Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis

Abstract

This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children’s hospital. Thirty-two AYAs, aged 15–39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one’s body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.

Background

Approximately 89,000 adolescents and young adults (AYAs) aged 15–39 years in the United States and 900,000 AYAs worldwide are diagnosed with cancer annually.^1–3 AYAs represent a distinct population with unique care needs.^2,4 Unmet AYA care needs are associated with higher rates of psychosocial dysfunction, poorer outcomes, and lower health-related quality of life.⁴ AYAs describe significant body dissatisfaction and negative self-image during and after cancer treatment, citing treatment-related body changes as a contributing factor.^5–9 AYAs report that communication from their care teams regarding anticipated body changes in advance of and during treatment is lacking, and remains an unmet need.^5,6

To begin to address AYA care needs within this domain, a better understanding of frequently endorsed body image (BI) concerns within this population is required. The existing studies describing BI in AYA oncology patients are heterogeneous in terms of design, inclusion criteria, and measures utilized.^5,8,10,11 There is a paucity of data on male, non-White, and gender diverse populations.⁵ A recent scoping review identified eight studies that included patients receiving active treatment.⁵ Five studies generated data via qualitative, semi-structured interviews.^12–16 Three studies utilized subscales from quality-of-life measures in different languages, with no studies utilizing the same measure.^17–19 AYAs who reported changes in physical appearance experienced negative self-image and poorer interactions with peers.⁵ However, these studies did not specifically describe which physical changes or BI concerns were most prevalent.⁵ In order to build on this data, we sought to identify the most frequently endorsed BI concerns in an AYA cohort utilizing validated, quantitative measures that mapped onto BI domains.^10,20–23

The purpose of this study was to describe the most frequent self-reported BI concerns in AYAs aged 15–39 receiving or having recently received treatment for neoplasms (between 30 days and 6 months from diagnosis). A secondary aim was to describe BI concerns by sex assigned at birth.

Methods

AYAs were recruited at a quaternary care children’s hospital with a comprehensive pediatric and young adult oncology program between January 6, 2023, and March 28, 2023. AYAs aged 15 to 39 years at the time of study with newly diagnosed neoplasms (30 days to 6 months from diagnosis) who received antineoplastic treatment were eligible to participate. Patients who were not fluent in English and/or those with relapsed or secondary neoplasms were excluded. Institutional outpatient clinic schedules and inpatient census were screened weekly, with eligible AYAs recruited during hospital visits. After obtaining informed consent, participants completed one in-person study visit that included questionnaires and a demographic form. Patient and clinical variables were collected via medical record review. The hospital’s Institutional Review Board approved all study procedures.

Body Image Measures

Patients completed four quantitative Likert-scale measures. Measures were selected following a literature review based on their strong psychometric properties and previous use in AYA cancer survivors (Body Image Instrument [BII])¹⁰ and age-matched community samples (Brief [Seven-Item] Eating Disorder Evaluation [EDE-Q7]),²⁰ including male and gender diverse populations (Muscle Dysmorphic Disorder Inventory [MDDI], Muscular-Oriented Eating Test [MOET]).^21–23

Body Image Instrument

The BII¹⁰ is a 28-item measure comprised of five subscales: General Appearance (GA), Body Competence (BC), Reaction of Others to Appearance (RO), Value of Appearance (VA), and Body Parts (BP) (α: 0.86-0.95 in prior studies). Items are rated on a scale of 1, “Disagree” to 5, “Agree”. Scores for each subscale are the computed means of the items that comprise the subscale. Lower scores on the BII represent BI concerns. One item was modified with permission for inclusivity (Appendix).

Brief (Seven-Item) Eating Disorder Evaluation (EDE-Q7)

The EDE-Q7²⁰ is a 6-item measure comprised of three subscales: Dietary Restraint (DR), Weight/Shape Over-Evaluation (W/S), and Body Dissatisfaction (BD) (α: 0.894-0.916 in prior studies). Items are asked in relation to four weeks (28 days) prior to questionnaire completion, and rated on a scale of 0, “No Days” to 6, “Every Day”. Scores for each subscale are the computed means of the items that comprise the subscale. Higher scores on the EDE-Q7 represent BI concerns. This version excludes items regarding bingeing and purging, which would be confounded in oncology patients.

