The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey

Table 4 Intercorrelations between demographic, caregiver and child factors

Variable	n	1	2	3	4	5	6	7	8	9	10	11	12	13
1. Distress (cg)	134	–
2. PSIN (cg)	149	0.40^***	–
3. HRQoL (c) Impairments (c)	107	− 0.46^***	0.18	–
4. Physical function ^a	149	0.30^**	0.32^**	− 0.55^***	–
5. Mental function ^a	149	0.35^**	0.19	− 0.37^**	0.36^***	–
6. Social function ^a	149	0.52^***	0.25^*	− 0.68^***	0.38^***	0.54^***	–
7. Mother vs father ^b	145	− 0.16	− 0.11	0.19^*	− 0.16	− 0.07	− 0.09	–
8. Hospitalization (past year, c) ^a	149	0.18	0.22^*	− 0.31^*	0.29^***	0.03	0.13	0.02	–
9. Age (cg)	133	− 0.03	− 0.05	− 0.03	− 0.20	− 0.02	0.02	0.17^*	− 0.31^**	–
10. Time since diagnosis	136	− 0.04	− 0.13	− 0.04	− 0.07	0.26^*	0.18	0.09	− 0.30^**	0.56^***	–
11. Age (c) ^c	149	0.02	− 0.05	− 0 .16	− 0.13	0.04	0.11	0.04	− 0.31^**	0.75^***	0.75^***	–
12. Children per family ^d	149	0.13	0.03	− 0.01	0.03	0.08	0.22^*	− 0.06	0.09	0.01	0.00	− 0.04	–
13. Education level (cg) ^e	133	− 0.05	0.08	− 0.08	− 0.01	− 0.01	− 0.01	0.09	0.03	− 0.07	− 0.11	− 0.19^**	− 0.09	–
14. Partnership (cg) ^a	133	0.06	0.04	− 0.13	0.11	− 0.09	− 0.09	− 0.02	0.17^*	− 0.23^**	− 0.27^**	− 0.28^**	0.19^*	0.15

Correlation coefficients: r, Pearson’s correlation coefficient for metric variables; r_b, biserial correlation coefficient for metric and artificial binary variables; r_pb, point-biserial correlation coefficient for metric and binary variables; r_τ, Kendall’s Tau rank correlation coefficient for metric and ordinary variables; r_ϕ, Phi-coefficient for binary variables; r_rb, rank-biserial correlation coefficient estimated with Spearman’s correlation coefficient rho for ordinal and binary data
Distress = Thermometer score (0–10) on the DT-P, Distress Thermometer for Parents
Abbreviations: (cg), caregiver. (c), children with rare disease. PSIN, overall psychosocial information need (transformed sum score). HRQoL, caregiver-reported Health-related quality of life measured with the DISABKIDS chronic generic measure, short version-proxy (DCGM-12)
^a0 = no, 1 = yes. ^b0 = mother, 1 = father. ^cMean age of children with RD per family in case of more than one child with RD. ^d Total number including healthy children
^e1 = basic school qualification, 2 = intermediate school qualification, 3 = higher education entrance qualification, 4 = university degree or higher
^***p < 0.001 (two-tailed). ^**p < 0.01 (two-tailed). ^*p < 0.05 (two-tailed). Significant correlations (p < 0.05) are presented in bold

ISSN: 1750-1172