An assessment of childhood cancer care services in India - gaps, challenges and the way forward

Summary

Background

Childhood cancers are emerging as an essential concern in India where there is lack of a specific programme component or policy to address childhood cancer control. There is limited information on the status and quality of childhood cancer care services in India. This paper describes the childhood cancer care services available at secondary and tertiary-level hospitals in India through a cross sectional study design.

Methods

The survey was conducted in 137 tertiary-level and 92 secondary-level hospitals in 26 states and 4 Union Territories (UTs), ensuring a uniform representation of public and private care hospitals. The study tool collected data on the organisational infrastructure, type of oncology services, health workforce, equipment, treatment and referral protocols, and treatment guidelines. Descriptive statistics was used to primarily present the health service status and data on childhood cancer care services in proportions and mean.

Findings

A dedicated pediatric oncology department was available in 41.6% of the public, 48.6% of private, and 64% Non Government Organization (NGO) managed tertiary-level hospitals. In 36 (39%) of the 92 hospitals providing secondary care, childhood cancer care was provided. The availability of bone (41.5%) and positron emission tomography (PET) scans (25.9%) was lower in public tertiary hospitals, whereas histopathology, computerised tomography (CT scan), and magnetic resonance imaging (MRI) were lower in public secondary hospitals than private and NGO managed hospitals for the corresponding level of care. Most tertiary hospitals had the required supportive care facilities except for play therapy and hospice care. Less than 50% of the public tertiary hospitals had stocks of the four categories of cancer-treating drugs and essential infrastructure for radiotherapy and chemotherapy. Most secondary-level hospitals not treating childhood cancer had referral linkages with tertiary hospitals.

Interpretation

The situational analysis of childhood cancer care services in India showed the concentration of availability of childhood cancer care services at the tertiary level of health care. There were gaps in the availability of specialised pediatric oncology care in all the tertiary hospitals. The availability of childhood cancer care services was higher in private and NGO-managed hospitals than in public hospitals. Integration of childhood cancer as a part of the national cancer control response should be taken up as a matter of priority. The need of the hour is to formulate a childhood cancer policy that will enable timely access to care universally.

Funding

World Health Organization, India provided funding and technical support.

Research in context.

Evidence before this study

The first paediatric oncology unit in India was started as early as the 1960s and the number of such units has been increasing since the 1980s. A national survey of childhood cancer services conducted in 1988 observed that paediatric oncology cases were handled by adult oncologists in 50% of the surveyed centres. Most paediatric cancer care centres in India are urban-centric, leading to delayed access by the rural population. It is seen that children with cancer often present with an advanced-stage disease which worsens the outcome. We did a MEDLINE search for studies on the status of childhood cancer care services in India using the search terms “childhood” OR “children” AND “cancer” AND “care service” OR “health service” AND “situation” OR “situational analysis” OR “status” AND “India”. Most studies had been done in selected geographic settings and did not provide a comprehensive country presentation. Thus there is a limited information on the status and quality of childhood cancer care services in India.

Added value of this study

The situational analysis of childhood cancer care services in India was done in vast majority of states and Union Territories, covering a wide representative network of hospitals providing tertiary and secondary level of care. The study has generated evidence on the availability of childhood cancer related diagnostic, treatment and supportive care facilities, health workforce, referral pathways, physical infrastructure and drug availability.

Implications of all the available evidence

Developing evidence-based policies for childhood cancer requires a situational analysis of childhood cancer services in the country. Such interventions will enable high-quality care within limited health care resources, culminating in improved survival and quality of life of pediatric cancer patients in India.

Introduction

Childhood cancers rank ninth as a leading cause of childhood diseases globally, accounting for 11.5 million (10.6–12.3 95% CI) of the Disability Adjusted Life Years (DALYs').¹ As many as 80% of children at risk of childhood cancer reside in low and middle-income countries (LMICs).²

In 2017, childhood cancer ranked fifth as a leading cause of death among children between five and 14 years.³ In high-income countries, while the five-year survival rate for childhood cancer exceeds 80%, such outcomes are not seen in the LMICs.^4,5 The low survival rate is mainly attributed to weak health systems in LMICs'. Childhood treatment services are primarily available at tertiary care facilities and display an urban skewing regarding availability and ease of accessibility. Access to childhood cancer care is characterised by weak infrastructure, lack of supportive care and poorly defined care pathways. Many children present with advanced disease at the time of presentation.^6,7

