Exploring the Attitude of Patients with HIV About Using Telehealth for HIV Care

Abstract

Telehealth could address many of the factors identified as barriers for retention in HIV care. In this study, we explore people with HIV (PWH)'s attitudes about using telemedicine for HIV care instead of face-to-face clinic visits. We administered a one-time survey to PWH presenting to an outpatient HIV center in Houston, Texas, from February to June 2018. The survey items were used to assess PWH's attitudes toward and concerns for telehealth and explanatory variables; 371 participants completed the survey; median age was 51, 36% and were female, and 63% was African American. Overall 57% of respondents were more likely to use telehealth for their HIV care if available, as compared with one-on-one in-person care, and 37% would use telehealth frequently or always as an alternative to clinic visits. Participants reported many benefits, including ability to fit better their schedule, decreasing travel time, and privacy but expressed concerns about the ability to effective communication and examination and the safety of personal information. Factors associated with likelihood of using telehealth include personal factors (US-born, men who have sex with men, higher educational attainment, higher HIV-related stigma perception), HIV-related factors (long-standing HIV), and structural factors (having difficulty attending clinic visits, not knowing about or not having the necessary technology). There was no association between participants with uncontrolled HIV, medication adherence, and likelihood of using telehealth. Telehealth programs for PWH can improve retention in care. Availability and confidence using various telehealth technologies need to be addressed to increase acceptability and usage of telehealth among PWH.

Introduction

When taken as prescribed, antiretroviral therapy (ART) can help people with HIV (PWH) live long, healthy lives and eliminate the risk of sexually transmitting HIV to a partner.^1,2 Yet, 80% of annual new infections are transmitted by those with HIV who are not receiving HIV care and treatment. Developing new solutions to enhance connections to and retention in HIV care are critical to curbing the HIV epidemic in the United States.³

Telehealth is well-positioned to address many of the factors identified as barriers for retention in HIV care.^4,5 PWH who are not retained in care report more transportation-related challenges such as transportation costs, unreliable public transportation, and travel distance, as compared with PWH who are retained in care.^6,7 Similarly, longer travel time to HIV specialty clinics has been associated with decreased use of these clinics.⁸ PWH who are out of care often cite competing stressful life events like hunger, homelessness, or violence as barriers to attending clinic visits and managing their HIV infection.⁹ In addition, stigma and fear of HIV status disclosure hinder PWH from attending HIV clinic visits.^6,10

Various telehealth interventions have been used to provide online based sexual health outreach,¹¹ to promote HIV testing and to address specific interventions among PWH, such as smoking cessation, or treatment of depression.^12,13 Most of these studies have shown promising results and high rates of patient satisfaction.^12

–17 Fewer studies have evaluated telehealth for chronic direct care of PWH. Research indicates that telemedicine could be an acceptable, safe, feasible, cost-effective, and effective alternative to in-clinic visits to manage HIV.¹⁸ Patients cite advantages, such as convenience, comfort, fewer transportation requirements, and even better health outcomes.¹⁹ For example, a retrospective study at a correctional facility compared the efficacy of HIV subspecialty management through telemedicine with that of an on-site correctional primary care physician. The mean CD4 count and the proportion of subjects who achieved virologic suppression were significantly higher when managed by a multidisciplinary team of subspecialists through telemedicine clinics.²⁰ Alternative encounter forms to the face-to-face visit have also been explored. One study compared patients who had one in-person visit supplemented with electronic encounter (e-mail only; e-mail and telephone) with those with more than two in-person visits and did not find significant differences in HIV viral load suppression.²¹

Patients have expressed multiple concerns about telehealth, however, including privacy,¹⁷ safety of their personal information, confidentiality using the internet, possible distraction at home, and lack of resources needed to conduct live video calls at home (i.e., no computer, tablet, smart phone, or internet access).²² These concerns suggest the need for continued research to ensure that telehealth services are acceptable to patients. Thus, we explored PWH's attitudes about using a telehealth program for HIV care instead of face-to-face clinic visits.

Methods

This study was part of a larger study consisting of a one-time self-administered survey and chart review of adult PWH presenting to an outpatient HIV clinic in Houston, Texas, between February and June 2018.

