Biomedical subjects

J W Varni

Publications and source records attributed to J W Varni.

At least 19 recordsLinked to original sources

PubMed2006

Religious coping and problem-solving by couples faced with prostate cancer.

Religion can be an important resource for people struggling with chronic illness. Problem-solving skills have also been shown to be helpful. This study examined whether turning to religion as a coping resource would be associated with better problem-solving in couples trying to manage challenges associated with prostate cancer. The sample was 101 patients with prostate cancer and their wives. Wives completed the Social Problem-Solving Inventory--Revised at baseline (T1) and 10 weeks later (T2). Patients and their wives also completed a measure that included items on religious coping. These items were used to classify couples into four groups based on whether one or both members engaged in religious coping: (1) husband only, (2) wife only, (3) both husband and wife, and (4) neither husband nor wife. From T1 to T2, wives who used religious coping along with their husbands (group 3) showed a significantly greater reduction in dysfunctional problem-solving (specifically, on impulsive/careless problem-solving) in comparison with wives who used religious coping while their husbands did not (group 2). Findings suggest that when couples share in turning to religion as a source of coping, this may be associated with improved problem-solving, but sole engagement in religious coping by wives may be associated with worse problem-solving.

Adaptation, Psychological↗

PubMed2004

Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy.

The Pediatric Quality of Life Inventory (PedsQL) is a relatively new instrument developed in the US to assess health-related quality of life (HRQL) in healthy and ill children and adolescents. It is quick and easy to use, suitable for assessment by children and parents and based on a modular approach with a generic measure addressing all general domains of HRQL and disease-specific modules. We report here the results of translating the original US generic core instrument and the cancer module into German and testing the German PedsQL in samples of paediatric patients who have been treated for cancer or epilepsy. Like in studies with the original instrument, score distributions tended to be skewed toward higher HRQL, but a full response range was demonstrated for each item. The German PedsQL is reliable in terms of internal consistency with the majority of scales exceeding a Cronbach's alpha of 0.70. Clinical validity was confirmed by differences between the cancer and epilepsy groups in the expected direction and by the ability of the PedsQL to discriminate between subjects with different degrees of medical and psychosocial sequelae. Comparing our findings to US results, the German PedsQL seems to be equivalent to the original version. Future methodologic research should evaluate construct validity, sensitivity and responsiveness, and test the usefulness of the instrument in other clinical populations and healthy children.

Adolescent↗

PubMed2004

Measuring quality of life in children referred for psychiatric problems: psychometric properties of the PedsQL 4.0 generic core scales.

OBJECTIVE: The aim of this study was to assess the psychometric properties of the Dutch translation of the Pediatric Quality of Life Inventory (PedsQL 4.0) generic core scales and assess its usefulness in measuring quality of life (QoL) in a child psychiatric population. METHODS: Reliability and validity of the PedsQL were assessed in 310 referred children (ages 6-18 years) and a comparison group consisting of 74 non-referred children (ages 7-18 years), and the parents in both groups. RESULTS: Confirmatory factor analysis resulted in a four-factor solution. Internal consistency reliability for the PedsQL Total Scale Score (alpha = 0.84 child self-report, alpha = 0.87 parent proxy-report), Psychosocial Health Score (alpha = 0.70 child self-report, alpha = 0.81 parent proxy-report), and most subscale scores were acceptable for group comparisons. Correlations between scores of fathers and mothers were large. Criterion-related validity was demonstrated by significantly lower PedsQL scores for referred vs. non-referred children. Significant correlations between PedsQL scales and measures of psychopathology showed convergent validity. Small correlations between PedsQL scales and intelligence of the child evidenced discriminant validity. CONCLUSION: The PedsQL seems a valid instrument in measuring QoL in children referred for psychiatric problems.

Adolescent↗

PubMed2003

The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis.

