Understanding Preferences Toward Virtual Care: A Pre-COVID Mixed Methods Study Exploring the Perspectives of Patients with Chronic Liver Disease
Background
Chronic liver disease (CLD) refers to a number of diseases characterized by liver inflammation and/or fibrosis. Globally, the impact of CLD is immense, with over 2 million deaths attributed to liver diseases, including viral hepatitis, nonalcoholic fatty liver disease, and alcohol-related liver disease.1 CLD can progress to cirrhosis, which in its advanced stage, is characterized by complications such as ascites, variceal hemorrhage, infections, and hepatic encephalopathy,2,3 and frequent hospitalizations and readmissions are also common.4 Routine outpatient visits with liver specialists are necessary across the spectrum of CLD to provide therapeutic strategies to reduce disease progression, mitigate frequent admissions, and improve patient quality of life.5–7
Traditionally, outpatient visits with specialty care have been delivered in person with the patient traveling to a centralized location to see the health care provider. However, with recent technological advances, there has been a movement toward offering this care virtually via video or teleconferences. The World Health Organization defines telemedicine as the delivery of health care services at a distance by health care providers for the purposes of diagnosis, treatment, and prevention of disease.8 More recently, the Canadian Medical Association (CMA) has adopted the term virtual care to describe these remote visits with patients or their caregivers that aim to “facilitate or maximize the quality or effectiveness of patient care.”9,10
Awareness and use of virtual care approaches has been increasing among patients and health care providers. Success with virtual care has been achieved in other patient populations with chronic health conditions such as congestive heart failure, stroke, diabetes, and chronic obstructive pulmonary disorder.11–14 Virtual care has been associated with a notable improvement in rates of 30-day readmissions as well as increased satisfaction with virtual care in comparison with usual care in the areas of convenience, costs, and communication.15–17 The positive effects of virtual care have also been noted on patient’s self-management and awareness of their health condition, with improvements in self-efficacy, awareness, and empowerment.16,18 Moreover, health care providers have identified benefits of virtual care including improved access and timeliness of care as well as increased clinical efficiency.9,16,19
Since the COVID-19 pandemic began in the Spring 2020, virtual care has become particularly topical. Health care delivery has been forced to evolve with the new challenges of this unprecedented crisis. With stay-at home and physical distancing recommendations in place, virtual care may offer an opportunity for high-quality ongoing health care delivery, without the risks to patient and clinician safety.
While there is considerable empirical literature about patient preferences in other chronic disease populations, there has been relatively little studied about virtual visits for patients with CLD outside Hepatitis C management.17 To the best of our knowledge, there has been no mixed methods evaluation. This mix of quantitative and qualitative inquiry is beneficial as it enables a more in-depth exploration of the patient experience and allows insights not available from quantitative study alone.20 Performed in the pre-COVID-19 era, before the bias that the condition has brought to the choice of virtual care delivery, the aim of the present study was to explore the perspectives of patients with CLD toward the use of virtual care with their liver specialists. Specifically, we wanted to understand: (1) patients’ past experiences in attending in-person appointments, (2) patients’ openness and preferences for receiving virtual care, and (3) the relationship between the severity of CLD, health-related quality of life, and other demographic characteristics and preference for receiving virtual care.
Methods
Design
This was a hospital-based, cross-sectional, mixed methods study, in which both quantitative data and qualitative data were collected to facilitate a comprehensive understanding of patient perspectives on receiving virtual care from their liver specialists.
The study was approved by the institutional review board at the University of Alberta (Pro00089501).
Participants
The study used a convenience sampling approach from patients with CLD who were attending an outpatient visit with their liver specialist at a large academic hospital between July and September 2019. The inclusion criteria were: adult patients (aged 18 years or older), with a confirmed clinical diagnosis of CLD, and able to provide informed consent in English.
