Skip to main content

Table 3 Individual quality of life (IQOL): frequency of nominations among those with pain/without pain, level of satisfaction with IQOL among those with/without pain, level of pain severity and disease severity

From: Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases

Areasa Frequency of nominations: participants with/without painb
n (%)
Satisfaction with IQOL: participants with/without painc, median (min-max) Pain severity Indexd Mean (SD) Bulbar functione, median (min-max) Fine motor functionf, median (min-max) Gross motor functiong, median (min-max) Respiratory functionh, median (min-max)
Social relations 35 (85)/12 (86) 6 (2-7)/6 (3-7) 2.8 (2.6) 10 (0-12) 8 (0-12) 7.5 (0-12) 12 (1-12)
Activities for amusement and relaxations 23 (56)/4 (28) 5 (1-7)/3.8 (1-7) 3.1 (2.6) 10 (0-12) 8 (0-11) 7 (0-12) 12 (1-12)
Being in the outdoor environment 12 (29)/7 (50) 5.5 (3-7)/5 (1-6) 1.6 (1.8) 10 (0-12) 8 (1-12) 8 (0-12) 12 (4-12)
Being independent 9 (22)/4 (28) 4 (1-6)/4.5 (1-6) 3.0 (2.8) 11 (3-12) 8 (1-11) 7 (2-12) 11 (4-12)
Being able to work 9 (22)/2 (14) 4 (1-6)/5.5 (5-6) 3.8 (2.8) 10 (4-12) 8 (1-12) 8 (5-12) 11 (4-12)
Being physically active 9 (22)/2 (14) 4 (1-7)/2 (1-3) 3.1 (2.9) 10 (3-12) 9 (1-12) 7 (0-12) 12 (5-12)
Acess to support and aids 8 (20)/2 (14) 6 (2-7)/6.5 (6-7) 3.6 (2.3) 10.5 (3-12) 7.5 (1-10) 5 (1-12) 12 (1-12)
Get along with daily inconveniences 6 (15)/3 (21) 3.5 (1-6)/3 (2-6) 2.7 (2.4) 8 (0-12) 7.5 (0-12) 7 (0-12) 10 (2-12)
Being in good health 3 (7)/4 (28) 6 (2-6)/5.5 (4-6) 2.3 (2.4) 9 (3-12) 8 (0-12) 5 (1-12) 11 (8-12)
A safe and comfortable home environment 6 (15)/ 0 6 (4-7) 4.2 (2.1) 10 (3-12) 6 (0-12) 8 (0-10) 12 (1-12)
The cottage 4 (10)/2 (14) 6 (5-7)/4 (1-7) 3.1 (2.8) 9.5 (3-12) 10 (0-12) 7.5 (2-10) 11.5 (5-12)
Enjoying good food and drinks 3 (7)/2 (14) 6 (4-6)/6.5 (6-7) 1.6 (1.6) 8 (3-12) 8 (1-11) 8 (0-12) 12 (4-12)
Being able to travel 4 (10)/1 (7) 6 (1-7)/5 (N/a) 4.3 (3.4) 12 (10-12) 10 (9-10) 8 (2-9) 12 (8-12)
Domestic care and family responsibilities 1 (2)/2 (14) 4 (N/a)/3.5 (3-4) 0.9 (1.6) 8 (7-10) 10 (5-12) 11 (5-12) 12 (10-12)
A pet 2 (5)/0 6.5 (6-7) 8.4 (0.9) 12 (11-12) 7 (4-7) 8 (7-9) 12 (11-12)
Hope for the future 2 (5)/0 3.5 (1-6) 2.6 (0.5) 11.5 (11-12) 7.5 (7-8) 3.5 (1-6) 8 (4-12)
Physical contact 1 (2)/2 (14) 4 (N/a)/1.5 (1-2) 2.4 (2.1) 8 (6-12) 3 (0-4) 4 (1-6) 11 (1-11)
Having a philosophy of life 1 (2) /0 5.5 (N/a) 1.3 (N/a) 8.0 (N/a) 6.0 (N/a) 8.0 (N/a) 12.0 (N/a)
Being alone 1 (2) /0 5 (N/a) 4.7 (N/a) 8.0 (N/a) 3.0 (N/a) 7.0 (N/a) 6.0 (N/a)
  1. a Areas nominated as important for individual quality of life (IQOL).  b participants with/without pain nominating the area. c How satisfied participants with pain were (1 – 7), where 1 indicate “as bad as could possibly be” and 7 “as good as could possibly be”. d How satisfied participants without pain were (1 – 7), where 1 indicate “as bad as could possibly be” and 7 “as good as could possibly be”. e Pain Severity Index (PSI) = average of ratings of worst, average and current pain during the past 24 hours. f Bulbar function, g fine motor function, h gross motor function and i respiratory function as subscales of the Amyotrophic Lateral Sclerosis Rating Scale - Revised version (ALSFRSR). Scores ranging from 0-12 on each subscale, where lower scores indicate worse function