such behaviors. The PCP can
also assist with arranging mental health counseling and
education on potential long-term complications associated
with DEB.
Elizabeth A. Doyle, DNP, APRN, BC-ADM, CDE, is an Advanced
Practice Registered Nurse and a Certified Diabetes Educator®, Yale
Diabetes Center, Yale New Haven Hospital, New Haven, CT, and is a
Lecturer and Course Instructor, Yale School of Nursing, Orange, CT.
The Primary Care Approaches section focuses on physical and developmental assessment and other topics specific to
children and their families. If you are interested in author guidelines and/or assistance, contact Patricia L. Jackson Allen at
pat.jacksonallen@yale.edu
PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4
Background
Prevalence/Incidence of Disordered Eating
Behaviors in Type 1 Diabetes
Many adolescents and young adults with type 1 dia-
betes struggle with DEB in addition to the challenges of
managing type 1 diabetes (Baechle et al., 2014; Goebel-
Fabbri, 2013; Peveler et al., 2005). Goebel-Fabbri (2013)
found DEB in 31% to 40% of women with type 1 diabetes
aged 15 to 30 years, while Baechle and colleagues (2014)
demonstrated that these behaviors exist in young males
with type 1 diabetes as well, although to a lesser extent.
These authors compared the incidence of DEB in over 600
youth (aged 11 to 17 years) with long-standing type 1 dia-
betes (greater than 10 years), with a demographically
matched comparison group from the general population,
and noted 31.2% of the female and 11.7% of the male
youth with diabetes had symptoms of DEB. Although the
difference in incidence of DEB in youth with type 1 dia-
betes and the comparison group was not statistically signif-
icant, the high percentage of youth with type 1 diabetes
exhibiting symptoms of disordered eating was alarming
due to the potential increase risk of complications in this
cohort, including microvascular complications of diabetes
(Peveler et al., 2005; Takii et al., 2008) and a three-fold
increase in mortality (Goebel-Fabbri et al., 2008).
Etiology of Disordered Eating Behaviors in Type
1 Diabetes
Daneman, Olmsted, Rydall, Maharaj, and Rodin (1998)
developed a model of the interactions between eating and
weight psychopathology and diabetes management and
outcomes in young women with type 1 diabetes. They pro-
posed that there is an initial loss of weight prior to the diag-
nosis of type 1 diabetes because of excessive glucosuria and
insulin deficiency, and after insulin is initiated, the lost
weight is quickly regained, often with additional weight
gain with intensive therapy. This heightens weight and
body shape concerns, resulting in an increased drive for
197
Primary Care Approaches
thinness and dietary restraint. As a result, some adolescents
with type 1 diabetes then engage in DEB, such as binge eat-
ing, and then omit or decrease their insulin to try to lose
weight, which leads to poor metabolic control, and eventu-
ally, diabetes-related complications (Daneman et al., 1998).
Adolescents are further at risk for weight and body con-
cerns because of the normal physiological/metabolic
changes that occur during this turbulent developmental
time. Sensitivity to insulin decreases significantly with the
onset of puberty, and girls are statistically more insulin-
resistant than boys and can require higher insulin doses
(Szadkowska et al., 2008). Larger insulin doses and inten-
sive insulin therapies have been associated with a higher
body mass index (BMI), an increase in body fat mass, and
weight gain in youth with type 1 diabetes, possibly perpet-
uating weight and body concerns in children and adoles-
cents with type 1 diabetes (Frohlich-Reiterer et al., 2014;
Nansel, Lipsky, & Iannotti, 2013).
Other factors have also been associated with an
increased risk of DEB in adolescents and young adults with
type 1 diabetes. Adolescents who are overweight (p = 0.01),
have lower self efficacy (p = 0.005), poorer quality of diet (p
= 0.003), and lower diabetes treatment adherence (p < 0.01)
(Tse, Nansel, Haynie, Metha, & Laffel, 2012), as well as
those who report greater family conflict (Caccavale, 2015),
are at higher risk for disordered eating.
Dangers of Disordered Eating Behaviors in
Adolescents and Young Adults with Type 1
Diabetes
Many youth with type 1 diabetes learn to control their
weight by omitting insulin. Baechle and colleagues (2012)
found that 20.5% of the female and 18.5% of the male sub-
jects in their cohort of 600 youth with type 1 diabetes
reported restricting their insulin at least three times per
week. Powers and colleagues (2012) noted that nearly one
half of their sample of older adolescents and young adults
with a mean age 26.2 ± 10.3 years diagnosed with an eating
disorder reported withholding insulin for weight loss pur-
poses.
Omitting insulin causes increased glucosuria, resulting
in weight loss and poor metabolic control, increasing the
