An exploratory study of sleep habits in school-aged survivors of retinoblastoma.

OBJECTIVE/BACKGROUND: Retinoblastoma is an ocular cancer diagnosed in early childhood. Previous research has indicated the impact of cancer treatment on sleep, but little is known about how sleep is impacted among survivors of retinoblastoma. The current study aimed to describe sleep habits of school-age survivors of retinoblastoma, to examine associations between sleep and quality of life, and to examine concordance between parent and child reports of sleep habits. PATIENTS/METHODS: Sixty-nine survivors of retinoblastoma (Mage = 10.89, SD = 1.07, 50.7% female; 56.5% unilateral disease) and their caregivers participated, providing information on both self- and parent-reported sleep habits, quality of life, and demographic data. RESULTS: Greater sleep concerns than national norms were reported by parents (bedtime resistance (t(58) = 2.69, p = .009), greater sleep onset delay (t(66) = 2.46, p = .017), shorter sleep duration (t(57) = 2.12, p = .038), increased daytime sleepiness (t(53) = 6.45, p= <.001)) and children (sleep location (t(61) = 2.39, p = .02), restless legs syndrome (t(62) = -2.21, p = .03), parasomnias (t(64) = 19.19, p=<.001)) . Both children and parents of children who received enucleation endorsed greater sleep concerns across several domains (e.g., electronic use before bed, sleep-disordered breathing). Child- and parent-reported sleep concerns were generally associated with decreased quality of life. Finally, child- and parent-report of sleep habits appeared generally consistent. CONCLUSIONS: Survivors of retinoblastoma experience sleep difficulties. As such, assessment and targeted intervention is important to mitigate any effects on quality of life. Future research should examine sleep habits of survivors of retinoblastoma across cultures and developmental periods.

The posterior fossa syndrome questionnaire: using science to inform practice.

INTRODUCTION: Up to 34% of patients with medulloblastoma develop posterior fossa syndrome (PFS) following brain tumor resection and have increased risk of long-term neurocognitive impairments. Lack of agreement in conceptualization and diagnosis of PFS calls for improvements in diagnostic methods. The current study aimed to describe psychometric properties of a new posterior fossa syndrome questionnaire (PFSQ). METHODS: The PFSQ was informed by prior research and developed by a multidisciplinary team with subject matter expertise. Participants (N = 164; 63.4% Male; 78.7% White; Mage at diagnosis = 10.38 years, SD = 5.09, range 3-31 years) included patients with newly diagnosed medulloblastoma enrolled in the SJMB12 clinical trial. Forty-four patients (26.8%) were classified as having PFS based on attending physician's post-surgical yes/no report. A PFSQ was completed by a neurologist within 2 weeks of coming to St. Jude Children's Research Hospital for adjuvant treatment, irrespective of suspicion for PFS. RESULTS: PFSQ items ataxia (100.00%), dysmetria (95.45%), and speech/language changes (79.55%) were most sensitive. However, ataxia (26.50%) and dysmetria (46.61%) demonstrated low specificity. Speech/language changes (81.36%), mutism (95.76%), orofacial apraxia (98.29%) and irritability (96.61%) had high specificity. A principal component analysis found four components: (1) speech/language changes, (2) apraxias (including mutism), (3) motor/oromotor, and (4) emotional lability. CONCLUSIONS: The PFSQ is a dimensional diagnostic approach that can be used to improve diagnostic consistency across clinical and research groups to help accelerate understanding of PFS etiology, identify surgical correlates of risk, predict long-term impairments, and develop targeted interventions. Additional measure validation, including correlation with symptom resolution, is required.

A Latent Profile Analysis of Sleep, Anxiety, and Mood in Youth with Craniopharyngioma.

