Veronica Schiariti

Performance measurement and improvement frameworks in health, education and social services systems: a systematic review

PURPOSE To perform a systematic review, supplemented by a targeted grey literature scan, for performance measurement and improvement frameworks within and across the health, education and social service systems. The intended outcome was the creation of a foundation of evidence to inform the development of cross-sectoral quality improvement frameworks. DATA SOURCES MEDLINE, CINAHL, PsycINFO, ERIC, EMBASE, Social Services Abstracts, Social Work Abstracts and Education Index Full Text were searched up to April/May 2007. In addition, 26 governmental and 27 organizational websites were searched. STUDY SELECTION English language material with a publication date of 1986 or more recent that described a health, education or social services multidimensional framework for performance measurement and improvement. Data extraction The framework name; administrative sector; level of application; setting; population of interest; categories of quality described within the framework; country of application; and citations to other performance measurement and improvement frameworks were extracted from each article. RESULTS In total, 111 frameworks were identified. Most frameworks (n = 97) were developed in or for the health sector. A concept sorting exercise identified 16 quality concepts applicable across many settings, sectors and levels of application. CONCLUSION This systematic review of quality domains will be relevant and useful to those who are developing and using performance measurement and improvement frameworks for adult and child populations within or across the health, social service or education sectors.

International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting.

The objective of this article is to report on the Core Sets developed for children and youth aged 0 to 18 years, with cerebral palsy (CP) based on the pediatric International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO).

Toward the Development of the International Classification of Functioning Core Sets for Children With Cerebral Palsy A Global Expert Survey

The goal of the International Classification of Functioning is to standardize the classification of health and function of children around the world. To facilitate the application of this classification, International Classification of Functioning–based tools like the “Core Sets” are being developed. We conducted an international survey of professional experts to identify the most relevant areas of functioning in children with cerebral palsy. The questionnaire covered each component of the classification. In total, 193 professionals completed the survey (response rate 78%). Overall, 9706 answers were linked to the classification (pediatric version) by 2 professionals. From the experts’ perspective, movement-related areas and social participation are the most relevant areas of functioning. Experts suggest a more comprehensive profile of functioning in particular in areas of personal capacity and social participation. The results of this survey will inform the development of the International Classification of Functioning Core Sets for children with cerebral palsy.

'He does not see himself as being different': the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy.

In the context of the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for children and adolescents with cerebral palsy (CP), we investigated the strengths and limitations in functioning important to children with CP, through either child self‐reports or caregiver proxy reports, using components of the International Classification of Functioning, Disability and Health for Children and Youth (ICF‐CY).

Severe retinopathy of prematurity and visual outcomes in British Columbia: a 10-year analysis

Objective:To describe the incidence trend and long-term visual outcomes of infants diagnosed with stages 3 to 4 retinopathy of prematurity (ROP) or laser-treated ROP born in British Columbia (Canada).Study Design:Data from all (n=1384) neonates with birth weight (BW) <1250 g, admitted to British Columbia Childrens Hospital between period 1 (January 1992 to December 1996) and period 2 (January 1997 to December 2001) were analyzed. Ophthalmologic records of infants with stages 3 to 4 ROP or laser-treated ROP were abstracted. χ2- and t-test were used to compare neonatal characteristics between periods. Logistic regression was used to identify risk factors associated with visual impairment (defined as visual acuity ⩽20/60 or visual field restriction of 20° binocularly).Result:Of 1159 surviving infants, 887 were examined for acute ROP (473 in period 1, 414 in period 2). Stages 3 to 4 ROP or laser-treated ROP were present in 35 infants in period 1 (7%) and 59 in period 2 (14%), P⩽0001. Infants born in period 2 had lower mean BW and gestational age. Among infants who developed severe ROP or laser-treated ROP, binocular visual impairment was present in eight children in period 1 and seven in period 2. Refractive errors, including myopia and astigmatism, were increased in period 2. Children who developed periventricular leucomalacia had the highest risk of visual impairment at 4 to 6 years of age.Conclusion:During the 10-year study period, a significant increase in rates of stages 3 to 4 or laser-treated ROP was not associated with increases in visual impairment rates.

Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning

Purpose. Content comparison of health-related quality of life ((HRQOL)) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version ((ICF-CY)) as a standard by which to compare the content of all cerebral palsy ((CP)) disease-specific HRQOL measures. Methods. MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa ((κ)) statistic. Results. Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent ((n  ==  510)) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 ((95%% CI: 0.75–0.77)). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components. Conclusions. The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.

Caregiver-reported health outcomes of preschool children born at 28 to 32 weeks' gestation.

