Abstract
Background:
Telemedicine has become essential for maintaining post-transplant care while reducing exposure risks during the SARS-CoV-2 pandemic. Lung transplant recipients require frequent monitoring due to chronic immunosuppression and comorbidities. This study evaluates patient satisfaction and the feasibility of a lung transplant telemedicine program using a multidimensional, patient-centered survey.
Methods:
We conducted an observational study at the University of Maryland Lung Transplant Center between March and November 2020. A customized telemedicine satisfaction survey, developed with expert and patient input, was distributed via e-mail to lung transplant recipients, with a follow-up 6 months later. Key domains included quality of care, technology usability, cost burden, and overall experience.
Results:
Of 148 patients surveyed, 106 responded, with 53 completing the follow-up survey. In the initial and follow-up surveys, 94% and 89% rated telemedicine care as “very good” or “excellent.” Technology usability was high, with 96% and 94% reporting good understanding. Most patients (90% initially, 84% at follow-up) noted decreased travel costs. However, while patients appreciated these benefits, preference for in-person visits increased from 45% initially to 65% at follow-up.
Conclusion:
Lung transplant patients reported high satisfaction with telemedicine, benefiting from reduced costs and COVID-19 exposure risk. The survey captured the complexities of post-transplant care while addressing technological barriers. Future research should validate telemedicine satisfaction tools across multiple centers and assess its impact on clinical outcomes in transplant populations.
Introduction
Lung transplantation is the only lifesaving intervention for selected patients with severe end-stage lung disease. Post-transplant care, however, is extremely complex and requires lifelong follow-up by highly trained transplant specialists. Therefore, transplant care is limited to tertiary lung transplant centers, which makes access to health care particularly challenging for many patients. 1 In addition to travel distance, lung transplant can present a significant burden to patients in terms of appointment availability, travel-related cost, or time off from work (either for patient or their caregiver). 2
Telemedicine has emerged as a potential option to provide long‐distance clinical care. It has revolutionized our concept of patient care for multiple chronic diseases. 3 –11 In addition to improving compliance, patients are empowered to participate in their own care at home without the additional social and financial burdens of long distance travel. 12 In the context of the SARS-CoV-2 pandemic, coronavirus infection poses a great risk to transplant recipients due to chronic immunosuppression, polypharmacy, and coexisting comorbidities. 13 In addition, transplant recipients may have more intense and prolonged shedding of the virus, thus potentially increasing the risk of transmission to other contacts including members of their health care teams. 13 Telemedicine has increased dramatically in an effort to maintain patient care and reduce the risk of SARS-CoV-2 exposure to patients and health care workers.
Therefore, telemedicine has developed as a necessary strategy to reduce the risk to this vulnerable population and their health care providers while providing post-transplant care. Transplant care is complex, involving challenges in post-transplant care, diagnostics, and caregiver support. A patient satisfaction survey should comprehensively assess quality of life, psychological well-being, and telemedicine-specific concerns while remaining clear, relevant, and easy to complete. The University of Maryland Medical Center (UMMC) launched its Lung Transplant Telemedicine Program in May 2019 to provide a practical alternative to in-person follow-ups, aiming to improve patient satisfaction by reducing travel time and costs. This focus on patient satisfaction reflects a broader shift in health care over the past decade, where enhancing quality of life and meeting patient-centered goals have become essential benchmarks of care. 14 The Centers for Medicare and Medicaid Services has further reinforced this trend by prioritizing patient satisfaction as a critical measure of health care quality.
While telemedicine has been widely adopted in various medical fields, its effectiveness and patient satisfaction in lung transplant follow-up care remain underexplored. Moreover, standardized and validated survey tools for assessing telemedicine satisfaction in transplant populations are scarce, despite their importance for designing patient-centered care models. Our study addresses this gap by developing and piloting a novel satisfaction survey tailored to lung transplant recipients.