Craniopharyngioma is a histologically benign brain tumor that arises in the suprasellar region affecting critical neurovascular structures including the hypothalamic-pituitary-adrenal axis and optic pathways. Children with craniopharyngioma often experience excessive daytime sleepiness (EDS) which may be compounded by anxiety and depression. The current study investigated disparate sleep profiles to better understand psychological adjustment among children diagnosed with craniopharyngioma. METHOD: Actigraphs recorded nightly sleep data, including measures of sleep onset latency (SOL) and wake after sleep onset (WASO), in a cohort of 80 youth between the ages of 2 and 20 years (median age = 9). Parent reports of behavioral and emotional functioning were included in the analysis. A latent profile analysis examined disparate sleep profiles, and a multinomial logistic regression examined differences of anxiety and depression among the sleep profiles. RESULTS: The latent profile analysis revealed three sleep profiles: "healthy sleepers" (68.8%), "night wakers" (21.3%), and "prolonged onset sleepers" (10.0%). Contrary to expectations, sleep profiles were not associated with daytime anxiety (ß = 2.26-4.30, p > .05) or depression (ß = -5.87-4.74, p > .05). CONCLUSIONS: Youth with craniopharyngioma demonstrate poor sleep and EDS. Those with delayed SOL and prolonged WASO are particularly vulnerable to disrupted nighttime sleep, which may significantly compound EDS. Disrupted sleep was not associated with anxiety or depression, which may be related to the overall poor sleep and daytime sleepiness or to timing, as patients were early in their treatment course. Further study should evaluate the factors underlying sleepiness and daytime function in patients with craniopharyngioma.

Do Anxiety and Mood Vary among Disparate Sleep Profiles in Youth with Craniopharyngioma? A Latent Profile Analysis.

INTRODUCTION: Craniopharyngioma is a histologically benign brain tumor that arises in the suprasellar region affecting critical neurovascular structures including the hypothalamic-pituitary-adrenal axis and optic pathways. Children with craniopharyngioma often experience excessive daytime sleepiness which may be compounded by anxiety and depression. The current study investigated disparate sleep profiles to better understand psychological adjustment among children diagnosed with craniopharyngioma. Method: Actigraphs recorded nightly sleep data, including measures of sleep onset latency and wake after sleep onset, in a cohort of 80 youth between the ages of 2 and 20 years (median age = 9). Parent reports of behavioral and emotional functioning were included in the analysis. A latent profile analysis examined disparate sleep profiles, and a multinomial logistic regression examined differences of anxiety and depression among the sleep profiles. Results: The latent profile analysis revealed three sleep profiles: "variable sleepers" (48.3%), "consistently poor sleepers" (45.4%), and "night wakers" (6.4%). Consistently poor sleepers had lower rates of anxiety (g = .76; p = .009) and depression (g = .81; p = .003) than variable sleepers and had significantly lower rates of anxiety than night wakers (g = .52; p = .05); all other differences were nonsignificant (ps > .05). Discussion: Youth with craniopharyngioma who have nightly variations in sleep may have worse psychological functioning than those with more consistent, albeit poor, sleep patterns. Patients with craniopharyngioma who report variable sleep should be assessed for anxiety and depression to prevent and intervene on emotional difficulties that may be reciprocally related to sleep.

Neurocognitive functioning in long-term survivors of pediatric hematopoietic cell transplantation.

Survivors of pediatric hematopoietic cell transplantation (HCT) are at risk for impairment in cognitive and academic function. Most research to date has focused on the first years following transplant, and less is known about the long-term effects. We examined global and specific neurocognitive functioning in long-term (>5 years post HCT) survivors in comparison to both normative data and a sample of demographically similar healthy peers. A comprehensive battery of neurocognitive measures was obtained from 83 long-term survivors and 50 healthy comparisons. Analyses were conducted to assess for differences in neurocognitive functions between survivors, normative means, and healthy comparisons, and to examine the impact of medical and demographic variables on neurocognitive performance. Survivors' performance was within the Average range across most measures, although significantly lower than both test norms and healthy comparisons on several measures. Despite generally intact neurocognitive functioning in the survivor group as a whole, survivors who experienced graft-vs.-host disease demonstrated slower processing speed and weaker verbal learning. Use of total body irradiation was not associated with any performance-based measure of neurocognitive functioning. Although subgroups of patients may be at relatively higher risk of neurocognitive impairment, the long-term neurocognitive impact for most survivors is relatively small.

