Nalin Payakachat

Late complications and long-term quality of life for survivors (>5 years) with history of head and neck cancer

Quality of life (QOL) outcomes become critical for survivors of head and neck cancer. Most QOL studies were based on <5‐year outcomes and very few addressed >5‐year outcomes. This study focused late complications and >5‐year outcomes and also compared the 2 standard treatments.

PREFERENCE-BASED HEALTH-RELATED QUALITY OF LIFE OUTCOMES IN CHILDREN WITH AUTISM SPECTRUM DISORDERS: A COMPARISON OF GENERIC INSTRUMENTS

BackgroundCost-effectiveness analysis of pharmaceutical and other treatments for children with autism spectrum disorders (ASDs) has the potential to improve access to services by demonstrating the value of treatment to public and private payers, but methods for measuring QALYs in children are under-studied. No cost-effectiveness analyses have been undertaken in this population using the cost-per-QALY metric.ObjectiveThis study describes health-related quality-of-life (HR-QOL) outcomes in children with ASDs and compares the sensitivity of two generic preference-based instruments relative to ASD-related conditions and symptoms.MethodsThe study design was cross-sectional with prospectively collected outcome data that were correlated with retrospectively assessed clinical information. Subjects were recruited from two sites of the Autism Treatment Network (ATN) in the US: a developmental centre in Little Rock, Arkansas, and an outpatient psychiatric clinic at Columbia University Medical Center in New York. Children that met Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria for an ASD by a multidisciplinary team evaluation were asked to participate in a clinical registry. Families of children with an ASD that agreed to be contacted about participation in future research studies as part of the ATN formed the sampling frame for the study. Families were included if the child with the ASD was between 4 and 17 years of age and the family caregiver spoke English. Eligible families were contacted by mail to see if they would be interested in participating in the study with 150 completing surveys. HR-QOL outcomes were described using the Health Utilities Index (HUI) 3 and the Quality of Well-Being Self-Administered (QWB-SA) scale obtained by proxy via the family caregiver.ResultsChildren were diagnosed as having autistic disorder (76%), pervasive developmental disorder-not otherwise specified [PDD-NOS] (15%), and Asperger’s disorder (9%). Average HUI3 and QWB-SA scores were 0.68 (SD 0.21, range 0.07–1) and 0.59 (SD 0.16, range 0.18–1), respectively. The HUI3 score was significantly correlated with clinical variables including adaptive behaviour (ρ=0.52;p<0.001) and cognitive functioning (ρ=0.36;p<0.001). The QWB-SA score had weak correlation with adaptive behaviour (ρ=0.25;p<0.001) and cognitive functioning (ρ=0.17;p<0.005). Change scores for the HUI3 were larger than the QWB-SA for all clinical measures. Scores for the HUI3 increased 0.21 points (95% CI 0.14, 0.29) across the first to the third quartile of the cognitive functioning measure compared with 0.05 (95% CI −0.01, 0.11) for the QWB-SA. Adjusted R2 values also were higher for the HUI3 compared with the QWB-SA across all clinical measures.ConclusionsThe HUI3 was more sensitive to clinical measures used to characterize children with autism compared with the QWB-SA score. The findings provide a benchmark to compare scores obtained by alternative methods and instruments. Researchers should consider incorporating the HUI3 in clinical trials and other longitudinal research studies to build the evidence base for describing the cost effectiveness of services provided to this important population.

Autism spectrum disorders: a review of measures for clinical, health services and cost-effectiveness applications.

Autism spectrum disorders (ASDs) are characterized by impairments in social interaction, communication and behavioral functioning that can affect the health-related quality-of-life outcomes of the affected child and the family. ASDs have increased in prevalence, leading to a demand for improved understanding of the comparative effectiveness of different pharmacologic, behavioral, medical and alternative treatments for children as well as systems for providing services. This review describes outcome instruments that can be used for clinical, health services and cost–effectiveness applications. There is a pressing need to identify the most appropriate instruments for measuring health-related quality-of-life outcomes in this population. Studies evaluating the cost–effectiveness of interventions or treatments for children with ASDs using the cost per quality-adjusted life year metric are lacking. Researchers have the potential to contribute greatly to the field of autism by quantifying outcomes that can inform optimal treatment strategies.

Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol

This study describes the impact of caregiving on parents of children with autism spectrum disorders (ASDs). Secondly, we investigate construct validation of the care-related quality of life instrument (CarerQol) measuring impact of caregiving. Primary caregivers of children with ASDs were included. Many parents experienced considerable problems combining daily activities with care, had financial problems or suffered from depressive mood. Validity tests showed that a higher impact of caring on the CarerQol was positively associated with higher subjective burden and lower family quality of life. Most of the associations between CarerQol scores and background characteristics confirmed previous research. The CarerQol validly measures the impact of caregiving for children with ASDs on caregivers in our sample. The CarerQol may therefore be useful for including parent outcomes in research on ASDs.

Predicting Health Utilities for Children with Autism Spectrum Disorders

Comparative effectiveness of interventions for children with autism spectrum disorders (ASDs) that incorporates costs is lacking due to the scarcity of information on health utility scores or preference‐weighted outcomes typically used for calculating quality‐adjusted life years (QALYs). This study created algorithms for mapping clinical and behavioral measures for children with ASDs to health utility scores. The algorithms could be useful for estimating the value of different interventions and treatments used in the care of children with ASDs. Participants were recruited from two Autism Treatment Network sites. Health utility data based on the Health Utilities Index Mark 3 (HUI3) for the child were obtained from the primary caregiver (proxy‐reported) through a survey (N = 224). During the initial clinic visit, proxy‐reported measures of the Child Behavior Checklist, Vineland II Adaptive Behavior Scales, and the Pediatric Quality of Life Inventory 4.0 (start measures) were obtained and then merged with the survey data. Nine mapping algorithms were developed using the HUI3 scores as dependent variables in ordinary least squares regressions along with the start measures, the Autism Diagnostic Observation Schedule, to measure severity, child age, and cognitive ability as independent predictors. In‐sample cross‐validation was conducted to evaluate predictive accuracy. Multiple imputation techniques were used for missing data. The average age for children with ASDs in this study was 8.4 (standard deviation = 3.5) years. Almost half of the children (47%) had cognitive impairment (IQ ≤ 70). Total scores for all of the outcome measures were significantly associated with the HUI3 score. The algorithms can be applied to clinical studies containing start measures of children with ASDs to predict QALYs gained from interventions. Autism Res 2014, 7: 649–663.

Job and career satisfaction among pharmacy preceptors.

Objectives. To examine the perceived benefit of job and career satisfaction among pharmacist preceptors and to explore other factors that might influence satisfaction. Methods. A cross-sectional self-administered survey instrument was mailed to pharmacists in the South Central region of the United States who had active 2010 licenses to investigate whether being a pharmacist preceptor increases job and career satisfaction. Results. Twenty-three percent of the 363 respondents were active preceptors and 62% of these reported that they had been preceptors at some point in the past. Being an active preceptor was significantly related to increased job satisfaction (p = 0.01) but not to career satisfaction. Having a perceived benefit of continuing education and being professionally challenged at work also were associated with increased job and career satisfaction (p < 0.001). Conclusions. Pharmacist preceptors have higher levels of self-reported job satisfaction.

Progress in measuring family spillover effects for economic evaluations.

Despite considerable progress in measuring family spillover effects for economic evaluations, much work remains. This editorial describes recent advances in the field and identifies areas for future research. In particular, we point out the need to clarify the potential for double-counting from including spillover effects related to caregiver time and spillover effects related to family quality of life outcomes in Reference Case analyses. We believe that research on family spillover effects has the potential to increase interest in the field of economic evaluation and its use as a tool for decision making.