Methods
STUDY SETTING AND PATIENT POPULATION
All lung transplant patients in our program were considered eligible for the study. The study population included lung transplant patients, older than 18-year-old receiving post-transplant care at UMMC who agreed to participate in the study. Of note, the UMMC Lung Transplant Program performs between 25 and 45 lung transplants a year. The majority of our recipients live in a 40-mile radius from our transplant center in Maryland. However, in the last 5 years, there has been a steady increase in the number of patients living more than 60 miles away from transplant center, including patients from other states.
PROCEDURES
Telemedicine appointment
A lung transplant coordinator scheduled virtual clinic visits and provided patients with e-mail instructions, including a Zoom link, a Health Insurance Portability and Accountability Act-compliant telemedicine platform. Patients were expected to have access to a computer or smart device with internet, a camera, microphone, and speakers. Zoom could be accessed through a browser or the installed application; patients were not required to install the software. To ensure accessibility and troubleshoot potential technical issues, the transplant team contacted each patient by phone 1 day prior to the visit to confirm connectivity and offer assistance as needed. Minor technical difficulties, such as audio/video lags, were occasionally reported but did not interfere significantly with the conduct of visits. No patients were excluded due to lack of access or inability to use the platform.
Patients routinely used pulse oximeters and blood pressure monitors to track vitals, including heart rate, weight, and temperature. During the SARS-CoV-2 pandemic, they were also advised to obtain home spirometers to measure forced expiratory volume and peak expiratory flow.
Before each visit, patients were reminded of privacy measures and contacted by phone a day prior. At the virtual clinic, the post-transplant coordinator reconciled medications and reviewed vitals. The provider then conducted a standard clinical assessment, including interval history, symptom review, spirometry analysis, and treatment planning. Patients were informed that physical exams would not be performed.
In addition, patients received guidance on SARS-CoV-2 precautions and social distancing. Following the visit, providers documented findings in the electronic medical record (Epic).
QUESTIONNAIRE DEVELOPMENT TO EVALUATE TELEMEDICINE SATISFACTION
To assess satisfaction with telemedicine visits, we developed a Telemedicine Satisfaction Questionnaire. Two study team members (J.K. and I.T.) designed the questionnaire based on literature on telemedicine satisfaction, health-related quality of life, emotional health in transplant patients, lung transplant costs, and health care utilization.
To ensure content validity, an expert panel (N = 5) reviewed item selection, provided feedback, and identified any missing relevant items. After consensus, an online focus group (N = 9) of lung transplant patients participated in cognitive debriefing. Sociodemographic data were collected, and participants rephrased items to assess clarity, identified difficult concepts, and evaluated content relevance, item order, questionnaire length, and response options. 15 In addition, researchers evaluated if meaningful topics for lung transplant patients during the telework experience were lacking and if there was a need to add more items to cover those topics. After the focus groups, the items were reviewed based on participant responses. The expert panel evaluated the results of the cognitive debriefings and made the appropriate changes after in-depth discussion of the results to ensure context validity and create the final version of the questionnaire.
ETHICAL APPROVAL AND CONSENT
This study was approved by the institutional review board (IRB) of the UMMC (IRB #HP-00089360). The research was conducted in accordance with the ethical standards of the Declaration of Helsinki and its subsequent amendments.
DATA COLLECTION
The patients received an initial questionnaire in March 2020 (at the beginning of the SARS-CoV-2 pandemic) followed by the same survey in September (at 6-month follow-up) in order to capture the majority of patients who were seen in the telemedicine clinic. The study questionnaire was sent through e-mail. All patients were asked generic questions regarding general health and mental health. The telemedicine-specific questions (questions 4–13) were answered only by the patients who already had a telemedicine visit. At the time of the first survey, about 61% of patients had a telemedicine visit and were able to finalize the telemedicine survey. At the second survey, about 85% of the patients had telemedicine experience. Data were collected using the web-based Research Electronic Data Capture (REDcap) platform of UMMC.
STATISTICAL ANALYSIS
We used percentages (n) to report the descriptive statistics for the survey questions. The effect of demographics and other factors was evaluated using the Chi-square test and analysis of variance. All the patients that completed both surveys were included in the analysis. As an exploratory analysis, we calculated the number of patients who had a positive change defined as increasing 1 point in the follow-up scale.
