Abstract
Rationale & Objective
In the wake of the coronavirus disease 2019 (COVID-19) pandemic, the United States federal government expanded originating telemedicine sites to include outpatient dialysis units. For the first time, nephrology practitioners across the United States could replace face-to-face visits with telemedicine for patients receiving in-center hemodialysis. This study describes patients’ perspectives on the use of telemedicine during in-center hemodialysis.
Study Design
A qualitative study.
Setting & Participants
Thirty-two patients from underserved populations (older, less educated, unemployed, persons of color) receiving in-center hemodialysis who used telemedicine with their nephrologist during the COVID-19 pandemic.
Analytical Approach
Telephone semistructured interviews were conducted in English or Spanish. Transcripts were thematically analyzed.
Results
We identified 6 themes with subthemes: adapting to telemedicine (gaining familiarity and confidence, overcoming and resolving technical difficulties, and relying on staff for communication); ensuring availability of the physician (enabling an immediate response to urgent medical needs, providing peace of mind, addressing patient needs adequately, and enhanced attention and contact from physicians); safeguarding against infection (limiting COVID-19 exposures and decreasing use); straining communication and physical interactions (loss of personalized touch, limited physical examination, and unable to reapproach physicians about forgotten issues); maintaining privacy (enhancing privacy and projecting voice enables others to hear); and supporting confidence in telemedicine (requiring established rapport with physicians, clinical stabilty of health, and ability to have in-person visits when necessary).
Limitations
Interviews were conducted later in the pandemic when some nephrology care providers were using telemedicine infrequently.
Conclusions
Patients receiving in-center hemodialysis adapted to telemedicine visits by their nephrologists in the context of the COVID-19 pandemic and observed its benefits. However, further considerations regarding communication, privacy, and physical assessments are necessary. Integrating telemedicine into future in-center hemodialysis care using a hybrid approach could potentially build trust, optimize communication, and augment care.
Index Words: Hemodialysis, qualitative interviews, telemedicine
Plain-Language Summary
This study describes patients’ perspectives on the use of telemedicine while receiving in-center hemodialysis during the coronavirus disease 2019 (COVID-19) pandemic. Data are derived from semistructured interviews with thirty-two patients from underserved populations (older, less educated, unemployed, persons of color). We identified 6 major themes including adapting to telemedicine, ensuring availability of the physicians, safeguarding against infection, straining communication and physical interactions, maintaining privacy, and supporting confidence in telemedicine. These findings suggest that patients receiving in-center hemodialysis adapted to telemedicine visits by their nephrologists in the context of the COVID-19 pandemic and observed its benefits. However, further considerations regarding communication, privacy, and physical assessments are necessary. Integrating telemedicine into future in-center hemodialysis care using a hybrid approach could potentially build trust, optimize communication, and augment care.
To prevent the spread of SARS-CoV-2 while maintaining access to care, the Centers for Medicare and Medicaid Services issued emergency waivers starting in March 2020 to facilitate the use of telemedicine. These waivers lifted geographic restrictions and expanded originating telemedicine sites to include the home and outpatient dialysis units.1, 2, 3 Nephrology practitioners in the United States replaced face-to-face visits with patients receiving in-center hemodialysis with telemedicine—many for the first time.4
Small pilot programs assessing the feasibility of telemedicine for in-center hemodialysis care have found that, despite technical difficulties, patient-reported outcomes were either similar or improved compared with in-person care.5, 6, 7, 8 In a United States survey of patients using telemedicine while having in-center hemodialysis during the COVID-19 pandemic, most patients reported satisfaction seeing their nephrologist using telemedicine.9 Yet, qualitative analyses of patients with kidney disease who were not receiving hemodialysis suggest more varied experiences with telemedicine with patients reflecting on its strengths and limitations.10,11 Thus, more in-depth (ie, qualitative) perspectives of patients receiving in-center hemodialysis on telemedicine remain unknown.
