Coronavirus disease 2019 (COVID-19), caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), spread rapidly over the whole world with over 5.26 million deaths confirmed.
Children have been spared severe disease, for the most part, but the risk is higher for children with medical conditions, though still lower than among adults.
A new preprint on the medRxiv* server explores the risk of poor outcomes among such children because of the pandemic.
Children with medical complexity (CMC) are those who have healthcare needs due to chronic conditions that need special care. As a result, their care imposes a significant burden on caregivers, requires significant dependence on technology, and often requires visits or admissions to healthcare providers at various levels, from the local community through schools to hospitals.
These children are potentially at higher risk for adverse events because of the interruption to their care by their families; loss or disruption of support for home care; reduced opportunities to access educational resources; and the loss of other key supports for the children and their families. Caregivers within the child’s family typically carry out advanced medical and therapeutic tasks to help with the child’s care.
Some benefits also accrued in this group because of increased virtual care, and the lower incidence of respiratory illness. Nonetheless, pre-pandemic levels of medical and specialist care were lacking, including also therapy and rehabilitation, home care and respite services.
The reasons for this are multiple. For one, school closures affected the availability of developmental services, respite care out of the home, and the need for parents and children to provide more care. As jobs were lost, unemployment increased, and supply chain disruptions affected the availability of the required equipment and medications, additional difficulties were encountered.
The current study aims to assess the changes due to the pandemic and how they ensued in adverse outcomes to CMC. The areas of focus were:
- The effect on the access to medical services for CMC and how the family experienced this situation
- The changes in community services previously available to the CMC including medication and medical equipment access, home care and respite services
- Changes in education including their ability to experience learning in-person or virtually, and inability to access nursing care and therapies in school
What did the study show?
Over 500 pediatricians provided responses to the researchers concerning their care for CMC during the pandemic period. The results showed that indeed CMC experienced adverse outcomes due to the pandemic situation, as reported by almost a tenth of the pediatricians for CMC under their care. The median number of adverse events per pediatrician was three, but no deaths were reported.
The main problems were delays in healthcare consultations or care due to the wish to reduce exposure to the virus at hospitals, the reduced pace of developmental improvement, lower levels of health monitoring, delayed elective procedures due to poor access, and difficulties due to changes in hospital visitation policies.
Over a tenth reported difficulty in timely medication/equipment supply or vaccination, either due to shortages in supply or delayed dispensing. Most of these did not cause serious issues as other medications could be substituted, or the delay did not affect patient care. Significant adverse events were reported by seven pediatricians, and in five cases, the need for hospitalization was reported.
This includes skin ulcerations or pain due to ill-fitting equipment, while sometimes the delay in obtaining the equipment was due to the loss of financial stability for the family, lack of access to school-based therapeutic equipment, and virtual dispensing at clinics rather than in-person.
In fact, almost half the respondents said that the family found it difficult to provide uninterrupted care to the CMC during this period, and homecare disruptions were reported in over 40%.
In contrast, almost half the physicians reported that the shift to virtual platforms was very beneficial, along with the changes in the healthcare system. However, the virtual consultation could not replace the in-person visits completely, as for instance, in the absence of clinical examinations.
The reported reduction in the incidence of respiratory illness in the whole group could be due to the increased use of precautions during healthcare visits and other potential periods of exposure, such as the use of masks at schools and limited numbers of patients in hospital waiting rooms. The fact that siblings also had a very low incidence of respiratory illness, a worldwide phenomenon following the introduction of social distancing and the closure of many public spaces, also helped. The absence of such infections was very advantageous in helping CMC progress developmentally.
While all physicians were not aware of school attendance details in 2020, a quarter of the ~376 who did provide details said that 80% of CMCs were in school in person in their practices, but more than one in three said that less than a fifth did so. This 33% fraction who estimated a low in-person attendance at school was markedly up from the 5.5% of similar reports in the pre-pandemic period.
Almost one in seven said that CMC were not allowed to take part in learning in-person – mostly on public health advice, due to the lack of behavioral support in school, difficulties with transportation, or inability to maintain physical distancing or wear masks– while their healthy peers were permitted to do so, but the remaining were either unaware of such a problem or denied such an experience.
Over 66% said the CMC had healthcare services at school, but mostly this was not transferable to the home or the community once the schools shut down. Since this involved the loss of access to equipment at school, or therapeutic measures, CMC were unduly affected in this area.
Many families chose to teach their CMC at home over 2020, but this was hampered by the lack of a customized education plan for the child to handle virtual school.
The study showed that CMC experienced disruption in timely and effective health care, resulting in admissions to the hospital including the intensive care unit (ICU), developmental losses, and non-elective surgeries. This subset of children needs more in terms of medical care, community services, and psychological support. This was reflected in the pediatricians’ responses which showed how 40% of the families with CMC had interruptions to homecare and other community services that are essential to the care of the CMC as well as for the economic and emotional health of the families.
The pandemic also put family caregiving under stress, both emotional and financial. Both these disruptions are interwoven with each other and with already existing issues, causing a significant need for measures to relieve the stress experienced by CMC and their families.
There is evidence to show that the closure of the school system stressed the CMC during the pandemic, with loss of learning environments, therapeutic services and equipment, nursing care, respite care and social interactions. The increased load this places on family caregivers to substitute for the loss of care in all these areas could be the straw that breaks the camel’s back.
This makes it a matter of urgency to frame the new academic year in a more collaborative way that provides the necessary flexibility to shift between different modes of learning while accommodating CMC with the care they need.
The pandemic also brought to light some tools already available that could be harnessed to prevent additional sickness in CMC, such as the interventions that reduced the incidence of respiratory infections during the pandemic period. This is important for CMC who are more at risk of hospitalization with severe illness following such infections. Implementing an array of such measures after due evaluation, including handwashing, reduced class sizes, good ventilation, and the use of masks when necessary, as well as keeping children with respiratory symptoms out of the class, could improve health outcomes for CMC and enable them to access safe services.
Consideration of the broad impact on this sub-group of the paediatric population is required to inform pandemic and non-pandemic health policy and planning, including service design and delivery across acute, home and community care sectors, and education policy and service planning for children with CMC.”
medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.