According to a recent National Cancer Registry Programme (NCRP) report in India, childhood cancers in the 0–14 age group accounted for 4.0% of all cancers.⁸ The Population Based Cancer Registry in Delhi reported the highest age-adjusted incidence rate (AAR) of 203.1 per million in boys and 125.4 per million in girls.^9,10 Cancers of the eye and lymphoid leukaemia contributed to the highest disability-adjusted life years (DALYs) in 2016 among children in the 0–14 age group.¹¹

The Ministry of Health and Family Welfare, Government of India, has been striving to achieve cancer control by implementing the National Programme for Prevention and Control of Non Communicable Diseases (NP-NCD). However, the country does not have a specific programme component or policy to address childhood cancer. There is limited information on the status, distribution, and quality of childhood cancer care services in India. Most studies have been done in selected geographic settings and do not provide a comprehensive country presentation.12, 13, 14 Developing a programme component or policy for childhood cancers requires a situational analysis of childhood cancer services. This paper describes the cross sectional survey results on the status of childhood cancer care services available at secondary and tertiary-level hospitals in India.

Methods

Study setting

The survey was conducted in hospitals providing tertiary and secondary level of care in 26 states and 4 Union Territories (UTs). ICMR-NCDIR (National Centre for Disease Informatics and Research) played the role of a central coordinating unit through survey tool development, technical support, supervision, monitoring, feedback and data management. The study was conducted between July and October 2021.

A nodal childhood cancer treating hospital, preferably within the operational network of Hospital Based Cancer Registries (HBCRs') under the National Cancer Registry Programme (NCRP), managed by the ICMR- NCDIR in each state or Union Territory, was identified as the ‘hub centre’ to coordinate the survey in the state. The nodal hospital was asked to identify a representative network or the ‘spoke centres’ consisting of three to five cancer-treating hospitals (tertiary level) and two to three district/sub-district hospitals (secondary level), which were purposively selected. The ‘hub centres’ monitored and coordinated data collection from these hospitals and verified the data that was so collected. Besides, data was also collected from the hub centres themselves. Hospitals at the tertiary level comprised those at the third tier of the health system where specialised treatment and care were provided, usually based on a referral. Secondary-level hospitals were those at the second tier of the health system, which attended to patients referred from health centres at the primary level or back referrals from tertiary hospitals. Attempts were made to give uniform representation to the public (government owned and funded), private (owned by private players; largely for profit), and NGO (non-profit, funded through charitable organisations) managed hospitals. The tertiary hospitals included (a) Public: Regional Cancer Centres (RCC), Tertiary Cancer Care Centres TCCCs', State Cancer Institutes (SCI), medical colleges and super speciality hospitals (b) Private/NGO managed: super speciality and private medical colleges. The secondary level hospitals comprised (a) Public: District hospitals (without a medical college)/Sub-district hospitals (b) Private: Multispeciality hospitals (without a specialised cancer department).

Study tool

The study tool was adapted from the WHO Service Availability and Readiness Assessment (SARA), a health facility assessment tool designed to assess and monitor service availability and the WHO list of priority medical devices for cancer management, and the Indian Public Health Standards.15, 16, 17 The tool collected data on the organisational infrastructure, type of oncology services, health workforce, availability of diagnostic facilities and medicines at tertiary and secondary level hospitals. The availability of childhood cancer-treating medicines was categorised as (i) available, (ii) usually available but out of stock at the time of the study (iii) not available. Further data on physical infrastructure, pediatric oncology training and the impact of COVID-19 on childhood cancer care at tertiary hospitals were recorded. The questionnaire was administered through an online portal. The nodal hospitals that consented to participate in the survey were provided with secure login credentials to access the portal and enter relevant data in the questionnaires for the participating hospitals in the respective state/UT.

Data management and analysis

The collected data was scrutinised for irrational entries, anomalous and missing values. Data quality checklists were sent to the nodal hospitals for feedback and rectification. Data analysis was done using Microsoft Excel. Descriptive statistics was used primarily to present the data on childhood cancer care services in terms of proportions and mean. Responses to open-ended questions were analysed and presented as proportions.

Ethics approval

The study was approved by the Institutional Ethics Committee of the ICMR-NCDIR [NCDIR/IEC/3041/2021].

Role of the funding source

World Health Organization, India, provided funding and technical support for the study. They had no role in the conceptualisation and drafting of this manuscript.

