Telehealth Experience Among Liver and Kidney Transplant Recipients: A Mixed Methods Study

Abstract

Telehealth has become widely available to solid organ transplant (SOT) recipients during the COVID-19 pandemic. While evidence suggests that telehealth serves as an acceptable alternative for most SOT recipients, their satisfaction and its context remain unclear. This study used a mixed methods approach to investigate the perspectives of SOT recipients (i.e., liver, kidney, and simultaneous liver-kidney) on the benefits and disadvantages of telehealth. A total of 252 adult SOT recipients completed an online survey that quantitatively assessed telehealth experience and satisfaction. Fifteen of them further shared their perspectives by participating in either a focus group or individual interview. Approximately 70% of online survey participants had previously used telehealth for their transplant care. The quantitative data documented that, while recipients were mostly satisfied with telehealth, especially with its effectiveness and convenience, they were less satisfied with the reliability of navigating the telehealth system. The qualitative data further showed that telehealth could be less effective for SOT recipients who perceived themselves as clinically and/or socially vulnerable, needed urgent care, and were concerned about privacy. These findings suggest that the plan for using telehealth to provide transplant care should prioritize personalization, considering unique needs and preferences of each SOT recipient.

Graphical Abstract

Introduction

Telehealth refers to the delivery of healthcare, education, and support using telecommunications technologies, such as live videoconferencing [1]. Telehealth has been primarily used to support chronic disease care management that requires regular clinic visits, particularly for individuals living in rural areas [2]. Indeed, telehealth has shown to improve access by reducing travel time and costs [3] while advancing patient outcomes, such as better quality of life and decreased rehospitalization [4]. Despite such benefits, telehealth was not widely available before the COVID-19 pandemic due to multiple barriers, including interstate licensing restrictions, insurance coverage, and lack of infrastructure [5, 6]. The COVID-19 pandemic, however, encouraged many providers and insurers to embrace telehealth.

Solid organ transplant (SOT) recipients, such as liver, kidney, and simultaneous liver-kidney, are required to engage in lifelong care that involves taking immunosuppressants as prescribed and regular follow ups to maintain long-term transplant function. Telehealth has played a critical role in providing essential care for SOT recipients during the COVID-19 pandemic [7]. Telehealth appears to be an acceptable alternative for most SOT recipients. They reported comparable satisfaction to in-person visits with minimized burden of travel [8, 9]. While beneficial in many ways, however, disadvantages of telehealth may exist. Some types of care that require physical contact may not be feasible via telehealth [10]. Lack of technological literacy or reduced access to telecommunications infrastructure among SOT recipients may hinder the effective use of telehealth [9].

Understanding benefits and disadvantages of telehealth from SOT recipients’ perspectives could suggest ways to improve telehealth for them. An approach of continuous improvement is particularly critical because SOT recipients have reported their willingness to use telehealth for certain care services, including synchronous and asynchronous communication with their care providers [11]. While the existing literature has examined the experiences of SOT recipients in relation to transplant care delivered through telecommunications technologies [8, 12–15], evidence is insufficient to fully understand their experiences. Many studies assessed satisfaction of SOT recipients using questionnaires that have not been psychometrically tested [16, 17]. Further, there is a lack of studies employing a mixed method design, which holds the potential to provide a comprehensive understanding of the underlying context influencing their satisfaction. Addressing these gaps in knowledge may inform strategies to advance the telehealth experience among SOT recipients. Thus, this study aimed to understand perspectives of SOT recipients (i.e., liver, kidney, and simultaneous liver-kidney) on the benefits and disadvantages of telehealth.

Methods

A mixed method design was used to obtain holistic understanding of the perspectives of SOT recipients on telehealth. Quantitative data was collected through an online self-report survey and qualitative data was collected through focus groups and individual interviews.

Survey Design and Recruitment

Participants were recruited using paid Facebook advertisements between May and August 2021. A series of images and descriptions were used over time to improve the efficacy of the advertising. When a potential participant clicked on the advertisements, they were directed to the study page at Research Electronic Data Capture (REDCap) [18, 19]. Individuals were eligible to participate in the survey if they met the following criteria: (1) were aged 18 years old or greater; (2) had received a liver, kidney, or simultaneous liver-kidney transplant; and (3) were currently receiving care for their transplants at a transplant center located in the United States. Individuals who confirmed that they met all three of these criteria provided online informed consent and completed the survey at REDCap. A total of 876 individuals clicked on the advertisements, 653 were eligible to participate in the study, and 252 individuals completed the survey (response rate 38.6%).

