A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents

Figures & data

Table 1 The survey population was formed from the following diagnoses

ICD-8 codes	Diagnoses
208.99	Polycythemia vera
287.29	Essential thrombocythemia
209	Myelofibrosis
205.19	Chronic myeloid leukemia
ICD-10 codes	Diagnoses
D45	Polycythemia vera
D47.3	Essential thrombocythemia
D75.2	Essential thrombocythemia
D47.4	Osteomyelofibrosis
C94.4	Osteomyelofibrosis acuta
C94.5	Osteomyelofibrosis acuta
C92.1	Chronic myeloid leukemia
D47.1	Chronic myeloproliferative disease

Abbreviation: ICD, international classification of diseases.

Figure 1 Flowchart of the survey population.

Abbreviation: MPN, myeloproliferative neoplasm.

Table 2 Differences between respondents and nonrespondents and differences between online and paper submitters in demographics, MPN subtype, and duration of disease

Demographic and disease characteristic	Respondents	Nonrespondents	p-Value for difference	Online	Paper	p-Value for difference
Total, n (%)	2613 (62)	1623 (38)		460 (18)	2153 (82)
Age, mean ± SD, median	67.9±12.9, 69.6	69.4±15.0, 70.9	0.004	60.5±12.1, 62.3	69.5±12.48, 70.9	<0.0001
Sex, n (%)
Female	1435 (61)	915 (39)	>0.1*	202 (14)	1233 (86)	<0.0001*
Male	1178 (62)	708 (38)		258 (22)	920 (78)
Female, years, n (%)
20–29	9 (56)	7 (44)	<0.0001	4 (44)	5 (56)	<0.0001
30–39	29 (54)	25 (46)		8 (28)	21 (72)
40–49	98 (59)	69 (41)		22 (22)	76 (78)
50–59	208 (66)	107 (34)		49 (24)	159 (76)
60–69	375 (67)	181 (33)		76 (20)	299 (80)
70–79	436 (67)	211 (33)		37 (8)	399 (92)
80–89	247 (51)	234 (49)		5 (2)	242 (98)
≥90	33 (29)	81 (71)		1 (3)	32 (97)
Male, years, n (%)
20–29	7 (54)	6 (46)	0.003	3 (43)	4 (57)	<0.0001
30–39	29 (57)	22 (43)		13 (45)	16 (55)
40–49	85 (56)	67 (44)		37 (44)	48 (56)
50–59	179 (61)	115 (39)		61 (34)	118 (66)
60–69	331 (64)	185 (36)		87 (26)	244 (74)
70–79	373 (68)	177 (32)		53 (14)	320 (86)
80–89	158 (59)	112 (41)		3 (2)	155 (98)
≥90	16 (40)	24 (60)		1 (6)	15 (94)
Living arrangement, n (%)
Living alone	834 (51)	787 (49)	<0.0001**	88 (11)	746 (89)	<0.0001**
Living with someone	1758 (69)	786 (31)		370 (21)	1388 (79)
Missing, n	21	50		2	19
Education, n (%)
Basic school	768 (52)	698 (48)	<0.0001**	64 (8)	704 (92)	<0.0001**
Upper secondary/vocational school	1199 (67)	591 (33)		234 (20)	965 (80)
Higher education	589 (71)	246 (29)		154 (26)	435 (74)
Missing, n	57	88		8	49
Employment, n (%)
Employed	782 (66)	396 (24)	0.0006**	243 (31)	539 (69)	<0.0001**
Unemployed	62 (56)	49 (44)		20 (32)	42 (68)
Retired	1768 (60)	1178 (40)		197 (11)	1571 (89)
Missing, n	1	0		0	1
Ethnicity, n (%)
Danish/Western	2481 (63)	1432 (37)	<0.0001**	442 (18)	2039 (82)	0.1**
Non-Western	111 (44)	141 (56)		16 (14)	95 (86)
Missing, n	21	50		2	19
MPN subtype, n (%)
ET	816 (60)	549 (40)	0.02**	164 (20)	751 (80)	>0.1**
PV	915 (60)	606 (40)		143 (16)	673 (74)
MF	88 (69)	39 (31)		12 (14)	76 (86)
CML	362 (66)	185 (44)		88 (24)	274 (76)
MPN unclassified	432 (64)	244 (36)		53 (12)	379 (88)
Duration of disease, years, n (%)
<1	176 (67)	86 (33)	0.06**	33 (19)	143 (81)	>0.1**
1–4	909 (63)	544 (37)		172 (19)	737 (81)
≥5	1528 (61)	993 (39)		255 (17)	1273 (83)

Notes:

* Adjusted for age.

** Adjusted for age and sex.

Abbreviations: CML, chronic myeloid leukemia; ET, essential thrombocythemia; MF, myelofibrosis; MPN, myeloproliferative neoplasm; PV, polycythemia vera.