risk of long-term microvascular complications of type 1 dia-
betes (Goebel-Fabbri, 2013). Interestingly, Takii and col-
leagues (2008) found in their sample of 109 young adult
females with type 1 diabetes and clinical eating disorders,
significant insulin omission was the eating disorder behav-
ior that was most closely associated with retinopathy and
nephropathy. In a prospective study of 87 youth with type
1 diabetes, Peveler and colleagues (2005) observed
increased complications in adolescents and young adults
with type 1 diabetes who had DEB; 26% had clinical eating
disorders or evidence of binging or purging, with 35% of
their sample reporting insulin misuse for weight control.
Overall, the health outcomes for this group were poor, with
significant microvascular complications, and the incidence
of severe complications was correlated with the presence of
a probable eating disorder (p = 0.03), history of DEB (p =
0.003), and insulin misuse (p = 0.022) (Peveler et al., 2005).
Screening for Disordered Eating
In Youth with Type 1 Diabetes
Because of the profound risks associated with disor-
dered eating and type 1 diabetes, the American Diabetes
198
Association (ADA) (2016) recommends that individuals
with diabetes be routinely screened for psychosocial prob-
lems, including depression, distress (diabetes-related), anx-
iety, and eating disorders. The International Society for
Pediatric and Adolescent Diabetes (ISPAD) goes further in
their recommendations, suggesting appropriately trained
mental health professionals (e.g., psychologist, psychiatric
nurse practitioner) assess youth for psychosocial adjust-
ment problems, eating disorders, and other psychological
disorders at planned intervals (Delamater, deWit, McDarby,
Malik, & Acerni, 2014). In fact, all caregivers involved in
the care of adolescents and young adults with type 1 dia-
betes, whether in a primary care office or a specialty clinic,
need to be aware of the potential for DEB in this popula-
tion. Clinicians should consider DEB as a possible differen-
tial diagnosis for youth who exhibit chronically poor meta-
bolic control. If signs and symptoms are not recognized,
DEB can go undiagnosed for a significant amount of time
in adolescents and young adults (Balfe et al., 2013; Quinn
et al., 2015), placing these youth at increased risk for long-
term diabetes complications (Bryden, Dunger, Mayou,
Peveler, & Neil, 2003; Goebel-Fabbri et al., 2008; Peveler et
al., 2005; Takii et al., 2008).
Choosing a Screening Tool
In their sample of 43 young adults with type 1 dia-
betes, Quinn and colleagues (2015) demonstrated that for-
mal screening identified many more young adults who
endorse DEB, compared with routine clinical surveillance
in a diabetes clinic. When choosing a formal screening tool
to assess for disordered eating in youth with type 1 dia-
betes, the healthcare provider should use a diabetes-specific
tool (Markowitz et al., 2010). Diabetes treatment necessi-
tates close attention to food intake, especially the quantity
of carbohydrates consumed. With a general eating disorder
measurement instrument, this attention to carbohydrate
intake at each meal for the management of type 1 diabetes
might be misinterpreted as disordered eating (Markowitz et
al., 2010). Further, youth with diabetes have DEB tech-
niques unique to their condition, such as the omission of
insulin, which would not be included in more general
screening measurements for disordered eating (Markowitz
et al., 2010).
One valid and reliable tool for screening youth with
type 1 diabetes for DEB is the Diabetes Eating Problem
Survey-Revised (DEPS-R) (Markowitz et al., 2010; Wisting,
Froisland, Skrivarhaug, Dahl-Jorgensen, & Ro, 2013).
Created initially for young adult women with diabetes
(Antisdel, Laffel, & Anderson, 2001), the DEPS was revised
by Markowitz and colleagues (2010) to reflect the current
more intensive therapy and the use of insulin analogues for
treatment. This 16-item self-report, diabetes-specific screen-
ing tool for disordered eating has been tested in a sample of
770 youth with type 1 diabetes (ages 11 to 19 years) and
was found to have excellent reliability and validity (a =
0.89) (Wisting et al., 2013). The DEPS-R items are scored on
a Likert scale from 0 (never) to 5 (always); higher scores
indicate greater disordered eating pathology, and it is esti-
mated to take less than 10 minutes for the youth with dia-
betes to complete this screening tool (Markowitz et al.,
2010). A recommended cutoff score of 20 or greater has
been empirically established as the threshold, warranting
further formal clinical evaluation (preferably by a mental
health specialist). The instrument has been used successful-
ly in recent studies of adolescents (Caccavale, 2015;
PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4
 Screening for Disordered Eating Behaviors in Adolescents and Young Adults with Type 1 Diabetes