Results
In March 2020, 148 lung transplant patients received the survey via e-mail. A total of 106 patients answered the questionnaire (Table 1). A total of 53 completed the survey on 6-month follow-up. The mean age was 65.8 ± 8.8 years. Fifty percent were females. Approximately 73% had double lung transplantation, and 27% had undergone single lung transplantation. By June, 61% of the patients had telemedicine visits compared with 85% by December. The self-reported overall health of the patients rated as “very good/excellent” declined during this period from 60.4% to 41.5% (Table 2). Their emotional and mental health also declined from 67.9% to 58.5% on follow-up. The majority of the patients believed that the care they received was “very good/excellent” in the two surveys (93.5% and 88.9%, respectively). About 70% of the patients rated they would prefer telemedicine to coming to clinic in person. Telemedicine helped most of the patients (96.8% and 93.3% in the first and follow-up survey, respectively) understand what they needed to do to care for themselves after transplant.
Sociodemographic Characteristics of the Focus Group
AA, African American; F, Female; M, Male; W, White.
Telemedicine Survey Results
For questions 1–3 total N = 53, and for questions 4–13 total N = 31.
For questions 1–3 total N = 53, and for questions 4–13 total N = 45.
Of note, telemedicine was rated to be cost-saving for most patients (90.3% and 84.4%). Seventy percent would recommend such program to other patients. Almost all patients (96.8% and 93.3%) were able to understand how to use their electronic devices for telemedicine. About 71% of the patients thought that telemedicine improves their access to health care services. The proportion of patients who thought that telemedicine is the same as in-person visits decreased from 64.5% to 44.4% on follow-up, but most of the patients (84%) felt very comfortable communicating with the clinician using the telemedicine program. The overall experience of the program for most patients (93%) was rated as “very good/excellent.”
The exploratory analysis of the changes between the first and the second survey is presented in Table 3. About 57% of the patients had more favorable opinions about the care they received and their preference for telemedicine. The cost-saving feature of telemedicine improved for 90% of the patients, and 70% improved their understanding on how to care for themselves after transplant. Over the two periods, 60% of patients demonstrated improved proficiency in using electronic devices for telemedicine. Approximately 40% reported a more favorable perception of telemedicine’s role in enhancing access to health care services and its comparability with in-person visits. In addition, 67% of patients showed improved communication skills with clinicians through telemedicine, while 73% reported a higher overall satisfaction with their telemedicine experience.
Positive Change a in the Answers from First to the Follow-Up Survey
Positive change is defined as improved score by 1 point in the follow-up score (e.g., from 1 to 2 or from 4 to 5).
For questions 1–3 total N = 53, and for questions 4–13 total N = 30.
We examined the potential impact of demographic factors on survey responses, including gender, age at survey completion, age at transplantation, time elapsed since transplantation, and type of transplantation (single or double lung) (Table 1). Overall, the effects on survey responses were limited. Patients who were older at the time of transplantation rated their mental and emotional health more positively compared with younger patients (Spearman ρ = 0.29, p = 0.041). However, these older patients faced greater challenges using telemedicine to understand self-care after transplantation (Spearman ρ = −0.25, p = 0.09). They also reported more difficulty in understanding how to use electronic devices for telemedicine (Spearman ρ = −0.37, p = 0.014) and felt less comfortable communicating with clinicians (Spearman ρ = −0.27, p = 0.069).
Conversely, patients with a longer duration since transplantation expressed greater comfort in communicating with clinicians via telemedicine (Spearman ρ = 0.32, p = 0.033). No significant associations were observed for gender or the type of lung transplantation (single vs. double).
Discussion
Lung transplant recipients require specialized, frequent care due to their high risk of infection and rejection. The SARS-CoV-2 pandemic complicated in-person visits, necessitating alternative care strategies.
