Table 2.

Self reported socio-demographic and clinical characteristics of the focus group, cognitive interview, and online samples.

Variable		Frequency (%2)
Focus Group Sample	N = 56
Mean Age	52 years
Gender	Male	28 (50)
Illness/Disease	Alzheimer’s disease	8 (14)
	Amyotrophic Lateral Sclerosis	8 (14)
	Epilepsy	8 (14)
	Parkinson’s disease	8 (14)
	Stroke	8 (14)
	Multiple sclerosis	16 (28)
Cognitive Interview Sample	Total N = 17
Mean Age	55 years
Gender	Male	7 (41)
Ethnicity	Hispanic/Latino	0 (0)
Race	European-American	16 (94)
	Black/African-American	1 (6)
	Native American, Asian-American, or Pacific Islander	0 (0)
Illness/Disease	Epilepsy	4 (23)
	Amyotrophic Lateral Sclerosis	4 (23)
	Multiple sclerosis	4 (23)
	Parkinson’s disease	4 (23)
	Stroke	1 (6)
Psychometric Sample	Total N = 511
Mean Age	56 years
Gender	Male	271 (53)
Ethnicity	Hispanic/Latino	27 (5)
Race1	European-American	486 (95)
	Black/African-American	15 (3)
	Native American, Asian-American, or Pacific Islander	29 (6)
Illness/Disease1	Stroke	209 (38)
	Multiple Sclerosis	84 (15)
	Parkinson’s Disease	59 (11)
	Epilepsy	183 (33)
	Amyotrophic Lateral Sclerosis	18 (3)
Psychological Distress	Not anxious or depressed	263 (52)
	Moderately anxious or depressed	215 (42)
	Extremely anxious or depressed	30 (6)
Performance Status	Normal activity, without symptoms	167 (33)
	Some symptoms, do not require bed rest during day	246 (48)
	Bed rest for less than 50% of day	80 (16)
	Bed rest for more than 50% of day	16 (3)
	Unable to get out of bed	2 (0.4)
Pain	No pain or discomfort	162 (32)
	Moderate pain or discomfort	287 (57)
	Extreme pain or discomfort	60 (12)

¹Participants endorsed multiple categories

²Percentages may not add up to 100 due to rounding.