Impact of executive functioning on health-related quality of life of pediatric brain tumor survivors.

BACKGROUND: Brain tumor survivors are at risk for significant late effects following treatment completion that may adversely impact health-related quality of life (HRQOL). The current study examines the relationship between executive functioning (EF) and HRQOL in pediatric brain tumor survivors within a longitudinal framework. We hypothesized that early deficits in EF would be related to less optimal HRQOL in this population. PROCEDURE: The current study utilized retrospective medical chart review to identify neurocognitive correlates of HRQOL in 137 youth previously treated for a pediatric brain tumor. Participants completed the Pediatric Quality of Life Inventory (PedsQL) and neuropsychological assessment, including a well-validated measure of executive functioning (Behavior Rating Inventory of Executive Function; BRIEF). General linear regression and multivariate models were utilized to examine the relationship between child executive functioning and HRQOL. RESULTS: Multiple domains of child executive functioning, as reported by parents on the BRIEF, significantly predicted parent-proxy reported HRQOL after controlling for demographic and medical covariates, including child intellectual functioning (IF). Similarly, after controlling for covariates, the BRIEF Cognitive Regulation Index was a significant predictor of self-reported physical and school functioning domains of HRQOL. CONCLUSION: Current data demonstrate EF is a significant predictor of HRQOL during survivorship for youth previously diagnosed with a pediatric brain tumor. Results suggest that opportunities may exist to intervene and improve HRQOL of pediatric brain tumor survivors by targeting EF.

Understanding how out-of-pocket expenses, treatment value, and patient characteristics influence treatment choices.

PURPOSE: Cost sharing, intended to control the "overuse" of health care resources, may also reduce use of necessary services. The influence of cost on the treatment choices of patients with life-threatening illness, such as cancer, is unknown. METHODS: A convenience sample of patients undergoing surveillance following curative treatment for localized cancer completed a paper survey that included three scenarios to elicit the maximum copayment they would be willing to pay for better treatment outcomes. Scenario A described a treatment for a curable cancer in terms of recurrence risk. Scenarios B and C described treatments for noncurable cancer in terms of the 2-year survival probability and median life expectancy. RESULTS: The sample (n = 60) was 78% female, 83% aged <65 years, and 58% college graduates. Thirteen percent reported making financial sacrifices to pay for treatment. Patients were willing to pay higher copayments for more effective treatments (p < .05 for all three scenarios). In scenario B, patients who were employed demonstrated a greater willingness to pay (WTP) (odds ratio [OR], 12.6; 95% confidence interval [CI], 2.0-80.4), when controlling for efficacy. In scenario C, college graduates showed greater WTP (OR, 5.0; 95% CI, 1.2-20.9) and patients who reported previous financial sacrifices showed lower WTP (OR, 0.2; 95% CI, 0.04-0.6). CONCLUSION: This pilot study suggests that patients may be less willing to pay high copayments for treatments with modest benefit. Even among this relatively young, affluent, and educated population, demographic variables were related to WTP. Larger studies in more diverse populations should be conducted to better understand how cost may influence treatment decisions and cancer treatment outcomes.

Case Report: Ventilator weaning, tracheostomy decannulation and noninvasive ventilation in an adolescent with autism spectrum disorder and new onset spinal cord injury.

Introduction: Spinal cord injury (SCI) is a cause of significant psychosocial stress not only to the individual with SCI but also to their family. This is compounded when an individual with a new SCI has premorbid behavioral and medical conditions. For individuals requiring long term positive pressure ventilation, transition to noninvasive ventilation (NIV) can improve the long term outcome and improve quality of life. Case presentation: This case report describes a teenage boy with premorbid autism spectrum disorder who incurred an acute SCI and developed chronic respiratory failure. He was admitted to acute inpatient rehabilitation with tracheostomy and ventilator dependence. Using an interdisciplinary team approach with in vivo desensitization behavioral interventions, he was successfully weaned off mechanical ventilation, his tracheostomy tube was removed, and he was transitioned to NIV. Discussion: This case describes a medically complex adolescent who was successfully transitioned to NIV through behavioral desensitization using a team approach. This is noteworthy given the magnitude of behaviors demonstrated prior to his desensitization protocol. This case demonstrates how serious behavioral barriers to NIV can be overcome using desensitization and strategic behavioral reinforcement techniques.

Delivery of Internet-based cancer genetic counselling services to patients' homes: a feasibility study.

We examined the feasibility of home videoconferencing for providing cancer genetic education and risk information to people at risk. Adults with possible hereditary colon or breast and ovarian cancer syndromes were offered Internet-based counselling. Participants were sent web cameras and software to install on their home PCs. They watched a prerecorded educational video and then took part in a live counselling session with a genetic counsellor. A total of 31 participants took part in Internet counselling sessions. Satisfaction with counselling was high in all domains studied, including technical (mean 4.3 on a 1-5 scale), education (mean 4.7), communication (mean 4.8), psychosocial (mean 4.1) and overall (mean 4.2). Qualitative data identified technical aspects that could be improved. All participants reported that they would recommend Internet-based counselling to others. Internet-based genetic counselling is feasible and associated with a high level of satisfaction among participants.