|Ahead of print publication
Impact of COVID-19 Pandemic and Resultant Lockdown in India on Patients with Chronic Rheumatic Diseases: An Online Survey
Arvind Ganapati1, Shivraj Padiyar1, Aiswarya Nair2, Mahasampath Gowri3, Upasana Kachroo4, Aswin M Nair1, Sangeetha Priya1, John Mathew1
1 Department of Clinical Immunology and Rheumatology, Christian Medical College Hospital, Vellore, Tamil Nadu, India
2 Department of Psychiatry, Christian Medical College, Vellore, Tamil Nadu, India
3 Department of Biostatistics, Christian Medical College, Vellore, Tamil Nadu, India
4 Department of Physiology, Christian Medical College, Vellore, Tamil Nadu, India
|Date of Submission||20-Aug-2020|
|Date of Acceptance||27-Aug-2020|
Department of Clinical Immunology and Rheumatology, Christian Medical College Hospital, Ida Scudder Road, Vellore - 632 004, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Background: Impact of COVID-19 pandemic and consequential lockdown in India, on patients with chronic rheumatic diseases (CRD) pertaining these components of interest: (a) physical health, (b) mental health, (c) facets of social well-being, (d) health-care accessibility, and (e) COVID-19 related knowledge, attitude, and practices (KAP) was assessed.
Methods: An online/onsite self-reported questionnaire-based cross-sectional survey was utilized to capture responses during May 20, 2020, to June 6, 2020, from CRD (both inflammatory and non-inflammatory) patients satisfying eligibility criteria, at a tertiary hospital in India. Adverse impact was defined as strong agreement/agreement on Likert scale to an impact on the individual components of interest.
Results: From 1533 completed responses analyzed, adverse impact was noted on physical health (32.3%), mental health (42.9%), social health (54.8%), occupational life (55.9%), and financial condition (54.4%). Self-reported COVID-19 diagnosis (1.4%), flare/possible flare of CRD (41.3%), and symptoms of mental distress (64%) were also reported. Awareness and utilization of tele-video consultation (TVC) were 27.3% and 11.2%, respectively, with 89.9% expressing difficulty in procuring medication. COVID-19 KAP assessment revealed awareness of COVID-19 suspect symptoms and safety practices to be >60% and >70% respectively, with safety adherence being >75%.
Conclusion: Majority of respondents reported adverse impact on social health, occupational life, financial condition, and interruption of CRD management, possibly complicated by the lack of awareness and low utilization of TVC. Although mental distress was greatly reported in the participants, a general preponderance toward self-education of current scenario and safety adherence was noted, indicating a favorable reception of future health-care directives.
Keywords: COVID-19, chronic rheumatic diseases, health, pandemic, rheumatology, tele-health
|How to cite this URL:|
Ganapati A, Padiyar S, Nair A, Gowri M, Kachroo U, Nair AM, Priya S, Mathew J. Impact of COVID-19 Pandemic and Resultant Lockdown in India on Patients with Chronic Rheumatic Diseases: An Online Survey. Indian J Rheumatol [Epub ahead of print] [cited 2021 Jan 27]. Available from: https://www.indianjrheumatol.com/preprintarticle.asp?id=298051
| Introduction|| |
Coronavirus disease 2019 (COVID-19) outbreak, caused as a consequence of a viral affliction, was declared a global pandemic by the World Health Organization (WHO) on March 11, 2020. The Government of India, with a view to flatten the epidemic curve and avert over-burdening of health-care facilities, enforced a nation-wide lockdown, effective March 25, 2020. While the importance of social distancing cannot be emphasized enough, as it helps reduce spread substantially, the resultant diminution in access to interaction with family and friends, recreational exchange, and overall attenuation of the social support system could lead to feelings of isolation, resulting in emotional and mental health issues., Amidst the various socioeconomic disruptions, encountered by the populace, modification of interventional strategies, especially in the health-care sector remains crucial. Severe disruptions in the order of management were observed with regard to chronic diseases, that require frequent monitoring and optimal titration of treatment. An alarming rise was observed in the number of complications related to chronic diseases, due to compromise of both primary and secondary care. Such indirect implications of the pandemic, on patients with chronic rheumatic disease (CRD) conditions are difficult to estimate. In addition, patients with CRD are considered to be at a higher risk for COVID-19, owing to the state of their immune system and super-added influence of immunosuppressive medications.,,,