Parent recommendation to bank sperm among at-risk adolescent and young adult males with cancer.

BACKGROUND: Adolescent and young adult (AYA) males newly diagnosed with cancer are often faced with making quick decisions about whether to cryopreserve ("bank") sperm prior to treatment initiation. Given that parental influence is crucial among young patients, the present study examines the prevalence of and factors associated with parent recommendation to bank sperm. PROCEDURE: Parents of 13- to 21-year-old males newly diagnosed with cancer and at risk for infertility secondary to impending gonadotoxic treatment completed questionnaires typically within one week of treatment initiation. Medical and sociodemographic data, communication factors, and psychological factors were considered in a logistic regression model of parent report of parental recommendation to bank sperm (yes/no). RESULTS: Surveys from 138 parents (70.3% female) of 117 AYA males (mean age = 16.1 years, SD = 2.0) were analyzed. Over half of parents recommended banking to their sons (N = 82; 59.4%). Parents who received a provider recommendation to bank sperm (odds ratio [OR] = 18.44, 95% confidence interval [CI], 4.20-81.01, P < 0.001) or who believed in the benefits of banking (OR = 1.22, 95% CI, 1.02-1.47, P = 0.03) were significantly more likely to recommend sperm banking. CONCLUSIONS: Given parents' role in influencing sperm banking outcomes, provider recommendation and promotion of banking benefits may influence parents and empower initiation of these sensitive discussions with their sons. Utilization of this approach should yield beneficial outcomes regardless of the banking decision.

Characterizing Posterior Fossa Syndrome: A Survey of Experts.

BACKGROUND: Despite recent efforts, disagreement remains among frontline clinicians regarding the operational definition of a syndrome commonly referred to as posterior fossa syndrome or cerebellar mutism syndrome. METHODS: We surveyed experts in the clinical care of children with posterior fossa tumors to identify trends and discrepancies in diagnosing posterior fossa syndrome. RESULTS: All surveyed professionals conceptualized posterior fossa syndrome as a spectrum diagnosis. The majority agreed that mutism is the most important symptom for diagnosis. However, results highlighted ongoing discrepancies related to important features of posterior fossa syndrome. CONCLUSIONS: Greater posterior fossa syndrome conceptual alignment among providers is needed to formulate specific diagnostic criteria that would further research and clinical care. The authors propose preliminary diagnostic criteria for posterior fossa syndrome that require refinement through careful clinical characterization and targeted empirical investigation.

Factors Associated with Intention of Human Papillomavirus (HPV) Vaccine Initiation Among Females With and Without a History of Childhood Cancer.

Vaccination is available to prevent human papillomavirus (HPV) types that cause cervical and other cancers. This study aimed to describe and compare vaccine intention among young females with and without a cancer history, in addition to identifying factors associated with a HPV vaccination intention. Vaccine-naïve females (aged 18-26 years, n = 120) and maternal caregivers with vaccine-naïve daughters (aged 9-17 years, n = 197) completed surveys querying HPV vaccination intention, HPV knowledge, and communication, along with sociodemographic, medical, and health belief factors. Multivariable logistic regression was utilized to calculate odds ratio (OR) and 95% confidence intervals for HPV vaccination intention. No differences in vaccine intention were identified across cancer and comparison groups. Vaccine intention and predictors of intention among vaccine-naïve females differ by age, and there is variation in the factors which influence vaccine intention by age group. These results suggest interventions should be tailored based on developmental level.

The impact of connectedness on social functioning in youth with brain tumors.

