Pilot Trial of Quarterly Text-Based Patient Contacts to Increase Engagement in HIV Care Postpartum: Lessons Learned

Abstract

Introduction:

In South Carolina, there is a high prevalence of pregnant and postpartum individuals with HIV not engaged in medical care, potentially resulting in higher rates of perinatal transmission. Innovative patient-centered approaches are needed to improve care access and engagement. The purpose of this study was to determine if text-based communication during the postpartum period would result in increased HIV care engagement and HIV viral suppression after delivery.

Methods:

We conducted a 21-month prospective pilot study. Postpartum people with HIV were texted a quarterly message following the delivery of a viable infant. Texts were in the form of a brief survey to inquire about their well-being and if they desired antiviral medication refills, contraceptive services, or an appointment. We evaluated the number of postpartum people who had a HIV care visit and/or HIV RNA tests within 12 months postpartum. One-year postpartum, participants were offered phone interviews to collect feedback on program quality.

Results:

Twenty-nine people with HIV delivered viable infants. Eight (28%) responded to at least one text message postpartum. Twenty (69%) were 1-year postpartum and eligible for analysis, and four (20%) agreed to phone interviews. Less than half of 1-year postpartum people had an HIV care visit (n = 9, 45%). More than half had an HIV RNA test (n = 13, 65%), but only 69% were virally suppressed (n = 9).

Discussion:

Although interviewed participants provided positive feedback, fewer postpartum people with HIV utilized text communications than expected (28%). Postpartum engagement in HIV care and ongoing viral suppression were lower than desired (52% and 80%), and text responders were not more engaged or more likely to be suppressed. Strategies to improve ongoing postpartum care engagement are still needed.

Introduction

South Carolina has a high HIV prevalence; there were ∼19,872 persons living with HIV as of 2021.¹ The Department of Public Health (SCDPH) estimates that approximately one-third of persons living with HIV in South Carolina are out of care,² which is defined by the absence of an HIV RNA viral load (copies/mL) test within 13 months. In South Carolina, all HIV viral loads collected in the state are reported to SCDPH. Although there are limitations to using a laboratory value to indicate ongoing care, SCDPH uses the absence of viral loads to identify persons with HIV who need to be re-engaged in care.²

People not engaged in HIV care are less likely to be taking effective antiretroviral therapy (ART), defined as treatment that results in HIV viral suppression. Without effective treatment, HIV disease is more likely to progress to AIDS. Persons with HIV not taking effective ART are also more likely to transmit HIV disease to at-risk sexual partners, and pregnant people not taking effective ART are more likely to transmit HIV to their infant(s).³ Postpartum people with HIV are at risk of being out of care within the first 12 months of delivery.⁴ This has been attributed to increased rates of postpartum depression, increased stressors related to care of an HIV-exposed or infected newborn, and poor social support.⁵ People diagnosed with HIV while pregnant are more likely to have elevations in HIV viral load postpartum, which suggests reduced use of ART.⁶ Those who disengage from HIV care postpartum are more likely to have elevated HIV viral loads in a subsequent pregnancy, which increases the risk of perinatal transmission.⁷

Due to high percentages of people with HIV being out of care, there is a need for patient-centered interventions to help them remain engaged in care. Text messaging services have been evaluated to improve retention of care for postpartum women with HIV^8,9 and rates of HIV testing in HIV-exposed infants, yielding mixed results.^10–13 As part of a strategic plan to eliminate HIV transmission, the Centers for Disease Control and Prevention endorse an intensification of outpatient monitoring and case management of pregnant and postpartum people to improve engagement and retention in HIV care.^14,15

The Medical University of South Carolina Women’s Health Center provides specialty care for pregnant people with HIV. This specialty clinic is staffed by reproductive infectious disease specialists who provide pregnancy and HIV care simultaneously. We have demonstrated that this model of care can successfully reduce perinatal HIV transmission due to improved viral suppression during pregnancy, increase use of long-acting reversible contraceptives (LARC) postpartum, and increase the likelihood of a postpartum follow-up visit (<12 weeks of delivery).¹⁶ We have also demonstrated successful ongoing use of LARC among postpartum women with HIV and lower rates of short-interval pregnancies.¹⁷ Although this program has continuously been in effect since 2009, a significant number of postpartum people do not return for ongoing HIV care within 12 months of delivery. We have observed that individuals residing outside the urban tri-county area (Berkeley, Charleston, and Dorchester) surrounding our academic medical center are less likely to return for ongoing HIV care postpartum.