Interruption of CRD care could result in disease flares and subsequent morbidity or mortality. Understandably, there has been a sudden increase in requests for tele-consultations from patients. Telehealth has an important role to play during this pandemic; to unburden medical resources, ensure continued care to patients and reduce physical contact throughout the process., With respect to medication, an acute shortage of various prescription drugs during lockdown, led to eventual discontinuity of the treatment by many patients. Such scenarios were precipitated by the recent upsurge in the demand of hydroxychloroquine (HCQ), following its proposed role as a prophylactic/therapeutic tool in the treatment of COVID-19. Travel restrictions during lockdown made it virtually impossible for patients to seek treatment. Since rheumatology care in India is predominantly delivered to the urban areas, non-urban populations could face further deterioration of health due to the complete loss of access.
In light of these imposing issues during the on-going pandemic, we aimed to assess the impact of COVID-19 and the resultant lockdown on patients with CRD, with regard to following aspects: (a) physical health, (b) mental health, (c) facets of social well-being (d) health-care accessibility, and e) COVID-19 knowledge, attitude, and practices (KAP).
| Methods|| |
The study was approved by the Institutional Review Board (IRB) and Ethics Committee of Christian Medical College Hospital (CMCH), Vellore, India, (IRB Min No 12861 dated May 18, 2020) and complied with the declaration of Helsinki. This was a descriptive cross-sectional observational study, where in participants were invited to voluntarily fill a self-reported survey questionnaire.
Survey questionnaire design
A novel questionnaire was designed, consisting of 58 questions under the five categories as listed before. The questions were descriptive in nature and sought responses as multiple-choice, Likert scale and matrix Rating Scale. The questionnaire was devised in English, by four investigators, including a psychiatrist and a social worker. It was reviewed for face and content validity by an additional team of investigators and 10 rheumatology patients. The revised questionnaire was translated into six other Indian languages (Hindi, Bengali, Tamil, Telugu, Malayalam, and Kannada). The translations were reviewed by two language experts for the accuracy of each language.
Construction of the invitee list
The E-mail addresses and mobile numbers of patients under follow-up, from May 18, 2010, to May 18, 2020, of Rheumatology Department of CMCH, were obtained from the Department of Computerised Hospital Information Services of CMCH. The contact list obtained was anonymized from the source, i.e., names and hospital numbers were delinked from the patient contact details. After the removal of duplicates and verification of contacts, final invitee list was constructed [Figure 1].
|Figure 1: Flow-chart showing the methods of recruitment in the current study and creation of final list of completed responses for analysis|
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Conduct of survey
The survey was non-incentive driven, invitational only and closed in design, rolled out through two methods [Figure 1], namely online portal-based (SurveyMonkey® Individual Premium), and onsite hospital-based medium. The administration of the survey was performed in two phases. Phase I (Pilot) was carried out from May 20, 2020, to May 24, 2020, wherein, a small sample of invitations (200 E-mail, 1000 SMS web-link and 5 on-site) were sent, to identify any technical malfunctions in the survey. The larger phase II was carried out from May 25 2020, to June 6, 2020. First checkpoint in the survey was fixed in the settings, to limit the survey response to only-one per E-mail or SMS invite for every responding device, based on IP address. For the onsite survey conducted in out-patient clinics and in-patient facilities of rheumatology department of CMCH, a printed questionnaire or a mobile kiosk device (linked to SurveyMonkey®) were utilized. The responses recorded were stored in the SurveyMonkey® database in the real time and responses recorded through the printed questionnaire were manually entered in to the SurveyMonkey® database at a later time-point. A reminder was sent to those online invitees who had partially responded or failed to respond after three days of receiving the initial invite.
