Table 1.
Examples of general health profile measures applicable to children with neurodevelopmental disorders (NDDs)
| Instrumentsa | Domains | Number of items/questionnaires | Age | Raters | Used in children with NDD |
|---|---|---|---|---|---|
| Child Health and Illness Profile (CHIP): CHIP-CE and CHIP-AE [65] | CHIP-CE: satisfaction, comfort, resilience, risk avoidance CHIP-AE: satisfaction, discomfort, risk avoidance and resilience |
45 and 108 | CHIP-CE: 6–11 years CHIP-AE: 11–17 years |
Child self-report/proxy report (parent) | ASD [66] |
| Child Health Questionnaire (CHQ): CHQ-PF28, CHQ-PF50 andCHQ-CF87 [67] |
Physical functioning, role/social limitations, general health Perceptions, bodily pain/discomfort, family activities, parent impact, mental health, self-esteem, general behavior, family cohesion and change in health | 28, 50 and 87 | CHQ-PF28: 4–11 years CHQ-PF 50:5-18 years CHQ-CF87: 10 years or above |
Child self-report/proxy report (parent) | Epilepsy [68], ADHD [69] |
| Functional Status II-R [70] | Communications, mobility, mood, energy, play, sleep, eating and toileting patterns | 43 and 14 | 0–16 years | Child self-report/proxy report (parent) | Not found |
| Generic Children’s Quality of life Measure (GCQ) [71] | Worry, happiness, relationships with parents, general satisfaction, support, health/appearance, attainments | 25 | 6–14 years | Child self-report | Not found |
| Health Status Questionnaire [72] | Malformation, neuromotor function, seizure, hearing, communication, vision, cognitive and other physical disability | 8 clinical domains | 2 years or older | Proxy report (parents, healthcare professionals) | Not found |
| KIDSCREEN: KIDSCREEN-52, KIDSCREEN-27 and KIDSCREEN-10 [73] | Physical well-being, psychological well- being, moods and emotions, autonomy, parents, relations and home life, peers and social support, school environment, bullying and financial support | 52, 27 and 10 | 8–18 years | Child self-report/proxy report | ASD [74] |
| KINDL Questionnaire [75] | Psychological well-being, social relationships, physical functioning, everyday life activities | 24 and disease specific module | 3–17 years | Child self-reported/proxy report (parent) | CP [76] |
| Pediatric Quality of Life Inventory (PedsQLTM) [77] | Physical, social, emotional and school | 23 and 35 | 2–18 years | Child self-report/proxy report (parent) | ASD [78], Cerebellar malformations [79] |
| The Inventory of Measuring Quality of Life in Children and Adolescents (ILK questionnaire) [80] | School, family, social contact with peers, interests and recreational activities, physical health, psychological health, overall assessment of the quality of life, exposure to diagnostic and therapeutic | 9 thematic areas | 6–18 years | Child self-report/proxy report (adults and their medical doctors or therapists) | ASD [81] |
| The TNO-AZL Questionnaires for Children’s Health-Related Quality-of-Life (TACQOL) [82] | General physical functioning/complaints; functioning: motor, daily, cognitive, social, global emotional (negative and positive) | 56 and 43 | 6–15 years | Child self-report/proxy-report (others administered by parents) | Not found |
ASD autism spectrum disorder, ADHD attention-deficit-hyperactivity disorder, CP cerebral palsy
aThis is not a comprehensive list of the general health profile measures, but gives examples of instruments used most commonly in the field currently