Table II.
Mean and Standard Deviation Scores of Standardized Surveys
| Scales | M (SD) |
|---|---|
| Peds-QL FIM (range 0–100) (+) | |
| Physical | 36.49 (27.76) |
| Emotional | 40.44 (23.79) |
| Social | 36.65 (25.99) |
| Cognitive | 42.77 (27.26) |
| Communicationa | 62.30 (22.92) |
| Worry | 47.91 (23.97) |
| Daily activities | 25.00 (25.99) |
| Family relationships | 58.50 (25.17) |
| Parent HRQOL scoreb | 39.09 (22.37) |
| Total impact scorec | 43.76 (17.53) |
| PECI (range 0–4) | |
| Guilt/worry (−) | 2.23 (0.65) |
| Long-term uncertainty (−) | 1.75 (0.66) |
| Unresolved Sor/anger (−) | 1.97 (0.86) |
| Emotional resources (+)a | 2.59 (0.72) |
| Financial hardship (range 0–4) (−) | |
| Lost revenue | 2.31 (0.84) |
| Loss due to time spent caring for child | 2.33 (0.89) |
| Money spent due to illness affected family | 1.76 (0.65) |
| Taken out loans or sold property to meet expenditure | 1.66 (0.91) |
| Total score | 2.01 (0.63) |
| Local burden indicators (range 0–4) (−) | |
| Community perception | 1.82 (1.22) |
| Access to resources | 1.49 (1.03) |
| Local positive experience indicators (range 0–4) (+) | |
| Access to medication | 3.60 (0.82) |
| Knowledge about SCD has helped care for other children | 3.57 (0.92) |
| Create awareness about the disease | 3.70 (0.64) |
| Happy that child has survived | 3.53 (0.97) |
| Confident that child will have a bright future | 3.62 (0.82) |
| PHQ-2 (range 0–6) (−) | |
| Little interest/pleasure in doing things | 1.79 (1.07) |
| Feeling down, depressed, or hopeless | 1.94 (1.09) |
| Total score | 3.74 (1.97) |
Note. HRQOL = Health-Related Quality of Life; PECI = Parent Experience of Child’s Illness Scale; PedsQL FIM = Pediatric Quality of Life Family Impact Module; PHQ-2 = Patient Health Questionnaire-2; SCD = sickle cell disease. (+) indicates higher scores corresponding to better outcomes; (−) indicates higher scores indicate worse outcomes.
a
Subscale score had internal consistency values of 0.4 or below.
b
HRQOL is the average of the 20 items on the Physical, Emotional, Social, and Cognitive Functioning subscales.
c
Total score is the average of all 36 items.