The 360 0 CHILD-profile, a reliable and valid tool to visualize integral child-information (original) (raw)
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PharmacoEconomics
Background and Aims Patient-reported outcome measures (PROMs) for children (aged ≤ 18 years) present methodological challenges. PROMs can be categorised by their diverse underlying conceptual bases, including functional, disability and health (FDH) status; quality of life (QoL); and health-related quality of life (HRQoL). Some PROMs are designed to be accompanied by preference weights. PROMs should account for childhood developmental differences by incorporating age-appropriate health/QoL domains, guidance on respondent type(s) and design. This systematic review aims to identify generic multidimensional childhood PROMs and synthesise their characteristics by conceptual basis, target age, measurement considerations, and the preference-based value sets that accompany them. Methods The study protocol was registered in the Prospective Register of Systematic Reviews (CRD42021230833), and reporting followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted systematic database searches for generic multidimensional childhood PROMs covering the period 2012-2020, which we combined with published PROMs identified by an earlier systematic review that covered the period 1992-2011. A second systematic database search identified preference-based value sets for generic multidimensional PROMs. The PROMs were categorised by conceptual basis (FDH status, QoL and HRQoL) and by target age (namely infants and pre-schoolers aged < 5 years, pre-adolescents aged 5-11, adolescents aged 12-18 and multi-age group coverage). Descriptive statistics assessed how PROM characteristics (domain coverage, respondent type and design) varied by conceptual basis and age categories. Involvement of children in PROM development and testing was assessed to understand content validity. Characteristics of value sets available for the childhood generic multidimensional PROMs were identified and compared. Results We identified 89 PROMs, including 110 versions: 52 FDH, 29 QoL, 12 HRQoL, nine QoL-FDH and eight HRQoL-FDH measures; 20 targeted infants and pre-schoolers, 29 pre-adolescents, 24 adolescents and 37 for multiple age groups. Domain coverage demonstrated development trajectories from observable FDH aspects in infancy through to personal independence and relationships during adolescence. PROMs targeting younger children relied more on informant report, were shorter and had fewer ordinal scale points. One-third of PROMs were developed following qualitative research or surveys with children or parents for concept elicitation. There were 21 preference-based value sets developed by 19 studies of ten generic multidimensional childhood PROMs: seven were based on adolescents' stated preferences, seven were from adults from the perspective of or on behalf of the child, and seven were from adults adopting an adult's perspective. Diverse preference elicitation methods were used to elicit values. Practices with respect to anchoring values on the utility scale also varied considerably. The range and distribution of values reflect these differences, resulting in value sets with notably different properties.
BMJ paediatrics open, 2022
Background Indicators of child health have the potential to inform societal conversations, decision-making and prioritisation. Paediatric core outcome sets are an increasingly common way of identifying a minimum set of outcomes for trials within clinical groups. Exploring commonality across existing sets may give insight into universally important and inclusive child health indicators. Methods A search of the Core Outcome Measures in Effectiveness Trial register from 2008 to 2022 was carried out. Eligible articles were those reporting on core outcome sets focused on children and young people aged 0-18 years old. The International Classification of Functioning, Disability and Health (ICF) was used as a framework to categorise extracted outcomes. Information about the involvement of children, young people and their families in the development of sets was also extracted. Results 206 articles were identified, of which 36 were included. 441 unique outcomes were extracted, mapping to 22 outcome clusters present across multiple sets. Medical diagnostic outcomes were the biggest cluster, followed by pain, communication and social interaction, mobility, self-care and school. Children and young people's views were underrepresented across core outcome sets, with only 36% of reviewed studies including them at any stage of development. Conclusions Existing paediatric core outcome sets show overlap in key outcomes, suggesting the potential for generic child health measurement frameworks. It is unclear whether existing sets best reflect health dimensions important to children and young people, and there is a need for better child and young person involvement in health indicator development to address this. WHAT THIS STUDY HOPES TO ADD ⇒ This study identifies common, universally shared themes across core outcome sets. ⇒ These themes help identify key universal indicators of child health that should be measured across populations. ⇒ The study further identifies gaps and areas for improvement in the involvement of children and their families in identifying key health indicators.
