1. INTRODUCTION
The coronavirus SARS-CoV-2 causes the disease COVID-19, that has become
a pandemic and global crisis. It was initially identified in Wuhan,
China in December 2019, and has spread worldwide since (1). While this
infection has proved to be a threat to adults, especially the elderly
and people who are already immunocompromised, children seem to be at a
low risk for serious COVID-19 infections (2, 3, and 4). This includes
children who are being treated for cancer, despite being
immunocompromised (5). However, even though children are minimally
affected by the Corona Virus Disease, those patients that do succumb to
the virus suffer from severe complications (6,7) and are also severely
impacted by the psychosocial consequences of this pandemic (8,9,10).
The approach to combat the virus in most countries all over the world
has been more or less similar. Hospitals have resorted to directing most
services to patients with COVID-19, reducing or even halting most
elective care. Drastic measures such as limiting the number of hospital
guests, no entry of individuals into the hospital with symptoms
suggestive of COVID-19 infection until a viral test is negative,
postponing all follow-up outpatient visits and appointments, avoiding
physical contact with patients, isolating children in their hospital
rooms and mandatory personal protective gear are some of the measures
implemented by hospitals during the pandemic (1).
Cancer children on chemotherapy require regular outpatient assistance,
intermittent hospital admission and support therapy for appropriate
therapy delivery. The impact of the COVID-19 pandemic and hospital
precautionary measures on these group of patients would therefore have
critical consequences because they risk receiving sub- optimal care.
MATERIALS AND METHODSWe performed a cross sectional observational study for children
diagnosed with cancer at the Prince Sultan Military Medical City in
Riyadh. The aim of our survey was to assess the impact of the COVID-19
pandemic on children with cancer with regards to the medical service
provided, precautionary measures implemented by the hospital cancer
unit to prevent the spread of infection, the acceptance of virtual
platforms utilized during the pandemic and the psychological and
mental impact of the pandemic in children already diagnosed with a
fatal disease. The study was approved by the ethics committee with IRB
number: 1374 (HP-01-R079).
To achieve our objective, we designed a voluntary anonymous and
targeted questionnaire after extensive literature review of the recent
COVID-19 publications concerning cancer patients.
Our inclusion criteria was all children between the ages of 0-14 years
diagnosed with or recently diagnosed with cancer. Participating
parents were asked to complete the booklet type survey questionnaire
at the clinic visit during the pandemic or via a virtual platform.
Data was collected on and Excel spreadsheet for analysis.
STATISTICAL ANALYSISWe used descriptive statistics to analyze patient demographic data. We
qualitatively analyzed the responses using pie chart and graphic data
generated by the software programme.
RESULTS
RESULTS OVERVIEW
We collected 204 responses from cancer patients, 64% of the data was
collected personally in the clinic and 36% was collected via phone
calls and telemedicine (Figure 1).The majority of patients were
diagnosed with cancer prior to the pandemic (93%) and 7% were
diagnosed with cancer during the pandemic.
CANCER TYPE AND THERAPY RELATED RESULTS:
Of the 204 cancer patients, 60.4% patients were receiving ongoing
chemotherapy for leukemia /lymphoma and 39.6% for solid tumors. There
were 68.7% of patients receiving ongoing chemotherapy and the remainder
of the patients were in remission or on regular follow up.
Of the 204 responses, 63% of patients reported a delay in treatment
received during the COVID-19 pandemic and 37% of patients reported no
delay in treatment (Figure 2)
Patients on chemotherapy experienced treatment delay for various reasons
listed in Table 1.The majority of patients (53.3%) reported hospital
cancellation as the main reason for treatment or procedure delay during
the COVID-19 lockdown and city curfew. There were a total of 30.8% of
patients who reported non -availability of adequate PPE, lack of cancer
support and shortage of medications as a major challenge faced during
the pandemic.
TELEMEDICINE VERSUS HOSPITAL VISIT RESULTS
Of the 204 responses, 65% reported a preference for telemedicine and
virtual clinic visits of which 80% reported a fear of contracting the
virus as the main reason for this preference. The remaining patients
preferred telemedicine visits for heterogeneous reasons such as living
outside the city or transport difficulties faced during hospital visits.
The minority of patients (35%) reported a preference for hospital
visits due to the perception of more accurate assessments received
during personal interaction with the physician (Figure 3).
In addition, 57.3% of patients strongly agreed to continue attending
virtual clinics after the pandemic while 31% strongly disagreed to
continue the virtual clinics. A minority of patients (11.7%) preferred
personal group settings to a mild degree.
HOSPITAL PRECAUTIONS, SAFETY AND EDUCATION RESULTS
Fewer patients (40%) felt safe to visit the hospital during the
pandemic compared to 55.3% of patients who did not feel safe to visit
the hospital during the outbreak primarily for fear of contracting the
virus in a high risk setting such as hospitals.
All patients adhered to the safety precautions as advised when visiting
the hospital and most patients (97%) were satisfied with the hospital
precautions implemented to minimize the risk of infection (Figure 4).
Of the 204 responses, 44.2% of patients reported having received the
patient education materials provided by the hospital while 55.8% of
patients did not receive these materials suggesting improvement in
patient education provided by the hospital as a point of contention.
CHILDRENS MENTAL STATUS RESULTS
The majority of parents (70.2%) reported that the child had a
reasonable understanding of the virus and its potential adverse
outcomes. When asked about COVID-19 effects on cancer patients, 90.1%
reported a heightened awareness.
