Eva Szigethy, MD, PhDa,b,*, Laura McLafferty, BSa, Alka Goyal, MDb
Crohn disease (CD) and ulcerative colitis (UC) are the two types of inflammatory bowel
disease (IBD). Although UC and CD share some clinical features, they are considered
separate entities. About 25% of cases are diagnosed in childhood and adolescence.1
Affected children face a lifelong battle with troublesome symptoms such as abdominal
pain, bloody diarrhea, and fatigue. Other frequently associated problems include
delayed puberty, short stature, undesirable medication side effects, and isolation
from peers. To date, there is no cure for IBD. Patients control symptoms of the disease
with medications and surgical intervention for severe disease and complications.
Many patients have a genetic predisposition to IBD that can manifest as an overac-
tive immune response to bacteria located in the gastrointestinal tract.2–4Current
opinion regarding the etiology of IBD states that in a genetically susceptible host,
an environmental trigger (eg, infection, medication, smoking) may be the inciting
event. This trigger enables the luminal gut bacteria to cross the epithelial barrier
leading to uncontrolled downstream signaling among the gut immune cells, resulting
in recruitment and differentiation of T-cell lymphocytes.5Different T-cell subtypes are
thought to be involved in the exaggerated immune response to resident gut bacteria in
CD and UC.3,6
A growing number of different genes have been implicated in the etiopathogenesis
of both CD and UC. In CD, many of the implicated genes are involved in innate immu-
nity which, when defective, plays a key role in IBD-related inflammation. In addition to
a compromised innate immunity, these patients also display heightened adaptive
A version of this article was previously published in the Child and Adolescent Psychiatric Clinics
of North America, 19:2.
Funding support: Dr Szigethy’s research is funded by an NIH Director’s Innovator Award,
1DP2OD001210, and NIMH-funded R01, MH077770.
aDepartment of Psychiatry, University of Pittsburgh School of Medicine, 3811 O’Hara Street,
Pittsburgh, PA 15213, USA
bDivision of Pediatric Gastroenterology, Children’s Hospital of Pittsburgh, 4401 Penn Avenue,
Pittsburgh, PA 15224, USA
* Corresponding author. Division of Pediatric Gastroenterology, Children’s Hospital of
Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224.
E-mail address: firstname.lastname@example.org
? Inflammatory bowel disease ? Chronic physical illness
?Depression ?Anxiety ?Psychotherapy
? Health-related quality of life
Pediatr Clin N Am 58 (2011) 903–920
0031-3955/11/$ – see front matter ? 2011 Elsevier Inc. All rights reserved.
immunity, which keeps the inflammatory process in an active state. Innate immunity
refers to various specific defense mechanisms that come into play immediately or
within hours of an antigen’s appearance in the body. Adaptive immunity involves
a more complex antigen-specific immune response mediated by various cytokines.
Cytokines consist of a complex family of inflammatory proteins released during IBD-
related immune system activation. The mechanisms of cytokine-mediated inflamma-
tion in IBD are complex and beyond the scope of this review.3,4,7It seems that CD and
UC have very different types of cytokines involved in the inflammation; however, new
evidence is emerging that there is some overlap.8,9For example, it is hypothesized
that the T-helper (Th1) cellular immune system is the major player in mediating inflam-
mation in CD, whereas the predominant means of inflammation in UC is via the Th2
humoral immune system. More recent data have shown that a newly discovered
subset of T cells, Th17 cells, plays a critical role in inflammation in both forms of
IBD, independent of either Th1 or Th2 pathways.
Three specific examples of gene mutations associated with susceptibility to IBD and
their role in disease pathogenesis are described in more detail later.2–4The Nucleotide
Oligomerization Domain (NOD)-2 gene mutations affect the recognition and handling
of bacteria that are vital to the innate immune system and linked to increased risk of
CD. Three mutations (leu1007insC, Gly908Arg, and Arg702Trp) in the NOD2 gene
were identified in 2001 and shown to increase the risk of developing CD but not
UC. Patients carrying 1 NOD2 mutation have a two- to four-fold increased risk
whereas the likelihood increases to 20 to 40 times in patients carrying 2 mutations.
Furthermore, patients with NOD2 risk alleles develop CD at a younger age and have
fibrostenosing disease involving the terminal ileum.