Muscle Dysmorphic Disorder Inventory

The MDDI²¹ is a 13-item measure comprised of three subscales: Drive for Size (DFS), Appearance Intolerance (AI), and Functional Impairment (FI) (α: 0.77-0.85 in prior studies). Items are rated on a scale of 1, “Never” to 5, “Always”. Scores for each subscale are the computed means of the items that comprise the subscale. Higher scores on the MDDI represent BI concerns. One item was modified with permission for inclusivity (Appendix).

Muscular-Oriented Eating Test

The MOET^22,23 is a 15-item measure that assesses attitudes toward muscularity and muscle-oriented behaviors (omega: 0.92–0.93 in prior studies). Items are rated on a scale of 0, “Never True” to 4, “Always True”. The total score is the computed mean of all items on the measure. Higher scores on the MOET represent BI concerns.

Demographic and Clinical Information

Patient and clinical variables (age, sex assigned at birth, body mass index, diagnosis, dates of diagnosis and treatment initiation, active treatment status at the time of the study, and therapies received, including chemotherapy, corticosteroid use, surgery, and radiotherapy) were collected from medical records using a standardized data extraction form. Initial oncology consultation, clinical notes, and individual patient diagnoses lists were reviewed to record if any patient had a formal diagnosis of an eating disorder or body dysmorphic disorder documented in their medical record before or at the time of study participation. Patient-reported variables (gender identity, sexual orientation, race, ethnicity, relationship status, education, employment, income, and insurance status) were obtained via a demographic form.

Analyses

Responses to each BI concern item were dichotomized as “present” or “absent” based on clinical cut-offs and previously published literature.^10,20–25 Specifically, items rated as a 2 or lower on the BII; 4 or higher on the EDE-Q7; 3 or higher on the MDDI; and 3 or higher on MOET were considered “present”.^10,20–25 The 15 most frequently endorsed “present” items (top quartile) were identified.

Overall mean subscale/total scores for the whole cohort and by sex assigned at birth were computed for each measure using Excel and GraphPad Prism Statistical Software (San Diego).

To supplement quantitative data, two open-ended questions were asked. Q1: Can you describe, in your own words, your body image during cancer treatment? Body image may refer to how you experience your body (what you see and feel) or how you think or feel others may perceive your body/appearance. Q2: Has your body changed during cancer treatment? If so, how?

Results

Enrolment and survey completion

Thirty-six eligible AYAs were invited to participate. Three patients declined. One patient expressed interest but died before participation. Thirty-two AYAs completed questionnaires (enrolment rate 89%).

Patient characteristics and clinical variables

Patient characteristics and clinical variables were summarized in Table 1. None of the patients had a pre-existing body dysmorphic disorder or eating disorder diagnosis.

Table 1.

Patient Characteristics and Clinical Variables

Patient Characteristics	n (%)
Age
Mean (Range)	20.2 (15.1–38.5)
Age 18 and younger	22 (68.8)
Age 19 and older	10 (31.2)
Sex
Male	16 (50)
Female	16 (50)
Race
White	24 (75)
Black	6 (18.7)
Other Race	2 (6.3)
Ethnicity
Non-Hispanic	30 (96.8)
Hispanic	1 (3.2)
Sexual Orientation^a
Heterosexual	29 (93.5)
Gay	1 (3.2)
Don’t Know	1 (3.2)
Body Mass Index (BMI), kg/m², Mean (Range)	25.7 (15.8–45.2)
Relationship Status
Single	19 (59.4)
In a relationship	12 (37.5)
Other	1 (3.1)
Highest Level of Education Completed^b
Not yet completed high school	18 (60)
High school	7 (23.3)
College/Vocational	2 (6.7)
Undergraduate degree	1 (3.3)
Graduate/Doctoral degree	2 (6.7)
Employment Status, current^b
Full-time work (> 40 hours per week)	3 (10)
Part-time work (< 40 hours per week)	1 (3.3)
Employed, but not working	8 (26.7)
Not currently employed	17 (56.7)
Self-reported Income Quintile^c
1st Quintile (<$27,000 USD)	6 (37.5)
2nd Quintile ($27,000–$51,999 USD)	1 (6.3)
3rd Quintile ($52,000–$84,999 USD)	2 (12.5)
4th Quintile ($85,000–$140,000 USD)	3 (18.8)
5th Quintile (>$140,000 USD)	4 (25)
Insurance Status^d
Private	18 (75)
Public, including Medicaid	5 (20.8)
Uninsured	0 (0)
Other	1 (4.2)