Federal waivers allowing telemedicine for in-center hemodialysis expired on May 11, 2023; following a temporary extension period, telemedicine for in-center hemodialysis will no longer be reimbursed after December 31, 2024.12, 13, 14 Although several federal laws have been introduced to make aspects of telemedicine waivers permanent, none have explicitly addressed in-center hemodialysis.15, 16, 17 As clinicians and policymakers consider the future role of telemedicine for in-center hemodialysis, it is important to understand patient experiences. This is particularly true for underserved populations (eg, older, less educated, unemployed, persons of color, rurally located, etc.) who comprise a disproportionately higher share of patients receiving hemodialysis and who may experience unique challenges with the use of telemedicine.18,19 In the current study, we describe underserved patients’ perspectives and experiences with telemedicine for nephrology care during in-center hemodialysis.
Methods
We report this study using the Consolidated Criteria for Reporting Qualitative Health Research (COREQ).20
Participant Recruitment and Selection
Eligibility criteria included adults (aged 18 or older) who participated in telemedicine appointments for in-center hemodialysis after the start of the COVID-19 pandemic (March 2020). Using convenience sampling, we recruited participants by providing local physicians and dialysis facility nursing staff with flyers to share with their patients. These flyers informed patients of the study. Interested patients called our research team who then determined their eligibility. All recruitment occurred in a large metropolitan area in the southwestern United States. Participants were included in the study if they could speak either English or Spanish; 2 research assistants and 1 interviewer were fluent in Spanish. Recruitment and interviews occurred between February and November 2022. Study activities were approved by a Baylor College of Medicine Institutional Review Board (protocol H-48994).
Data Collection
We developed a semistructured interview guide from extant literature and discussion among the research team attuned to issues related to policymaking (Item S1). Interview domains included patients’ experiences, processes, benefits, challenges, and the future of telemedicine for in-center hemodialysis care. Two interviewers, including a qualitative methodologist (TMH) with a decade of qualitative research experience and a nephrologist (KFE), conducted interviews among all English-speaking participants. Spanish-speaking participants were interviewed by another nephrologist. Interviews generally lasted <30 minutes. Interviews were conducted by telephone, audio-recorded, and transcribed. Spanish interviews (n = 6) were translated before transcription. Neither nephrologist was involved in the direct care of patients and neither nephrologists was known to participants before interviews.
Data Analysis
We coded transcripts using an iterative process and following thematic analysis.21 Data collection, recruitment and analyses overlapped. The sample size was determined based on data saturation. This occurred when we stopped identifying new information from interviews and thus concluded data collection.
We coded transcripts using Atlas.ti web (v5.13.0-2023-08-25).21 To create the initial codebook, 2 coders (TMH, KFE) inductively identified a range of participant experiences. We further developed the codebook until we reached agreement for a final version. Two coders reviewed each transcript and then grouped concepts into themes and subthemes. This form of investigator triangulation ensured that we captured the full breadth and depth of data in the analysis.
Results
Thirty-two patients participated in interviews. See Table 1 for demographic and self-reported clinical characteristics. Though we did not intentionally recruit patients considered underserved, our sample reflects the heterogeneity of the large, diverse metropolitan area from which we recruited. Participants were majority female (56%) and Black (66%); about one-third were Hispanic (28%). Patients tended to be older (50s [31%] or 60s [38%]), with lower educational attainment (85% had a high school degree or lower), single (53%), and unemployed (59%; excluding retired or disabled). Approximately one-third of participants had a caregiver (28%). Few had difficulty hearing or communicating (9%). Patients commonly reported diabetes (38%) or hypertension (59%) as causes of their kidney disease.
Table 1.
