Introduction
The coronavirus disease 2019 (COVID-19) pandemic has disrupted the provision of health
services and created unprecedented challenges for children with cancer in getting
safe and effective cancer-directed therapy all over the world, even in developed countries.
With initial reports suggesting that people with comorbidities had poor outcomes,
we expected that children with cancer would develop severe disease and have adverse
outcomes.[1] This complexity was potentiated by major void in the access to and availability
of treatment facilities, and financial constraints due to lockdown.
Childhood cancer is highly curable when promptly diagnosed and appropriately treated.
Interruptions in treatment delivery or compromise of intensive therapies are expected
to result in treatment failure and increased rate of relapses. But it is also known
that viral infections are associated with increased morbidity and mortality in these
immunocompromised children. So, at the onset of pandemic, while the treating physicians
were outweighing the risk versus benefits of continuing cancer treatment in such an
unpredictable scenario, equally worrying were the concerns about dropouts due to travel
restrictions, loss of employment, and increased cost of cancer treatments. Hence,
we developed strategies anticipating these issues to continue our pediatric cancer
care services uninterrupted, and to restrict the diagnostic delays and treatment interruptions
to the minimal. We studied the effect of these strategies on newly diagnosed as well
as children with ongoing treatment during COVID-19 pandemic.
Materials and Methods
This is a cross-sectional study of the effect of COVID-19 pandemic on delivery of
pediatric cancer care services at our center. All children aged less than 18 years
with cancer who were admitted at our center between March 2020 and September 2021
were included in the study. Details of age, gender, primary diagnosis, disease status
at the time of admission, native place, distance traveled for treatment, travel expenses,
and place of accommodation during treatment were collected. Additional details about
COVID-19 positivity rate, dropouts, duration of treatment interrupted due to multiple
factors, and failure of initiation of treatment after diagnosis were collected. All
the children with cancer who were managed during the study period were included in
the study. The children who had treatment interruptions/lost to follow-up prior to
onset of COVID-19 were excluded from the study. The primary outcome was to measure
the effect of COVID-19 on delivery of cancer care services. The secondary outcome
was to assess whether the strategies followed at our center helped to reduce diagnostic
delays or loss to follow-up during the COVID-19 pandemic.
Statistical Analysis
All analyses were performed using Statistical Package for the Social Sciences software version 20.0. The missing data were addressed by complete case-wise analysis
or list-wise deletion.
Results
Out of total 1,490 admissions, 199 patients were managed during the study period from
March 2020 to September 2021. The demographic details of the children are provided
in [Table 1]. Among the 199 cases, 124 (62.3%) were newly diagnosed and 75 (37.7%) had ongoing
treatment. Thirty-five children (17.5%) underwent surgery and 23 (11.5%) received
radiotherapy during this period. Sixteen children relapsed (8%). Thirteen children
received palliative intent treatment with supportive care without cancer-directed
therapy during this period. Eleven children (5.5%) died either due to progressive
or refractory or relapsed disease condition during study period. Among 199 patients
managed, only 6 (3%) were lost to follow-up. Among the 124 newly diagnosed, only 4
(3.2%) of them did not initiate treatment. Among 1,471 tested, only 16 children (1%)
and 6 (0.4%) of the caregivers were found to be positive for infection. All of them
were asymptomatic and recovered uneventfully. Among the 16 COVID-19 positive cases,
3 were newly diagnosed acute lymphoblastic leukemias and they were initiated on induction
phase after 1 week. The remaining 13 children had a treatment interruption of 10 days.
Among the health care providers who were exclusively posted in pediatric oncology
unit, only two nursing staff and one doctor became COVID-19 positive and all of them
recovered uneventfully. Among 1,490 admissions, 97 were for febrile illness and all
of them were found to be negative for COVID-19 infection. Twenty-four families had
traveled more than 1,000 km and 37 families had traveled more than 500 km for the
sake of their child's treatment. A total of $4,464.96 was raised by individual contributions
toward treatment of these children. Among 199 children, 143 (71.8%) received support
for hospital expenses, 23 (11.5%) received travel support, 20 (10%) were provided
free accommodation, and 15 (7.5%) received home delivery of oral chemotherapy and
pain medications. The details of financial assistance are provided in [Table 2].
