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. Author manuscript; available in PMC: 2025 Mar 1.
Published in final edited form as: J Pediatr Gastroenterol Nutr. 2023 Dec 27;78(3):614–622. doi: 10.1002/jpn3.12095

Body image dissatisfaction during the first year of pediatric inflammatory bowel disease diagnosis

Grace K Cushman 1, Kelly E Rea 2, Adrianna L Westbrook 3, Colleen Alexander 4, Bonney Reed 5
PMCID: PMC10997213  NIHMSID: NIHMS1980389  PMID: 38504390

Abstract

Objectives:

Dissatisfaction with one’s body can be distressing; youth with inflammatory bowel disease (IBD) may be at increased risk for body image dissatisfaction given disease symptoms and treatment side effects. Yet, no studies have examined body image dissatisfaction over time in youth with IBD and whether depressive symptoms are associated with change in dissatisfaction.

Methods:

Fifty-seven pediatric participants (8–17 years old) newly diagnosed with IBD were enrolled. Youth completed questionnaires assessing body image dissatisfaction and depressive symptoms shortly after diagnosis (Time 1) and 12 months later (Time 2). Multilevel longitudinal modeling was used to test the extent to which body image dissatisfaction changed across the first year of diagnosis and to test change in body image dissatisfaction as a function of depressive symptoms.

Results:

Findings indicated significant between- and within-person variance in body image dissatisfaction over the 12 months, yet the sample as a whole did not report significant changes in dissatisfaction from Time 1 to Time 2. Children reporting depressive symptoms greater than their individual average over time reported greater body image dissatisfaction. Between-person variation in depressive symptoms demonstrated a significant interaction with time. As an individual’s depressive symptoms exceeded the group average, their body image dissatisfaction increased, although less drastically as time since diagnosis progressed.

Conclusions:

Findings suggest that body image dissatisfaction is a complex and dynamic construct across youth and that interventions for pediatric IBD patients need to be tailored to the needs of individuals. Methods for assessing body image dissatisfaction efficiently and repeatedly across multiple visits are provided.

Keywords: body image concerns, Crohn’s disease, depression, pediatric illness, ulcerative colitis

Graphical Abstract

graphic file with name nihms-1980389-f0001.jpg

1 |. INTRODUCTION

Rising prevalence rates of pediatric inflammatory bowel disease (IBD) are concerning given the potential effects on physical and psychosocial well-being, including dissatisfaction with one’s body.1,2 Body image dissatisfaction—the negative, subjective mental representation individuals make about their physical appearance—is common in healthy adolescents. Those with IBD may be at increased risk for body dissatisfaction given disease-related symptoms (e.g., changes in stooling, weight loss, delayed puberty) and treatment side effects (e.g., bloating, rapid weight changes, corticosteroid-related cushingoid features),3–6 and additional burden may exacerbate the already challenging maintenance of psychosocial health amid chronic disease management.7

The existing body image dissatisfaction literature within IBD has largely focused on adults, finding that greater body image dissatisfaction is associated with identifying as female, greater disease activity, and elevated psychosocial concerns.4,6 Studies with pediatric samples have similarly found that body image dissatisfaction is associated with female sex, older age at diagnosis and assessment, greater body mass index (BMI), more active disease, greater illness stigma, and more depression and anxiety.8,9 Our cross-sectional work used a body image-specific questionnaire and found that increased dissatisfaction was associated with older age and greater patient-reported disease symptoms but, notably, depressive symptoms were the only significantly associated psychosocial factor within a regression model.10 However, the cross-sectional literature has precluded determining if and how dissatisfaction with one’s body changes over time, and whether depressive symptoms are related to changes.

Patients’ experiences of body image dissatisfaction may be especially important shortly after diagnosis given the numerous challenges and transitions encountered during this period.11–13 The current study used multilevel longitudinal modeling (MLM) to test the extent to which body image dissatisfaction changed over the first year of IBD diagnosis and to test change in dissatisfaction as a function of depressive symptoms. We hypothesized that body image dissatisfaction would decrease from shortly after diagnosis to 12 months postdiagnosis and that higher depressive symptoms would be associated with greater dissatisfaction over time.

