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 88 results
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Asthma Sleep Disturbance Questionnaire (ASDQ)
Asthma-specific Measure domains: Disability, Nocturnal Symptoms, Daytime Symptoms, Chest Pain Summary of development: Four experienced clinicians were consulted about common symptoms experienced by pediatric asthma patients. From the feedback from the experts, 34 statements were developed, duplicate themes were removed, and 26 were left. Parents of children with asthma were recruited at medical providers’ offices to complete the questionnaire and provide feedback. After considering parents’ feedback, the number of items in the measure were reduced to 17. Further testing on the ASDQ was done with children’s parents recruited at pediatricians’ offices. 164 completed surveys were returned to the clinic. One statement “Taking his/her inhaler has interrupted my child’s life” was removed because 70% of parents answered “Not at all” to this statement. The data was analyzed, and four domains were identified: Disability, Nocturnal Symptoms, Daytime Symptoms and one question about Chest Pain.
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Asthma Therapy Assessment Questionnaire (ATAQ)
Asthma-specific Measure domains: Control; Attitude/behavior, Self-efficacy, Patient-provider communication Summary of development: Researchers used focus groups and experts to come up with the items for the measure. Parents of children with asthma were identified by a managed care organization through pharmacy claims and hospitalizations for asthma. The identified parents were mailed surveys and completed a follow-up telephone survey. Originally 20 items, it was reduced to 14, and there is a short version with 7 items.
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Brief Multidimensional Students’ Life Satisfaction Scale (BMSLSS)
Generic measure Measure domains: Family, Friends, School, Living Environment, Self Summary of development: TBD
*Multiple versions: Multidimensional Life Satisfaction Scale for children (MSLSS), Brief multidimensional students’ life satisfaction scale (BMSLSS), Multidimensional Students’ Life Satisfaction Scale—adolescent version (MSLSS-A) -
Child Health Utility 9D (CHU9D)
Generic measure Measure domains: Emotional function (worried, sad, annoyed), Physical function (tired, pain, sleep, daily routine), Schoolwork/homework/learning function, Social function (able to join in) Summary of development: The CHU9D was developed as a preference-based measure for HRQoL in children and adolescents. An unpublished paper written by Stevens in 2008 describes the conceptual framework and the process of developing the measurement instrument. Stevens (2009) reviewed previous pediatric HRQoL measures and then conducted several rounds of qualitative interviews with 7–11-year-old children to develop areas of concern, ranking of concerns, and test descriptive wording. This work found 11 dimensions of HRQoL and early questionnaires had 19 questions. Further work reduced the number of domains to 9 and the number of questions to 9. There are several tests of different scoring options. The measure website recommends using Stevens 2012 scoring using the standard gamble with adults in the UK. The website notes there is also a scoring algorithm developed using best/worst scaling with Australian adolescents (Ratcliffe 2011). It is important to note that health utility scales that are made in the econometric tradition, such as the CHU9D, 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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Child’s Health Self-concept Scale (CHSCS)
Generic measure Measure domains: Psychosocial; physical health; healthiness; values; energy (in 1984 article) And revised set of domains: Satisfaction with home life/family relations; emotional health; general physical health; peer relationships/friendships; sleeping patterns Summary of development: Hester (1984) surveyed children aged 6-13 using open ended questions to develop 12 categories of health. 58 items were initially created. After expert and child review as well as pilot testing using factor analyses, there were 45 items in 5 domains.
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Children’s Health Ratings Scale (CHRS)
Generic measure Measure domains: Current health quality, resistance to illness, health outlook, current illness state, current comparative health Summary of development: Maylath (1990) modified the RAND General Health Ratings Index to create the CHRS. The original 22 items were reduced to 17 items. There was mention of a parent form, which was not found except for a mention in a scoping review. There were several mentions of the measure in reviews, but we found very few articles describing or using this measure.
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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