Results

A total of 137 tertiary level hospitals and 101 secondary level hospitals had been approached for their participation, out of which all 137 (100%) tertiary level hospitals and 92 (91%) secondary level hospitals consented to participate. Supplementary Figure S1 shows the distribution of participating hospitals in the 26 states and 4 Union Territories. Among these-56.2% were government-run and 51.1% were medical college-associated hospitals. The categorisation of hospitals according to the primary ownership is presented in Table 1.

Table 1.

Categorisation of hospitals according to the major source of financial support.

Type of hospital	Public		Private		NGO-managed		N	%
	n	%	n	%	n	%
Tertiary level hospitals
Medical college hospital	53	68.8	11	31.4	6	24.0	70	51.1
Super speciality (oncology)	12	15.5	8	22.8	12	48.0	32	23.4
Multispecialty with dedicated oncology unit	12	15.5	16	45.7	7	28.0	35	25.5
Total number of tertiary hospitals	77	56.2	35	25.5	25	18.2	137	100
Secondary level hospitals	64	69.5	23	25.0	5	5.4	92	100

Childhood cancer management

Tertiary hospitals

A dedicated pediatric oncology department was available in 41.6% of the public, 48.6% of private, and 64% NGO managed tertiary level hospitals, as shown in Table 2. A pediatric oncologist was available in 48% of the public, 54.3% of private and 64% of the NGO-managed hospitals. A higher proportion of public tertiary hospitals provided childhood cancer treatment through general pediatric medicine (77.9%), pediatric surgery (62.3%), internal medicine (61%) and surgical departments (71.4%). Nurses trained in pediatric oncology were available in 41.5% of the public, 48.6% of private, and 72% of NGO-managed hospitals. Most tertiary hospitals had a blood bank, facilities for nutritional rehabilitation, physiotherapy, psychological counselling, dental care, immunisation, growth and development and parental education. However, less than a third of these hospitals provided play therapy and hospice care (Table 2).

Table 2.

Availability of childhood cancer treatment-related departments at tertiary hospitals.

S. No.		Public		Private		NGO/charitable
		n = 77		n = 35		n = 25
		n	%	n	%	n	%
Cancer treatment departments
1	Pediatric Oncology	32	41.6	17	48.6	16	64.0
2	Medical Oncology	35	45.5	22	62.9	15	60.0
3	Radiation Oncology	52	67.5	24	68.6	17	68.0
4	Surgical Oncology	41	53.2	24	68.6	17	68.0
5	Pediatric medicine	60	77.9	24	68.6	16	64.0
6	Medicine	47	61.0	20	57.1	11	44.0
7	Haematology	33	42.9	20	57.1	13	52.0
8	Pediatric surgery	48	62.3	20	57.1	11	44.0
9	Surgery	55	71.4	19	54.3	11	44.0
10	Ophthalmology	50	64.9	21	60.0	9	36.0
11	Musculoskeletal oncology	7	9.1	7	20.0	9	36.0
12	Orthopaedics	61	79.2	23	65.7	12	48.0
13	Neurosurgery	47	61.0	23	65.7	10	40.0
14	Radiology	66	85.7	31	88.6	22	88.0
15	Nuclear medicine	27	35.1	18	51.4	11	44.0
16	Pathology	71	92.2	31	88.6	24	96.0
17	Palliative medicine	37	48.1	20	57.1	18	72.0
Supportive care facilities
1.	Blood bank	72	93.5	30	85.7	18	72.0
2.	Nutritional rehabilitation	54	70.1	32	91.4	20	80.0
3.	Physiotherapy	72	93.5	34	97.1	21	84.0
4.	Psychological counselling	61	79.2	27	77.1	22	88.0
5.	Parental education	58	75.3	25	71.4	17	68.0
6.	Occupational therapy	39	50.6	19	54.3	14	56.0
7.	Hospice care	26	33.8	13	37.1	6	24.0
8.	Dental care	69	89.6	32	91.4	14	56.0
9.	Play therapy	29	37.7	10	28.6	7	28.0
10.	Growth and development	60	77.9	29	82.9	16	64.0
11.	Immunisation	66	85.7	32	91.4	16	64.0
12.	Fertility Preservation services	14	18.2	11	31.4	4	16.0
13.	Parental groups	29	37.7	14	40.0	14	56.0
14.	Accommodation/lodging for patients and caregivers	40	51.9	15	42.9	17	68.0
Dedicated human resourcesfor childhood cancer treatment
15	Pediatric oncologist (Pediatrician working exclusively with childhood cancer)	37	48.0	19	54.3	16	64
16	Pediatric oncosurgeon	11	14.2	6	17.1	7	28.0
17	Nurses trained in pediatric cancer	32	41.5	17	48.6	18	72.0
18	Occupational therapist	32	41.5	17	48.6	13	52.0
19	Social worker	59	76.6	24	68.6	20	80.0
20	Counsellor	50	64.9	24	68.6	19	76.0

Over two-thirds of the government tertiary hospitals had referral linkages with lower-tier hospitals not having specialised paediatric oncology services; however, such links were seen in less than half (45.7%) of the private tertiary hospitals. More public hospitals (76.6%) adopted a multidisciplinary treatment approach compared to 35% of private hospitals.

