Pediatric Quality of Life
This curated set of instruments measure pediatric quality of life in generic as well as condition-specific contexts (e.g., pain, asthma). Each is described by condition/disease context, child age range, languages, and evidence of psychometric testing (e.g., validity and reliability). They can be compared by checking the “compare” button.
Showing 37–45 of 82 results
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HuPS (Health Utilities Preschool)
Generic Measure domains: Vision, Hearing, Speech, Ambulation, Dexterity, Emotion, Cognition, Pain & Discomfort Summary of development: This is a new measure based on the Health Utilities Index Mark 3 and the Comprehensive Health Status Classification System for Preschool Children. It is designed to measure HRQoL in young children ages 2-4. HUPS is to be used by parents as a proxy. The HuPS is new and has not been validated in other articles, except for one article that translates the HuPS into Portuguese (Viani 2023), and one article that validates the measure for French Canadian translation (Poder 2021). It is important to note that health utility scales that are made in the econometric tradition, such as the HuPS, do not necessarily need psychometric testing such as internal consistency or structural validity. For these measures, other types of validity such as known groups validity and convergent validity may be useful.
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Infant health-related Quality of life Instrument (IQI)
Generic Measure domains: Sleeping; feeding; breathing; stooling/poo; mood; skin; interaction Summary of development: The IQI was developed as a generic preference-based measure for infants 0-1 years old. Based on literature searches, expert reviews, and family interviews, the following eight health attributes were chosen as most relevant for infants: sleeping, feeding, breathing, stooling, mood, skin, spitting, and general discomfort. Spitting was removed as a domain in the instrument’s final seven items, and general discomfort was thought to be too vague, so “interaction” was used since it was more appropriate for infants (Jabrayilov, 2018). This measure is based on valuation of health states using Discrete Choice Experiments. The IQI is administered on a mobile app with four levels of responses to each domain used to generate a single HRQOL score. Because of its recent development, there are very few articles about the IQI. Krabbe (2020) describes developing an algorithm to rate health states using DCE (Discrete Choice Experiments) and says next steps for this measure are using it in clinical settings and general population and comparing it with validated measures. It is important to note that health utility scales that are made in the econometric tradition, such as the IQI, do not necessarily need psychometric testing such as internal consistency or structural validity. For these measures, other types of validity such as known groups validity and convergent validity may be useful.
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Infant Toddler Quality of Life (ITQOL)-Long version
Generic Measure domains: Physical; growth and development; bodily pain; temperament/moods; general behaviour; getting along; general health perceptions; change in health; parental impact—emotion; time; mental; family cohesion; general health Summary of development: The ITQOL is a multidimensional measure that was developed for a broad age continuum so that scores could be tracked over time. The instrument is a parent-reported measure, and it complements the Child Health Questionnaire, an instrument for ages 5 and older with more than 72 translations. It adopts the seminal World Health Organization’s definition of health (i.e., a state of complete physical, mental, and social well-being and not just the absence of disease) and developmental guidelines used by pediatricians as its conceptual framework. By utilizing items specific to infant development and a conceptual framework similar to but not identical to the CHQ, the ITQOL allows for the continuous measurement of health-related quality of life outcomes across the infant/child continuum. (Landgraf 2013). Items of the long version of ITQOL (97-103 items) were reduced to 47 items for the short version of ITQOL. The short version was developed using data in Dutch. Here, we only include testing information from English versions of the questionnaire. Two versions: Long (97 items) and Short (47 items)
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Infant Toddler Quality of Life (ITQOL)-SF47–Short version