As described above, NOD receptors recognize bacterial peptidoglycans, compo-
nents of the bacterial cell wall that lead to the production of various cytokines and anti-
microbial peptides. Chronic stimulation of these receptors in healthy hosts is critical
for the process of tolerance to the gut bacterial flora. It is speculated that in patients
carrying gene mutations of NOD2 receptors, the process of tolerance is defective and
bacterial exposure to the intestinal epithelium could lead to nuclear factor (NF)-kB
mediated excessive interleukin (IL)-12 production, which favors Th1 polarization of
naı ¨ve T cells, leading to CD. In addition, decreased production of antimicrobial
peptides may weaken the defensive barrier of the intestinal epithelium.
Several autophagy genes have also been associated with CD, specifically ATG16L1
and immunity-related GTPase M protein (IRGM). Autophagy is an important player in
the gut innate immune system. Autophagy is a process through which the intestinal
cells can degrade and clear various intracellular components including microbes,
organelles, and apoptotic bodies. Some of the degraded products can also attach
to HLA class II molecules for antigen presentation. The autophagy pathway also
contributes to T-cell tolerance. Recently, mutations in IL-23 receptor were found to
be associated with risk of developing both CD and UC. Carriers of Arg381Gln mutation
are 2 to 3 times less likely to develop IBD. IL-23 affects the IL-17 pathway, which is
a mediator in the Th17 lineage of T cells involved in pathogenesis of IBD. In summary,
these advances in the understanding of both the genetics and pathophysiology of the
illness have aided in the development of treatment targets for IBD.
CD and UC have overlapping clinical features including abdominal pain, diarrhea,
weight loss, hematochezia, malnutrition, anemia, fatigue, fevers, mouth ulcers, joint
pain or swelling, and characteristic skin lesions such as erythema nodosum or
Szigethy et al
pyoderma gangrenosum. Other extra intestinal manifestations seen in both UC and
CD include uveitis, sclerosing cholangitis, gallstones, and renal stones. Although CD
and UC share many symptoms and characteristics, there are numerous genetic,
anatomic, and histologic features that differentiate the 2 illnesses.
CD usually has a more insidious onset (possibly due to delayed diagnosis) and can
affect any part of the gut from the mouth to the anus. On histopathological examina-
tion, the inflammation is usually transmural and can be characterized by “skip” lesions.
The hallmark finding of granulomas is, however, present in only a few patients. The
most common region of involvement is ileocolonic, followed by colonic, small bowel,
or gastroduodenal disease. The most common presenting symptoms are abdominal
pain (86%), diarrhea (78%), or hematochezia (49%). In the pediatric population, the
patient may be diagnosed with CD while being evaluated for malnutrition, short
stature, delayed puberty, fatigue, or sometimes fistulizing disease. Fistulas are
connections formed in gastrointestinal regions affected by ulceration to other parts
of the organ or the surface of a nearby skin, seen in CD but not UC. Patients with
CD have been misdiagnosed as having anorexia nervosa, or even sexual abuse. Other
clinical manifestations include drainage, abscess (intra-abdominal or perianal), pain,
or malnutrition. Patients with CD are at risk for having a stricture or obstruction in
the small bowel or colon. As a result, they may present with bowel obstruction or
even perforation leading to peritonitis.1,10,11
Symptoms of UC can include diarrhea, abdominal cramping, and hematochezia. Due
to the presence of bloody stools, medical attention is sought much earlier than in CD.
In contrast to CD, patients with UC have primarily colonic involvement confined to
the mucosal layer without skip lesions, although patients can have gastritis or distal
colitis. Children present with pancolitis more frequently than adults. Other extraintes-
tinal manifestations such as weight loss, malnutrition, and delayed puberty are less
commonly observed. Anemia and hypoalbuminemia are common in both types of
IBD, but other inflammatory markers such as sedimentation rate and C-reactive
protein may be relatively normal in UC whereas they may be elevated in CD.1,11,12
The prevalence of CD in North America ranges from 26.0 to 198.5 per 100,000 persons
and that of UC varies from 37.5 to 229 cases per 100,000. Incidence rates of CD are
3.1 to 14.6 per 100,000 patient-years and for UC are 2.2 to 14.3 cases per 100,000
person-years.13About 1.4 million Americans suffer from inflammatory bowel disease.6
Approximately 25% of new cases of IBD are diagnosed during childhood and adoles-
cence, and peak incidence of diagnosis occurs in the second and third decades. The
incidence of CD in children appears to be increasing while that of UC has remained
relatively stable.14UC at any age and CD in older populations are evenly distributed
between the two sexes. However, in children younger than 15 to 17 years, males
with CD outnumber females by a ratio of 1.2:1 to 1.5:1. Pediatric IBD is also unique
compared with adult onset in being more extensive at the time of presentation and
undergoing continued progression within the first 5 to 7 years after diagnosis. CD
tends to have a predominantly colonic involvement in children younger than 8 years.
