|Year : 2022 | Volume
| Issue : 3 | Page : 87-91
Barriers to health-care access amid the coronavirus disease 2019 pandemic in children with non-coronavirus disease illnesses from India
Abhineet Mathur, Priyanka Meena, Jerin C Sekhar, Puneet Kaur Sahi, Aashima Dabas, Mukta Mantan, Sangeeta Yadav
Department of Pediatrics, Maulana Azad Medical College and Associated Lok Nayak Hospital, New Delhi, India
|Date of Submission||26-Sep-2021|
|Date of Decision||10-Dec-2021|
|Date of Acceptance||19-Dec-2021|
|Date of Web Publication||03-Nov-2022|
Department of Pediatrics, Maulana Azad Medical College and Associated Lok Nayak Hospital, New Delhi
Source of Support: None, Conflict of Interest: None
Background: Coronavirus disease 2019 (COVID-19) and the nationwide lockdown have resulted in profound disruptions in health care. Thus, the study was done to assess the barriers faced by caregivers of children with chronic diseases in accessing healthcare services due to the lockdown. Methods: A questionnaire-based telephonic survey was performed after 2 months of nationwide lockdown in children with chronic diseases at a tertiary hospital in India. Barriers faced were recorded and compared with the place of residence and socioeconomic status (SES). Results: A total of 101 children with mean ± standard deviation age of 9.7 ± 3.6 years and median (interquartile range) disease duration of 48 (12, 84) months were included. The majority (84.6%) was on daily therapy and 65.3% reported disrupted treatment. Patients residing away from the capital had greater difficulty in investigations and in transport to the hospital (P < 0.05) compared to those in the capital. Patients from lower SES had more difficulty in procuring medications (64.1% and 35.4%; P = 0.006), transport (62.3% and 29.1%; P = 0.003), and perceived significant effect of COVID-19 on their child (47.2% and 16.7%; P = 0.002) compared to middle SES. Conclusions: Disrupted health-care access during COVID-19 suggests the need for health-care systems to be better equipped to manage patients with chronic illnesses during such pandemics.
Keywords: Cancer, chronic kidney failure, diabetes, socioeconomic status, treatment
|How to cite this article:|
Mathur A, Meena P, Sekhar JC, Sahi PK, Dabas A, Mantan M, Yadav S. Barriers to health-care access amid the coronavirus disease 2019 pandemic in children with non-coronavirus disease illnesses from India. J Appl Sci Clin Pract 2022;3:87-91
|How to cite this URL:|
Mathur A, Meena P, Sekhar JC, Sahi PK, Dabas A, Mantan M, Yadav S. Barriers to health-care access amid the coronavirus disease 2019 pandemic in children with non-coronavirus disease illnesses from India. J Appl Sci Clin Pract [serial online] 2022 [cited 2022 Dec 6];3:87-91. Available from: http://www.jascp.org/text.asp?2022/3/3/87/360443
| Introduction|| |
Coronavirus disease 2019 (COVID-19) that initially emerged in December 2019 in Wuhan City, China, was declared a pandemic by the World Health Organization on March 11, 2020. It has spared no region of the world with 17,918,582 confirmed cases and 686,703 deaths worldwide as on August 3, 2020. After reporting its first COVID-19 case on January 30, 2020, India reported 1,855,745 confirmed cases and 38,938 deaths as on August 4, 2020., In a bid to control the spread and avoid overwhelming an already inundated health-care system, several public health interventions were adopted by the Government of India. These included restrictions on large gatherings, office, and school attendance, travel, and the nationwide lockdown from March 25, 2020. However, the institution of these stringent measures brought a slew of problems of its own – halted economy, stranded migrant laborers, and social problems.
An additional problem, seemingly gone unnoticed, was the limited access to health-care services by the general public in view of travel restrictions and conservative functioning of the health facilities. The daily practice in the medical field had seen substantial alterations with considerable changes in the delivery of nonemergent and elective services. Despite the Government allowing the movement of people to access essential health-care services, data show decline in the number of people seeking health-care services – child immunization services, outpatient and inpatient services, maternal healthcare services, etc. People's reluctance to attend health facilities due to anxiety and fear of cross-infection and loss of daily earnings made it difficult for those from lower socioeconomic status (SES) to procure medications, further compromising their health-seeking attitude.
The indirect impact of this pandemic may therefore be also perceived on nonrelated illnesses. A modeling study similarly estimated that even a small disruption in routine health care for children could result in lakhs of additional underfive child deaths in low- and middle-income countries. Interruption in basic health-care access during the recent 2014–2015 Ebola epidemic was associated with an increased number of deaths due to measles, malaria, HIV/acquired immunodeficiency syndrome, and tuberculosis that surpassed deaths caused by Ebola virus. Vaccination campaigns for polio, measles, cholera, human papillomavirus, yellow fever, and meningitis have been deferred due to COVID-19. UNICEF estimates that 117 million children across 37 countries are at risk of missing out on the life-saving measles vaccine.
