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Table 1 Patient and study characteristics

From: Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review

  Study characteristics Patient characteristics
Author (date) Country of research Sample size
n (male n)
Design Age in years Time since onset (O)/
Time since diagnosis (D)
ALSFRS Diagnostic
criteria
Onset
bulbar (%)
Bremer (2004)T0 [16] U.S.A 49 (29) Longitudinal 57.8 (13.0) 34.9 (13.2) moO 27.9 (6.3) El Escorial n.m
Chio (2004) [13] Italy 80 (49) Cross sectional 59.8 (12.6; 26–81) 2.1 (1.7; 1–7.8) yrO 26.6 (9.5; 3–38) El Escorial n.m.
Clarke (2001) [15] Ireland 26 (18) Cross sectional 63M (34–86) 31.5 (4–156)M moD 22.5M (11–36) El Escorial n.m
Dal Bello-Haas (2000) [47] U.S.A 60 (38) Cross sectional 56.2 (12.2) n.m n.m El Escorial n.m.
Ganzini (1999) [45] U.S.A. 100 (61) Cross sectional 54M (51.6–56.8) 2.8 (2.0–3.6)M yrD n.m n.m n.m
Gibbons (2013) [37] U.K. 147 (90) Cross sectional 61 (11; 35–81) n.m 22.3 (9.5; 4–48) ‘confirmed diagnosis’ n.m
Goldstein (2002) [38] U.K 31 (19) Cross sectional 64.0 (11.9) 15.9 (5.2) moD n.m El Escorial n.m
Ilse (2015) [10] Germany 49 (25) Cross sectional 63.8 (10.0) 35.1 (36.3) moO 32.6 (9.2) R El Escorial 33 %
Krampe (2008)T0 [27] Germany 31 (19) Longitudinal 60.3 (10.4; 32.9–79.7) 96.3 (70.5; 22.4–330.4) wkO 27.0 (6.6; 12–38) El Escorial 19 %
Lule (2008)T0 [28] Germany 39 (19) Longitudinal n.m 43.9 (37.5; 0–170) moD 19.9 (21.1; 0–39) El Escorial n.m
Matuz (2010) [36] Germany 27 (15) Cross sectional 55.3 (11.1; 35–73) 36 (4–129) moD 17.4 (9.8; 0–36) ‘by a neurologist’ 7 %
Matuz T0 (2015) [30] Germany 27 (15) Longitudinal 55.3 (11.1; 35–73) 43.2 (30.5; 4–129) moD 17.4 (9.8; 0–36) El Escorial 7 %
McCabe (2009) [19] Spain 120 (72) Cross sectional 63.2 (12.4) 5.7 (5.8)O yr n.m n.m n.m
Montel (2012) [46] France 49 (26) Cross sectional 63 (12) 45 (28) moO 28.2 (9.0)R El Escorial 22 %
Pagnini T0 (2015) [29] Italy USA 197 (115) Longitudinal a a 30.6(9.9)SA ‘self-declared’ n.m
Peric (2010) [40] Serbia 74 (45) Cross sectional 57 (11) 29 (27) moO 34 (8)R El Escorial n.m.
Pizzimenti (2013) [43] Italy 36 (22) Cross sectional 63.7 (10.9) 22 (14) moO 35.1 (8.7) El Escorial 22 %
Robbins (2001)T0 [31] U.S.A 60 (32) Longitudinal 58.5 (13.5; 27–83) n.m 28.1 (6.3; 12–39) El Escorial n.m
Simmons (2000) [14] U.S.A 96 (52) Cross sectional 57.8 (23–80) 31.8 (2 mo-10 year) moO 26.6 (9–39) ‘met the criteria’ n.m
Tramonti (2012) [42] Italy 40 (30) Cross sectional 59.1 (10.9; 34–84) n.m 20.8 (8.3; 7–36) n.m n.m
Vignola (2008)TD [41] Italy 29 (20) Cross sectional 63.6 (7.8; 44–78) 11.7 (23.7; 2–43) moO 33.1 (4.8; 22–39) El Escorial n.m
Winter (2010) [44] Germany 37 (21) Cross sectional 59.6 (11.0) 2.3 (1.9) yrO n.m El Escorial n.m
  1. Note. Numbers are presented as means (SD; range), unless stated otherwise
  2. Abbreviations: n.m not mentioned, M median instead of mean, yr year, mo months, wk weeks, ALSFRS Amyotrophic Lateral Sclerosis Functional Rating Scale, R ALSFRS-Revised, SA self-administered ALSFRS, T0 data from baseline measurement, TD data from diagnostic phase, O onset, D diagnosis
  3. a time since diagnosis and age were reported in categories