Table 1
Details of admissions during the study period
|
Variables
|
n = 199
|
%
|
|
Gender
|
|
|
|
Male
|
108
|
54.3
|
|
Female
|
91
|
45.7
|
|
Age group (years)
|
|
|
|
<1
|
30
|
15.1
|
|
1–5
|
69
|
34.6
|
|
5–12
|
63
|
31.7
|
|
>12
|
37
|
18.6
|
|
Distance traveled (km)
|
|
|
|
<25
|
61
|
30.6
|
|
<100
|
39
|
19.6
|
|
100–500
|
38
|
19.1
|
|
500–1,000
|
37
|
18.6
|
|
>1,000
|
24
|
12.1
|
|
Total admissions
|
1,490
|
|
|
Leukemia
|
770
|
52.0
|
|
Solid tumor
|
720
|
48.0
|
|
Newly diagnosed
|
124
|
|
|
Acute leukemia
|
39
|
31.5
|
|
Solid tumor
|
85
|
68.5
|
|
Ongoing treatment
|
75
|
|
|
Acute leukemia
|
48
|
69.6
|
|
Solid tumor
|
27
|
30.4
|
|
Relapsed
|
16
|
|
|
Acute leukemia
|
8
|
50.0
|
|
Solid tumor
|
8
|
50.0
|
|
Death
|
11
|
|
|
Acute leukemia
|
6
|
44.4
|
|
Solid tumor
|
5
|
55.6
|
|
Lost to follow-up
|
6
|
|
|
Acute leukemia
|
2
|
33.3
|
|
Solid tumor
|
4
|
66.7
|
Table 2
Details of financial support
|
Variables
|
Amount supported (US $)
|
|
COVID-19 testing, diagnostic tests, metastatic evaluation, chemotherapy, and supportive
care (blood products, antibiotics, antifungals, and antivirals)
|
86,989.05
|
|
Travel support
|
1,144.90
|
|
Waiving off hospital fees
|
17,010.94
|
Abbreviation: COVID-19, coronavirus disease 2019.
Discussion
The COVID-19 pandemic, the resultant nationwide lockdown, travel restrictions, and
financial constraints, all have led to disruption of cancer care services all over
the world. The very high infectivity rate and mortality rate during first wave and
uncertainty regarding duration of pandemic have further complicated the family's social
and psychological fears and added to their hesitancy in accessing appropriate care.
Thus, the indirect effects of COVID-19 pandemic strained the health care systems and
created barriers for the care continuum of the children with cancer.
But the consoling facts were that asymptomatic COVID-19 infection among pediatric
patients was as low as 2.5% and most children did not need admission for infection.[2]
Though it was presumed initially that children with cancer would be at an increased
risk of acquiring COVID-19 infection and develop severe form of the disease like any
other viral infections in immunocompromised conditions, but within few months of onset,
worldwide data have confirmed that children are less affected and COVID-19 infections
in children with cancer are usually mild or asymptomatic and they recover without
much interventions.[3]
At the same time, key stakeholders in treatment of pediatric cancer released consensus
statements recommending continuation of standard care in the diagnosis, treatment,
and supportive care whenever possible and discouraging elective modifications in cancer-directed
treatments.[4]
Ours is a tertiary care center catering to around 100 to 125 new patients per year
and we provide chemotherapy to families coming from various economic strata.
During this COVID-19 pandemic, although routine elective inpatient and outpatient
services were closed at our center, oncology, perinatal, radiation oncology, emergency,
intensive care, and dialysis services were continued. So, when we had decided to continue
pediatric cancer care services, the next herculean task was to support families, anticipating
their difficulties in accommodation, travel, and financial resourcefulness during
the treatment, and also to reduce the risk of COVID-19 infections both for patients
and the health care team. Hence, we formulated a multilevel supportive care approach
to help the families manage the financial toxicity and help them in all possible ways
so that they could continue their child's treatment with minimal risk to families
as well as the health care community.
• Tiara Haemophilia and Cancer Foundation: The primary nongovernmental organization (NGO) that supports the cancer treatment
of poor children at our center agreed to sponsor for the COVID-19 testing and supportive
care in addition to supporting the diagnostic tests, metastatic evaluation, and chemotherapy
drugs. They have supported a total amount of $67,808.66.
• Golden Butterflies Children's Palliative Care Foundation: An NGO that provides palliative care, counseling, medical aid, and financial assistance
to families with children suffering from chronic and incurable diseases, supported
the transportation expenses for those families who had to travel from other states/districts
for their child's treatment and arranged for home delivery of pain medications.
• St Jude India Child Care Centre: An NGO that provides safe and hygienic housing facilities and free transport to
and from treatment centers, provided free accommodation in their “Home away from home”
center for 18 families and arranged for free transportation from the centers to the
treating hospitals.
• CanKids: A national NGO that provides holistic support to child with cancer and family from
the point of diagnosis, through treatment, and after, arranged for home delivery of
oral chemotherapy drugs and provided free accommodation for three families.
Thus, all aspects of probable dropouts—medical, accommodation, and travel expenses—were
taken care of, to limit treatment abandonment. In view of additional expenditure to
support these children, additional funds to the tune of $4,464.96 were generated by
means of contributions from staff and students from the institution and good-hearted
people all over the world.