Our retrospective study suggests telemedicine as a viable alternative for post-transplant care. Telemedicine was not incidental but served as the primary care modality during the study period, making it a central component of this investigation into patient satisfaction and care delivery outcomes in the lung transplant population. To our knowledge, this is among the first U.S. studies assessing patient satisfaction with telemedicine in lung transplant recipients. Results showed high overall satisfaction with telemedicine services.
Telemedicine can be defined as the use of electronic information and communications technologies to provide and support health care when distance separates the participants. 16 Several articles highlight the impact of telemedicine in post-transplant care. A prior retrospective analysis presented the results of telemedicine consultations in comparison with in-person visits in a lung transplant center in Germany over a 6-week study period. 17 Despite some technical difficulties encountered by a few patients and providers, the authors reported that overall satisfaction with telemedicine was high. 17 In another study, Lee et al. report the results of a prospective randomized clinical trial in liver transplant patients. The telemedicine patients described a high level of satisfaction with the telemedicine clinics comparable with in-person visit. Similar to our patients, the liver transplant patients expressed a high level of satisfaction related to significantly less commute and waiting time. 18 Telemedicine also increased access to care for kidney transplant recipients during the pandemic as it offers a prompt, safe, and convenient platform in the delivery of care for these patients while avoiding a visit to an emergency department and health care provider exposure. 19 This study parallels our observations regarding use of telemedicine as a potential option for management of post-transplant patients during SARS-CoV-2 pandemic. The authors describe in detail how telemedicine helped assess, diagnose, triage, and treat kidney transplant recipients with SARS-CoV-2 while avoiding an emergency department or outpatient clinic visit.
Furthermore, Wolf et al. looked at the acceptance of telemedicine by kidney transplant recipients during the COVID-19 pandemic using a 16-question survey. 20 The response rate was 51.7%, similar to our study, and it showed overall satisfaction with telemedicine as an acceptable alternative to in-person visits. They reported care provided with telemedicine was adequate, simple to use, and convenient, and they had enough time to address all concerns and questions with their providers. 20 In another study published by Huuskes et al., kidney transplant recipients’ perspective on telehealth during the COVID-10 pandemic was evaluated. Participants felt that telehealth significantly minimized the burden of treatments and enhanced their sense of empowerment for self-management. However, technical challenges and missed in-person interaction with their clinicians as well as other transplant recipients and multidisciplinary team were among the barriers. 21
Our findings align with prior studies showing high patient satisfaction with telemedicine in transplant care. 17,22 Notably, satisfaction was largely driven by cost savings, reduced travel burdens, and increased convenience, factors that are particularly impactful for lung transplant recipients, who often require frequent follow-ups at specialized centers. In addition, technological proficiency was high among respondents, with over 90% reporting ease of use, which likely contributed to positive perceptions. Similar findings were observed in a qualitative study from Turkey, where patients valued telemedicine for minimizing COVID-19 exposure risk, saving time and money, and being accessible even to first-time users. 23 In contrast to other studies, our patients reported a perceived decline in general and mental health during 6-month follow-up, likely related to the detrimental impact of the SARS-CoV-2 pandemic on mental health in general.
While patients appreciated decreased cost and the opportunity to avoid COVID exposure, 45% during first and 65% of patients during 6-month follow-up survey preferred in-person follow-up versus telemedicine. Findings from the systematic review by Pogorzelska and Chlabicz suggest several reasons for this preference. 24 A major factor is the absence of physical examinations, which many patients consider essential for detecting complications and ensuring comprehensive post-transplant monitoring. In addition, technological barriers, including difficulties using telehealth platforms and concerns about technical reliability, can make virtual visits frustrating, particularly for older adults or those with limited digital literacy. The emotional and psychological aspects of in-person visits also play a role, as patients often value direct interactions with their providers, which foster trust and reassurance. Furthermore, newly transplanted patients or those experiencing complications may feel in-person care is more effective for addressing complex medical needs and adjusting treatment plans in real time. 24
INNOVATION IN SURVEY DEVELOPMENT FOR LUNG TRANSPLANT PATIENTS
Developing a patient satisfaction survey for lung transplant recipients requires a structured and patient-centered approach to ensure its validity and relevance. Surveys should be designed based on established frameworks, such as the Consumer Assessment of Healthcare Providers and Systems, which emphasize key domains such as communication, access, and overall experience. 25 Involving multidisciplinary experts—including transplant physicians, nurses, and patient advocates—is essential to capturing both clinical and logistical aspects of care. In addition, cognitive debriefing interviews with lung transplant patients can refine survey items by ensuring clarity and comprehensibility. 26 Previous studies have emphasized the importance of incorporating validated tools, such as the Telehealth Usability Questionnaire, to assess technological barriers and usability. 27 Moreover, given the evolving nature of telemedicine, longitudinal assessments tracking patient preferences over time are crucial for identifying trends and areas for improvement. Our survey was developed using these best practices, including expert panel input and patient focus groups, ensuring it meets high standards for content validity and reliability. By integrating these principles, future surveys can generate reliable data to optimize telemedicine and in-person care for lung transplant recipients.
