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

BMC Palliative Care

Table 1 Patient characteristics

Patients characteristics, n	All patients, 61
Gender, male/female n (%)	39/22 (64/36)
Age, all patients, m (SD)	61.9 (12.3)
Family situation, n (%)
Married/cohabitant	35 (57)
Partner and children	11 (18)
Single parent	3 (5)
Single	12 (20)
Education, n (%)
Elementary school	15 (25)
High school	24 (39)
University	22 (36)
Occupational status, n, (%)
Working full-time	6 (10)
Working part-time	5 (8)
Sickness benefit fulltime	17 (28)
Retired	31 (51)
Unemployed	1 (2)
Other	1 (2)
Diagnosis, n (%)
ALS^a	31 (51)
MND^b	23 (38)
PLS^c	7 (12)
Time since first symptom of disease, m year (std)	5,8 (7.2)
Pain, BPI-SF^d, n = 55
Pain, n = yes (%)	41 (74)
Pain during past 24 h, n = yes (%)	39 (71)
Worst level of pain, md (IQR)	5.0 (4.5)
PSI, n = 41, m (std)	3,8 (2,4)
Neuropathic pain, n (%), DN4^e	12 (20)
Chronic pain before onset of MND, n (%)	22 (36)
Disease severity, ALSFRS-R^f, md (Q₁-Q₃)
The bulbar function	10 (7,5-12)
The fine motor function	8 (4-10)
The gross motor function	7 (5-9)
The respiratory function	12 (10-12)
Drugs^g, n (%)
Analgetics	6 (10)
Antidepressants	17 (28)
Antiepileptics	2 (3)
Anxiolytics	9 (15)
Hypnotics	16 (26)
NSAID	8 (13)
Opioids	7 (12)
Spasmolytics	6 (10)
Triptans	2 (3)
Riluzole	55 (90)
Nothing	2 (3)

^aALS Amyotrohic Lateral Sclerosis with both upper and lower motor neuron signs and symptoms but not further classified into the specific El Escorial categories
^bMND Motor Neuron Disease with lower motor neuron signs and symptoms
^cPLS Primary Lateral Sclerosis with only upper motor neuron signs and symptoms
^dBPI-SF Brief Pain Inventory Short Form is a self-rating questionnaire about pain. Pain intensity for worst, least, average and current pain is graded from 0 (no pain) to 10 (pain as bad that you can imagine), PSI Pain Severity Index is the average score of worst, average and pain perceived at the time of the interview. No/mild PSI are considered between score 0-3, moderate PSI between scores 4-6 and severe PSI 7-10
^eDN4 Doleur Neuropathique 4 questions – Swedish version is a screening measurement of neuropathic pain
^fALSFRS-R Amyotrophic Lateral Sclerosis Functional Rating Scale Revised version is a 12-item scale of disease severity of Amyotrophic lateral sclerosis. ALSFRS-R assesses the level of function in the four domains of bulbar function, fine motor function, ross motor function and respiratory function. Each item is rated from 0 (worst) to 4 (best), corresponding to a total score of maximum 48
^gDrugs, Riluzole, improves survival in people with ALS in about 3-6 months and might have a beneficial effect on neuropathic pain

ISSN: 1472-684X