Virtual consultation in lupus during the COVID-19 pandemic – patients' perspective
Keerthi Talari
Department of Rheumatology, Yashoda Hospitals, Secunderabad, Telangana, India
Correspondence Address:
Dr. Keerthi Talari
Yashoda Hospitals, Alexander Rd., Kummari Guda, Shivaji Nagar, Secunderabad - 500 003, Telangana
India
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/injr.injr_118_21
Background: Virtual consultations have become the norm during the COVID-19 pandemic with disruption of regular outpatient services due to fear of infection and travel restrictions.
Methodology: A telephonic survey was conducted among 54 patients with systemic lupus erythematosus (SLE) who sought virtual consultations to understand patients' perspective about these consultations.
Results: 42/54 (77.78%) patients had inactive disease. Most patients (42/48 [87.5%]) did not visit the hospital for fear of COVID, whereas 58% of them also had travel restrictions. About one-fourth of individuals felt that consultation from home was comfortable (12/48 [25%]), cost-saving (14/48 [29.16%]) and they preferred virtual over physical consultation (14/48 [29.16%]). The satisfaction levels of patients during the process of booking appointment, the consultation process, and postconsultation queries also seem adequate.
Conclusion: Virtual consultations in SLE are a feasible and conceivable option, especially for those with inactive disease on stable treatment.
Keywords: India, lupus, patients' perspective, systemic lupus erythematosus, telehealth, virtual consultation
The COVID-19 pandemic and the subsequent nation-wide and then state wise lockdown in the last 1 year have notably balked access to medical care. For diseases such as systemic lupus erythematosus (SLE), regular follow-up, investigations, and monitoring are necessary to recognize early flares and institute appropriate treatment. However, due to travel restrictions imposed many patients missed their scheduled visits. Adding to that, perceived fear of contracting severe COVID-19, inability to get diagnostics, and difficulty in access to certain medications added to the troubles of many patients.
In the wake of pandemic and disruption of regular outpatient services, many rheumatologists have switched to virtual consultations. In a study performed at a tertiary care center in India, in a socioeconomically marginalized group, 76.1% of all patients who were given a virtual consultation considered it better than in-person consultation.[1] The benefits of telemedicine have been outlined as faster and timely access, cost-saving with lesser risk of exposure to infections. However, awareness and utilization of virtual consultations as a means in rheumatic diseases are low.[2] In this study, we sought to understand the patients' perspective of virtual consultation in lupus.
MethodsThis is a retrospective observational study conducted in a tertiary care, corporate hospital. This study was performed in accordance with the ethical standards of the research committee and with the 1964 Helsinki declaration and its later amendments. Online video consultations were given at our hospital from April 1, 2020. The platforms used for these consultations were zoom video communications till July 2020 following which it was either an indigenous hospital-based software or WhatsApp mobile messaging application. Prescriptions were sent either to the patient's registered mail id or WhatsApp of patient's registered mobile number. Any further queries post consultation was answered via WhatsApp. Study was approved by IEC, Yashoda Academy of Medical Education and Research, IEC number is RP-01/2021 obtained on 25.02.2021.
Survey dissemination
All SLE patients who underwent a virtual video consultation between April 1, 2020 and May 31, 2021 were included from the hospital's medical records. Demographic details and their disease status were collected. As dissemination of questionnaire on social media platforms or through E-mail may not capture all responses and the literacy levels of a patient may hamper them form answering the survey, we preferred a telephonic survey by narrating the questions, answer responses and recording them manually.[3] After an informed consent, a telephonic interview was conducted according to a standard pro forma by our physician assistant. Patients were clearly explained about the survey, the utility of it and how data anonymity would be maintained before obtaining consent and proceeding with the interview.
Survey design
The questions asked and the answer responses that a patient could choose are shown in [Table 1]. We sought to assess the awareness of patients about availability of telemedicine as a platform for consultation, how patients gained awareness about virtual consultation and why they preferred it over a physical consultation through our questions 1 and 2. Patient's satisfaction in booking appointment, consultation process, and the subsequent steps were recorded on a scale of 10 in question 3. Patient's preferences and ways to improvise were noted in questions 4 and 5. In order to record all possible responses, the survey was also kept open ended for additional responses.
Table 1: Questions and the answer choices in the telephonic survey conductedStatistics
The continuous variables are expressed as mean ± standard deviation (SD) or median with range. The categorical variables were expressed as percentage.
ResultsPatient characteristics
A total of 116 video consultations were given for 54 SLE patients. 51 (94.4%) of them were females. The mean (± SD) age was 26.6 (±8.09) years. Except for 12 patients, the clinical SLE disease activity index (SLEDAI) (SLEDAI 2K without anti ds DNA and complements) was zero for the rest. The median clinical SLEDAI of the remaining 12 patients was 9 (range: 2–29). Three patients had rashes, two had leukopenia, one had thrombocytopenia, two had alopecia, two had arthritis, four patients had nephritis and one had central nervous system (CNS) vasculitis and seizures. Four out of these twelve patients were called to the hospital for further evaluation and management, three of whom were admitted. One patient with CNS vasculitis, seizures, and nephritis was managed at a district level private hospital till she was stable and then shifted to our hospital where further treatment was given.
