Study Objective #1 - Examine the demographic and clinical characteristics of HNHC patients. Table 1 shows the demographic characteristics of HNHC patients enrolled in CCM programs in the safety-net based on the chart review (n = 60). Seventy percent of patients perceived their health as “fair” or “poor”. HNHC patients were predominantly people of color (83%), very low-income (i.e., had less than $1000 in monthly income) (75%), had less than a high school education (63%), unemployed (95%), and a majority of patients experienced chronic homelessness (63%) with 30% of those experiencing homelessness in the past 6 months.
Table 1
Characteristics of high-need, high-cost patients in complex care management programs in the safety-net compared to US adults (n = 60)
Characteristics
|
n (%)
|
US adults (%)
|
Age (mean years)
|
54 (sd = 10)
|
median = 371
|
Sex
|
|
|
Male
|
31 (52)
|
(49)2
|
Female
|
29 (48)
|
|
Race/ethnicity
|
|
|
American Indian/Native American /Alaska Native
|
3 (5)
|
|
Asian/Pacific Islander
|
4 (6)
|
(6)3
|
Black/African American/African
|
25 (42)
|
(13)4
|
Hispanic/Mexican/Mexican-American/Chicano/Latino/Spanish Heritage
|
16 (27)
|
(13)5
|
White/Caucasian
|
10 (17)
|
(77)6
|
Other
|
2 (3)
|
|
Education
|
|
|
Less than high school
|
18 (30)
|
(12)7
|
High school diploma / GED
|
20 (33)
|
(29)8
|
More than high school
|
22 (37)
|
(59)9
|
Housing
|
|
|
Apartment or house
|
39 (65)
|
|
Single Room Occupancy (SRO)/nightly hotel/shelter
|
9 (15)
|
|
Staying with friends or relatives
|
5 (8)
|
|
Other
|
7 (11)
|
|
Born outside of the US
|
18 (30)
|
(13)10
|
Income (monthly)
|
|
|
Less than $500
|
18 (30)
|
|
$501 - $1000
|
27 (45)
|
|
$1001 - $2000
|
9 (15)
|
|
$2001 - $3000
|
3 (5)
|
|
Don’t Know
|
3 (5)
|
|
Employed
|
3 (5)
|
(60)11
|
Language spoken at home
|
|
|
English only
|
41 (68)
|
(79)12
|
Insured
|
51 (85)
|
(89)13
|
Perceived health status
|
|
|
Excellent, very good, good
|
12 (22)
|
(82)14*
|
Fair, poor
|
42 (70)
|
(18)15*
|
Prefer not to state
|
5 (8)
|
|
1 US Census Bureau. 2018. "U.S. Census Bureau. Quick Facts U.S. Census Bureau. 2018."
2 Ibid.
3 Ibid.
4 Ibid.
5 Ibid.
6 Ibid.
7 Proctor, B.D., J.L. Semega, and M.A. Kollar. 2016. "Income and Poverty in the United States: 2015 " Pp. P60-256, edited by US Census Bureau: US Census Bureau, Ryan, C. L., and K. Bauman. 2016. "Education attainment in the United States: 2015 " Pp. P20-578, edited by US Census Bureau: US Census Bureau.
8 Proctor, B.D., J.L. Semega, and M.A. Kollar. 2016. "Income and Poverty in the United States: 2015 " Pp. P60-256, edited by US Census Bureau: US Census Bureau, Ryan, C. L., and K. Bauman. 2016. "Education attainment in the United States: 2015 " Pp. P20-578, edited by US Census Bureau: US Census Bureau.
9 Proctor, B.D., J.L. Semega, and M.A. Kollar. 2016. "Income and Poverty in the United States: 2015 " Pp. P60-256, edited by US Census Bureau: US Census Bureau, Ryan, C. L., and K. Bauman. 2016. "Education attainment in the United States: 2015 " Pp. P20-578, edited by US Census Bureau: US Census Bureau.
10 Proctor, B.D., J.L. Semega, and M.A. Kollar. 2016. "Income and Poverty in the United States: 2015 " Pp. P60-256, edited by US Census Bureau: US Census Bureau.
11 Ibid.
12 Ibid.
13 Ibid.
14 The National Center for Health Statistics. 2016. "Health, United States: With special feature on racial and ethnic health disparities." edited by The National Center for Health Statistics. Hyattsville, MD.