Generic Measure domains: Physical; growth and development; bodily pain; temperament/moods; general behaviour; getting along; general health perceptions; change in health; parental impact—emotion; time; mental; family cohesion; general health Summary of development: The ITQOL is a multidimensional measure that was developed for a broad age continuum so that scores could be tracked over time. The instrument is a parent-reported measure, and it complements the Child Health Questionnaire, an instrument for ages 5 and older with more than 72 translations. It adopts the seminal World Health Organization’s definition of health (i.e., a state of complete physical, mental, and social well-being and not just the absence of disease) and developmental guidelines used by pediatricians as its conceptual framework. By utilizing items specific to infant development and a conceptual framework similar to but not identical to the CHQ, the ITQOL allows for the continuous measurement of health-related quality of life outcomes across the infant/child continuum. (Landgraf 2013). Items of the long version of ITQOL (97-103 items) were reduced to 47 items for the short version of ITQOL. The short version was developed using data in Dutch. Here, we only include testing information from English versions of the questionnaire. Two versions: Long (97 items) and Short (47 items)
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Infant’s Quality of Life (QUALIN)
Generic measure Measure domains: Psychomotor development; family environment; psychopathological; sociability Summary of development: TBD
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Inventory for Assessing Life Quality of Children and Adolescents- ILC (English)
Measure name: Inventory for Assessing Life Quality of Children and Adolescents- ILC (English) Inventar zur Untersuchung der Lebensqualität von Kindern und Jugendlichen- ILK (German) Generic Measure domains: Global QoL; school performance; family functioning; social integration; interests and hobbies; physical health; mental health Summary of development: Developed in Germany for use in child psychiatric settings as part of the Marburg System of Quality Assurance and Therapy Evaluation (MARSYS). MARSYS was a long-term project that employed a modular system of designing instruments for psychiatrically hospitalized adolescents and children. ILC has primarily been used in Germany, Austria, and Norway with validation work in non-English versions. We found no psychometric testing of an English version.
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Kids-CAT
Generic Measure domains: Physical wellbeing; psychological wellbeing; parent relations; social support and peers; school wellbeing; chronic-generic Summary of development: The KIDSCREEN project was a joint project by 13 countries in Europe (Austria, Czech Republic, France, Germany, Greece, Hungary, Ireland, Poland, Spain, Sweden, Switzerland, the Netherlands, and the United Kingdom) in the early 2000’s. The goal of the project was to create a generic HRQOL item for children and adolescents. Focus groups were used to determine children’s and their parents’ opinions about HRQOL and what they considered as the most important aspects. The most common health attributes mentioned in the interviews were rated by experts in childhood HRQOL, then children and parents ranked these attributes in order of importance. The dimensions identified were: Physical well-being; Psychological well-being; Moods and emotions; Self-perception; Autonomy; Parental relations and home life; Social support and peers; School environment; Social acceptance; and Financial Resources (Ravens-Sieberer 2001). A pilot version of a questionnaire was given to children and parents who then reported on ease of use, readability of questions, and scales for responses (Detmar 2006). The first version of the KIDSCREEN had 52 questions, and subsequent versions were reduced to 27 and 10 questions. Item reduction was done using exploratory factor analysis, Mokken scale analysis, Rasch partial credit modeling, DIF (Differential Item Functioning) (using Zumbo’s logistic regression method), MAP analyses, and confirmatory factor analysis (Robitail 2007). The Kids-CAT (Computer Adaptive Test) is a version developed in collaboration with the US (United States) PROMIS (Patient Reported Outcomes Measurement Information System) Pediatric Project. (Ravens-Sieberer 2014). Here we report testing in any study that included English language partipants. Much of the KIDSCREEN psychometric testing has been done in other languages, particularly German and Spanish. There is close cooperation with the DISABKIDS project, which is also funded by the European Union. In close cooperation with the sister project KIDSCREEN, the DISABKIDS project developed disease-specific questionnaires to record the health-related quality of life of children and adolescents aged 4 to 7 and 8 to 16 years with a chronic disease and/or disability such as bronchial asthma, infantile cerebral palsy, diabetes mellitus, epilepsy, juvenile arthritis, cystic fibrosis, neurodermatitis and obesity. Four versions: KIDSCREEN-52, KIDSCREEN-27, KIDSCREEN-10, Kids-CAT (not available to public)
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KIDSCREEN-10
