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
Back to article page

BMC Palliative Care

ISSN: 1472-684X

Contact us