Assessing quality of life in pediatric fibrous dysplasia and McCune Albright syndrome: PEDS-QL and HADS data from the Fibrous Dysplasia Foundation Patient Registry

Journal of Patient-Reported Outcomes

Table 2 Distribution of Total and Core Scores on the PEDS-QL in Relation to Published Benchmarks

PEDS-QL parent proxy scores for participants aged 2–7 compared to Varni (2003) Healthy Child mean and one standard deviation (at risk) benchmark (N = 13)
		% Scoring above 2003 HC Mean	% Scoring less than 1 standard deviation below HC Mean	% Scoring more than 1 standard deviation below HC Mean
Total Score	> 81.34, 81.34, 68.18	38	15	46
Physical Function	> 83.26, 83.26, 69.38	29	21	50
Emotional Function	> 80.28, 80.28, 61.64	36	43	21
Social Function	> 82.15, 82.15, 64.74	43	29	29
School Function	> 76.91, 76.19, 59.98	46	23	31
PEDS-QL parent proxy scores for participants aged 2–7 compared to Huang (2009) benchmarks (N = 13)
	Cutoff Scores	% Scoring Above Mild benchmark	% Scoring Below Mild benchmark	% Scoring Below Moderate benchmark	% Scoring Below Serious benchmark
Total Score	> 83, 83, 79, 77	38	0	15	46
Physical Function	> 91, 91, 88, 84	14	14	0	72
Emotional Function	> 75, 75, 75, 75	43	0	0	57
Social Function	> 85, 85, 80, 80	43	0	0	57
School Function	> 75, 75, 75, 67	0	46	8	46
PEDS-QL self-report scores for participants aged 8–17 compared to Varni (2003) Healthy Child mean and one standard deviation (at risk) benchmark (N = 18)
		% Scoring above 2003 HC Mean	% Scoring less than 1 standard deviation below HC Mean	% Scoring more than 1 standard deviation below HC Mean
Total Score	> 82.87, 82.87, 69.71	11	28	61
Physical Function	> 86.86, 86.86, 72.98	22	22	56
Emotional Function	> 78.21, 78.21, 59.57	17	22	61
Social Function	> 84.04, 84.04, 66.61	28	22	50
School Function	> 79.92, 79.92, 62.99	22	17	61