Measures

All participants were asked if they had used telehealth for transplant care after the United States declared a national emergency due to the COVID-19 pandemic in March 2020. Participants who had not used telehealth were asked to provide reasons for not using telehealth. Those who had used telehealth (n = 180) completed a series of questions asking about the use of telehealth. These include types of telehealth, confidence in using telehealth, level of assistance needed to complete telehealth visits, and telehealth satisfaction. Telehealth satisfaction was assessed using the 21-item Telehealth Usability Questionnaire (TUQ), which has strong content validity in assessing the usability of telehealth service [20]. The TUQ has five subscales: usefulness, ease of use, effectiveness, reliability, and satisfaction. Usefulness measures how effective telehealth was at completing desired function. Ease of use determines how easy it was for a patient to complete their appointments and care using telehealth. Effectiveness measures the quality of interaction with clinicians compared to in-person appointments. Reliability measures how well the telehealth system’s online help and feedback was in guiding a patient to navigate the system or correct an error. Satisfaction measures how pleased a patient was with their experience overall. Participants were asked to rate their satisfaction with telehealth they received from their transplant center from 1 (strongly disagree) to 7 (strongly agree). With the TUQ developer’s consent, several items were adjusted to limit the scope of telehealth services provided for transplant care (Supplementary Table S1). Mean total and subscale scores were calculated if at least 75% of the items were answered. Higher scores indicate a greater sense of satisfaction with telehealth care provided. Cronbach’s α coefficients of the scores in this study ranged between 0.75 and 0.97. Demographic and clinical characteristics, such as types of organ transplant and time since transplant, were self-reported by all participants.

Focus Group and Interview Design and Recruitment

The survey included a question asking if the respondent would be interested in participating in a focus group discussion or interview. A total of 107 survey respondents indicated their willingness to participate and provided an email address. A study team member contacted all 107 respondents to schedule a call. Among them, 92 could not be contacted or withdrew from participation. A total of 15 participants provided online informed consent via REDCap that explained the purpose and procedure of the focus group.

We conducted two focus group discussions between November 2021 and February 2022, each involving four participants. The focus group was moderated by a trained study team member. The focus group moderator’s guide discussed the following topics: quality and connectedness in telehealth compared to in-person visits; participants’ ability to manage their medication and self-monitoring; benefits and challenges of using telehealth; confidentiality; suggestions to improve telehealth; and the pandemic’s influence on utilizing telehealth. The focus group moderator left time for probing, following up, and cross-talk between participants. Focus groups were held via a HIPAA compliant Zoom meeting (Zoom Video Communications, Inc. San Jose, CA) and lasted approximately 60 min. The focus group transcripts were transcribed verbatim and corrected by a study team member who had observed the proceedings.

We also conducted seven individual interviews with survey respondents who could not attend one of the scheduled focus group meetings. Consent and interview procedures matched what was done for the focus groups. Interviews lasted 10–30 min and were recorded and professionally transcribed. The study team member who conducted the interviews corrected the transcripts.

Pseudonyms were used during focus group discussions and individual interviews and in transcripts to protect participant confidentiality. A $30 gift card was given to participants who participated in a focus group or individual interview.

Data Analysis

We performed quantitative data analysis using IBM SPSS Statistics version 27 (IBM, Armonk, NY). Descriptive statistics were used to describe participant characteristics and scores for the study measures. Sociodemographic characteristics of telehealth users were compared to those of non-users using the Mann-Whitney U test and chi-square test. Associations between characteristics and TUQ scores were assessed using Spearman’s rho correlation and Kruskal-Wallis test. Post-hoc comparisons were conducted using Mann Whitney U test for statistically significant Kruskal-Wallis test results. The level of statistical significance was set at p < 0.05. While p values were not corrected for multiple tests given the exploratory nature of the study, Bonferroni corrected p values were used on post hoc pairwise comparisons.