15 Ibid.
*Figures represent percentage of adults living in the state where the study was conducted.
|
The medical records review results indicate that the HNHC patients enrolled in CCM programs in the safety-net are extremely medically and socially compromised. They are very poor, unemployed, and very sick. To place the HNHC patient population in the larger U.S. context, our sample of HNHC patients were disproportionately low-income having reported a monthly income of less than $1,000, while the U.S. monthly median income is approximately $4,710 (Proctor, Semega and Kollar 2016). A majority of patients in CCM programs come from communities of color with 83% identifying as African American or Latino compared to 23% of the U.S. adult population (US Census Bureau 2018). Patients also have far lower educational attainment with 30% not having completed a high school education when compared to the U.S. population average of 12% (Ryan and Bauman 2016). HNHC patients in our study are prescribed more medications with 50% of patients being prescribed 16 or more medications compared to the U.S adult population wherein 11% are prescribed 5 or more medications (The National Center for Health Statistics 2016). HNHC patients in our study also reported lower perceived health status with 22% of our participants having reported good, very good, or excellent health while 82% of adults in California rated their health as good, very good, or excellent health (The National Center for Health Statistics 2016).
Table 2 summarizes HNHC patients’ diagnosed conditions and illustrates that more than half had hypertension (65%), over half had a depression diagnosis (58%) (the Elixhauser categorization includes post-schizophrenic depression, bipolar affective disorder, and persistent mood affective disorders), were diabetic (57%), and a third of patients had substance abuse disorder. Furthermore, the median was diagnosed with four conditions (range 1 to 9). We also found that patients were prescribed a mean of 16 medications (median = 16; range 4 to 30). During the first year that patients were enrolled in a CCM program, 61% were hospitalized and 87% visited the emergency department (ED). Of the 45 individuals with healthcare utilization data, patients were admitted to the hospital a mean of 2.3 times (median = 1; range 0 to 14) and visited an ED a mean of 6.5 times (median = 3; range 0 to 52) in the first year of CCM enrollment. The average number of days spent in the hospital was 8.9 days (SD = 13.0) and the average length of stay per hospitalization was 2.6 days (SD = 3.6). Acute care utilization data includes 45 of the 60 patients due to patients having not yet completed the first 12 months of enrollment in a CCM or with an unknown start date for enrollment in a CCM.
Table 2
Chronic diseases of patients in complex care management programs in the safety-net (n = 60)
Chronic Disease
|
n (%)
|
Hypertension
|
39 (65)
|
Depression
|
35 (58)
|
Diabetes
|
34 (57)
|
Congestive heart failure
|
25 (42)
|
Chronic pulmonary disease
|
23 (38)
|
Drug abuse
|
20 (33)
|
Renal failure
|
16 (27)
|
Obesity
|
13 (22)
|
Alcohol abuse
|
9 (15)
|
Cardiac arrhythmias
|
5 (8)
|
Deficiency anemia
|
5 (8)
|
Rheumatoid arthritis/collagen vascular diseases
|
4 (7)
|
Hypothyroidism
|
3 (5)
|
Liver disease
|
3 (5)
|
Peripheral vascular disorders
|
3 (5)
|
Note: these conditions are from the Elixhauser comorbidity list |
Table 3 illustrates the demographic profile of the patients who participated in the cognitive interviews (n = 20). Overall, 55% of respondents identified as male. Forty-five percent were in the age range of 50–59, 35% were in the age range of 60–69, 5% were in the age range of 70–79, and the rest were below the age of 49. Our population was Latinos (60%), African Americans (20%) and Whites (20%). Seventy-five percent were very low-income (i.e., making less than $1000 a month) and 55% of patients had a high school education or less.