Quantitative Methods
Data collection
Data were collected via survey questionnaires administered on an iPad by a research assistant, taking ∼10–15 min to complete. The questionnaires collected data on participant demographic data (age, sex, postal code, relationship status, and income level) and patient-reported outcome measures using a standardized instrument, the EQ-5D.21 The EQ-5D is used to measure quality of life across five dimensions, including mobility, self-care, usual activities, pain/discomfort, and anxiety/depression on a 5-point Likert scale. The EQ-5D also includes a Visual Analog Scale, which asks participants to report their perceived health status from 0 (worst possible) to 100 (the best possible health status). Participants were also asked to complete nine items on the following topics: number of hospitalizations within the last year, number of visits with a liver specialist within the last year, number of past experiences with virtual visits, confidence in attending virtual visits, importance of having the first visit with a specialist in person, and openness to receiving a virtual visit in the future were each rated on a 10-point Likert scale.
Patients’ clinical charts were reviewed to collect data on Child–Pugh scores. The Child–Pugh score is a system for evaluating the severity of CLD, primarily cirrhosis. The system scores five clinical measures of liver disease on a 3-point severity scale ranging from 1 to 3. The five clinical measures are total bilirubin, serum albumin, prothrombin time, ascites, and hepatic encephalopathy. Patients are categorized into three classes based on points. Class A patients have mild cirrhosis (5 to 6 points), Class B patients have moderate cirrhosis (7 to 9 points), and Class C patients have severe liver disease (10–15 points).
Analysis
Quantitative data were analyzed using SPSS (version 26) and R (version 3.5.0) using the rms package.22 Specifically, data cleaning, coding, and descriptive analysis were performed with SPSS, with regression analysis conducted with R. Descriptive statistics were computed on frequency tables for both sociodemographic and clinical data, whereas the outcome variable was analyzed using box plots. Ordinal regression analysis was performed to identify factors explaining patients’ acceptance of telemedicine. The explanatory variables included sociodemographic variables and clinical variables (cirrhosis status using Child–Pugh categories and the EQ-5D). Wald’s chi-square test was conducted to determine the contribution of the explanatory variables to the regression model. Results are presented in a table and partial effect plots. Partial effect plots show the relationship between an outcome and an explanatory variable while adjusting for interference from other explanatory variables.23
Qualitative Methods
Data collection
Qualitative data were collected via free-text boxes presented alongside quantitative questionnaires. Examples of topics explored with participants were “what has been your experience in coming to see your liver specialist in-person,” “what are concerns you have with virtual visits,” and “tell me about your preferences for receiving serious news from your liver specialist.” The decision to have participants provide written content over conducting semi-structured interviews was made in recognition of the costs and time associated with transcription as well as the large sample size of the study.
Analysis
Written data were analyzed using a qualitative content analysis approach whereby codes, categories, and themes emerged inductively from the data. The qualitative analysis was facilitated using Quirkos (version 2) and was primarily completed by one of the authors (A.M.H.), supplemented with discussions with the remaining authors, particularly when discussing the qualitative findings in the context of quantitative results.
Results
Participants
A total of 101 patients with CLD participated in both the quantitative and qualitative components of this study. Participants had a mean age of 54.5 years (range 19–87 years), with 58% of the sample being male. The majority of participants (70.3%) were in a married/common law relationship and did not have cirrhosis (57%) at the time of data collection. The most common causes of participant’s CLD included nonalcoholic fatty liver disease (31.5%), hepatitis B (21.8%), and alcohol use (20%). The mean distance participants traveled to attend their in-person appointment was 78 km (range 5.2–800 km). Further demographic details are provided in Table 1.