Participant Demographic and Self-Reported Clinical Characteristics (N = 32)
| Characteristic | n (%) | Characteristic | n (%) |
|---|---|---|---|
| Sex | Highest education | ||
| Male | 14 (44) | Less than high school | 7 (22) |
| Female | 18 (56) | High school/GED | 20 (63) |
| Age category, y | College degree or more | 5 (16) | |
| 30s | 2 (6) | Employment status | |
| 40s | 6 (19) | Full time | 1 (3) |
| 50s | 10 (31) | Part-time | 2 (6) |
| 60s | 12 (38) | Retired | 6 (19) |
| 70s | 1 (3) | Disabled | 4 (13) |
| 80s | 1 (3) | Not employed or other | 19 (59) |
| Race | Interview language | ||
| White | 5 (16) | English | 26 (81) |
| Black | 21 (66) | Spanish | 6 (18) |
| Asian | 1 (3) | Has a caregiver | 9 (28) |
| Mixed | 2 (6) | Cause/type of Kidney Diseasea | |
| Other | 1 (3) | Diabetes | 12 (38) |
| No answer | 2 (6) | Hypertension | 19 (59) |
| Ethnicity | Other/unknown | 11 (34) | |
| Hispanic | 9 (28) | Difficulty hearing or communicating | 3 (9) |
| Relationship status | Other medical or psychiatric conditionsb | ||
| Single | 17 (53) | Cardiac disease | 1 (3) |
| Married | 4 (13) | Stroke | 3 (9) |
| Widowed | 4 (13) | Arrhythmia | 1 (3) |
| Separated/divorced | 6 (19) | Cancer | 2 (6) |
| Cohabitating | 1 (3) | Depression/anxiety | 6 (19) |
Notes: Percentages may not add up to 100% because of rounding and the potential for multiple selections.
Patients could report more than one cause of kidney disease.
Open-ended question where patients could report multiple.
We identified 6 themes and respective subthemes described below. We provide further support in Table 2 and Table S2. We refer to participants using pseudonyms. Participants used “telemedicine” interchangeably with “telehealth” and referred to telemedicine using a variety of terms (eg, Telecheck, teleconference, FaceTime, etc.).
Table 2.
Themes and Exemplar Quotes
| Theme 1: Adapting to Telemedicine | Subtheme |
| “When it started, I was surprised because I had not had an experience with that. But then … it was easier to adjust to the visits because you understood what was going on.” (Victoria, 60s, Black) | Gaining familiarity and confidence |
| “Sometimes for some reason, but very rarely, the image froze, and our connection was cut off. But … that’s just technology and you do run that risk.” (Valentina, 50s, Hispanic)a | Overcoming & resolving technical difficulties |
| “With patients who only speak Spanish, normally, there’d almost always be a nurse there who spoke Spanish and she’s the one who translated.” (Valentina, 50s, Hispanic)a | Relying on staff for communication |
| Theme 2: Ensuring Availability of the Physician | |
| “If you need to like get another prescription or something like that, the doctor can go ahead and take care of that right then and there or whatever. So, it’s very convenient.” (Levi, 60s, Black) | Enabling an immediate response to urgent medical needs |
| “It works good because I can always just get in touch with her, and then I just tell them, and they just call her up and I’m able to talk to her as if I went into the doctor’s office.” (Maeve, 60s, Black) | Providing peace of mind |
| “In a video call, I felt her—the doctor—like she was there with me. Everything was the same, if I had a concern, I immediately consulted her, and she already gave me the answer.” (Lola, 60s, Hispanic) | Addressing patient needs adequately |
| Theme 3: Protecting/Safeguarding Against Infection | |
| “[During the pandemic] they were very interested in ensuring that we didn’t get sick, that we were constantly on dialysis, that we didn’t miss out.” (Mariana, 40s, Black) | Limiting exposure to COVID-19 |
| “[D]uring the pandemic [telemedicine] was kind of frequently. You know, once a week during the pandemic … But now he comes in more back to normal.” (Barbara, 60s, Black) | Decreasing use with reduced risk of COVID-19 |
| Theme 4: Straining Communication & Physical Interactions | |
| “You see them and you're talking to 'em [on telemedicine] but it’s just not quite the same as if a person is standing there in front of you and you're talking. Before COVID, you know, we’d shake hands, but now we don’t. It’s just that personal touch.” (Doris, 70s, Black) | Loss of personalized approach |
| “Because I forget something, and then if he’s there … I can ask him to come back. But with telehealth, once he off the phone, he off the phone.” (Veronica 40s, Black) | Unable to re-approach physicians about forgotten issues |
| Theme 5: Maintaining Privacy | |
| “The one on the phone was a little bit more comfortable … because the phone is right close to you.” (Lucy, 50s, Black) | Opportunities to enhance privacy |
| “The person next to you can hear you just like if you on the phone talking to any other person. But if your doctor is there, you can ask him to come a little closer.” (Veronica, 40s, Black) | Projecting voice enables others to hear |
| Theme 6: Supporting Confidence in Telemedicine | |
| “[If I were to change doctors,] I think I’d have to develop a strong relationship with him first before I could have a strong telehealth visit with him.” (Doris, 70s, Black) | Requiring established rapport with physicians |
| Interviewer: “Do you regularly wish that he was there to examine you in person?” Doris: “Only if I’m having a situation where I think that he should be there to take a closer look at me and see what’s going on with me.” (Doris, 70s, Black) | Clinical stability of health |
| “I think it would be just like having money on hand—if you need it, you can put your hands on it. [laughter] Like, if you need your doctor right then you can call him.” (Martin, 60s, Black) | Ability to have in-person visits when necessary |
Notes: We refer to patients using pseudonyms. The term “telemedicine” is used interchangeably with “telehealth.”