Table 3
Characteristics of Contextual Health Assessment of Social Stability (CHAOSS) cognitive interview respondents (n = 20)
Characteristics
|
n
|
Sex
|
|
Male
|
11
|
Female
|
9
|
Language during Interview
|
|
English
|
10
|
Spanish
|
10
|
Age range (years)
|
|
20–49
|
3
|
50–59
|
9
|
60–79
|
8
|
Race/Ethnicity
|
|
Latino/a
|
12
|
White/Caucasian
|
4
|
Black/African-American
|
4
|
US Born
|
6
|
Born Outside of US
|
14
|
Income (monthly)
|
|
Less than $500
|
3
|
$500-$1000
|
12
|
$1001-$2000
|
4
|
More than $2000
|
1
|
Educational Attainment
|
|
Primary school
|
5
|
High school
|
6
|
Vocational or Technical school / Some college
|
4
|
College (undergraduate and graduate)
|
5
|
Income subsidy utilization
|
|
SSI
|
11
|
SSDI
|
3
|
None of the above
|
6
|
Insurance
|
|
Medicaid only
|
14
|
Medicaid and Medicare
|
5
|
Local healthcare access program
|
1
|
Relationship status
|
|
Married
|
3
|
Widowed
|
2
|
Divorced or Separated
|
5
|
Never married
|
8
|
Other
|
2
|
Study Objective #2 – cognitive interview pilot testing of CHAOSS. The CHAOSS questionnaire was designed to track medical and social experiences of HNHC patients enrolled in a safety-net CCM program. The questionnaire went over a patient’s health and health goals, a patient’s interactions with CCM staff including their doctor, nurse, and social worker as well as their social circumstances such as the availability of food, quality of their living conditions, and transportation needs. (We provide the CHAOSS tool in the Appendix.)
Below are examples of how we utilized the CDC’s guidelines and the four cognitive stages to examine the appropriateness of CHAOSS as a tool for HNHC patients seeking care in safety-net CCM.
Patient’s Health
We begin with an example based on a question that is commonly used in health surveys. On the questionnaire, patient-participants were asked, “Today, my health is…” (Question 3) to determine their perceived health status. The answer choices were Poor, Fair, Good, and Very good. After probing about their answer selection, patient-participants associated experiences of “bodily pain,” “fatigue,” “depression,” and “side effects from medication” to their current health status. A patient-participant described being of “good” health by stating, “my breathing is right, right now. You don’t hear me breathing. I don’t have anxiety. I’m not overthinking nothing.” Using CDC’s model for evaluating questions and response, the patient-participant’s answer was salient to the question. They described characteristics that make up their health in the current period (comprehension). The patient-participant also relied on memory to refer to time when they had difficulty breathing (retrieval), gauged whether they were having difficulty breathing at the current time or not (estimation/judgment) and provided an actual response (response). Other patient-participants also provided a similar thought process to determine an answer. In this case, we were able to determine the question was understood by the patient-participants.
The following are examples of when a possible “cognitive stage error” occurred when responding to CHAOSS in two areas: Patient health improvements, Patient self-management skills
Patient Health Improvements
Patient-participants were asked, “My health is improving” (Question 14) with the possible answers of “Yes, No, or Unsure.” Patient-participants who said that their health had improved described, “avoiding hospitalization,” “feeling good or better about their health,” managing their medical condition properly or showing improvement, “taking new medications,” sobriety, “feeling less fatigued,” and “having a better diet” were part of their thought process for determining an answer. In contrast, patient-participants whose health did improve described “not feeling well,” “feeling constant pain,” “not sleeping well,” or “unable to control blood pressure”.
In one of the interviews, a patient-participant said, “I don’t know. I’m getting tired of this. I just try to walk and eat right. Like the other day, I just take the opium and ate pea soup for lunch. If I eat, I feel better.” In this example, the patient-participant seemed to have trouble answering the question. But they could also have been irritated by the length of the cognitive interview, which led them to state, “I don’t know.” Despite describing some uncertainty, the patient-participant demonstrated that they understood the question by providing an instance when they felt better (comprehension). The patient-participant also recalled the instance when they said, “the other day” (retrieval), determined how that particular activity on that day affected their health (judgement/estimation), and concluded with an answer (response).
Patient Self-Management Skills
Another possible cognitive stage error was observed when a patient-participant was asked, “I know how to stay out of the hospital” (Question 13). The patient-participant explained that “Well...Obviously I’m a patient at the hospital. There isn’t anything for me to harm myself to come to the hospital for. For that question, I guess, there is no way for me not to be a patient at the hospital”. In this case, the patient-participant’s explanation was ambiguous. While they did not perceive any condition that could lead them to future hospitalizations, they also suggested that they were not able to avoid being hospitalized. In this case, the patient-participant’s response represents several cognitive errors. The patient-participant did not understand the question by providing an unexpected response (comprehension error) and had difficulty gauging their ability to self-manage (judgement/estimation error). During the interview, the patient-participant was asked a similar question, “how do you avoid being admitted in the hospital?” for clarification. However, they did not provide a more reliable answer. In this case, the questionnaire item requires revisions to improve how the question is presented to the patients.