E-consent and written informed consent were obtained from online and onsite participants, respectively. To further maintain anonymity, personal identifying information was not sought from respondents and storage of E-mail and/or IP addresses was disabled on the survey settings. The online questionnaire was laced with adaptive questioning strategy and the respondents were able to review their answers till submission.
Study eligibility criteria
Consenting individuals ≥18 years were allowed to complete the questionnaire if they had been diagnosed for one of the following CRD: Rheumatoid arthritis, undifferentiated inflammatory arthritis, psoriatic arthritis, axial spondyloarthritis (AxSpA), Sjogren's syndrome, systemic lupus erythematosus (SLE), anti-phospholipid syndrome, systemic sclerosis, inflammatory myositis, mixed connective tissue disease (CTD), undifferentiated CTD, overlap CTD, CTD-associated interstitial lung disease, polyarteritis nodosa or medium vessel vasculitides, ANCA associated vasculitides, small vessel vasculitides, Takayasu's arteritis or large vessel vasculitis, immunoglobulin A (IgA) vasculitis, gout, calcium pyrophosphate deposition disease, juvenile idiopathic arthritis, enthesitis-related arthritis, Behcet's disease, sarcoidosis, IgG4-related disease, osteoarthritis (OA), fibromyalgia, and osteoporosis. All completed responses without any time-stamp signature/statistical correction were included for the final analysis.
Skip logic function of SurveyMonkey® was utilized to lead the respondents who satisfied the exclusion criteria of the study to a disqualification page. Respondents, who were not patients or were friends/relatives of a current/deceased CMCH rheumatology patient, were barred from responding further on the survey. Respondents not meeting the age requirement (≥18 years)/non-consenting individuals/re-entrants using the link on 2nd device were also excluded, similarly. Partial respondents were removed using a filter on SurveyMonkey® during the analysis.
To describe the impact of COVID-19 pandemic and its resultant lockdown on the components of (a) physical health, (b) mental health, (c) facets of social well-being (d) health-care accessibility, and e) COVID-19 KAPs.
To estimate and identify the predisposing associations of baseline characteristics of CRD patients on (a) overall adverse impact of COVID-19 pandemic and lockdown assessed by overall impact score (described below), (b) overall awareness and adherence to COVID-19 related safety practices assessed by the overall awareness and adherence scores, respectively, (described below).
The overall impact score was the summation of individual impact scores of COVID-19 on physical health, mental health, social health, overall health, occupational life, family life, and financial condition, reported by the CRD respondents on a matrix rating question through the Likert scale. Scoring for the responses of the Likert scale on the above-mentioned individual components of the matrix question was performed as strong disagreement = 1, disagreement = 2, neutral = 3, agreement = 4, and strong agreement = 5.
The overall awareness score was the summation of individual scores of four components of awareness in relation to safety practices concerning COVID-19, i. e, social distancing, hand hygiene, respiratory hygiene, and self-quarantine, as reported by the respondents. The overall adherence score was the summation of individual scores for adherence in relation to the above-mentioned safety practices, reported by the respondents. Scoring for the responses of awareness of safety practices was performed as Yes = 1 and No = 0 and for the responses of adherence to safety practices was performed as No = 1; Yes, to some extent = 2; Yes, to the best of abilities = 3; Yes, at all times = 4.
Adverse impact was defined as reporting of strong agreement/agreement on the Likert scale to impact on the components of physical health, mental health, social health, overall health, occupational life, family life, and financial condition, by the respondents. Significant adverse impact was defined as >50% respondents reporting strong agreement and agreement for any of the above-mentioned individual components.
