A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study

Abstract

Adolescent and young adult (AYA) cancer survivors (18–39 years at diagnosis) often experience negative body changes such as scars, amputation, and disfigurement. Understanding which factors influence body image among AYA survivors can improve age-specific care in the future. Therefore, we aim to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA cancer survivors (5–20 years after diagnosis). A population-based cross-sectional cohort study was conducted among AYA survivors (5–20 years after diagnosis) registered within the Netherlands Cancer Registry (NCR) (SURVAYA-study). Body image was examined via the EORTC QLQ-C30 and QLQ-SURV100. Multivariable logistic regression models were used. Among 3735 AYA survivors who responded, 14.5% (range: 2.6–44.2%), experienced a negative body image. Specifically, AYAs who are female, have a higher Body Mass Index (BMI) or tumor stage, diagnosed with breast cancer, cancer of the female genitalia, or germ cell tumors, treated with chemotherapy, using more maladaptive coping strategies, feeling sexually unattractive, and having lower scores of health-related Quality of Life (HRQoL), were more likely to experience a negative body image. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future research could help to identify when and how this support for AYA survivors can be best utilized.

Actionability of Synthetic Data in a Heterogeneous and Rare Healthcare Demographic; Adolescents and Young Adults (AYAs) with Cancer

“…Data from the SURVAYA study 25,26 (clinicaltrials.gov NCT05379387) was re-used with permission from the sponsor. SURVAYA was a population-based cross-sectional cohort study amongst AYA cancer patients registered in the Netherlands Cancer Registry (NCR).…”

“…The principal instruments in SURVAYA were validated health-related Quality of Life (QoL) questionnaires 27–30 , which were linked to clinical attributes from the NCR. Details are provided in the original study publications 25,26 . In total, there were 950 variables, some of which contained unstructured text.…”

“…We limited ourselves only to variables selected by Saris et al (2022) for logistic regression models of negative body image among AYAs 25 . As per the original research, participants that had filled in less than half of the body image-related questionnaire items were excluded.…”

“…Utility was examined by checking if a given SD reproduced the same logistic regression coefficients as the original paper by Saris et al 25 , for generative architectures that had been trained using all of 3735 real subjects. For each generator, we selected an SD output size of 3100 for the comparison of odds ratios (ORs) with Saris et al The regression analyses were conducted using Python libraries; Statsmodels for regression analysis and scikit-learn for an optimism-adjusted (through random under-sampling) concordance-statistic as area-under receiver-operator curve score.…”

“…Cancer incidence is low in this demographic (only 1 million new cases annually worldwide), making this group difficult to study by conventional methods 1 . Though this group experiences the burden of cancer in a starkly different way compared to paediatric and elderly patients 25,26 , AYAs are predominantly treated in either paediatric or adult care institutes. Evidence to inform personalised age-specific patterns of cancer care is very limited for AYAs, hence our interest in understanding how SD might potentially be used to address AYA health-related hypotheses.…”