We analyzed the qualitative transcripts following a hybrid inductive-deductive approach [21]. The moderator’s guide and the preliminary codebook we used to analyze transcripts reflected our understanding of the benefits and drawbacks of telehealth for this specific group of patients. We allowed new codes to emerge from the transcripts in response to concepts and themes introduced spontaneously by the focus group respondents, such as perception of risks.

We used NVivo version 12 to code all transcripts. The third author created a codebook that included 29 codes (organized into broad themes), a definition of each code, and representative quotations drawn from the transcripts. The team met to review the codebook and clarify the guidelines for applying codes. The third author then coded one focus group transcript. The team met again to review the coding, to determine if any new codes needed to be added to the codebook, and to review preliminary findings. Once the team reached agreement about codes, themes, and coding guidelines, the third author completed coding all transcripts.

Results

Quantitative Results

Participant Characteristics

Our full sample of 252 respondents included liver (n = 39, 15.7%), kidney (n = 198, 79.5%), and simultaneous liver-kidney (n = 12, 4.8%) transplant recipients (excluding three missing values, Table 1). Among them, 180 had used telehealth for transplant care. Their median age was 62.0 years (interquartile range [IQR], 55.0–68.0). Most telehealth users were White (87.6%), female (70.8%), and married (57.5%). The majority were either retired (34.1%) or on disability (33.0%) and most had public insurance (44.0%). The median time since receiving their transplant was 55 months (IQR, 22.5–127.5). The characteristics of telehealth non-users were not significantly different than telehealth users, except that telehealth users had higher levels of educational attainment compared to telehealth non-users (Table 1). Among the 72 nonusers, the primary reasons for not using telehealth included: a) telehealth not available at their transplant centers (23.1%), b) not comfortable with technology (16.9%), c) no interest in telehealth (15.4%), and d) no access to telehealth equipment or adequate internet or bandwidth (10.8%).

Telehealth Use

More than half of telehealth users had used multiple types of telehealth (55.3%), with real-time video visits being most common (79.4%; Supplementary Table S2). Over a third of users reported using telehealth for 81%–100% of their visits to their transplant centers over the past 12 months (36.9%). The majority of users rated themselves as very confident in communicating with their provider via telehealth (58.1%) and no assistance needed (87.8%), whereas some users were concerned about the effectiveness of telehealth (34.8%) or reported lack of familiarity or comfortability with the technology (21.2%). Only 13% of telehealth users reported being not likely to use telehealth for transplant care in the future (Supplementary Table S2).

Telehealth Satisfaction

The total TUQ scores (Table 2) indicated that transplant recipients were mostly satisfied with telehealth they received for transplant care (Median = 5.6, IQR = 4.5–6.3). The median score of the reliability subscale was the lowest, whereas the median score of the satisfaction subscale was the highest. Table 3 and Figure 1 summarize the statistically significant associations between participants’ characteristics and their telehealth satisfaction. Age and time since receiving transplants were inversely correlated with TUQ total and every subscale scores (r_s = −0.20–−0.29 and r_s = −0.16–−0.21; Table 3). Male recipients had significantly lower median scores in TUQ total and every subscale than female recipients (Figure 1). Recipients who were employed full- or part-time had a significantly higher median score in the TUQ usefulness subscale than those who were retired (Bonferroni-corrected p = 0.038; Figure 1). Finally, recipients who obtained some college credit or vocational training had significantly lower median scores in TUQ usefulness, ease of use, and satisfaction subscales than those who had a Bachelor's degree (Bonferroni-corrected p = 0.034, 0.049, and 0.017, respectively; Figure 1).

FIGURE 1

Qualitative Results

Benefits of Telehealth

As illustrated in Table 4, focus group participants and interviewees praised the quality and benefits of telehealth. The most frequently mentioned benefit was efficiency, followed by convenience, communication, and affectability. Participants frequently spoke about their satisfaction with telehealth and its benefits not only for managing their transplant recovery but also for other medical care.

Efficiency

Participants repeatedly described their telehealth experience as “seamless.” Many of them noted that it was easier to schedule telehealth appointments with their providers, how smoothly the appointments went, and that the appointments were faster or quicker than an office visit (in part because they and their providers experienced fewer distractions or interruptions during the call).