PURPOSE: Children with brain tumors (BT) are at risk for difficulties with social functioning. Research to date has focused on deficits, with no studies identifying areas of strength or resilience. Our objective was to assess the potential influence of connectedness on social functioning in youth with BT as compared with children with other cancers. METHODS: Children with cancer (20 with BT, 33 with other diagnoses) were enrolled on a longitudinal study of psychosocial functioning. The current study included measures from time 2 (+1 year after enrollment; Mage  = 13.11 ± 2.31, Mtimesincediagnosis  = 4.95 ± 3.74 years) and time 3 (+3 years after enrollment; Mage  = 14.98 ± 2.36, Mtimesincediagnosis  = 6.82 ± 3.81 years). Youth completed the Hemingway Measure of Adolescent Connectedness (HMAC) at time 2. Two years later, social functioning was assessed by the self- and proxy-report versions of the Social-Emotional Assets and Resilience Scale (SEARS). RESULTS: Youth with BT perceived that they were less connected to friends (t(50) = -2.13, P = 0.04), but similarly connected to peers as youth with other cancers. Youth with BT also demonstrated lower social functioning by self- and parent report. Connectedness to friends significantly mediated the relationship between diagnostic category and self-reported social functioning, such that youth with BT who reported being more connected to friends also indicated greater social functioning. Analyses using connectedness to peers and/or parent-reported social functioning were nonsignificant. CONCLUSIONS: Perceiving a connection to a friend may be a protective factor that could mitigate deficits in social functioning in youth with BT. Additional research is needed to further assess the potential benefits of this construct.

Parent-reported executive functioning in young children treated for cancer.

It is well known that children treated for cancer are at risk for cognitive and functional impairments. Such research is largely based on studies of late effects in school-aged or older children. However, far less is known about executive function weaknesses in preschool-aged children treated for cancer. Thus, the aim of this study was to examine executive functioning in a clinically referred sample of young oncology patients, and its association with broader domains of functioning. Data from 61 young children with cancer, who were referred for clinical cognitive evaluations, were abstracted and included in this study. Patients were 5.00 years of age (SD = 0.72) at assessment, 54.1% male, and two-thirds (63.9%) had been treated for brain tumors. Most executive functions were significantly discrepant from the mean, with 47.5% of preschoolers having parent-reported working memory concerns within the clinically significant range. There were no differences in executive functioning based on diagnosis or treatment status. Parent-reported executive functioning was strongly correlated with global intelligence and adaptive functioning, with some indices also associated with nonverbal problem solving and pre-academic skills. Ultimately, results indicate the presence of emerging weaknesses in executive functioning in young children with cancer, and add to a growing body of literature highlighting the potential cognitive and behavioral risks associated with a cancer diagnosis in early childhood.

A quality improvement project to improve pediatric medical provider sleep and communication during night shifts.

QUALITY PROBLEM OR ISSUE: Night-shift medical providers frequently experience limited sleep resulting in fatigue, often because of paging activity. Streamlined medical-specific communication interventions are known to improve sleep and communication among these providers. INITIAL ASSESSMENT: We found that non-urgent paging communication occurred frequently during night-shifts, leading to provider sleep disturbances within our institution. We tested a quality improvement (QI) intervention to improve paging practices and determined its effect on provider sleep. CHOICE OF SOLUTION: We used a Plan-Do-Study-Act QI model aimed at improving clinician sleep and paging communications. IMPLEMENTATION: We initially conducted focus groups of nurses and physician trainees to inform the creation of a standardized paging intervention. We collected actigraphy and sleep log data from physicians, nurse practitioners, and physician trainees and performed electronic collection of paging frequency data. EVALUATION: Data were collected between December 2015 and March 2017 from pediatric residents, pediatric hematology/oncology (PHO) fellows, hospitalist medicine nocturnists and nurses working during night-shift hours in PHO inpatient units. We collected baseline data before implementation of the QI intervention and at 1 month post-implementation. Although objective measures and provider reports demonstrated improved medical-specific communication paging practices, provider sleep was not affected. LESSONS LEARNED: Provider-based standardization of paging communication was associated with improved medical-specific communication between nurses and providers; however, provider sleep was not affected. The strategies used in this intervention may be transferable to other clinics and institutions to streamline medical-specific communication.

Patient factors associated with sperm cryopreservation among at-risk adolescents newly diagnosed with cancer.