VARIABLE | N (TOTAL = 101) | % |
---|---|---|
Sex | ||
Male | 58 | 57.4 |
Female | 43 | 42.6 |
Relationship status | ||
Single/widowed | 20 | 19.8 |
Married/common law | 71 | 70.3 |
Divorced/separated | 7 | 6.9 |
Prefer not to answer | 3 | 3.0 |
Income level | ||
<15,000 | 7 | 6.9 |
15,000–29,999 | 9 | 8.9 |
30,000–49,999 | 11 | 10.9 |
50,000–79,999 | 19 | 18.8 |
>80,000 | 29 | 28.7 |
Cirrhosis status | ||
Noncirrhotic | 57 | 57.0 |
Child–Pugh A | 26 | 26.0 |
Child–Pugh B | 14 | 14.0 |
Child–Pugh C | 3 | 3.0 |
Visits with liver specialist in previous year | ||
0 | 3 | 2.9 |
1–2 | 84 | 83.1 |
3–4 | 10 | 9.9 |
>5 | 4 | 3.9 |
Hospitalizations related to CLD in previous year | ||
0 | 82 | 81.1 |
1–5 | 14 | 13.8 |
>5 | 5 | 4.9 |
EQ-5D | ||
Problems with performing usual physical activities | ||
None | 75 | 74.3 |
Slight | 13 | 12.9 |
Moderate | 8 | 7.9 |
Severe | 3 | 3.0 |
Extreme | 2 | 2.0 |
Problems with mobility | ||
None | 82 | 81.2 |
Slight | 5 | 5.0 |
Moderate | 8 | 7.9 |
Severe | 6 | 5.9 |
Problems with pain/discomfort | ||
None | 75 | 74.3 |
Slight | 11 | 10.9 |
Moderate | 9 | 8.9 |
Severe | 5 | 5.0 |
Extreme | 1 | 1.0 |
Problems with self-care | ||
None | 97 | 96.0 |
Slight | 3 | 3.0 |
Moderate | 1 | 1.0 |
Anxiety/depression | ||
None | 78 | 77.2 |
Slight | 11 | 10.9 |
Moderate | 10 | 9.9 |
Severe | 2 | 2.0 |
Quantitative Results
Participant preferences toward virtual care were measured via a series of 10-point Likert scales. The mean score for confidence in attending a virtual visit from home was 8.5, with 78.2% of participants indicating that they had high confidence in their ability to attend this type of visit from home. Participants felt less strongly about the need to attend a virtual visit from home, with the mean score of 7.4 indicating only moderate preference. Attending their initial visit in-person with their liver specialist was of importance to the majority of participants with 74.3% and 9.9% expressing high and moderate importance, respectively. The vast majority of participants (n = 87, 86%) expressed a willingness [moderate (26.7%), high (59.4%)] to receive a virtual visit with their liver specialist in the future (Table 2).
ITEM | LOW | MODERATE | HIGH | MEAN |
---|---|---|---|---|
How confident do you feel attending a virtual visit from home? | 7 (6.9%) | 15 (14.9%) | 79 (78.2%) | 8.5 |
How important is it to attend a virtual visit from home? | 14 (13.9%) | 28 (27.7%) | 59 (58.4%) | 7.4 |
How important is it to receive your first visit with your liver specialist in-person? | 16 (15.9%) | 10 (9.9%) | 75 (74.3%) | 8.1 |
How willing are you to receive a virtual visit with your liver specialist in the future? | 14 (13.9%) | 27 (26.7%) | 60 (59.4%) | 7.4 |
Results from the quantitative analysis of the multivariate model found the following significant relationships with acceptance of virtual care (Table 3 and Fig. 1):
FACTOR | WALD’S CHI-SQUARE | DF | P-VALUE |
---|---|---|---|
Age (total) | 10.22 | 2 | 0.0060 |
Nonlinear | 1.28 | 1 | 0.2577 |
Income level | 12.16 | 5 | 0.0326 |
Relationship status | 2.41 | 3 | 0.4912 |
Cirrhosis status (Child–Pugh) | 7.09 | 3 | 0.0689 |
Distance (total) | 5.87 | 2 | 0.0532 |
Nonlinear | 2.38 | 1 | 0.1230 |
Mobility | 2.88 | 3 | 0.4102 |
Self-care | 0.60 | 2 | 0.7394 |
Activities | 3.81 | 4 | 0.4320 |
Pain/discomfort | 8.20 | 4 | 0.0846 |
Anxiety | 0.90 | 3 | 0.8242 |
1. |
Age: Younger patients were more accepting of virtual care, with a steeper decline in acceptance seen after the age of 55 years (p < 0.05). |
||||
2. |
Income level: Acceptance of virtual care significantly increased with increasing income levels. Patients earning <$15,000 annually were less likely to accept virtual care (p < 0.05). |
Although not significant, trends emerged that showed that those individuals who did not have cirrhosis or had compensated cirrhosis (Child–Pugh A) had a higher acceptance of virtual care compared with those with more advanced cirrhosis. Analysis also trended toward demonstrating a relationship, between distance from the hospital and acceptance of virtual care, in that patients who live further away from the hospital had greater acceptance of virtual care.