Convenience

Participants frequently listed convenience when we asked them to name the benefits of telehealth. Participants described the convenience of taking their telehealth appointment at any location of their choosing. In addition to talking about joining the appointments at home, participants talked about joining an appointment at work, in their car, or even outside in a field. Participants saw telehealth as particularly beneficial for individuals who might be homebound or are unlikely to seek care. They repeatedly mentioned how they benefitted from telehealth by saving travel time. For example, one respondent reported that a trip to their provider was at least 45 min one way, while another participant was traveling across states for their in-person healthcare, which required days. Another participant, who is blind, said that they found telehealth more convenient because they would not need to arrange travel assistance.

Communication

Similar to previous elements, participants spoke positively about the effectiveness and comprehensiveness of their telehealth appointments. Their experiences commonly included mentions of their providers answering all of their questions and communicating in a timely fashion. In most cases, the patients stated that telehealth is especially well suited for visits that are a simple review of lab results or for regular check-in appointments.

Affectability

The emotional effects that participants described were mostly positive when talking about the benefits of telehealth. For example, they reported lower levels of stress and anxiety and better moods. Some of this is closely related to the findings described above about convenience; participants said that needing to re-arrange work schedules was troublesome. Finally, some participants said that reviewing lab results could be a stressful part of an appointment, and that being able to reduce some of the stressors (e.g., travel time) allowed them to focus on the content of the conversation.

Drawbacks of Telehealth

As illustrated in Table 5, participants identified several drawbacks of telehealth and instances where they perceived it to be riskier than in-person appointments. The most common risk mentioned was perceived clinical vulnerability, followed by urgency, social vulnerability, and privacy.

Perceived Clinical Vulnerability

Participants’ comments about the risks associated with the drawbacks of telehealth most frequently touched on their perceived clinical vulnerability as an SOT recipient. In general, participants pointed out that the utilization of telehealth depended on how well they were doing or what issues were present. Their perception of their vulnerability was constantly present due to the second chance that they were given through the transplant. They were aware that their status could change and that their preference for telehealth versus in-person appointments might change in concert with their status. As one participant pointed out, “there is not a manual” for living with an SOT, and some other participants said that in-person appointments helped them to be confident of their recovery progress. Additionally, a few participants shared concerns about the possibility of clinical errors or that something important would be missed.

Urgency

Participants noted that telehealth may not be optimal if a problem surfaces in their lab results and they need to be readmitted urgently. If such a visit happened over telehealth, it would still require travel to the hospital or transplant center, thus negating the benefit of telehealth.

Social Vulnerability

A participant shared their personal condition of blindness and lamented that their provider’s telehealth videoconferencing platform was not accessible and they had to instead utilize a phone call. Another participant shared a personal need to be in person to adequately process the information from their providers. That experience was not as largely shared by the other participants, but it illuminated a potential subset of people who might need in-person care instead of telehealth to manage transplants. A few participants surmised that elderly patients might be less likely to be “tech savvy,” although technological literacy was not a barrier reported among our participants.

Privacy

Perhaps surprisingly, when we asked participants if they had concerns about confidentiality, most said they had not considered this as a potential risk. Even when asked directly about it, they were not concerned about breaches of confidentiality, either on the provider’s side or on their end (i.e., being overhead by a family member or co-worker). One participant acknowledged the potential risk of losing privacy but believed that the benefits of telehealth outweighed it. Finally, one participant, although not concerned before considering the question, became more concerned and stated they needed to find out the privacy protections for their telehealth.

Connectedness

Finally, there is some evidence in the transcripts that feelings about telehealth varied among participants, depending on the length of time that had passed since their transplant (Table 6). Most interviewees and focus group participants had received their transplant less than 8 years before the pandemic. But there were a couple of participants who had lived with their SOT for decades. Their reports suggest that telehealth might disrupt their relationship with the provider, which they had cultivated over many years. These people mentioned that they had “good” or “easy” rapport with their providers, which in some ways made the shift to telehealth less awkward.

Despite these generally positive remarks about telehealth, some of these long-term SOT recipients gave several reasons why they nevertheless prefer in-person care. First, they commented that they had received many years of support not only from interdisciplinary transplant team members but from everyone in the transplant center (e.g., receptionists, nursing assistants), and that using telehealth disrupted those connections, which they had established throughout their long recovery. One participant, whose travel to appointments is about 4 hours, said that they viewed these staff members as part of their care team, and that they missed those interactions over telehealth.

