Table 3.
Summary and assessment of QOL/HRQOL/FQOL instruments
| Name, authors | Short description age range | Sub-scales | Criteria for assessing QOL/HRQOL measures (see legend for definition of criteria)* | Comments and recommendations | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| HF/QOL | Fam | Focus | Opp | Self | # Items | R&V | ||||
| Generic instruments | ||||||||||
| PedsQL™(child or parent self-report) [68] Each 20 items | Versions (age):
|
Physical, Emotional, Social, Cognitive (school/work). | 1 | 2 | 1 | 3 | 1 | 3 | 3 | Do not use physical scale. Emotional, social and cognitive scales may be useful especially if comparing to typically developing youth. However, heavy focus on functioning. Strong psychometrics across many CHC and typically-developing peers. |
| CHQ Child (187 items) or parent (50 items) self-report [69] | Parent and child version developed by experts using literature and other instruments. | Behavior, bodily pain, general health, mental health, parent impact, emotional, physical functioning, parent impact time, emotional/behavioral role, physical and self-esteem. Physical and psycho-social summary scores. | 1 | 1 | 2 | 1 | 2 | 3 | 2 | Long; may be useful if specific subscales are of interest. No data on sensitivity to change. Multiple items with floor and ceiling effects. Not used extensively in Spina Bifida. Cerebral palsy comparison indicated it was outperformed by other measures [4]. |
| KID SCREEN [70] 27, 10 and 57-item self-report versions available | Ages 8–18. Developed and used primarily in Europe. | 5 domains:
|
3 | 3 | 3 | 3 | 3 | 3 | 3 | Only child generic instrument rated as 3 in all categories by Waters et al. [4]. No known use to date in US in children with Spina Bifida [7]. Focus groups, cognitive interviews and pilot testing 52 and 27-item versions. Validated in 12 European countries using over 22,000 children. Supported with internal and test-retest reliability. |
| WHOQOL-BRIEF The WHO QOL Group, 1998 [1] 26 items self-report adult instrument | Four domains. Shorter version of the original 100-item, 1997 instrument. | 4 domains:
|
3 | 3 | 2 | 3 | 3 | 2 | 3 | Preferred generic scale for adults with SB. Physical scale: while assessing the impact of physical status on QOL does so with items that do not automatically disadvantage individuals with a specific mobility-related impairment. Reference period: Last 2 weeks. Positively-worded and flexible for all conditions. (e.g. “Do you have enough energy for everyday life”?) Available at: |