While the majority of patients (87.8%) of patients did not report an
incidence of a family member being affected by COVID-19, 94.8% of
patients were fearful of themselves or a family member contracting the
virus. The cancer patients appeared overall more concerned about the
complications which may result from contracting the virus than the
general public with 53.5% of positive responses.
CHILDRENS MENTAL HEALTH RELATED RESULTS
The majority of patients (81.3%) of patients experienced an adverse
effect on the quality of life during the pandemic predominantly due to
limitation in social activities, social isolation, feeling anxious,
afraid and alone.
There were 67.4% of parents that were concerned about new onset
behavioral occurrences in their children. Behavioral and mental
characteristics reported are documented in Table 2.
SURVEY OF PATIENT RECOMMENDATIONS
Patients gave a myriad of recommendations for improving hospital service
during the pandemic as listed in Table 3.
DISCUSSION AND RECOMMENDATIONS
We collected 204 responses during a survey which assessed the impact on
the treatment of cancer children at a tertiary institution during the
COVID-19 pandemic. The majority of patients were receiving ongoing
chemotherapy for leukemia/lymphoma. The majority of these patients
(60.5%) reported a delay in treatment received due to hospital
cancellation. The general consensus emerging from high risk countries
such as Italy and China following the COVID-19 pandemic was to postpone
emergency treatments or elective surgery for cancer patients (11, 12,
13, 14), however the impact of treatment delay on the risk for cancer
children is currently lacking.
Although, the majority of patients in our cohort complained of delayed
treatment, fortunately none of the delays led to fatalities.
Nevertheless, we recommend that a forced delay in treatment due to
precautionary measures in future should be considered on a case by case
basis for each patient to avoid critical patients not receiving adequate
therapy.
The survey also highlights the requirement of hospitals to improve the
pharmaceutical supply chain to avoid delay in patients receiving
critical cancer therapies within critical time. We recommend that
pharmacy departments administer home based therapies in sufficient
quantities for patients in order to minimize the requirement for
hospital visits.
Overall, patients did not feel safe to visit the hospital during the
pandemic due to fear of contracting the virus in a high- risk setting,
however when visiting the hospital they were satisfied with the hospital
precautionary measures implemented. The majority of patients reported a
preference for telemedicine, a precautionary measure adopted by most
hospitals worldwide. Of the 204 responses, 65.1% reported a preference
for telemedicine and virtual clinic visits of which 80% reported a fear
of contracting the virus as the main reason for this preference. The
majority of patients gave positive responses for a continuation of
telemedicine post pandemic.
In the context of global lockdowns and physical distancing to help
flatten the COVID-19 curve, telemedicine has proved fundamental to
keeping patients and their healthcare providers connected and safe. Many
practitioners all over the world report that online consultations are
proving to be an effective and sustainable patient-care solution. It
offers convenient care from the privacy and comfort of one’s own home.
It has proven invaluable in allowing patients to keep their physical
distance while continuing to receive medical care. It is especially
useful to ensure continued care for those with chronic conditions, such
as children with cancer, so as to help them overcome any misinformation
that may add to their anxiety. It provides healthcare services to people
who live in remote areas and also enables worldwide communication among
practitioners and patients. We recommend a systematic approach for the
physician to adhere to in order to improve the telemedicine consultation
for children with cancer as follows:
- Take a full history of the patient with regard to new symptoms or
complaints
- To triage those who are in need of hospital care from those who can be
managed via telemedicine.
- Obtain the history of presenting illness, side effects of chemotherapy
associated signs and symptoms.
- Establish medication review
- Observations: e.g. breathing, side effects of chemotherapy
- Take the vital signs that are able to be taken by thorough explanation
to care giver
The most concerning results of the survey was the impact of the pandemic
on the mental health status of children. Parents of children reported a
heterogeneous array of concerning behavioral changes of children during
the pandemic.
Studies indicate that the pandemic could have negative effects on both
children’s physical and mental health currently and in the long-term.
Being quarantined in homes and institutions may result in a greater
psychological burden then the physical sufferings caused by the virus
(15). School closure, lack of outdoor activity, new dietary regimens and
sleeping patterns are likely to disrupt children’s usual lifestyle and
can potentially result in boredom, impatience, agitation, frustration,
anxiety and neuropsychiatric manifestations (16).
Children diagnosed with cancer suffer unique problems. While processing
the diagnosis of cancer is hard enough, the implications of COVID-19
makes it harder to fully grasp the implications of this new disease on
their current ill health (17).
Global research indicates that healthcare for children with cancer
should include psychological services to prevent long-term emotional and
behavioral problems (18, 19, and 20). This must not be halted due to
COVID-19, but rather increased. These services must be delivered in an
age-appropriate, developmentally appropriate, and time-sensitive manner.
In order to mitigate the psychosocial ill-effects of COVID-19 on
children, proactive and targeted interventions can be proposed. Parents,
pediatricians, psychologists, social workers, hospital authorities,
government and non-governmental organizations have important roles to
play to make the mission successful. It is essential for healthcare
professionals to establish multidisciplinary mental health taskforce
teams comprised of psychiatrists, psychiatric nurses, clinical
psychologists and other mental healthcare works to provide psychological
support to children diagnosed with cancer. Hospitals need to be aware of
the social needs of children and make necessary arrangements to maintain
communication with their support networks. The use of technology such as
audiovisual devices may prove to be useful.