BACKGROUND: Although survivors of adolescent-onset cancers are at risk of infertility, the majority desire children. Fertility preservation options are available for adolescents, but sperm banking remains underused. To the authors' knowledge, patient factors that influence decisions to bank sperm are poorly understood. METHODS: A cross-sectional study of 146 adolescent males who were newly diagnosed with cancer and who completed surveys within 1 week of treatment initiation was performed. Participants, 65% of whom were white, were aged 13 to 21 years (mean, 16.49 years; standard deviation, 2.02 years) and were at risk of infertility secondary to impending gonadotoxic treatment. Participating institutions included 8 leading pediatric oncology centers across the United States and Canada. RESULTS: Of the patients approached, approximately 80.6% participated. Parent recommendation to bank (odds ratio [OR], 4.88; 95% confidence interval [95% CI], 1.15-20.71 [P = .03]), higher Tanner stage (OR, 4.25; 95% CI, 1.60-11.27 [P < .01]), greater perceived benefits (OR, 1.41; 95% CI, 1.12-1.77 [P < .01]), and lower social barriers to banking (OR, 0.88; 95% CI, 0.81-0.96 [P < .01]) were found to be associated with adolescent collection attempts, whereas meeting with a fertility specialist (OR, 3.44; 95% CI, 1.00-11.83 [P = .05]), parent (OR, 3.02; 95% CI, 1.12-8.10 [P = .03]) or provider (OR, 2.67; 95% CI, 1.05-6.77 [P = .04]) recommendation to bank, and greater adolescent self-efficacy to bank (OR, 1.16; 95% CI, 1.01-1.33 [P = .03]) were found to be associated with successful sperm banking. CONCLUSIONS: Adolescents' perceived benefits of sperm banking, higher Tanner stage, and parent recommendation were associated with collection attempts, whereas perceived social barriers decreased this likelihood. Successful banking was associated with greater adolescent self-efficacy, parent and provider recommendation to bank, and consultation with a fertility specialist. Providers should consult with both adolescents and parents regarding fertility preservation, and interventions should be tailored to address barriers to sperm banking while promoting its benefits.

Accurate understanding of infertility risk among families of adolescent males newly diagnosed with cancer.

OBJECTIVE: To examine patient and parent understanding of infertility risk (relative to oncologists' risk ratings) among adolescents newly diagnosed with cancer, and to identify background factors related to inaccurate reporting/estimating. METHODS: Male patients (N = 137; aged 13-21) and their parents completed self-report questionnaires. Those who reported a fertility-related conversation with their provider (N = 102 adolescents, N = 74 parents) reported their infertility risk (ie, what oncologist had communicated) and all participants' estimated risk (ie, personal belief). Reports/estimates were compared with oncologists' ratings to assess relative accuracy, and regression analyses assessed potentially related background factors. RESULTS: Participants' agreement of their risk reports with the oncologist was poor (κ = .079/.122 for adolescents/parents), resulting in most adolescents (59.8%) and parents (58.7%) inaccurately reporting risk. Older adolescents were less likely to overreport risk (OR = 0.69; 95% CI, 0.49-0.97) and parents of sons with the highest Tanner stage were less likely to underreport (OR = 0.28; 95% CI, 0.08-0.92). Risk estimates were also in poor agreement with oncologists' ratings among adolescents (κ = .040) and parents (κ = .088). Accordingly, incongruent estimates occurred in most adolescents (63.7%) and parents (62.2%), although all reported fertility-related conversations with their providers. CONCLUSIONS: Most adolescents and parents inaccurately reported infertility risk, and more poorly estimated risk. Research is needed to identify additional factors associated with accurate understanding of cancer-related infertility risk. Providers should be supported with user-friendly educational tools to promote awareness of infertility risk.

Parental influences on sperm banking attempts among adolescent males newly diagnosed with cancer.

