Table 4 Associations between baseline (T1) characteristics and health status at 5 years (T2): the deceased persons were considered as part of the worsened cases: univariate analysis.

From: Health status of individuals with polyhandicap across a 5-year follow-up period

  

Global severity ~

Abilities severity ~

Comorbidities severity ~

Non-worsened

Worsened-deceased

p

Non-worsened

Worsened-deceased

p

Non-worsened

Worsened-deceased

p

N = 140

N = 464

N = 169

N = 465

N = 91

N = 523

N (%)

Med [IQR]

N (%)

Med [IQR]

N (%)

Med [IQR]

N (%)

Med [IQR]

N (%)

Med [IQR]

N (%)

Med [IQR]

Sex

Boys/Men

75 (53.6)

255 (55.0)

0.773

89 (52.7)

256 (55.1)

0.593

47 (51.6)

289 (55.3)

0.523

Girls/Women

65 (46.4)

209 (45.0)

 

80 (47.3)

209 (44.9)

 

44 (48.4)

234 (44.7)

 

Age 2015-16

 

30 [17–45]

24 [14–46]

0.130

27 [17–43]

22 [13–47]

0.350

26 [16–45]

25 [14–45]

0.318

Aetiology lesion time

Antenatal

43 (37.4)

151 (54.3)

0.002

60 (41.7)

149 (54.0)

0.017

27 (40.3)

174 (51.9)

0.082

Others

72 (62.6)

127 (45.7)

 

84 (58.3)

127 (46.0)

 

40 (59.7)

161 (48.1)

 

Aetiology nature

Progressive

14 (11.4)

66 (21.4)

0.016

23 (15.4)

63 (20.3)

0.209

10 (13.7)

75 (20.4)

0.186

Others

109 (88.6)

243 (78.6)

 

126 (84.6)

247 (79.7)

 

63 (86.3)

293 (79.6)

 

Care management

Spec. rehab. centres

66 (47.1)

284 (61.5)

0.003

62 (36.7)

290 (62.6)

< 0.001

50 (54.9)

301 (57.8)

0.615

modalities

Others

74 (52.9)

178 (38.5)

 

107 (63.3)

173 (37.4)

 

41 (45.1)

220 (42.2)

 

Mobility (GMFCS)

III–IV

39 (27.9)

146 (31.9)

0.368

48 (28.4)

152 (33.2)

0.254

30 (33.0)

161 (31.1)

0.729

V

101 (72.1)

312 (68.1)

 

121 (71.6)

306 (66.8)

 

61 (67.0)

356 (68.9)

 

Functional independency

(FIM score)

20 [18–22]

20 [18–25]

0.239

20 [18–22]

20 [18–25]

0.624

20 [18–25]

20 [18–24]

0.770

Profound intellectual

Yes

130 (92.9)

401 (86.8)

0.051

155 (92.3)

394 (85.1)

0.018

78 (85.7)

455 (87.3)

0.671

Impairment

No

10 (7.1)

61 (13.2)

 

13 (7.7)

69 (14.9)

 

13 (14.3)

66 (12.7)

 

Behavioural disorders

Yes

114 (81.4)

360 (79.3)

0.583

127 (75.6)

88 (19.3)

0.166

79 (85.0)

399 (77.6)

0.029

No

26 (18.6)

94 (20.7)

 

41 (24.42)

367 (80.7)

 

11 (12.2)

115 (22.4)

 

Number of devices

 

0 [0–1]

0 [0–1]

0.079

0 [0–1]

0 [0–1]

0.001

0 [0–1]

0 [0–1]

0.624

Number of medications

 

7 [5–9]

8 [6–10]

0.065

7 [5–8]

8 [6–10]

< 0.001

8 [5–10]

8 [5–10]

0.925

  1. Bold values; p < 0.05.
  2. T1: 2015-16 evaluation ; T2: 2020-21 evaluation ; p: p-value ; N (%): number (percents); Med [IQR]: median [interquartile range].
  3. ~ from the PSS (Polyhandicap Severity Scale) scores; T2 score minus T1 score = D, if D < 0 non-worsened, if D > = 0 or deceased worsened.
  4. Spec. rehab. centres: specialized rehabilitation centres.
  5. GMFCS: Gross Motor Function Scale.
  6. FIM: Functional Independency Measure.
  7. Profound intellectual Impairment: Intelligence quotient < 25 or non-evaluable.
  8. Recurrent pulmonary infections: >=5 events/year.
  9. Drug resistant epilepsy: ≥4 seizures/month.
  10. Behavioural disorders: intermittent screaming and/or agitation and/or stereotypies and/or intermittent crying and/or self-aggression and/or hetero-aggression.
  11. Devices: invasive mechanical ventilation, noninvasive mechanical ventilation, tracheostomy, nasogastric tube, gastrostomy, permanent urinary probe, cerebrospinal fluid derivation, and central venous catheter.
  12. Medications: laxatives, anti-convulsants, antalgics, psychotropics, antispastics, antidystonics, antibiotics, osteoporosis prevention, iron supplementation.
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