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Parent-proxy Report (parent-proxy + report)

Distribution by Scientific Domains
Medical Sciences57%

Selected Abstracts

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

CHILD: CARE, HEALTH AND DEVELOPMENT, Issue 5 2007
Richard 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]

Health-related quality of life of youth with inflammatory bowel disease: A comparison with published data using the PedsQL 4.0 generic core scales

INFLAMMATORY BOWEL DISEASES, Issue 6 2010
Jennifer Hauser Kunz PhD
Abstract Background: This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. Methods: One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t -tests. Reporter agreement was examined using paired samples t -tests and intraclass correlations (ICCs). Results: Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Conclusions: Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL. Inflamm Bowel Dis 2010 [source]

The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease,

PEDIATRIC BLOOD & CANCER, Issue 4 2010
Julie A. Panepinto MD, MSPH
Abstract Background The objectives of this study were to evaluate factors that influence agreement between parent-proxy and child self-report of health-related quality of life (HRQL) in sickle cell disease. We hypothesized that the mental health of the parent, parental HRQL and child characteristics would affect agreement. Procedure In a cross-sectional study of children with sickle cell disease, HRQL of the child and the parent's HRQL and mental health were assessed. The effect of parent and child characteristics on agreement between parent-proxy and child self-report of HRQL were determined. Results Rates of agreement between parent-proxy and child self-report of HRQL ranged between 42% and 49%. Parents with increased symptoms of distress had an increased odds of reporting a worse physical (Odds Ratio (OR) 1.12) and psychosocial HRQL (OR 1.10) compared to the child's self-report. Severe sickle cell disease was associated with an increased odds of the parent reporting the child's physical HRQL was worse, (OR 4.68) compared to the child's self-report. Conclusions Greater symptoms of distress in the parent are associated with worse parent-proxy report of the child's HRQL. Severe sickle cell disease is associated with greater disagreement between parent-proxy and child self-report of HRQL. These findings broaden our understanding of factors that influence proxy-reporting of a child's HRQL. Pediatr Blood Cancer. 2010;55:714,721. © 2010 Wiley-Liss, Inc. [source]

Adherence and health-related quality of life in adolescent liver transplant recipients

PEDIATRIC TRANSPLANTATION, Issue 3 2008
Emily M. Fredericks
Abstract:, Adolescence is a particularly high-risk period for non-adherence with post-transplant medical regimens. There remains a lack of research investigating factors related to non-adherence in adolescent LT recipients. The present study empirically assessed the relationship between adherence and HRQOL in adolescent LT recipients. Participants included 25 adolescents (mean = 15.1 yr, range 12,17.9) and their parent/guardian(s). Adherence was assessed using multiple indices including clinician-conducted interviews, rate of clinic attendance, and s.d. of consecutive tacrolimus blood levels. HRQOL was examined using self-report and parent-proxy report on well-validated assessment measures. Results indicated that 76% of participants were non-adherent on at least one measure of adherence, and HRQOL was significantly lower than normative data for healthy children. Tacrolimus s.d. were significant related to poor HRQOL across domains of physical, school, and social functioning. Non-adherent adolescents reported poorer health perceptions, self-esteem, mental health, family cohesion, and more limitations in social and school activities related to physical, emotional, and behavioral problems. These results suggest that empirically based assessment of HRQOL may help identify those at highest risk for behavior, emotional and school difficulties, as well as non-adherence. The examination of tacrolimus s.d. may also help identify patients who may benefit from intervention to promote adherence and HRQOL. Prospective investigations are necessary to further identify the impact of HRQOL on adherence and long-term health outcomes to further guide clinical intervention. [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 Scales

CHILD: CARE, HEALTH AND DEVELOPMENT, Issue 5 2007
Richard 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]

Health-related quality of life of youth with inflammatory bowel disease: A comparison with published data using the PedsQL 4.0 generic core scales

INFLAMMATORY BOWEL DISEASES, Issue 6 2010
Jennifer Hauser Kunz PhD
Abstract Background: This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. Methods: One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t -tests. Reporter agreement was examined using paired samples t -tests and intraclass correlations (ICCs). Results: Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Conclusions: Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL. Inflamm Bowel Dis 2010 [source]