Though COVID-19 infection in children with cancer has been mostly mild or asymptomatic,
the collateral effects have dramatically disrupted the diagnosis, treatment, and follow-up
of these patients, which may in turn affect their overall survival and outcomes. Italy
has reported a 50% decrease in new pediatric cancer cases when compared with previous
years.[5]
With hospitals catering only to COVID-19 patients, combined with lockdowns, restricted
transportation, and families' reluctance to seek care, diagnostic delays and fragmented
care in children with cancer have been reported in high-, middle-, and low-income
countries.[6]
Graetz et al in his cross-sectional survey across 79 countries have reported that
7% of centers had a complete closure for a median period of 10 days, 2% had stopped
evaluating new cases, 34% centers had treatment abandonment, and 28% had interruptions
in radiotherapy.[7] Pediatric Oncology East and Mediterranean group has reported that 24% of centers
restricted admissions of new cases, and delays in treatment—chemotherapy, surgery,
as well as radiotherapy—were reported in 29 to 44% of centers.[8]
In contrast, Germany has reported a higher incidence of new cases across all diagnostic
groups and that diagnostic processes, timeliness of diagnosis, and delivery of treatment
were hardly affected during the pandemic.[9] Mukkada et al in the cohort study from 131 institutions across 45 countries have
reported that 55.8% had an interruption in the cancer-directed therapy.[10] A report from Saudi Arabia has quoted 60.5% delay in the treatment received for
children with cancer.[11]
To reduce the risk of infection, we strategized effective and sustainable preventive
measures to prevent infections among health care workers. All children and attenders
were screened for COVID-19 infection prior to admissions. Dedicated group of doctors
and nursing staff were posted in oncology units and they were exempted from regular
COVID-19 ward duties. The working group was divided into two groups that worked on
alternate basis to minimize the risk of exposure. To prevent unnecessary exposure
to asymptomatic carriers, attenders accompanying patients were restricted and only
one attender was allowed to stay with the child throughout the admission period. The
numbers attending out patient were streamlined and given slots to avoid overcrowding.
Number of admissions per day was restricted to maintain social distancing in the wards.
Doctors and nurses were strictly adhering to compliance of personal protective equipment
and other World Health Organization recommended safety measures. Families were emphasized
to practice standard precautions for basic and respiratory hygiene and avoid sick
contacts. Children presenting with fever or COVID-19-like symptoms had separate pathways
for management until they were proven to be COVID-19 negative. Survivor clinics were
canceled and online consultations were arranged for children who had completed therapy
and for those who had minor complaints while on active treatment. A total of 401 online
consults were made. Only two of our nursing staff and one doctor acquired COVID-19
infection and all of them recovered with a mild illness.
For those children who needed less intensive chemotherapy, we developed a strategy
of shared care, in coordination with the oncologists or pediatricians nearby their
residence. A total of 37 admissions were arranged near their native places. Permission
letters to families were issued to facilitate the travel between states.
No diagnostic delays or interruptions in radiotherapy were noted for the children
managed during this period. There were no shortage of blood products or chemotherapy
drugs and routine supportive care was not compromised for any child.
Families with newly diagnosed children and who were coming from long distances faced
difficulties in getting accommodation nearby the treating center. So, we sought the
help of NGOs who provided them free accommodation facilities and transport services.
Around 24 families had traveled more than 1,000 km and 37 families had traveled more
than 500 km during the lockdown period for the sake of their child's treatment. Due
to the complete lockdown and nonavailability of trains and buses, families had to
spend an exorbitant amount for transport, but the NGOs offered to support the travel
expenses.
The major socioeconomic impact of the pandemic was reduction/loss of income, thereby
making cancer treatment unaffordable for most of the families. With the inputs from
NGOs and individual sponsors, a total of $86,989.05 was supported for chemotherapy,
diagnostic/metastatic investigations, and supportive care during febrile neutropenic
periods and COVID-19 testing. An amount of $1,144.90 was supported for travel expenses
and $17,010.94 was supported by the hospital administration by waiving off the bed
charges.
Mahajan et al have reported that shared care through an NGO CanKids, which sponsored
for diagnostic, chemotherapy, radiotherapy, surgery, and supportive care, has helped
55 children with cancer from 5 different hospitals to continue their care uninterrupted
from April to November 2020.[12] Seth et al have reported that strict preventive measures followed inside hospital,
usage of teleconsults, treatment modifications according to the risk status of the
patients, proper utilization of human resources, and involvement of NGOs for transport,
accommodation, and delivery of drugs have helped them to deliver pediatric oncology
services during the pandemic.[13] In a study from a tertiary care center in North India, whose patients travel around
500 km, chemotherapy was administered at home or in the neighboring hospitals by the
pediatricians, thereby avoiding interruptions and long travels.[14] Balduzzi et al highlighted the importance of having clean and COVID-19 pathways
for children to prevent cross-infection in the hospital.[15]
As a result of this multilayered supportive care model, we were able to cater to the
needs of 124 newly diagnosed children and 75 children with ongoing treatment. The
extensive financial support in the form of providing free accommodation, and sponsoring
for travel expenses and chemotherapy, had helped us to maintain a lowest rate of dropouts
(3%) during the study period. There were no diagnostic delays for newly diagnosed
cases and no interruptions in radiotherapy were noted during the study period.