Secondary hospitals

Childhood cancer treatment was provided in 36 (39%) of the 92 hospitals providing a secondary level of care; the proportion was higher for private hospitals (56.5%) and NGO-managed hospitals (40%) than in public hospitals (32.8%). The pediatric medicine departments managed childhood cancers at these hospitals in over 70% of these hospitals (Supplementary Figure S2). Most secondary-level hospitals had blood banks, physiotherapy, counselling and dietary services facilities. However, a lower percentage of public (33.3%) and private (16.7%) secondary hospitals had provisions for occupational therapy (Supplementary Figure S3). Among the secondary-level hospitals (56) that were not treating childhood cancers, all the NGOs managed, and 74.4% of public hospitals, compared to 60% of private hospitals, had referral linkages with tertiary hospitals (Supplementary Figure S4).

Diagnostic facilities

Tertiary hospitals

Over 90% of the tertiary hospitals had facilities for histopathology diagnosis; however, a lower proportion of public tertiary hospitals had facilities for advanced diagnostic modalities (flowcytometric Immunophenotyping-33.7%, cytogenetics-19.4%). More than 80% of the tertiary hospitals had Computed Tomography (CT) scans, Magnetic Resonance Imaging (MRI) and ultrasound scan facilities. In contrast, the availability of bone and PET scans was lower, especially in public tertiary hospitals (Supplementary Table S1).

Secondary hospitals

Most childhood cancer treating secondary-level hospitals had facilities for basic laboratory and radiologic investigations. Compared to private hospitals, histopathology, CT scan, and MRI availability was lower in public secondary-level hospitals (Supplementary Table S2).

Cancer treatment drugs

Tertiary hospitals

Regarding childhood cancer-treating drugs, less than 50% of the public tertiary hospitals had stocks available for the four categories of cancer-treating medications (Fig. 1), while majority of the private and NGO managed hospitals had supplies of all four drugs available. The availability of targeted therapies was the lowest (35.4% in public tertiary hospitals, compared to 66.8% in private and 68.8% in NGO managed hospitals). Free medicines were available in less than 40% of the tertiary hospitals, the lowest availability being in private hospitals (Fig. 2). In public tertiary hospitals, palliative drugs were free of cost at about one-third of the hospitals, followed by supportive medicines (29.3%), antineoplastic medicines (26.3%) and targeted therapies (20.5%).

Fig. 1.

Availability of childhood cancer treating drugs at tertiary hospitals (%).

Fig. 2.

Cost of childhood cancer treating medicines available at tertiary hospitals (%).

Secondary hospitals

Among the childhood cancer treating secondary level hospitals, the proportion of public hospitals with sufficient stock of routine chemotherapeutic and symptom-relieving medication was lower than private and NGO-managed centres (Fig. 3a). Less than half of public hospitals had adequate supplies of Dexamethasone, Vincristine, 6—Mercaptopurine, L Asparaginase, Methotrexate injection and tablet, Cytarabine and Cyclophosphamide (Fig. 3b).

Fig. 3.

a) Availability of drugs for treating childhood cancers at secondary level public hospitals (%). b) Availability of drugs for treating childhood cancers at secondary level private hospitals (%).

Physical infrastructure

Concerning the infrastructure for treating childhood cancers, less than 50% of the public tertiary hospitals had a separate room for managing children with severe neutropenia, safety measures for preparing chemotherapy drugs and daycare beds with infusion chairs (Fig. 4). The proportion of availability was higher for the private and NGO-managed hospitals.

Fig. 4.

Availability of infrastructure relevant to managing childhood cancer services at the tertiary hospitals.

Capacity building

Less than 10% of the tertiary-level hospitals had provision for training courses in pediatric oncology, as seen in Table 3. While none of the surveyed private hospitals provided D.M. pediatric oncology, a higher proportion of private hospitals had facilities for FNB in pediatric oncology and IAP PHO Fellowship (8.6% for both versus 5.2% in public tertiary hospitals).