Study population and recruitment

Adult PWH presenting to Thomas Street Health Center HIV clinic were recruited by convenience sampling to complete a one-time computer-assisted self-interview. Thomas Street Health Center is a comprehensive clinic for PWH, Ryan White Comprehensive Care agency, affiliated with Baylor College of Medicine in Houston, Texas, but physically located outside of the Texas Medical Center, and serves around 5500 patients per year.

Instrument development

The initial survey was developed based on a review of the literature and validated questionnaires. It was written at a six-grade reading level and translated into Spanish. Before administering the survey, we conducted cognitive one-on-one interviews, using the Think Aloud method with 11 participants to ensure that the questions were understandable and elicited relevant data.²³ Based on the interviews, we adjusted the wording and structure of the survey. The estimated time to complete the survey was around 30 min.

Outcomes

Survey items shown in Table 2 were used to assess PWH's attitudes toward and concerns for telehealth. Patients were asked: “If you can use live video calls (like skype, facetime, live chat…) to see and talk to your doctor instead of coming to clinic appointments.” Responses were recorded as dichotomous variables: (1) agree (strongly agree, agree) and disagree (uncertain, disagree, strongly disagree); (2) concerned (moderately and extremely concerned) and not much concerned (not at all, slightly, and somewhat concerned), and (3) more likely to use (very likely, likely), and less likely to use (very unlikely, unlikely, uncertain). The survey also included items relating to sociodemographic characteristics, HIV and general health status, access difficulties, and HIV medication adherence, using the 3-item self-report adherence measure by Wilson et al.²⁴ HIV stigma was measured using a validated 12-item short version of the HIV stigma scale by Berger et al.²⁵ Item response score ranged from 0 to 3. Responses were summed resulting in a score ranging from 0 to 36, with higher scores indicating higher stigma levels.^26,27 We extracted the date of birth, HIV viral load test result, and CD4 cell count from the electronic medical record. We used laboratory values closest to the survey date.

Statistical analyses

We used descriptive statistics for variables of interest. We examined the association between these variables and likelihood of using telehealth by Pearson Chi-square analysis and Fisher's exact test. For continuous variables, we used independent-samples t-test. We conducted logistic regression analysis to examine the associations of patient characteristics with likelihood of using telehealth. Adjusted odds ratios (ORs) and accompanying 95% confidence intervals (CIs) were calculated. Significance for all analyses is defined as p < 0.05.

The Institutional Review Boards for Baylor College of Medicine and Affiliated Institutions approved the study protocol. All participants provided verbal informed consent.

Results

Between February and June 2018, 371 participants completed the questionnaire. Less than 10 patients declined to participate in the study and complete the survey. The median age of participants was 51 years; interquartile range was 41–57, and 36% were female. The majority of participants were of minority race/ethnicity (63% African American and 26% Hispanics), US born (83%), and reported heterosexual transmission as HIV risk factor (65%). The sample was slightly different than the most recent 2017 Houston Area/Harris County integrated epidemiologic profile for HIV/AIDS, where the percent of PWH by race/ethnicity is 49.7% black, 28.5% Hispanic, and 17.8% white. By sex, 75.8% male and 24.2% female.²⁸

Among participants who were on ART at the time of the study, 67% had an undetectable HIV viral load. Demographics and other baseline characteristics of the patients are shown in Table 1. None of the respondents had previous experience with telehealth services for their care.

Table 1.

Baseline Characteristics of Participants (n = 371)

Variables	n (%)
Age, years
<35	48 (13%)
35–50	122 (33%)
>50	201 (54%)
Sex
Male	236 (64%)
Female	135 (36%)
Country of origin
Born in the US or US territory	308 (83%)
Born outside the US	63 (17%)
Race/ethnicity
African American	232 (63%)
Hispanic	97 (26%)
Non-Hispanic white	35 (9%)
Asian/other race	7 (2%)
Education
Less than high school	71 (19%)
High school graduate or equivalent	192 (52%)
Some college or more	108 (29%)
Annual household income^a
$10,000 or less ($833/month or less)	204 (60%)
More than $10,000 ($834/month or more)	139 (40%)
HIV risk factors
IVDU	27 (7%)
MSM, no IVDU	105 (28%)
Heterosexual sex/other, no IVDU	239 (65%)
Years living with HIV
≤1 year since diagnosis	26 (7%)
1–10 years	137 (37%)
>10 years	208 (56%)
Years on ART^b
≤1 year	27 (8%)
1–10 years	135 (43%)
>10 years	154 (49%)
ART regimen^b
Single-pill regimen	191 (60%)
Two or more pills regimen	125 (40%)
ART frequency of administration^b
Daily	288 (91%)
Twice a day	28 (9%)
HIV viral load^b <20 c/mL	213 (67%)
CD4 count <200 cells/μL	47 (13%)

Twenty-eight participants (7%) did not fill the income question.

