Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

Figures & data

Figure 1. Flowchart of study population.

Table 1. Mean MOS scale scores, standard deviations and effect sizes of parents of children with cancer and the reference sample (de Weerd et al., 2004).

	Healthy adults (de Weerd et al., 2004)^a	Parents of children with cancer^b
MOS scale	Mean (SD)	Mean (SD)	% Clinical	Cohen’s d
Sleep disturbance	20.6 (17.9)	29.6 (22.5)*	30	0.44
Snoring	33.0 (28.7)	31.1 (29.7)	14	0.07
Waking up short of breath/with headache	12.1 (16.8)	13.1 (21.0)	21	0.05
Somnolence	21.4 (16.8)	24.2 (18.1)**	26	0.16
Sleep adequacy^c	69.6 (21.5)	53.8 (28.1)*	42	0.64
SLP-9^d	21.7 (13.8)	30.7 (18.6)*	37	0.55

^aN = 479–488 across subscales; ^bN = 334–346 across subscales.

Higher scores indicate more sleep problems, except for ^csleep adequacy where higher scores indicate better sleep; ^d= 9-item sleep problem index.

*p < 0.001; **p < 0.01.

Table 2. Distress thermometer score, perceived social support, parenting problems and wish for referral of parents of children with cancer and the reference sample. (Van Oers et al., 2017).

	Parents of healthy children (van Oers et al., 2017)^a	Parents of children with cancer^b
Mean thermometer score (SD)	3.2 (2.7)	3.3 (2.8)
Median thermometer score (min-max)	2 (0–10)	3 (0–10)
% Clinical distress/thermometer score ≥ 4	38.2	41.1
% Perceived sufficient social support	92.6	82.1*
% Without parenting problems	77.3	67.5*
% Wish for referral (yes/maybe)	15.3	30.5*

^aN = 1105–1134 across subscales; ^bN = 318–342 across subscales. *p < 0.001.

Table 3. Sociodemographic and child characteristics for each group of parents, classified by sleep and distress (n = 332).

	Parents with no sleep problems, low distress (N = 165, 50%)	Parents with sleep problems, low distress (N = 30, 9%)	Parents with high distress, no sleep problems (N = 45, 13%)	Parents with sleep problems and high distress (N = 92, 28%)
Sociodemographic variables
Parent
Mother (%)	81 (49.1)	18 (60.0)	25 (55.6)	68 (73.9)
Father (%)	84 (50.9)	12 (40.0)	20 (44.4)	24 (26.1)
Median parents’ age (min–max)	44.0 (28–72)	41.0 (25–54)	46.0 (27–62)	43.0 (29–61)
Marital status
Married/living together (%)	153 (92.7)	27 (90.0)	39 (86.7)	74 (80.4)
Single/divorced/widow(er)/LAT^a (%)	12 (7.3)	3 (10.0)	6 (13.3)	18 (19.6)
Country of birth
The Netherlands (%)	152 (92.1)	27 (90.0)	42 (93.3)	79 (85.9)
Other (%)	13 (7.9)	3 (10.0)	3 (6.7)	13 (14.1)
Educational level^b
Low (%)	17 (10.3)	0 (0.0)	3 (6.7)	9 (9.8)
Middle (%)	68 (41.2)	12 (40.0)	23 (51.1)	46 (50.0)
High (%)	73 (44.2)	18 (60.0)	18 (40.0)	36 (39.1)
Other or unknown (%)	7 (4.2)	0 (0.0)	1 (2.2)	1 (1.1)
Paid employment
Yes (%)	139 (84.2)	22 (73.3)	33 (73.3)	62 (67.4)
No (%)	20 (12.1)	8 (26.7)	11 (24.4)	29 (31.5)
Unknown (%)	6 (3.6)	0 (0.0)	1 (2.2)	1 (1.1)
Chronic illness
No (%)	141 (85.5)	23 (76.7)	39 (86.7)	59 (64.1)
Yes (%)	17 (10.3)	7 (23.3)	5 (11.1)	31 (33.7)
Unknown (%)	7 (4.2)	0 (0.0)	1 (2.2)	2 (2.2)
Child characteristics
Gender
Female (%)	79 (47.9)	15 (50.0)	19 (42.2)	46 (50.0)
Male (%)	86 (52.1)	15 (50.0)	26 (57.8)	46 (50.0)
Median child’s age (min-max)	10.0 (2–23)	7.5 (2–23)	12.0 (1–21)	10.0 (2–23)
Diagnosis
Hematologic malignancy (%)	53 (32.1)	11 (36.7)	14 (31.1)	32 (34.8)
Brain tumor (%)	37 (22.4)	6 (20.0)	8 (17.8)	23 (25.0)
Solid tumor (%)	61 (37.0)	7 (23.3)	18 (40.0)	29 (31.5)
Retinoblastoma (%)	14 (8.5)	6 (20.0)	5 (11.1)	8 (8.7)
Relapse/second tumor
No (%)	149 (90.3)	28 (93.3)	41 (91.1)	84 (91.3)
Yes (%)	16 (9.7)	2 (6.7)	4 (8.9)	8 (8.7)
Median TSD^c in years (min-max)	3.7 (0.8–5.7)	3.3 (0.8–5.6)	2.7 (0.9–5.1)	2.9 (0.9–5.7)
Cumulative treatment
Low risk (%)	42 (25.5)	9 (30.0)	5 (11.1)	19 (20.7)
Middle risk (%)	71 (43.0)	16 (53.3)	21 (46.7)	46 (50.0)
High risk (%)	52 (31.5)	5 (16.7)	19 (42.2)	27 (29.3)
Active treatment
No (%)	152 (92.1)	30 (100.0)	35 (77.8)	77 (83.7)
Yes (%)	13 (7.9)	0 (0.0)	10 (22.2)	15 (16.3)

^aLAT = living apart together; ^bEducational level defined according to Statistics Netherlands (CBS) Centraal Bureau voor de Statistiek, 2016): low educational level = no education, primary school, lower secondary education; middle educational level = upper secondary education, pre-university education, intermediate vocational education; high educational level = higher vocational education, university. Other: foreign education; ^c TSD = time since diagnosis

Table 4. Sleep and psychosocial characteristics for each group of parents, classified by sleep and distress (n = 332).