Family history is positive in 30% of patients diagnosed with CD before 20 years of age,
compared with 18% at 20 to 29 years and 13% after 40 years.11,15,16
Inflammatory Bowel Disease
The treatment paradigm in IBD has shifted from symptom control to mucosal healing,
which is likely to result in prevention of disease progression, fewer complications, and
reduction in the need for surgery. Other considerations in the treatment of children
with IBD are optimization of nutrition, achievement of normal pubertal development
and growth spurt, facilitation of emotional and social development, and prevention
of long-term complications and disability while minimizing unwanted side effects.
The treatment of CD depends on the location, type of disease (inflammatory, strictur-
ing, or perforating), and presence of fistulas or abscesses. Mesalamines are often
used because they are safe; however, they are unlikely to induce disease remission
on their own. At present, steroids are used as first-line therapy for induction of CD
remission. If disease is confined to the terminal ileum and cecum, oral budesonide
can be used instead of systemic steroids because it has the advantage of being
released directly into these gastrointestinal regions. Budesonide also has the added
advantage of extensive first-pass metabolism in the liver, making systemic side effects
unlikely. For maintenance of remission immunomodulators, including mercaptopurine
and methotrexate, can be used in those who cannot be weaned from steroids or who
experience relapse of their CD after steroid withdrawal. Both agents have a similar
mode of action but are used judiciously due to side effects, including an increased
risk of lymphoma. Infliximab has been found to be helpful in both the induction and
maintenance of disease remission. Other biologic agents approved for CD include
adalimumab, certolizumab, and natalizumab. The latter agent works by preventing
migration of plasma leukocytes and extracellular matrix proteins to the site of inflam-
mation in the gut. There is a high risk of infection, as natalizumab is not specific for the
In children, nutritional therapy is also a desirable first-line treatment because it is
only slightly inferior to steroids in efficacy, and it has added advantages of promoting
mucosal healing and optimizing growth.17–19The more palatable newer formulas can
be taken orally, but some patients may require placement of nasogastric or a gastro-
stomy tube. Nutritional therapy has no side effects, but adherence to a strict diet for 8
weeks on polymeric formula alone is often prohibitive, particularly during adolescence
when peer imitation is an important driver of identify formation. Although the exact
mechanism of action is not well understood, various possibilities include enhance-
ment of the innate immune system as a result of better nutritional status, reduced anti-
genic load in the distal intestine, and altered gut flora. Surgery in patients with CD is
used mainly for complications such as stricture, abscess, perforation, or fistulizing
disease. Surgery is not curative for CD because of a high risk of postoperative disease
For mild to moderate disease severity, oral and rectal mesalamines are the mainstay of
therapy. Most preparations are formulated to be released in both the terminal ileum
and colon, or just the colon. These agents are now also available in once-daily dosing
options to improve adherence. Mesalamines work by inhibition of NF-kB and leuko-
triene synthesis, modification of neutrophil-mediated tissue damage, and scavenging
of reactive oxygen species. Patients who fail to respond to mesalamines or who have
severe disease can be treated with oral or intravenous steroids. Steroids have
a general anti-inflammatory effect and also inhibit cell-mediated immunity, but
Szigethy et al
prolonged use can lead to unacceptable side effects including short stature, weight
gain, moon facies, and skin striae. If a patient is unresponsive or becomes steroid
dependent, then immunomodulators such as mercaptopurine may be used, and bio-
logic agents such as infliximab, a cytokine antagonist targeting tumor necrosis factor
a (TNF-a), have been effective in avoiding or at least delaying the need for surgery.
