Andrea J. Apter,Tyra Bryant-Stephens,Hami Park,Heather Klusaritz,Xiaoyan Han,Knashawn H. Morales
Trust and virtual communication during the COVID-19 pandemic for adults with asthma from low-income neighborhoods: What have we learned?
Asthma,health disparities,health communication,trust,COVID-19
Background Low-income and marginalized adults disproportionately bear the burden of poor asthma outcomes. One consequence of the structural racism that preserves these inequities is decreased trust in government and health care institutions. Objective We examined whether such distrust extended to health care providers during the pandemic. Methods We enrolled adults living in low-income neighborhoods who had required a hospitalization, an emergency department visit, or a prednisone course for asthma in the prior year. Trust was a dichotomized measure derived from a 5-item questionnaire with a 5-point Likert scale response. The items were translated to the binary variable “strong” versus “weak” trust. Communication was measured using a 13-item questionnaire with a 5-point Likert scale. Logistic regression was used to examine the association between communication and trust, controlling for potential confounders. Results We enrolled 102 patients, aged 18 to 78 years; 87% were female, 90% were Black, 60% had some post–high school education, and 57% were receiving Medicaid. Of the 102 patients, 58 were enrolled before the March 12, 2020, pandemic start date, and 70 (69%) named doctors as their most trusted source of health information. Strong trust was associated with a negative response to the statement “It is hard to reach a person in my doctor’s office by phone.” There was no evidence of an association between the overall communication scores and trust. Satisfaction with virtual messaging was weaker among those with less trust. Conclusions These patients trust their physicians, value their advice, and need to have accessible means of communication.
Trust and virtual communication during the COVID-19 pandemic for adults with asthma from low-income neighborhoods: What have we learned?

Low-income and marginalized adults disproportionately bear the burden of poor asthma outcomes. One consequence of the structural racism that preserves these inequities is decreased trust in government and health care institutions.

We examined whether such distrust extended to health care providers during the pandemic.

We enrolled adults living in low-income neighborhoods who had required a hospitalization, an emergency department visit, or a prednisone course for asthma in the prior year. Trust was a dichotomized measure derived from a 5-item questionnaire with a 5-point Likert scale response. The items were translated to the binary variable “strong” versus “weak” trust. Communication was measured using a 13-item questionnaire with a 5-point Likert scale. Logistic regression was used to examine the association between communication and trust, controlling for potential confounders.

We enrolled 102 patients, aged 18 to 78 years; 87% were female, 90% were Black, 60% had some post–high school education, and 57% were receiving Medicaid. Of the 102 patients, 58 were enrolled before the March 12, 2020, pandemic start date, and 70 (69%) named doctors as their most trusted source of health information. Strong trust was associated with a negative response to the statement “It is hard to reach a person in my doctor’s office by phone.” There was no evidence of an association between the overall communication scores and trust. Satisfaction with virtual messaging was weaker among those with less trust.

These patients trust their physicians, value their advice, and need to have accessible means of communication.

Asthma disproportionately burdens low-income and underrepresented adults, who often have additional chronic health problems and face social determinants of health barriers and difficulty accessing care.1, 2, 3 The coronavirus disease 2019 (COVID-19) pandemic further upended the lives of these historically marginalized patients. Obtaining health information became more complicated and difficult. Many clinics were initially closed. Patients expressed less trust of health information because of the pandemic, the initial lack of medical knowledge of the best ways to treat COVID-19, and the national disorganized response to the virus.4, 5, 6 Additionally, trust in government in general and therefore in government efforts to address COVID-19 and public health were eroded by events surrounding the 2020 election and the January 6, 2021, assault on the US capital. The murder of George Floyd and many other people of color by police contributed to mistrust of any information coming from government sources, including health information. Trust is necessary for successful transmission of health information between clinicians and patients. Communication is an essential part of the process of providing the information that builds trust. , During the pandemic, communication between patients and health care teams was bolstered by increasing use of cell phones and computers by health systems. Patients with cell phones and computers could contact their doctors’ offices more easily, both facilitating access to care for those with technology resources and literacy and, at the same time, deepening inequities for those without these tools. With access to social media, patients could also be exposed to untrue information more readily. We hypothesized that communication is a necessary but insufficient component for building trust and that satisfaction with virtual technology is associated with strong communication and trust. For this study, we used information from the enrollment interview and a questionnaire about experiences related to the COVID-19 pandemic from a large ongoing study called Helping Asthma Patients #3 (HAP3). HAP3 is a National Heart, Lung and Blood Institute–funded intervention to improve asthma outcomes for low-income patients. With these data, we examined communication between patients and their clinicians, patients’ trust of their clinicians, and patient satisfaction with virtual communication.