Number include only the participants on ART at the time of the study (n = 316).

ART, antiretroviral therapy; IVDU, intravenous drug use; MSM, men who have sex with men.

Overall 57% of respondents were more likely to use telehealth for their HIV care if available. Regarding the frequency of using telehealth, 37% of participants answered that they will never or rarely use this service, 26% answered sometimes, and 37% of participants answered they will frequently or always use telehealth as an alternative to clinic visits (Table 2).

Table 2.

Survey Items and Response Distributions (by %)

Items	Scale	Response values
		1	2	3	4	5
		% below
Acceptability of telehealth for HIV care
1. If you can use live video calls (like skype, facetime, live chat…) to see and talk to your doctor instead of coming to clinic appointments how likely would you use it?	1–5^a	13	14	17	31	25
2. If you can use live video call to see and talk to your doctor instead of coming to clinic appointments, how often would you use it?	1–5^b	17	20	26	15	22
Benefits of telehealth for HIV care
3. This service will help me because it will fit better my schedule	1–5^c	23	46	11	15	5
4. This service will help me because I will not need to travel to clinic	1–5^c	21	42	10	18	9
5. This service will be good for me because I will have more privacy at home	1–5^c	19	43	10	22	6
6. This service will be good for me because no one will see me at the HIV clinic	1–5^c	12	26	11	39	12
Concerns about telehealth for HIV care
7. My doctor will not be able to examine me well	1–5^d	21	16	14	21	28
8. My personal information will not be safe using the internet	1–5^d	20	8	11	14	47
9. I will not be able to express myself very well	1–5^d	14	9	14	19	44
10. I will use too much data on my phone service or internet	1–5^d	12	5	8	13	62

1 = very unlikely; 2 = unlikely; 3 = uncertain; 4 = likely; 5 = very likely.

1 = never; 2 = rarely; 3 = sometimes; 4 = frequently; 5 = always.

1 = strongly agree; 2 = agree; 3 = uncertain; 4 = disagree; 5 = strongly disagree.

1 = extremely concerned; 2 = moderately concerned; 3 = somewhat concerned; 4 = slightly concerned; 5 = not at all concerned.

Many participants reported several benefits of using telehealth, including telehealth will better fit my life schedule (69%), will not need to travel to come to the clinic (63%), and having more privacy at home (62%). Nearly 40% of participants thought not being seen coming to the HIV clinic to avoid stigma as a benefit to telehealth service and 52% still considered telehealth service beneficial even if they are still required to present for laboratory and medication pickup.

Some patients expressed concerns (moderate or extreme concern) about using telehealth services. Most common concerns were the inability of the physician to perform a good physical exam (37%), safety of personal information on the internet (28%), and not being able to properly express issues and concerns to the provider (23%). Only 17% were concerned about overuse of internet data on the phone or internet service.

Personal factors associated with likelihood of using telehealth

There was no association between age, sex, race, household income, drug use, alcohol use, depression, or self-reported health status with the likelihood of using telehealth. Participants who were US born, men who have sex with men (MSM), or had some college education or higher were more likely to use telehealth for their HIV care (Table 3). The mean HIV stigma score was lower among participants who were less interested to use telehealth and higher in those who are more interested, mean 15 (standard deviation 7.5) versus 17 (standard deviation 7.5) (p < 0.01), respectively.

Table 3.

Willingness to Use Telehealth Services by Baseline Characteristics (n = 371)

