Effect of Sensorineural Hearing Loss on Neurocognitive Functioning in Pediatric Brain Tumor Survivors.

BACKGROUND: Intensified therapy with platinum-based regimens for pediatric brain tumors has dramatically increased the number of pediatric brain tumor survivors (PBTS) but frequently causes permanent sensorineural hearing loss (SNHL). Although neurocognitive decline in PBTS is known to be associated with radiation therapy (RT), SNHL represents a potential additional contributor whose long-term impact has yet to be fully determined. METHODS: The neurocognitive impact of significant SNHL (Chang scale ≥ 2b) in PBTS was assessed through a retrospective cohort study of audiograms and neurocognitive testing. Scores for neurocognitive domains and subtest task performance were analyzed to identify specific strengths and weakness for PBTS with SNHL. RESULTS: In a cohort of PBTS (n = 58) treated with platinum therapy, significant SNHL was identified in more than half (55%, n = 32/58), of which the majority required hearing aids (72%, 23/32). RT exposure was approximately evenly divided between those with and without SNHL. PBTS were 6.7 ± 0.6 and 11.3 ± 0.7 years old at diagnosis and neurocognitive testing, respectively. In multivariate analyses adjusted for RT dose, SNHL was independently associated with deficits in intelligence, executive function, and verbal reasoning skills. Subtests revealed PBTS with SNHL to have poor learning efficiency but intact memory and information acquisition. CONCLUSIONS: SNHL in PBTS increases the risk for severe therapy-related intellectual and neurocognitive deficits. Additional prospective investigation in malignant brain tumors is necessary to validate these findings through integration of audiology and neurocognitive assessments and to identify appropriate strategies for neurocognitive screening and rehabilitation specific to PBTS with and without SNHL.

Impact of Caregiving for a Child With Cancer on Parental Health Behaviors, Relationship Quality, and Spiritual Faith: Do Lone Parents Fare Worse?

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents.

Substance use among adolescent and young adult cancer survivors.

OBJECTIVE: Health-promoting behaviors are recommended to childhood cancer survivors (CCS) to reduce late effects resulting from cancer treatment. Understanding factors associated with substance use is needed, especially among Hispanic CCS who are underrepresented in previous studies. The objective of this study is to examine substance use behaviors of recently treated Hispanic and non-Hispanic CCS. METHODS: One hundred ninety-three Los Angeles County CCS who were diagnosed between 2000 and 2007 (54% Hispanic; mean age 19.9 years, SD = 2.8; mean age at diagnosis = 12.1, SD = 3.0; mean years since diagnosis = 7.8, SD = 2.0) provided self-reported information on substance use, demographics, clinical factors, religiosity, and depressive symptoms. Risk and protective factors for substance use were examined using multivariable logistic regression. RESULTS: Prevalence of 30-day substance use was 11%, 25%, and 14% for tobacco, alcohol, and marijuana, respectively. In controlled regression models, age was positively associated with tobacco use, binge drinking, and polysubstance use (use of at least two of the three substances). Male gender, higher depressive symptoms, and higher socioeconomic status were associated with greater marijuana use. In addition, religiosity was negatively associated with the use of all substances. CONCLUSIONS: The prevalence rates for substance use in this ethnically diverse representative sample of CCS are lower than those observed in the general population. Older CCS were at higher risk of substance use, and depression was associated with greater marijuana use. No differences by ethnicity were observed. Interventions for substance use prevention/cessation among CCS may be most effective if implemented before the age of 21 years and address mental health as part of survivorship care. Copyright © 2015 John Wiley & Sons, Ltd.

Cancer-related follow-up care among Hispanic and non-Hispanic childhood cancer survivors: The Project Forward study.