Objective: We conducted a population-based survey of caregivers of all preschoolers at 42 months of age who had been admitted at birth in 1996–1997 to a tertiary neonatal intensive care unit in British Columbia (BC), Canada. Methods: In this paper, we examine health status (measured by Health Status Classification System [HSCS-PS]), health-related quality of life (HRQL) (measured by Infant and Toddler Quality of Life Questionnaire), and behavioral outcomes (measured by Child Behavior Checklist) of the preschoolers in the sample who were born at 28–32 weeks gestational age (GA) in comparison to those born at <28 weeks GA. In addition, we compare these outcomes to health status, HRQL, and behavioral outcomes of a cohort of healthy full-term infants identified from the primary care practices at two of the hospital sites in BC in 1996–1997. Results: From the total identified sample of 555 children, the survey was completed for 50 children born at <28 weeks GA, 201 children born at 28–32 weeks GA, and 393 healthy full-term subjects. The developmental outcomes of the preschoolers born at 28–32 weeks GA was very similar to those born at <28 weeks GA. We also found increased parental report of problems related to health status and HRQL among the 28–32 weeks GA group. When compared with the term cohort, the 28–32 weeks GA group had poorer outcomes in all HRQL domains. Conclusion: This study discusses the importance of continued neurodevelopmental follow-up care of infants born at 28–32 weeks GA in addition to those infants born <28 weeks GA.

Relevant Areas of Functioning in Children With Cerebral Palsy Based on the International Classification of Functioning, Disability and Health Coding System A Clinical Perspective

In the context of the development of the International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy, an evidence-based methodology was implemented to select the most relevant categories out of the entire classification. The aim of this study was to describe the contribution of the clinical perspective to select categories of functioning in children and youth with cerebral palsy. We conducted a chart review of clinical assessments of children and youth with cerebral palsy aged 0 to 18 years in a tertiary level center. In total, 129 International Classification of Functioning categories were covered in clinical encounters: representing 19% body structures, 33% body functions, 37% activity and participation, and 11% environmental factors. Our findings can guide clinical assessments and goal-setting of this population. This important perspective will inform the development of the International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy.

Comparing participation in activities among children with disabilities.

INTRODUCTION Compared to typically developing peers, children with disabilities due to neurodevelopmental disorders and disabilities (NDD/D) and to chronic medical conditions (CMC) have reduced participation in activities. The extent to which these two groups of children have different levels of participation is unknown and was examined in this study. METHODS The 2006 Participation and Activity Limitation Survey children dataset collected by Statistics Canada was analyzed. Children with disabilities due to NDD/D and CMC were identified following review and classification of all ICD-10 codes in the dataset by two pediatricians. Dependent variables were parent-reported child participation in supervised and unsupervised physical activities within and outside of school, educational activities, and social/recreational activities. Logistic regression analyses, with relevant covariates (child and familial characteristics), were used to analyze the data. RESULTS Children with NDD/D were significantly more likely to take part in supervised and unsupervised physical activity at school than children with CMC (p<0.001). A similar trend was observed for participation in school outings, although the effect was not significant at p<0.01. Finally, a trend in the opposite direction was observed for educational activities, as children with NDD/D were less likely to take part in these activities than children with CMC. DISCUSSION Finding decreased participation among children with CMC compared with NDD/D was not predicted a priori but has potential implications for their mental and physical health. CONCLUSIONS Gaining a better understanding of the barriers to participation in physical activity may contribute to improving the overall health status of children with CMC.

Period prevalence of epilepsy in children in BC: a population-based study.

BACKGROUND Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the prevalence of epileptic seizures and of epilepsy in children in British Columbia (BC). METHODS All BC residents between 0-19 years-of-age in 2002-3 enrolled in the Medical Services Plan were included. Epileptic seizures were defined using ICD-9 codes; health care utilization data was obtained from BC Linked Health Database. The period prevalence of epileptic seizures and of epilepsy was determined by age, urban/rural region and socioeconomic status. RESULTS 8,125 of 1,013,816 children were identified as having an epileptic seizure of which 5621 were classified as epilepsy--5.5 per 1000 children (95% CI: 5.4-5.7). The prevalence of epilepsy in infants and preschoolers was higher than that reported in the literature. A higher prevalence of epilepsy was observed also among those with low socioeconomic status. A higher prevalence of epilepsy was observed in those health regions with a higher proportion of First Nations and a lower prevalence was observed in health regions with a higher proportion of visible minorities. CONCLUSIONS Age-specific prevalence rates in BC children for epilepsy, determined from population-based administrative records, were similar to published data except in children under five years. We found a gradient of increased prevalence with decreased level of income. Prevalence rates based on utilization data have the potential to guide program planning for children with epileptic seizures.