Table 1

Clinical and demographic data of the patient sample (participants and dropouts are shown separately) and results of psychosocial assessment using the Distress Thermometer, the EORTC-QLQ-C30 and EORTC-QLQ-BN20, and the SCNS SF34-G at t1 are displayed

Total study sample (t1) n = 173 (100%)Patients with complete follow-up (t1 and t2) n = 141 (82%)Patients without follow-up (no t2) n = 32 (19%)
deceased n = 14 (8%)dropout (non-death-related) n = 18 (10%)
Time since t1 in months
Mean (SD, Min–Max)5.34 (2.5, 1.4–13.8)5.31 (2.6, 1.4–1.3)5.62 (3.7, 1.6–13.8)5.03 (0.0, 5.0–5.0)
Median, Q1–Q35.0 (3.2–6.2)4.8 (3.1–6.7)3.7 (2.9–9.0)5.0 (5.0–5.0)
Age in years*
Mean (SD, Min–Max)51 (14, 21–78)50 (14, 21–78)62 (12, 37–76)51 (13, 29–75)
Sex n (%)
male92 (53)72 (51)8 (57)12 (67)
female81 (47)69 (49)6 (43)6 (33)
Living situation*, n (%)
single39 (22)30 (21)2 (14)7 (39)
in relationship124 (72)102 (72)12 (86)10 (56)
unknown10 (7)9 (7)-1 (5)
WHO grade*, n (%)
LGG (WHO I and II)32 (19)26 (18)-6 (33)
HGG (WHO III and IV)141 (81)115 (82)14 (100)12 (67)
Tumor localization I*, n (%)
frontal75 (43)68 (48)3 (21)4 (22)
temporal48 (28)38 (27)7 (50)3 (17)
parietal23 (13)18 (13)3 (21)2 (11)
occipital12 (7)6 (4)1 (7)5 (28)
other15 (9)11 (8)-4 (22)
Tumor localization II *, n (%)
eloquent87 (50)71 (50)8 (57)8 (44)
non eloquent85 (49)69 (49)6 (43)10 (56)
n.a.1 (1)1 (1)--
Extent of resection, n (%)
subtotal resection/biopsy68 (39)55 (39)10 (71)3 (17)
complete resection102 (59)83 (59)4 (29)15 (83)
n.a.3 (2)3 (2)--
Ongoing chemotherapy*, n (%)
yes63 (36)44 (31)11 (79)8 (44)
no110 (64)97 (69)3 (21)10 (56)
Surgery for recurrent tumor*, n (%)
yes56 (32)45 (32)6 (43)5 (28)
no117 (68)96 (68)8 (57)13 (72)
Karnofsky Peformance Status (KPS)*
Median (SD, range)90 (40–100)90 (40–100)70 (60–90)90 (10–100)
KPS < 70, n (%)18 (10.4)7 (5.0)4 (22.2)7 (50.0)
KPS ≥ 70, n (%)151 (87.3)130 (92.2)14 (77.8)7 (50.0)
n.a.4 (2.3)4 (2.8)--
Time since diagnosis in months*
Mean (SD, range)46 (49, 2–278)52 (54, 28–279)31 (41, 2–125)60 (55, 4–173)
Median, Q1–Q334 (10–70)35 (14–69)13 (8–34)47 (7–95)
< 3 years, n (%)89 (51)71 (50)11 (79)7 (39)
≥ 3 years, n (%)76 (44)65 (46)3 (21)8 (44)
n.a.8 (5)5 (4)-3 (17)
Value of Distress Thermometer*
Mean (SD, range)4.6 (2.7; 0.0–10.0)4.6 (2.8; 0.0–10.0)5.2 (2.3; 0.0–9.0)4.4 (2.5; 0.0–8.0)
< 6 (n, %)109 (63)88 (62)9 (64)12 (67)
≥ 6 (n, %)57 (33)46 (33)5 (36)6 (33)
n.a.7 (4)7 (5)--