OBJECTIVE: To investigate the influence of parental sociodemographic, communication, and psychological factors on sperm collection attempts among at-risk adolescent males newly diagnosed with cancer. DESIGN: Prospective, single group, observational study design. SETTING: Pediatric oncology centers. PATIENT(S): Parents (N = 144) of 122 newly diagnosed adolescent males at increased risk for infertility secondary to cancer therapy. INTERVENTION(S): Survey-based assessment of parent factors associated with adolescent collection attempts. MAIN OUTCOME MEASURE(S): Attempt of manual collection of sperm. RESULT(S): Parental recommendation to bank sperm (odds ratio [OR] 3.72; 95% confidence interval [CI] 1.18-11.76) and perceived self-efficacy to facilitate banking (OR 1.20; 95% CI 1.02-1.41) were associated with an increased likelihood of making a collection attempt. CONCLUSION(S): Parental recommendation to bank is a critical influence for sperm banking among adolescent males newly diagnosed with cancer. These findings highlight the importance of effective communication between parents, patients, and health-care teams when discussing preservation options. Parent perceptions of their ability to facilitate sperm banking at the time of diagnosis should also be targeted in future interventions. CLINICAL TRIAL REGISTRATION NUMBER: NCT01152268.

Prevalence and Predictors of Sperm Banking in Adolescents Newly Diagnosed With Cancer: Examination of Adolescent, Parent, and Provider Factors Influencing Fertility Preservation Outcomes.

Purpose To estimate the prevalence of sperm banking among adolescent males newly diagnosed with cancer and to identify factors associated with banking outcomes. Patients and Methods A prospective, single-group, observational study design was used to test the contribution of sociodemographic, medical, psychological/health belief, communication, and developmental factors to fertility preservation outcomes. At-risk adolescent males (N = 146; age 13.00 to 21.99 years; Tanner stage ≥ 3), their parents, and medical providers from eight leading pediatric oncology centers across the United States and Canada completed self-report questionnaires within 1 week of treatment initiation. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% CIs for specified banking outcomes (collection attempt v no attempt and successful completion of banking v no banking). Results Among adolescents (mean age, 16.49 years; standard deviation, 2.02 years), 53.4% (78 of 146) made a collection attempt, with 43.8% (64 of 146) successfully banking sperm (82.1% of attempters). The overall attempt model revealed adolescent consultation with a fertility specialist (OR, 29.96; 95% CI, 2.48 to 361.41; P = .007), parent recommendation to bank (OR, 12.30; 95% CI, 2.01 to 75.94; P = .007), and higher Tanner stage (OR, 5.42; 95% CI, 1.75 to 16.78; P = .003) were associated with an increased likelihood of a collection attempt. Adolescent history of masturbation (OR, 5.99; 95% CI, 1.25 to 28.50; P = .025), banking self-efficacy (OR, 1.23; 95% CI, 1.05 to 1.45; P = .012), and parent (OR, 4.62; 95% CI, 1.46 to 14.73; P = .010) or medical team (OR, 4.26; 95% CI, 1.45 to 12.43; P = .008) recommendation to bank were associated with increased likelihood of sperm banking completion. Conclusion Although findings suggest that banking is underutilized, modifiable adolescent, parent, and provider factors associated with banking outcomes were identified and should be targeted in future intervention efforts.

Cognitive and Psychosocial Functioning of Preschool-Aged Children with Cancer.