2 |. METHODS

2.1 |. Participants

Inclusion criteria were (1) diagnosis with biopsy-confirmed IBD within the last 45 days, (2) ages 8–17 years, (3) English language proficiency, and (4) being accompanied by a caregiver. Exclusion criteria were (1) documented history or parent report of a pervasive developmental disorder, autism, or nonverbal presentation that would impede the completion of questionnaires and (2) diagnosis with additional chronic illness(es) (e.g., cystic fibrosis) differentiating the child from the rest of the sample.

2.2 |. Procedures

Study procedures were approved by the local IRB. A larger, multi-timepoint study was conducted (May 2016 to December 2020) in which participants recently diagnosed with IBD were recruited from an outpatient pediatric gastroenterology clinic and inpatient hospital unit in the Southeastern United States. Participants identified while inpatient were enrolled following discharge. Body image dissatisfaction data used for the current investigation were collected shortly after diagnosis and 12 months later, corresponding to Time 1 and Time 2, respectively. Cross-sectional findings from Time 1 were previously published.10 Research staff obtained informed consent and assent at Time 1. Child and parent participants completed measures separately via iPads using REDCap electronic data capture tools.14 Participants were compensated at each timepoint.

2.3 |. Measures

2.3.1 |. Demographic and medical information

Caregivers completed a questionnaire on demographic information (e.g., age, sex, race) at Time 1. Medical and disease information were abstracted from electronic health records (i.e., diagnosis, date of diagnosis, corticosteroid prescription, BMI z-score).

2.3.2 |. Body image dissatisfaction

Youth completed a modified version of the 15-item Adapted Satisfaction with Appearance Scale (ASWAP),15 which assesses dissatisfaction with parts of the body (e.g., face, arms, abdomen) and the degree of comfort one feels regarding their physical appearance in social situations. The original ASWAP was modified for an IBD sample and is a nonweight-based measure that assesses body image dissatisfaction specifically.16 Participants rate their agreement with items on a six-point Likert scale (Strongly Disagree to Strongly Agree). A total score and two subscales are obtained: Subjective Dissatisfaction Scale (i.e., satisfaction with certain areas of their body) and a Perceived Social Impact Scale (i.e., how their appearance affects their social interactions). Higher scores indicate higher dissatisfaction or perceived impact.

2.3.3 |. Depressive symptoms

Adolescents self-reported their emotional, behavioral, and physiological symptoms of depression using the Children’s Depressive Inventory-2 (CDI-2).17 Youth selected one of three statements, per question, that best applied to them (e.g., I do not feel alone, I feel alone many times, I feel alone all the time). A total symptom severity score is represented using T-scores (M = 50, SD = 10); higher T-scores indicate higher severity of depressive symptoms.

2.3.4 |. Clinical disease activity and symptoms

The Physician Global Assessment was used as a global measure of clinical disease activity and is routinely completed by pediatric gastroenterologists at the participating institution at each medical appointment as part of the recruitment site’s participation in ImproveCareNow.18 Assignments of quiescent/inactive, mild, moderate, or severe disease activity are provided by physicians based on clinical symptoms, physical examinations, and laboratory tests.

Patient-reported clinical symptoms of IBD were assessed using the Self-Report Disease Activity Questionnaire (L. Mackner, personal communication, March 23, 2018).19 Participants reported symptoms occurring in the last week, including pain intensity and frequency, number and consistency of bowel movements (i.e., solid, mushy, diarrhea), nocturnal diarrhea, blood in stool, and impairment in daily activities due to symptoms. Higher scores indicate more clinical symptoms.

2.4 |. Analytic plan

The MIXED procedure was used for MLM in SAS 9.4. MLM is a technique used to analyze relationships between variables measured repeatedly over time, accounting for within-subject and between-subject changes. The benefits of MLM (i.e., longitudinal growth curve modeling) include the ability to model individual change (compared to aggregate change in analysis of variance models) and retain participants with missing data during longitudinal data collection.20

The unconditional means model was first modeled to determine whether there was variation in the outcome and the proportion of variance occurring between persons, calculated as the intraclass correlation coefficient (ICC). Next, a fixed linear growth model was calculated to test change over time on average across participants.