Selected EORTC-QLQ-C30 and EORTC-QLQ-BN20 Scores*, Mean (SD)
C30 Global Health Status/QoL61.0 (22.7)62.1 (23.0)54.2 (22.3)57.9 (20.9)
C30 Physical functioning74.7 (25.6)77.1 (24.8)56.2 (28.8)70.4 (24.2)
C30 Emotional functioning59.4 (27.4)59.3 (28.2)59.5 (23.3)60.3 (24.9)
C30 Cognitive functioning63.0 (32.5)64.0 (32.5)50.0 (33.3)65.7 (31.4)
BN20 Future uncertainty39.3 (29.2)38.8 (29.9)38.8 (25.9)43.8 (27.3)
BN20 Motor dysfunction25.0 (27.2)21.6 (26.1)42.9 (31.4)36.4 (25.2)
SCNS-SF34G Scores*
Physical and daily living needs
Mean (SD)
19.2 (21.4; 0.0–83.3)19.8 (22.7)14.7 (13.9)18.1 (14.8)
Median (Q1 – Q3)12.5 (0.0–25.0)12.5 (0–29.2)12.5 (4.2–22.9)16.7 (7.3–26.0)
Psychological needs
Mean (SD)
26.9 (27.8; 0.0–95.0)27.4 (28.6)25.7 (27.9)24.3 (22.8)
Median (Q1 – Q3)17.5 (5.0–45.0)17.5 (5.0–46.3)12.5 (1.3–48.8)11.3 (5.0–45.0)
Patient care and support needs
Mean (SD)
10.5 (19.1; 0.0–93.8)10.2 (18.3)10.7 (24.3)13.0 (21.7)
Median (Q1 – Q3)0.0 (0.0–12.5)0.0 (0–12.5)0.0 (0.0–10.9)0.0 (0.0–21.9)
Health system and information needs Mean (SD)22.1 (27.3; 0.0–100.0)22.2 (27.4)13.5 (19.8)27.0 (30.7)
Median (Q1 – Q3)11.4 (0.0–36.4)11.0 (0.0–36.4)4.5 (2.3–19.3)15.9 (0.0–53.3)
Sexuality needs
Mean (SD)
13.4 (21.8; 0.0–100.0)14.6 (22.5)5.8 (14.2)9.8 (21.1)
Median (Q1 – Q3)0.0 (0.0–16.7)0.0 (0.0–25.0)0.0 (0.0–4.2)0.0 (0.0–12.5)
Total study sample (t1) n = 173 (100%)Patients with complete follow-up (t1 and t2) n = 141 (82%)Patients without follow-up (no t2) n = 32 (19%)
deceased n = 14 (8%)dropout (non-death-related) n = 18 (10%)
Time since t1 in months
Mean (SD, Min–Max)5.34 (2.5, 1.4–13.8)5.31 (2.6, 1.4–1.3)5.62 (3.7, 1.6–13.8)5.03 (0.0, 5.0–5.0)
Median, Q1–Q35.0 (3.2–6.2)4.8 (3.1–6.7)3.7 (2.9–9.0)5.0 (5.0–5.0)
Age in years*
Mean (SD, Min–Max)51 (14, 21–78)50 (14, 21–78)62 (12, 37–76)51 (13, 29–75)
Sex n (%)
male92 (53)72 (51)8 (57)12 (67)
female81 (47)69 (49)6 (43)6 (33)
Living situation*, n (%)
single39 (22)30 (21)2 (14)7 (39)
in relationship124 (72)102 (72)12 (86)10 (56)
unknown10 (7)9 (7)-1 (5)
WHO grade*, n (%)
LGG (WHO I and II)32 (19)26 (18)-6 (33)
HGG (WHO III and IV)141 (81)115 (82)14 (100)12 (67)
Tumor localization I*, n (%)
frontal75 (43)68 (48)3 (21)4 (22)
temporal48 (28)38 (27)7 (50)3 (17)
parietal23 (13)18 (13)3 (21)2 (11)
occipital12 (7)6 (4)1 (7)5 (28)
other15 (9)11 (8)-4 (22)
Tumor localization II *, n (%)
eloquent87 (50)71 (50)8 (57)8 (44)