This is a descriptive substudy of the study Clinic Navigation and Home Visits to Improve Guideline-Based Asthma Care in Low-Income Adults with Poorly Controlled Asthma” (grant HL R01 HL143364; ClinicalTrials.gov identifier NCT 04023422), also called HAP3. HAP3 is a randomized pragmatic factorial trial of adults with uncontrolled asthma living in low-income urban neighborhoods. Navigators, who are research coordinators trained in motivational interviewing, asthma, and cultural competency, deliver the HAP3 interventions. Navigators attend the clinic visits of participants and make home visits or provide clinician feedback, if so randomized. These activities are intended to prompt and motivate communication between patient and clinician. Details of this study have been published. HAP3, including this analysis, received institutional review board approval from the University of Pennsylvania Institutional Review Board (this subanalysis is supported by grant: HL R01 HL143364).

The participants were at least 18 years and lived in zip codes in which approximately 20% of the households were at the federal poverty level. Additionally, participants had a doctor’s diagnosis of asthma, had been prescribed an inhaled corticosteroid for asthma, and had required prednisone, an emergency department visit, or hospitalization for asthma within the past 12 months. Participants were recruited from 6 primary care (general internal medicine and family medicine) and 3 specialty (2 pulmonary and 1 allergy-immunology) practices. The first column of Table I lists characteristics assessed in the participants. Patients were ineligible if they had severe psychiatric or cognitive impairment making it impossible to understand or carry out the 18-month protocol of the parent study. Current and former smokers with less than 15 pack years of smoking exposure were permitted to enroll. All patients were enrolled either just before or during the start of the pandemic (ie, just before or after March 12, 2020).

For this substudy, we revised and used a data collection phone call for HAP3, adding questions about trust of the source of health information and acceptability of virtual visits to a data collection phone call for HAP3. The research coordinator, who was not the patient’s navigator, inserted these questions into a data collection session convenient for the researcher and patient, usually data collection phone call 3, 4, or 5, because they were the shortest visits.

We developed this questionnaire after the pandemic began; it was developed on the basis of conversations with patients, our community advisory board members, and investigator team members. Patients were asked which source of COVID-19 health information they trusted most (Table II ) and to what degree (see Table III ). The majority of patients reported trust in their doctor’s office, and we focused the trust measurement on this source. Because of the small number of patients in the degree of trust categories (ie, no trust [4 participants], a little trust [2], neutral [5], some trust [7], and most trust [74]), a binary variable was defined as follows: Trust = 0, if the participant selected no trust, a little trust, neutral, or some trust (we termed this variable weak trust); Trust = 1, if the participant selected most trust (we termed this variable strong trust).

Several years ago, because there were no questionnaires describing satisfaction with the patient-physician relationship for underrepresented patients, we developed such a questionnaire. , The first column of Table IV describes this 13-item questionnaire. Each item has a 5-point Likert response score. Scoring for items 3, 4, 5, 7, 8, 9, 10, and 11 was “reversed,” so that a higher score on each item was associated with better communication. For example, consider item 4, “My doctor answers my questions.” The choices of answers are 1 ("definitively true"), 2 ("mostly true"), 3 ("don’t know"), 4 ("probably false"), and 5 ("definitely false"). To reverse the scoring, “definitely true” is given the new value 5, “mostly true” is rescored as 4, “don’t know” remains scored as 3, “probably false” is rescored as 2, and “definitely false” is rescored as 1. A summary communication score, the sum of individual scores of items 1 to 13 of the communication questionnaire, is a number between 13 and 65. This questionnaire was administered to all participants at enrollment.

During the pandemic, for the first time appointments could be accomplished virtually, with practices helping patients use virtual platforms for communication and thereby controlling patient concern about acquiring an infection in a crowded public area. Patients were asked whether they had had a virtual meeting and how satisfied they were with it on a 5-point Likert response score. Patient responses regarding satisfaction with virtual meetings were collected along with answers to the trust questions.

Potential confounders were selected from characteristics hypothesized to be closely associated with the risk of impaired trust or poor communication: age, self-reported sex, health insurance type, and educational attainment (whether the patient was a high school graduate).

We examined responses for trusted sources and level of trust for the sources. Bivariable associations between trust and demographic characteristics were also examined. The relationship between trust and communication was examined for each item of the communication scale by using a 2-sample t test. Logistic regression was used to examine the association between trust and communication attributes while adjusting for potential confounders.

The study surveyed 102 patients, who ranged in age from 18 to 78 years; 87% described themselves as female, and 90% self-reported being of the Black/African American race. With respect to health insurance, 57% were receiving Medicaid, 18% were receiving Medicare only, and 25% had some form of commercial insurance. Of the 102 patients, 58 were enrolled before March 12, 2020, and the other 44 were enrolled during the pandemic (after March 12, 2020). The time between completion of the communication questionnaire at enrollment and the COVID-19 questionnaire examining trust and virtual visits ranged from 0 to 680 days. Table I describes the participants in more detail as well as the association between participant characteristics and trust. When asked which sources among 5 choices they used for health information related to COVID-19, 70 persons (69%) named doctors as their most trusted source of health information (Table II). Patients trusted their doctors more than the news (radio, television, and/or newspapers), social media, family, or friends (Tables II and III), although they were exposed to several sources of information (Table V ). Patient ratings of the quality of communication with their doctors were strong overall (Table IV). There was no evidence of a difference in average communication scores for those participants enrolled before the pandemic struck on March 12, 2020, and the 44 enrolled after that date. Bivariable analyses identified differences in communication ratings by trust. On average, those with limited trust reported lower satisfaction in being able to reach medical personnel in their doctor’s office by phone when asthma was troublesome (P ≤ .02 [items 6 and 7 of Table IV]). Overall, there was no evidence of an association between overall communication scores and trust (P = .07 [Table IV]). Adjusting for potential confounders (age, sex, insurance type, and educational achievement), higher satisfaction with communication (item 6 of Table IV) was associated with higher odds of strong trust (odds ratio = 1.56 [95% CI = 1.05-2.31]); chi-square P = .026). The association between communication measured by item 7 of Table IV and trust was not statistically significant after adjusting for confounders. In all, 90 patients (88%) had at least 1 virtual medical appointment with their doctor at the time of the survey. Of the 90 patients, 73% reported trusting their doctor. Their level of satisfaction with the virtual meetings with their doctor was high, but less so for those with limited trust (t test result =2.34 [P = .021]).