People living with HIV in rural communities outside of the area surrounding our academic medical center are likely disproportionately affected by limited access to high-speed internet.¹⁸ As a result, these individuals are unable to easily take advantage of telehealth options, such as virtual visits, that require internet access.¹⁹ As opposed to utilizing internet-based telehealth video visits, we believe rural residents living with HIV are more likely to use text messages to communicate with health care providers postpartum. Text-based evaluation and referral for maternal mental health disorders has been successful in our center’s antenatal clinics, including rural residents.²⁰ Our objective was to evaluate asynchronous text reminders to improve postpartum HIV care engagement within the first year following delivery.

Methods

All pregnant people with HIV receiving care at our specialty clinic were eligible to participate in postpartum text reminders if they owned a cellular phone that can receive texts and were enrolled in the application-based patient portal (EPIC MyChart^©, Verona, WI). As a quality improvement project, participants did not sign a consent form. Eligible persons were informed of the postpartum text program during routine antenatal care visits at the HIV pregnancy specialty clinic.

Following delivery, participants’ cell phone number and date of delivery were entered into REDCap^®.²¹ Within 1-week postpartum, people with HIV who delivered a viable infant were reminded via MyChart message that they were enrolled in a postpartum text program and would receive a text approximately every 90 days in the first year after delivery (Appendix). Participants were able to disenroll from text messages at any time. University telehealth communications could not verify if participants would receive wireless carrier fees for receiving or replying to text messages.

REDCap has the capability to make voice calls and send SMS text messages for surveys and for alerts and notifications by using Twilio, a third-party web service. Twilio is a communications company that provides tools to create and utilize application programming interfaces to send and receive text messages, phone calls, and other forms of communication between a business and clients/stakeholders/constituents (Twilio Inc.^©, San Francisco, CA, www.twilio.com). In this project, Twilio sent texts which were framed as a brief survey to inquire about participants’ well-being and determine if they needed any medication refills, appointments, or family planning services (Appendix). Message recipients were invited to complete a survey via the SMS message. Participant responses to survey questions via text or via a webpage link were captured in REDCap. During the enrollment period, Twilio was out of service for four consecutive months (May–August 2023). This would have affected text messages sent to nine enrollees. After observing lower than expected response rates for text responses, the Twilio platform was updated to send a link to open a web-based survey that included the postpartum text questions (February 2024) as an alternative to enter responses instead of responding to questions via text messages.

Following study enrollment, EPIC Clarity was used to abstract data from the electronic health record (EHR). The following variables were obtained from the EHR for the first year postpartum period: age, race, ethnicity, insurer, residence in a rural area, active MyChart account at enrollment, opened MyChart within 1-year postpartum, visit(s) with HIV care provider, number of in-person and telehealth visits (video or phone call), and HIV RNA (copies/mL) values. Any responses submitted from enrolled postpartum persons were read and if a response was requested regarding appointments, medication, or contraceptive needs, the participant was contacted by phone and/or MyChart messages.

Beginning January 9, 2024, participants who were at least 1-year postpartum were contacted via MyChart to participate in a voluntary phone interview (Appendix). Interviews were conducted to evaluate participants’ experiences with pregnancy, delivery, and postpartum care within our specialty practice. Interview participants were asked to comment on the postpartum text messages and whether they were a useful and desired form of communication. Nineteen people who were at least 1-year postpartum were invited to interview. Five responded to the interview invitation, and four completed a phone interview between January and May 2024 with two female interviewers, who are trained in qualitative methods, and not involved in management or delivery of patient care. The interview guide included questions based on care received during pregnancy and during the postpartum period, preferences for the format of patient care visits, and feedback on the text-based messaging program. Interviews lasted between 6 and 22 min and were audio recorded with field notes completed during and immediately following the interviews. Participants were offered a $30.00 gift card after completion of the interview.

Since the interview participants were all women who had delivered a child within the past year, the interview environment for all four interviews included substantial background noise of young children. Based on the audio file background noise and quality, it was decided transcribing the interviews would not be advantageous. Thus, the Rapid Identification of Themes from Audio Recordings qualitative method was utilized for interview data analysis, which identifies themes by audio time segment and maintains verbal and nonverbal content.²² Two evaluators developed focused evaluation questions and then identified key themes inductively and deductively, based on both literature in this field and interview field notes. A coding document with five themes was created and pilot tested with the first audio recording. Then, both coders listened to all four audio files and marked whether a theme was present by 3-min segments, with another section available for new themes to emerge as applicable. During the coding process, key direct quotations were recorded within each theme. After the coding process, coders met to ensure consistency in theme designation, frequency and percentages of mentions by theme by interview were counted, and data were summarized.

