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 88 results
-
Healthy Pathways PRS (Parent Report Scales)
Generic measure Measure domains: Parent Report- comfort (physical comfort, emotional comfort), energy (physical activity, balanced nutrition, vitality), resilience (family connectedness, neighborhood cohesion), risk avoidance (aggression/bullying/physically hurting), well-being (life satisfaction, self-worth, body image) and achievement (academic performance) Summary of development: The Healthy Pathways scales were derived from the Child Health and Illness Profile (CHIP-CE, CHIP-AE, CHIP-CE/PRF) to make it more psychometrically sound, reliable and valid, and more age appropriate for ages 10-12, when kids are transitioning from childhood to adolescence. Two versions: Healthy Pathways CRS (Child report scales) and Healthy Pathways PRS (parent report scales)
-
How Are You (HAY)
Generic and Asthma-specific components Measure domains: Generic domains: physical activities, cognitive tasks, social activities, general physical complaints, and positive emotions; Asthma-specific domains: asthma symptoms, emotions related to asthma, self-concept, self-management; Other disease-specific versions include those for epilepsy, juvenile rheumatoid diseases, and diabetes mell Summary of development: The HAY- How Are You? by Bruil (1999) is designed for 8–12-year-olds and contains both a generic and a condition-specific component. The items originate from interviews with children and their parents and from experts. There are child and parent versions of this measure. To rate their feelings, children are provided visual analogs of faces with happy or sad expressions from which to choose. The parent questionnaire (HAY-P) asks the parents to rate their perception of the frequency and quality of daily activities performed by their child and to rate their own feelings related to the problems that occur for their child. This measure was originally developed and tested in Dutch. We did not find any psychometric testing of the English version.
-
HUI2- Health Utilities Index
Generic Measure domains: Sensation; ambulation/mobility; emotion; cognition; self-care; pain; fertility Summary of development: The HUI2 and HUI3 are based on the HUI1, which was used as a health-utility measure for low-birthweight babies in the NICU. Originally developed for children with cancer, the HUI2 is a generic measure utilizing preference-based health states to evaluate quality-adjusted life years (QALYs) of clinical interventions (Torrance 1996). Based on literature searches, previous measures, and interviews with parents, the health domains deemed most desirable were: (1) sensory and communication ability, (2) happiness, (3) self-care, (4) pain or discomfort, (5) learning and school ability, and (6) physical activity ability (Cadman 1986). The seventh attribute of fertility was added based on long-term outcomes for children with cancer. Parents of children with cancer and parents of a general population of children were interviewed using Standard Gamble and VAS health state rating (Torrance 1996). When answering, they were asked to imagine multiple health states from age 10 to age 70 to determine the most desirable conditions. When revising the HUI2 to make the HUI3, the domain of Self-care was replaced by Dexterity which reflects inability to take care of oneself if incapacitated; Sensation was replaced by three domains: Vision, Hearing, and Speech, and the domain of Fertility was eliminated. HUI questionnaires are available in many languages, in self- and proxy- assessment versions, in self- and interviewer-administered formats, and with various recall assessment periods. (Horsman 2003). It is important to note that health utility scales that are made in the econometric tradition, such as the HUI Mark 2 and Mark 3, 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. Four versions: HUI2, HUI2 Informant, HUI3, HUI3 Informant
-
HUI2- Health Utilities Index-Informant version
Generic Measure domains: Sensation; ambulation/mobility; emotion; cognition; self-care; pain; fertility Summary of development: The HUI2 and HUI3 are based on the HUI1, which was used as a health-utility measure for low-birthweight babies in the NICU. Originally developed for children with cancer, the HUI2 is a generic measure utilizing preference-based health states to evaluate quality-adjusted life years (QALYs) of clinical interventions (Torrance 1996). Based on literature searches, previous measures, and interviews with parents, the health domains deemed most desirable were: (1) sensory and communication ability, (2) happiness, (3) self-care, (4) pain or discomfort, (5) learning and school ability, and (6) physical activity ability (Cadman 1986). The seventh attribute of fertility was added based on long-term outcomes for children with cancer. Parents of children with cancer and parents of a general population