Variables	Less likely to use telehealth (n = 161, 43%)	More likely to use telehealth (n = 210, 57%)	p
Age, years			0.63
<35	19 (12%)	29 (14%)
35–50	50 (31%)	72 (34%)
>50	92 (57%)	109 (52%)
Sex
Male	102 (63%)	134 (64%)	0.93
Female	59 (37%)	76 (36%)
Country of origin			0.01
Born in the US or US territory	125 (77%)	183 (87%)
Born outside the US	36 (23%)	27 (13%)
Race/ethnicity			0.31
African American	99 (61%)	133 (63%)
Hispanic	48 (30%)	49 (23%)
Non-Hispanic white	11 (7%)	24 (12%)
Asian/other race	3 (2%)	4 (2%)
Education			0.04
Less than high school	34 (21%)	37 (18%)
High school graduate or equivalent	91 (57%)	101 (48%)
Some college or more	36 (22%)	72 (34%)
Annual household income^a			0.05
$10,000 or less ($833/month or less)	98 (65%)	106 (55%)
More than $10,000 ($834/month or more)	52 (35%)	87 (45%)
HIV risk factors			0.03
IVDU	13 (8%)	14 (7%)
MSM, no IVDU	34 (21%)	71 (34%)
Heterosexual sex/other, no IVDU	114 (71%)	125 (60%)
Years living with HIV			0.03
≤1 year since diagnosis	13 (8%)	13 (6%)
1–10 years	47 (29%)	90 (43%)
>10 years	101 (63%)	107 (51%)
Years on ART^b			0.03
≤1 year	13 (10%)	14 (8%)
1–10 years	45 (34%)	90 (49%)
>10 years	75 (56%)	79 (43%)
ART regimen^b			0.16
Single-pill regimen	74 (56%)	117 (64%)
Two or more pills regimen	59 (44%)	66 (36%)
ART frequency of administration^b			0.04
Daily	116 (87%)	172 (94%)
Twice a day	17 (13%)	11 (6%)
HIV viral load^b <20 c/mL	86 (65%)	127 (69%)	0.19
CD4 count <200 cells/μL	22 (14%)	25 (12%)	0.57

Twenty-eight participants (7%) did not fill the income question.

Number include only the participants on ART at the time of the study (n = 316).

ART, antiretroviral therapy; IVDU, intravenous drug use; MSM, men who have sex with men.

HIV disease factors associated with likelihood of using telehealth

PWH infection for more than 10 years and those who have been on ART for more than 10 years were significantly less interested in using telehealth. Patients who are on twice-a-day ART regimen were also less interested in using telehealth. There was no association between participants with uncontrolled HIV or AIDS (CD4 < 200) and likelihood of using telehealth (Table 3). Medication adherence was not statistically different between participants who are more interested versus participants who are less interested in using telehealth.

Structural factors associated with likelihood of using telehealth

Participants who reported difficulty attending their clinic visits (18%) were much more interested in telehealth as a substitute for face-to-face clinic visit (23% more likely vs. 12% less likely; p < 0.01). Not having a personal computer or smart phone and not knowing enough about computers and smart phones were considered a barrier for the use of telehealth for 31% and 30% of respondents, respectively. Participants who reported not having personal computers or smart phones were significantly less likely to use telehealth versus more likely (44% vs. 22%; p < 0.01). Similarly, participants who reported not knowing enough about computers or smart phones were less likely to use telehealth compared with more likely (44% vs. 22%; p < 0.01).

Participants perceiving greater benefits and fewer concerns for telehealth were significantly more interested in using telehealth (Table 4).

Table 4.

Willingness to Use Telehealth Services by Perceived Benefits and Concerns (n = 371)

Variables	Less likely to use telehealth (n = 161, 43%)	More likely to use telehealth (n = 210, 57%)	p
Benefits
Will fit better my life schedule			<0.01
Agree	65 (41%)	189 (90%)
Disagree	95 (59%)	21 (10%)
Will not need to travel to come to the clinic			<0.01
Agree	59 (37%)	176 (84%)
Disagree	102 (63%)	33 (16%)
Having more privacy at home			<0.01
Agree	58 (36%)	172 (82%)
Disagree	101 (64%)	38 (18%)
Not being seen at the HIV clinic			<0.01
Agree	29 (18%)	112 (54%)
Disagree	132 (82%)	97 (46%)
Concerns
Inability of the physician to perform a good physical exam			0.04
Concerned	67 (42%)	68 (33%)
Not much concerned	93 (58%)	140 (67%)
Safety of personal information on the internet			0.04
Concerned	52 (33%)	49 (24%)
Not much concerned	108 (67%)	158 (76%)
Not being able to properly express issues and concerns to the provider			<0.01
Concerned	49 (31%)	37 (18%)
Not much concerned	111 (69%)	171 (82%)
Overuse of internet data on the phone or internet service			0.02
Concerned	35 (22%)	27 (13%)
Not much concerned	125 (78%)	181 (87%)

Answers were dichotomized to create two groups, agree (strongly agree, agree) and disagree (uncertain, disagree, strongly disagree). For concerns, answers were dichotomized to concerned (moderately and extremely concerned) and not much concerned (not at all, slightly, and somewhat concerned).