Choosing virtual consultations and the reasons behind
Forty-eight out of the 54 patients responded to the telephonic interview. 11/48 got to know about the option of video consultation when they called the hospital for a regular physical appointment, 14/48 called the hospital to find out if video consultation was a possibility, 23/48 found out through their rheumatologist (or the rheumatologist's assistant) while one got to know through a friend who also has SLE. 42/48 opted for a video consultation due to fear of COVID, 28/48 due to lockdown restrictions and inability to travel, 12/48 for the comfort of consultation from home, 14/48 opted as it was cost-saving and saves the travel expenses, 2/48 as they were quarantined due to COVID infection, 4/48 as they could not come due to increased work hours and 6/48 assumed that their rheumatologist is not available for physical consultations.
Degree of satisfaction with virtual consultations, patient preferences, and suggestions
The level of satisfaction/ease for the process of online consultation and subsequent steps were as follows (median with range).
Consultation process (booking appointment, logging on to the consultation platform, audio/video quality) – 8 (4–10)Time taken to get to speak to your rheumatologist – 9 (6–10)Time given for consultation – 9 (8–10)Clarity of prescription – 10 (8–10)Ease of obtaining medications – 7 (2–10)Ease of getting investigations done – 8 (4–10)Prescription-related queries that have been clarified postvideo consultation – 10 (7–10).14/48 patients considered a video consultation is more preferable for them compared to a physical consultation as it was comfortable, cost-saving, safe, and they would prefer coming to the hospital only if necessary. When asked for additional suggestions to improve video consultations, six of them opined that it would be better if they could get an emergency video consultation with their rheumatologist 24 × 7 as they fear that any other doctor will not be able to handle any emergency of theirs. There was no major difference in the responses of those who had active disease and those who were in remission, except that all twelve with active disease preferred physical over virtual consultation [Figure 1].
Figure 1: Infographic on the survey about virtual consultations in lupus patients DiscussionIn this retrospective, survey-based, observational study, 77.7.8% patients who opted for virtual consultations were those who had an inactive disease or already were instituted on appropriate therapy. Only about 1/4th of these patients had an idea that virtual consultation is a possibility and the rest were informed by the hospital or the rheumatologist. Most patients did not visit the hospital for fear of COVID, whereas 58% of them also had travel restrictions. About one-fourth individuals felt that consultation from home was comfortable, cost saving and they preferred virtual over physical consultation. The satisfaction levels of patients during the process of booking appointment, the consultation process and post consultation queries also seem adequate. Procurement of medications, however, seemed a daunting task for especially those in remote areas.
Telemedicine defined as “The delivery of health-care services, where distance is a critical factor, by all health-care professionals using information and communication technologies for the exchange of valid information for diagnosis, treatment, and prevention of disease and injuries, research and evaluation, and for the continuing education of health-care providers, all in the interests of advancing the health of individuals and their communities”[4] has come a big way in all aspects of medical care; however, virtual consultations defined as a process of getting a medical opinion without visiting the specialist in person, has never been the dernier cri in the precorona era.[5] This is probably because virtual consultations do not establish an emotional rapport, physical examination which is an important key to diagnosis is lacking and there could be privacy and confidentiality issues.[6] Furthermore, for most of our patients using digital platforms may be of a tall order. However, virtual consultations during the current pandemic have become inevitable. The Ministry of Health and Family Welfare had also issued the guidelines for registered medical practitioners to practice telemedicine in March 2020.[7] Guidelines for practicing telemedicine for certain chronic diseases such as diabetes in India have been published.[8]
In a multicenter questionnaire-based study conducted in India, 54% of 1040 lupus patients missed their scheduled visits and 25.5% had worsening of SLE symptoms.[9] Virtual consultation seems a viable option for these individuals.
Virtual consultations in lupus could be improved by – (a) a health-care worker guiding the virtual consultation – recording vitals, understanding the symptoms, (b) providing a prior symptom checklist to the patient along with some open-ended questions so that patient can be prepared what to communicate in the virtual consultation, (c) the necessary investigations for regular monitoring (especially for those in remission) can be preinformed so that the prescription can be explained in the same consultation.
The limitation of this study is that the survey questions had a face validity, but no pilot testing was done. A limited group of lupus patients were surveyed. Studies with better social dissemination covering a wider population obtaining virtual consultations could give us a true picture of patients' perspective. However, by conducting a telephonic interview and narrating the questions and answer responses in an understandable language, responses from even the underprivileged or illiterate who may not be able to or may not have access to social media platforms or E-mails were also interviewed. A true denominator as to how many patients were reached is also available.
To conclude, virtual consultation in SLE seems feasible and conceivable. For those with inactive disease and stable treatment, virtual consultation is comfortable, cost, and time-saving. To the best of our knowledge, this is the first study to understand patient's perspective about virtual consultations in a chronic disease like SLE.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References
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