HRQOL measures used in studies of pediatric patients with SCD
| Screening tool . | Questionnaires available, metrics for completion . | Summary of domains evaluated . | Additional notes . | References . |
|---|---|---|---|---|
| Child Health Questionnaire | Parent-Report Form: 50 questions, 10-15 min | Global general health | Appropriate for parental reporting for children 5-18 y old. Child self-report validated for children ≥8-10 y old. | 51,52 |
| Global general behavior | 1 mo recall, except change in health, which asks for 1 y recall. Responses vary from 4 to 6 level options. | |||
| Parent-Report | General health | Parent report forms provide 2 summary scores for physical and psychosocial health. | ||
| Short Form (CHQ_PF28): 28 questions, 5-10 min | Bodily pain | |||
| Self-esteem | ||||
| Child Self-Report Form (CHQ_CF87): 87 questions, 14 min | Physical functioning | |||
| Physical health summary | ||||
| Child Self-Report | Psychosocial health summary | |||
| Short Form (CHQ_CF45): 45 questions, 11 min | Role functioning: physical | |||
| General behavior | ||||
| Role emotional: behavior | ||||
| Family activities | ||||
| Mental health | ||||
| Family cohesion | ||||
| Parental impact: emotional | ||||
| Parental impact: time | ||||
| Pediatric Quality of Life (PedsQL) | Can be facilitated or read to patient or family member | Generic Core | Provides summary scores for overall, physical, and psychosocial health. | 49,53 |
| PedsQL Generic Core Scales: 23 items, 4 min | Physical functioning | Parent report and child self-report forms separated into developmentally appropriate questions available for children 2-18 y old (5-18 y old if self-reporting). | ||
| Emotional functioning | Different referent timeframes in the SCD module, 1 mo vs 7 d (acute). | |||
| PedsQL Generic Core | Social functioning | |||
| Short Form: 15 items | School functioning | |||
| Sickle Cell Disease Module | ||||
| PedsQL Sickle Cell Disease Module | PedsQL SCD: 43 items | Pain | ||
| Pain-related functioning | ||||
| Pain management | ||||
| Health-related worries | ||||
| Treatment | ||||
| Communication with care providers | ||||
| Patient-Reported Outcomes Measurement Information System (PROMIS) | PROMIS Parent-Report | Global health measure including physical and mental health. | Self-report measures appropriate for children 8-17 y old. Parent reports available for children 5-17 y old. | 54-56 |
| PROMIS Child Self-Report | Includes 22-25 domains related to physical, mental, and social health including: | Shown to be responsive to acute pain in SCD. | ||
| Physical functioning | Available Proxy Profiles of varying length (25, 37, or 49 questions). | |||
| Pain | ||||
| Fatigue | ||||
| Emotional distress – anxiety, depression, anger | ||||
| Social functioning | ||||
| Family and peer relationships | ||||
| Physical activity |
| Screening tool . | Questionnaires available, metrics for completion . | Summary of domains evaluated . | Additional notes . | References . |
|---|---|---|---|---|
| Child Health Questionnaire | Parent-Report Form: 50 questions, 10-15 min | Global general health | Appropriate for parental reporting for children 5-18 y old. Child self-report validated for children ≥8-10 y old. | 51,52 |
| Global general behavior | 1 mo recall, except change in health, which asks for 1 y recall. Responses vary from 4 to 6 level options. | |||
| Parent-Report | General health | Parent report forms provide 2 summary scores for physical and psychosocial health. | ||
| Short Form (CHQ_PF28): 28 questions, 5-10 min | Bodily pain | |||
| Self-esteem | ||||
| Child Self-Report Form (CHQ_CF87): 87 questions, 14 min | Physical functioning | |||
| Physical health summary | ||||
| Child Self-Report | Psychosocial health summary | |||
| Short Form (CHQ_CF45): 45 questions, 11 min | Role functioning: physical | |||
| General behavior | ||||
| Role emotional: behavior | ||||
| Family activities | ||||
| Mental health | ||||
| Family cohesion | ||||
| Parental impact: emotional | ||||
| Parental impact: time | ||||
| Pediatric Quality of Life (PedsQL) | Can be facilitated or read to patient or family member | Generic Core | Provides summary scores for overall, physical, and psychosocial health. | 49,53 |
| PedsQL Generic Core Scales: 23 items, 4 min | Physical functioning | Parent report and child self-report forms separated into developmentally appropriate questions available for children 2-18 y old (5-18 y old if self-reporting). | ||
| Emotional functioning | Different referent timeframes in the SCD module, 1 mo vs 7 d (acute). | |||
| PedsQL Generic Core | Social functioning | |||
| Short Form: 15 items | School functioning | |||
| Sickle Cell Disease Module | ||||
| PedsQL Sickle Cell Disease Module | PedsQL SCD: 43 items | Pain | ||
| Pain-related functioning | ||||
| Pain management | ||||
| Health-related worries | ||||
| Treatment | ||||
| Communication with care providers | ||||
| Patient-Reported Outcomes Measurement Information System (PROMIS) | PROMIS Parent-Report | Global health measure including physical and mental health. | Self-report measures appropriate for children 8-17 y old. Parent reports available for children 5-17 y old. | 54-56 |
| PROMIS Child Self-Report | Includes 22-25 domains related to physical, mental, and social health including: | Shown to be responsive to acute pain in SCD. | ||
| Physical functioning | Available Proxy Profiles of varying length (25, 37, or 49 questions). | |||
| Pain | ||||
| Fatigue | ||||
| Emotional distress – anxiety, depression, anger | ||||
| Social functioning | ||||
| Family and peer relationships | ||||
| Physical activity |