A random intercept model was utilized given that the data were balanced with two occasions.21 Depression symptoms were modeled as a time-varying predictor since they were measured at both timepoints and were entered into the model as both within-person variability (e.g., how values differ from a person’s individual average over time) and between-person variability (e.g., how individuals’ averages differ from the grand mean average over time) to account for between and within-person variability in predictors over time.21 For the time-varying predictor of depressive symptoms, a random time slope was examined to determine whether the predictor showed individually varying change over time. This was nonsignificant, indicating that a random time slope was not indicated for these predictors, therefore, time was treated as a fixed effect. To calculate within-person mean-centered values, a person’s individual average over 12 months was subtracted from their values at each completed wave. To calculate between-person variability values, the grand mean of the sample was subtracted from each person’s average to determine how a person’s average differed from the sample’s average over 12 months. Both within- and between-person variability were included in separate interaction terms with time to assess whether predictor impact on body image dissatisfaction differed over time.

Depression was selected as a predictor variable based on our cross-sectional research demonstrating a relationship between Time 1 body image dissatisfaction and depression.10 We sought to test whether this relationship differed across time using a depression × time interaction. Residual maximum likelihood was used in estimating and reporting all model parameters. Denominator degrees of freedom were estimated using the Satterthwaite method. All tests were two-sided and p < 0.05 was considered significant. Across analyses, means are noted with M.

3 |. RESULTS

3.1 |. Sample characteristics

Participants included 57 youth recently diagnosed with IBD and their caregivers. The majority of children were female (54%) and diagnosed with Crohn’s disease (79%). Most caregivers were mothers (72%) and White (71%). Fifty-seven youth participated at Time 1 and 39 at Time 2; the follow-up participation rate was 61%. T- tests indicated no significant differences in race or study variables (body image dissatisfaction, depressive symptoms) for individuals completing all timepoints or those dropping out. See Table 1 for sample characteristics and descriptive statistics for primary study variables and Digital Content S1 for Time 2 clinical variables.

TABLE 1.

Demographics and primary study variables information.

Mean (SD), n (%) Range
Days since diagnosis at Time 1 26.63 (11.60) 11–46
Caregiver age (years) 45.21 (5.56) 30–57
Child age (years) 14.26 (2.35) 8.91–17.88
Child sex
 Female 31 (54%)
 Male 26 (46%)
Child race/ethnicity
 White 41 (72%)
 Black/African American 11 (19%)
 Hispanic 2 (4%)
 Asian American 2 (4%)
 Missing 1 (1%)
Child diagnosis
 Crohn’s 45 (79%)
 Ulcerative colitis 10 (18%)
 Indeterminate colitis 2 (3%)
Physician’s global assessment
 Quiescent 21 (38%)
 Mild 24 (44%)
 Moderate 10 (18%)
Child-reported disease activity at Time 1 10.26 (9.28) 0–40
Depression symptoms at Time 1 53.63 (11.32) 40–87
Depression symptoms at Time 2 51.94 (11.20) 40–81
Body image dissatisfaction at Time 1 18.65 (17.63) 0–64
Body image dissatisfaction at Time 2 23.17 (16.76) 0–73
BMI z-score at Time 1
 Thinness 2 (3%)
 Normal 50 (88%)
 Overweight 5 (9%)
Family income at Time 1
 Up to $24,999 5 (9%)
 $25,000-$49,999 3 (5%)
 $50,000-$74,999 12 (21%)
 $75,000-$99,999 7 (12%)
 $100,000-$124,999 9 (16%)
 $125,000-$149,999 6 (11%)
 Above $150,000 11 (19%)
 Missing 4 (7%)
Prescribed prednisone 24 (41%)

Note: Physician’s global assessment available for n = 55 participants. BMI z-score categories based on World Health Organization classifications. Abbreviation: BMI, body mass index.