TNF-a is a key cytokine involved in the pathogenesis of IBD. As a last resort, surgery
can be curative in UC as the disease is confined to the colon, although it requires the
surgical placement of an ostomy, either temporarily or permanently.20–22
INCIDENCE OF PSYCHOLOGICAL/BEHAVIORAL DISORDERS IN CHILDREN WITH IBD
Adjustment Disorder/Depression and Anxiety
The diagnosis of a chronic illness such as IBD during childhood can involve a grieving
process that begins with shock and disbelief and proceeds through feelings of anguish
(sadness) and protest (anger) toward the gradual assimilation of illness information
and adjustment to the implications of the disease. In both children and adolescents,
the diagnosis of IBD can involve a sense of loss in any one of the following areas: inde-
pendence, sense ofcontrol, privacy, body image, healthy self, peerrelationships, roles
inside and outside the family, self-confidence, productivity, future plans, familiar daily
routines, ways of expressing sexuality, and pain-free existence. The child’s reaction to
IBD, including the degree of perceived loss, is moderated by developmental factors,
disease severity, and environmental/social factors (eg, family reaction). For example,
adolescents with severe physical illness may have fragile self-esteem due to delays in
physical growth or pubertal maturation, shame associated with fecal incontinence, or
steroid-induced weight gain, and thus have a more challenging adjustment to the
disease.23There are, however, conflicting reports as to what extent self-esteem is
affected by IBD. Some studies suggest that self-esteem in adolescents with IBD is
comparable with that of healthy controls,24contradicting others that found self-
esteem worse in those affected with IBD.25–27One factor that seems to negatively
affect self-esteem is more severe disease activity and having separated parents.24
Children with IBD may experience overwhelming psychological distress including
guilt for being a burden to caretakers, threats to narcissistic integrity and self-
fear of loss of love and approval, fear of loss of control of bodily functions, and fear of
pain and humiliation. Invasive medical procedures can result in traumatization and
reactions ranging from dissociation, emotional blunting, anxiety, and anger (Szigethy
and Siegle, unpublished observations, 2009). Although initially most children deny
that IBD interferes with their lives, with persistent questioning many admit frustration
and anger about their IBD symptoms and treatment.28Children with IBD also exhibit
concern about fatigue, body image, and lack of control over activities (eg, school,
sports, and work).25,29–31
Several studies have found that adolescents with IBD are more depressed than
adolescents with other diseases,26,32–34with rates of depression as high as 25%.35
In a study by Mackner and colleagues,25children with IBD and depression were at
an increased risk of anxiety.36Anxiety disorders have also been described in adoles-
cents with IBD.37Externalizing disorders (eg, disruptive behavioral disorders, conduct
disorder) and attention deficit hyperactivity disorder (ADHD) have been less well
studied in these children. Disordered eating (eg, severe restriction often secondary
to abdominal pain) is commonly seen in clinic but the rate of eating disorders has
not been studied. The temporal relationship between mood and anxiety disorders
and IBD has also not been systematically examined. Children diagnosed at a younger
Inflammatory Bowel Disease
age appear to adjust better than older teenagers. Whether this is due to a more flexible
sense of self-identity, cognitive maturation, or differences in the grieving process or
processing of illness experience has not been studied.
Influence of Physiologic Changes of IBD on Psychological Functioning
Physiologic changes associated with the disease process itself (eg, cytokine-induced
inflammation, steroid treatment) may affect the brain, thereby resulting in emotional
and behavioral changes that further compromise the child’s adjustment.38Szigethy
and colleagues35found in a study of 102 youths with IBD that those who had moderate
to severe IBD-related symptoms had significantly greater depressive severity than
youths with inactive disease. Furthermore, depressive severity has been strongly
associated with the degree of pain and diarrhea, as well low plasma albumin levels.39
Hypoalbuminemia may be a marker for both chronic inflammation and malnutrition. In
another study, pediatric patients with inactive IBD or with mild disease for at least 1
year reported normal emotional/behavioral functioning, similar to that of healthy chil-
dren.40In children with IBD, exogenous steroids used to treat IBD have been associ-
ated with impairment in mood, executive function, and short-term memory.35,41
In adults with IBD, there was a significant inverse correlation between sleep quality
and IBD severity,42and abnormal sleep patterns were reported even in patients with
inactive IBD compared with normal controls. Because they often need more sleep,
sleep disturbances could have an even greater impact on adolescents and adversely
affect their quality of life (QOL), psychological functioning, and coping ability. Given
that sleep is critical for disease healing, studies are needed to determine how IBD
affects sleep architecture, duration, and quality, so that better treatments for insomnia
and fatigue can be developed.