BACKGROUND: Follow-up care is critical for childhood cancer survivors (CCS), who are at high risk for comorbidities and late effects of cancer treatments. Understanding the factors associated with maintaining follow-up care is needed, especially for Hispanic CCS, who have been under-represented in previous studies. METHODS: Risk factors and protective factors for receiving cancer-related follow-up care were examined among 193 Los Angeles County CCS diagnosed between 2000 and 2007 (54% Hispanic; mean ± standard deviation age, 19.9 ± 2.8 years; age at diagnosis, 12.1 ± 3.0 years; time since diagnosis, 7.8 ± 2.0 years). Self-report surveys were used to assess follow-up care, insurance status, demographics, clinical factors, and psychosocial risk (eg, depression) and protective (eg, self-efficacy [SE]) factors. Multivariable logistic regression was used to identify factors associated with the previous receipt of cancer-related follow-up care (in prior 2 years) and the intent to seek future cancer-related follow-up care. RESULTS: Seventy-three percent of CCS reported a cancer follow-up visit in the previous 2 years, which was positively associated (P < .05) with having health insurance, white ethnicity (vs Hispanic), younger age, and greater treatment intensity. Sixty-nine percent reported an intent to receive follow-up care in the next 2 years, which was positively associated (P < .05) with having health insurance and greater SE. CONCLUSIONS: Hispanics and older CCS were more likely to lack previous follow-up care. Because health insurance was strongly associated with both previous follow-up care and the intent to seek care, the current results indicate that recent changes in health coverage may improve follow-up among CCS. Interventions targeting improved SE may help increase intent to receive follow-up care for this population.

Evaluation of the psychometric properties of the Pediatric Parenting Stress Inventory (PPSI).

OBJECTIVE: This work evaluated the psychometric properties of the Pediatric Parenting Stress Inventory (PPSI), a new measure of problems and distress experienced by parents of children with chronic illnesses. METHOD: This secondary data analysis used baseline data from 1 sample of English-, Spanish-, and Hebrew-speaking mothers of children recently diagnosed with cancer (n = 449) and 1 sample of English- and Spanish-speaking mothers of children recently diagnosed with cancer (n = 399) who participated in 2 problem-solving skills training interventions. The PPSI was administered at baseline with other measures of maternal distress. Factor structure was evaluated using exploratory factor analysis (EFA) on the first sample and confirmatory factor analysis (CFA) on both samples. Internal consistency was evaluated using Cronbach's alpha. Construct validity was assessed via Spearman correlations with measures of maternal distress. RESULTS: EFA resulted in a stable four-factor solution with 35 items. CFA indicated that the four-factor solution demonstrated reasonable fit in both samples. Internal consistency of the subscales and full scale was adequate to excellent. Construct validity was supported by moderate to strong correlations with measures of maternal distress, depression, and posttraumatic stress symptoms. CONCLUSIONS: The PPSI demonstrated good psychometric properties in assessing current problems and distress experienced by mothers of children newly diagnosed with cancer. This tool may be used to identify individualized targets for intervention in families of children with cancer. Future studies could evaluate the utility and psychometrics of the PPSI with other pediatric populations.

PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: feasibility, reliability, and validity.

BACKGROUND: Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years. PROCEDURE: This was a cross-sectional multi-site study whereby 240 pediatric patients with SCD and 303 parents completed the 18-item PedsQL™ Multidimensional Fatigue Scale. Participants also completed the PedsQL™ 4.0 Generic Core Scales. RESULTS: The PedsQL™ Multidimensional Fatigue Scale evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.90; parent proxy-report α = 0.95), and acceptable reliability for the three individual scales (patient self-report α = 0.77-0.84; parent proxy-report α = 0.90-0.97). Intercorrelations of the PedsQL™ Multidimensional Fatigue Scale with the PedsQL™ Generic Core Scales were predominantly in the large (≥0.50) range, supporting construct validity. PedsQL™ Multidimensional Fatigue Scale Scores were significantly worse with large effects sizes (≥0.80) for patients with SCD than for a comparison sample of healthy children, supporting known-groups discriminant validity. Confirmatory factor analysis demonstrated an acceptable to excellent model fit in SCD. CONCLUSIONS: The PedsQL™ Multidimensional Fatigue Scale demonstrated acceptable to excellent measurement properties in SCD. The results demonstrate the relative severity of fatigue symptoms in pediatric patients with SCD, indicating the potential clinical utility of multidimensional assessment of fatigue in patients with SCD in clinical research and practice.

Mental health disparities between Hispanic and non-Hispanic parents of childhood cancer survivors.

