Self-reported scores of questionnaires assessing quality of life, fatigue, depression, attentions deficits, and pain in association with maximum extent of disease
| Self-report (scale) . | Total . | Maximum extent of disease . | |||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| SS . | MFB . | MS RO– . | MS RO+ . | ||||||||||||
| N . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | |
| Total HRQOL score∗ (0-100) | 32 | 78.8 (16.2) | 81.0 (91.0-69.2) | 13 | 85.6 (9.3) | 88.0 (93.5-78.3) | 5 | 76.3 (15.4) | 81.5 (89.7-60.3) | 10 | 77.7 (18.5) | 80.4 (91.0-66.6) | 4 | 62.7 (21.6) | 58.1 (85.3-44.8) |
| Quality of life† (0-10) | 26 | 6.7 (2.5) | 7.0 (9.0-4.8) | 11 | 7.2 (2.3) | 8.0 (9.0-6.0) | 3 | 6.7 (3.5) | 7.0 (3.0;10.0)# | 8 | 5.9 (2.6) | 6.3 (7.8-3.5) | 4 | 6.6 (2.6) | 6.5 (9.1-4.3) |
| Total Fatigue score‡ (0-100) | 30 | 68.7 (19.8) | 68.8 (90.3-55.6) | 13 | 72.5 (16.9) | 72.2 (91.7-61.5) | 4 | 66.3 (19.7) | 64.6 (86.1-48.3) | 9 | 71.0 (18.7) | 69.4 (89.6-53.5) | 4 | 53.8 (30.5) | 44.4 (86.1-30.9) |
| Depression (MADRS-s)§ (0-54) | 26 | 9.8 (10.0) | 7.5 (13.8-2.0) | 11 | 7.9 (8.9) | 7.0 (10.0-2.0) | 3 | 4.7 (3.1) | 4.0 (2.0; 8.0)# | 8 | 11.0 (9.8) | 9.5 (20.8-1.5) | 4 | 16.3 (15.4) | 14.0 (31.8-3.0) |
| Hyperactivity|| (z score) | 32 | 0.00 | 13 | −0.18 (0.60) | −0.53 (−0.46 to −0.67) | 5 | 0.35 (1.4) | 0.09 (1.68 to −0.84) | 10 | −0.05 (1.05) | −0.22 (0.63 to −0.91) | 4 | 0.29 (1.36) | 0.48 (1.48 to −1.1) | |
| Inattention|| (z score) | 32 | 0.00 | 13 | −0.27 (0.67) | −0.12 (0.35 to −0.73) | 5 | 0.62 (0.94) | 0.33 (1.42 to −0.03) | 10 | −0.18 (1.14) | −0.51 (0.82 to −1.12) | 4 | 0.31 (1.38) | 0.6 (1.43 to –1.12) | |
| Pain¶ (0-10) | 21 | 3.5 (3.2) | 5.0 (6.5-0.0) | 9 | 2.8 (3.4) | 0.0 (6.0-0.0) | 2 | 3.0 (4.2) | 3.0 (0.0;6.0)# | 6 | 3.5 (2.6) | 4.0 (6.0-0.8) | 4 | 5.5 (3.7) | 7.0 (7.8-1.8) |
| Self-report (scale) . | Total . | Maximum extent of disease . | |||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| SS . | MFB . | MS RO– . | MS RO+ . | ||||||||||||
| N . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | n . | Mean (SD) . | Median (IQR) . | |
| Total HRQOL score∗ (0-100) | 32 | 78.8 (16.2) | 81.0 (91.0-69.2) | 13 | 85.6 (9.3) | 88.0 (93.5-78.3) | 5 | 76.3 (15.4) | 81.5 (89.7-60.3) | 10 | 77.7 (18.5) | 80.4 (91.0-66.6) | 4 | 62.7 (21.6) | 58.1 (85.3-44.8) |
| Quality of life† (0-10) | 26 | 6.7 (2.5) | 7.0 (9.0-4.8) | 11 | 7.2 (2.3) | 8.0 (9.0-6.0) | 3 | 6.7 (3.5) | 7.0 (3.0;10.0)# | 8 | 5.9 (2.6) | 6.3 (7.8-3.5) | 4 | 6.6 (2.6) | 6.5 (9.1-4.3) |
| Total Fatigue score‡ (0-100) | 30 | 68.7 (19.8) | 68.8 (90.3-55.6) | 13 | 72.5 (16.9) | 72.2 (91.7-61.5) | 4 | 66.3 (19.7) | 64.6 (86.1-48.3) | 9 | 71.0 (18.7) | 69.4 (89.6-53.5) | 4 | 53.8 (30.5) | 44.4 (86.1-30.9) |
| Depression (MADRS-s)§ (0-54) | 26 | 9.8 (10.0) | 7.5 (13.8-2.0) | 11 | 7.9 (8.9) | 7.0 (10.0-2.0) | 3 | 4.7 (3.1) | 4.0 (2.0; 8.0)# | 8 | 11.0 (9.8) | 9.5 (20.8-1.5) | 4 | 16.3 (15.4) | 14.0 (31.8-3.0) |
| Hyperactivity|| (z score) | 32 | 0.00 | 13 | −0.18 (0.60) | −0.53 (−0.46 to −0.67) | 5 | 0.35 (1.4) | 0.09 (1.68 to −0.84) | 10 | −0.05 (1.05) | −0.22 (0.63 to −0.91) | 4 | 0.29 (1.36) | 0.48 (1.48 to −1.1) | |
| Inattention|| (z score) | 32 | 0.00 | 13 | −0.27 (0.67) | −0.12 (0.35 to −0.73) | 5 | 0.62 (0.94) | 0.33 (1.42 to −0.03) | 10 | −0.18 (1.14) | −0.51 (0.82 to −1.12) | 4 | 0.31 (1.38) | 0.6 (1.43 to –1.12) | |
| Pain¶ (0-10) | 21 | 3.5 (3.2) | 5.0 (6.5-0.0) | 9 | 2.8 (3.4) | 0.0 (6.0-0.0) | 2 | 3.0 (4.2) | 3.0 (0.0;6.0)# | 6 | 3.5 (2.6) | 4.0 (6.0-0.8) | 4 | 5.5 (3.7) | 7.0 (7.8-1.8) |
MFB, multifocal bone; MS, multisystem, RO+, with risk organ (liver, spleen, and/or hematopoietic system) involvement; RO-, without risk organ involvement; ND-LCH, LCH-associated neurodegeneration.
5-point Likert scale, the PedsQL Generic Core Scale 4.0, ranges from 0 (worst quality of life) to 100 (best quality of life).
Experience the last year on a 10-point scale from 0 (worst possible quality of life) to 10 (best possible quality of life).
5-point Likert scale, the PedsQL Multidimensional Fatigue Scale, ranges from 0 (most fatigue) to 100 (less fatigue).
7-point Likert scale, cutoff points are as follows: 0 to 12, no depression; 13 to 19, mild depression; 20 to 34, moderate depression; and ≥35, severe depression.
Adult ADHD self-report scales v1.1 (patients ≥18 years) and Conners 3 short form (patients <18 years) transformed to a z score, which compares each individual to the mean of the cohort.
Pain experienced the last year on a 10-point scale from 0 (no pain) to 10 (worst possible pain).
min;max.