Clinical Variables	n (%)
Diagnosis Category
Solid tumor, non-CNS	15 (46.9)
Leukemia/Lymphoma	10 (31.3)
CNS tumor	4 (12.5)
Other	3 (9.4)
Treatment Characteristics
Time since diagnosis, days, Mean (Range)	89.9 (31–180)
On active treatment	29 (90.6)
Time since initiating treatment, days, Mean (Range)^e	65.2 (15–176)
Treatment Modality
Chemotherapy	29 (90.6)
Corticosteroid use^f	12 (37.5)
Surgery	23 (71.9)
Incisional or excisional biopsy or resection (diagnostic or treatment)^g	22 (68.8)
Surgically-inserted central venous catheter^h^h	21 (65.6)
Head/Neck/Central Nervous System surgery	8 (25)
Abdominal/Pelvic surgery	7 (21.9)
Limb surgery	2 (6.3)
Radiation Therapy	5 (15.6)
Multimodal Therapy (≥2 of chemotherapy, surgery, or radiation therapy)	20 (62.5)

n = 1 missing.

n = 2 missing.

n = 16 missing.

n = 8 missing.

Included patients who underwent chemotherapy and/or radiation therapy with or without surgery; excluded patients who underwent surgery alone.

Included corticosteroid use as part of a treatment plan (i.e. chemotherapy regimen, to decrease intracranial pressure in patients with CNS tumors); excluded intermittent corticosteroid use to treat chemotherapy-induced nausea and vomiting.

Included excisional biopsy, incisional biopsy, attempted or partial surgical resection, or complete surgical resection; excluded image-guided or interventional radiology-guided biopsy.

Excluded peripherally inserted central venous catheter.

Measures

Mean subscale/total scores for the measures for the entire cohort were as follows: BII: 3.9 ± 0.8 (GA), 3.7 ± 0.8 (BC), 4.3 ± 0.9 (RO), 3.7 ± 0.9 (VA), 3.5 ± 1.3 (BP); EDE-Q7: 2.4 ± 5 (DR), 2.7 ± 3 (W/S), 4.3 ± 3.8 (BD); MDDI: 8.7 ± 5.4 (DFS), 7.7 ± 4.3 (AI), 5.5 ± 3.4 (FI); MOET: 5.2 ± 5 (Total). Mean subscale/total scores for the measures for males were as follows: BII: 4.0 ± 0.9 (GA), 3.8 ± 0.9 (BC), 4.8 ± 0.4 (RO), 3.7 ± 0.9 (VA), 4.1 ± 0.9 (BP); EDE-Q7: 1.3 ± 2.4 (DR), 2.2 ± 3.4 (W/S), 3.6 ± 3.5 (BD); MDDI: 9.9 ± 5.9 (DFS), 5.9 ± 2.9 (AI), 6.2 ± 4.5 (FI); MOET: 5.1 ± 5.8 (Total). Mean subscale/total scores for the measures for females were as follows: BII: 3.8 ± 0.7 (GA), 3.5 ± 0.8 (BC), 3.9 ± 1.0 (RO), 3.6 ± 1.0 (VA), 3.0 ± 1.4 (BP); EDE-Q7: 3.6 ± 6.7 (DR), 3.1 ± 3.7 (W/S), 4.7 ± 4.1 (BD); MDDI: 7.4 ± 4.7 (DFS), 9.4 ± 4.8 (AI), 4.9 ± 1.5 (FI); MOET: 5.3 ± 5.9 (Total).

