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Selected AbstractsFamily, demographic and illness-related determinants of HRQL in children with brain tumours in the first year after diagnosis,PEDIATRIC BLOOD & CANCER, Issue 6 2009Anthony Penn MBBCh, MRCPCH Abstract Aims To evaluate the relationship between parent- and child-report Health-Related Quality of Life (HRQL) and demographic, tumour and family variables in children with a brain tumour in the first year after diagnosis and to identify determinants of HRQL at 12 months. Procedure Longitudinal prospective study: Semi-structured interviews took place approximately 1, 6 and 12 months after diagnosis. HRQL was measured using the self- and parent-report PedsQL 4.0 Total Scale Score. Tumour and treatment variables considered included tumour site and grade, hydrocephalus at diagnosis, chemotherapy and radiotherapy. Family variables included measures of family function, family support and family stress, the primary carer's coping strategies and symptoms of depression and anxiety. Univariate analyses were used at all three time points, and to identify potential early predictors of HRQL at 1 year. Regression analysis was then used to identify the most important determinants of HRQL at 1 year. Results Thirty-five patients completed the 12-month interviews. There were consistent significant negative correlations between concurrent family impact of illness and parent and self-report HRQL, and positive correlations between concurrent family support and parent-report HRQL. Treatment with radio- or chemotherapy correlated with child-report HRQL only at some time points. Multivariate analysis showed infratentorial tumour site, and poor HRQL at 1 month best predicted poor self- and parent-report HRQL at 12 months. Conclusion Children with infratentorial tumours and poor HRQL early after diagnosis tend to have poor HRQL at 1 year. While family factors are important modulators of concurrent HRQL, they do not appear important in predicting HRQL. Pediatr Blood Cancer 2009;53:1092,1099. © 2009 Wiley-Liss, Inc. [source] The PedsQLÔ in pediatric cancerCANCER, Issue 7 2002Reliability, cancer module, multidimensional fatigue scale, validity of the pediatric quality of life inventoryÔ generic core scales Abstract BACKGROUND The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2,18 years. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL disease specific modules. The PedsQL Multidimensional Fatigue Scale was designed to measure fatigue in pediatric patients. The PedsQL 3.0 Cancer Module was designed to measure pediatric cancer specific HRQOL. METHODS The PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module were administered to 339 families (220 child self-reports; 337 parent proxy-reports). RESULTS Internal consistency reliability for the PedsQL Generic Core Total Scale Score (, = 0.88 child, 0.93 parent report), Multidimensional Fatigue Total Scale Score (, = 0.89 child, 0.92 parent report) and most Cancer Module Scales (average , = 0.72 child, 0.87 parent report) demonstrated reliability acceptable for group comparisons. Validity was demonstrated using the known-groups method. The PedsQL distinguished between healthy children and children with cancer as a group, and among children on-treatment versus off-treatment. The validity of the PedsQL Multidimensional Fatigue Scale was further demonstrated through hypothesized intercorrelations with dimensions of generic and cancer specific HRQOL. CONCLUSIONS The results demonstrate the reliability and validity of the PedsQL Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module in pediatric cancer. The PedsQL may be utilized as an outcome measure in clinical trials, research, and clinical practice. Cancer 2002;94:2090,106. © 2002 American Cancer Society. DOI 10.1002/cncr.10427 [source] A Self-Report Measure of Clinicians' Orientation toward Integrative MedicineHEALTH SERVICES RESEARCH, Issue 5p1 2005An-Fu Hsiao Objective. Patients in the U.S. often turn to complementary and alternative medicine (CAM) and may use it concurrently with conventional medicine to treat illness and promote wellness. However, clinicians vary in their openness to the merging of treatment paradigms. Because integration of CAM with conventional medicine can have important implications for health care, we developed a survey instrument to assess clinicians' orientation toward integrative medicine. Study Setting. A convenience sample of 294 acupuncturists, chiropractors, primary care physicians, and physician acupuncturists in academic and community settings in California. Data Collection Methods. We used a qualitative analysis of structured interviews to develop a conceptual model of integrative medicine at the provider level. Based on this conceptual model, we developed a 30-item survey (IM-30) to assess five domains of clinicians' orientation toward integrative medicine: openness, readiness to refer, learning from alternate paradigms, patient-centered care, and safety of integration. Principal Findings. Two hundred and two clinicians (69 percent response rate) returned the survey. The internal consistency reliability for the 30-item total scale and the five subscales ranged from 0.71 to 0.90. Item-scale correlations for the five subscales were higher for the hypothesized subscale than other subscales 75 percent or more of the time. Construct validity was supported by the association of the IM-30 total scale score (0,100 possible range, with a higher score indicative of greater orientation toward integrative medicine) with hypothesized constructs: physician acupuncturists scored higher than physicians (71 versus 50, p<.001), dual-trained practitioners scored higher than single-trained practitioners (71 versus 62, p<.001), and practitioners' self-perceived "integrativeness" was significantly correlated (r=0.60, p<.001) with the IM-30 total score. Conclusion. This study provides support for the reliability and validity of the IM-30 as a measure of clinicians' orientation toward integrative medicine. The IM-30 