OBJECTIVE: Most children with cancer are diagnosed in early childhood, potentially resulting in missed developmental opportunities. The most common diagnoses-brain tumors, leukemia-are also associated with increased risk of neurocognitive deficits. Unfortunately, research regarding the functioning of preschool-aged children with cancer is limited. Our objective is to describe the cognitive and psychosocial functioning of preschool-aged children with cancer who completed a clinical evaluation at a hospital-based psychology clinic. METHODS: Assessment data from 98 preschool-aged children with cancer (M = 5.17 years old, SD = 0.54; 54.1% male) who completed clinically referred evaluations from 2011 to 2015 were abstracted. Because of variability in assessment measures used across clinicians, indicators of cognitive, adaptive, preacademic, and emotional/behavioral functioning were collapsed before analyses. RESULTS: Children were 2.56 years from diagnosis (SD = 1.46, range 0-5.25 years) and most were off therapy (79.6%). Primary diagnostic categories were represented: brain tumor (68.4%), solid tumor (15.3%), and leukemia (16.3%). Mean IQ scores were significantly below expectations (t[80] = -7.95, p < .001). There were no differences based on diagnostic category, treatment status, or sex. Adaptive functioning (t[73] = -8.42, p < .001) and preacademic skills (t[77] = -6.20, p < .001) were also significantly below expectations. Mean scores on a measure of parent-reported emotional/behavioral functioning were in the average range. CONCLUSION: Young children with cancer may be at significant risk of deficits in intellectual, adaptive, and preacademic functioning. Although our sample is biased by those who were referred for clinical evaluations, the severity of deficits highlights the potential vulnerability of young patients, even before most have entered formal school. Interventions-such as hospital-based preschool programs to increase preacademic skills-should be designed that explicitly target preschool-aged children and focus on a wide range of domains.

Human Papillomavirus Vaccination Rates in Young Cancer Survivors.

Purpose: Cancer survivors are at high risk for human papillomavirus (HPV)-related morbidities; we estimated the prevalence of HPV vaccine initiation in cancer survivors versus the US population and examined predictors of noninitiation. Methods: Participants included 982 cancer survivors (9 to 26 years of age; 1 to 5 years postcompletion of therapy); we assessed HPV vaccine initiation, sociodemographic and clinical characteristics, and vaccine-specific health beliefs; age-, sex-, and year-matched US population comparisons were from the National Immunization Survey-Teen and the National Health Interview Survey (2012-2015). Results: The mean age at the time of the study was 16.3 ± 4.7 years; the mean time off therapy was 2.7 ± 1.2 years; participants were 55% male and 66% non-Hispanic white; 59% had leukemia/lymphoma. Vaccine initiation rates were significantly lower in cancer survivors versus the general population (23.8%; 95% CI, 20.6% to 27.0% v 40.5%; 95% CI, 40.2% to 40.7%; P < .001); survivors were more likely to be HPV vaccine-naïve than general population peers (odds ratio [OR], 1.72; 95% CI, 1.41 to 2.09; P < .001). Initiation in adolescent survivors (ages 13 to 17 years) was 22.0% (95% CI, 17.3% to 26.7%), significantly lower than population peers (42.5%; 95% CI, 42.2% to 42.8%; P < .001). Initiation in young adult survivors and peers (ages 18 to 26 years) was comparably low (25.3%; 95% CI, 20.9% to 29.7% v 24.2%; 95% CI, 23.6% to 24.9%). Predictors of noninitiation included lack of provider recommendation (OR, 10.8; 95% CI, 6.5 to 18.0; P < .001), survivors' perceived lack of insurance coverage for HPV vaccine (OR, 6.6; 95% CI, 3.9 to 11.0; P < .001), male sex (OR, 2.9; 95% CI, 1.7 to 4.8; P < .001), endorsement of vaccine-related barriers (OR, 2.7; 95% CI, 1.6 to 4.6; P < .001), and younger age (9 to 12 years; OR, 3.7; 95% CI, 1.8-7.6; P < .001; comparison, 13 to 17 years). Conclusion: HPV vaccine initiation rates in cancer survivors are low. Lack of provider recommendation and barriers to vaccine receipt should be targeted in vaccine promotion efforts.

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma.