Markowitz et al., 2013; Tse et al., fore metabolic control is compro-

2012) and young adults (Quinn et al., mised. Without formal recommenda-
2015) with type 1 diabetes. Although Early screening is tions from the two major diabetes
there is no cost associated with using practice organizations for the specific
this instrument, permission from critical so youth can time interval for when routine
its creator should be obtained screening should be completed,
(Markowitz et al., 2010). receive the needed providers must use their clinical judg-
Although the DEPS-R is easy to behavioral therapies ment.
administer, the additional clinical PCPs and school health pro-
time needed to administer, score, and to help prevent the viders should also recognize the
review results with the adolescent or importance of evaluating youth with
young adult can be challenging with- devastating short and type 1 diabetes for DEB. When they
in the context of a busy primary care long-term effects of have the opportunity to care for a
or specialty office. The SCOFF-ED child, adolescent, or young adult
instrument (the acronym describes disordered eating with type 1 diabetes, part of the
the five key screening questions for health assessment should be to eval-
eating disorders – “Sick, Control, One and type 1 diabetes. uate the individual’s diabetes man-
stone, Fat, Food”) (Morgan, Reid, & agement plan and understanding of
Lacey, 1999) is a reliable five-question his or her condition. All children and
measurement scale for eating disor- adolescents should receive surveil-
ders in the general population and was modified by lance and formal screening for mental health concerns,
Zuijdwijk and colleagues (2014) to make it diabetes-specific. including DEB. When caring for the person with type 1 dia-
The modified version, called the m-SCOFF, replaces the betes the PCP should specifically screen for diabetes-specific
fifth general question with the question, “Do you ever take DEB, including insulin manipulation to control weight, by
less insulin than you should?” Each question requires a asking, “Do you ever skip an insulin dose, and if so, why?”
yes/no answer, and it is considered a positive screen if two and “Do you ever take less insulin than you should, and
or more questions are answered “yes” (Zuijdwijk et al., why?” A positive response to either of these questions indi-
2014). The m-SCOFF has had limited comparative studies cates the need for further evaluation of their diabetes man-
to determine its validity, but an earlier study has found agement and referral to the endocrine team for additional
strong agreement with the Eating Disorder Inventory-3 assessment, formal DEB screening, and follow up. If screen-
(EDI-3) (Garner, 2004). Additional studies are necessary in ing is positive, then the diabetes provider should collabo-
larger samples of both females and males with type 1 dia- rate with the PCP to determine appropriate mental health
betes to determine if this short and more convenient dia- referrals and course of treatment.
betes-specific screening tool is valid and reliable before it
can be used in clinical practice. Summary
Routine screening for DEB in adolescents and young
Who Should Be Screened and When?
adults with type 1 diabetes should be completed, particular-
Because of the high prevalence rate of DEB reported in ly in youth exhibiting poor metabolic control. Although
adolescents and young adults with type 1 diabetes (Baechle formal diabetes-specific mental health screening is more
et al., 2014; Goebel-Fabbri, 2013; Peveler et al., 2005), this likely to occur in the diabetes clinic because of a greater fre-
population should have formal screening. This screening quency of visits, the PCP should be aware that manipula-
should begin during early adolescence and continue tion of insulin to control weight is a unique DEB found in
through young adulthood. people with type 1 diabetes and should specifically ask
In their most recent guidelines, the ADA (2016) sug- about this behavior whenever caring for children or adoles-
gests screening individuals with diabetes for psychosocial cents with type 1 diabetes. PCPs should work with the dia-
co-morbidities, such as disordered eating, at the time of betes specialist to arrange appropriate follow up for those
diagnosis, at the onset of complications or any other major who screen positive, and provide additional support and
metabolic change (like the end of the honeymoon phase), education for those affected youth during their primary
if hospitalized, or when they have problems with metabolic care visits. Early screening is critical so youth can receive
control, quality of life, or self-management. ISPAD suggests the needed behavioral therapies to help prevent the devas-
that appropriately trained mental health professionals as- tating short and long-term effects of disordered eating and
sess youth for psychosocial adjustment problems, eating type 1 diabetes.
disorders, and other psychological disorders at “planned in-