survey, which we estimate as requiring 5 minutes to complete, can be administered to both conventional and CAM clinicians. [source] The quality of life for cancer children (QOLCC) for Taiwanese children with cancer (part II): Feasibility, cross-informants variance and clinical validityPSYCHO-ONCOLOGY, Issue 3 2004Chao-Hsing Yeh The quality of life in childhood cancer (QOLCC) is a research instrument that has been developed to assess the quality of life for children and adolescents who suffer from cancer in Taiwan. The current paper is the second of a two-part series of research reports. Part I is reported in this journal (Yeh et al., 2003). Part II describes the range of measurement, concordance of cross-informants reports, and clinical validity of Taiwanese pediatric cancer children (7,12 years) and adolescents (13,18 years) and their parents/caregivers. Due to the cognitive ability of children and adolescents, data were analyzed for children and adolescent separately. The validity of cross-referenced information between parent and child forms was subsequently examined using Pearson product correlation. The feasibility (percentage of missing values per item) and range of measurement [percentage of minimum (floor effect) and maximum (ceiling effect) possible scores] was calculated for the five QOLCC and the total scale score. The findings of medium to high correlation of the patient/parent responses strongly imply that relevant information might be obtainable through parents when children are unable or unwilling to complete the assessment instrument. Feasibility for the QOLCC was very good. Copyright © 2003 John Wiley & Sons, Ltd. [source] Study of the Reliability and Validity of the Community Health Intensity Rating Scale (CHIRS) in the Turkish CommunityPUBLIC HEALTH NURSING, Issue 3 2007Aysun Çelebio ABSTRACT The purpose of this study was to examine the reliability and validity of the Community Health Intensity Rating Scale (CHIRS) that was translated into the Turkish language and applied in the Turkish community. The CHIRS is a tool that assesses the intensity of need for care of persons/families in the community. The original version of the tool was translated into Turkish, examined for face validity and language appropriateness by the Turkish experts, and then applied to 372 families living in Odemis, Turkey. Significant correlations were found between total scale score (TSS) and total number of household members, and between the TSS and the total number of visits to any health institution within the previous month. In addition, the self-health care needs evaluation scores supported predictive validity. For reliability, min,max values, standard errors and deviations, skewness, and kurtosis coefficients of parameter scores, domain scores, and TSS were examined. The mean TSS was 26.7 (± 5.32) and the mean age of the participants was 35.0 years. For internal consistency, Cronbach's , (.525) and Guttman split-half coefficient (.629) values were established for the TSS. In conclusion, the reliability and validity of the Turkish version of CHIRS have been established. [source] Pediatric Health-Related Quality of Life: Feasibility, Reliability and Validity of the PedsQLÔ Transplant ModuleAMERICAN JOURNAL OF TRANSPLANTATION, Issue 7 2010J. Weissberg-Benchell The measurement properties of the newly developed Pediatric Quality of Life InventoryÔ (PedsQLÔ) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty-eight parents of children ages 2,18 and 274 children ages 5,18 completed both the PedsQLÔ 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self-report and parent proxy-report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self-report ,= 0.93; total scale score for parent proxy-report ,= 0.94). Transplant-specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQLÔ Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants. [source] Parent-proxy report of their children's health-related quality of life: an analysis of 13 878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core ScalesCHILD: CARE, HEALTH AND DEVELOPMENT, Issue 5 2007Richard Reading Parent-proxy report of their children's health-related quality of life: an analysis of 13 878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales . VarniJ. W., LimbersC. A. & BurwinkleT. M. ( 2007 ) Health and Quality of Life Outcomes , 5 , 2 . DOI:10.1186/1477-7525-5-2. Background, Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While paediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete an HRQOL instrument, and reliable and valid parent-proxy report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL DatabaseSM were utilized to test the reliability and validity of parent-proxy report at the individual age subgroup level for ages 2,16 years as recommended by recent Food and Drug Administration (FDA) guidelines. Methods, The sample analysed represents parent-proxy report age data on 13 878 children ages 2,16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. Parents were recruited from general paediatric clinics, sub-specialty clinics and hospitals in which their children were being seen for well-child checks, mild acute illness or chronic illness care (n = 3,718, 26.8%), and from a State Children's Health Insurance Program in California (n = 10 160, 73.2%). Results, The percentage of missing item responses for the parent-proxy report sample as a whole was 2.1%, supporting feasibility. The majority of the parent-proxy report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the total scale scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analysing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium-to-large effect size range. Conclusion, The results demonstrate the feasibility, reliability and validity of parent-proxy report at the individual age subgroup for ages 2,16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as paediatric patient self-report is advocated, there remains a fundamental role for parent-proxy report in paediatric clinical trials and health services research. [source] |