non eloquent85 (49)69 (49)6 (43)10 (56)
n.a.1 (1)1 (1)--
Extent of resection, n (%)
subtotal resection/biopsy68 (39)55 (39)10 (71)3 (17)
complete resection102 (59)83 (59)4 (29)15 (83)
n.a.3 (2)3 (2)--
Ongoing chemotherapy*, n (%)
yes63 (36)44 (31)11 (79)8 (44)
no110 (64)97 (69)3 (21)10 (56)
Surgery for recurrent tumor*, n (%)
yes56 (32)45 (32)6 (43)5 (28)
no117 (68)96 (68)8 (57)13 (72)
Karnofsky Peformance Status (KPS)*
Median (SD, range)90 (40–100)90 (40–100)70 (60–90)90 (10–100)
KPS < 70, n (%)18 (10.4)7 (5.0)4 (22.2)7 (50.0)
KPS ≥ 70, n (%)151 (87.3)130 (92.2)14 (77.8)7 (50.0)
n.a.4 (2.3)4 (2.8)--
Time since diagnosis in months*
Mean (SD, range)46 (49, 2–278)52 (54, 28–279)31 (41, 2–125)60 (55, 4–173)
Median, Q1–Q334 (10–70)35 (14–69)13 (8–34)47 (7–95)
< 3 years, n (%)89 (51)71 (50)11 (79)7 (39)
≥ 3 years, n (%)76 (44)65 (46)3 (21)8 (44)
n.a.8 (5)5 (4)-3 (17)
Value of Distress Thermometer*
Mean (SD, range)4.6 (2.7; 0.0–10.0)4.6 (2.8; 0.0–10.0)5.2 (2.3; 0.0–9.0)4.4 (2.5; 0.0–8.0)
< 6 (n, %)109 (63)88 (62)9 (64)12 (67)
≥ 6 (n, %)57 (33)46 (33)5 (36)6 (33)
n.a.7 (4)7 (5)--
Selected EORTC-QLQ-C30 and EORTC-QLQ-BN20 Scores*, Mean (SD)
C30 Global Health Status/QoL61.0 (22.7)62.1 (23.0)54.2 (22.3)57.9 (20.9)
C30 Physical functioning74.7 (25.6)77.1 (24.8)56.2 (28.8)70.4 (24.2)
C30 Emotional functioning59.4 (27.4)59.3 (28.2)59.5 (23.3)60.3 (24.9)
C30 Cognitive functioning63.0 (32.5)64.0 (32.5)50.0 (33.3)65.7 (31.4)
BN20 Future uncertainty39.3 (29.2)38.8 (29.9)38.8 (25.9)43.8 (27.3)
BN20 Motor dysfunction25.0 (27.2)21.6 (26.1)42.9 (31.4)36.4 (25.2)
SCNS-SF34G Scores*
Physical and daily living needs
Mean (SD)
19.2 (21.4; 0.0–83.3)19.8 (22.7)14.7 (13.9)18.1 (14.8)
Median (Q1 – Q3)12.5 (0.0–25.0)12.5 (0–29.2)12.5 (4.2–22.9)16.7 (7.3–26.0)
Psychological needs
Mean (SD)
26.9 (27.8; 0.0–95.0)27.4 (28.6)25.7 (27.9)24.3 (22.8)
Median (Q1 – Q3)17.5 (5.0–45.0)17.5 (5.0–46.3)12.5 (1.3–48.8)11.3 (5.0–45.0)
Patient care and support needs
Mean (SD)
10.5 (19.1; 0.0–93.8)10.2 (18.3)10.7 (24.3)13.0 (21.7)
Median (Q1 – Q3)0.0 (0.0–12.5)0.0 (0–12.5)0.0 (0.0–10.9)0.0 (0.0–21.9)
Health system and information needs Mean (SD)22.1 (27.3; 0.0–100.0)22.2 (27.4)13.5 (19.8)27.0 (30.7)
Median (Q1 – Q3)11.4 (0.0–36.4)11.0 (0.0–36.4)4.5 (2.3–19.3)15.9 (0.0–53.3)
Sexuality needs
Mean (SD)
13.4 (21.8; 0.0–100.0)14.6 (22.5)5.8 (14.2)9.8 (21.1)
Median (Q1 – Q3)0.0 (0.0–16.7)0.0 (0.0–25.0)0.0 (0.0–4.2)0.0 (0.0–12.5)