Patient responses

The most frequently endorsed items included the following: desire to be more physically fit (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%, 27.6%, two items on different measures), lack of body strength (37.5%), wearing loose clothing to hide one’s body (37.5%), decreased agility (34.4%), correlation between appearance and attractiveness to potential partners (34.4%), shape dissatisfaction (32.2%), self-perception of too much body fat (31.3%), shyness about being seen shirtless or in swimsuit (29%), wish [they] could get bigger (28.1%), increased fatigue compared to peers (25.8%), and self-consciousness about face/neck (25%, tie) and stomach (25%, tie). Responses to open-ended questions that illustrated the most frequently endorsed items are summarized in Table 2.

Table 2.

Most Frequently Endorsed Body Image Measure Items with Illustrative Quotes

Survey Item (Subscale, Measure)	n (%)	Illustrative Quotes
Physical Ability
I wish I was more physically fit. (Physical Competence, BII)	20 (62.5)	“I feel and look weak in my point of view.” “Now, I have a lot more limitations… I can’t just ‘rip and run’… Frustrating thinking about all of the things you were able to do before, but also gives you something to look forward to get back doing after treatments are finished.”
My body is strong enough for all I want to do.^a (Physical Competence, BII)	11 (37.5)
I am not able to move as quickly as I would like. (Physical Competence, BII)	11 (34.4)
I wish I could get bigger. (Drive for Size, MDDI)	9 (28.1)
I think I get tired more easily than my friends.^b (Physical Competence, BII)	8 (25.8)
Physical Appearance (Body Parts)
I feel self-conscious about the way my hair looks.^a,^b (Body Parts, BII)	14 (45.2)	“My hair… was something that meant a lot to me… Seeing myself balding has definitely changed my perception of my beauty. No matter how many times I hear, ‘It will just grow back, it’s just hair,’ I will look at myself differently than I used to… Every time I see my hair on my pillow or around the house it is a constant reminder of all the things I will have missed...” “Losing my facial hair has been the biggest change. Feel like I’m 13 years old again.”
I feel self-conscious about the way my face and neck look.^a (Body Parts, BII)	8 (25)	“Puffy face” “My face changed due to chemotherapy. I felt ugly.” “Very swollen in the neck… I would cover my neck all the time ’cause it was so big.”
Physical Appearance (Weight and Shape Changes)
How dissatisfied have you felt about your weight? (Body Dissatisfaction, EDE-Q7)	13 (40.6)	“When I started my cancer treatment, I started to lose weight. I lost about 30 lbs from doing chemo.” “Due to treatment, I cannot eat and have no appetite…” “I have lost muscle mass in many places.” “I feel like I’m getting fat.” “My stomach has gotten bigger from lack of exercise and lots of food intake.” “Sometimes I notice more fluctuation in weight, maybe because my weight is being checked more.”
I wear loose clothing so that people can’t see my body. (Appearance Intolerance, MDDI)	12 (37.5)
How dissatisfied have you felt about your shape? (Body Dissatisfaction, EDE-Q7)	10 (32.2)
I feel like I have too much body fat. (Appearance Intolerance, MDDI)	10 (31.3)
I am very shy about letting people see me with my shirt off or in a swimsuit.^b (Appearance Intolerance, MDDI)	9 (29)
I am very satisfied with my weight.^a,^c (General Appearance, BII)	8 (27.6)
I feel self-conscious about the way my stomach looks.^a (Body Parts, BII)	8 (25)
Value of Appearance
Whether or not someone finds you attractive depends on how you look.^a (Value of Appearance, BII)	11 (34.4)	“I feel like others (people who barely know me) don’t know what to say or do when they see me” “I do not like to show people that I am losing my hair… If I ever see anyone, I make sure to wear my wig.” “I am worried about people seeing me as the girl with cancer instead of [name.]”
How popular you are depends to a great extent on the way you look.^a (Value of Appearance, BII)	9 (28.1)

Lower scores on the BII and higher scores on the EDE-Q7 and MDDI were considered as having a negative body image.

Items are reversed before scoring.

n = 1 missing.

n = 3 missing.

BII, body image instrument; EDE-Q7, brief (seven-item) eating disorder evaluation; MDDI, muscle dysmorphic disorder inventory.

