1 INTRODUCTION

A cancer diagnosis during childhood and its intensive treatment requiring frequent hospitalizations and invasive procedures raises a broad range of medical and psychosocial challenges for the affected children.¹ Despite steadily increasing survival rates, reaching 85% in Switzerland,² childhood cancer survivors have a lifelong increased risk of chronic health conditions.^{3, 4} The treatment's immediate impact on the body, visible and invisible late consequences such as scars, amputations or endocrine problems such as growth hormone deficiency may interfere with survivors’ psycho-sexual development and body image.^5-7 Growth hormone deficiency is a common consequence of childhood cancer treatment and has been previously shown to impair linear growth, reduce cardiac muscle mass and increase fat mass.⁸ The cancer experience may further disrupt social interactions with peers, and survivors may perceive their bodies as something that has failed them or as a source of pain.⁹ A healthy body image is of particular importance during adolescence, which is a critical developmental period characterized by many challenges such as puberty, establishing autonomy, first partner relationships and realization of own sexuality.^10-12

Body image is a complex psychological construct including body-related self-perceptions and self-attitudes, such as beliefs, feelings and behaviours.^{13, 14} Qualitative studies suggest negative effects of childhood cancer on survivors’ body image.^15-19 However, a systematic review from 2009 concluded that there is no consistent evidence regarding differences in body image between children and adolescents with cancer and healthy controls.¹³ This review included seven studies focusing on children (<12 years old), 19 on adolescents (13–19 years old), two on children and adolescents, and three on adolescents and young adults (>20 years old).¹³ However, evidence from quantitative population-based studies including adolescent childhood cancer survivors and a healthy comparison group is limited and it remains unclear how chronic health conditions affect the body image of long-term survivors. Understanding the impact of childhood cancer on the body image of adolescent survivors is critical to guide adequate support strategies and to mitigate adverse consequences on survivors’ future quality of life and psychosocial well-being.^{20, 21} In this study, we therefore aimed to compare the body image between adolescent cancer survivors and their siblings and to determine whether survivors’ body image is associated with socio-demographic characteristics, clinical characteristics and chronic health conditions.

2 METHODS

3 RESULTS

Of 882 eligible survivors aged 16–19 years, 794 received the questionnaire (Figure 1). Of those, 543 completed the questionnaire (response rate 68%). We excluded 39 (5%) survivors with missing information on body image and finally included 504 (64%) in the analysis. The final sibling population consisted of 136 participants. Most survivors and siblings were from a German-speaking region and did not report a migration background (Table 1). Thirty percent of survivors and siblings reported that they currently have a boyfriend or girlfriend. Among survivors, median age at diagnosis was 5.8 years (interquartile range [IQR]: 2.6–9.9), median time since diagnosis 11.6 years (IQR: 8.2–14.8), and median age at study 17.7 years (IQR: 16.8–18.6). The most frequent cancer diagnoses were leukaemia (32%) and CNS tumours (17%). Clinical characteristics were similar between participating and non-participating survivors (Table S1).

Chronic health conditions were reported by 354 (70%) survivors, with 141 (28%) reporting one condition and 213 (42%) more than two conditions. Neurological (33%), pulmonary (24%), renal and digestive (23%) and musculoskeletal conditions (23%) were most frequently reported (Table 2). The most commonly reported symptoms within these conditions were balance disorders (15%), asthma (12%), chronic constipation or diarrhoea (9%) and prolonged pain in bones or joints (9%). Growth hormone deficiency was reported by 49 (10%) survivors.

3.1 Body image in adolescent childhood cancer survivors and their siblings

Survivors and siblings reported overall comparable body image (Figure 2; all p-values from chi-square tests and ordered logistic regression >.05). Few survivors (4.6%) and siblings (2.9%) completely disagreed with the statement I am satisfied with my body image. Slightly more survivors than siblings completely agreed with the statements I would like to change a few things regarding my body (28.9% vs. 24.0%) and I would like to change many things regarding my body (7.6% vs. 2.5%).

4 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 HSCT 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 the few population-based studies investigating the body image of adolescent survivors of childhood cancer. 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 quantitative and qualitative studies and patients on active treatment.¹³

Similar to a recent study from Sweden including adult childhood cancer survivors³⁵ and findings in healthy adolescents in the general population of Switzerland,²⁹ 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.¹⁴ Societal pressures and attractive body image expectations may be particularly pronounced in Western cultures.²¹ 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. This may be explained by the subjective nature of body image perceptions and satisfaction that are influenced by societal or cultural norms and environmental experiences.¹⁴

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.³⁶ Physical side effects and toxicity may occur at various stages of HSCT treatment from intensive pretransplantation therapy, conditioning regimens, chronic immunosuppression, and acute or chronic graft-versus-host disease (GvHD).³⁷ Transplanted 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.³⁷ 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 mild chronic conditions also, 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, 15-19} However, in terms of long-term psychosocial adjustment, Thompson and Wiener argue that adolescents’ subjective perception may be more important than their actual appearance.¹⁴ Further quantitative and longitudinal research using consistent and validated body image measures is needed to further elaborate on this.

The most common endocrine condition in our study included growth hormone deficiency that may cause short stature, and hypo- and hyperthyroidism leading to hormonal imbalance.³⁸ 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.³⁸ Endocrine 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 healthcare 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.³⁹ 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 distress²¹ and sexual dysfunction²⁰ 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.⁴⁰ 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.²¹ 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.⁴¹ 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 background,³² 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.⁴² Survivors 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 the cultural and societal context. 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.⁴³ In our study, we covered 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.^{25, 26}

In conclusion, it is encouraging that the body image of adolescent childhood cancer survivors was comparable to healthy siblings. However, female survivors, survivors treated with HSCT or a high burden of chronic health conditions are at risk of body image concerns during adolescence. Increased awareness among clinicians, discussing body image aspects during regular follow-up care, and offering targeted psychosocial support could mitigate such concerns.

CONFLICT OF INTEREST

The authors declare that there is no conflict of interest.