“Earlier, we had to travel to Kathmandu every month for my son’s cancer follow-up care. This was costly and time-consuming, and my son was also forced to miss school for several days. There were also risks associated with long-distance travel. But all of that has changed now” says Bir Bahadur Chand with a smile on his face.
Bir Bahadur and several other families in Western Nepal are all participants of a unique ‘Shared Care model’ of childhood cancer treatment that is changing the lives of cancer patients and their families by making a significant portion of cancer care for children available closer to home, providing treatment and care while minimizing hardships on children and their families.
Every day more than 1 100 children globally are diagnosed with cancer. Childhood cancers have a higher chance of cure than cancers in adults, with more than 85% survival rate in developed countries. Sadly, in many low and low-middle-income countries including those in South-East Asia Region, the survival rate is less than 40%; largely due to delay in seeking care, lack of diagnostic services and trained health personnel, especially in primary care setting, weak-referral mechanisms, financial hardship, none or few centers for diagnosis and treatment, advanced stage of the disease at presentation, treatment refusal and abandonment, non-availability of medicines based on standard regimens, inadequate infection prevention, and suboptimal critical care facilities.
Making all or part of the treatment available nearer the child’s home has been shown to help overcome some of these factors and improve adherence to treatment, reduce financial and other burdens, and incrementally improve cancer care capacity. A few studies available in medical literature show a similar outcome between shared care and usual care among childhood cancer survivors.
Since 2014, combating noncommunicable diseases including cancer has been one of the regional flagship priorities for WHO South-East Asia Region. Since then, the Region has accelerated efforts to detect, diagnose, treat, and control cancer.
“We must accelerate progress against childhood cancer by addressing inequalities in diagnosis, treatment, and care and improve outcomes while ensuring no additional hardship on those recovering and their families. It is time that we combine our efforts to provide all children in need of cancer treatment and care our full support to enable them to lead long healthy and fulfilling lives,” said Dr Poonam Khetrapal Singh, Regional Director, WHO South-East Asia.
Recognizing the need for action to improve the survival of children with cancer globally, WHO, along with St. Jude Children’s Research Hospital and global partners launched the Global Initiative for Childhood Cancer (GICC) in 2018. As part of the global initiative, Myanmar, Nepal, and Sri Lanka were identified as focused-support countries in the WHO South-East Asia Region. The shared care centers model implemented in Myanmar and Nepal is one of the key activities in these countries.
Shared care center refers to an organized networking of childhood cancer treatment centers with hospitals at the zonal or provincial level that do not have the capacity for the independent management of childhood cancer, such that they are supported by the tertiary childhood cancer centers to deliver part of the treatment.
The most basic component of shared care model of childhood cancer care is the delivery of maintenance phase treatment of acute lymphoblastic leukemia, the most common form of childhood cancer. One of the other objectives of the shared care model is to enable some of the shared care centers to gradually take up part of the management of other common childhood cancers including retinoblastoma or Wilms tumor, and all the centers can contribute to palliative care.
“Shared care centers play a crucial role in bringing part of the care nearer to the homes of the people who need it the most. In addition, shared care centers can be developed as hubs for capacity-building efforts for the primary health care workforce in early detection, counseling, and referral. In the long run, some of the shared care centers could evolve as independent childhood cancer management centers,” said Dr Rajesh Sambhajirao Pandav, WHO Representative to Nepal.
Cancer treatment facilities are not widely available in Nepal. Kanti Children’s Hospital (KCH) in Kathmandu, the largest tertiary care exclusive children’s general hospital in Nepal was the first hospital in the country to have started treatment of childhood cancer. It is also Nepal’s nodal institute of the South-East Asia Childhood Cancer Network (SEAR-CCN).
While children with cancer come to the KCH for treatment from all over Nepal, the hospital, in turn, has established shared care center networking with three other hospitals in the country with support from WHO, St. Jude Children’s Research Hospital, and World Child Cancer, and plans to expand the network further.
One such shared care center is the Sushil Koirala Prakhar Cancer Hospital (SKPCH) located in Banke district in western Nepal. Established recently, the plan is to upgrade SKPCH into a full-fledged cancer hospital within a few years. The hospital provides chemotherapy-based treatment for adult patients and carries out some basic surgeries. Diagnostic radiology facilities and radiation therapy equipment are being installed gradually. The hospital, however, does not currently have standalone pediatric oncology services.
Sushil Koirala Prakhar Cancer Hospital (SKPCH) (Photo credit: SKPCH)
The pediatric oncology team at Kanti Children’s Hospital, Kathmandu, Nepal, (Photo credit: Dr Sudhir Sapkota)
The two-day onsite training for health care personnel at SKPCH included a general overview of childhood cancers and the management of children with acute leukemia, with a focus on the maintenance phase treatment and emergencies. The training programme participants included adult-oncology physicians, general physicians, and nurses. At the end of the training, the participants felt confident of being able to manage patients in the maintenance phase of acute lymphoblastic leukemia treatment.
A training session on Shared Care Center at Sushil Koirala Prakhar Cancer Hospital in December 2021. (Photo credit: Dr Bishnu Rath Giri, WHO)
In subsequent weeks, the SKPCH team started delivering the maintenance phase treatment with monthly pulse of vincristine and dexamethasone and catering to non-complicated follow-up visits. Children from the western part of Nepal who had to travel to the Kanti Children’s hospital to get maintenance phase treatment were now being offered the same treatment at SKPCH.
“The provision of shared care center has greatly helped families by reducing their financial burden. It has also improved the compliance of patients which is expected to be reflected in overall survival as well,” said Dr. Sudhir Sapkota, Pediatric Oncologist from Kanti Children’s Hospital.
In the initial weeks, individual case-based telephonic consultation was provided by the Kanti Children’s Hospital team. After this, families were required to visit Kanti Children’s Hospital in Kathmandu only once in three months for receiving intrathecal chemotherapy, instead of the usual one-monthly visits. This drastically reduced the cost of travel and being away from work and school during follow-up visits.
In one year, families of over a hundred children have opted for treatment in the shared care centers of Kanti Children’s Hospital, and many of them now request for capacity building of the shared care center so that even intrathecal chemotherapy could be provided from there. When adopted by all other treatment centers, and expanded all over Nepal, this model can potentially help more than three thousand children on active treatment and follow-up for cancer.
Challenges and the road ahead
While the South-East Asia Regional Childhood Cancer Network (SEAR-CCN) and St. Jude Children’s Research Hospital, WHO collaborating center for childhood cancer, continue to work on developing resource guides for the shared care centers, there is a need for further standardization of the training materials and building a pool of trainers.
The shared care center network needs to be gradually expanded to cover additional areas especially remote and hard-to-reach areas. Referral pathways need to be standardized across centers. Continued mentorship, follow-up, and periodic training are crucial to ensure the sustainability and success of the programme.
Nepal’s successful efforts to expand access to childhood cancer care is a model that can potentially change the cancer care landscape and thereby impact hundreds of thousands of lives in Nepal and across the world.
As someone who has experienced firsthand the difference that improved access to childhood cancer care has made, Bir Bahadur Chand actively encourages all families with children who are undergoing the maintenance phase of treatment and who stay near Khajura to continue treatment from the nearby SKPCH. He says, “if all the services, like the ones at Kanti Children’s Hospital can be made available in Khajura, it would be a matter of great comfort to children and parents.”