At Time 1, females endorsed greater body image dissatisfaction (M = 23.16, SD = 19.34) compared to males (M = 13.27, SD = 13.86; t = 2.18, p = 0.02, d = 0.59). Females also endorsed more depressive symptoms at Time 1 (M = 56.68, SD = 12.93) than males (M = 50.00, SD = 7.83; t = 2.30, p = 0.03, d = 0.62). At Time 2, females again endorsed greater body image dissatisfaction (M = 27.45, SD = 17.62) compared to males (M = 16.43, SD = 13.22; t = 2.01, p = 0.05, d = 0.71) and greater depressive symptoms (M = 55.63, SD = 11.97) than males (M = 46.14, SD = 6.85; t = 2.69, p = 0.01, d = 0.97). See Digital Content S2 for relations between primary study variables and clinical variables.

3.2 |. Changes in body image dissatisfaction over time

Figure 1 shows raw data trajectories of body image dissatisfaction from Time 1 to Time 2. This graph demonstrates variability in initial levels of dissatisfaction with one’s body and variability in how dissatisfaction changes over the first year of diagnosis. Both initial body image dissatisfaction between-person variation and within-person variation over time are further examined in multilevel models. In the unconditional means model, the ICC for body image dissatisfaction was 0.41, indicating that 41% of the variability in dissatisfaction occurred at the between-person level. A fixed linear growth model assessing body image dissatisfaction change over time revealed a significant random intercept variance of τ2U0 = 134.99 (p < 0.01) and significant residual variance of σ2e = 163.53 (p < 0.001). This indicates significant between- and within-person variance in body image dissatisfaction over time. A fixed linear time, random intercept model of body image dissatisfaction revealed that dissatisfaction increases on average by 5.34 points across persons over the first year of diagnosis from Time 1 to Time 2, though this did not achieve statistical significance (β = 5.34, p = 0.07; Table 2).

FIGURE 1.

FIGURE 1

Spaghetti plot of participants’ body image dissatisfaction over 12 months. ASWAP, Adapted Satisfaction with Appearance Scale.

TABLE 2.

Linear mixed models with time as main effect of body image dissatisfaction, and time + predictors of body image dissatisfaction.

Time as main effect of BID
Parameter Estimate SE p
Intercept 18.65 2.29 <0.0001
Time (0 = baseline, 1 = follow-up visit) −5.34 2.86 0.0684
Time + Predictors of BID
Parameter Estimate SE p
Intercept 19.25 2.11 <0.0001
Time (0 = baseline, 1 = follow-up visit) 5.65 2.45 0.0253
Child gender (ref = female) −3.22 2.94 0.2780
Within-person mean-centered CDI (child depression) 1.34 0.51 0.0104
Between person, grand mean-centered CDI (child depression) 1.18 0.15 <0.0001
Within-person mean-centered CDI × time −1.38 0.79 0.0888
Between person, grand mean-centered CDI × time −0.48 0.23 0.0459

Note. Bolded rows indicate statistical significance at p < 0.05.

Abbreviations: BID, body image dissatisfaction; CDI, Children’s Depressive Inventory; df, degrees of freedom.

3.3 |. Factors associated with body image dissatisfaction

A fixed linear time, random intercept multilevel model with identified predictors examined factors associated with the change in body image dissatisfaction over the first year of diagnosis. Selected predictors based on a priori bivariate correlations and mean difference tests were included as predictors, with the final multilevel model summarized in the bottom half of Table 2. Depressive symptom variation within-person (β = 1.34, p = 0.01) was significantly related to body image dissatisfaction; children reporting depressive symptoms greater than their individual average over time also reported greater dissatisfaction. Further, between-person variation in depressive symptoms demonstrated a significant interaction with time (β = −0.48, p = 0.046), such that between-person depression variability’s impact on body image dissatisfaction differed by time. Figure 2 (i.e., a plot of the interaction between time and between-person variation as estimated in the model in Table 2) shows an increase in between-person variation in depressive symptoms was associated with a higher increase in body image dissatisfaction at Time 1 than Time 2. This may indicate that time moderates the relationship between between-person variation in depressive symptoms and body image dissatisfaction. However, the interaction between time and within-person variation in depressive symptoms was not significant, indicating the relationship between within-person variation in depressive symptoms and body image dissatisfaction does not differ by time given the current evidence. Child sex was not significantly related to body image dissatisfaction in the full model although given sex differences in body image dissatisfaction in preliminary analyses, an exploratory subgroup analysis by sex was conducted. Results indicated no significant differences in primary outcomes with the exception that for boys only, there was no longer a main effect of time on body image dissatisfaction.