No relationship was found between acceptance of virtual care and relationship status, or any of the EQ-5D-5L domains.
Qualitative Results
The themes emerging from the qualitative analysis included: (1) past experiences attending in-person visits, (2) perspectives on the use of virtual visits, and (3) perceived challenges of virtual visits.
Theme 1: Past experiences with receiving in-person care
Participants spoke about experiencing challenges traveling to attend appointments, particularly in winter when road conditions were poor. They also described the difficulties they encountered with traffic and finding parking at the clinic where they saw their liver specialist. Several participants spoke of the financial burden of attending in-person appointments. One participant who traveled ∼450 km to attend her appointment recalled, “Driving [to the appointment] is five hours. We have to get up early, and my husband also has liver disease and so it’s a lot of trips. When we have to pay for a hotel, it gets expensive.” Similarly, another participant who lived within 50 km of the clinic described how his liver condition made traveling to the clinic for in-person visits difficult “I worry about the drugs I’m taking because the side effects include frequently needing to use the washroom. It’s a problem when I have to drive long distances.”
Even those who lived in the same city as the clinic described the challenges they faced in attending in-person appointments. One participant stated, “There is really bad traffic [near the clinic] and parking is a headache.” Others spoke about missing time from paid employment. They recognized that an in-person appointment required “time out of the day to come in” and that it would be “nice to avoid missing work” where their “doctor felt it was appropriate.”
Participants also spoke about the enjoyment they experienced in attending in-person appointments with their liver specialists. One participant said, “I’m very happy to come in [to the clinic] because my doctor is so great. I’m happy to accommodate his schedule.” Others spoke about their in-person appointments as an opportunity to “meet new people” and “have personal interaction.”
Theme 2: Perspectives on the use of virtual care
Many participants identified the potential conveniences of virtual care. Some tied this convenience to the financial burdens associated with attending in-person appointments, such as parking, gas, hotel rooms, and missed employment income. Others spoke about the stress associated with attending an in-person appointment, with one participant stating, “Hospitals make me anxious.” Another participant echoed this “There is stress with traffic, parking, finding the clinic the first time. Stress is the underlying cause of many diseases; I don’t need more stress.”
A number of participants identified the difficulties associated with attending in-person appointments in the winter, when travel was made challenging by poor road conditions. They saw a virtual care option as a means of avoiding extreme cold and precarious traveling conditions. For instance, one participant said, “I am open to using virtual [visits]. Mainly because we have horrendous winters and there are some days that you just can’t make it in. I don’t want to miss an appointment because of weather … And sometimes life just gets in the way, people may have multiple specialists and it can be hard to fit everyone in, so virtual visits would maybe help to not miss appointments.”