The Medical University of South Carolina Institutional Review Board (IRB) approved this as a quality improvement project and did not require formal IRB approval.

Results

In the study period (June 5, 2022, to April 8, 2024), 43 people were referred and/or established within the clinic. Of those 43 individuals, 14 were ineligible for enrollment in the study (due to pregnancy loss, Spanish speaking, enrolled in study in previous pregnancy, delivered baby at another hospital). Thus, 29 people with HIV delivered a viable infant during the study period and were enrolled in the study. Most people (n = 23, 79%) lived in the three counties surrounding our academic center, and only six participants (21%) resided in a rural community. Most participants (62%) self-identified as non-Hispanic black race and one identified as Latina. At the time of this analysis, 20 participants were at least 12 months or 1-year postpartum. Five participants were established within our academic center’s adult HIV clinic before pregnancy. Fifteen participants were not established in the HIV clinic before pregnancy. They were either referred to our facility from an outside hospital for specialty care or had a new HIV diagnosis during pregnancy (Table 1).

Table 1.

Characteristics of People with HIV Engaged in Specialty Pregnancy Care

	Total(n = 29)	1-year postpartum (n = 20)	Text response (n = 8)	Interviewed (n = 4)
HIV care
Established	9 (31%)	5 (25%)	3 (38%)	2 (50%)
External referral	20 (69%)	15 (75%)	5 (62%)	2 (50%)
Residence
Urban	23 (79%)	16 (80%)	6 (75%)	2 (50%)
Rural	6 (21%)	4 (20%)	2 (25%)	2 (50%)
Race/ethnicity
Black, non-Hispanic	18 (62%)	12 (60%)	6 (75%)	3 (75%)
White, non-Hispanic	10 (34%)	8 (40%)	2 (25%)	1 (25%)
Latina	1 (3%)	0 (0%)	0 (0%)	0 (0%)
Insurer
Public	11 (38%)	7 (35%)	3 (38%)	3 (75%)
Private	5 (17%)	3 (15%)	1 (13%)	1 (25%)
Self-pay	1 (3%)	0 (0%)	0 (0%)	0 (0%)
Missing	12 (41%)	10 (50%)	4 (50%)	0 (0%)
MyChart^© active	28 (97%)	19 (95%)	8 (100%)	4 (100%)

Care engagement

At the end of the study period, all but one participant (n = 28, 97%) had an active MyChart account. During the 22-month study period, eight individuals responded to at least one text message. Two participants (40%) responded to three of four texts within the first year postpartum. Two text message respondents lived in rural communities (40%). Among the 20 one-year postpartum participants, 6 responded to any postpartum texts (30%) (Fig. 1).

FIG. 1.

Patient Text Engagement.

After delivery, over half of postpartum people had an HIV care visit within 1 year (n = 15, 52%). Twenty (69%) had an HIV RNA viral load test and 16 (80%) were virally suppressed. Of the five previously established participants, only one (20%) had an HIV care visit postpartum. Within 1-year postpartum group, 9 of 20 (45%) had at least one HIV care visit. Thirteen (65%) had an HIV RNA test and 9 (45%) were virally suppressed. A third of text responders (2/6, 33%) and half (7/14, 50%) of nonresponders had an HIV care visit within the first year postpartum. A higher percentage of text responders had an HIV RNA test postpartum (83% vs. 57%), but non-text responders were more likely to have viral suppression (75%) compared with text responders (67%) (Table 2).

Table 2.

Program Outcomes Among People with HIV 1-Year Postpartum

	Total(n = 20)	Text responders(n = 6)	Nonresponders (n = 14)
HIV care visit	9 (45%)	2 (33%)	7 (50%)
HIV viral load test	13 (65%)	5 (83%)	8 (57%)
Virally suppressed	9/13 (69%)	4 (67%)	6/8 (75%)

Program quality

Of the four participants interviewed, two were knowledgeable about the text-based system for communication with the provider and had utilized the program in the last year. They both reported that they would like to continue receiving and responding with text messages. These patients described the text messages as “quick and easy” and liked the ease of communication and decrease in the need for phone calls resulting from the utilization of text program. According to one patient, the benefits of texts were “they [clinicians] didn’t have to call me all the time. They can send a text and I can reply.” Despite being informed of the text message program by the lead obstetrician during antenatal visits and through a follow-up MyChart message postpartum, two of the patients reported not having knowledge of the text-based system and did not recall receiving any texts, but relayed they would utilize the system in the future, if possible.