Few studies have assessed the impact of the COVID-19 pandemic and lockdown on delivering health-care services to patients.,,Hence, we sought to assess the impact of COVID-19 on access to health-care facilities in children with diagnosed noncommunicable diseases who were on follow-up in a tertiary care hospital in North India.
| Materials and Methods|| |
A survey of the perspectives of caregivers of pediatric patients with chronic diseases regarding barriers to health-care services amid the COVID-19 pandemic was conducted after 2 months of nationwide lockdown over a period of 1 month (June 2020). Institutional ethics approval was taken before the commencement of the study. All pediatric (1–18 years) patients who were being treated for any chronic noncommunicable disease such as malignancy, endocrine disorders, or chronic kidney disease (CKD) at a tertiary care hospital at New Delhi, India, and who could be contacted telephonically by the research team were included. The hospital was a public hospital which provided free services and medications to patients chiefly residing at New Delhi, neighboring area called as National Capital Region (NCR), and the surrounding cities. At the onset of lockdown, this hospital was converted to COVID-only facility by the state Government.
Informed implied consent was taken telephonically from the caregivers before the survey was conducted. A sample size of 100 patients was chosen for convenience. A predesigned brief questionnaire with closed-ended questions was used for capturing data. The questionnaire was pretested and validated in Hindi language on ten subjects by two separate investigators.
The questionnaire was administered telephonically by one of the study team members, and the details were recorded in an anonymized manner. The average time for administration of the questionnaire was 15 min. The responses for barriers faced by the caregivers of patients in seeking health-care services leading to disrupted treatment, any alternative strategies adopted, and effect of COVID-19 on their child's health were recorded. Patients with delay or completely missing any urgent or scheduled medication/treatment/investigation/procedure due to any reason related to COVID-19 pandemic were labeled to have “disrupted treatment.”. The SES of the family was defined as per the Modified Kuppuswamy scale updated in 2019.
The proportion of patients with disrupted treatment during the COVID-19 pandemic was calculated. The average duration of delay in health-care access amid the COVID-19 pandemic was estimated. The association of the above parameters with SES, place of residence, and the underlying diagnosis was also analyzed.
Data were compiled using MS Excel and analyzed using MS Excel and IBM SPSS Statistics for Windows, Version 25.0. (IBM Corp, Armonk, NY). The responses were expressed by percentages, continuous data as mean/standard deviation or median with interquartile range. The significance level of differences between the proportions was tested by Chi square test or Fisher's exact test. A P < 0.05 was considered statistically significant.
| Results|| |
The study included 101 patients already diagnosed with chronic disease. Information was gathered telephonically from the parents in all except one, where the patient himself provided the information. The baseline characteristics of the study population are given in [Table 1].
There was no source of information about existent hospital services for 49.5% of patients, whereas others used television (26.7%), radio (14.8%), newspapers (3%), and social media (5%) to keep themselves updated. Patients had their scheduled follow-up at the hospital after a mean ± standard deviation duration of 4.97 ± 4 weeks (range: 0–12 weeks) postinitiation of lockdown. Sixty-six patients (65.3%) had a “disrupted treatment” in some manner. There was a delay in accessing scheduled treatment in 25 (24.8%) patients (median interquartile range [IQR] delay: 13 (7, 30) days) and a delay in scheduled investigations in 48 (47.5%) patients (median [IQR] delay: 68 (35, 70) days). Only one patient with diabetes (1%) had a delay in getting urgent treatment, and none had any delay in getting scheduled procedures like bone marrow examination. The barriers faced by patients in accessing health-care services are shown in [Table 2]. Around 7.14% of patients belonging to the neighboring NCR area had difficulty in urgent treatment, unlike none of the patients from New Delhi (P = 0.043). Similarly, 54.7% residents of Delhi, 78.5% from NCR, and 26.1% from other cities reported difficulty in getting scheduled investigations done (P = 0.025), with difficulty in transport in 39%, 71.4%, and 52.2%, respectively (P = 0.074).
A greater proportion of patients from lower than middle SES had difficulty in procuring medications (64.1% vs. 35.4%; P = 0.006) and transport (62.3% vs. 29.1%; P = 0.003). Patients who were chiefly on outpatient follow-up like those with diabetes and CKD had difficulty in contacting the primary physician (85% and 60.5%, respectively), unlike none among cancer patients, all of whom were admitted or availing day-care facilities at the hospital (P < 0.001). Similarly, a greater proportion of those with diabetes and CKD had delay in scheduled investigations (62.5% and 45%, respectively), unlike only 20% of those with cancer (P = 0.016).