Translated from Spanish.
Theme 1: Adapting to Telemedicine
Gaining Familiarity and Confidence
Some patients felt they needed time to become used to communicating with their physician through telemedicine given the new technology. Patients had not used telemedicine for in-center hemodialysis previously, but some had used telemedicine in other medical settings. With the onset of the COVID-19 pandemic, telemedicine for in-center hemodialysis occurred by video with audio or audio only, often on a tablet device provided with assistance by the dialysis facility and managed by facility staff. Participants reported that physicians addressed routine talking points (eg, asking how dialysis is going) and specific issues (eg, blood pressure and laboratory test abnormalities).
Overcoming and Resolving Technical Difficulties
Participants rarely recalled technological challenges when using telemedicine for their in-center hemodialysis treatments. When technical issues did occur, patients mentioned dialysis facility staff assisted and initiated telemedicine visits to preemptively reduce technical issues.
Relying on Staff for Communication
Participants explained how they relied on ancillary dialysis facility staff to help with communication during telemedicine visits and to relay questions, concerns, and information to the physician. Some patients felt telemedicine was “killing two birds with one stone” (Lucy, 50s, Black) because they could speak with clinicians using telemedicine during a dialysis session. Lucy continued, “I mean you’re right there getting your dialysis; you can sit there and talk. ... And if you have any problems, you can let the [nurse] know, and [my doctor will] just call the prescription in. If you have any concerns, he’ll let her know.” Spanish-speaking participants valued assistance from bilingual staff, particularly. As Valentina (50s, Hispanic) experienced (Table 2) and Barbara (60s, Black) noticed, nurses would “help other patients, especially the Spanish-speaking patients, translate for the doctor.”
Theme 2: Ensuring Availability of the Physician
Enabling Immediate Responses to Urgent Medical Needs
Patients reported receiving telemedicine as a way for their physician to respond to specific, time-sensitive medical needs, such as high blood pressure, problems during dialysis, or medication refills, which provided reassurance. In one such situation, Martin (60s, Black) recalled how, “if you need your doctor right then you can, you know, you can FaceTime him or call him.” Valentina remarked how, “I felt good because … he took the time to return my call and have a consult with me.” Telemedicine enabled this immediate connection between patient and provider to address such needs.
Providing Peace of Mind
Patients reported comfort and peace of mind knowing their physician was available at any time through telemedicine. Lola (60s, Hispanic) commented how, “If we needed something, and she couldn’t get to the center, we were still communicating by video call.” Mia (40s, Hispanic) agreed, “[telemedicine] gives you an advantage to be able to communicate with your dialysis doctor when necessary.” They felt telemedicine facilitated doctors’ abilities to assuage concerns and answer questions.
Addressing Patient Needs Adequately
Many participants reported receiving similar time and attention to problems and concerns from their physician with telemedicine compared with in-person encounters. Levi (60s, Black) relayed how “[telemedicine visits] are as long as you want them to be … and really get to the issues that’s really bothering you. It’s more efficient with them using [telemedicine]. You get the same thing accomplished because you’re actually talking to the doctor.” Participants reported visits were generally brief in both settings. Although length of visits varied, patients felt their providers addressed their needs.