Functional Abdominal Pain
Even in remission, IBD patients may still experience severe gastrointestinal symptoms
similar to those present in irritable bowel syndrome (IBS), including abdominal pain,
bloating, abdominal distention, diarrhea, urgency, loose stools, constipation, hard
stools, and incomplete bowel movements. In adults, approximately one-third of
patients with UC and two-thirds of patients with CD report these symptoms, possibly
from the visceral hypersensitivity or autonomic dysfunction induced by chronic
toms is about 3 times higher than in healthy controls, and these patients had impaired
health-related quality of life (HRQOL) similar to that of patients whose UC was in the
active phase.44In children with quiescent CD, rectal sensory threshold for pain
(RSTP) was significantly decreased in comparison with that of healthy controls, and
was similar to the RSTP of children with functional gastrointestinal disorders.45
Because medications are critical to the management of IBD, medical adherence is
particularly important for children with IBD. Although having to take daily medication
can adversely affect QOL, the consequences of nonadherence can lead to more
severe disease and QOL outcomes, including an increase risk for surgery.46Adher-
ence can be especially problematic during adolescence. One study found that medi-
cation adherence rates in pediatric IBD were 38% according to parents and 48%
according to the children studied.47Family dysfunction and poor child coping strate-
gies were associated with worse adherence. In a sample of 44 patients 10 to 21 years
Szigethy et al
old who had IBD, there was a significant relationship between age and dietary adher-
ence, with younger children more likely to report better dietary adherence.48In another
study, medication adherence was assessed in 36 adolescents with IBD via interviews,
pill counts, and biologic assays. Nonadherence to 6-mercaptopurine/azathioprine (6-
MP/AZA) was related to poorer self-reported physical health QOL. In contrast, greater
adherence to 5-aminosalicylate (5-ASA) was related to poorer psychological health
QOL, especially social functioning, on the Pediatric Quality of Life Inventory.49These
results may be related to the child’s perceptions that taking multiple pills is related to
poorer QOL, particularly in social realms. The interaction between social functioning
and treatment adherence was also illustrated in a recent study showing that positive
social relationships buffered the negative effects of peer victimization on treatment
adherence in youth with IBD.50
In adults with IBD, depression and life stressors have been associated with a more
refractory course of IBD; however, this has not been studied in children. Camara
and colleagues51found that 13 of 18 prospective studies conducted since 1980
reported a statistically significant association between stress and worsened IBD
outcomes in adults. In another review, Singh and colleagues52found strong evidence
for an association between perceived stress levels and IBD flares. There is evidence
that the course of IBD is worse in depressed patients,53and in an animal model
of colitis, induction of a depressive episode in mice reactivated the colitic
Several studies have probed illness perception in children and adolescents. In
response to questions that explored the impact of IBD on their daily lives, children
with IBD aged 7 to 19 years, themes of discomfort from symptoms and treatment,
vulnerability, diminished control over their lives and future, and seeing themselves
as different from healthy peers were commonly discussed.55Additional difficulties
noted were lack of energy, food restriction, medication side effects, diminished self-
perception, and less social interaction.
In a study consisting of 50 depressed adolescents, qualitative illness narrative anal-
ysis of perception of IBD experience was conducted using responses to 10 questions
in a structured interview to probe themes of pessimism, contingency (ie, a sense the
child could control their disease), and coping with IBD. This study found that IBD
severity was inversely correlated with positive contingency as well as positive feelings
about IBD medications. In addition, depressive severity was associated with negative
self-competence and sense of damaged self (McLafferty and Szigethy, unpublished
observations, 2010). These correlations were not affected by age or gender. In another
study examining how 17 adolescents (age 11–17 years) with IBD responded to their
parents’ concern for them, ambivalence was the most prevalent theme described.
There was an oscillation between seeking close contact with one’s parents and
pushing them away. The other theme categories that emerged were ability/inability,
compliance/resistance, and trust/distrust, suggesting that it is important to have an
awareness of the simultaneous existence of conflicting attitudes, reactions, and
There are several reports of shame and embarrassment in the literature concerning
adolescents with IBD. Nicholas and colleagues57interviewed 80 children and adoles-
cents (7–19 years old) with IBD, concerning the impact of IBD on their lives. The inter-
viewees revealed negative body-image perceptions from the disease process (short
Inflammatory Bowel Disease
stature, weight loss, physical weakness) and side effects from treatment (weight gain,
acne, visible nasogastric tube). There is also embarrassment related to using public
bathrooms.55In another study of 20 adolescents with ostomies or J-pouches, embar-
rassment and shame were recurring themes that led to hesitance about revealing their
ostomy,57and fear that it would be discovered. Adolescents were able to develop
acceptance of their ostomies over variable amounts of time, particularly with more
education and independence in the care of the ostomy.
