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

Table 2 Overall distress and everyday problems experienced by family caregivers of children with RDs

	M (SD)	Possible range	Observed range
Distress thermometer score (overall distress) ^a	6.84 (2.43)	0–10	0–10
Mdn (IQR) ^a	8 (5.75–8)
Total problem score	17.4 (8.51)	0–39	0–36
Practical problems	1.82 (1.30)	0–7	0–5
Physical problems	3.88 (1.97)	0–7	0–7
Family/social problems	1.54 (1.30)	0–4	0–4
Cognitive problems	0.99 (0.89)	0–2	0–2
Emotional problems	5.40 (3.16)	0–12	0–11
Parenting problems	2.60 (1.84)	0–7	0–7

RD Rare disease. N = 136. Distress and problem scores were measured with the Distress Thermometer for parents (DT-P). For the thermometer score, higher scores = more distress. Problem domain scores represent the average number of problems in the respective problem list domain that caregivers experienced in the last week including today (yes-answers per participant). Please note that mean problem domain scores are dependent on the respective scale length
^aReduced N = 134; median (Mdn) and interquartile range (IQR) are reported because the distribution of thermometer scores was left-skewed (skewness = − 1.06, SE = 0.21)

ISSN: 1750-1172