Enhanced Attention and Contact From Physicians
One patient reported the physician being more attentive with telemedicine, highlighting benefits of “eye-to-eye” contact. From Jerry’s (40s, Black) perspective, “it made me feel like he was right here talking to me though he wasn’t here. I felt better communication and understanding of what he was trying to tell me and what I needed to do.” Calling telemedicine “unique,” Jerry joked how, “I was able to look him in his eye and see was he lying or not. He was able to look me in my eyes and see was I lying.” Levi also felt telemedicine was “more personal” because “you just have more comfort talking to a doctor on telemedicine than you do in person. So, to me it was very, very personable. And as far as I’m concerned, I like that better.”
Others noted that telemedicine enabled physicians to maintain regular contact even when they would otherwise be too busy to come into the clinic in-person. Lucy appreciated the effort, acknowledging doctors’ busy schedules and how her doctor was “still trying to reach out and see what was going on and did we need anything.” Lola considered this an “advantage” because she never stopped communicating with her doctors, “If we needed something, and [my doctor] couldn't get to the center, we were still communicating by video call.” Likewise, Rosa (60s, Hispanic) thought “the important thing is to be able to talk about what I felt and everything, even if it was via telehealth.” Thus, constant communication helped facilitate doctor-patient relationships and telemedicine.
Theme 3: Protecting/Safeguarding Against Infection
Limiting Exposure to COVID-19
Participants understood safety concerns related to the spread of COVID-19 as a primary reason for the use of telemedicine by their nephrologist. Some felt telemedicine provided them the opportunity to continue to receive care and communicate with their nephrologists throughout the pandemic. Lola imagined a situation in which telemedicine was not available during the pandemic and was grateful for the opportunity to continue her dialysis care because “imagine, if you felt unwell there in the dialysis clinic and the doctor wasn’t there, and if there was no video call—how would we communicate with her? We[’d] continue with our discomfort.” Being able to see and engage with their doctors was key to continuing care, particularly during the pandemic-related social and physical distancing.
Decreasing Use With Reduced Risk of COVID-19
As the height of the COVID-19 pandemic “went down” (Jerry) some participants noted that physicians stopped using telemedicine as frequently, “now he comes in more [in person], back to normal” (Barbara). Patients reported some nephrologists continued to use telemedicine variably with in-person visits.
Theme 4: Straining Communication and Physical Interactions
Loss of Personalized Approach
Some patients reported more personable encounters in-person, noting a lack of “hands on” and “personal touch” with telemedicine. Ana (50s, Hispanic) also felt physicians were in a hurry to move on to the next patient during telemedicine, whereas in-person she feels more comfortable “with him sitting there and I can explain my situation to him.” In person, some patients felt interaction was “more sincere” (Veronica, 40s, Black) and that they were “more trusting” of their doctors (Mia). Adding to his comment that it “feels a little weird” engaging with the doctor over telemedicine, Linh (30s, Asian) observed that with “face-to-face, you can joke around.”
Limited Physical Examination
Patients noted physicians were unable to examine them fully using telemedicine. For example, Barbara expressed how during the pandemic, she had “shortness of breath during COVID, a whole lot of weakness. … In telehealth, they can’t listen to your lungs or your heart. You can just only explain to them.” Marissa (80s, Black) explained how telemedicine “covers everything except for hands on. That’s the only difference. But if it’s not an instance where you need hands on, it’s great.” Patients generally did not feel this limitation affected the care they received but described circumstances when they would want their physician to see them in-person.
Unable to Reapproach Physicians About Forgotten Issues
Some patients liked in-person visits better because “if you need something else you can just walk up to your doctor and hey, ‘blah blah blah,’ versus on the video call when the guy holding the iPad leaves, it feels like the doctor is not much available anymore” (Linh). Agreeing, Amy (50s, Black) noted that “once they hang up, this day is a wrap,” and added how she “can remember better when he’s in-person” because she feels she has more time with her doctor. Indeed, having the time to think about questions while physicians continue their rounds in-person offers the chance to call them back over to talk.