References
tervals” (Delemater et al., 2014). ISPAD further emphasizes

American Diabetes Association (ADA). (2016). Standards of medical

that these assessments are especially important for youth
care in diabetes – 2016: Summary of revisions. Diabetes Care,
who have chronically poor metabolic control (Delemater et
39(Suppl. 1), S4-S5.
al., 2014).
American Psychiatric Association (APA). (2013). Diagnostic and statis-
Unfortunately, a recent study (Quinn et al., 2015)
demonstrated that DEBs were not adequately assessed dur- tical manual of mental disorders: DSM-5. Washington, DC:
ing quarterly diabetes clinical visits in youth receiving care Author.
Antisdel, J., Laffel, L.M.B., & Anderson, B.J. (2001). Improved detec-
tion of eating problems in women with type 1 diabetes using a
from a diabetes clinical team. Additional research is needed

newly developed survey. Diabetes, 50(Suppl 2), A47.

to determine the optimal frequency at which more formal
screening should occur for all adolescents and young adults
with type 1 diabetes so DEB could be diagnosed earlier be-

PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4 199

Primary Care Approaches
Baechle, C., Castillo, K., Strassburger, K., Stahl-Pehe, A., Meissner, T.,
Holl, R.W., ... German Paediatric Surveillance Unit (ESPED) and
the DPV-Science Initiative. (2014). Is disordered eating behavior
more prevalent in adolescents with early-onset type 1 diabetes
than in their representative peers? The International Journal of
Eating Disorders, 47(4), 342-352. doi:10.1002/eat.22238
Balfe, M., Doyle, F., Smith, D., Sreenan, S., Conroy, R., & Brugha, R.
(2013). Dealing with the devil: Weight loss concerns in young
adult women with type 1 diabetes. Journal of Clinical Nursing,
22(13-14), 2030-2038. doi:10.1111/jocn.12231
Bryden, K.S., Dunger, D.B., Mayou, R.A., Peveler, R.C., & Neil, H.A.
(2003). Poor prognosis of young adults with type 1 diabetes: A
longitudinal study. Diabetes Care, 26(4), 1052-1057.
Caccavale, L.J. (2015). Associations of disordered eating behavior with
the family diabetes environment in adolescents with type 1 dia-
betes. Journal of Developmental and Behavioral Pediatrics,
36(1), 8-13.
Daneman, D., Olmsted, M., Rydall, A., Maharaj, S., & Rodin, G. (1998).
Eating disorders in young women with type 1 diabetes.
Prevalence, problems and prevention. Hormone Research,
50(Suppl. 1), 79-86. doi:hre0a079
Delamater, A.M., deWit, M., McDarby, V., Malik, J., & Acerini, C.L.
(2014). Psychological care of children and adolescents with type
1 diabetes. Pediatric Diabetes, 14(Suppl. 20), 232-244.
Fröhlich-Reiterer, E.E., Rosenbauer, J., Bechtold-Dalla Pozza, S.,
Hofer, S.E., Schober, E., Holl, R.W., & the DPV-Wiss Study Group
and the German BMBF Competence Networks Diabetes Mellitus
200
and Obesity. (2014). Predictors of increasing BMI during the
course of diabetes in children and adolescents with type 1 dia-
betes: Data from the German/Austrian DPV multicentre survey.
Archives of Disease in Childhood, 99(8), 738-743. doi:10.1136/
archdischild-2013-304237
Garner, D. (2004). The Eating Disorder Inventory -3 (EDI-3): Profes-
sional manual. Odessa, FL: Psychological Assessment
Resources.
Goebel-Fabbri, A.E. (2013). Eating disorders. In A. Peters, & L. Laffel
(Eds.), Type 1 diabetes sourcebook (pp. 180-186). Alexandria,
VA: American Diabetes Association.
Goebel-Fabbri, A.E., Fikkan, J., Franko, D.L., Pearson, K., Anderson,