Psychosocial Functioning/Quality of Life
HRQOL is a concept that consists of the physical, emotional, and social aspects of
health perception and health functioning. Several instruments are now available to
measure IBD-related HRQOL, including generic and disease-specific types. Generic
assessments are multidimensional problem lists designed to be applied to any popu-
lation, and they are able to compare QOL in populations with different diseases.
Generic measures have been used in HRQOL studies in both adults58,59and children
Disease-specific instruments focus on concerns relevant to a particular illness.
Unlike generic measures, they can measure changes in HRQOL over time or with
treatment.58,61One disease-specific measure developed and validated for children
is the IMPACT questionnaire, designed for use in youths 10 years or older. Its most
recent form, IMPACT-III, consists of 35 questions encompassing 6 domains: IBD
symptoms, body image, functional/social impairment, emotional impairment, treat-
ment/interventions, and systemic impairment. The patient’s current health status
is believed to have the greatest influence on responses to the IMPACT
questionnaire.62,63This pediatric IBD-specific measure accomplishes 3 tasks: (1) doc-
umenting the effects of health care interventions on patient outcomes; (2) providing
a more complete picture of the patient than that available from pediatric IBD disease
indices alone; and (3) helping to identify the needs of the child with IBD and success of
In pediatric IBD, adolescents with IBD symptom exacerbation are more likely to
express greater psychosocial difficulty,65–67but steroid exposure, hospitalizations,
and time from IBD diagnosis did not significantly impact HRQOL in children with
IBD.67In young adult patients who were diagnosed with IBD as children or adoles-
cents, HRQOL was significantly decreased when compared with healthy age-
matched controls.68Indeed, compared with healthy controls, children with IBD have
decreased psychosocial health, social functioning, and school functioning.25,69
Interviews with adolescents with CD stress the importance of achieving a balance
between adequate social support and time for self-reflection.70One area of the phys-
ically ill adolescent’s life in which this balance can be difficult to achieve is family func-
tioning. Children with IBD who have good mental health reported a good family climate
and open social network,27and positive affect in mothers of adolescents with IBD is
inversely correlated with the adolescents’ depression.71Family conflict and low
QOL have been positively correlated with pain, fatigue, depression, and lower QOL
in children with IBD. Collectively, studies suggest that family functioning is an impor-
tant component of how children cope with chronic illness. In addition, parents of chil-
dren with IBD reported significantly less social support and mothers reported greater
distress compared with parents of healthy children.72The lack of social support, but
not parental distress, was correlated with increased behavioral problems in children
with IBD. If it is possible that a family’s dynamic is influencing the adolescent’s health
Szigethy et al
status, therapy should be implemented to examine and potentially improve family
functioning and parental affect.
Transition to Adulthood
Even without the presence of a chronic physical illness, adolescence is a challenging
life phase with significant changes in both physiologic (eg, emotional regulation,
cognitive processing, maturation of self-image) and physical (eg, pubertal changes,
growth) realms. The transition from adolescence to adulthood may be particularly
challenging for youth with a chronic disease such as IBD. In individual interviews 6
patients 19 to 24 years old with UC and a temporary ostomy identified several themes
present in their experiences living with UC and an ostomy: embarrassment, feeling
different, and unpredictability/sense of loss of control.73In a study of 22 patients 15
to 21 years old who have a chronic illness (23% had IBD), most adolescents antici-
pating their transfer to adult care identified only negatives about the transition and
felt unprepared at the time of their interview with Tuchman and colleagues.74College
students with active IBD have significantly poorer adjustment to college and students
with IBD had lower physical QOL compared with healthy controls,75suggesting that
this transition is important to monitor. The goals of successful transition to adulthood
include the acquisition of skills to manage their illness, including further education/
knowledge about their illness as well as relaxation techniques to manage stress,76
to continue striving for autonomy and self-regulation and for identity formation by
learning from trial and error.
