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 10–18 of 82 results
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Comprehensive Quality of Life Scale – School Version (ComQol-S5)
Generic measure Measure domains: Material well-being; Health; Productivity; Intimacy; Safety; Place in community; Emotional well-being (Optional: Spiritual) Summary of development: Based on previous versions of ComQol for adults and those with intellectual disabilities, Cummins (1997) developed a scale for school children aged 11-18. The scale development occurred in Australia. The scale has several editions with modifications in wording. The 5th edition has a manual. The full form also has several unscored and free text questions.
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Dartmouth Primary Care Cooperative Information Project (COOP) – Adolescent Version
Generic measure Measure domains: Physical fitness, emotional feelings, school work, social support, family communication, health habits Summary of development: The Dartmouth Primary Care Cooperative Information Project (COOP Project) was established in the 1980’s. It was a collaboration of public healthcare policy makers, physicians, and medical school faculty from Maine, New Hampshire, and Vermont, along with faculty at Dartmouth Medical School. The goal was to find ways to measure HRQoL in physicians’ offices (Nelson et al 1981a; Nelson et al 1981b). The measure was originally used in adult and geriatric populations. In 1994, Wasson created a version of the COOP measure for adolescents based on previous versions for adults. Here we only include testing of the adolescent version but there is other testing of the adult version in the literature.
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DISABKIDS Chronic Generic HRQOL (DCGM)
Generic measure Measure domains: Emotion, Independence, Physical, Social Inclusion, Social Exclusion, Medication Summary of development: The DISABKIDS project was based on previous groups to develop international measures for adults. The DISABKIDS project was a collaborative venture between seven European countries [Austria, France, Germany, Greece, the Netherlands, Sweden and the United Kingdom], and the goal was to develop an internationally valid instrument for children with chronic illnesses, as opposed to instruments which are developed in one country and then translated to other languages (Baars 2005). There were two parts of this project: first, developing the Chronic Generic HRQOL measure, which can be used for children with any chronic medical condition, then developing the disease-specific versions to be used in addition to the generic measure. The following condition-specific versions are available as an add-on to the generic measure: asthma [11 items], juvenile chronic arthritis [12 items], atopic dermatitis [12 items], diabetes mellitus [10 items], cerebral palsy [12 items], cystic fibrosis [10 items], and epilepsy [10 items] (Baars 2005). The original Chronic Generic questionnaire had 56 items (Petersen 2005) but was narrowed down to 37 by using factor analysis (Debensason 2004). There is also a 10-item short form with an optional additional 2 medication-related questions for a total of 12 (Muehlan 2010). Finally, there is a six-item version for younger children ages 4-7 in which they can self-report their answers using smiley faces (Chaplin 2008). Two versions of each measurement instrument is available: a child/adolescent self-report and a parent-proxy report. We include any article that has some results using the English versions; there are many articles with testing in other languages that are not included here. Four versions: DISABKIDS Chronic Generic HRQOL, DISABKIDS DCGM-37, DISABKIDS DCGM-10, DISABKIDS SMILEY VERSION
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DISABKIDS DCGM-37
Generic measure Measure domains: Emotion, Independence, Physical, Social Inclusion, Social Exclusion, Medication Summary of development: The DISABKIDS project was based on previous groups to develop international measures for adults. The DISABKIDS project was a collaborative venture between seven European countries [Austria, France, Germany, Greece, the Netherlands, Sweden and the United Kingdom], and the goal was to develop an internationally valid instrument for children with chronic illnesses, as opposed to instruments which are developed in one country and then translated to other languages (Baars 2005). There were two parts of this project: first, developing the Chronic Generic HRQOL measure, which can be used for children with any chronic medical condition, then developing the disease-specific versions to be used in addition to the generic measure. The following condition-specific versions are available as an add-on to the generic measure: asthma [11 items], juvenile chronic arthritis [12 items], atopic dermatitis [12 items], diabetes mellitus [10 items], cerebral palsy [12 items], cystic fibrosis [10 items], and epilepsy [10 items] (Baars 2005). The original Chronic Generic questionnaire had 56 items (Petersen 2005) but was narrowed down to 37 by using factor analysis (Debensason 2004). There is also a 10-item short form with an optional additional 2 medication-related questions for a total of 12 (Muehlan 2010). Finally, there is a six-item version for younger children ages 4-7 in which they can self-report their answers using smiley faces (Chaplin 2008). Two versions of each measurement instrument is available: a child/adolescent self-report and a parent-proxy report. We include any article that has some results using the English versions; there are many articles with testing in other languages that are not included here. Four versions: DISABKIDS Chronic Generic HRQOL, DISABKIDS DCGM-37, DISABKIDS DCGM-10, DISABKIDS SMILEY VERSION
