Table 1.
PALS participant demographic characteristics of the intervention and control group
| Variables | Total sample N = 136 | Intervention group n = 64 | Control group n = 72 | P value |
|---|---|---|---|---|
| Age, mean (SD)*, a | 40.18 (11.86) | 42.81 (13.17) | 37.85 (10.10) | 0.01 b |
| Sex, n (%) c | 0.82 | |||
| Male | 7 (5.15) | 3 (4.69) | 4 (5.56) | |
| Female | 129 (94.85) | 61 (95.31) | 68 (94.44) | |
| Race, n (%) d | 0.21 | |||
| Black | 92 (67.65) | 48 (75.00) | 44 (61.11) | |
| White | 19 (13.97) | 8 (12.50) | 11 (15.28) | |
| Other | 10 (7.35) | 5 (7.81) | 5 (6.94) | |
| Prefer not to answer | 6 (4.41) | 0 | 6 (8.33) | |
| Asian | 5 (3.68) | 2 (3.13) | 3 (4.17) | |
| Native American | 2 (1.47) | 1 (1.56) | 1 (1.39) | |
| More than one race | 2 (1.47) | 0 | 2 (2.78) | |
| Ethnicity, n (%) e | 0.22 | |||
| Hispanic | 18 (13.24) | 6 (9.38) | 12 (16.67) | |
| Non‐Hispanic | 115 (84.56) | 56 (87.50) | 59 (81.94) | |
| Prefer not to answer | 3 (2.21) | 2 (3.13) | 1 (1.39) | |
| Education, n (%) f | 0.37 | |||
| 5th‐8th grade | 0 | 0 | 0 | |
| 9th‐12th grade, (no diploma or GED) | 7 (5.15) | 4 (6.25) | 3 (4.17) | |
| 12th grade (received diploma or GED) | 18 (13.24) | 6 (9.38) | 12 (16.67) | |
| Some college | 38 (27.94) | 16 (25.00) | 22 (30.56) | |
| Associate degree | 15 (11.03) | 9 (14.06) | 6 (8.33) | |
| Bachelor's degree | 38 (27.94) | 16 (25.00) | 22 (30.56) | |
| Master's degree | 19 (13.97) | 12 (18.75) | 7 (9.72) | |
| Doctorate degree | 1 (0.74) | 1 (1.56) | 0 | |
| Employment, n (%) g | 0.36 | |||
| I work part‐time | 20 (14.71) | 12 (18.75) | 8 (11.11) | |
| I work full‐time | 54 (39.71) | 26 (40.63) | 28 (38.89) | |
| I do not have a job | 62 (45.59) | 26 (40.63) | 36 (50.00) | |
| Number of people in household, n (%) h | 0.15 | |||
| 1 | 26 (19.12) | 15 (23.44) | 11 (15.28) | |
| 2 | 37 (27.21) | 19 (29.69) | 18 (25.00) | |
| 3 | 32 (23.53) | 19 (29.69) | 13 (18.06) | |
| 4 | 21 (15.44) | 6 (9.38) | 15 (20.83) | |
| 5 | 11 (8.09) | 4 (6.25) | 7 (9.72) | |
| 6 | 4 (2.94) | 1 (1.56) | 3 (4.17) | |
| 7 | 3 (2.21) | 0 | 3 (4.17) | |
| 8 | 1 (0.74) | 0 | 1 (1.39) | |
| 9 | 1 (0.74) | 0 | 1 (1.39) | |
| Household income, n (%) i | 0.40 | |||
| $29,999 or less | 47 (34.56) | 20 (31.25) | 27 (37.50) | |
| $30,000‐$49,999 | 34 (25.00) | 19 (29.69) | 15 (20.83) | |
| $50,000‐$74,999 | 25 (18.38) | 13 (20.31) | 12 (16.67) | |
| $75,000‐$99,999 | 10 (7.35) | 3 (4.69) | 7 (9.72) | |
| $100,000‐$149,999 | 12 (8.82) | 4 (6.25) | 8 (11.11) | |
| $150,000‐$199,999 | 5 (3.68) | 4 (6.25) | 1 (1.39) | |
| $200,000 or more | 3 (2.21) | 1 (1.56) | 2 (2.78) | |
| Past‐year flares, n (%) j | 0.40 | |||
| 0‐3 times | 77 (56.62) | 39 (60.94) | 38 (52.78) | |
| 4‐7 times | 34 (25.00) | 17 (26.56) | 17 (23.61) | |
| 8‐11 times | 11 (8.09) | 4 (6.25) | 7 (9.72) | |
| 12 or more times | 14 (10.29) | 4 (6.25) | 10 (13.89) | |
| Past‐year doctor visits, n (%) k | 0.34 | |||
| 0‐3 times | 70 (51.47) | 32 (50.00) | 38 (52.78) | |
| 4‐7 times | 52 (38.24) | 28 (43.75) | 24 (33.33) | |
| 8‐11 times | 9 (6.62) | 2 (3.13) | 7 (9.72) | |
| 12 or more times | 5 (3.68) | 2 (3.13) | 3 (4.17) | |
| Past‐year ED visits, n (%) l | 0.25 | |||
| 0‐3 times | 123 (90.44) | 61 (95.31) | 62 (86.11) | |
| 4‐7 times | 10 (7.35) | 2 (3.13) | 8 (11.11) | |
| 8‐11 times | 1 (0.74) | 0 | 1 (1.39) | |
| 12 or more times | 2 (1.47) | 1 (1.56) | 1 (1.39) | |
| Past‐year hospital admissions, n (%) m | 0.13 | |||
| 0‐3 times | 130 (95.59) | 63 (98.44) | 67 (93.06) | |
| 4‐7 times | 4 (2.94) | 0 | 4 (5.56) | |
| 8‐11 times | 1 (0.74) | 0 | 1 (1.39) | |
| 12 or more times | 1 (0.74) | 1 (1.56) | 0 | |
| Length of lupus diagnosis, mean (SD)*, n | 18,259.35 (3078.42) | 17,707.81 (3525.06) | 18,749.61 (2544.64) | 0.05 b |
Abbreviations: ED, emergency department; GED, general education development; PALS, Patient Advocates for Lupus Studies.