Value in Health, 2015
Objectives: To identify generic, multidimensional patient-reported outcome measures (PROMs) for children up to 18 years old and describe their characteristics and content assessed using the International Classification of Functioning, Disability and Health Children and Youth version (ICF-CY). Methods: The search strategy, developed by an information specialist, included four groups of terms related to "measure," "health," "children and young people," and "psychometric performance." The search was limited to publications from 1992. Five electronic databases and two online-specific PROM databases were searched. Two groups of reviewers independently screened all abstracts for eligible PROMs. Descriptive characteristics of the eligible PROMs were collected, and items and domains of each questionnaire were mapped onto the ICF-CY chapters. Results: We identified 35 PROMs, of which 29 were generic PROMs and 6 were preference-based measures. Many PROMs cover a range of aspects of health; however, social functioning is represented most often. Content covered differs both in which aspects of health are assessed and whether individual questions focus on functioning (what the subject can or does do) and/or wellbeing (how the subject feels about a certain aspect of his or her health). Conclusions: A broad variety of PROMs is available to assess children's health. Nevertheless, only a few PROMs can be used across all age ranges to 18 years. When mapping their content on the ICF-CY, it seems that most PROMs exclude at least one major domain, and all conflate aspects of functioning and well-being in the scales. Keywords: children and young people, health-related quality of life, patient-reported outcome measures, review.
The European Journal of Public Health, 2003
Background: An extended re-assessment of the psychometric properties of the LSPPK, an instrument aimed at identifying children with emotional and behavioural problems. Methods: Data came from a national sample in the Netherlands of parents of 1248 children (aged 5-6 years) interviewed by child health professionals (CHP). Data were obtained regarding psychosocial problems, treatment status and scores on the LSPPK (Parent and CHP Index), and on the Child Behavior Checklist (CBCL). The scale structure, reliability, criterion and content validity and added value of the LSPPK were assessed using the CBCL and treatment status as criteria. Results: The scale structure corresponded with that found originally; the LSPPK improved the prediction of problems according to the CBCL, compared to predictions using readily available risk indicators alone. Reliability varied between 0.55 and 0.69. For the LSPPK Parent Index, sensitivity varied between 0.42 and 0.50. For the CHP Index sensitivity varied between 0.60 and 0.96, but specificity varied between 0.76 and 0.79. Both indices were very sensitive for attention and social problems, but less so for other problems. Conclusion: The LSPPK Parent Index cannot distinguish sufficiently between children with or without serious problems. Either too many children with problems remain unnoticed or too many children without problems are labelled as a case. The LSPPK CHP Index, reflecting the CHP's interpretation of the Parent Index after interviewing the parents does not compensate adequately for the weaknesses of the Parent Index. Better assessment procedures and strategies need to be developed.
JMIR Research Protocols, 2021
Background A new dashboard, the 360ºCHILD-profile, was developed to adopt personalized health care within preventive child health care. On this profile, holistic health data are visualized in a single image to provide parents, adolescents, and caregivers direct access to a manageable résumé of a child’s medical record. Theoretical ordering, conforming to “International Classification of Functioning, Disability and Health for Children and Youth”, guides clinical reasoning toward the biopsychosocial concept of health. It is yet unknown if and how this promising tool functions in practice, and a variety of feasibility questions must be addressed. Objective This paper describes the design and methods of a feasibility randomized controlled trial (RCT), with the aim of evaluating the RCT’s feasibility (recruitment, response, measure completion, and intervention allocation) and 360ºCHILD-profile’s feasibility (usability and potential effectiveness). Methods A pragmatic mixed methods study ...
Health and Quality of Life Outcomes, 2013
Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.
Psychometric Investigation of a Brief Measure of Outcomes in Children’s Mental Health
Community Mental Health Journal, 2014
The current investigation sought to provide reliability and validity evidence for the Child Outcomes Survey (COS), a brief measure designed with a dual purpose to measure functioning and therapeutic relationship and to serve as a clinician-caregiver communication tool. Exploratory (EFA) and confirmatory factor analyses (CFA) were performed using a sample of 774 responses collected from 15 provider sites throughout the state of Pennsylvania. Results of the EFA (n = 387) uncovered a three factor structure (family functioning, child functioning, and therapeutic relationship) which was confirmed in the CFA (n = 387). The internal consistency reliability of the three subscales ranged from a = .76 to a = .91. There was a significant relationship between the therapeutic relationship subscale and the use of the COS as a communication aid (r s = .50, p \ .001). Findings support the COS as an accurate measure of functioning and therapeutic relationship and its utility as a communication aid between clinician and caregiver.
2006
The reliability and validity of the Dominic Interactive (DI) assessment were evaluated. The DI is a computerized, self-report measure for children, which assesses symptom presence for seven DSM-IV diagnoses. The participants were 322 children (169 cocaine exposed, 153 not cocaine exposed) who were recruited at birth for a prospective longitudinal study. At 6 years of age, measures of self-report, parent report, and observational data were collected. Moderate to excellent internal consistencies on the DI were found for the total sample as well as for cocaine status and gender. Concurrent validity correlations between DI scales and the Child Behavior Checklist, Affect in Play Scale, a modified Conners's Teachers Rating Scale, and the Parenting Stress Index were examined. Significant relationships among scales were more apt to be among comparisons that assessed externalizing behaviors. Overall, low correlations were obtained, which are comparable to other studies that evaluate agreement between child and parent report of behaviors.