Discussion

Body image (BI) has been described as a multi-dimensional construct involving perceptions, thoughts, feelings, and behaviors related to one’s physical appearance and body function.^1,5 We selected four quantitative measures that mapped onto common BI domains based on their strong psychometric properties and previous use in age-matched community samples and/or AYA cancer survivors, including male and gender-diverse populations.^10,20–23 Notably, we excluded the Body Image Scale (BIS), a frequently used BI measure in AYA oncology patients and survivors.¹¹ As the BIS was predominantly validated in adults receiving treatment for breast, colorectal, and gynecological cancers, it was less generalizable to our cohort.¹¹

Mean subscale and total scores for the measures were within prior published normative value ranges.^10,20–24 However, certain individual items were widely endorsed, while other items were not endorsed at all. This was likely a reflection of heterogeneity within the study cohort and across the measures, but may also suggest that existing measures could be inadequate to capture the needs of this population.

Our results generated a composite of prevalent BI concerns in AYA patients on therapy. Most frequently endorsed survey items related to physical ability and appearance. Physical ability concerns included fitness, strength, agility, fatigue, and ability to increase body size. Appearance concerns included self-consciousness regarding specific body parts, and weight/shape dissatisfaction (body fat distribution and muscle mass). AYAs also endorsed items equating appearance with popularity and attractiveness to potential partners.

These data complemented results from prior studies. Hair loss, weight change, decreased muscle mass, scars, amputation, and/or sensory/motor dysfunction have all been associated with negative self-image in AYA patients on treatment and in survivorship.^5–9 In addition, on-treatment interventions that diminish permanent body changes (i.e., surgical techniques that reduce the size of visible scars) have been associated with improved BI post-treatment.⁵ Our cohort also endorsed items equating appearance with popularity and attractiveness. These results support prior published data suggesting that AYAs are diagnosed and treated for cancer during a developmental period when appearance is highly valued.⁵

The most frequently endorsed item in our cohort was a desire for increased physical fitness. In a previous qualitative study, AYA oncology patients who identified as athletes before their diagnoses reported that treatment-related changes to physical fitness were particularly distressing, as their strength and physical function were strongly linked to their pre-cancer self-image.¹² A six-week exercise-based intervention in this select patient population was associated with improved BI and with the reformulation of one’s identity,¹² suggesting that efforts to increase physical activity have the potential to improve BI.

This study builds on prior work by including a larger sample of male participants.⁵ Our findings suggest that similar BI concerns occur across sexes. Future research with larger and more diverse samples is needed to better understand potential differences across sex, race, ethnicity, and cancer type. Our results suggest that clinicians should consider discussing body changes related to treatment side effects with all AYAs. For example, anticipatory counseling regarding the impact of treatments on strength and fitness could be incorporated into discussions between AYAs and their primary oncologists when reviewing treatment plans that include chemotherapy, surgery, and/or radiation therapy.

Limitations

This study was limited by a small sample size and a heterogeneous, non-diverse cohort. Results may not be generalizable to larger populations of AYAs with cancer. In addition, this study was not adequately powered to assess differences in BI concerns based on demographic or clinical variables. Future research is needed to explore potential differences across these subpopulations. Finally, this study was not designed to assess the onset of BI concerns or changes in BI over time. Additional work is needed to understand the onset and trajectory of BI concerns in this population.

Conclusions

AYAs with neoplasms who had received antineoplastic treatment identified body image concerns related to physical ability and appearance when surveyed within six months of diagnosis. A majority of AYAs expressed a desire for increased physical fitness. These data can serve as a baseline for future work that could inform efforts to address this complex need.

Footnotes

Authors’ Contributions

P.R.D. and M.E.M. conceived and designed the study, with contribution from J.M.N. P.R.D. collected, analyzed, and interpreted the data. P.R.D. drafted the article. All authors (P.R.D., M.E.M., J.M.N., R.E.N., and J.G.P.) critically reviewed the article and provided final approval of the version to be published. All authors agree to be accountable for all aspects of the work.

Author Disclosure Statement

The authors have no conflicts of interest or disclosures.

Ethics

This research was conducted with ethics approval granted by the Cincinnati Children’s Hospital Medical Center Research Ethics Board (2022-0731).

Funding Information

This research was supported by divisional funds from the Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center.

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