Participants were asked, “How old are you?” with numeric answer choices between 18 and 100. We used age as a continuous variable.
Statistically significant at P ≤ 0.05.
Participants were asked, “What is your gender?” with answer choices including “male,” “female,” “write in option,” and “I prefer not to answer.” We created a dummy variable for sex in which one represented a participant who reported identifying as “male” and zero represented a participant who reported identifying as “female.”
Participants were asked, “Which of the following best describe you? Select all that apply.” Answer choices included “Black or African American,” “White or Caucasian,” “Asian,” “American Indian/Alaska Native,” “write‐in,” “I prefer not to answer,” and “more than one race.” We combined participants who reported “Asian,” “American Indian/Alaska Native,” and “more than one race” into “other” because of low numbers across these categories. We created a dummy variable for each race in which one represented a participant who reported being that respective race and zero represented a participant who did not. We used the most prominent category “Black or African American,” as the reference.
Participants were asked, “Do you identify as Hispanic or Latino?” with answer choices of “yes,” “no,” and “I prefer not to answer.” We created a dummy variable for gender in which one represented a participant who reported “yes” and zero represented a participant who reported “no.”
Participants were asked, “What is the highest grade level you have reached?” with answer choices of “5th‐8th grade,” “9th‐12th grade,” “no diploma or GED,” “12th grade, received diploma or GED,” “some college,” “associate degree,” “bachelor's degree,” “master's degree,” and “doctorate degree.” Because of low numbers across categories, we created a dummy variable for sex using the median as the cutoff, so that one represented a participant who reported having an “associate degree” or higher and zero represented a participant who reported “some college” or lower.
Participants were asked, “How would you describe your current job or work status?” with answer choices of “I work part‐time,” “I work full‐time,” and “I do not have a job.” Because of low representation in the part‐time category, we combined respondents who reported working and created a dummy variable for employment in which one represented a participant who reported either part‐time or full‐time work and zero represented a participant who reported being unemployed.
Participants were asked, “How many people are in your household? Your household is made of yourself, your husband, wife, or partner, your children, and any other family members living with you.” Answer choices were 1‐10. Because of low counts among the higher categories, we created a dummy variable for number of people in the household in which one represented a participant who reported more than three people and zero represented participants who reported one to three people.
3Participants were asked, “If you combined how much money everyone in your household made in 2018, how much would that be?” with answer choices of “under $29,999,” “$30,000‐$49,999,” “$50,000‐$74,999,” “$75,000‐$99,999,” “$100,000‐$149,999,” “$150,000‐$199,999,” and “$200,000 or more.” Because of low representation in the higher income categories, we created a dummy variable for income using the median as the cutoff, so that one represented a participant who reported an income of “$50,000‐$74,999,” or higher and zero represented a participant who reported “$30,000‐$49,999,” or lower.
Participants were asked, “In the past year, how many times have you had a lupus flare?” with answer choices of “0‐3 times,” “4‐7 times,” “8‐11 times,” and “12 or more times.” Because of low counts among the higher categories, we created a dummy variable for number of past‐year flares in which one represented a participant who reported more than three times in the past year and zero represented participants who reported “0‐3 times.”
In the past year, “How many times have you seen a doctor about your lupus or for a lupus flare up?” with answer choices of “0‐3 times,” “4‐7 times,” “8‐11 times,” and “12 or more times.” Because of low counts among the higher categories, we created a dummy variable for number of past‐year doctor visits in which one represented a participant who reported more than three times in the past year and zero represented participants who reported “0‐3 times.”
Participants were asked, “In the past year, how many times have you been to the ER due to your lupus or for a lupus flare up?” with answer choices of “0‐3 times,” “4‐7 times,” “8‐11 times,” and “12 or more times.” We removed this covariate from analyses because only 13 participants reported over three ER visits.
Participants were asked, “In the past year, how many times have you been admitted to the hospital for your lupus or for a lupus flare up?” with answer choices of “0‐3 times,” “4‐7 times,” “8‐11 times,” and “12 or more times.” We removed this covariate from analyses because only 15 participants reported over three hospital visits.
Participants were asked, “When were you diagnosed with lupus by a healthcare provider? Please provide the month and year (format MM/DD/YYYY).” We used the %td format in Stata, which interprets each date as the number of days since January 1, 1960; therefore, more recently diagnosed participants had a higher number than participants who were diagnosed longer ago.
P values were derived from chi‐square tests except for age and length of lupus diagnosis, which were derived from two‐group t‐test.