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 19–27 of 82 results
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Exeter Quality of Life Measure (ExQol, or EHQOL or Exeter health related quality of life)
Generic measure Measure domains: Symptoms (sleep, aches, food allergies, sickness), social well-being, school achievements, physical activity, worry, and family relationships Summary of development: Eiser and colleagues (1999) conducted a study with the goal of developing a generic, self-reported HRQoL instrument for children ages 6-12. Eiser hypothesized that poor QoL is because of differences between a person’s ideal self (“how I would like to be”) versus their actual self (“this is like me”). Eiser et al. note that development of this measure is conceptually based on the Discrepancy Theory, which attempts to explain the individual’s ability to achieve daily goals, to capture the gap between expectations and experience in domains that may be compromised by illness. Originally 16 questions, the final version was narrowed down to 12 questions (Eiser 2000). An interviewer presents children with 12 pictures of possible scenarios on a tablet; for example, a child doing PE or a child attending a birthday party, along with a statement like “Joe is good at PE,” or “Tom can’t eat the same foods as other kids at a birthday party because he will get ill.” The children are asked to rate each scenario twice – the first time as how much the child in the picture is “like me” or how often the picture depicts a child who is “how I would like to be.” This measure is not mentioned in any other articles other than the two Eiser articles, except for systematic reviews that reference Eiser 2000.
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Functional Status II-R (FSII-R)–FSIIR Infants: Functional Status II Revised, long version, Infants
Generic Measure domains: Communication, Mobility, Mood, Energy, Play, Sleep, Eating And Toileting Patterns. FSIIR Infants- General health; total functional status; responsiveness Summary of development: Stein & Jessop (1982) worked with the Pediatric Ambulatory Care Treatment Study (PACTS), a large-scale, longitudinal study of chronically ill children. Stein & Jessop (1982) used their clinical experience, interviewed experts, and conducted literature searches to identify instruments that measure illness burden and functional status of children with various medical conditions. Qualitative interviews with families of children with chronic diseases were done to help identify common themes (Stein & Jessop 1989). Stein & Jessop (1990) developed the FSIIR based on an earlier measure, the FSI, which measures ADL in adults. The FSI was modeled for adults. FSIIR is for people aged 0-16, and there are five different versions, which vary depending upon age intervals and slightly different domain categories that are age-appropriate, and the number of items: infants, toddlers, preschoolers, and school-age children. The newest short version was designed to measure overall wellbeing of people aged 0-16. Five versions: Infants, Toddlers, Preschoolers, School children, Short version
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Functional Status II-R (FSII-R)–FSIIR Preschoolers
Generic Measure domains: Communication, Mobility, Mood, Energy, Play, Sleep, Eating And Toileting Patterns. FSIIR Pre-Schoolers- General health; total functional status; activity Summary of development: Stein & Jessop (1982) worked with the Pediatric Ambulatory Care Treatment Study (PACTS), a large-scale, longitudinal study of chronically ill children. Stein & Jessop (1982) used their clinical experience, interviewed experts, and conducted literature searches to identify instruments that measure illness burden and functional status of children with various medical conditions. Qualitative interviews with families of children with chronic diseases were done to help identify common themes (Stein & Jessop 1989). Stein & Jessop (1990) developed the FSIIR based on an earlier measure, the FSI, which measures ADL in adults. The FSI was modeled for adults. FSIIR is for people aged 0-16, and there are five different versions, which vary depending upon age intervals and slightly different domain categories that are age-appropriate, and the number of items: infants, toddlers, preschoolers, and school-age children. The newest short version was designed to measure overall wellbeing of people aged 0-16. Five versions: Infants, Toddlers, Preschoolers, School children, Short version
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Functional Status II-R (FSII-R)–FSIIR School children
Generic Measure domains: Communication, Mobility, Mood, Energy, Play, Sleep, Eating And Toileting Patterns. FSIIR School Children- General health; total functional status; interpersonal functioning Summary of development: Stein & Jessop (1982) worked with the Pediatric Ambulatory Care Treatment Study (PACTS), a large-scale, longitudinal study of chronically ill children. Stein & Jessop (1982) used their clinical experience, interviewed experts, and conducted literature searches to identify instruments that measure illness burden and functional status of children with various medical conditions. Qualitative interviews with families of children with chronic diseases were done to help identify common themes (Stein & Jessop 1989). Stein & Jessop (1990) developed the FSIIR based on an earlier measure, the FSI, which measures ADL in adults. The FSI was modeled for adults. FSIIR is for people aged 0-16, and there are five different versions, which vary depending upon age intervals and slightly different domain categories that are age-appropriate, and the number of items: infants, toddlers, preschoolers, and school-age children. The newest short version was designed to measure overall wellbeing of people aged 0-16. Five versions: Infants, Toddlers, Preschoolers, School children, Short version
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Functional Status II-R (FSII-R)–FSIIR Toddlers