OBJECTIVES: To investigate the relationship between health-related quality of life (HRQL), experience of pain and pain coping strategies in children with juvenile idiopathic arthritis (JIA). To compare reports describing these variables obtained from children and their parents. METHODS: Participants were 59 children aged 8 to 18 yr with JIA and their parents. Parents and children completed the PedsQL generic core scales and arthritis module, the visual analogue scale of the Varni-Thompson Pediatric Pain Questionnaire, and the Waldron/Varni Pediatric Pain Coping Inventory. Parents rated children's functional disability using the Childhood Health Assessment Questionnaire. RESULTS: Parents reported significantly lower scores (indicating worse HRQL) than children on five of the eight PedsQL scales rating children's HRQL. Parents and children reported a significant negative relationship between pain levels and the PedsQL scores assessing children's physical, emotional and social functioning. They also reported a significant negative relationship between scores on several pain coping scales and scores on the PedsQL scales. However, the pattern of these relationships varied for reports from parents and children. CONCLUSIONS: Pain intensity and pain coping strategies have a significant and independent relationship with several domains that comprise the HRQL of children with JIA. However, parents and children have differing perceptions of the nature of these relationships. The differences emphasize the importance of clinicians obtaining information about children's HRQL, pain levels and pain coping strategies from both parents and children.

Adaptation, Psychological↗

PubMed2001

PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

BACKGROUND: The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. 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 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions. METHODS: The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. RESULTS: Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. CONCLUSION: The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.

Acute Disease↗

PubMed2001

Parents' Perceptions of Primary Care: measuring parents' experiences of pediatric primary care quality.

OBJECTIVE: A measure of pediatric primary care quality that is brief, practical, reliable, and valid would be useful to patients and pediatricians, policymakers, and health system leaders. Parents have a unique perspective from which to report their experiences with their child's primary care, and these reports may be valid indicators of pediatric primary care quality. The research objective was to develop a brief parent report of their children's primary care, the Parent's Perceptions of Primary Care measure (P3C), and to test its reliability and validity as a measure of pediatric primary care quality. STUDY DESIGN: The P3C was based on the elements of primary care as defined by the Institute of Medicine. Pretesting of domain content and item clarity was accomplished via focus interviews. The P3C was developed in English and translated to Spanish, Vietnamese, and Tagalog. The 23-item P3C yields a total score, as well as subscale scores for continuity, access, contextual knowledge, communication, comprehensiveness, and coordination. The P3C was administered to 3371 parents of children in kindergarten through sixth grades in a large, urban school district. PRINCIPAL FINDINGS: The percentage of missing values for the overall sample was 1.88%, indicating acceptable feasibility. Range of measurement, assessed via floor and ceiling effects, was moderate to good. Cronbach's coefficient alpha, an indicator of scale internal consistency reliability, was 0.95 for the P3C total scale. Factor analysis supported the subscale structure, and P3C scores were higher for children with health insurance, whose parents completed the survey in English, and who had a regular physician. P3C scores were positively related to parent reports of the child's health-related quality of life. CONCLUSIONS: The P3C is a practical, reliable, and valid measure of parents' reports of pediatric primary care quality. This brief measure could be used alone, or in conjunction with other measures, to enhance outcomes and evaluate the impact of systems changes on the delivery of the main elements of primary care.

Analysis of Variance↗

PubMed1999

The Pediatric Cancer Quality of Life Inventory: a modular approach to measuring health-related quality of life in children with cancer.

Measurement of pediatric cancer patients' health-related quality of life (HRQL) in phase III randomized, controlled clinical trials is being recognized increasingly as an essential component in evaluating the comprehensive health outcomes of modern anti-neoplastic treatment protocols. Use of a brief core measure of HRQL plus disease-specific symptom modules is a way to assess specific HRQL outcomes with a minimum of subject burden. Demonstrating a measure's feasibility, reliability and validity also represents children's ability to provide reliable and valid responses to HRQL questions. The Pediatric Cancer Quality of Life Inventory (PCQL) Modular Approach consists of a 15-item core measure of HRQL and 2 specific symptom modules: pain and nausea. To validate a patient-report form and a parent-report form, the PCQL was administered to 291 pediatric cancer patients and to their parents. Feasibility and range of measurement, as well as patient-parent concordance, were assessed. Internal consistency reliability was assessed via Cronbach's alpha. Validity was determined by the known-groups approach and by correlating PCQL scores with days missed from school. Patients had minimal missing data, and the range of measurement for the items was good. Patient-parent concordance was large but not perfect. For both patient and parent forms, internal consistency reliability of the PCQL core scale (0.83 and 0. 86, respectively) was strong. The internal consistency reliabilities of the 2 symptom modules for both patient and parent forms were in the acceptable range for group comparisons. Regarding clinical validity, the core scale and the 2 symptom modules distinguished between patients on and off treatment for both patient and parent reports. Further, both patient and parent reports correlated with days of missed school in the past 6 and 12 months. The PCQL Modular Approach has demonstrated acceptable internal consistency reliability and clinical validity for both patient-report and parent-report forms. By implication, children are capable of providing reliable and valid responses to these HRQL questions.