*Socio-demographic/clinical status information and results of questionnaires at t1

1Time to t2

2Time until death

3Time until drop out, censored after 5 months

4Time to event (t2/Death/Censoring)

HGG, high-grade glioma; LGG, low-grade glioma

Table 1

Clinical and demographic data of the patient sample (participants and dropouts are shown separately) and results of psychosocial assessment using the Distress Thermometer, the EORTC-QLQ-C30 and EORTC-QLQ-BN20, and the SCNS SF34-G at t1 are displayed

Total study sample (t1) n = 173 (100%)Patients with complete follow-up (t1 and t2) n = 141 (82%)Patients without follow-up (no t2) n = 32 (19%)
deceased n = 14 (8%)dropout (non-death-related) n = 18 (10%)
Time since t1 in months
Mean (SD, Min–Max)5.34 (2.5, 1.4–13.8)5.31 (2.6, 1.4–1.3)5.62 (3.7, 1.6–13.8)5.03 (0.0, 5.0–5.0)
Median, Q1–Q35.0 (3.2–6.2)4.8 (3.1–6.7)3.7 (2.9–9.0)5.0 (5.0–5.0)
Age in years*
Mean (SD, Min–Max)51 (14, 21–78)50 (14, 21–78)62 (12, 37–76)51 (13, 29–75)
Sex n (%)
male92 (53)72 (51)8 (57)12 (67)
female81 (47)69 (49)6 (43)6 (33)
Living situation*, n (%)
single39 (22)30 (21)2 (14)7 (39)
in relationship124 (72)102 (72)12 (86)10 (56)
unknown10 (7)9 (7)-1 (5)
WHO grade*, n (%)
LGG (WHO I and II)32 (19)26 (18)-6 (33)
HGG (WHO III and IV)141 (81)115 (82)14 (100)12 (67)
Tumor localization I*, n (%)
frontal75 (43)68 (48)3 (21)4 (22)
temporal48 (28)38 (27)7 (50)3 (17)
parietal23 (13)18 (13)3 (21)2 (11)
occipital12 (7)6 (4)1 (7)5 (28)
other15 (9)11 (8)-4 (22)
Tumor localization II *, n (%)
eloquent87 (50)71 (50)8 (57)8 (44)
non eloquent85 (49)69 (49)6 (43)10 (56)
n.a.1 (1)1 (1)--
Extent of resection, n (%)
subtotal resection/biopsy68 (39)55 (39)10 (71)3 (17)
complete resection102 (59)83 (59)4 (29)15 (83)
n.a.3 (2)3 (2)--
Ongoing chemotherapy*, n (%)
yes63 (36)44 (31)11 (79)8 (44)
no110 (64)97 (69)3 (21)10 (56)
Surgery for recurrent tumor*, n (%)
yes56 (32)45 (32)6 (43)5 (28)
no117 (68)96 (68)8 (57)13 (72)
Karnofsky Peformance Status (KPS)*
Median (SD, range)90 (40–100)90 (40–100)70 (60–90)90 (10–100)
KPS < 70, n (%)18 (10.4)7 (5.0)4 (22.2)7 (50.0)
KPS ≥ 70, n (%)151 (87.3)130 (92.2)14 (77.8)7 (50.0)
n.a.4 (2.3)4 (2.8)--
Time since diagnosis in months*
Mean (SD, range)46 (49, 2–278)52 (54, 28–279)31 (41, 2–125)60 (55, 4–173)
Median, Q1–Q334 (10–70)35 (14–69)13 (8–34)47 (7–95)
< 3 years, n (%)89 (51)71 (50)11 (79)7 (39)
≥ 3 years, n (%)76 (44)65 (46)3 (21)8 (44)
n.a.8 (5)5 (4)-3 (17)
Value of Distress Thermometer*
Mean (SD, range)4.6 (2.7; 0.0–10.0)4.6 (2.8; 0.0–10.0)5.2 (2.3; 0.0–9.0)4.4 (2.5; 0.0–8.0)
< 6 (n, %)109 (63)88 (62)9 (64)12 (67)