BACKGROUND: Retinoblastoma is typically diagnosed in young children and may present unique parenting challenges. Qualitative research suggests that parents experience distress related to the initial diagnosis and treatment that subsequently resolves. The objectives were to systematically assess parenting stress over time in parents of young children with retinoblastoma and to examine associations between parenting stress and child outcomes. PROCEDURES: Parents of children with retinoblastoma completed the Parenting Stress Index (PSI) during serial psychological assessments scheduled based on the child's age (6 months to 5 years). Caregivers of 92 patients (85.9% mothers) completed the assessments. Child outcomes included developmental functioning and parent-reported adaptive functioning. RESULTS: At baseline and age 5, all subscales on the PSI were within normal limits, and most were significantly below normative means (i.e., demonstrating low levels of stress). All domains remained relatively stable over time. Associations between parenting stress and child outcomes were much stronger at age 5 than at baseline. Child-directed parenting stress was a small but significant contributor to declines in child functioning over time. CONCLUSIONS: Parents of children with retinoblastoma report normal levels of parenting stress while their children are young. However, baseline parenting stress appears to contribute to changes in child functioning over time. Future studies should assess illness-related aspects of adjustment to further understand the parenting experience of young children with cancer and/or having a visually impaired child.

Provider Influences on Sperm Banking Outcomes Among Adolescent Males Newly Diagnosed With Cancer.

PURPOSE: The purpose of this study was to examine provider communication and sociodemographic factors which associate with sperm banking outcomes in at-risk adolescents newly diagnosed with cancer. METHODS: A prospective single-group quasi-experimental study design was used to test the contributions of provider factors on sperm banking outcomes. Medical providers (N = 52, 86.5% oncologists) and 99 of their at-risk adolescent patients from eight leading pediatric oncology centers in North America completed questionnaires querying provider factors and patient sperm banking outcomes. Logistic regression with single covariates was used to test each provider factor as a potential correlate of the two binary sperm banking study outcomes (collection attempt/no attempt and successful sperm bank/no bank). Multicovariate logistic regression was used to calculate odds ratios (OR) and 95% confidence intervals (CIs) for specified banking outcomes. RESULTS: Fertility referral (OR, 9.01; 95% CI, 2.54-31.90; p < .001) and provider comfort/skills in negotiating barriers to sperm banking with families (OR, 1.94; 95% CI, 1.03-3.63; p < .04) were associated with collection attempts. Adolescents who were referred for a specialized fertility consultation were also almost five times more likely to successfully bank (OR, 4.96; 95% CI, 1.54-16.00; p < .01) compared to those who were not. CONCLUSIONS: Provider training in communicating/managing adolescents and their families about sperm banking, and increasing utilization of fertility preservation referrals, should increase the proportion of at-risk males preserving fertility before treatment initiation.

Prevalence and predictors of human papillomavirus (HPV) vaccination among young women surviving childhood cancer.

PURPOSE: Human papillomavirus (HPV) is a sexually transmitted infection and the cause of cervical and other cancers. Vaccination is available to protect against genital HPV and is recommended for individuals aged 9-26 years. This study aimed to estimate the prevalence of HPV vaccination among childhood cancer survivors and to identify factors associated with vaccine outcomes. METHODS: Young adult females with (n = 114; M age = 21.18 years, SD = 2.48) and without (n = 98; M age = 20.65 years, SD = 2.29) a childhood cancer history completed surveys querying HPV vaccination initiation/completion, as well as sociodemographic, medical, and health belief factors. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95 % confidence intervals (CIs) for vaccine outcomes. RESULTS: Among survivors, 38.6 % (44/114) and 26.3 % (30/114) initiated or completed vaccination compared to 44.9 % (44/98) and 28.6 % (28/98) among controls, respectively. In the combined survivor/control group, physician recommendation (OR = 11.24, 95 % CI 3.15-40.14) and familial HPV communication (OR = 7.28, 95 % CI 1.89-28.05) associated with vaccine initiation. Perceptions of vaccine benefit associated with vaccine completion (OR = 10.55, 95 % CI 1.59-69.92), whereas perceptions of HPV-related severity associated with non-completion (OR = 0.14, 95 % CI 0.03-0.71). CONCLUSION: Despite their increased risk for HPV-related complication, a minority of childhood cancer survivors have initiated or completed HPV vaccination. Modifiable factors associated with vaccine outcomes were identified. IMPLICATIONS FOR CANCER SURVIVORS: HPV vaccination is a useful tool for cancer prevention in survivorship, and interventions to increase vaccine uptake are warranted.