	Parents with no sleep problems, low distress (N = 165, 50%)	Parents with sleep problems, low distress (N = 30, 9%)	Parents with high distress, no sleep problems (N = 45, 13%)	Parents with sleep problems and high distress (N = 92, 28%)
Sleep characteristics
Use of sleep medication
No (%)	158 (95.8)	27 (90.0)	43 (95.6)	82 (89.1)
Yes (%)	1 (0.6)	3 (10.0)	1 (2.2)	9 (9.8)
Unknown (%)	6 (3.6)	0 (0.0)	1 (2.2)	1 (1.1)
Pre-existent sleeping difficulties
No (%)	150 (90.9)	21 (70.0)	38 (84.4)	70 (76.1)
Yes (%)	9 (5.5)	8 (26.7)	6 (13.3)	21 (22.8)
Unknown (%)	6 (3.6)	1 (3.3)	1 (2.2)	1 (1.1)
Median sleep duration in hours/night (min–max)	7.0 (5.0–11.0)	6.5 (4.0–8.0)	7.0 (5.0–9.0)	6.0 (4.0–9.0)
Optimal sleep
Yes	121 (73.3)	14 (46.7)	29 (64.4)	34 (37.0)
No	42 (25.5)	14 (46.7)	13 (28.9)	57 (62.0)
Unknown (%)	2 (1.2)	2 (6.7)	3 (6.7)	1 (1.1)
Mean score sleep disturbance (SD)	15.5 (11.8)	48.9 (19.3)	23.0 (13.1)	51.0 (19.5)
Mean score snoring (SD)	29.5 (27.9)	31.7 (31.9)	34.3 (32.5)	31.2 (30.9)
Mean score waking up short of breath/with headache (SD)	4.4 (11.5)	13.3 (19.2)	7.6 (12.5)	30.4 (25.9)
Mean score somnolence (SD)	15.1 (11.7)	33.3 (19.7)	20.8 (15.4)	37.8 (17.5)
Mean score sleep adequacy (SD)	71.0 (20.6)	31.0 (13.2)	61.3 (18.7)	26.7 (19.1)
Mean SLP-9 sum score (SD)	17.3 (9.1)	46.9 (10.7)	24.3 (26.7)	51.8 (11.2)
Psychosocial factors
Median distress thermometer score (min–max)	1.0 (0–3.5)	2.0 (0–3.5)	5.0 (4.0–9.0)	7.0 (4.0–10.0)
Perceived social support
Sufficient	143 (86.7)	23 (76.7)	31 (68.9)	54 (58.7)
Insufficient	12 (7.3)	4 (13.3)	9 (20.0)	29 (31.5)
Unknown	10 (6.1)	3 (10.0)	5 (11.1)	9 (9.8)
Wish for referral
Yes/maybe	26 (15.8)	6 (20.0)	15 (33.3)	47 (51.1)
No	130 (83.3)	23 (76.7)	27 (60.0)	37 (40.2)
Unknown	9 (5.5)	1 (3.3)	3 (6.7)	8 (8.7)
Parenting problems
No	134 (81.2)	20 (66.7)	27 (60.0)	41 (44.6)
Yes	29 (17.6)	10 (33.3)	18 (40.0)	49 (53.3)
Unknown	2 (1.2)	0 (0.0)	0 (0.0)	2 (2.2)

Table 5. Multilevel multinomial logistic regression: predictors of sleep problems and distress per group.

	Sleep problems, low distress^a	High distress, no sleep problems^a	Sleep problems and high distress^a
Parent variables	OR [95% C.I.]	OR [95% C.I.]	OR [95% C.I.]
Female parent gender	1.2 [0.5, 3.4]	1.1 [0.5, 2.4]	2.1 [1.1, 4.2]*
Chronic illness	1.4 [0.4, 4.7]	1.1 [0.3, 3.1]	2.8 [1.2, 6.5]*
Pre-existent sleep problems	12.4 [3.6, 43.4]***	2.4 [0.8, 11.3]	6.2 [2.0, 18.6]**
Child variables
Age (per one year increase)	0.9 [0.8, 1.0]*	1.0 [0.9, 1.0]	1.0 [0.9, 1.0]
High risk treatment vs low risk treatment	0.5 [0.1, 2.0]	3.9 [1.1, 13.7]*	1.1 [0.4, 2.9]
Middle risk treatment vs low risk treatment	1.6 [0.5, 4.4]	3.2 [1.0, 10.9]	1.8 [0.8, 4.2]
Psychosocial variables
Parenting problems	2.5 [1.0, 6.5]	3.3 [1.5, 7.5]**	4.4 [2.2, 9.1]***
Insufficient social support	1.5 [0.4, 5.7]	2.4 [0.8, 6.9]	3.7 [1.5, 9.1]**

^acompared to parents without sleep problems or distress (reference); *p < 0.05; **p < 0.01; *** p < 0.001.

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Data availability statement

The data of this study are available from the corresponding author (RvL), upon reasonable request.