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1.  Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer 
Background
Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based on three legacy instruments.
Methods
Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA), and equating items using Rasch modeling.
Results
We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107 items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively easy measurement properties, whereas YASCC’s underlying HRQOL was on the middle to higher levels.
Conclusions
Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine this tool, especially adding more challenging items.
doi:10.1007/s11136-011-0055-9
PMCID: PMC3328688  PMID: 22101901
Childhood cancer; measurement; quality of life; Rasch analysis; young adult survivor
2.  Differential item functioning in quality of life measure between children with and without special health care needs 
Objectives
Limited studies consider the effect of differential item functioning (DIF) on health-related quality of life (HRQOL) comparisons between ill and health children. The objective is to assess DIF and compare HRQOL between children with special health care needs (CSHCN) and children without needs.
Methods
Data were collected from 1195 families of children enrolled in Florida’s public insurance programs. HRQOL was measured using physical, emotional, social, and school functioning of the PedsQL. We identified CSHCN using the CSHCN Screener and assessed DIF related to CSHCN using a multiple group-multiple indicator-multiple cause (MG-MIMIC) method. We assessed the impact of DIF by examining expected item/test scores and item/test information function. We tested the discrepancy between underlying HRQOL scores of both groups before and after DIF calibration (allowing parameters of DIF items to be different and DIF-free items to be the same across both groups).
Results
Two (25%) and 3 items (60%) of physical and school functioning, respectively, were identified with non-uniform DIF, and two items (40%) of social functioning were identified with uniform DIF. Expected item/test scores and item/test information function suggest the impact of DIF is minimal. Before DIF calibration, HRQOL in CSHCN was more impaired than children without needs (effect size −1.04, − 0.74, −0.96, and −0.98 for physical, emotional, social and school functioning, respectively). After DIF calibration, the discrepancy was increased slightly.
Conclusions
Although 30% of items in the PedsQL were identified with DIF related to CSHCN and children without needs, the impact of DIF is minimal.
doi:10.1016/j.jval.2011.03.004
PMCID: PMC3173710  PMID: 21914509
Children; differential item functioning; health-related quality of life; item response theory
3.  Head-to-head comparisons of quality of life instruments for young adult survivors of childhood cancer 
Purpose
Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared psychometric properties of two survivor-specific instruments, the Quality of Life-Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS).
Methods
Data from 151 YASCC who enrolled in Cancer/Tumor Registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index (CFI), and root mean square error of approximation (RMSEA). We examined convergent/discriminant validity by comparing Pearson’s correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments vs. heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments.
Results
YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity.
Conclusions
Neither instrument is superior. Item response theory is suggested to select high quality items from different instruments to improve HRQOL measure for YASCC.
doi:10.1007/s00520-011-1315-5
PMCID: PMC3320678  PMID: 22105163
Childhood cancer; young adult survivor; quality of life; measurement; psychometrics
4.  Quality of life information and trust in physicians among families of children with life-limiting conditions 
Patient related outcome measures  2010;2010(1):141-148.
Purpose
To examine information that parents of children with life-limiting conditions want to discuss with children’s physicians to assist decision-making, and whether the desire for this information is associated with parents’ trust in physicians.
Study design
A cross-sectional study using a telephone survey.
Patients and methods
Subjects comprised a random sample of 266 parents whose children were enrolled in Florida’s Medicaid Program. Parents were asked if they wanted to discuss information related to their children’s treatment, including quality of life (QOL), pain relief, spiritual beliefs, clinical diagnosis/laboratory data, changes in the child’s behavior due to treatment, changes in the child’s appearance due to treatment, chances of recovery, and advice from the physician and family/friends. The Wake Forest Physician Trust Scale was used to measure parents’ trust in physicians. We tested the relationships between parents’ age, race/ethnicity, education, parent-reported children’s health status, and the desired information. We also tested whether the desire for information was associated with greater trust in physicians.
Results
Most parents wanted information on their children’s QOL (95%), followed by chance of recovery (88%), and pain relief (84%). Compared with nonHispanic whites, nonHispanic blacks and Hispanics showed a greater desire for information and a chance to discuss QOL information had greater trust in their children’s physicians than other information after adjusting for covariates (P < 0.05).
Conclusions
Among children with life-limiting conditions, QOL is the most frequently desired information that parents would like to receive from physicians as part of shared decision-making. Parents’ desire for QOL information is associated with greater trust in their children’s physicians.
PMCID: PMC3134229  PMID: 21760753
children; information; life-limiting condition; quality of life; shared decision-making
5.  Auditory Late Effects of Childhood Cancer Therapy: a report from the Children’s Oncology Group 
Pediatrics  2010;125(4):e938-e950.