Among participants who had had their transplant more recently, some expressed a preference for in-person care, as a means of getting to know their providers and establishing trust. They also spoke about the “chemistry” that can be established when you sit in front of someone and its absence when the appointment is through telehealth. Conversely, the minimization of interruptions and distractions in the telehealth environment could facilitate better connection.

Discussion

Telehealth has been beneficial for SOT recipients during the pandemic, by minimizing the risk of contracting COVID-19. However, there is a lack of knowledge regarding how satisfied SOT recipients are with their transplant care delivered by telehealth. SOT recipients in this study were mostly satisfied with telehealth, particularly appreciating its efficiency and convenience. Yet, they also expressed concerns that telehealth may not work for everyone.

SOT recipients rated telehealth very highly in its effectiveness to provide comparable quality of care to in-person visits, consistent with previous literature [22, 23]. Particularly, telehealth seems to be a great option for employed recipients compared to retirees due to its convenience and ability to save time and money by reducing the number of trips to their transplant centers. SOT recipients also found telehealth provides a seamless appointment experience while enhancing communication with transplant care providers. They appreciated that they could receive care anywhere that is convenient for them.

This study also, however, suggests that telehealth may not be suitable for all SOT recipients, illustrating the importance of adopting a personalized approach for post-transplant care, based on the patient’s needs and preferences. As demonstrated in previous literature [9, 23], this study identified limited technical capability, lack of online communication skills, and physical disabilities, such as blindness, were possible barriers preventing SOT recipients from the successful use of telehealth. Furthermore, telehealth may not be an ideal care delivery method if recipients perceive their health status as poor. In our study, a small minority of interviewees expressed concern about the limitations of telehealth, including inability to perform physical examination or provide proper care when urgently needed.

Perhaps paradoxically, our study found that patients who had lived with an SOT for decades were most skeptical about the benefits of telehealth, largely because they felt it disrupted a sense of connectedness with transplant care providers, which is crucial to managing a SOT successfully [24, 25]. Established relationships between a patient and healthcare provider facilitates the use of telehealth. Its long-term use, however, may decrease the level of connectedness between patients and providers [9, 26]. Our quantitative and qualitative findings suggest lower satisfaction with telehealth among SOT recipients who undergone SOT a longer time ago; this may indicate that telehealth erodes the sense of connectedness that SOT patients have, not only with their provider, but with all the members of the care team. SOT recipients who have long-lasting, trusted relationships with their transplant care providers may prefer in-person visits over telehealth to maintain such relationships [9, 26]. Further research is needed to identify potential strategies to help establish or maintain the sense of connectedness while providing transplant care via telehealth.

Privacy is one of the common concern individuals may raise when using telehealth [9, 11]. Interestingly, SOT recipients in this study seemed less concerned about privacy. While this finding may indicate their acceptance of telehealth, it may suggest a lack of awareness among recipients about the potential risks of confidentiality breach. For example, our interviewees were relatively unconcerned about the likelihood of a breach on the provider’s side, and none of them seemed concerned that someone in their home or workplace may overhear their conversations. Efforts to broaden use of telehealth should take equity into consideration, since it may not be possible for all recipients to find private space to complete telehealth visits at home or workplace [9, 13]. Moreover, these interviews asked patients about their experience of telehealth during a pandemic and quarantine, and some patients may have considered questions about confidentiality or privacy moot in that circumstance. As healthcare operations return to normal, further research is needed to better understand how SOT recipients perceive the relative risks and benefits of confidentiality and privacy.

A few potential limitations of this study should be noted. While online recruitment offers advantages such as higher participant numbers at a reduced cost compared to traditional methods [27, 28], the small sample recruited online may not represent the broader SOT population. Consequently, the generalizability of the study findings might be limited. Moreover, it should be acknowledged that participants independently assessed their eligibility for participation, but we did not use any validation procedures to evaluate the accuracy of their self-assessment. Finally, the observed correlations do not indicate cause and effect due to the cross-sectional nature of the study.

In conclusion, while SOT recipients readily accepted telehealth during the pandemic, telehealth may not be suitable for all recipients. Clinicians should prioritize assessing a SOT recipient’s needs and preferences when developing a patient-centered transplant care plan. Further research is needed to develop strategies to address potential drawbacks of telehealth.

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