Understanding the needs of people with ALS: a national survey of patients and caregivers

Figures & data

Table 1 People with ALS (PALS) and caregiver demographics.

	PALS		Caregivers
	Total responding (n)	n (%)	Total responding (n)	n (%)
Age (years)	620		383
<45		38 (6)		82 (21)
45–54		105 (17)		80 (21)
55–64		247 (40)		111 (29)
65–74		174 (28)		86 (22)
75 and older		56 (9)		24 (6)
Sex	620		383
Female		260 (42)		301 (79)
Male		360 (58)		82 (21)
Race	606		364
Black or African American		15 (2)		8 (2)
White		563 (93)		341 (94)
Other		28 (5)		15 (4)
Ethnicity	620		383
Hispanic or Latino		22 (4)		20 (5)
Not Hispanic or Latino		598(96)		363 (95)
Employment	619		383
Full-time		62 (10)		138 (36)
Part-time		23 (4)		46 (12)
On disability		241 (39)		4 (1)
Retired		253 (41)		127 (33)
Unemployed		17 (3)		32 (8)
Other		23 (4)		36 (9)
Insurance^a	620		NR	NR
Affordable Care Act		13 (2)
Medicaid		34 (5)
Medicare		414 (67)
Private		304 (49)
Veterans		101 (16)
Other		80 (13)
Unsure		5 (1)
Living Situation	880		632
Patient lives independently		251 (29)		70 (11)
Patient lives at home with a separate caregiver		256 (29)		79 (12)
Patient and caregiver share a home		301 (34)		389 (62)
In a facility		17 (2)		19 (3)
Other		55 (6)		75 (12)

*Not all respondents completed the every question in the survey, and therefore the total responding to each item is shown in the above table.

^a Only asked of PALS; Respondents could select more than one type.

NR: not reported, information was not collected.

Figure 1 Comparison of perceived symptoms by people with ALS (PALS), current caregivers (C-LPALS), and prior caregivers (C-DPALS) over the last 2 weeks. *C-DPALS were asked to report perceived symptoms over the last 2 weeks of the patient’s life

Table 2 Percent of people with ALS (PALS) with given symptom in the preceding 2 weeks as reported by PALS and current caregivers (C-LPALS).

Symptom	PALS (%) n = 764	C-LPALS (%) n = 378	p-Value
Weakness	91	91	0.899
Fatigue	76	87	<0.001
Speech problems	52	62	0.002
Shortness of breath	45	59	<0.001
Pain	40	44	0.162
Difficulty sleeping	39	49	0.001
Depression	29	46	<0.001
Cognitive changes	19	26	0.014

Figure 2 Self-reporting of stress level over the last 2 weeks from people with ALS (PALS) and caregivers (C-LPALS and C-DPALS).