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Table 2 HRQoL outcomes for eligible adult patients

From: Impact of neurofibromatosis type 1 with plexiform neurofibromas on the health-related quality of life and work productivity of adult patients and caregivers in the UK: a cross-sectional survey

Variable

Value (N = 51)

EQ-5D-5La

 Number of responses, n

35

Mobility

 No problems, n (%)

21 (60.0)

 Slight problems, n (%)

11 (31.4)

 Moderate problems, n (%)

2 (5.71)

 Severe problems, n (%)

1 (2.86)

 Unable to walk about, n (%)

0

Self-care

 No problems, n (%)

28 (80.0)

 Slight problems, n (%)

6 (17.1)

 Moderate problems, n (%)

1 (2.86)

 Severe problems, n (%)

0

 Unable to wash/dress, n (%)

0

Usual activities

 No problems, n (%)

19 (54.3)

 Slight problems, n (%)

9 (25.7)

 Moderate problems, n (%)

6 (17.1)

 Severe problems, n (%)

0

 Unable to do, n (%)

1 (2.86)

Pain/discomfort

 No pain or discomfort, n (%)

11 (31.4)

 Slight pain or discomfort, n (%)

10 (28.6)

 Moderate pain or discomfort, n (%)

8 (22.9)

 Severe pain or discomfort, n (%)

5 (14.3)

 Extreme pain or discomfort, n (%)

1 (2.86)

Anxiety/depression

 Not anxious or depressed, n (%)

6 (17.1)

 Slightly anxious or depressed, n (%)

11 (31.4)

 Moderately anxious or depressed, n (%)

12 (34.3)

 Severely anxious or depressed, n (%)

4 (11.4)

 Extremely anxious or depressed, n (%)

2 (5.71)

Utility scorea

 Mean (± SD)

0.65 (± 0.29)

 Median

0.72

 IQR

0.37

 Minimum–maximum

-0.15–1.00

PROMIS® GH

 Number of estimable scores, n

35

Physical health score

 Mean (± SD)

43.6 (± 9.19)

 Median

44.9

 IQR

13.4

 Minimum–maximum

26.7–61.9

Mental health score

 Mean (± SD)

41.7 (± 11.5)

 Median

38.8

 IQR

17.0

 Minimum–maximum

25.1–67.7

Estimated EQ-5D utility score (from PROMIS® GH)

 Mean (± SD)

0.65 (± 0.11)

 Median

0.65

 IQR

0.14

 Minimum–maximum

0.42–0.84

Overall health

 Excellent, n (%)

3 (8.57)

 Very good, n (%)

5 (14.3)

 Good, n (%)

16 (45.7)

 Fair, n (%)

6 (17.1)

 Poor, n (%)

5 (14.3)

INF1-QOL

Value (N = 51)

Number of estimable scores, n

33

Total score

 Mean (± SD)

11.03 (± 6.02)

 Median

11.00

 IQR

7.00

 Minimum–maximum

1–26

  1. Abbreviations: HRQoL health-related quality of life, INF1-QOL Impact of NF1 on Quality of Life, IQR interquartile range, NF1 neurofibromatosis type 1, PROMIS® GH Patient-Reported Outcomes Measurement Information System® Global Health, SD standard deviation
  2. aResponses from EQ-5D-5L were cross-walked to EQ-5D-3L utility scores using the validated mapping function by van Hout et al. (based on the UK 3L value set) [25, 26]. A higher EQ-5D utility and PROMIS® GH score, and a lower INF1-QOL score, indicate better HRQoL