Child↗

PubMed1999

Toddlers with limb deficiency: conceptual basis and initial application of a functional status outcome measure.

OBJECTIVE: To describe the conceptual foundation, development, and initial psychometric analyses of a new outcome measure of functional status in toddlers with limb deficiency. DESIGN: Parents of children with limb deficiency completed self-report measures during a routine medical clinic visit. SETTING: Outpatient orthopedic pediatric clinic. PARTICIPANTS: Twenty parents (mothers) of children (ages 1 to 4 years) with acquired or congenital limb deficiency. MAIN OUTCOME MEASURE: The newly developed Child Amputee Prosthetics Project-Functional Status Inventory for Toddlers (CAPP-FSIT). RESULTS: Estimates of internal consistency reliability of the measure are high, suggesting conceptual congruence among the items. Initial validity studies confirm the CAPP-FSIT differentiates between toddlers with upper limb deficiency and lower limb deficiency in terms of functional activity and prosthesis use. The new measure does not appear to be contaminated by gender or socioeconomic status. CONCLUSION: The CAPP-FSIT is a promising measure for assessing functional abilities in toddlers with limb deficiency.

Activities of Daily Living↗

PubMed1999

The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement.

The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) has been developed to be a standardized assessment instrument to assess systematically pediatric cancer patient's health-related quality of life (HRQOL) outcomes. Multidimensional serial measurement of pediatric cancer patients' HRQOL in Phase III randomized controlled clinical trials is increasingly being recognized as an essential component in evaluating the comprehensive health outcomes of modern antineoplastic treatment protocols. The 32-item PCQL-32 short form was empirically derived from the PCQL long form (84-87 items), which was administered to 291 pediatric cancer patients and their parents during various stages of treatment. 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 PCQL-32 scales and the total scale score. Feasibility for the PCQL-32 was very good, with less than .01% missing values. Range of measurement was full, with no ceiling effects (higher symptoms/problems) and low to moderate floor effects (lower symptoms/problems). The PCQL-32 demonstrated very good feasibility and range of measurement. In its short form, the PCQL-32 is practical for Phase III clinical trials. Future studies will test the utility of the PCQL-32 as a brief serial measure for monitoring the HRQOL outcomes for children and adolescents with cancer.

Adolescent↗

PubMed1999

The PedsQL: measurement model for the pediatric quality of life inventory.

BACKGROUND: Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations. METHODS: The PedsQL is a brief, standardized, generic assessment instrument that systematically assesses patients' and parents' perceptions of HRQOL in pediatric patients with chronic health conditions using pediatric cancer as an exemplary model. The PedsQL is based on a modular approach to measuring HRQOL and consists of a 15-item core measure of global HRQOL and eight supplemental modules assessing specific symptom or treatment domains. The PedsQL was empirically derived from data collected from 291 pediatric cancer patients and their parents at various stages of treatment. RESULTS: Both reliability and validity were determined. Cronbach's alpha coefficients for the core measure (alpha = .83 for patient and alpha = .86 for parent) were acceptable for group comparisons. Alphas for the patient self-report modules generally ranged from .70 to .89. Discriminant or clinical validity, using the known-groups approach, was demonstrated for patients on- versus off-treatments. The 11 scales showed small-to-medium positive intercorrelations, supporting the multidimensional measurement model. Further construct validity was demonstrated via a multimethod-multitrait matrix using standardized psychosocial questionnaires. CONCLUSION: The results support the PedsQL as a reliable and valid measure of HRQOL. The PedsQL core and modular design makes it flexible enough to be used in a variety of research and clinical applications for pediatric chronic health conditions.

