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.

Measuring genetic knowledge: a brief survey instrument for adolescents and adults.

Basic knowledge of genetics is essential for understanding genetic testing and counseling. The lack of a written, English language, validated, published measure has limited our ability to evaluate genetic knowledge of patients and families. Here, we begin the psychometric analysis of a true/false genetic knowledge measure. The 18-item measure was completed by parents of children with congenital heart defects (CHD) (n = 465) and adolescents and young adults with CHD (age: 15-25, n = 196) with a mean total correct score of 12.6 [standard deviation (SD) = 3.5, range: 0-18]. Utilizing exploratory factor analysis, we determined that one to three correlated factors, or abilities, were captured by our measure. Through confirmatory factor analysis, we determined that the two factor model was the best fit. Although it was necessary to remove two items, the remaining items exhibited adequate psychometric properties in a multidimensional item response theory analysis. Scores for each factor were computed, and a sum-score conversion table was derived. We conclude that this genetic knowledge measure discriminates best at low knowledge levels and is therefore well suited to determine a minimum adequate amount of genetic knowledge. However, further reliability testing and validation in diverse research and clinical settings is needed.

Friendships and social interactions of school-aged children with migraine.

We set out to evaluate the friendships and social behaviour of school-aged children with migraine. Concern exists regarding the impact of paediatric migraine on daily activities and quality of life. We hypothesized that children with migraine would have fewer friends and be identified as more socially sensitive and isolated than comparison peers. Sixty-nine children with migraine participated in a school-based study of social functioning. A comparison sample without migraine included classmates matched for gender, race and age. Children with migraine had fewer friends at school; however, this effect was limited to those in elementary school. Behavioural difficulties were not found. Middle-school students with migraine were identified by peers as displaying higher levels of leadership and popularity than comparison peers. Concern may be warranted about the social functioning of pre-adolescent children with migraine; however, older children with migraine may function as well as or better than their peers.

Gender differences in depressive symptoms in adolescence: comparison of national samples of clinically referred and nonreferred youths.

Gender differences in depressed mood, a syndrome of mixed anxiety-depression, and an analogue of major depressive disorder were compared in parents' and adolescents' reports in 2 large, demographically matched national samples of clinically referred and nonreferred adolescents. Referral status accounted for the greatest share of the variance in these problems. Gender differences were moderate in size and consistent in referred youths, with referred girls scoring higher than referred boys on all measures, whereas gender differences in nonreferred adolescents were either nonsignificant or small in magnitude. Gender differences were also larger in magnitude in adolescents' self-reports than in parents' reports. The interaction of age and gender was nonsignificant in all analyses. Implications for understanding the extent of gender differences in adolescents' depressive symptoms are highlighted.

Adolescents' knowledge of human papillomavirus and cervical dysplasia.

STUDY OBJECTIVE: This study examined adolescents' knowledge of human papillomavirus (HPV) and cervical dysplasia (CD). Factors associated with knowledge and self-reported change in health-related behaviors were identified. DESIGN: Interviews were conducted at an average of 2.5 years following the diagnosis of HPV/CD. Medical charts were reviewed. SETTING: The study was conducted at a university-based adolescent dysplasia clinic. PARTICIPANTS: Fifty females, ages 15-23 participated in the study: 88% African-American, 12% Caucasian. RESULTS: On average, participants responded correctly to 86% of the questions regarding HPV/CD. However, the following key points were routinely missed: 52% did not know cigarette smoking increased the risk for cervical cancer; 42% believed that HPV/CD was always symptomatic; and 22% did not know condoms decreased the transmission of HPV. According to participants, their health care provider explained the diagnosis and treatment of HPV/CD using words they understood "some" or "most of the time." Higher academic skills significantly correlated with greater knowledge of HPV/CD. Forty-one percent of participants with a smoking history reportedly increased their smoking since the diagnosis, and only 40% used condoms "most of the time." However, 90% had maintained or increased their frequency of Pap tests. CONCLUSIONS: Adolescent girls had knowledge of most factors related to HPV/CD, but many did not understand the risks of cigarette smoking and failure to use condoms. To improve understanding and compliance, health care providers should tailor educational strategies to the functional level of adolescents.