Theme 5: Maintaining Privacy
Opportunities to Enhance Privacy
When discussing sensitive topics with their physician, patients discussed concerns about a lack of privacy in the dialysis center. Robert (60s, Black) expressed concern over “nosy” neighbors next to him. Realizing her appointment would be via telemedicine, Veronica would often cut the visit short and go back to sleep because, “I didn’t want to discuss anything because I got one [person] to the left and one to the right, and one in front of me. But when you in-person, ain’t nobody but me and [my doctor].” Not all patients shared this discomfort, however.
By contrast, several patients reported more privacy with telemedicine. Lucy was “fine” with the privacy of telemedicine “because they bring the phone right close to you.” Otherwise, patients were not bothered by concerns about privacy for either in-person or telemedicine visits. They noted that these encounters are not particularly personal in either case. The routine nature of visits contributed to their lack of concern about privacy given that their nephrologists ask similar questions each time.
Projecting Voice Enables Others to Hear
In relation to privacy, patients reported needing to speak louder on telemedicine devices, making it more likely that others could hear them. Eleanor (50s, Black) commented how “you really don’t want to talk because if something’s personal, you don’t want everybody to hear it. At least if she[is] right there [in-person], you can like kind of whisper it to her.” Veronica explained how she must “project” so her physician can hear her with the downside that “not only can the doctor hear you, but everybody else can hear you.” To address this issue, patients would whisper, ask the doctor to come closer, call the doctor separately, or avoid asking questions altogether.
Theme 6: Supporting Confidence in Telemedicine
Requiring Established Rapport With Physicians
Established trust and a strong existing relationship with their clinician made patients feel comfortable seeing their physician via telemedicine. Maeve (60s, Black) spoke to the importance of how her relationship with her doctor made telemedicine work because “I trust her, you know? She’s getting in touch with me, and I know what’s going on, and she'll give me the right answer. … It’s just something about looking at her and talking to her whether she’s there or not. I trust her.” Developing a bond like Maeve’s can take time, however. Doris (70s, Black) described how her nephrologist had helped her over the years and through multiple illnesses which contributed to her comfort using telemedicine. Without an existing bond, some patients were concerned that seeing a new physician via telemedicine would be a challenge. Among Spanish-speaking patients like Rosa, being able to communicate in their preferred language was especially “important” and “fulfilling” after frustrations of getting “stuck” on words in English.
Clinical Stability of Health
Some patients felt telemedicine visits worked well because they did not have significant health issues. It was just as easy to discuss routine dialysis-related topics using telemedicine than in-person. Describing his health as “not really that complicated,” Thomas (40s, mixed race) expressed indifference about which modality he saw his doctor, “If she’s there [in person] or if she’s on [telemedicine], I’m glad to see her.” Victoria (60s, Black) reported, “as for me, you know, it’s just a follow up to see if ‘I noticed this on your labs and is that true? And has it changed or what has happened’ and that’s it.” Patients were mostly concerned about seeing their doctor when there were changes in their health because “the only thing they ask is if there’s a change. ... So, it’s kind of like they don’t see you no more until changes are back” (Harry, 50s, Black).
Under other circumstances, patients preferred face-to-face visits. Doris noted that “kidney patients sometimes get short of breath and heart situations. But if the doctor’s there with you, he can examine you and make recommendation, but he would have to tell someone else to do the recommendation if he’s not there.” Doris went on to say that if she had a “situation” she would then want to see the nephrologist in-person. Put simply, if patients felt clinically stable, they did not perceive the need to meet with their kidney doctor.
In-Person Visits When Necessary
Many patients valued a combination of telemedicine and in-person visits because they ensure continued communication. While some issues required “hands on” evaluations as in Doris’s above experience, others’ mild concerns could be addressed over telemedicine. To this end, Levi appreciated the “convenience” of telemedicine because “it’s almost like them being right there in person... if you need to get another prescription, the doctor can take care of that.” Telemedicine thus met many patients’ needs; in their minds, in-person visits were unnecessary and could be replaced by telemedicine in some cases.