Academic Help-Seeking Behavior Among Student Pharmacists

Objectives. To identify factors associated with academic help-seeking behavior among student pharmacists at a public university. Methods. Semi-structured focus group interviews were conducted to explore in depth perceptions of facilitators of and barriers to the help-seeking behavior and academic achievement of student pharmacists who had received a D or F grade in any year. A 4-part survey instrument was developed and administered to all student pharmacists and included sections for (1) attitudes and academic help-seeking behavior, (2) health status, (3) demographics, and (4) open comments. A structural equation modeling approach was used to assess relationships among domains of interest. Results. Three student focus groups noted that helpfulness of faculty members and school administrators were 2 prominent facilitators of help-seeking behavior and academic achievement. Diminished quality of life caused by stress and depression was the primary barrier to help-seeking and achievement. Three hundred four (68.6%) student pharmacists completed the survey instrument. Academic help-seeking behavior was influenced mostly by perceived academic competence and perceived faculty helpfulness. In contrast, ambivalence and perception of help-seeking as threatening were 2 factors that were negatively associated with academic help-seeking behavior. Conclusions. Academic help-seeking behavior was positively related to greater perceived academic competence and positive relationships among student pharmacists and faculty members.

National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment

The National Database for Autism Research (NDAR) is a US National Institutes of Health (NIH)-funded research data repository created by integrating heterogeneous datasets through data sharing agreements between autism researchers and the NIH. To date, NDAR is considered the largest neuroscience and genomic data repository for autism research. In addition to biomedical data, NDAR contains a large collection of clinical and behavioral assessments and health outcomes from novel interventions. Importantly, NDAR has a global unique patient identifier that can be linked to aggregated individual-level data for hypothesis generation and testing, and for replicating research findings. As such, NDAR promotes collaboration and maximizes public investment in the original data collection. As screening and diagnostic technologies as well as interventions for children with autism are expensive, health services research (HSR) and health technology assessment (HTA) are needed to generate more evidence to facilitate implementation when warranted. This article describes NDAR and explains its value to health services researchers and decision scientists interested in autism and other mental health conditions. We provide a description of the scope and structure of NDAR and illustrate how data are likely to grow over time and become available for HSR and HTA.

Impact of emergency contraception status on unintended pregnancy: observational data from a women´s health practice

Objective: This study aimed to determine if nonprescription emergency contraception (EC) availability impacted self-reported unintended pregnancy rates and to assess women’s knowledge and awareness of EC prior to and after nonprescription availability. Methods: A survey regarding contraception use and knowledge was verbally administered to a cross-sectional, convenience sample of 272 pregnant women receiving prenatal care at a large urban community women’s clinic between August 2003 and October 2008. Statistical analyses determined the differences between two groups (before [BA] and after, [AA] non-prescription EC availability in the U.S. drug market) in terms of self-reported unintended pregnancy rates, knowledge and awareness of EC. Results: The AA group reported higher incidence of unintended pregnancy when compared to the BA group (90.7% vs. 72.7%, P = 0.0172). The majority of both groups reported that they were not using any contraception at the time of conception (BA-84.4%; AA-83.3%). There was no significant difference in the participants’ awareness of EC between the two groups (BA-46.8% vs. AA-43.0%) nor was there a significant difference between the two groups in the self-reported willingness to use EC in the future (BA-53.1% vs. AA-63.4%). However, among participants who were unaware of EC, 61% reported they would consider using it in the future after receiving brief EC counseling from a pharmacist or student pharmacist. Neither age nor pregnancy intention was associated with self-reported EC awareness but there was an association with income (P = 0.0410) and education (P = 0.0021). Conclusion: The change from prescription-only to non-prescription status of EC in the U.S. drug market did not impact the unintended pregnancy rate in this patient population. Lack of knowledge and awareness is still a major barrier to widespread EC use.