FIGURE 2.

FIGURE 2

Between-person variation in child depressive symptoms by time interaction with body image dissatisfaction. ASWAP, Adapted Satisfaction with Appearance Scale.

4 |. DISCUSSION

Adolescence is a vulnerable stage of development associated with increases in body image dissatisfaction22,23 and those with IBD may be at particular risk for experiencing body image concerns. To our knowledge, this is the first study to investigate changes in body image dissatisfaction over time and to examine change in dissatisfaction as a function of depressive symptoms in a sample of pediatric patients newly diagnosed with IBD.

Longitudinal data from the current study demonstrated that body image dissatisfaction varies between individuals and within individuals over time. Youth had varying levels of dissatisfaction with their bodies compared to each other across the 12 months. Findings suggest that body image dissatisfaction is a complex and dynamic construct, and that interventions targeting body image dissatisfaction within the context of pediatric IBD need to be tailored to the needs of individual patients. In fact, the MLM model indicated that 41% of the variability in body image dissatisfaction was accounted for by between-participant variation, demonstrating that individual differences account for a sizable proportion of the variability in dissatisfaction. The sample as a whole did not demonstrate a significant change on average body image dissatisfaction across time. This aligns with prior research with youth with Type 1 diabetes,24 indicating that examining individual-level changes in body dissatisfaction may be more meaningful than examining group trends.

There was also a significant relationship between depressive symptoms and body image dissatisfaction; within-person variability in depressive symptoms was significantly related to dissatisfaction. Specifically, youth who endorsed depressive symptoms greater than their individual average over time reported higher body image dissatisfaction. This aligns with our cross-sectional findings10 and other prior literature demonstrating an association between body image dissatisfaction and depressive symptoms over time in adolescent girls.25 Notably, there was no significant interaction between within-person variability in depressive symptoms and time regarding body image dissatisfaction given the current evidence and sample size. An increase in within-person variability in depressive symptoms was associated with an increase in body image dissatisfaction at Time 1 but appeared to decrease dissatisfaction at Time 2, although this decrease was not significant.

Regardless of time, an increase in within-person variability in depression was consistently associated with an increase in body image dissatisfaction. An interaction between time and between-person variability in depressive symptoms was also significant. While body image dissatisfaction strengthened with increasing between-person variability in depressive symptoms at both timepoints, the magnitude of this relationship decreased with time. In other words, as an individual’s depressive symptom score exceeded the group average, their dissatisfaction increased, although less drastically as the time since diagnosis progressed. Ultimately, time may affect the relationship between body image dissatisfaction and how much a person differs from the population in terms of depressive symptoms but does not have the same effect on the relationship between body image dissatisfaction and how much a person differs from their own depressive scores.

These preliminary findings have important clinical implications. First, findings suggest that newly diagnosed youth may not endorse similar levels of body image dissatisfaction compared to peers with IBD and may also report fluctuating levels of body image concerns during the first 12 months. Therefore, conducting individualized body image dissatisfaction assessments may be more clinically relevant than emphasizing overall group trends. For pediatric gastroenterology providers, it may be beneficial to assess for body image dissatisfaction throughout the first year of diagnosis. Questions such as “How often do you have negative thoughts about the way your body looks?” and “How much do these thoughts negatively affect you during an average week?” may be feasible within fast-paced clinics. By offering multilevel response options (e.g., Never, Rarely, Sometimes, Often, Always), providers can determine the severity of youths’ body image dissatisfaction and make a referral to a psychosocial provider for further assessment or intervention, if needed. Providers may also consider sharing the Body Image Toolkit with patients and families, a resource created by members of a Patient Advisory Council of ImproveCareNow.26 Finally, findings demonstrating the association between depression and body image dissatisfaction suggest that providers who already assess for depression per current clinical guidelines for annual depression screening in youth with IBD may also consider assessing for body image dissatisfaction if symptoms of depression are endorsed.27 Regular screening for body image dissatisfaction and depression is likely the most sensitive approach to identifying youth at risk for clinically relevant body image concerns.28,29