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DISABKIDS SMILEY VERSION
Generic measure Measure domains: Emotion, Independence, Physical, Social Inclusion, Social Exclusion, Medication Summary of development: The DISABKIDS project was based on previous groups to develop international measures for adults. The DISABKIDS project was a collaborative venture between seven European countries [Austria, France, Germany, Greece, the Netherlands, Sweden and the United Kingdom], and the goal was to develop an internationally valid instrument for children with chronic illnesses, as opposed to instruments which are developed in one country and then translated to other languages (Baars 2005). There were two parts of this project: first, developing the Chronic Generic HRQOL measure, which can be used for children with any chronic medical condition, then developing the disease-specific versions to be used in addition to the generic measure. The following condition-specific versions are available as an add-on to the generic measure: asthma [11 items], juvenile chronic arthritis [12 items], atopic dermatitis [12 items], diabetes mellitus [10 items], cerebral palsy [12 items], cystic fibrosis [10 items], and epilepsy [10 items] (Baars 2005). The original Chronic Generic questionnaire had 56 items (Petersen 2005) but was narrowed down to 37 by using factor analysis (Debensason 2004). There is also a 10-item short form with an optional additional 2 medication-related questions for a total of 12 (Muehlan 2010). Finally, there is a six-item version for younger children ages 4-7 in which they can self-report their answers using smiley faces (Chaplin 2008). Two versions of each measurement instrument is available: a child/adolescent self-report and a parent-proxy report. We include any article that has some results using the English versions; there are many articles with testing in other languages that are not included here. Four versions: DISABKIDS Chronic Generic HRQOL, DISABKIDS DCGM-37, DISABKIDS DCGM-10, DISABKIDS SMILEY VERSION
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Duke Health Profile-adolescent version (DHP-A)
Generic measure Measure domains: Physical health; mental health; social health; general health; perceived health; self-esteem; anxiety; depression; pain; disability Summary of development: Duke Health Profile was initially created for adult population (Parkerson et al. 1990). The French Committee for Health Promotion adapted the original version, which is the Duke Health Profile- adults version that originated in the United States, for use among adolescents in France (Vo et al. 2005). The DHP-Adolescent version is the same as the adult version except for a change to one question about social well-being from “friends and family” to “family outside of the home and friends outside of school.” The original language for DHP-A is French with several evaluations of the French version that are not included in this review. We could not find a psychometric evaluation of the English version of the DHP-A.
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EQ-5D-Y Proxy Version 1 (Proxy Opinion of Child HRQoL) EQ-5D-Y Proxy Version 2 (Proxy Opinion of Child HRQoL as child would report)
Generic measure Measure domains: 5 Dimensions: mobility, self-care, usual activity, pain/discomfort, and anxiety/depression, plus a Visual Analog Score (VAS) of overall health on a scale of 0-100. Summary of development: The EuroQol Research Foundation is responsible for the development of the adult measure, the EQ-5D. The EQ-5D measure is widely used to measure adult HRQoL, and the EQ-5D-Y was developed from the adult measure. The version for youth was adapted by reviewing literature on previous measures, the assistance of pediatric specialists, and qualitative interviews. The EQ-5D-Y consists of 2 pages: the EQ-5D (EuroQoL 5 dimension) descriptive system and the EQ visual analogue scale (EQ VAS). EQ-5D-Y is designed for self-completion by children and adolescents aged 8-15 years. Proxy versions, for completion by a caregiver or someone who knows the person well, are also available. In Version 1, proxies are asked to evaluate the child’s health state according to their own opinion; in Version 2, proxies are asked to evaluate their child’s health according to what they believe the child’s own opinion would be. The EQ-5D-Y-3L and the EQ-5D-Y-5L have the same dimensions and questions, but the 3L version has 3 levels of responses (no problems; some