Descriptive statistics such as percentages, mean ± standard deviation, and median with inter-quartile range (IQR) were performed for the responses to the questions. Associations between respondent baseline characteristics and overall impact, awareness, and adherence scores werefirst examined in the univariate analysis using the Chi-square tests, independent t tests, or analysis of variance, as applicable (data not shown). Multivariable linear regression models were used to estimate the least-squares means (with 95% confidence interval) for the above-mentioned three scores of interest, using baseline characteristics with P ≤ 0.05 in univariate analysis. Statistical analyses were performed using the STATA IC 16. Graphical representation was performed using Wavemetrics IgorPro.
The conduct and reporting of the study results conformed to Checklist for Reporting Results of Internet E-Surveys and Strengthening the Reporting of Observational Studies in Epidemiology statement, as shown in [Figure 1].
| Results|| |
Survey respondent profile
Of the 5043 respondents, 1533 completed the survey with average completion time being 27 min and English the most preferred language choice (95.5%). The median age of the respondents was 39(19) years, with 53.9% being female. Highest proportion of respondents belonged to the upper middle class (37.4%), followed by upper class (30.7%) while a lesser proportion were seen to belong to lower middle class (15.5%), upper lower class (15.7%), and lower class (0.7%) of socio-economic stratification as assessed using the modified Kuppuswamy classification. Responses were received from all the regions in India (92.6%) and some parts of Bangladesh (5.8%) and Nepal (0.5%). 63.2% respondents belonged to the urban areas while the remaining 36.8% hailed from semi-urban/rural areas. RA emerged as the most common CRD (41.2%), followed by AxSpA (22.9%) and SLE (12.5%). With regard to drug use, 46.2% reported calcium supplement intake, followed by 33.2% reporting HCQ use. In addition, 37.2% respondents were scheduled for a review visit for rheumatology care during the lockdown [Table 1].
|Table 1: Depicting respondent profile from the completed responses obtained in the study|
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Impact on physical health
Self-reporting of COVID-19 diagnosis was positively done by 1.4% of the respondents [Table 2], while 15.4% reported “suspect” symptoms of COVID-19. 20.3% respondents reported resurfacing of CRD symptoms, while 21.3% reported experiencing symptoms possibly relating to their CRD, during lockdown. Most commonly reported symptoms were pain (40.3%), swelling (5.5%), and stiffness (4.2%). Although 47% of the respondents reported full compliance to medication, 34.9% described partial compliance while 11% reported discontinuation of medication, of which 29% cited “inability to meet a healthcare professional to seek advice” as a cause for nonadherence.
|Table 2: The characteristics of the survey respondents self-reporting to a positive Coronavirus disease 2019 diagnosis|
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Impact on mental health
Sixty-four percent respondents reported to facing the symptoms of emotional/mental dysfunction, with anxiety (28.6%), sadness (26%), and loss of enjoyment (22%) reported as the most common symptoms. While 34.5% respondents who experienced such symptoms admitted to feeling disruption of daily activities, another 17.9% agreed to requiring medical attention for the same. The most common causes cited for such symptoms were “uncertainty of the future” (55.4%) and “risk of COVID-19” (34.8%).
Impact on social well-being
With regard to the impact of social life, disruptions were reported most commonly in areas such as socializing and relationships (71.2%), familial interactions (57.3%), and travel (46.2%). Interactions with immediate family or the extended family were affected most by the COVID-19 pandemic and lockdown as reported by 46.3% and 27.8% respondents, respectively.