The limitations of the current study should also be noted. Our small-to-moderate sample size, combined with attrition, resulted in a limited sample size at 12 months postdiagnosis despite efforts to contact families multiple times. It is possible that the COVID-19 pandemic impacted families’ willingness and ability to participate in the final timepoint. Recruitment from one gastroenterology center, a high proportion of White, female caregivers and individuals diagnosed with Crohn’s disease, may limit generalizability. Participants generally reported low depressive symptoms and body dissatisfaction concerns, which may be expected given that recruitment occurred at a pediatric gastroenterology clinic and not a mental health center. However, this is likely representative of the general population of pediatric patients seen in most IBD clinics. Changes in body dissatisfaction over time could be partially explained by regression to the mean, however, this is unlikely given that participants were not recruited based on levels of body image dissatisfaction. Additionally, no control group (e.g., healthy control group, group diagnosed with another chronic condition) was recruited, so comparisons to other samples were not possible and should be considered in future work. The utilization of the ASWAP, the non-weight-based measure of body image dissatisfaction modified for those with chronic illness, is considered a strength of the study but also precludes us from post hoc comparisons of dissatisfaction within our sample to healthy control samples. Finally, our larger age range may have unintentionally limited the range in body image dissatisfaction scores as dissatisfaction with one’s body tends to be lower in preadolescents than teenagers.22

Future research may benefit from considering how prevention and intervention programs targeting body image could be adapted for use with youth with IBD. Although existing programs do not specifically target those with pediatric gastrointestinal disorders, preliminary evidence from nonclinical samples suggests that prevention and intervention programs could decrease body image dissatisfaction. Prior work with adolescent girls and college-aged females have demonstrated that undergoing brief interventions (i.e., three- and two- session interventions, respectively) has led to a decrease in body image dissatisfaction compared to control groups.30,31 Preliminary evidence demonstrating that body image dissatisfaction can decrease after only a few sessions suggest a potential benefit to investigating how body image dissatisfaction prevention or intervention programs may be adapted or piloted in a sample of youth with IBD. Future research should also consider examining body image dissatisfaction within a smaller age range (e.g., adolescents only) for a more nuanced understanding of changes in dissatisfaction with one’s body during certain developmental stages, which can inform targeted intervention approaches.

Supplementary Material

Supplemental Digital Content 1
Supplemental Digital Content 2

What is Known.

  • Body image dissatisfaction has been related to demographic factors, greater disease symptoms, and depression in youth with inflammatory bowel disease (IBD).

  • Conceptualization of body image dissatisfaction in youth with IBD is limited to cross-sectional findings and little is known about changes in dissatisfaction over time or how depressive symptoms may relate to any changes in body image dissatisfaction.

What is New.

  • Children reporting depressive symptoms greater than their individual average over time reported greater body image dissatisfaction.

  • As an individual’s depressive symptoms exceeded the group average, their body image dissatisfaction increased, although less drastically as the time since diagnosis increased.

ACKNOWLEDGMENTS

This research was supported by the National Center for Advancing Translational Science (NCATS) of the National Institutes of Health under Award Number UL1TR002378 and KL2TR002381 and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health under Award Number K23DK122115 awarded to the final author.

Footnotes

CONFLICT OF INTEREST STATEMENT

The authors declare no conflict of interest.

SUPPORTING INFORMATION

Additional supporting information can be found online in the Supporting Information section at the end of this article.

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