COMMON TREATMENT MODALITIES
Psychotropic medications are often used to treat patients with IBD, although they
should only be considered after a thorough psychological assessment has been
completed and behavioral therapy has been deemed inadequate or unavailable. In
a survey of 18 gastroenterologists, Mikocka-Walus and colleagues77found that
78% had prescribed antidepressants for their IBD patients for the purpose of treating
pain, depression, anxiety, and insomnia. In a review by Mikocka-Walus and
colleagues,7810 of 12 nonrandomized studies involving adults with IBD suggested
that paroxetine, bupropion, and phenelzine were effective in the treatment of psycho-
logical and somatic symptoms in these patients. Amitriptyline was found to be ineffec-
tive for treating somatic symptoms of IBD, and mirtazapine was not recommended for
use in IBD patients. Desipramine attenuated the susceptibility of a murine model of
depression to colitis,79and in adults with IBD, bupropion improved depression and
IBD severity, and was particularly effective for fatigue and concentration difficulties.80
Whether the newer proinflammatory cytokine antagonists being used to treat IBD will
prevent depression remains to be determined. Of note, most psychotropic medica-
tions have the potential for serious side effects (eg, increased suicidal ideation),
may have drug-drug interactions with IBD-related medications, and require careful
monitoring. Thus, the first-line approach to psychological problems is psychosocial
intervention, discussed next in this article.81Factors used to determine which medica-
tion in this class to initiate include symptom complex, family history of medication
response, and gastrointestinal tolerability.
In a study by Casellas and colleagues,82IBD patients were surveyed about the health
care they receive, and virtually all patients in that survey considered having adequate
Inflammatory Bowel Disease
information about their disease process as very important. Of note, only half of those
patients thought they had sufficient information. Having inadequate information was
found to result in poorer reported QOL.83In one study, 69 adults with IBD were
randomly assigned to either an educational intervention focused on IBD or treatment
as usual.84The educational group had greater knowledge about IBD, increased satis-
faction, and improved medication adherence, but therewas nosignificant difference in
HRQOL between the 2 groups. In another study, 49 adult patients with IBD who
received 8 sessions of educational intervention did not exhibit any significant change
in anxiety at 6-month follow-up visit, or any significant changes over time in bowel
symptoms, systemic symptoms, emotional or social functioning portions of the Inflam-
matory Bowel Disease Questionnaire (IBDQ), or in generic HRQOL (as measured by
SF-36).85Educational interventions employed include written information, interactive
computer learning models, social skills, and disease management training.
Self-management training was shown to improve HRQOL.86,87In one study of 700
adults with IBD, patients randomized to a self-management approach to illness (by
being provided with information designed to promote patient choice and decreased
health care visits) reported better QOL and increased confidence in being able to
cope with their IBD compared with those in the usual treatment group.86A brief
psychosocial group intervention consisting of education and group therapy versus
usual medical treatment in 44 adults with inactive IBD resulted in no significant
improvement in HRQOL or coping ability over a 12-month period.88
The social, educational, and long-term vocational goals of adolescence, as well as
the goals of achieving autonomy, self-regulation, and identity formation, can be
enhanced by the acquisition of skills to manage the illness. Grootenhuis and
colleagues89studied 22 adolescents with IBD who received psychoeducational inter-
vention that included training in information-seeking skills, relaxation, social compe-
tence, and positive thinking, and found that the intervention had a positive effect on
coping, feelings of competence, and HRQOL.
Cognitive Behavioral Therapy
In adolescents, results from psychotherapy studies are positive. Depressed youth with
IBD who received cognitive behavioral therapy (CBT) with focus on illness perception
had significant improvements in depression and perceived control over IBD compared
with those receiving their usual medical treatment. Such was the case even after
controlling for change in IBD severity and steroid burden that may have precipitated
some depressive features.90,91In addition, the benefits of CBT on depressive symp-
toms and global functioning persisted 1 year after treatment.34The model of CBT
used was focused on helping adolescents determine the appropriate locus of control
and adjusting their behaviors and thoughts accordingly.92Adolescents with IBD have
also been found to benefit from cognitive reappraisal and developing interest in activ-
ities that can exist within the limitations of their disease process (eg, crafts).55The
more positive effects of psychotherapy in adolescents may be due to their more flex-
ible behavioral repertoires and less-engrained maladaptive coping strategies.
Narrative therapy emphasizes the patient’s personal story or narrative of their illness,
and has been shown to be strongly associated with psychological adaptation. The
therapist encourages the patient to relate his or her illness narrative, which in children
typically centers on 5 pervasive themes: (1) identity (the symptoms the child sees as
part of their illness); (2) cause (the child’s personal ideas about the etiology of their
illness); (3) time-line (how long the child feels that the illness will last); (4) consequences
Szigethy et al
(the child’s anticipated effects of the illness); (5) cure and control (how the child
expects to recover from or control the illness).93Although the sharing of illness narra-
tives on appropriate Web sites (eg, http://www.experiencejournal.com) has not been
tested for efficacy, children with chronic physical illness have found online communi-
ties that promote real-time sharing of narratives to be both safe and enjoyable.94
It is feasible to implement narrative strategies using a family systems perspective.
