Pediatric Quality of Life
Showing 82–90 of 127 results
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Pediatric Quality of Life Inventory- (PedsQL) 4.0 Generic Core Scales
Generic with Disease-Specific Modules
Measure domains: Functioning: physical; emotional; social; school
Infant (>2 years) Version Domains: Functioning: physical; emotional; social; cognitive; physical symptoms
Summary of development:
The PedsQL was derived from the Pediatric Cancer Quality of Life Inventory (PCQL). The PedsQL measures the patient's and the parent's perceptions of the patient's HRQOL, as defined in terms of the impact of disease and treatment on an individual’s physical, psychological, and social functioning, and by disease/treatment-specific symptoms; and higher PedsQL scores indicate higher HRQOL (Varni, 1999).
The original PedsQL4.0 Generic Core Scales instrument can be scored as a 23-item Total Score, an 8-item Physical Health Summary subscale, and a 15-item Psychosocial Health Summary subscale. The Psychosocial Health Summary subscale is a 5-item Emotional Functioning subscale, a 5-item Social Functioning subscale, and a 5-item School Functioning sub-scale. Parallel items are used across different age groups and for proxy and self-report versions, differing primarily in developmentally appropriate wording and the use of the first- and third-person tense. The response scale for each item is “never”,“almost never”, “sometimes”, “often”, and “almost always.
The PedsQL4.0 SF15 is composed of 15 items from the original instrument. Items were retained if they loaded highly on their a priori conceptually derived subscale, based on a parent proxy-report factor analysis. The short form can be scored as a 15-item Total Score, 5-item Physical Health Summary subscale, 10-item Psychosocial Health Summary subscale, 4-item Emotional Functioning subscale, 3-item Social Functioning subscale, and 3-item School Functioning subscale.
The PedsQL™ 4.0 Generic Core Scales have been translated into over 60 languages. This page summarizes psychometric properties we found related to the English versions.
There are a variety of condition specific modules available to combine with the PedsQL generic core that are not evaluated here. These include:
- Arthritis module
- Asthma module
- Brain Tumor Module
- Cancer module
- Cardiac module
- Cerebral Palsy module
- Cognitive Functioning Scale
- Diabetes module
- Duchenne Muscular Dystrophy Module
- End Stage Renal Disease module
- Eosinophilic Esophagitis Module
- Eosinophilic Esophagitis Symptoms Scales
- Epilepsy Module
- Family Impact Module
- Gastrointestinal Symptoms Module
- Gastrointestinal Symptoms Scales
- General Well-Being Scale
- Health Care Satisfaction Generic Module
- Health Care Satisfaction Hematology/Oncology Specific Module
- Multidimensional Fatigue Scale
- Neurofibromatosis Type 1 Module
- Neuromuscular Module
- Oral Health Scale
- Rheumatology module
- Sickle Cell Disease Module
- Spinal Cord Injury Module
- Stem Cell Transplant Module
- Transplant Module
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Personal Wellbeing Index- School Children (PWI-SC)
Generic measure Measure domains: Standard of living, health, life achievement, personal relationships, personal safety, community connectedness, future security, Global QoL Summary of development: TBD
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Personal Wellbeing Index- School Children 8 items (PWI-SC-8)
Generic measure Measure domains: Standard of living, health, life achievement, personal relationships, personal safety, community connectedness, future security, food satisfaction Summary of development: TBD
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PQ-LES-Q (Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire)
Generic-Specific Modules
Measure domains: Health; mood/feelings; school/learning; helping at home; getting along with friends; getting along with family; play/free time; getting things done; love/affection; getting/buying things; place you live at; paying attention; energy level; feelings about yourself; global QoL
Summary of development: Endicott (1993) and colleagues developed the Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q) for depressed adults. The measure focuses on patients’ enjoyment of daily activities and is specifically designed for people with depressed mood. The pediatric version was developed from the adult measure and designed to be similar, but with some wording changed to be applicable to a younger population (Endicott 2006).