B.J., & Weinger, K. (2008). Insulin restriction and associated mor-
bidity and mortality in women with type 1 diabetes. Diabetes
Care, 31(3), 415-419. doi:dc07-2026
Markowitz J.T., Butler, D.A., Volkening, L.K., Antisdel, J.E., Anderson,
B.J., & Laffel L.M. (2010). Brief screening tool for disordered eat-
ing in diabetes: Internal consistency and external validity in a con-
temporary sample of pediatric patients with type 1 diabetes.
Diabetes Care, 33, 495-500.
Morgan, J.F., Reid, F., & Lacey, J.H. (1999). The SCOFF question-
naire: Assessment of a new screening tool for eating disorders.
British Medical Journal, 319, 1467-1468.
Nansel, T.R., Lipsky, L.M., & Iannotti, R.J. (2013). Cross-sectional and
longitudinal relationships of body mass index with glycemic con-
trol in children and adolescents with type 1 diabetes mellitus.
Diabetes Research and Clinical Practice, 100(1), 126-132.
doi:10.1016/j.diabres.2012.12.025
Peveler, R.C., Bryden, K.S., Neil, H.A., Fairburn, C.G., Mayou, R.A.,
Dunger, D.B., & Turner, H.M. (2005). The relationship of disor-
dered eating habits and attitudes to clinical outcomes in young
adult females with type 1 diabetes. Diabetes Care, 28(1), 84-88.
doi:28/1/84
Powers, M.A., Richter, S., Ackard, D., Gerken, S., Meier, M., & Criego,
A. (2012). Characteristics of persons with an eating disorder and
type 1 diabetes and psychological comparisons with persons with
an eating disorder and no diabetes. The International Journal of
Eating Disorders, 45(2), 252-256. doi:10.1002/eat.20928
Quinn, S.M., Ambrosino, J.M., Weyman, K., Doyle, E.A., Tamborlane,
W.V., & Jastreboff, A. (2015). Screening with diabetes-specific
questionnaires can assist in timely detection of psychological
problems in young adults with type 1 diabetes transitioning to
adult care. Diabetes, 64(Suppl. 1), A364.
Szadkowska, A., Pietrzak, I., Mianowska, B., Bodalska-Lipinska, J.,
Keenan, H.A., Toporowska-Kowalska, E., ... Bodalski, J. (2008).
Insulin sensitivity in type 1 diabetic children and adolescents.
Diabetic Medicine: A Journal of the British Diabetic Association,
25(3), 282-288. doi:10.1111/j.1464-5491.2007.02357.x
Takii, M., Uchigata, Y., Tokunaga, S., Amemiya, N., Kinukawa, N.,
Nozaki, T., … Kubo, C. (2008). The duration of severe insulin
omission is the factor most closely associated with the microvas-
cular complications of type 1 diabetic females with clinical eating
disorders. The International Journal of Eating Disorders, 41(3),
259-264.
Tse, J., Nansel, T.R., Haynie, D.L., Mehta, S.N., & Laffel, L.M. (2012).
Disordered eating behaviors are associated with poorer diet qual-
ity in adolescents with type 1 diabetes. Journal of the Academy of
Nutrition and Dietetics, 112(11), 1810-1814. doi:10.1016/j.jand.
2012.06.359
Wisting, L., Froisland, D.H., Skrivarhaug, T., Dahl-Jorgensen, K., & Ro,
O. (2013). Psychometric properties, norms, and factor structure
of the diabetes eating problem survey-revised in a large sample
of children and adolescents with type 1 diabetes. Diabetes Care,
36(8), 2198-2202. doi:10.2337/dc12-2282
Zuijdwijk C.S., Pardy, S.A., Dowden, J.J., Dominic, A.M., Bridger, T., &
Newhook, L.A. (2014). The mSCOFF for screening disordered
eating in pediatric type 1 diabetes. Diabetes Care, 37, e26-e27.
PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4
Reproduced with permission of the copyright owner. Further reproduction prohibited without
permission.