Others believed that virtual care represents potential cost savings to the health care system. They believed that this type of visit could mean increased efficiency, with their liver specialist potentially able to see more patients in a day through this medium. Specifically, several participants acknowledged that “we need to use healthcare resources more wisely” and that the “healthcare system should be as cost-effective as possible.” Others thought that virtual care might eliminate “the backlog” of patients and reduce the wait times for individuals needing to see a liver specialist.
Conversely, a number of participants spoke about their preferences for continuing with in-person appointments with their liver specialists. Several discussed liking the “human aspect” of an in-person visit and expressed concern that interactions between patients and providers would be markedly different if visits were done virtually. A few participants were concerned about their ability to understand medical issues via a virtual medium. One participant stated, “In person is best for me because it helps me understand better. I would be nervous with an online visit that I wouldn’t understand [as well] because I have a language barrier.”
Others recognized the value that being in-person with their liver specialist had in the explanation of medical processes. One participant recalled, “Today my doctor drew some diagrams to explain things and now I have them to take home to my family. And I know that I could probably still do this over a screen, but I like having a paper copy and I feel like it’s easier for us to have the back and forth if I need a more involved answer.”
Theme 3: Perceived challenges of virtual care
The majority of participants (n = 73) had no concerns with privacy related to technology use and virtual care. They expressed confidence that because the care would be provided by “the health system,” their medical records would remain secure and confidential in a manner that is “no different than other health records.” Some participants had privacy concerns related to the security of information shared via the internet. Specifically, they were reluctant to engage in future virtual care with their liver specialists because of past issues with online banking and shopping. For instance, one participant recalled the issues his wife had when her online banking information was compromised stating, “My wife has been hacked in the past, and this took a huge toll on her … we avoid technology now.”
Multiple participants reported that although they were interested in the prospect of virtual care, it would be not be possible due to a lack of access to technology. Several participants stated that they did not have access to a smart phone, tablet, or computer, with others unsure if their home wireless connection would be strong enough to support a virtual visit. Even those with access to devices that could enable virtual visits and a strong wireless connection felt uncomfortable with independently accessing a virtual visit. One participant stated, “I’m just not good with technology. Even with depositing a check online, I struggle ….”
While many participants acknowledged the potential benefits associated with attending a visit with their liver specialist, virtually, they identified instances when an in-person appointment would be preferable. Many participants stated that they would prefer to attend an in-person appointment when they were to receive serious news from their liver specialist. They believed that being in-person with their provider in the clinic would result in feeling “more of a personal connection” and “better support” from clinic staff including their liver specialist. One participant felt that for receiving serious news, “in person is much better because you can see a more detectable reaction from the doctor.” Another participant was concerned about the potential for their family to witness serious news delivered via a virtual visit. She said, “In-person visits would be better. I have two daughters and knowing about my disease scares them, so the less they know the better … [if I had a virtual visit], my daughters would be looking over my shoulder. We want to keep bad news separate, so it doesn’t affect my daughters, we can’t hide it as well at home.” Another participant shared that for serious news “in person [is preferable] because we’re talking about my life and I need the human element. I feel like when you make things this important virtual, there is less respect and dignity. It just becomes impersonal.”
Discussion
The present study is among the first to evaluate the perspectives of patients with CLD on the use of virtual care, using a mixed methods design. Findings of this study suggest that patients are generally receptive to receiving virtual care from their liver specialists, especially when they are younger in age, live at further distances from the clinic, and have a more stable health status. It was interesting to see the trend for those with higher Child–Pugh scores (i.e., those who are sicker) to be less accepting of virtual care. The reluctance for virtual care in selected patients was supported by the qualitative portion of this study, which also revealed a variety of other reasons among those with lower acceptance of virtual care, including privacy issues, lack of access to internet/devices, lack of technological literacy, and the perceived lack of human touch.