of children were interviewed using Standard Gamble and VAS health state rating (Torrance 1996). When answering, they were asked to imagine multiple health states from age 10 to age 70 to determine the most desirable conditions. When revising the HUI2 to make the HUI3, the domain of Self-care was replaced by Dexterity which reflects inability to take care of oneself if incapacitated; Sensation was replaced by three domains: Vision, Hearing, and Speech, and the domain of Fertility was eliminated. HUI questionnaires are available in many languages, in self- and proxy- assessment versions, in self- and interviewer-administered formats, and with various recall assessment periods. (Horsman 2003). It is important to note that health utility scales that are made in the econometric tradition, such as the HUI Mark 2 and Mark 3, 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. Four versions: HUI2, HUI2 Informant, HUI3, HUI3 Informant
-
HUI3- Health Utilities Index
Generic Measure domains: Vision; hearing; speech; ambulation/mobility; pain; dexterity; emotion; cognition Summary of development: The HUI2 and HUI3 are based on the HUI1, which was used as a health-utility measure for low-birthweight babies in the NICU. Originally developed for children with cancer, the HUI2 is a generic measure utilizing preference-based health states to evaluate quality-adjusted life years (QALYs) of clinical interventions (Torrance 1996). Based on literature searches, previous measures, and interviews with parents, the health domains deemed most desirable were: (1) sensory and communication ability, (2) happiness, (3) self-care, (4) pain or discomfort, (5) learning and school ability, and (6) physical activity ability (Cadman 1986). The seventh attribute of fertility was added based on long-term outcomes for children with cancer. Parents of children with cancer and parents of a general population of children were interviewed using Standard Gamble and VAS health state rating (Torrance 1996). When answering, they were asked to imagine multiple health states from age 10 to age 70 to determine the most desirable conditions. When revising the HUI2 to make the HUI3, the domain of Self-care was replaced by Dexterity which reflects inability to take care of oneself if incapacitated; Sensation was replaced by three domains: Vision, Hearing, and Speech, and the domain of Fertility was eliminated. HUI questionnaires are available in many languages, in self- and proxy- assessment versions, in self- and interviewer-administered formats, and with various recall assessment periods. (Horsman 2003). It is important to note that health utility scales that are made in the econometric tradition, such as the HUI Mark 2 and Mark 3, 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. Four versions: HUI2, HUI2 Informant, HUI3, HUI3 Informant
-
HUI3- Health Utilities Index-Informant
Generic Measure domains: Vision; hearing; speech; ambulation/mobility; pain; dexterity; emotion; cognition Summary of development: The HUI2 and HUI3 are based on the HUI1, which was used as a health-utility measure for low-birthweight babies in the NICU. Originally developed for children with cancer, the HUI2 is a generic measure utilizing preference-based health states to evaluate quality-adjusted life years (QALYs) of clinical interventions (Torrance 1996). Based on literature searches, previous measures, and interviews with parents, the health domains deemed most desirable were: (1) sensory and communication ability, (2) happiness, (3) self-care, (4) pain or discomfort, (5) learning and school ability, and (6) physical activity ability (Cadman 1986). The seventh attribute of fertility was added based on long-term outcomes for children with cancer. Parents of children with cancer and parents of a general population of children were interviewed using Standard Gamble and VAS health state rating (Torrance 1996). When answering, they were asked to imagine multiple health states from age 10 to age 70 to determine the most desirable conditions. When revising the HUI2 to make the HUI3, the domain of Self-care was replaced by Dexterity which reflects inability to take care of oneself if incapacitated; Sensation was replaced by three domains: Vision, Hearing, and Speech, and the domain of Fertility was eliminated. HUI questionnaires are available in many languages, in self- and proxy- assessment versions, in self- and interviewer-administered formats, and with various recall assessment periods. (Horsman 2003). It is important to note that health utility scales that are made in the econometric tradition, such as the HUI Mark 2 and Mark 3, 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. Four versions: HUI2, HUI2 Informant, HUI3, HUI3 Informant
-
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.
-
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.
-
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)