Generic Measure domains: Physical activity; depressive moods and emotions; social and leisure time; relationship with parents; relationship with peers; cognitive and school performance Summary of development: The KIDSCREEN project was a joint project by 13 countries in Europe (Austria, Czech Republic, France, Germany, Greece, Hungary, Ireland, Poland, Spain, Sweden, Switzerland, the Netherlands, and the United Kingdom) in the early 2000’s. The goal of the project was to create a generic HRQOL item for children and adolescents. Focus groups were used to determine children’s and their parents’ opinions about HRQOL and what they considered as the most important aspects. The most common health attributes mentioned in the interviews were rated by experts in childhood HRQOL, then children and parents ranked these attributes in order of importance. The dimensions identified were: Physical well-being; Psychological well-being; Moods and emotions; Self-perception; Autonomy; Parental relations and home life; Social support and peers; School environment; Social acceptance; and Financial Resources (Ravens-Sieberer 2001). A pilot version of a questionnaire was given to children and parents who then reported on ease of use, readability of questions, and scales for responses (Detmar 2006). The first version of the KIDSCREEN had 52 questions, and subsequent versions were reduced to 27 and 10 questions. Item reduction was done using exploratory factor analysis, Mokken scale analysis, Rasch partial credit modeling, DIF (Differential Item Functioning) (using Zumbo’s logistic regression method), MAP analyses, and confirmatory factor analysis (Robitail 2007). The Kids-CAT (Computer Adaptive Test) is a version developed in collaboration with the US (United States) PROMIS (Patient Reported Outcomes Measurement Information System) Pediatric Project. (Ravens-Sieberer 2014). Here we report testing in any study that included English language partipants. Much of the KIDSCREEN psychometric testing has been done in other languages, particularly German and Spanish. There is close cooperation with the DISABKIDS project, which is also funded by the European Union. In close cooperation with the sister project KIDSCREEN, the DISABKIDS project developed disease-specific questionnaires to record the health-related quality of life of children and adolescents aged 4 to 7 and 8 to 16 years with a chronic disease and/or disability such as bronchial asthma, infantile cerebral palsy, diabetes mellitus, epilepsy, juvenile arthritis, cystic fibrosis, neurodermatitis and obesity. Four versions: KIDSCREEN-52, KIDSCREEN-27, KIDSCREEN-10, Kids-CAT (not available to public)
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KIDSCREEN-27
Generic Measure domains: Physical wellbeing; psychological wellbeing; parent relations and autonomy; social support and peers; school environment Summary of development: The KIDSCREEN project was a joint project by 13 countries in Europe (Austria, Czech Republic, France, Germany, Greece, Hungary, Ireland, Poland, Spain, Sweden, Switzerland, the Netherlands, and the United Kingdom) in the early 2000’s. The goal of the project was to create a generic HRQOL item for children and adolescents. Focus groups were used to determine children’s and their parents’ opinions about HRQOL and what they considered as the most important aspects. The most common health attributes mentioned in the interviews were rated by experts in childhood HRQOL, then children and parents ranked these attributes in order of importance. The dimensions identified were: Physical well-being; Psychological well-being; Moods and emotions; Self-perception; Autonomy; Parental relations and home life; Social support and peers; School environment; Social acceptance; and Financial Resources (Ravens-Sieberer 2001). A pilot version of a questionnaire was given to children and parents who then reported on ease of use, readability of questions, and scales for responses (Detmar 2006). The first version of the KIDSCREEN had 52 questions, and subsequent versions were reduced to 27 and 10 questions. Item reduction was done using exploratory factor analysis, Mokken scale analysis, Rasch partial credit modeling, DIF (Differential Item Functioning) (using Zumbo’s logistic regression method), MAP analyses, and confirmatory factor analysis (Robitail 2007). The Kids-CAT (Computer Adaptive Test) is a version developed in collaboration with the US (United States) PROMIS (Patient Reported Outcomes Measurement Information System) Pediatric Project. (Ravens-Sieberer 2014). Here we report testing in any study that included English language partipants. Much of the KIDSCREEN psychometric testing has been done in other languages, particularly German and Spanish. There is close cooperation with the DISABKIDS project, which is also funded by the European Union. In close cooperation with the sister project KIDSCREEN, the DISABKIDS project developed disease-specific questionnaires to record the health-related quality of life of children and adolescents aged 4 to 7 and 8 to 16 years with a chronic disease and/or disability such as bronchial asthma, infantile cerebral palsy, diabetes mellitus, epilepsy, juvenile arthritis, cystic fibrosis, neurodermatitis and obesity. Four versions: KIDSCREEN-52, KIDSCREEN-27, KIDSCREEN-10, Kids-CAT (not available to public)