In the interviews, three of four participants discussed positive aspects of HIV specialty care both during pregnancy and the postpartum period. These participants reported that they received enough information on HIV care and breastfeeding and appreciated the assistance to acquire needed expensive medications. One participant stated, “it [the program] was awesome” and another stated, “they [providers] really showed they cared about me.” Three of the four participants specifically mentioned the ease and benefit of using MyChart to contact providers for information or to acquire a referral for a specialty physician appointment. These three participants did not have negative feedback or suggestions for improvement related to the program. One participant described challenges related to breastfeeding her infant. She suggested that providers should enhance communication and collaboration between obstetricians and pediatric specialists for people with HIV who choose to breastfeed.

In terms of access to care, one participant mentioned transportation as a barrier to getting to appointments. Another participant indicated her phone number had changed, and therefore she had not connected with the specialty pharmacy and needed a medication refill. While all four respondents highlighted aspects of the program for clinicians to improve care, three of the four participants indicated they would like even more time with the providers. One participant indicated she would like to speak with the physician more often. Two participants relayed that both while pregnant and in the postpartum period, they would like to have more provider visits (one more visit per month). One participant said [with a laugh] that she would like to be seen less often, and one less visit per month would be ideal. There were mixed opinions on preference for the visit format. One participant discussed a preference for both in-person and video visit options, depending on the type of topics that needed to be discussed with the provider during the appointment. One participant preferred in-person visits. The third participant preferred video format visits in the postpartum period, due to difficult logistics with a baby and transportation. The fourth participant reported that either in-person or video visits would be helpful if communication was cohesive among all providers and between herself.

Discussion

Our observed response rates to quarterly text-based surveys in the first year postpartum were lower than anticipated. Of the eight postpartum people who responded to at least one postpartum text, 40% reside in rural areas. The percentage of rural respondents is higher than that observed in the general specialty clinic practice; 21% of total people enrolled lived in rural areas. This suggests that rural residents with HIV may be more likely to utilize text-based communication postpartum to facilitate ongoing care. Despite prior success with text-based evaluations and ongoing treatment of mental health disorders in postpartum people receiving care in our specialty clinic, we did not find the same uptake for coordinating ongoing HIV care.²⁰ The overall observed low texts response rate postpartum may have been related to a high number of participants receiving HIV care outside of our hospital system before pregnancy or having a new HIV diagnosis (69%).

Participation in phone interviews to provide feedback on the quality of antenatal care and quarterly texts postpartum was lower than expected (20%). Of the four people who volunteered and completed the phone interview, only two had responded to text-based contact in the first year postpartum and both individuals lived in rural communities. The other two participants stated they did not know about the texts but would have been interested. All enrolled participants were informed in person by the lead obstetrician during antenatal visits and postpartum via a follow-up MyChart message describing the program and advised to save the phone number for text contacts in their mobile device. It is unclear why this communication was not recalled by interview participants. However, it has been noted that new parents may experience information overload and have difficulty remembering new knowledge.²³ This may be accentuated in new parents who are also balancing their own health care needs, thus emphasizing necessity for multimodal types of communication with this population.

Previous studies have investigated the potential for text-based communication to improve maternal ART usage,¹⁰ HIV care engagement during pregnancy⁹ and postpartum,^8,13,24 and HIV-exposed infant testing.^11,12 Although these studies are conducted in low-income settings, they offer perspective to the failure or success of text-based communication to postpartum people with HIV. A Cochrane review of targeted client communication via mobile devices evaluated 27 trials (n = 17,463 pregnant and postpartum people) in low-, middle-, and high-income countries. This meta-analysis did not show a benefit of text-based communication for increasing antenatal care visits or infant HIV prophylaxis adherence but potentially a minimal benefit to maternal ART adherence, postpartum follow-up, and infant HIV testing and childhood immunizations.¹⁰ Another meta-analysis of nine studies (n = 3,004 pregnant people with HIV) reported retention to HIV care was higher in a subanalysis of postpartum African participants (n = 2,182) in low-income countries receiving texts in randomized controlled trials (OR: 2.92, 95% CI = 1.13–7.53).²⁴ A South African retrospective cohort study of the mHealth intervention reported 90% of pregnant people with HIV were willing to receive texts during pregnancy. They observed increased participation in antenatal care but failed to show an increase in postpartum visits.⁹ Despite being well received by pregnant clients, authors reported resistance from health care workers to enroll pregnant people with HIV and their infants in text-based reminders of clinic appointments and laboratory testing. Reasons provided by health care workers were the burden of additional work and a negative perception of using texts to contact people outside of clinic visits.⁸ In a subsequent publication, these authors did not observe a benefit to text-based communication in postpartum visits attended or infant testing postpartum.¹¹ In contrast, Odeny et al reported relatively low percentages of Kenyan postpartum people engaging in postpartum care but increased visits among persons randomized to text reminders (19%) compared with the control group (11%; RR: 1.66, 95% CI = 1.02–2.70).¹³ Postpartum persons randomized to text reminders also had higher exposed infant HIV testing (RR: 1.09, 95% CI = 1.01–1.17). Odeny et al. note that barriers to postpartum engagement may not be modifiable through text intervention. To further improve the text-based intervention, they suggest that individualizing messaging based on maternal and infant names, preferred language, and preferred visit times may result in improved retention and testing postpartum.¹³ WelTelPMTCT, a randomized controlled trial of text-based reminders for Kenyan HIV-exposed infant testing, did not find an increase in infant testing among those randomized to the weekly texts intervention.¹²