LIMITATIONS
Our study has several limitations. First, it is a single-center study, which limits generalizability. Factors such as institutional telemedicine infrastructure and patient demographics may impact satisfaction rates. Second, the survey used was not previously validated due to the need to expedite the process during the pandemic, though we employed expert review and cognitive debriefing to strengthen its content validity. In addition, while we observed high satisfaction, patient-reported metrics do not necessarily correlate with clinical outcomes. Future research should investigate whether telemedicine satisfaction translates into improved medication adherence, fewer hospitalizations, and better long-term transplant outcomes. Finally, response bias may have influenced results, as patients who struggled with telemedicine or had negative experiences may have been less likely to complete the survey.
STRENGTHS
The study has several strengths. First, it addresses a clinically relevant question, as transition to telemedicine was essential to maintain follow-up care of our lung transplant patients and limit the risk of SARS-CoV-2 exposure to patients and providers. Second, the study assesses a relatively large number of lung transplant patients. Third, our structured development of a telemedicine satisfaction survey tailored to lung transplant recipients. We incorporated expert panel reviews and patient focus groups, ensuring that the survey captured meaningful and context-specific aspects of telemedicine satisfaction. This approach provides a replicable framework for developing similar tools in other high-risk or transplant populations. Finally, the follow-up period is longer (6 months), enabling better estimates of the long-term effects of telemedicine.
Our findings suggest that telemedicine is a viable alternative to in-person visits for lung transplant recipients requiring continuous medical surveillance and immunosuppressant management. However, certain patients with more complex clinical conditions may still require in-person visits.
Future studies should focus on refining telemedicine models to optimize both patient convenience and clinical effectiveness. Specifically, research should explore (1) the impact of telemedicine on transplant rejection rates and hospitalizations, (2) patient preferences for hybrid models with varying degrees of virtual and in-person care, and (3) cost-effectiveness analyses to evaluate long-term financial benefits for both health care systems and patients. A prospective, multicenter trial comparing telemedicine-based follow-up with traditional in-person visits would provide critical data to guide future telehealth policy in transplant care.
Conclusions
This study is among the first to investigate the integration of telemedicine into post-transplant care, particularly for the follow-up and management of complex patient populations. Our findings demonstrate that telemedicine was not merely a temporary solution during the pandemic but also an essential care delivery modality that helped reduce health care costs, enhance patient satisfaction, and support continuity of care. These results underscore its potential as a critical and sustainable element of modern transplant follow-up strategies.
Footnotes
Authors’ Contributions
J.K., E.V.-O., and I.T.: Conceptualization. J.A.H., A.V., V.P., and A.T.I.: Data acquisition. J.A.H., H.M.N.A., V.P., A.T.I., B.P.G., and M.L.T.: Methodology/Investigation. R.M.V.: Formal data analysis. I.T.: Funding acquisition. J.K., E.V.-O., and I.T.: Writing—original draft. J.A.H., H.M.N.A., V.P., A.T.I., B.P.G., M.L.T., and G.D.: Writing—review and editing.
Disclosure Statement
The authors declare no conflicts of interests.
Funding Information
This work was supported by the Living Legacy Foundation.