Impact on health-care accessibility
In all, 16.4% met a health-care provider (HCP) for their CRD-related symptoms during the lockdown. Among them, 39.0% met their primary rheumatologist at our department, while 30.3% met a local rheumatologist and 18.5% a local physician. Partial or complete resolution of concerns was reported by most respondents (83.5%) who corresponded with a HCP during the lockdown. A total of 20.5% respondents reported being turned away by a health-care facility/HCP while seeking treatment for CRD symptoms during the lockdown. Only 27.3% described awareness of tele-video consultation (TVC) facilities being offered by our department, although TVC was reported as the most preferred way (35.8%) of connection with a rheumatologist during the pandemic. With regard to procuring medication and access to investigations for CRD monitoring, 89.9% and 36.1% of respondents reported difficulty for each aspect, respectively. Increase in the cost of medication was also reported by 28.6% participants, while HCQ (69.4%), adalimumab (64.3%) and mycophenolate mofetil (59.3%) remained the three most difficult to procure drugs, during the lockdown.
COVID-19 knowledge, attitude, and practices
Ninety-nine percent respondents displayed the awareness of COVID-19 being a viral affliction with 92.7%, 86.5%, and 75.2% identifying fever, breathing difficulty, or cough as the most common symptoms of COVID-19, respectively. Regarding safe practices related to COVID-19, 90.5% gave preference to social distancing while hand hygiene, home isolation, and respiratory hygiene were also reported to be highly important [Figure 2]. Fear of contracting COVID-19 was low (13.7%) but majority (52.6%) of the participants felt unsure whether they would fall ill. The primary cause for this fear was reporting of perceived low immunity (64%). Most respondents admitted to being partially or sufficiently prepared in the eventuality of a mass spread (69.2%). A high percentage of respondents (69.2%) agreed that the pandemic would “stay with us for a long time, we have to learn to live with it.” In addition, a majority (55.3%) expressed fear, to return for follow-up visits to the rheumatology department, following improvement of the current situation.
|Figure 2: Showing the respondents' data on their adherence to safe practices to avoid COVID-19|
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Adverse impact was reported by the respondents on their overall health (29.2%), physical health (32.3%), familial (41.2%), and mental health (42.9%). Similarly, significant adverse impact was reported to in relation to occupational (55.8%), social health (54.8%), and financial (54.3%) facets of life [Figure 3].
|Figure 3: Showing overall impact of COVID-19 on components of health, well-being and other facets of life among the respondents|
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Associations for overall impact, awareness, and adherence scores by multivariate analysis
In the multivariate analysis, it was seen that respondents with age <60 years, educational status of middle school completion, monthly family income <52,000 Indian national rupees (INR), pre-existing mental health issues, and reporting symptoms of CRD during the lockdown were independently associated with higher overall adverse score (P < 0.001). Respondents of male gender, monthly family income bracket of 13,000–20,000 INR, and suffering from a CRD other than CTD had independent association with lower overall awareness score (P< 0.001). Respondents with monthly family income <7800 or >26,000 INR and suffering from SLE had independent association with lower overall adherence score (P = 0.02) [Table 3].
|Table 3: Results of multivariate logistic regression analysis for overall impact, awareness, and adherence scores in respondents of the survey|
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| Discussion|| |
In this predominantly online, survey based cross-sectional study, the highest significant adverse impact of COVID-19 and the consequential lockdown, was noted on the occupational life of CRD patients which was followed by social health and financial impairment. This observation echoes with the influence of the pandemic on the economy and employment rate of the general population, both nationally and globally.,,, An interesting finding was the adverse impact on mental and physical health, which contrary to our initial assumption, were reported in a relatively lower number of respondents. This observation could be due to multiple reasons. At the time when the responses were captured, the COVID-19 case burden in India was still low (77 cases/million population and 150 cases/million at the start and end of the survey, respectively). Second, a lag period is expected in the appearance of physical symptoms following the interruption in access to medication and drop in drug compliance. The impact on occupational life and financial impairment are relevant in determining mental health, especially in a developing country, as studies have traced a bi-directional relationship between financial instability and mental illnesses whereby both are seen to predispose and maintain each other., Therefore, the economic and social fissures, worsened and exposed by the pandemic can have immediate, intermediate, and long-term implications on mental health.