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Preschool Comprehensive Health Status Classification System (CHSCS-PS)
Generic measure Measure domains: Vision, Hearing, Speech, Mobility, Dexterity, Self-care, Emotion, Learning and Remembering, Thinking and Problem Solving, Pain, General Health and Behavior Summary of development: Studies aimed to develop a Multi-attribute Health Status Classification System (HSCS), to describe the functional health status of three-year old children, and to assess and report the overall health of preschool children (Saigal et al. 1998 & 2005). The HSCS-PS is a multidimensional measure of overall health, and existing systems such as HUI, Mark 2 & 3 were revised for application to a preschool population. It is important to note that health utility scales that are made in the econometric tradition, such as the CHSCS-PS, 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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PROMIS (Patient Reported Outcomes Measurement Information System) PGH7: PROMIS Pediatric Global Health Scale
Generic-Specific Modules
Measure domains: Overall health, quality of life, mental health, physical health, and social support
Summary of development:
The Pediatric Global Health (PGH-7) measure is dedicated to Health-Related Quality of Life assessment in children. It is an overall evaluation of one’s physical and mental health that is designed to mimic the adult PROMIS Global measure. The PGH-7 comprises a seven-item summary of a participant’s general, physical, mental, and social health. The measure can be administered as a patient self-report for children aged 8–17 years or as a parent proxy report for children aged 5–17 years. There is also a 7+2 version with questions about sleep and energy, but these items are not used in scoring.
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PROMIS EC (Early Childhood)
Generic-Specific Modules
Measure domains: (A) Global health. (B) Mental health: anger; anxiety; depressive symptoms; positive affect; engagement—curiosity; engagement—persistence; self-control—adaptability; Self-control—self-regulation. (C) Social relationships. (D) Physical health: physical activity; sleep health
Summary of development: In 2009, the PROMIS 10 Global measure for adults was introduced (Hays et al 2009), then a global measure, the PROMIS PGH, for children followed (Forrest 2014), and the PROMIS-EC Global Health is based off these global measures. Blackwell & colleagues developed the PROMIS Early Childhood (EC) from PROMIS Parent Proxy measures for children ages 5-17. Adaptations were made to the EC version, so it was developmentally appropriate for younger children. The developers performed literature reviews, sought advice from experts in pediatric health fields, and interviewed diverse groups of parents of children 1-5 years old to ensure the PROMIS-EC measure was developmentally appropriate and able to accurately measure young children’s global health.
There are 12 PROMIS EC measures: Global Health, Sleep Problems, Physical Activity, Anger/Irritability, Anxiety, Depressive Symptoms, Positive Affect, Engagement—Curiosity, Engagement—Persistence, Self-Regulation—Flexibility, Self-Regulation—Frustration Tolerance, and Social Relationships (Cella 2022). This review only addresses the Global Health measure.
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PWI-SC: Personal Well-being Index-School Children
Generic-Specific Modules
Measure domains: Standard of living; health; life achievement; personal relationships; personal safety; community connectedness; future security; food satisfaction, Global QoL
Summary of development:
The PWI-SC is a parallel version of the Personal Wellbeing Index-Adult that has been re-worded for use with high-school age children. Both adult and pediatric versions of the PWI consist of seven items, with a response scale from 0 to 10 (Casas, 2017). The PWI-SC was validated in Australia (Tomyn & Cummins, 2011), using the original 11-point bipolar scale. However, the latest manual of the PWI recommends using unipolar scales ranging from not at all satisfied to totally satisfied (Casas, 2017). The items ask about: Satisfaction with all the things you have; Your health; The things you want to be good at; Your relationships with people in general; How safe you feel; Doing things away from home; and What may happen to you later in your life (Casas, 2017).
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QLQC- Quality of Life Questionnaire for Children
Generic-Specific Modules
Measure domains: Physical: complaints; limitations; handicaps. Psychological: general wellbeing; cognitive; self-concept; anxious depressed. social relations: parents (child-report only); siblings; peers; school; social conflicts; leisure-time activities
Summary of development: This is a Dutch-origin questionnaire that focuses on children aged 8-12(Bouman, 1999). We were not able to find an English version or an evaluation of an English version of this questionnaire.