Shared care for children with cancer in India through social and healthcare partnerships during the COVID‐19 pandemic

Abstract Background The COVID pandemic posed a challenge for the tertiary centers to continue treatment. Some tertiary centers were designated as COVID‐only hospitals, making it difficult for existing childhood cancer patients to continue their treatment at those centres. The need for shared care in childhood cancer was perceived by Cankids and its partnering childhood cancer‐treating centers in North and East India. Aim We aim to show how Cankids upscaled its shared care model to ensure that COVID designated hospitals connected with other hospitals who have to continue to provide care to childhood cancer patients in the pandemic and thus ensured the continuation of treatment for these patients. Methods and result The need assessment of the beneficiaries was done in discussion with the hospital of origin and destination hospital. The need for shared care was also discussed with the families and consent was taken before shifting their children. Cankids with the help of advisors identified cases of high risk that need immediate attention, proactive regular monitoring, and help in care planning with the perspective and recommendation of the multiple providers. The shared care unit came forward with reasonable and discounted packages for treatment. There was a total of five hospitals requiring shared care, and 55 children were supported from April to November 2020. The median age was 8 years and their hospital of origin are in Bihar, Uttar Pradesh, West Bengal, and Delhi. The expenditure on the treatment of the 55 patients was INR 61 61 636 ($ 84 843), with a median of INR 41765 (IQR 19491–174 129) on each patient. Total 291 trips for the transport were arranged and all the patients combined stayed 174 days at Cankids accommodation facility. Conclusion The shared care helped the patients access standard treatment and reduce the financial burden.


| INTRODUCTION
The world is currently experiencing the COVID-19 pandemic. 1 The first patient with SARS-CoV-2 infection from India was reported from Kerala at the end of January 2020. 2 Following the WHO declaration of the global pandemic on the 11th of March 2020, on the 24th of March 2020, the Government of India announced a national lockdown. 3 Many tertiary centers that were providing specialized treatment for various illnesses designated as dedicated COVID hospitals. 4 Consequently, children with cancer suddenly found themselves without their treatment facility. There was no also governmental or institutional directive on an alternative for these patients.
Cankids (www.cankidsindia.org) is a civil society organization working since the year 2004 for change for childhood cancer in India and today supports more than 11 000 patients every year by enabling access to standard care, ensuring holistic care, quality of life, and improving survival of these patients. 5 As of 2020, Cankids has a presence in 113 hospitals which includes 61 hospitals across North and East India. And so Cankids was well placed to reduce the interruption in treatment of these children during the pandemic and the lockdown. The extraordinary situation created by COVID-19 created an increased need for shared care by finding an alternative facility so that these children with cancer could continue treatment uninterrupted.
Facilitating shared care between two or more tertiary centers as a pediatric oncology outreach clinic has been a small and more recent part of the Cankids portfolio even before the COVID-19 pandemic. 6

| Setting
Hospital of Origin -Hospitals in India that stopped providing service to childhood cancer patients as a result of the COVID 19 pandemic as they were designated COVID 19 hospitals.
Destination hospital -Hospitals usually in the same geographic area who were already providing care to children with cancer and were able to accommodate additional patients and ensure uninterrupted treatment for the period of the pandemic.
Facilitation By -Cankids, a community-based organization working across India.

| Time-period
For varying periods starting from April 2020 till January 2021.

| Inclusion criteria
Patients up to 19 years of age with a confirmed diagnosis of cancer, who were undergoing treatment at the hospitals of origin which were closed for service due to COVID 19 pandemic, and who needed to continue active treatment needing inpatient or daycare admissions.

| Exclusion criteria
Those who needed only follow-up and had completed their treatment for example, survivors.

| Enabling transfer
The parents/ guardians of the patients were informed by the treating team of the hospitals of origin as well as by the social support team of Cankids. The information about the need for shifting was communicated with them. Their approval was taken before they were shifted to destination hospitals. At the destination hospitals, they consented to treatment. There was regular communication between the treating team at the hospital of origin and the destination hospital on the relevant medical issues about each patient.
As the lockdown led to travel restrictions, particularly for interstate travel, special permissions from the district/ state administration were obtained by the management team of the Cankids. Standard COVID-19 precautions as per the government of India were followed during transporting patients and their families. Decontamination of the ambulance was performed every time a patient was transported in the ambulance. All horizontal, vertical, and contact surfaces were disinfected with a cotton cloth saturated with a 1% sodium hypochlorite solution. Change of cotton mop and water containing disinfectant was ensured after each cleaning cycle. The biomedical waste generated (including PPE) was disposed off in a bio-hazard bag (yellow bag).

| Other support
Arrangements for lodging were also made for the patient and two caregivers when needed. During the whole period of staying, local transport was also arranged from lodgement facility to hospital and vice versa. Cankids has seven dedicated homes away from home (HAH) facilities across India, out of which two are in Delhi.
These facilities are equipped with cooking facility, and have opportunities for learning, entertainment, celebrations, and therapeutic activities.
The nutritionist, teachers, and psychologists were involved in the holistic care and extended their specialized services to the patients and family members during the stay in hospital care.
The nutritionists assessed the dietary need and made a diet plan with the consensus of treating doctors. The teachers actively engaged the patients and made available the customized learning materials, while psychologists assessed the psychosocial need of the patients and family members and counseled them accordingly.

| Data management and analysis
The socio-demographic and required clinical information on these patients was gathered from the hospital records. The data about transport, support staff involved, gap financing for quality drugs, diagnostics, and standard treatment, and so on were collected from the management information system-vCAN (virtual Cankids Assistance Network) of the Cankids. Cankids has its own cloudbased integrated customer relationship management platform, developed by Salesforce for data entry, single shared view, and analysis.
The outcome of the interest was avoiding death, abandonment, and relapse due to treatment delay. The data were analyzed by the Cankids management team.    They create a support group named "Sambhav" and communicated through telephone, helplines, and emails with the patients. They took help from the non-government organization for antibiotic administration, accommodation, coordination with the local hospital, transferring medicines to distant patients, and transportation facility within and across states. 10

| CONCLUSION
Access to services constitutes a major barrier to cancer diagnosis and treatment for the majority of children in LMIC. The shared care experience during COVID-19 time provides an opportunity for close coordination between treating hospitals, patients, and parents. The patients in need received all the benefits of specialist intervention combined with the continuity of care. Learnings from this experience need to continue and be implemented even after the pandemic is over. This will help to reduce underdiagnosis, abandonment, and low survival, also relieve some of the financial and logistical constraints to continuing treatment.

ACKNOWLEDGMENT
We thank social support team members of the Cankids. They coordinated in shared care by establishing rapport with families of the patients and hospital.

CONFLICT OF INTEREST
The authors declare that they have no conflict of interest.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.

ETHICS STATEMENT
No ethics approval was taken as this was not part of a research study or intervention but the transition of necessary services to ensure the quality of treatment did not decline. No human subject data are involved; therefore, no patient consent was required.