These findings are consistent with other studies that have assessed the barriers and facilitators to virtual care.24,25 One study assessing patient perceptions of virtual care found that one of the major benefits included reduced burden of health care access (i.e., convenience, comfort, and not having to leave home/travel), whereas some of the most common disadvantages to virtual care included technological hurdles and touchless examinations.26 Another study of 32 primary care adult patients found that the perceived benefits of virtual care were convenience and decreased costs, and the preference to receive more serious news virtually so they could be around loved ones.15 Similar to a systematic review by Kruse and Krowski,16 our findings indicate that there are significant sociodemographic factors such as age and household income that must be considered in implementing virtual care. In our cohort, older patients and those with household income <$15,000 were less willing and able to see their liver specialist in this manner.
Other jurisdictions have noted satisfactory management of gastroenterology, disease, and symptoms via virtual care, with this modality providing the benefit of increased patient self-awareness and disease management.17 Stotts et al.27 noted several advantages to virtual care in patients with cirrhosis. They noted that patients with cirrhosis who take diuretics or lactulose to manage serious symptoms associated with their disease often avoid taking their medication before traveling to an in-person appointment. Although this action decreases their need to make frequent stops to void, it may inadvertently lead to cognitive impairment or worsening ascites. This finding was confirmed by the qualitative accounts of several of our participants who recalled pausing their medication ahead of appointments to enable comfort during travel.
Since this study was performed, the world landscape has changed. The pandemic has resulted in many medical centers around the world canceling and postponing in-person outpatient medical visits, thus running the risk of disease progression and poorer health outcomes. As such, health care delivery is having to rapidly evolve to meet the ever-changing challenges posed by COVID-19. The use of virtual care, previously a choice, and now a necessity, holds promise in optimizing outpatient care in light of the restrictions as it maintains important aspects of communication without risking the safety of patients and health care providers.28 Over the past 6 months, virtual care has been readily adopted by a number of countries worldwide, including China, the United States, and Australia.29,30 We had the unique opportunity to conduct this study before COVID to understand our participants true perceptions on virtual care delivery, not clouded by the pandemic.
The study must be considered in the contexts of its strengths and limitations. Notably, it is likely that the study we have carried out will not be repeatable without the bias of the influence that COVID has had on virtual care. With regard to limitations, first, there was underrepresentation of lower income participants and most patients had income levels >$80,000. This higher income bracket brought with it higher education, and more familiarity with the internet than the general population. Second, the qualitative data were collected in a survey rather than an interview format, and as such, we were unable to explore or further contextualize responses. This was a purposeful choice over semi-structured interviews in recognition of the costs and time associated with transcription as well as the large sample size of the study. Finally, this study was only conducted in CLD patients, very few with advanced cirrhosis, and therefore, the results are not generalizable more broadly. Future studies could advance the current work to explore patient preferences for virtual care delivery across a broader range of patients, including underserved populations and those with varied technological skills. Moreover, future work could be expanded to assess health care provider perceptions.15,16,31
Conclusions
In summary, in the era of COVID-19, where virtual care has become a necessity, a tailored approach that is mindful of the individual patient’s health status, ease of access to technology, and preferences must still be considered. As Serper et al.32 pointed out, the COVID-19 pandemic has accelerated the demand for quality virtual care and the area of CLD is highly amenable to providing care via this medium. An observational study conducted by Guarino et al.33 in Italy at the height of the first wave of the pandemic in Spring 2020 found that 75% of outpatient visits for patients with CLD could be completed virtually with no compromise on quality of care. Although there are many potential benefits of virtual care to both the patient and the health care system, there are instances when in-person care may be preferred, or if not possible, where additional support may need to be provided. Our learning about patient preferences and virtual care for CLD will no doubt continue to grow in the coming months. Learnings from this study can contribute to the discussion around the CLD virtual care framework.
Acknowledgments
The authors acknowledge the contributions of the participants of this study who were generous to share their experiences.
Disclosure Statement
The authors declare that there is no conflict of interest regarding the publication of this article.
Funding Information
This work was supported by Alberta Innovates Health Solutions (AIHS) (RES0043017).
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