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 1–9 of 88 results
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‘Vecu et Sante Perque des Adolescents’ (VSP-A)
Generic measure Measure domains: Psychological well-being; energy/vitality; friends; parents; leisure; school Summary of development: TBD
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16D
Generic measure Measure Domains: Mobility, vision, hearing, breathing, sleeping, eating, speech, elimination, usual activities (school/hobbies), friends, physical appearance, mental function, discomfort and symptoms, depression, stress, vitality. Summary of development: 15D was developed for adults. The 15D was revised for adolescents ages 12-15 that resulted in the 16D (Apajasalo 1996a). This revision was guided by specialists’ and adolescents’ input (both school children and children will health conditions). There was then a second revision for children ages 8-11, resulting in the 17D (Apajasalo 1996b). This revision was guided by specialists’ and parent’s input. The overall score is based on valuations using visual analog scales. The 16D scoring is based on values obtained from school children age 12-15. The 17D scoring is based on values obtained from parents of children age 8-11. It is important to note that health utility scales that are made in the econometric tradition, such as the 16D and 17D, 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. There are no published tests of the English versions of these questionnaires as they were originally developed in Finnish.
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Aboriginal Children’s Health and Well-being Measure (ACHWM)
Generic measure Measure domains: Spiritual, Emotional, Physical, Mental Summary of development: The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to enable Aboriginal health leaders to gather information on the health of children at a local community level. The measure aims to be culturally appropriate model of health and wellbeing for Aboriginal communities in Canada (Young, 2013). Its purpose is to provide Indigenous communities or organizations with an overview of the health and well-being status of the children and youth in their communities. Focus groups were conducted to explore the concepts of health and well-being using storytelling, photovoice, and many opportunities to engage in activities. Through innovative methods, children and youth identified 206 concepts representing the 4 quadrants of the Medicine Wheel: emotional, spiritual, physical, and mental. These concepts were refocused, in collaboration with the community, to create a new 60-item measure of health and well-being that was primarily positive in focus. The questionnaire was finalized after expert panels, advisory committee meetings, and community consultation.
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About My Asthma
Asthma-specific Measure domains: Stressors of Asthma Summary of development: About My Asthma was designed to evaluate symptoms and HRQoL in children with asthma. The AMA was adapted from the “About My Illness” measure and items were rated in order of relevance by respiratory experts. The measure evaluates the children’s level of stress by asking “thoughts and feelings” about asthma symptoms and functional limitations that affect QoL. The About My Asthma questionnaire was pilot tested on seven children in a hospital asthma clinic, then was further tested on a group of 35 children attending an asthma day camp. Originally 55 questions, the authors of the AMA recommend removing 11 questions for 44 total items.
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Adolescent AQOL-6D
Generic measure Measure domains: Independent living (physical ability), social and family relationships, mental health, coping, pain, senses (vision, hearing, communication) Summary of development: Moodie and colleagues (2010) conducted focus groups of adolescents ages 12-18 in four Pacific countries (Australia, New Zeland, Figi, Tonga) to adapt the adult version of AQOL-6D (Richardson 2004). It is important to note that health utility scales that are made in the econometric tradition, such as the AQOL-6D, 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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Adolescent Asthma Quality of Life Questionnaire
Asthma-specific Measure domains: Symptoms, Medication, Physical Activities, Emotion, Social Interactions, Positive Effects Summary of development: Rutishauser et al. created a measure designed to be self-reported by adolescents (ages 12-17)(Rutishauser 1998). Children with asthma aged 12-17 were recruited from Asthma clinics and interviewed to determine relevant items for the measure. Item reduction and validation was used to improve the measure.
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Adolescent Health Utility Measure (AHUM)
Generic measure Measure domains: self-care, pain, mobility (limitations walking around), perceptions of strenuous activities, self-image, and health perceptions. Summary of development: The goal of Beusterien & colleagues (2012) was to develop a multi-attribute measure, the adolescent health utility measure (AHUM) that focuses on key impacts of treatment for chronic conditions among older children and adolescents. The measure was based on the CHQ, EQ5D, and SF6D, as well as parent and child interviews. It is important to note that health utility scales that are made in the econometric tradition, such as the AHUM, 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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Asthma Control Questionnaire
Asthma-specific Measure domains: Symptom Control and Rescue Inhaler Use, plus a third component of forced expiratory volume in 1 second recorded by clinician Summary of development: This measure for adults and children is designed to be a brief assessment of the control one has over their asthma symptoms. Asthma experts from around the world were asked about the most relevant symptoms to determine the seven questions for this measure. From the list of symptoms, Juniper and colleagues (1999) identified the top 5: being woken at night by symptoms, waking in the mornings with symptoms, limitation of daily activities, shortness of breath and wheeze. Respondents are asked to rate the level of severity of their asthma when answering six questions; the 7th question is a test of forced expiratory volume, the amount of air you exhale in 1 second, recorded by a clinician. The ACQ has been validated for use in children aged 6–16 years, and children ages 6-10 have a trained interviewer administer the questionnaire (Juniper 2010). Here, we only include validation information from the children’s version.
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Asthma Control Test (ACT)
Asthma-specific Measure domains: Symptom Control and Use of Rescue Inhalers Summary of development: The Asthma Control Test (ACT) was developed for people ages 12 and older. An initial set of 22 questions was developed by clinicians. A sample of patients completed the questions and their asthma control was rated by a specialist. Stepwise logistic regression methods were used to identify the survey items with the greatest validity in discriminating between patients who differed in the specialist's rating of asthma control. The final questionnaire has 5 items (Nathan 2004). The original articles included participants as young as 12 and they were included in the analyses. There has been widespread use of this questionnaire since its development. However, we were unable to find any psychometric testing of the ACT exclusively in an adolescent sample.