When asked to consider the future role of telemedicine for in-center hemodialysis, some patients supported its continued use while others preferred to return to all in-person care (Table 3).
Table 3.
Consideration of the Future of Telemedicine for In-Center Hemodialysis
| Continued role for telemedicine in the future: Because of enhanced availability and the sense that telemedicine addressed key concerns, some patients saw telemedicine having a significant a role in in-center hemodialysis care moving forward. |
| Interviewer: “Would you rather have in person visits?” Harry: “No. [laughter] I don’t see the point. … I like [telehealth], it just fits me perfect. He calls me in the middle of dialysis, that is absolutely perfect because it’s either that or I’m watching TV, so I don’t mind doing that.” (Harry, 50, Black) |
| “I think that was something that was of great benefit to a lot of people. You know, I’m really glad that the staff and the different people came up with the kind of idea to benefit the patient.” (Henry, 50s, Black) |
| “I think some of the advantages would be you could have visits more often if you need to because you can use telehealth at any time.” (Doris, 70s, Black) |
| “I think [telehealth] gives dialysis a good credibility record that they take the time to get that venue for the patient, that, you know, they allow us to [use telehealth] with our doctor, which is a great convenience for the patient. ... I think that’s a great, great tool. But I mean, I think it’s a great tool for any entity.” (Martin, 60s, Black) |
| Limited role for telemedicine in the future: Not all patients were enthusiastic about telemedicine for their in-center hemodialysis visits often because of the newness of the technology and perceived lack of connection with their nephrologists. |
| “I don’t really like it over the phone. I ain’t with all the new technology, but I go along with it. I’m just old-fashioned. I like being in person. I can see them, and talk with them, and tell them how I feel. telehealth is just somebody that make me a little nervous.” (Robert, 60s, Black) |
| “I don’t like it... I would rather feel comfortable with him sitting there and I can explain my situation to him. … I wish we could go back to the way we were.” (Ana, 50s, Hispanic) |
| “If I felt bad, I don’t feel like it’s of any use at all to just call on video if the doctor’s not going to be here. So, for me, I’d prefer it to be in person.” (Isabella, 30s, Mixed-Hispanic)a |
Notes: We refer to patients using pseudonyms. The term “telemedicine” is used interchangeably with “telehealth.”
Translated from Spanish.
Discussion
Our analysis of patient experiences with telemedicine identified key themes that were meaningful to patients, including adapting to telemedicine, ensuring availability of the physicians, safeguarding against infection, straining communication and physical interactions, maintaining privacy, and supporting confidence in telemedicine. Consideration of patients’ input can inform how telemedicine should be integrated into future in-center hemodialysis care.
Positive experiences with telemedicine suggest how telemedicine can be used to improve hemodialysis care in the future. For instance, participants valued telemedicine as a way to limit exposure to COVID-19. In addition to respiratory illness, dialysis facilities can encounter outbreaks of other infectious illnesses, such as Clostridium difficile infection and hepatitis.22,23 In response to these outbreaks, telemedicine could be used to limit the spread of infection by clinicians who must round on multiple patients. Participants also valued telemedicine as a way to help their clinicians immediately respond to urgent medical needs when specific issues arose. In the future, telemedicine could be used to help clinicians respond more directly and effectively to acute issues. It could also help clinicians provide a higher intensity of care in anticipation of acute issues. Evidence suggests that closer attention from clinicians during hemodialysis may be beneficial following hospital discharge and may help expedite placement of arteriovenous access in patients new to dialysis.24,25 Altogether, telemedicine could improve health outcomes by facilitating clinician visits during these important care transitions.