≥ 6 (n, %)57 (33)46 (33)5 (36)6 (33)
n.a.7 (4)7 (5)--
Selected EORTC-QLQ-C30 and EORTC-QLQ-BN20 Scores*, Mean (SD)
C30 Global Health Status/QoL61.0 (22.7)62.1 (23.0)54.2 (22.3)57.9 (20.9)
C30 Physical functioning74.7 (25.6)77.1 (24.8)56.2 (28.8)70.4 (24.2)
C30 Emotional functioning59.4 (27.4)59.3 (28.2)59.5 (23.3)60.3 (24.9)
C30 Cognitive functioning63.0 (32.5)64.0 (32.5)50.0 (33.3)65.7 (31.4)
BN20 Future uncertainty39.3 (29.2)38.8 (29.9)38.8 (25.9)43.8 (27.3)
BN20 Motor dysfunction25.0 (27.2)21.6 (26.1)42.9 (31.4)36.4 (25.2)
SCNS-SF34G Scores*
Physical and daily living needs
Mean (SD)
19.2 (21.4; 0.0–83.3)19.8 (22.7)14.7 (13.9)18.1 (14.8)
Median (Q1 – Q3)12.5 (0.0–25.0)12.5 (0–29.2)12.5 (4.2–22.9)16.7 (7.3–26.0)
Psychological needs
Mean (SD)
26.9 (27.8; 0.0–95.0)27.4 (28.6)25.7 (27.9)24.3 (22.8)
Median (Q1 – Q3)17.5 (5.0–45.0)17.5 (5.0–46.3)12.5 (1.3–48.8)11.3 (5.0–45.0)
Patient care and support needs
Mean (SD)
10.5 (19.1; 0.0–93.8)10.2 (18.3)10.7 (24.3)13.0 (21.7)
Median (Q1 – Q3)0.0 (0.0–12.5)0.0 (0–12.5)0.0 (0.0–10.9)0.0 (0.0–21.9)
Health system and information needs Mean (SD)22.1 (27.3; 0.0–100.0)22.2 (27.4)13.5 (19.8)27.0 (30.7)
Median (Q1 – Q3)11.4 (0.0–36.4)11.0 (0.0–36.4)4.5 (2.3–19.3)15.9 (0.0–53.3)
Sexuality needs
Mean (SD)
13.4 (21.8; 0.0–100.0)14.6 (22.5)5.8 (14.2)9.8 (21.1)
Median (Q1 – Q3)0.0 (0.0–16.7)0.0 (0.0–25.0)0.0 (0.0–4.2)0.0 (0.0–12.5)
Total study sample (t1) n = 173 (100%)Patients with complete follow-up (t1 and t2) n = 141 (82%)Patients without follow-up (no t2) n = 32 (19%)
deceased n = 14 (8%)dropout (non-death-related) n = 18 (10%)
Time since t1 in months
Mean (SD, Min–Max)5.34 (2.5, 1.4–13.8)5.31 (2.6, 1.4–1.3)5.62 (3.7, 1.6–13.8)5.03 (0.0, 5.0–5.0)
Median, Q1–Q35.0 (3.2–6.2)4.8 (3.1–6.7)3.7 (2.9–9.0)5.0 (5.0–5.0)
Age in years*
Mean (SD, Min–Max)51 (14, 21–78)50 (14, 21–78)62 (12, 37–76)51 (13, 29–75)
Sex n (%)
male92 (53)72 (51)8 (57)12 (67)
female81 (47)69 (49)6 (43)6 (33)
Living situation*, n (%)
single39 (22)30 (21)2 (14)7 (39)
in relationship124 (72)102 (72)12 (86)10 (56)
unknown10 (7)9 (7)-1 (5)
WHO grade*, n (%)
LGG (WHO I and II)32 (19)26 (18)-6 (33)
HGG (WHO III and IV)141 (81)115 (82)14 (100)12 (67)
Tumor localization I*, n (%)
frontal75 (43)68 (48)3 (21)4 (22)
temporal48 (28)38 (27)7 (50)3 (17)
parietal23 (13)18 (13)3 (21)2 (11)
occipital12 (7)6 (4)1 (7)5 (28)
other15 (9)11 (8)-4 (22)
Tumor localization II *, n (%)
eloquent87 (50)71 (50)8 (57)8 (44)
non eloquent85 (49)69 (49)6 (43)10 (56)
n.a.1 (1)1 (1)--
Extent of resection, n (%)
subtotal resection/biopsy68 (39)55 (39)10 (71)3 (17)