Previous studies report mixed results on the benefits of text-based communication to improve maternal ART usage, engagement in HIV care during pregnancy and postpartum, and infant testing. Similar to these published studies, our pilot study in an urban, U.S. academic medical center demonstrates low postpartum engagement including a low percentage of people having ongoing HIV care with viral testing and suppression. At this time, we cannot recommend text-based communication as an effective intervention for these desired outcomes. As one interview participant highlighted, MyChart utilization is not affected by change in phone numbers as texts and phone calls are. The MyChart message may be a solution to improved communication and care engagement to phone-based communication.

We failed to show noteworthy utilization of text-based communication in postpartum people with HIV receiving specialty care in an academic medical center. Despite this, postpartum people expressed overall satisfaction with the quality of their specialized antenatal and delivery care, with minimal suggestions for improvement. Participants appreciated the increased access to their pregnancy care provider and highlighted scenarios where in-person, text, and video visits would be appropriate. This finding is similar to other studies reporting that participants desired options for multiple visit types to fit their needs as an important component of patient-centered care.²⁵ A key lesson learned from this study is to select the intervention based on what the patients are familiar with and comfortable using. Our interview participants had positive feedback about utilizing MyChart, and 97% of the participants had an active MyChart account.

Our study had several limitations. First, the purpose of the intervention was to increase postpartum care engagement in people with HIV, a vulnerable population historically susceptible to lapses in HIV care engagement. We specifically hoped to improve engagement among rural residents living with HIV. The challenges and barriers to maintaining contact with postpartum people with HIV contributed to our low participant numbers and difficulties in scheduling phone interviews to obtain program feedback. We took several measures to mitigate the low communication limitation including adapting the text messages, contacting through multiple mechanisms (text and MyChart messages), and offering incentives. However, potential fees for receiving or replying to text messages may have further limited participation in the study.

Conclusion

Approaches other than text messaging that effectively improve postpartum care retention among people with HIV have been described. These include close case management with peer-support and social services during and after pregnancy.^14,16 Although our HIV pregnancy specialty clinic provides access to in-person peer support, social work and case management, behavioral health providers, and trauma therapy, <90% of pregnant people with HIV engaged in postpartum visits or had HIV-related visits in the first year postpartum. In addition to low engagement in HIV care visits, we also observed HIV viral rebound (detectable HIV RNA) in 20% of postpartum people who were previously established in HIV care, suggesting a lapse in ARV use. Ideally, >90% of people with HIV would be engaged in care and be virally suppressed to reduce ongoing HIV transmission in the community. To eliminate perinatal HIV infections, further studies are needed to identify effective strategies for continuing ART use and HIV care engagement postpartum. From patient feedback, we may consider investigating additional methods to support breastfeeding women with HIV during the postpartum period. We are hopeful that continued research to understand if and how technology may help augment these efforts will be informed by the results of this study.

Footnotes

Acknowledgment

The authors would like to thank John Clark.

Authors’ Contribution

E.J.: Data curation, formal analysis, and writing original draft. J.H.: Data curation, formal analysis, and writing original draft. K.K.: Software and data curation. R.V.: Project administration. S.D.O.: Project administration. K.K.: Funding acquisition, conceptualization, supervision, and resources. G.B.L.: Conceptualization, methodology, data curation, formal analysis, investigation, and writing original article.

Authors Disclosure Statement

None of the authors have a conflict of interest.

Funding Information

This study is funded by the REDCap^® grant support UL1 TR001450, MUSC Telehealth Centers of Excellence. This publication was made possible by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) as part of the National Telehealth Center of Excellence Award (U66RH31458). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the US Government.

Abbreviations Used

Appendix

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