Generic Measure domains: Communication, Mobility, Mood, Energy, Play, Sleep, Eating And Toileting Patterns. FSIIR Toddlers- General health; total functional status; responsiveness Summary of development: Stein & Jessop (1982) worked with the Pediatric Ambulatory Care Treatment Study (PACTS), a large-scale, longitudinal study of chronically ill children. Stein & Jessop (1982) used their clinical experience, interviewed experts, and conducted literature searches to identify instruments that measure illness burden and functional status of children with various medical conditions. Qualitative interviews with families of children with chronic diseases were done to help identify common themes (Stein & Jessop 1989). Stein & Jessop (1990) developed the FSIIR based on an earlier measure, the FSI, which measures ADL in adults. The FSI was modeled for adults. FSIIR is for people aged 0-16, and there are five different versions, which vary depending upon age intervals and slightly different domain categories that are age-appropriate, and the number of items: infants, toddlers, preschoolers, and school-age children. The newest short version was designed to measure overall wellbeing of people aged 0-16. Five versions: Infants, Toddlers, Preschoolers, School children, Short version
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Functional Status II-R (FSII-R)–FSIIR-14: FSIIR 14 items (short version)
Generic Measure domains: Communication, Mobility, Mood, Energy, Play, Sleep, Eating And Toileting Patterns. FSIIR-14 (Short Form)- A range of questions on general health Summary of development: Stein & Jessop (1982) worked with the Pediatric Ambulatory Care Treatment Study (PACTS), a large-scale, longitudinal study of chronically ill children. Stein & Jessop (1982) used their clinical experience, interviewed experts, and conducted literature searches to identify instruments that measure illness burden and functional status of children with various medical conditions. Qualitative interviews with families of children with chronic diseases were done to help identify common themes (Stein & Jessop 1989). Stein & Jessop (1990) developed the FSIIR based on an earlier measure, the FSI, which measures ADL in adults. The FSI was modeled for adults. FSIIR is for people aged 0-16, and there are five different versions, which vary depending upon age intervals and slightly different domain categories that are age-appropriate, and the number of items: infants, toddlers, preschoolers, and school-age children. The newest short version was designed to measure overall wellbeing of people aged 0-16. Five versions: Infants, Toddlers, Preschoolers, School children, Short version
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GCQ Generic Children’s Quality of Life
Generic measure Measure domains: General affect; peer relationships; attainments; relationships with parents; general satisfaction Summary of development: The Generic Children's Quality of Life (GCQ) was developed to differentiate between healthy children and children with chronic illnesses (Collier 2000). The common themes from interviews with school children were used to formulate 25 questions that comprise the measure. According to Collier 1997, they had four points in mind when developing this questionnaire: 1) it can be used for both healthy children and those with chronic illnesses; 2) it would be based on children’s perceptions of good health, not parents’ views; 3) the measure would be child-friendly and easy for kids to understand; and 4) the concepts of health would be relative to the degree it matters to the child. Initially, the GCQ had 22 questions. After two pilot tests (Marlow, 1995; Hall, 1995) the measure was expanded to 25 questions. There are two forms of this measure; one for male children and one for females. The difference is that the children pictured on the GCQ are either visually male or female.
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Health Dialogue Questionnaire (HDQ-10)
Generic Measure domains: Physical, Mental, Social Summary of development: Holmström and colleagues (2012) distributed the Health Dialogue Questionnaire (HDQ) to six-year- old children and their parents in Sweden between 2006-2009. The questionnaires focus on promoting positive health. After two pilot studies using the original questionnaires, the HDQ was narrowed to 15 questions. The HDQ domain concepts are presented in an age-appropriate way and given to children in schools in Sweden at ages 6, 10, 13, and 16, to track growth and development over time. The HDQ is administered by school nurses, who provide questionnaires and verbal information to parents and students, and who are also responsible for providing students with feedback. This measure was originally developed and tested in Swedish. We did not find any psychometric testing of an English version. Four versions: ages 6, 10, 13, and 16 (HDQ-6, HDQ-10, HDQ-13, HDQ-16)
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Health Dialogue Questionnaire (HDQ-13)
Generic Measure domains: Physical, Mental, Social Summary of development: Holmström and colleagues (2012) distributed the Health Dialogue Questionnaire (HDQ) to six-year- old children and their parents in Sweden between 2006-2009. The questionnaires focus on promoting positive health. After two pilot studies using the original questionnaires, the HDQ was narrowed to 15 questions. The HDQ domain concepts are presented in an age-appropriate way and given to children in schools in Sweden at ages 6, 10, 13, and 16, to track growth and development over time. The HDQ is administered by school nurses, who provide questionnaires and verbal information to parents and students, and who are also responsible for providing students with feedback. This measure was originally developed and tested in Swedish. We did not find any psychometric testing of an English version. Four versions: ages 6, 10, 13, and 16 (HDQ-6, HDQ-10, HDQ-13, HDQ-16)