The illness narrative becomes the family’s story of their child’s illness and its impact
on the family system. De Maso and colleagues95found that computer-based narrative
sharing was helpful for families of depressed children in increasing familial under-
standing of the child’s illness, increasing hope, and augmenting positive reactions in
the children’s caretakers.
Relaxation and hypnosis have been used to target symptoms of anxiety and abdom-
inal pain, and to improve immune functioning. Hypnotherapy was shown to have
promising effects on IBD course and QOL in 15 adults with severe IBD refractory to
corticosteroid treatment,96and Keefer and Keshavarzian97found that after hypno-
therapy, 8 female patients with IBD reported a significant improvement in QOL. Yet
in another study, 2 female patients with CD, 1 with CD in active phase and the other
in remission, reported improved coping and psychological state but no change in
IBD symptoms or QOL after receiving hypnotherapy.98In patients with UC, hypno-
therapy was shown to significantly improve IBD-related inflammation.99Shaoul and
colleagues100found that hypnotherapy improved clinical symptoms of IBD and
decreased inflammatory markers in 6 children with IBD. Hypnotherapy was also
shown to decrease abdominal pain in pediatric IBS.101Given the higher susceptibility
to hypnosis of children compared with adults, the therapeutic use of hypnosis holds
promise for treatment of abdominal pain and emotional symptoms in pediatric IBD.
Social Support/Support Groups
In adult IBD patients, social support has been shown to have a positive impact on
QOL.102Support from family members and friends has been shown to have a positive
effect on coping in children with IBD.55Social support from other adolescents with
IBD can also be valuable. Adolescents who attended a summer IBD camp experienced
improved social functioning, improved total QOL, and better acceptance of IBD
symptoms103; this may act to normalize the illness experience. Female adolescents
with IBD and their mothers who participated in monthly support groups for 1 year con-
sisting of education and social interaction reported that the sessions were helpful, and
subscales of IMPACT-III from baseline to post-treatment.104There are several Web-
based interactive Internet sites available for children and adolescents with IBD that
also provide educational materials and opportunities for social interaction and sharing
IBD experiences. These sources include http://www.ccfa.org; http://www.myibdu.
org; http://www.experiencejournal.com/ib/index.shtml; http://www.ibdsf.com; http://
www.starlight.org; and http://www.ucandcrohns.org. Future studies are needed to
assess these promising interventions for efficacy using randomized controlled trials.
It is critical that all children and adolescents with IBD have an educational plan in place
in case they need to miss school dueto IBD flare-ups or treatment (eg, hospitalization).
A 504 Plan is a federally mandated document that public schools are required to
follow. This plan indicates that any child with a chronic illness or disability who misses
Inflammatory Bowel Disease
school due to their condition or its treatment needs to be provided with an individual-
ized educational plan to catch up without penalty.105Although such plans are individ-
ualized based on the specific needs of each student, common requests include
discrete bathroom access, tutoring for missed classes, and extra time to catch up
on examinations and assignments without penalty. Even though private schools are
not mandated to follow such plans, often they cooperate with a letter from a physician
requesting such services. The 504 Plan can also be used to educate school officials
and teachers about IBD so they can better adjust the educational plan.
Pediatric-onset IBD is a lifelong chronic illness with high medical morbidity and asso-
ciated psychological and psychosocial challenges. Depression and anxiety are partic-
ularly prevalent and have a multifaceted etiology, including IBD-related factors and
psychosocial stress. Youth with active IBD or receiving treatment with steroids, social
isolation, family conflict, or showing impaired social or academic functioning would
particularly benefit from screening for psychiatric comorbidities, especially anxiety
and depression. Furthermore, exploring a child’s illness perceptions and experiences
can also inform providers of targets for psychosocial interventions. Fortunately, there
are a growing number of empirically supported treatments, such as CBT, to help with
coping with IBD as well as the related psychological and psychosocial difficulties.
While there is convincing evidence that such interventions can help improve anxiety,
depression, and HRQOL, their effects on IBD severity and course await further study.
Further studies are also needed to assess developmental and cultural factors in treat-
ments aimed at improving QOL and decreasing suffering in this chronic illness popu-
lation until a cure can be found.
The authors would like to thank Maggie Kirshner for her administrative assistance
with the manuscript and David Benhayon, MD, PhD, Christine Karwowski, MD,
Melissa Newara, MS, Patricia Delaney, LCSW, and Amy Levine, MSW, PhD for their
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