Negative experiences with telemedicine suggest how its future use should be limited. Participants reported a perceived loss of personalized medical care. This was a fundamental limitation when telemedicine was used to care for patients with advanced chronic kidney disease.10 A care model that only includes telemedicine risks missing personalized care. Instead, a hybrid model, where telemedicine complements in-person care, may be optimal. A hybrid model that required an in-person visits every 3 months was legislatively mandated for patients receiving home dialysis telemedicine and has been effective at improving health outcomes and lowering costs in other chronic diseases.26, 27, 28, 29
Participants also discussed limitations with the physical examination performed during telemedicine visits. In some instances, devices such as the electronic stethoscope and wearables could help fill gaps in the physical examination.30 Participants reported concerns that telemedicine visits did not offer them the valued opportunity to call their physician back to ask follow-up questions. Thus, it would be important for future telemedicine programs to include an opportunity for participants to ask follow-up questions before clinicians finish their telemedicine rounds. Moreover, participants expressed concerns over loss of privacy because they had to speak loudly to be heard on the telemedicine device, which thwarts patient discussion. The use of headphones or microphones could help to address this issue.
In other clinical settings, technical challenges are common and can limit patients’ access to telemedicine.31, 32, 33 Older patients or those living in remote areas where internet connectivity is limited may be disproportionately affected. Yet, a small study of telemedicine in hemodialysis indicated that technical issues were relatively uncommon.9 Our findings are consistent. Specifically, although some participants reported an adjustment period, technical issues were rare. Assistance from dialysis staff and wireless internet infrastructure in dialysis facilities may help address common challenges to the use of telemedicine.
Our study has limitations. Having only recruited participants in a single metropolitan area, our findings may not be applicable to other locations, especially those in rural areas. Because we included participants who spoke either English or Spanish, our results may not apply to persons who speak other languages, including those who may have recently immigrated from Asian countries. Many of the interviews were conducted later in the pandemic when physicians used telemedicine less frequently. In instances where physicians had stopped using telemedicine, participants relied on memory. Experiences of telemedicine during the pandemic may differ from experiences in a setting where there is no pandemic.
In summary, in our study of primarily Black and Hispanic participants receiving in-center hemodialysis in a major metropolitan area, many participants adapted to telemedicine visits by their nephrologists in the context of the COVID-19 pandemic and observed its benefits. However, further considerations regarding communication, privacy, and physical assessments are necessary. Integrating telemedicine into future in-center hemodialysis care using a hybrid approach could potentially build trust, optimize communication, and augment care.
Article Information
Authors’ Full Names and Academic Degrees
Trenton M. Haltom, PhD, Susie Q. Lew, MD, Wolfgang C. Winkelmayer, MD, ScD, Glenn M. Chertow, MD, MPH, Allison Jaure, PhD, and Kevin F. Erickson, MD, MS
Authors’ Contributions
Research idea and study design: TMH, SQL, WCW, GMC, AJ, KFE; data acquisition: TMH, KFE; data analysis/interpretation: TMH, AJ, KFE; thematic development: TMH, SQL, WCW, GMC, AJ, KFE; supervision or mentorship: WCW, GMC, AJ, KFE. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved.
Support
This work was funded by a grant from the National Institute of Diabetes and Digestive and Kidney Diseases (R01DK128209).
Financial Disclosure
Dr Erickson reports receiving personal fees from Acumen LLC., Outset Medical, Fresenius Medical, and Boehringer Ingelheim and honoraria from Dialysis Clinics, Inc. Dr Lew reports consulting for Novo Nordisk. Dr Winkelmayer reports having received honoraria from Akebia, Anthos, Ardelyx, AstraZeneca, Bayer, Boehringer Ingelheim, Cadrenal, GlaxoSmithKline, Merck, Novartis, Natera, Pharmacosmos, Unicycive, Vera, and Zydus. The other authors have no relevant financial interests.
Acknowledgements
Special thanks to Lourdes Pelaez, and Siloe Alvarado, MD, for their help recruiting and interviewing Spanish-speaking participants; Ariel Harrison for her help recruiting and coding; and Merin Thomas for her administrative work.
Peer Review
Received February 22, 2024, as a submission to the expedited consideration track. Evaluated by 2 external peer reviewers, with direct editorial input from the Editor-in-Chief. Accepted in revised form May 3, 2024.
Footnotes
Complete author and article information provided before references.
Item S1: Interview guide for patients.
Table S2: Extended Table of Themes and Exemplar Quotes.
Supplementary Materials
Item S1; Table S2.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Item S1; Table S2.