Impact of Cancer Support Groups on Childhood Cancer Treatment and Abandonment in a Private Pediatric Oncology Centre

INTRODUCTION

Globally, an estimated 2,50,000 children develop cancer each year, and 80% of them live in developing countries.[1] Cancer is a leading cause of disease worldwide, with an estimated 12.7 million new cancer cases occurring in 2008. If recent trends in major cancers are seen globally in the future, and increasing populations, the burden of cancer will increase to 22.2 million new cases each year by 2030.[2] In India, the reported incidence rate of childhood cancer has increased over the last 25 years. In India, approximately 45,000 children are diagnosed with cancer every year.[3]

Treatment options for children with cancer in developing countries are poor and limited, primarily due to financial constraints, poor compliance, and lack of supportive care. Treatment abandonment is a significant barrier to cancer care in the developing world. Though the reasons for abandonment are complex and multifactorial, economic issue appears to be the main factor in abandonment. We analyzed the impact of financial support of two cancer support groups on treatment and abandonment in pediatric oncology.

MATERIALS AND METHODS

Kanchi Kamakoti CHILDS Trust Hospital is a 200-bedded pediatric hospital and the Department of Pediatric Hematology and Oncology at Kanchi Kamakoti CHILDS Trust Hospital is dedicated to the treatment of children with cancers such as leukemia, lymphomas, brain tumors, solid tumors such as neuroblastoma, Wilms tumor, germ cell tumors as well as bone tumors such as Ewings and osteosarcomas. The department witnesses about 200 outpatients and 70 inpatients per month with an average of 7–10 new cases being enrolled for therapy per month. Our upper age limit for accepting patients is 18 years. This study is a retrospective review of children with cancer, funded by two projects Ray of Light Foundation and Pediatric Lymphoma Project and treated at Kanchi Kamakoti CHILDS Trust Hospital from January 2010 to June 2013. These two projects provide free treatment to children diagnosed with cancer, belonging to both lower and middle socioeconomic groups, thereby contributing to improving the outcome. These two cancer support groups at our institution are solely dedicated to financially support the treatment of children with cancer. The Ray of Light Foundation is a volunteer group driven by a singular mission to help children in their fight against cancer. It takes over the entire treatment costs of children with cancer who cannot afford treatment. The Pediatric Lymphoma Project is dedicated to treatment of children with solid tumors. This project is funded by private funding and covers all the costs of treatment including investigations and management. All children were risk stratified and treated as per the Children's Oncology Group (COG) protocols. Patient data was collected in regards to underlying diagnosis, staging, outcome, and the expense of their treatment was assessed.

RESULTS

During the study period, there were a total of 100 patients funded, 57 by Ray of Light Foundation and 43 by Pediatric Lymphoma Project, as against 70 children who were treated without financial aid. The demographic details of these children are as in Table 1. All of those treated without financial aid belonged to the upper middle (II) and middle/lower middle (III) status, where 60% of those who were in dire need of financial help belonged to lower/upper lower (IV) and lower (V) socioeconomic status and 40% in the middle/lower middle (III) group.

Table 1 Demographic details of children treated for cancer with and without financial aid at our institute

The diagnosis of children treated under both the groups is as shown in Table 2. The total current survival is 80% in the financially aided group and 72% in the non-funded group including those who have completed treatment and those currently undergoing treatment. All the children were on regular treatment without any defaulters in those who were funded. The outcomes of children treated under both the groups are as shown in Figure 1. Abandonment of treatment after initiating therapy was not seen in the financially supported group whereas abandonment of treatment after initiation was seen in one child in the non-funded group. The expenses per patient in leukemia and lymphomas for those who were funded are as shown in Figure 2.

Table 2 Diagnosis of children in the funded and the non-funded groups

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Figure 1

Outcomes of children treated under the financially aided and unaided group

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Figure 2

Expenses per patient

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DISCUSSION

In resource-rich, high-income countries, nearly 80% of children with cancer can be cured by timely, intensive multimodality treatment and robust supportive care. However, in fact, only 20% of the world's children with cancer live in these countries and the remaining 80% reside in resource-poor low-income nations and have a substantially lower chance of survival.[4] About 80% in these resource-poor nations are either not diagnosed or are denied potentially life-saving treatment. Four in five are from low and middle income countries where child cancer is just one of many health priorities struggling for resources.[1] In our institute, all the children who received financial aid belonged to the lower socioeconomic class. These were the families who otherwise would have considered the option of non-initiation of treatment if financial support was not given. Survival rates around 35–40% were reported from a few institutes in India.[5] We achieved a survival rate of around 80%, which is comparable in both the groups. The outcomes were good even in the lower socioeconomic class since they were also provided the full access to multimodality treatment and good supportive care.

Factors such as lack of infrastructure and refusal and abandonment of treatment due to social and economic factors such as limited financial resources, ignorance, and cancer illiteracy contribute to advanced presentations and poor outcomes in a developing country like India.[6] Refusal (non-initiation) and abandonment (non-completion) of treatment often exceeds all other causes of failure of treatment in a child with cancer in a developing country.[7] The single most important factor that surpasses all others factors is the financial resource of the family. Parents report financial burden as the main factor for abandonment since the true cost of therapy in childhood cancer includes the indirect costs (food, lodging, transport, care of siblings, loss of income from loss of employment) apart from the direct costs of therapy.[8] The average family income is 13000 rupees per month overall and 3000 rupees per month in low socioeconomic groups. The monthly income of the family has been shown to be significantly related to abandonment rates.[9] In our study, average family income was 6000 rupees per month in the funded group and 30000 rupees in the non-funded group. The financial support at our institute was provided to those belonging to this low socioeconomic status to undergo therapy irrespective of their risk status. The financial support by these two support groups also included the much-needed supportive care in febrile neutropenia, which resulted in early reporting to hospital during episodes of fever. Since the financial support took care of all the direct costs involved in the treatment of cancer, it significantly reduced the burden on the family. This was reflected by the adherence to therapy by the parents in spite of other factors like ignorance and illiteracy. There was no withdrawal from therapy due to side effects or toxicity of treatment in view of the good supportive care. Abandonment of treatment was seen in one child in the non-funded group due to financial restraints in the family and poor prognosis.

Deaths due to toxicity of treatment or infections (25%, 5/20 and 4/16) were comparable in both the funded and non-funded groups in our study reflecting on the good supportive care that could be given even to the lower socioeconomic patients. In a recent study from a tertiary healthcare establishment in India, of 762 children with acute lymphoblastic leukemia, 30% refused and another 15% abandoned treatment. In India, available data from tertiary centers shows abandonment rates varying from 17-62%.[10]

CONCLUSION

Patients in low income countries benefit from good supportive care and financial support for treatment. Besides intensive treatment with good supportive care, financial support also has an important impact on compliance and abandonment in all the socioeconomic strata of society. Financial support from private cancer support groups also has its impact beyond the patient and family in reducing the burden on government institutions by non-governmental funding in private sector. Improvement in the delivery of pediatric oncology care in developing countries could be improved by financial support from the private sector. As progress is being made to reduce infection-related childhood deaths in India, it should no longer be acceptable to allow children with cancer who have the potential for cure with appropriate treatment to be ignored when treatment abandonment occurs.