Children treated for childhood malignancies may be at risk for early or delayed onset hearing loss that can impact learning, communication, school performance, social interaction, and overall quality of life (QOL). Survivors at particular risk include those treated with platinum compounds (cis-and/or carboplatin) for neuroblastoma, hepatoblastoma, osteosarcoma, or germ cell tumors and/or those treated with radiation impacting the ear at doses greater than 30 Gray (Gy) for pediatric head and neck tumors. The aims of the Auditory/Hearing Late Effects Task Force of Children’s Oncology Group in this report were: 1) to review ototoxicity resulting from childhood cancer therapy including platinum compounds (cisplatin and carboplatin) and radiation; 2) to describe briefly cochlear pathophysiology and genetics of cisplatin-related hearing loss; 3) to explain the impact of hearing loss resulting from chemotherapy and radiation; and 4) to offer recommendations regarding evaluation and management of pediatric patients at risk for treatment-related hearing loss. A questionnaire is included as a tool to assist pediatricians in assessment.
doi:10.1542/peds.2009-1597
PMCID: PMC3106205  PMID: 20194279
Ototoxicity; Carboplatin; Cisplatin; Radiation; Hearing loss
6.  Long-Term Outcomes of Infants with Very Low Risk Wilms Tumor Treated with Surgery Alone on National Wilms Tumor Study -5 
Annals of surgery  2010;251(3):555-558.
Structured Abstract
Objective
To determine the event-free survival (EFS) and overall survival (OS) of children with very low risk Wilms tumor (VLRWT) treated with surgery only.
Background
Previous studies suggested that post-operative chemotherapy had not improved the prognosis of children with VLRWT. Seventy-seven children < 24 months of age with small (<550 gm) Stage I favorable histology Wilms tumors were treated with surgery only. This study was closed based on stopping rules to insure the 2-year EFS was ≥ 90%.
Methods
Seventy-seven children were assessed for EFS and OS. Twenty-one of these patients enrolled at the time of closure were recalled, treated with dactinomycin and vincristine (regimen EE4A), and censored for analysis thereafter. One hundred and eleven children subsequently treated with EE4A were available for comparison.
Results
Median follow-up of surviving patients was 8.2 years for surgery only (range 1.9 to 11.8 years) and 5.2 years for the EE4A group (range 1.6 to 8.9 years). The estimated 5-year EFS for surgery only was 84% (95% confidence interval [CI]: 73%, 91%); for the EE4A patients it was 97% (95% CI: 92%, 99%, p=0.002). One death was observed in each treatment group. The estimated 5-year OS was 98% (95% CI: 87%, 99%) for surgery only and 99% (95% CI: 94%, 99%) for EE4A (p=0.70).
Conclusion
The surgery-only EFS was lower than anticipated but, coupled with a much higher than anticipated salvage rate of the chemotherapy naïve patients whose disease recurred, led to an observed long-term overall survival equivalent to that seen with 2-drug chemotherapy. This approach to the treatment of patients with very low risk Wilms tumor eliminates the toxic side-effects of chemotherapy for a large majority of patients. A follow-up study is underway to confirm these findings.
doi:10.1097/SLA.0b013e3181c0e5d7
PMCID: PMC2836016  PMID: 20142733
7.  Quality of life information and trust in physicians among families of children with life-limiting conditions 
Purpose:
To examine information that parents of children with life-limiting conditions want to discuss with children’s physicians to assist decision-making, and whether the desire for this information is associated with parents’ trust in physicians.
Study design:
A cross-sectional study using a telephone survey.
Patients and methods:
Subjects comprised a random sample of 266 parents whose children were enrolled in Florida’s Medicaid Program. Parents were asked if they wanted to discuss information related to their children’s treatment, including quality of life (QOL), pain relief, spiritual beliefs, clinical diagnosis/laboratory data, changes in the child’s behavior due to treatment, changes in the child’s appearance due to treatment, chances of recovery, and advice from the physician and family/friends. The Wake Forest Physician Trust Scale was used to measure parents’ trust in physicians. We tested the relationships between parents’ age, race/ethnicity, education, parent-reported children’s health status, and the desired information. We also tested whether the desire for information was associated with greater trust in physicians.
Results:
Most parents wanted information on their children’s QOL (95%), followed by chance of recovery (88%), and pain relief (84%). Compared with nonHispanic whites, nonHispanic blacks and Hispanics showed a greater desire for information and a chance to discuss QOL information had greater trust in their children’s physicians than other information after adjusting for covariates (P < 0.05).
Conclusions:
Among children with life-limiting conditions, QOL is the most frequently desired information that parents would like to receive from physicians as part of shared decision-making. Parents’ desire for QOL information is associated with greater trust in their children’s physicians.
doi:10.2147/PROM.S12564
PMCID: PMC3134229  PMID: 21760753
children; information; life-limiting condition; quality of life; shared decision-making
8.  Late Effects on the Urinary Bladder in Patients Treated for Cancer in Childhood: A Report from the Children’s Oncology Group 
Pediatric blood & cancer  2009;52(4):439-446.
Childhood cancer survivors who have had pelvic or central nervous system surgery or have received alkylator-containing chemotherapy or pelvic radiotherapy as part of their cancer therapy may experience urinary bladder late effects. This article reviews the medical literature on long-term bladder complications in survivors of childhood cancer and outlines the Children’s Oncology Group Long Term Followup (COG LTFU) Guidelines related to bladder function. An overview of the treatment of bladder late effects and recommended counseling for survivors with these complications are presented.
doi:10.1002/pbc.21826
PMCID: PMC2917580  PMID: 18985721
urinary tract; urinary bladder; late effect; child; neoplasm

Results 1-8 (8)