BACKGROUND: Parents of childhood cancer survivors (CCS) experience considerable distress related to their child's cancer. However, little is known about cultural variation in this experience. We examine parental distress, specifically symptoms of post-traumatic stress (PTSS) and depression, comparing Hispanic and non-Hispanic parents of CCS. PROCEDURE: Seventy-nine Hispanic and 60 non-Hispanic parents of CCS (currently aged 14-25, off treatment ≥2 years) completed questionnaires assessing demographics, depression, PTSS, perceived stress, and child's health status/quality of life (QOL). t-Tests and chi-square statistics were used to compare differences in demographic characteristics between Hispanic and non-Hispanic parents and multivariable regression was used to determine independent risk factors associated with parental PTSS and depression. RESULTS: Hispanic parents were significantly younger, had less education, lower incomes and reported significantly more PTSS and depressive symptoms than non-Hispanic parents (all P-values < 0.0001). Among Hispanic parents, foreign birthplace predicted higher PTSS after controlling for other factors (P < 0.001). Hispanic parents, regardless of birthplace, reported more depressive symptoms than non-Hispanic parents (US-born, P < 0.05; foreign-born, P < 0.01). For PTSS and depression, there were positive relationships with parental stress and negative relationships with the child's psychosocial QOL. Hispanic and non-Hispanic CCS did not differ significantly on disease and treatment factors or health-related QOL. CONCLUSIONS: Hispanic parents of CCS may be at greater risk for poorer mental health outcomes. Ethnic-specific factors (e.g., acculturation, immigration status, and previous trauma) may influence parents' responses and adjustment to their child's cancer. Research is needed to determine how to meet the needs of the most vulnerable parents.

PedsQL™ sickle cell disease module: feasibility, reliability, and validity.

BACKGROUND: Sickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso-occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years. PROCEDURE: The 43-item PedsQL™ SCD Module was completed in a multisite study by 243 pediatric patients with SCD and 313 parents. Participants also completed the PedsQL™ 4.0 Generic Core Scales and PedsQL™ Multidimensional Fatigue Scale. RESULTS: The PedsQL™ SCD Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.95; parent proxy-report α = 0.97), and good reliability for the nine individual scales (patient self-report α = 0.69-0.90; parent proxy-report α = 0.83-0.97). Intercorrelations with the PedsQL™ Generic Core Scales and PedsQL™ Multidimensional Fatigue Scales were medium (0.30) to large (0.50) range, supporting construct validity. PedsQL™ SCD Module Scale Scores were generally worse for patients with severe versus mild disease. Confirmatory factor analysis demonstrated an acceptable to excellent model fit. CONCLUSIONS: The PedsQL™ SCD Module demonstrated acceptable measurement properties. The PedsQL™ SCD Module may be utilized in the evaluation of SCD-specific health-related quality of life in clinical research and practice. In conjunction with the PedsQL™ Generic Core Scales and the PedsQL™ Multidimensional Fatigue Scale, the PedsQL™ SCD Module will facilitate the understanding of the health and well-being of children with SCD.

Quantifying the relationship among hospital design, satisfaction, and psychosocial functioning in a pediatric hematology-oncology inpatient unit.

BACKGROUND: Studies show that hospital built environments can affect physical and psychological outcomes and healthcare satisfaction in adults, but pediatric research is sparse. OBJECTIVE: To investigate the effects of the built environment on hospitalized pediatric hematology-oncology patients and their parents by testing the hypothesis that perceived built environment satisfaction mediates the relationship between the objective built environment and psychosocial functioning, as well as parental healthcare satisfaction. METHODS: The hospital built environment was evaluated subjectively through the PedsQL™ Hospital Healing Environment Module satisfaction questionnaires and objectively by quantifying environmental features. Outcomes for patients and parents included present functioning and affect. Healthcare satisfaction was also assessed for parents. Structural equation modeling (SEM) was used to test the mediational hypothesis. SUBJECTS: Participants were 90 hospitalized pediatric hematology-oncology patients and 149 parents of pediatric hematology-oncology patients. RESULTS: For both parents and children, analyses revealed a significant positive relationship between the quality of the objective built environment and built environment satisfaction. For parents, significant relationships emerged in the expected direction between built environment satisfaction and present functioning, healthcare satisfaction, and negative affect. CONCLUSIONS: Both pediatric hematology-oncology patients and their parents can reliably report their own perceived built environment satisfaction, which is significantly related to the quality of the objective built environment. For parents, results support the mediational hypothesis, highlighting the importance that perceived built environment satisfaction plays in psychosocial functioning and healthcare satisfaction.