Fertility-related knowledge and reproductive goals in childhood cancer survivors: short communication.

STUDY QUESTION: Do young adult survivors of childhood cancer know their fertility status, in the context of their parenthood goals and screening for gonadal functioning? SUMMARY ANSWER: While 80% of survivors (who were without children) wanted children in the future, most did not know their fertility status, and screening for gonadal functioning was underutilized. WHAT IS KNOWN ALREADY: Survivors of childhood cancer are at risk for infertility, but fertility counseling and assessment are underutilized. Separate studies indicated that survivors' fertility-related knowledge is poor and that they often wanted to have children. Yet, studies have not investigated the intersection of both issues, as well as potential distress if parenthood goals are not met. STUDY DESIGN, SIZE, DURATION: Young adult male and female survivors of childhood cancer (N = 149) completed cross-sectional surveys, and data for those without children (n = 105, 70.5%) are presented here. PARTICIPANTS/MATERIALS, SETTING, METHODS: Participants were 20-40 years old (M = 26.5), diagnosed 5-33 years prior to study participation, and completed questionnaires online. Knowledge of fertility status, parenthood goals, and potential distress if survivors were unable to have children were assessed. Medical records were reviewed for hormone levels as indicators of screening for gonadal functioning. MAIN RESULTS AND THE ROLE OF CHANCE: Most survivors (n = 81; 77.1%) did not know their fertility status, while over 80% (n = 89) wanted children (neither aspect varied by socio-demographic/cancer-specific factors). Two-thirds of survivors indicated they would be distressed if parenthood goals remained unfulfilled; especially female (versus male, t = 2.64; P = 0.01) or partnered (versus single, t = -3.45; P < 0.001) survivors. Forty survivors (38.1%) had documented assessments of gonadal functioning, of which 33 (82.5%) reported not knowing their fertility status. LIMITATIONS, REASONS FOR CAUTION: Relevant risk factors may have not been identified owing to limited sample size and missing treatment information. The underutilization of screening for gonadal functioning needs further exploration in other pediatric centers. WIDER IMPLICATIONS OF THE FINDINGS: Most adult childhood cancer survivors want to become parents, but do not know their fertility status, which could cause significant psychological distress. Healthcare providers should continuously address fertility among survivors, but more research is needed on how to implement routine fertility counseling and/or testing. STUDY FUNDING/COMPETING INTEREST(S): This study was funded by the Research Institute at Nationwide Children's Hospital (V.L.) and Dutch Cancer Society (RUG2009-4442, M.A.T.). All authors have no conflict of interest to declare.

Long-term functional outcomes and quality of life in adult survivors of childhood extremity sarcomas: a report from the St. Jude Lifetime Cohort Study.

PURPOSE: This study compared measured physical performance, health-related quality of life (HRQOL), and social role attainment between extremity sarcoma survivors and controls, and evaluated associations between disease and treatment exposures, health conditions, and performance measures. METHODS: Survivors of extremity sarcoma from the St. Jude Lifetime cohort and controls frequency matched by age-, sex-, and race completed physical performance testing and questionnaires. Survivors with Z-scores on outcome measures ≤ -2.0 SD (compared to controls) were categorized with severe impairment/limitation. RESULTS: Among 206 survivors (52.4 % male median age 36 years (range 19-65)), 37 % had low relative lean mass, 9.7 % had an ejection fraction <50 %, 51.5 % had diffusion capacity for carbon monoxide <75 %, 27.7 % had sensory and 25.2 % motor neuropathy, and 78.2 % had musculoskeletal complications. Severe impairments/limitations were present among ≥25 % of survivors on fitness, balance, and physical HRQOL measures, and among ≥15 % on strength and activity of daily living measures. Lower extremity tumor location (OR 8.23, 95 % CI 2.54-26.67, P value 0.0004) and amputation (OR 8.07, 95 % CI 3.06-21.27, P value <0.0001) were associated with poor fitness. Poor fitness was associated with increased odds of scoring <40 on the SF-36 physical component summary (OR 4.83, 95 % CI 1.95-11.99, P value 0.001) and role-physical subscale (OR 3.34, 95 % CI 1.33-8.43, P value 0.01). Survivors and controls had similar rates of marriage, independent living, employment, and college attendance. CONCLUSIONS: Extremity sarcoma survivors experience high rates of physical impairment and report lower than expected physical HRQOL. However, they are as likely as peers to be married, live independently, be employed, and attend college. IMPLICATIONS FOR CANCER SURVIVORS: Follow-up for extremity sarcoma survivors should include assessment of need for further orthopedic care and rehabilitation to address cardiopulmonary and musculoskeletal health.