Discussion

This nationwide population-based study showed that the body image of adolescent survivors of childhood cancer was overall comparable to that of their healthy siblings. Female survivors, survivors treated with haematopoietic stem cell transplantation, and those with a higher burden of chronic health conditions had a more negative body image. This was particularly pronounced for survivors suffering from musculoskeletal or endocrine conditions.
This is one of few population-based studies investigating the body image of adolescent survivors of childhood cancer. Body image is a complex psychological construct including body-related self-perceptions and self-attitudes such as beliefs, feelings, and behaviours.19 Although cancer and treatment-related changes in appearance and the high prevalence of physical late consequences after successful treatment would be expected to adversely interfere with survivors’ body image,4 our study showed that the body image of adolescent survivors was overall comparable to that of their healthy siblings. This is in line with a study from the Netherlands including adult survivors9 and a previous systematic review including also studies with patients on active treatment.19Evidence from other studies including adolescent long-term childhood cancer survivors is limited by lack of population-based sampling approaches and restrictions to certain cancer types.35-37
Similar to a recent study from Sweden including adult childhood cancer survivors20 and findings in healthy adolescents in the general population of Switzerland,28 we found that female survivors were more likely to have a more negative body image than male survivors. This confirms the extensive literature on sex differences in body image indicating that females are more likely to negatively self-evaluate their appearance and report higher levels of body image dissatisfaction than men.34 Societal pressures and attractive body image expectations may be particularly pronounced in Western cultures.14 Our findings indicated that survivors from French or Italian-speaking Switzerland were more likely to report a negative body image than survivors from German-speaking parts. However, we are not aware of other studies reporting on within country differences in body image and hypothesize that this may be explained by differential reporting behaviour rather than underlying differences in body image.
We further found survivors treated with HSCT were more likely to have a negative body image. HSCT is often used for high-risk disease or as second-line treatment.38 Physical side effects and toxicity may occur at various stages of HSCT treatment from intensive pre-transplantation therapy, conditioning regimens, chronic immunosuppression, and acute or chronic graft-versus-host disease (GvHD).39Transplanted survivors may also experience unique late consequences such as delayed immune reconstitution leading to recurrent infections and chronic dermatologic conditions as a result of chronic GvHD of the skin that may adversely interfere with their body image in the long-term.39 However, our study included only 30 survivors treated with HSCT and more research is needed to elucidate the underlying mechanisms.
Chronic health conditions were an important determinant of a more negative body image in our study. Even though we included also mild chronic conditions, we found that the more conditions adolescent survivors experienced, the higher was their risk to report a negative body image. This was particularly pronounced for survivors suffering from musculoskeletal or endocrine conditions. Musculoskeletal conditions such as prolonged pain in bones or joints, scoliosis, or reduced flexibility of joints are visible disabilities and likely to interfere with survivors’ everyday life compared to non-visible conditions such as cardiovascular or pulmonary diseases. Indeed, qualitative research indicated that childhood cancer survivors felt negatively about their bodies because of the visible effects of the treatment such as hair loss, weight gain, scarring, or amputations.9,15-18The most common endocrine conditions in our study included growth hormone deficiency that may cause short stature, and hypo- and hyperthyroidism leading to hormonal imbalance.40 Such conditions may directly interfere with survivors’ body image and psycho-sexual development particularly during adolescence. Indeed, we found a strong association between growth hormone deficiency and a more negative body image. Treatment with recombinant human growth hormones significantly improves height in children with growth hormone deficiency, however, affected children may still not achieve their genetic potential.40Endocrine problems and hormonal imbalances may further interfere with pubertal development. Reduced breast development may to some extent also explain the more negative body image of female survivors compared to male survivors. Collectively, our findings highlight that health care professionals should be aware of the risk of body image concerns in survivors with a high burden of chronic health conditions and therefore address this problem during follow-up care.41 Additional support and counselling by an interdisciplinary team involving psychologists may help affected survivors to reduce body image concerns.
This is of particular importance as an adverse body image has been previously shown to be associated with psychological distress14 and sexual dysfunction13 in childhood cancer survivors. In turn, this may affect survivors’ involvement in intimate relationship and family planning and their quality of life in the long-term.9 While somatic health conditions after childhood cancer are usually well cared for during long-term follow-up care, this may be less standardized for aspects related to mental health such as body image concerns.42 In the literature, most body image interventions such as cognitive behavioural therapy, education-based intervention, strength training, and physical exercise have been implemented among survivors of breast cancer and it remains unclear whether such approaches would be efficacious in the childhood cancer survivor population.14 A promising approach is the recently established Fex-Can Childhood project that includes an interventional approach to advance knowledge in the areas of sexual function and fertility-related distress after childhood cancer including body image as a secondary outcome.43 If proven efficacious and successfully implemented in survivorship care, such an approach could be particularly beneficial for adolescent survivors with body image concerns and may contribute to mitigate adverse long-term consequences.
A limitation of our study is the relatively small number of siblings. Sibling comparisons are valuable as they offer a possibility to control for possible confounders such as socio-economic background31 and we further maximized comparability by standardizing for age at study and sex. However, our study may have lacked the statistical power to detect small differences between groups. Another limitation may be reporting bias due to social desirability.44Survivors may have reported more favourable outcomes and our study therefore may have underestimated the implications of the cancer diagnosis and related chronic health conditions on survivors’ body image. However, this may to some extent also apply to sibling comparisons. Finally, agreement with the statement I would like to change a few things regarding my body should not necessarily be interpreted as an adverse outcome but should be seen in light of personal choices such as the wish to build up muscles for example. A strength of our study is the nationwide and population-based sampling approach and the high response rate that supports the representativeness of our study population. We have previously shown that non-response bias may only play a minor role in Swiss childhood cancer survivor studies.45 In our study, we cover all childhood cancer types and treatment periods from 1976 to 2010. Another strength refers to the use of high quality clinical information based on medical records from the SCCR and the assessment of chronic health conditions based on standardized questions used in other childhood cancer survivor studies.24,25
In conclusion, it is encouraging that the body image of adolescent childhood cancer survivors was comparable to healthy siblings. However, a subgroup of survivors with a high burden of chronic health conditions might develop a negative body image during adolescence. These survivors could benefit if health care professionals addressed such concerns in a standardized way during follow-up care and offered psycho-social support.