When overall impact score was assessed within patient groups, categorized based on their CRD (limiting our focus to diseases with respondent number ≥30), the sub-group reporting the maximal adverse impact was that suffering from ERA which had the highest impact on overall health, physical health, mental health, occupational life, and financial condition. This response could be attributable to the disruption experienced in supply chain of biologicals during the pandemic. Similarly, patients suffering from OA (58.51%), AxSpA (51.6%) and fibromyalgia (51.4%) noticed the highest increase in their physical symptoms related/probably related to CRD. This could either be due to the modulation of sensitisation of central and peripheral pain pathways by mental stressors as seen in OA and fibromyalgia, or due to disruption of supply chain of biologicals in AxSpA, during the lockdown.
As COVID-19 affliction in CRD patients (seen in 1.4%) was based on self-reporting and no validation of diagnostic information could be made, this statistic cannot be considered as a true representation of the actual incidence/prevalence of infection in CRD patients. Confirmation of such statistics would require cross-assessment of COVID-19 and rheumatology registries.,
Disruption to healthcare accessibility, reported in the form of inability to meet a rheumatologist by 38.9% respondents, difficulty in procuring medications by ~90% respondents and paying higher than usual price for medication in 28.6% respondents, was observed. Lack of awareness regarding TVC services was found to be high at 72.6%, while utilization rate of the same was low at 11.2% among respondents. Telemedicine in India is still in its nascent phase and with the emergence of COVID-19 pandemic, both physicians and patients exhibit a slow but steady transition into it, for continued care.,
Regarding COVID-19 KAP, it was reassuring to note that patient knowledge about symptoms, awareness of and adherence to safe practices and preparedness to face potential rapid escalation in outbreak status, remained high. However, majority respondents expressing fear in relation to meeting primary rheumatologist for future visits was a cause for concern.
The general opinion concerning the current survey in the respondent pool was positive, as 77% expressed a feeling of reassurance and a sense of contact with the HCP. The survey was designed to be semi-informative, to benefit respondents.
The penetration of this survey into the lower socio-economic sections of society was incomplete, owing to their limited access to technology, and therefore, the survey lacked generalizability. In anticipation of the same and to overcome this respondent bias, an onsite arm had been added; but considering an overall decrease in footfall of patients (85%–90%) during the same recruitment period, the penetration still remained low. Similarly, to overcome the language barrier, improve acceptance and completion rate, the questionnaire was provided in multiple languages (chosen based on patient profiles from the department). Although the completion rate among respondents remained low at 30%, given the challenges, a self-reported online survey still remains the best way to reach out to the intended population during an infectious pandemic. There is also a possibility that patients with higher perceived difficulty would be more likely to respond to the current survey. This study utilized a novel in-house questionnaire to capture the responses of emerging unique problems of CRD patients in India during the initial phases of COVID-19 pandemic and lockdown, based on the information communicated to us by our patients before the survey was undertaken.
As anticipated, majority of the respondents reported notable interruption to disease management, citing difficulty in access to health-care facilities, medication and over-all monitoring of continued care and emerging symptoms. In addition, a major section of respondents also stated a significant adverse impact on their social health, occupational life, and financial condition. Owing to the increase in the mass media coverage and public availability of information, knowledge regarding COVID-19, and attitude towards safety measures and their adherence was high, which given the current global health scenario, is essential. Patient insights from this study revealed the lack of awareness regarding available tele-consultation services, an area which requires impetus for optimization of healthcare during the pandemic.
The authors would like to acknowledge Dr. Pratyusha Manikuppam, Dr. Silas Vinay Rao, Dr. Chandu A S, Dr. Prabhu Vasanth, Dr. Mohammed Tanvir Zafar, Dr. Avnish Jha, Dr. Daisey Doley, Dr. Abhilasa Manwatkar and Dr. Anjana Varier for their intellectual input and help with data collection.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]