In multivariate analysis, adjusted for age, sex, education level, and HIV risk factor, patients who were US born compared with foreign born were more likely to use telehealth [OR 4.38 (95% CI 2.17–8.86); p < 0.01]. MSM were also more likely to use telehealth as compared with patients who inject drugs, and heterosexual as HIV risk factors [OR 2.42 (95% CI 1.01–5.83); p = 0.04]. On the other hand, patients who are on twice-a-day ART regimen as compared with once-a-day regimen were less likely to use telehealth [OR 0.28 (95% CI 0.11–0.69); p < 0.01].

Discussion

Our study shows an overall positive attitude toward the use of telehealth for HIV care among PWH. More than half of participants were likely to use telehealth when available and almost a third of the participants were willing to replace face-to-face clinic visits by telehealth frequently or always.

In our study, sociodemographic factors, such age, sex, race, and income, were not associated with attitude for telehealth among PWH. These findings suggest that telehealth appeals to not only a larger group of people but also the young and those with higher income. However, lower educational attainment, not having or not being familiar with the technology significantly decreased their willingness to use telehealth. Attention to the issue of internet inequality and computer literacy is important to eliminate these barriers for telehealth implementation. If patients were provided with telehealth equipment and adequate training in using them, they might become more confident and subsequently more interested in using telehealth.

Patient's well-being and disease status could be important considerations in selecting patients for telehealth program from the physician perspective. On the other hand, from the patients' perspective, interest in telehealth service was not related to health status. The willingness to use telehealth spans across those with perceived excellent and poor health, as well as those with controlled HIV with suppressed HIV viral load, and those with uncontrolled HIV. However, having longstanding HIV for more than 10 years, or being on ART for more than 10 years, and having a more complex ART regimen were all factors associated with less likelihood of choosing telehealth as an alternative to clinic visits for their HIV care.

HIV-related stigma associated with coming to HIV clinic and having more privacy at home were important factors for participants who were likely to use telehealth. Similarly, participants with higher stigma levels on the HIV stigma scale were more interested in telehealth. Although participants in our survey reported few difficulties with health care access, there was strong association between having difficulty attending clinic and willingness to use telehealth services. This finding is consistent with prior studies that consistently showed transportation as a barrier to retention in care.⁷ This suggests that telehealth could be an important solution for PWH who are not retained in care. A recent study evaluating the availability of telehealth programs on HIV viral suppression and retention in care in Veterans Administration (VA) clinics, did show improvement in retention in care.²⁹ However, the results of this study may not be generalizable outside the VA and more research is needed.

In the future implementation of telehealth, it will be very important to develop criteria to identify what type of telehealth interventions would be used (live video replacing face-to-face clinic, store and forward, teleconsultation, mobile health), the specific services that would be provided, the sites where telehealth would be implemented, and the most important, to establish patient selection and exclusion criteria to receive care through telehealth.³⁰ Several factors should be included in the patient selection process, including patient's attitude toward telehealth, patient's access and ability to handle the technology, patient's disease status, and prior relationship with the provider.³¹

Our study is limited to a single center, so our results may not generalize to the general population. Although we explored the attitude of PWH about using telehealth for their HIV care, their actual experience with this new technology might be different from their expectation and might change their willingness to use telehealth. Another limitation, inherent to survey questionnaires, is the reliability and validity of the questions. We tried to overcome this limitation by conducting cognitive interviews to ensure the clarity of the questions. Lastly, we did not explore in our study the patient satisfaction with their clinic experience and their provider, which could have an impact on the likelihood of accepting telehealth services as an alternative.

In conclusion, we need new ways to improve retention in care and to eliminate some of the barriers. In our study cohort, the majority of PWH are willing to use telehealth services, especially those who have difficulty scheduling clinic visits, those who perceived HIV-related stigma, and those with higher education attainment. Whereas participants who had longstanding HIV disease were less interested. Some barriers and concerns with regard to safety of personal information, ability of effective communication and examination, availability and confidence using various technologies, need to be addressed to increase acceptability and usage of telehealth among PWH.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

There was no funding provided for this study.

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