[Figure 1] depicts the various ways by which patients with different chronic diseases managed their ongoing treatment. Treatment protocols of four patients were modified after consulting the primary doctor telephonically, and 12.9% of patients were transferred to another hospital for continuing treatment. Three (3%), ten (9.9%), and two (2%) patients consulted Ayurveda, Yoga and Naturopathy, Unani, Siddha, and Homeopathy, another private doctor, and chemist/auxiliary nurse midwife, respectively.
|Figure 1: Methods used by patients with different chronic illnesses to continue treatment|
Click here to view
None of the patients had any family member who had tested positive for COVID-19. A significantly higher proportion of patients from lower SES (47.2%) felt that treatment was affected by COVID-19 unlike those from middle SES (16.7%); P = 0.002. Parents of 58.4% patients perceived that their children were at a higher risk of contracting the infection and 60.4% were concerned about the increased risk of severe illness in them (85% with diabetes, 73.3% with cancer, and 32.6% with CKD; P < 0.001).
| Discussion|| |
The present study highlights the barriers faced by pediatric patients with non-COVID illness during the pandemic. Place of residence and SES significantly influenced few outcomes, with delay in investigation and treatment seen in a significant proportion.
Disease epidemics in the past have created serious interruptions in access to primary health care, leading to increased morbidity and mortality. Late and severe presentations to hospitals for non-COVID conditions, supposedly due to reduced access to health care or fear of acquiring COVID-19 at health-care facilities have been reported. During Italy's national lockdown, hospital statistics showed substantial decreases (73%–80%) in pediatric emergency department visits compared with the same time period in 2019 and 2018. Similarly, a drop in child health visits from 11.8 to 4.5 visits/day/clinic (mean change of ‒7.2 visits, 95% confidence interval ‒9.2, ‒5.3) was recorded. Another study by researchers at Harvard University and Phreesia, found that the number of visits to ambulatory practices declined nearly 60% by early April 2020 with the relative decline being the largest among surgical specialties and pediatrics. Our study showed a similar trend with delay in accessing scheduled treatment and investigations in a significant proportion.
People in low- and middle-income countries have limited access to hospitals and specialized care. A study in such a country found that about 30% of people could not access emergency hospital care within 2 h of travel time. Involvement of health-care facilities in combating the pandemic, compounded by travel restrictions due to the lockdown, would worsen the situation. Our study found that almost half of the patients had difficulty in accessing transport. Those residing in Delhi and NCR had more difficulty in getting their scheduled investigations done, possibly because the hospitals were overwhelmed with COVID-19 cases.
COVID-19 is occurring against a background of social and economic disparities in existing noncommunicable diseases, as well as inequalities in the social determinants of health, making it a syndemic pandemic that interacts with and aggravates these already existing circumstances. While “vertical distancing” is the major reason for inequalities in India, the “horizontal distancing” put in place after COVID-19 has further augmented these inequalities. Moreover, the loss of daily wage earnings in people belonging to low SES has made it cumbersome for them to afford medications, which can raise immediate threat to life or result in increased long-term disability due to worsening of the disease state. As anticipated, patients from the lower SES in our study faced significant hurdles in procuring essential drugs and in transport compared to those from the middle class. Parents from the lower SES were also more worried that the treatment of their children was significantly affected by COVID-19.
COVID-19 has taken an untold toll on those with chronic noncommunicable diseases. Lack of medications and access to medical care was associated with higher odds of posttraumatic stress, psychological distress, and poor or fair self-reported health 4 years postdisaster. A case study from Ghana among cancer patients showed inevitableq delays in scheduling diagnostic procedures, chemotherapy, radiotherapy, and surgeries likely to result in less than favorable outcomes in the future, similar to our study findings. However, continuity of treatment was ensured in all patients in the study without anyone to discontinue ongoing chemotherapy. Previous studies have found a significant deterioration in glycemic control of diabetic patients after mass disasters due to lack of dietary and medical adherence, nonavailability of medications, extreme stress, and antecedent medical or surgical problems. Children with diabetes in the present study also reported difficulty in procuring insulin vials due to financial reasons and deferred treatment. The effect of the same on the glycemic control was however, not evaluated in the present study. Similarly, children suffering from CKD are vulnerable to mass disasters, and epidemics as their treatment largely depends on technology, functioning infrastructure, and adequate healthcare personnel. Hemodialysis services are also limited during disasters.,, A significant proportion of CKD patients complained of similar delays in treatment and investigations in the present study. Thus, even when hospital visits by chronic patients were discouraged during the pandemic with facility for teleconsultation, there was a need for dissemination of information for procedures and treatment that cannot be delayed like malignancy, urgent surgeries, insulin therapy, etc.
A major limitation of the study was the absence of objective evaluation of the health-care barriers on disease control, with relatively small samples for specific diagnosis groups. However, this is one of the first studies to evaluate the impact of COVID-19 and the imposed lockdown on experiences of patients of pediatric non-COVID illnesses.
| Conclusions|| |
The COVID-19 pandemic and the imposed lockdown had significant effects in health-care access and continuing treatment in children with chronic diseases. The study highlights patients' experiences where health-care facilities need to be better prepared in future pandemics to plan for continuity of treatment in these groups by arranging separate non infected facilities in nearby hospitals with emphasis on telemedicine for providing consultations. The medical practice would need dynamic, operational, and creative strategic plans to alleviate the disarray in medical care and to explore pathways for effective reintegration of clinical and surgical practice in future.
We would like to thank Gurukool, Maulana Azad Medical College for conceptualization and training of students in research.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]