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Table 1 Patient characteristics

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

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 (%)
 ALSa 31 (51)
 MNDb 23 (38)
 PLSc 7 (12)
Time since first symptom of disease, m year (std) 5,8 (7.2)
Pain, BPI-SFd, 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 (%), DN4e 12 (20)
Chronic pain before onset of MND, n (%) 22 (36)
Disease severity, ALSFRS-Rf, 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)
Drugsg, 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)
  1. aALS Amyotrohic Lateral Sclerosis with both upper and lower motor neuron signs and symptoms but not further classified into the specific El Escorial categories
  2. bMND Motor Neuron Disease with lower motor neuron signs and symptoms
  3. cPLS Primary Lateral Sclerosis with only upper motor neuron signs and symptoms
  4. 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
  5. eDN4 Doleur Neuropathique 4 questions – Swedish version is a screening measurement of neuropathic pain
  6. 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
  7. gDrugs, Riluzole, improves survival in people with ALS in about 3-6 months and might have a beneficial effect on neuropathic pain