complete resection102 (59)83 (59)4 (29)15 (83)
n.a.3 (2)3 (2)--
Ongoing chemotherapy*, n (%)
yes63 (36)44 (31)11 (79)8 (44)
no110 (64)97 (69)3 (21)10 (56)
Surgery for recurrent tumor*, n (%)
yes56 (32)45 (32)6 (43)5 (28)
no117 (68)96 (68)8 (57)13 (72)
Karnofsky Peformance Status (KPS)*
Median (SD, range)90 (40–100)90 (40–100)70 (60–90)90 (10–100)
KPS < 70, n (%)18 (10.4)7 (5.0)4 (22.2)7 (50.0)
KPS ≥ 70, n (%)151 (87.3)130 (92.2)14 (77.8)7 (50.0)
n.a.4 (2.3)4 (2.8)--
Time since diagnosis in months*
Mean (SD, range)46 (49, 2–278)52 (54, 28–279)31 (41, 2–125)60 (55, 4–173)
Median, Q1–Q334 (10–70)35 (14–69)13 (8–34)47 (7–95)
< 3 years, n (%)89 (51)71 (50)11 (79)7 (39)
≥ 3 years, n (%)76 (44)65 (46)3 (21)8 (44)
n.a.8 (5)5 (4)-3 (17)
Value of Distress Thermometer*
Mean (SD, range)4.6 (2.7; 0.0–10.0)4.6 (2.8; 0.0–10.0)5.2 (2.3; 0.0–9.0)4.4 (2.5; 0.0–8.0)
< 6 (n, %)109 (63)88 (62)9 (64)12 (67)
≥ 6 (n, %)57 (33)46 (33)5 (36)6 (33)
n.a.7 (4)7 (5)--
Selected EORTC-QLQ-C30 and EORTC-QLQ-BN20 Scores*, Mean (SD)
C30 Global Health Status/QoL61.0 (22.7)62.1 (23.0)54.2 (22.3)57.9 (20.9)
C30 Physical functioning74.7 (25.6)77.1 (24.8)56.2 (28.8)70.4 (24.2)
C30 Emotional functioning59.4 (27.4)59.3 (28.2)59.5 (23.3)60.3 (24.9)
C30 Cognitive functioning63.0 (32.5)64.0 (32.5)50.0 (33.3)65.7 (31.4)
BN20 Future uncertainty39.3 (29.2)38.8 (29.9)38.8 (25.9)43.8 (27.3)
BN20 Motor dysfunction25.0 (27.2)21.6 (26.1)42.9 (31.4)36.4 (25.2)
SCNS-SF34G Scores*
Physical and daily living needs
Mean (SD)
19.2 (21.4; 0.0–83.3)19.8 (22.7)14.7 (13.9)18.1 (14.8)
Median (Q1 – Q3)12.5 (0.0–25.0)12.5 (0–29.2)12.5 (4.2–22.9)16.7 (7.3–26.0)
Psychological needs
Mean (SD)
26.9 (27.8; 0.0–95.0)27.4 (28.6)25.7 (27.9)24.3 (22.8)
Median (Q1 – Q3)17.5 (5.0–45.0)17.5 (5.0–46.3)12.5 (1.3–48.8)11.3 (5.0–45.0)
Patient care and support needs
Mean (SD)
10.5 (19.1; 0.0–93.8)10.2 (18.3)10.7 (24.3)13.0 (21.7)
Median (Q1 – Q3)0.0 (0.0–12.5)0.0 (0–12.5)0.0 (0.0–10.9)0.0 (0.0–21.9)
Health system and information needs Mean (SD)22.1 (27.3; 0.0–100.0)22.2 (27.4)13.5 (19.8)27.0 (30.7)
Median (Q1 – Q3)11.4 (0.0–36.4)11.0 (0.0–36.4)4.5 (2.3–19.3)15.9 (0.0–53.3)
Sexuality needs
Mean (SD)
13.4 (21.8; 0.0–100.0)14.6 (22.5)5.8 (14.2)9.8 (21.1)
Median (Q1 – Q3)0.0 (0.0–16.7)0.0 (0.0–25.0)0.0 (0.0–4.2)0.0 (0.0–12.5)

*Socio-demographic/clinical status information and results of questionnaires at t1

1Time to t2

2Time until death

3Time until drop out, censored after 5 months

4Time to event (t2/Death/Censoring)

HGG, high-grade glioma; LGG, low-grade glioma

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