Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings

Table 4 Distribution of HRQoL and mental health as self-report in siblings and comparison to norm data

	Siblings				Norm data^db		Sample vs. norm data: one sample t-test
	n	M	[95% CI]	SD	M	SD	p	d
KIDSCREEN-27
Emotional symptoms	31	48.4	[45.17; 51.70]	8.90	50.0	10.00	.335	-0.18
Conduct problems	31	50.8	[47.54; 54.07]	8.91	50.0	10.00	.618	0.09
Hyperactivity	31	53.1	[49.33; 56.87]	10.29	50.0	10.00	.104	0.30
Peer problems	31	51.4	[47.78; 54.97]	9.80	50.0	10.00	.440	0.14
Prosocial behavior	31	52.3	[47.85; 56.74]	12.11	50.0	10.00	.300	0.19
SDQ
Emotional symptoms	31	3.1	[2.16; 4.09]	2.63	2.3	1.9	.089	0.30
Conduct problems	31	1.4	[0.96; 1.88]	1.26	2.0	1.4	.015	-0.48*
Hyperactivity	31	3.9	[3.12; 4.76]	2.24	3.7	2.0	.562	0.09
Peer problems	31	2.5	[1.80; 3.23]	1.95	2.0	1.6	.150	0.26
Prosocial behavior	31	8.5	[7.86; 9.09]	1.67	7.7	1.7	.015	0.47*
Total	31	11.0	[9.03; 12.97]	5.37	10.0	4.6	.308	0.19

Note. Possible range for the SDQ subscales 0–10 and total score 0–40. Higher scores represent lower mental health for all subscales, except prosocial behavior, where lower scores correspond to more difficulties in prosocial behavior. CI Confidence interval
^bNorm data of the SDQ children and adolescents, self-report [40]
^dNorm data of the KIDSCREEN-27 children and adolescents, self-report [35]
^*p < .05. d = Cohen’s d

ISSN: 1471-2431