These patients, who had moderate-to-severe asthma and were living in low-income neighborhoods during the COVID-19 pandemic, trusted their doctor as a primary source of health information. This is remarkable considering that trust is the foundation of the relationship between patients and clinicians but had recently declined among all groups over time. , Our patients valued communication, especially the importance of being able to contact someone in their doctor's office when questions arose. Although the difference did not rise to significance, higher overall communication scores were associated with higher trust. Additionally, the majority had had a virtual communication with their doctor. Compared with those patients with lower trust, the patients with stronger trust in their doctors found the virtual contact satisfying. The patients in this study had significant medical problems in addition to asthma (obesity, diabetes, and/or hypertension). They were older than those patients with asthma who were frequently studied, and they tended to be of low income and low educational attainment. These marginalized patients are not often studied, yet they have the most medical problems and need the most care. Thus, it is important to understand their relationship with health care providers and ensure that in-person, virtual, and phone visits take place as needed to ensure communication. It is reassuring that virtual communication provides satisfaction to even those patients with weaker trust. In this day of virtual communication, the telephone may remain an important mode of communication between patients and their doctors and doctors’ staff. We did not determine how many patients lacked cell phones or other means of virtual communication. Our analysis also tells clinicians that when in-person communication (ie, an appointment) is not possible, virtual communication may be helpful if it can be accomplished and may supplement in-person communication. Both types of communication are associated with stronger trust. This is important at a time when trust of medical and government services has been weakened by political events. We have learned that having virtual communication is important, and we speculate that it is perhaps more important for those with fewer communication options. This analysis also tells us that it is important for patients to have access to telemedicine communication but also for that phone access to be easy. Although we did not stratify by age, there could be a difference in preference (virtual communication versus a phone call) based on patients’ age. There are limitations to this analysis. First, the sample size is small, and the participants were not diverse; 87% were female, 90% were African American, and 57% were receiving Medicaid. Although not diverse, this is a very important group, as it is among those with the highest morbidity due to asthma and one that is rarely studied. This lack of diversity did not allow us to compare different racial/ethnic groups. However, studies have shown that when controlling for income and health factors (in other words, when addressing structural racism), the difference between races/ethnicities is reduced. , Our patients all had established relationships with physicians. Understanding the difficulties in communication and trust in patients who do not have such a relationship is necessary. For example, those who use only urgent care or emergency department facilities are a group that must be studied. Another limitation is that our question about sources of trust was incomplete. For example, we did not ask about trust of patients’ community and religious leaders (see Tables II, III, and V). Although all data collected by the researchers were confidential and the researchers collecting data had limited contact with clinicians, we cannot rule out the possibility that patients might have felt a need to please their clinicians in their responses to questionnaires about trust and communication. Finally, what we learned about asthma, trust, and communication goes well beyond experiences during the pandemic. We learned that patients with significant morbidity, difficulties with direct and indirect communication, and lack of an established relationship with a medical practice need to be studied further and that guidelines need to be adapted to them. A mixture of direct and virtual communication is very important for patients, especially for those with comorbidities and transportation limitations. Finally, we learned that patients trust their physicians, value their advice, and need to have accessible means of communication.

Receives support by the Patient-Centered Outcomes Research Institute (to A.J.A. and K.H.M.); the Heart, Lung, and Blood Institute of the National Institutes of Health (grant R01HL 143364 [to A.J.A.]); the National Institutes of Health (to T.B.-S. and A.JA.); and the Pennsylvania Department of Health (to T.B.-S.). Disclosure of potential conflict of interest: A. J. Apter is an associate editor of the Journal of Allergy and Clinical Immunology and a consultant for UpToDate. K. H. Morales owns stock in Altria Group, Inc, British American Tobacco PLC, Philip Morris International. The rest of the authors declare that they have no relevant conflicts of interest.Key messages • There is no single mode of communication (phone, e-mail, or text) that fits all patients at all times; therefore, clinicians should use multimodal techniques to communicate with patients to build a trusted relationship. • When patients are not able to reach their doctor’s office, it undermines trust in their clinicians. 