Skip to main content

Table 3 HRQoL and work productivity outcomes for eligible caregivers

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

EQ-5D-5La

(N = 9)

Number of responses, n

8

Mobility

 No problems, n (%)

5 (62.5)

 Slight problems, n (%)

2 (25.0)

 Moderate problems, n (%)

1 (12.5)

 Severe problems, n (%)

0

 Unable to walk about, n (%)

0

Self-care

 No problems, n (%)

7 (87.5)

 Slight problems, n (%)

1 (12.5)

 Moderate problems, n (%)

0

 Severe problems, n (%)

0

 Unable to wash/dress, n (%)

0

Usual activities

 No problems, n (%)

5 (62.5)

 Slight problems, n (%)

2 (25.0)

 Moderate problems, n (%)

0

 Severe problems, n (%)

0

 Unable to do, n (%)

1 (12.5)

Pain/discomfort

 No pain or discomfort, n (%)

3 (37.5)

 Slight pain or discomfort, n (%)

1 (12.5)

 Moderate pain or discomfort, n (%)

4 (50.0)

 Severe pain or discomfort, n (%)

0

 Extreme pain or discomfort, n (%)

0

Anxiety/depression

 Not anxious or depressed, n (%)

4 (50.0)

 Slightly anxious or depressed, n (%)

2 (25.0)

 Moderately anxious or depressed, n (%)

1 (12.5)

 Severely anxious or depressed, n (%)

1 (12.5)

 Extremely anxious or depressed, n (%)

0

Utility scorea

 Mean (± SD)

0.72 (± 0.24)

 Median

0.74

 IQR

0.28

 Minimum–maximum

0.31–1.00

CarerQol

Value

 Number of responses, n

8

Utility score

 Mean (± SD)

69.3 (± 13.9)

 Median

66.3

 IQR

22.1

 Minimum–maximum

51.8–91.4

Happiness score

 Mean (± SD)

5.63 (± 1.77)

 Median

6.50

 IQR

3.00

 Minimum–maximum

3.00–7.00

WPAI:CG

Value (N = 9)

Absenteeism

 Number of estimable scores, n

6

 Mean (± SD), %

24.5 (± 37.9)

 Median, %

13.5

 IQR, %

20.0

 Minimum–maximum, %

0.00–100

Presenteeism

 Number of estimable scores, n

5

 Mean (± SD), %

40.0 (± 39.4)

 Median, %

40.0

 IQR, %

40.0

 Minimum–maximum, %

0.00–100

Productivity loss

 Number of estimable scores, n

5

 Mean (± SD), %

42.9 (± 40.1)

 Median, %

46.2

 IQR, %

48.3

 Minimum–maximum, %

0.00–100

Regular activity productivity loss

 Number of estimable scores, n

8

 Mean (± SD), %

36.3 (± 31.6)

 Median, %

30.0

 IQR, %

35.0

 Minimum–maximum, %

0.00–100

  1. Abbreviations: CarerQol Care-Related Quality of Life, HRQoL health-related quality of life, IQR interquartile range, NF1 neurofibromatosis type 1, PN plexiform neurofibroma(s), SD standard deviation, WPAI:CG Work Productivity and Activity Impairment questionnaire, as adapted for caregiving
  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]. COVID-19 refers to the coronavirus pandemic. A higher EQ-5D utility and CarerQol utility score indicate better HRQoL. A higher percentage score in WPAI:CG represents a greater impairment to work productivity