Adult Survivors of Childhood Cancer
It is estimated that there are over 329,000 adult survivors of childhood cancers in the United States. However, these survivors are prone to late effects, such as problems with neuro-cognitive and psychosocial functioning. Late effects can occur up to thirty years after cancer diagnosis and affect quality of life.
Little attention has been paid to the sexual late effects, even though some organ systems (such as the hormonal, vascular, genitourinary, and neurological systems) can be seriously affected by cancer treatment. Fertility may be compromised and social and psychosexual development may be disrupted.
Because childhood cancer survivors have a higher risk of sexual dysfunction, the authors of this study aimed to describe the sexual health issues and investigate how these problems affect general health and well-being. They also wanted to see how specific treatments affected physiological functions needed for good sexual health.
Study Participants and Procedures
Participants were recruited from a long-term follow-up clinic that specialized in the care of childhood cancer survivors. The clinic was associated with Project REACH (Research Evaluating After Cancer Health), a cohort study that assesses psychosocial and medical outcomes in cancer survivors. Two-hundred ninety-one participants aged 18 and over completed questionnaires that evaluated sexual health, health-related quality of life, and psychological distress.
Main Outcome Measures
Demographics and Treatment-Specific Variables
Patient demographics and treatment information came from both the study questionnaires and chart review. Data on treatments that may have affected pubertal development, fertility, and/or sexual function were also collected, along with information on any chemotherapy, radiation therapy, and surgical procedures.
Researchers used five items comprising the general sexual functioning subscale of the Swedish Health-Related Quality of Life Survey (Swed-QUAL) to assess sexual functioning. Patients rated their sexual functioning on a four-point scale: completely agree, partly agree, partly disagree, and completely disagree. Participants were considered “cases” if they answered at least two Swed-QUAL items with “completely agree” or “partly agree.” This designation indicated significant sexual dysfunction.
Health-Related Quality of Life
The Short-Form 12 (SF-12) was used to assess emotional and physical health functioning. Eight subscales were involved: energy/fatigue, bodily pain, physical functioning, role-physical, general health, social functioning, role-emotional, and mental health.
Researchers used the Brief Symptom Inventory-18 (BSI-18) to evaluate psychological distress. Subscales included depression, anxiety, and somatization. A total psychological distress summary score was also given.
Descriptive statistics were used to describe the demographic, treatment, and sexual health aspects of the participants. Patients who chose two or more items on the Swed-QUAL indicative of significant impairment in sexual function (“cases”) were compared with “noncases” who selected fewer than two items on the Swed-QUAL. Gender as a predictor of case classification was also considered.
Demographics, Classification Criteria, and Case Characteristics
Participants ranged in age from 18 to 57 years with an average age of 27 years. They had a variety of cancer diagnoses, but the most common were brain tumors, lymphoma, leukemia, and sarcoma.
Overall, the most common sexual problems reported were a lack of sexual interest, difficulties enjoying sex, and difficulties being aroused. Nineteen percent of the men had problems with erections and 29% of the women had orgasm difficulties.
Twenty-nine percent of the participants were classified as sexual dysfunction cases.
When cases and noncases were compared, the researchers found the following:
- Cases were significantly older than noncases (30.8 years vs. 25.4 years).
- Women were likely to be classified as cases than men (37% vs. 20%).
Specific cancer diagnosis and age at diagnosis did not appear to be related to sexual functioning.
Survivors with sexual dysfunction reported higher levels of anxiety and depression on the BSI-18 and poorer functioning on all subscales of the SF-12 except for bodily pain. Also, those with sexual dysfunction tended to have significantly low scores for health-related quality of life on the scales of physical functioning, role-physical, energy, social functioning, role-emotional, and mental health. These results were consistent in gender-specific analyses.
The study results “highlight the importance of attending to sexual dysfunction in this vulnerable group of young adults,” the authors wrote. Even though childhood cancer survivors are known to have chronic treatment-related health conditions, their sexual functioning is often overlooked.
This study used a stricter definition of sexual dysfunction; yet, childhood cancer survivors were still three times more likely to have sexual problems when compared to general population studies of young adults under age 40.
Of the survivors that met the criteria for sexual dysfunction, 65% marked three or more discrete sexual problems on the Swed-QUAL.
Factors Associated with Sexual Dysfunction
Similar to studies of the general population, this study’s female participants were twice as likely as male participants to have “marked sexual impairment.” In both populations, this could be because women tend to have more stress and anxiety related to sex and relationships. For female childhood cancer survivors, the late effects of treatment, including post-traumatic stress and changes in body image, could also play a role. In addition, treatment’s effects on menopausal status could bring more sexual difficulties.
Age was also related to sexual dysfunction this study. Survivors with sexual dysfunction tended to be older than their peers without dysfunction. The average age of survivors with dysfunction (30 years) was lower than ages reported in the general population. The authors acknowledged that sexual problems can increase with age, but also noted that late effects of cancer treatment may affect systems related to sexual functioning.
The authors were surprised to find that specific treatments did not impact physiological systems necessary for normal sexual function, as they might have in adults. “This may reflect limitations in the way the treatments and treatment combinations were measured, but it may also reflect differences in the way cancer therapies affect sexual function in adults and children,” they wrote. In adults, the effects of treatment could be more direct. But in children, treatment may interfere with maturational processes and cause problems later. Also, treatments could affect organ systems, even those not usually related to sexual function, in subtle ways.
Participants with significant sexual dysfunction tended to have higher rates of anxiety and depression. Men with dysfunction were more likely to report worse physical functioning on the SF-12. However, women with dysfunction were more likely to report worse emotional functioning on the BSI-18. These results contrast previous research, but highlight the need for healthcare providers to address sexual concerns in all childhood cancer survivors, particularly those reporting physical difficulties or emotional distress.
The authors acknowledged the following limitations:
- The Swed-QUAL is a validated, but brief measure of sexual function. An in-depth assessment that analyzes more symptoms and sexual-dysfunction-related distress would be helpful.
- Because this study did not have a normative comparison group, previously reported normative data was used. Such data may have been measured differently. While the authors were confident in their results, they suggested that future research use groups of childhood cancer survivors and controls.
- Findings between sexual dysfunction and reports of emotional and physical impairment were correlational, not causal. Future research could address any causal aspects.
Implications and Future Directions
“Our results underscore the stark reality that a significant number of young adult survivors of childhood cancer report the presence of multiple sexual problems and need effective intervention,” the authors wrote. They suggested that clinicians assess sexual health in this population broadly. Focusing solely on sexual issues caused by specific cancer treatments would be too narrow.
Future research may examine the barriers to addressing sexual dysfunction in childhood cancer survivors and its relationship to fertility.
It could be helpful for clinicians to consider how physical and emotional problems, along with medical late effects, might affect sexual functioning for childhood cancer survivors. Treating such problems could be effective in alleviating sexual issues.
Comparing sexual dysfunction of childhood cancer survivors with those who were diagnosed during adolescence could be another