Activities of Daily Living↗

PubMed1998

The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity.

BACKGROUND: Multidimensional measurement of pediatric cancer patients' health-related quality of life (HRQOL) in Phase III randomized controlled clinical trials is being recognized increasingly as an essential component in evaluating the comprehensive health outcomes of modern antineoplastic treatment protocols. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) is a standardized patient self-report and parent proxy-report assessment instrument designed to assess systematically pediatric cancer patients' HRQOL outcomes. METHODS: To validate a patient-report form and a parent-report form, the PCQL-32 was administered to 291 pediatric cancer patients and to their parents. Both forms yield a total score and five a priori multidimensional scales. Clinical validity was determined by the known-groups approach by comparing patients classified as either on or off treatment. To determine construct validity, a battery of standardized psychosocial measures was administered and a multitrait-multimethod matrix was constructed. RESULTS: For both patient and parent forms, internal consistency reliability of the PCQL-32 total scale was high (0.91 and 0.92, respectively). The internal consistency reliabilities of the five component scales for both patient and parent forms were in the acceptable range for group comparisons. With regard to clinical validity, the PCQL-32 total scale and the disease/treatment and physical functioning scales of the PCQL-32 distinguished between patients on and off treatment for both patient- and parent-report. The results of the multitrait-multimethod matrix approach were consistent with hypotheses and lent evidence for the construct validity of the patient and parent forms of the PCQL-32 total scale and the psychological functioning, social functioning, cognitive functioning, physical functioning, and disease/treatment scales. CONCLUSIONS: The PCQL-32 has demonstrated acceptable internal consistency reliability, clinical validity, and construct validity for both patient-report and parent-report forms. Further field testing of the PCQL-32 will determine its practicality and utility in multisite pediatric cancer randomized controlled clinical trials.

Adolescent↗

PubMed1998

Functional status in limb deficiency: development of an outcome measure for preschool children.

OBJECTIVE: To develop an outcome measure of functional status in preschool children with limb deficiency. DESIGN: Parents of preschool children with limb deficiency completed self-report measures during a routine medical clinic visit. SETTING: Outpatient pediatric clinic. PARTICIPANTS: Fifty-two parents of children (ages 4 to 7) with acquired or congenital limb deficiency. MAIN OUTCOME MEASURE: The newly developed Child Amputee Prosthetics Project-Functional Status Inventory for Preschool children (CAPP-FSIP). RESULTS: Initial psychometric studies indicate high internal consistency reliability of the new instrument. Content validity was established through expert clinician review. Initial construct validity analyses confirm that the CAPP-FSIP discriminates between children with upper and lower deficiency and their prosthesis use for functional activities. CONCLUSION: The CAPP-FSIP is a promising new measure for evaluating preschool age children with limb deficiency.

Activities of Daily Living↗

PubMed1998

The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance.

Intensive antineoplastic treatment protocols have been developed and implemented in controlled clinical trials with the goal of improving the survival of pediatric cancer patients. Multidimensional health outcome evaluation of this cohort of pediatric cancer patients being treated with these modern regimens is essential in order to enhance health-related quality of life. The Pediatric Cancer Quality of Life Inventory (PCQL) was developed to be a standardized assessment instrument to assess systematically pediatric cancer patient's health-related quality of life outcomes. The PCQL was administered to 291 pediatric cancer patients and their parents at various stages of treatment. The aim of the present study was to present the development, descriptive statistics, and cross-informant variance for the PCQL items. Large variability in symptoms and health-related problems were found as expected given the wide heterogeneity in the patient population sampled. Patient/parent concordance on individual items averaged in the medium effect size range. The findings underscore the importance of measuring both patient report and parent report of patient symptoms and problems in pediatric cancer health-related quality of life assessment.

Activities of Daily Living↗

PubMed1998

Effects of pediatric chronic physical disorders on child and family adjustment.

Research conducted primarily over the past 5-8 years on the psychosocial effects of pediatric chronic physical disorders on children and their families is reviewed. A large body of studies show that both children and their mothers, as groups, are at increased risk for psychosocial adjustment problems compared to peers, but that there is considerable individual variation in outcome. Since the last review on this topic (Eiser, 1990a), many studies have been conducted to identify risk and resistance factors associated with differences in adjustment among these children and their mothers. Improvements are noted in the theoretical basis for this work, programmatic nature of some of the research, and efforts at producing clinically relevant information. Evaluations of interventions, however, are lagging. Critical issues and future directions regarding developmental approaches, theory, method, measurement, and intervention are discussed.

