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 98 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 Survey for Asthma (CHSA) – Child, Teen & Caregiver Versions
Asthma-specific Measure domains: Physical health of the child, Child activity, Family activity, Child emotional health, and Family emotional health Summary of development: In 1992, the American Academy of Pediatrics began an effort to categorize children’s health related quality of life, the AAP Functional Outcomes Project (Williams & Miller 1992). One of the first condition-specific measures developed was for children with asthma by identifying domain areas most appropriate for asthmatic children and their parents. Literature and previous measures, including adult asthma measures, were reviewed, and focus groups were conducted with parents of asthmatic children and pediatricians. Cognitive interviews and pilot tests were done with 95 parents of asthmatic children to assess the pilot measure. The developers focused on designing a measure for parents of children aged 5-12. The CHSA has been replaced by the Asthma Pediatric Quality of Life (PedsQL) (Varni 2004).
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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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Childhood Asthma Control Test (C-ACT)
Asthma-specific Measure domains: Symptom Control and Future Risk Summary of development: The Childhood Asthma Control Test (C-ACT) is modeled after the adult version of the ACT instrument for people 12 years of age and older (Juniper 1999). Childhood allergy and asthma experts came up with questions for the measure based on national guidelines for asthma control. Literature and previous childhood asthma measures were reviewed, and interviews with children and caregivers were conducted (Liu 2007). Parents/caregivers and children rank their symptoms differently, so this measure is designed for both kids and their parents to complete. Because younger children have a harder time with recall periods, children’s questions are asked in the present tense; caregivers answer based on a four-week recall period. This measure uses pictures of faces to represent answers like “All of the time” or “Very bad” to “None of the time” and “Very good” for younger children to more easily comprehend. Originally tested by children with asthma and their caregivers with 21 items – 8 questions for children, and 13 questions for caregivers – the C-ACT questionnaire used item selection to reduce the measure to 7 questions – 4 for children and 3 for caregivers (Liu 2007).
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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.