problems; a lot of problems); the 5L version has 5 levels of responses (no problems, slight problems, moderate problems, severe problems, unable to/extreme problems) designed to be more sensitive to health states. The 5L version was developed to reduce the ceiling effects of the 3L measure (Kreimeier 2019). It is important to note that health utility scales that are made in the econometric tradition, such as the EQ5D, 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. The EQ-5D-Y is available and evaluated in many languages; here we only include studies with English speaking participants. Three versions: EQ-5D-Y-3L (3 levels), EQ-5D-Y-5L (5 levels), EQ-5D-Y Proxy Version 1 (Proxy Opinion of Child HRQoL) and EQ-5D-Y Proxy Version 2 (Proxy Opinion of Child HRQoL as child would report)
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EQ-5D-Y-3L (EuroQoL 5-Dimensional Questionnaire for Youth, 3 levels)
Generic measure Measure domains: 5 Dimensions: mobility, self-care, usual activity, pain/discomfort, and anxiety/depression, plus a Visual Analog Score (VAS) of overall health on a scale of 0-100. Summary of development: The EuroQol Research Foundation is responsible for the development of the adult measure, the EQ-5D. The EQ-5D measure is widely used to measure adult HRQoL, and the EQ-5D-Y was developed from the adult measure. The version for youth was adapted by reviewing literature on previous measures, the assistance of pediatric specialists, and qualitative interviews. The EQ-5D-Y consists of 2 pages: the EQ-5D (EuroQoL 5 dimension) descriptive system and the EQ visual analogue scale (EQ VAS). EQ-5D-Y is designed for self-completion by children and adolescents aged 8-15 years. Proxy versions, for completion by a caregiver or someone who knows the person well, are also available. In Version 1, proxies are asked to evaluate the child’s health state according to their own opinion; in Version 2, proxies are asked to evaluate their child’s health according to what they believe the child’s own opinion would be. The EQ-5D-Y-3L and the EQ-5D-Y-5L have the same dimensions and questions, but the 3L version has 3 levels of responses (no problems; some problems; a lot of problems); the 5L version has 5 levels of responses (no problems, slight problems, moderate problems, severe problems, unable to/extreme problems) designed to be more sensitive to health states. The 5L version was developed to reduce the ceiling effects of the 3L measure (Kreimeier 2019). It is important to note that health utility scales that are made in the econometric tradition, such as the EQ5D, 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. The EQ-5D-Y is available and evaluated in many languages; here we only include studies with English speaking participants. Three versions: EQ-5D-Y-3L (3 levels), EQ-5D-Y-5L (5 levels), EQ-5D-Y Proxy Version 1 (Proxy Opinion of Child HRQoL) and EQ-5D-Y Proxy Version 2 (Proxy Opinion of Child HRQoL as child would report)
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EQ-5D-Y-5L (EuroQoL 5-Dimensional Questionnaire for Youth, 5 levels)
Generic measure Measure domains: 5 Dimensions: mobility, self-care, usual activity, pain/discomfort, and anxiety/depression, plus a Visual Analog Score (VAS) of overall health on a scale of 0-100. Summary of development: The EuroQol Research Foundation is responsible for the development of the adult measure, the EQ-5D. The EQ-5D measure is widely used to measure adult HRQoL, and the EQ-5D-Y was developed from the adult measure. The version for youth was adapted by reviewing literature on previous measures, the assistance of pediatric specialists, and qualitative interviews. The EQ-5D-Y consists of 2 pages: the EQ-5D (EuroQoL 5 dimension) descriptive system and the EQ visual analogue scale (EQ VAS). EQ-5D-Y is designed for self-completion by children and adolescents aged 8-15 years. Proxy versions, for completion by a caregiver or someone who knows the person well, are also available. In Version 1, proxies are asked to evaluate the child’s health state according to their own opinion; in Version 2, proxies are asked to evaluate their child’s health according to what they believe the child’s own opinion would be. The EQ-5D-Y-3L and the EQ-5D-Y-5L have the same dimensions and questions, but the 3L version has 3 levels of responses (no problems; some problems; a lot of problems); the 5L version has 5 levels of responses (no problems, slight problems, moderate problems, severe problems, unable to/extreme problems) designed to be more sensitive to health states. The 5L version was developed to reduce the ceiling effects of the 3L measure (Kreimeier 2019). It is important to note that health utility scales that are made in the econometric tradition, such as the EQ5D, 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. The EQ-5D-Y is available and evaluated in many languages; here we only include studies with English speaking participants. Three versions: EQ-5D-Y-3L (3 levels), EQ-5D-Y-5L (5 levels), EQ-5D-Y Proxy Version 1 (Proxy Opinion of Child HRQoL) and EQ-5D-Y Proxy Version 2 (Proxy Opinion of Child HRQoL as child would report)