Adjustment Disorders↗

PubMed1997

Stress, social support and negative affectivity in children with newly diagnosed cancer: a prospective transactional analysis.

Conceptually-driven investigations on the potentially modifiable predictors of individual differences among children with newly-diagnosed cancer may facilitate the identification of pediatric cancer patients at risk for maladjustment during the profound adversity associated with this life-threatening disease and aversive biomedical treatment. Within a risk and resistance theoretical framework, perceived stress and social support were investigated concurrently and prospectively within an exploratory design as predictors of negative affectivity (anxiety and depressive symptoms composite construct) in newly-diagnosed pediatric cancer patients at Time 1 (within one month after diagnosis), Time 2 (6 months postdiagnosis), and Time 3 (9 months postdiagnosis). Hierarchical multiple regression analysis findings indicate that perceived stress and social support have direct and independent effects on negative affectivity principally at the 9-month time interval. These findings are discussed in terms of the cognitive-behavioral treatment implications for enhancing child adjustment during the transition from the initial cancer diagnosis and aversive biomedical treatment to subsequent school and social reintegration.

Adolescent↗

PubMed1997

Prosthesis satisfaction outcome measurement in pediatric limb deficiency.

OBJECTIVE: To describe the development and initial psychometric properties of a new outcome measure to assess satisfaction with prosthesis in children with limb deficiencies. DESIGN: Parents of children with limb deficiency were surveyed during routine outpatient clinic visits. SETTING: Two outpatient pediatric clinics. PARTICIPANTS: Ninety-seven parents of children with limb deficiency aged 1 to 17 years. MAIN OUTCOME MEASURE: The newly developed Child Amputee Prosthetics Project-Prosthesis Satisfaction Inventory (CAPP-PSI). RESULTS: Internal consistency reliability is high. Zero-order correlations with prosthesis wear/use patterns and with parent ratings of prosthesis appearance provide support for the construct validity of the CAPP-PSI. CONCLUSION: The CAPP-PSI is a promising, brief, parent-administered inventory for the assessment of prosthesis satisfaction in children with limb deficiency. It may be useful in future research for predicting prosthesis wear and use patterns in this population.

Activities of Daily Living↗

PubMed1996

Effects of perceived stress on pediatric chronic pain.

The dearth of theoretically driven research on the predictors of pediatric chronic pain may unwittingly contribute to needless suffering in children and adolescents by underinvestigating a potentially treatable condition. The objective of the present study was to investigate the hypothesized predictive effects of perceived stress on pediatric chronic pain intensity in 148 children and adolescents. Consistent with the a priori Biobehavioral Model of Pediatric Pain, higher perceived stress was predictive of greater pediatric pain intensity. The results are discussed with regard to the implications for cognitive-behavioral pediatric pain treatment.

Adolescent↗

PubMed1996

Functional status in children with limb deficiency: development and initial validation of an outcome measure.

OBJECTIVE: To develop a new outcome measure in response to the increasing demands for cost effectiveness analyses and empirically derived outcome instruments in the treatment of pediatric limb deficiency. This article describes the development, refinement, and initial psychometric properties of the Child Amputee Prosthetics Project-Functional Status Inventory (CAPP-FSI). DESIGN: Parents of children with limb deficiency were surveyed during routine clinic visits. SETTING: Two outpatient pediatric clinics. PARTICIPANTS: Seventy-five parents and their children with limb deficiency (ages 8 to 17 years) participated in the study as part of annual physical evaluations or routine follow-up care. MAIN OUTCOME MEASURE: The newly developed CAPP-FSI. RESULTS: Internal consistency reliability (Cronbach's alpha) = .96 for the CAPP-FSI. Content validity is described and initial construct validity is empirically confirmed. CONCLUSION: The CAPP-FSI is a promising assessment instrument for measuring important health outcomes in children with upper or lower limb deficiency.

Activities of Daily Living↗