Table 3.

Availability of pediatric oncology training courses at tertiary hospitals.

Courses	Public (N = 77)		Private (N = 35)		NGO/charitable (N = 25)		Total
	n	%	n	%	n	%	n	%
Doctorate of Medicine in Pediatric oncology	4	5.2	0	0.0	1	4.0	5	3.7
Fellow of National Board in Pediatric Oncology	4	5.2	3	8.6	2	8.0	9	6.7
Indian Academy of Pediatrics-Pediatric Hematology Oncology Fellowship	4	5.2	3	8.6	4	16.0	11	8.1
Fellowship in pediatric oncology (Besides FNB and IAP PHO)	3	3.9	2	5.7	4	16.0	9	6.7
Diploma in oncologic nursing	6	7.8	3	8.6	3	12.0	12	8.9
Certificate course in pediatric oncology for nurses/doctors	4	5.2	2	5.7	2	8.0	8	5.9
Any other	4	5.2	4	11.4	4	16.0	12	8.9

Impact of COVID-19 on the delivery of childhood cancer treatment

COVID-19 impacted the delivery of childhood cancer care services at over half of the tertiary-level hospitals [Table 4]. There was a decrease in new paediatric cancer diagnoses, increased treatment abandonment, reduced surgical care and interruptions in radiotherapy at most hospitals. Some frequently employed approaches to address childhood cancer care included telemedicine and modifications in chemotherapy regimens.

Table 4.

Impact of COVID-19 pandemic on the delivery of childhood cancer care services at tertiary hospitals.

S. No.	Delivery of childhood cancer care services	Public (n = 77)		Private (n = 35)		NGO/charitable (n = 25)
		n	%	n	%	n	%
		44	57.1	18	51.4	13	52.0
1.	Complete closure of paediatric cancer care services	3	6.8	0	0	1	7.6
2.	Ceased evaluating new cases of suspected cancers	14	31.8	3	16.6	3	23.0
3.	Decrease in new paediatric cancer diagnoses	31	70.4	11	61.1	10	76.9
4.	Increase in treatment abandonment	32	72.7	9	50.0	9	69.2
5.	Reduced surgical care	20	45.4	8	44.4	4	30.7
6.	Modifications in chemotherapy regimens	25	56.8	8	44.4	9	69.2
7.	Interruptions in radiotherapy	21	47.7	9	50.0	5	38.4
8.	Unavailability of chemotherapy agents	17	38.6	6	33.3	3	23.0
9.	Shortage of blood products	21	47.7	9	50.0	9	69.2
10.	Telemedicine use	21	47.7	4	22.2	6	46.1

Discussion

The results from this first kind of national survey provide a comprehensive description of childhood cancer care services in tertiary and secondary level hospitals in most states and Union Territories in India. A pediatric oncologist was available in less than half of the tertiary hospitals. The availability of pediatric oncologists has been shown to vary in a baseline survey conducted in ten LMICs'.¹⁸ Ukraine had the highest ratio of pediatric oncologists per childhood cancer patient (1:4), followed by the Philippines (1:10), Egypt (1:23) and Venezuela (1:28). The ratio ranged from 1:50 to 1:750 for the other LMICs' (Bangladesh, Honduras, Morocco, Senegal, Tanzania and Vietnam). Pediatric oncology is in an emerging phase in India and is still lacking in terms of international standards.¹⁹ Earlier studies have shown that pediatric oncologists were available in 10% of the cancer centres in the late 80s'.²⁰ Despite this notable improvement, the mortality-to-incidence ratio for childhood cancers ranges from 17 to 72% in India, compared to 20–24% in the United States and Britain.^21,22

Besides a shortage of trained doctors, the issue of poor childhood cancer outcomes is compounded by resource constraints. In our study, public tertiary hospitals reported low availability of nurses trained in pediatric oncology, advanced diagnostic modalities, bone and PET scans, childhood cancer dedicated beds and physical infrastructure for chemotherapy administration, and insufficient stock of chemotherapeutic medicines compared with private hospitals. Similar gaps in public hospitals compared to private and NGO-managed hospitals were observed in a qualitative study conducted in seven tertiary hospitals in Delhi and Hyderabad.¹² Childhood cancer care services in public hospitals were characterised by inadequate human resources and patient navigation services. Likewise, insufficient infrastructure and human resources concerning childhood cancer care were encountered in other LMICs' including Iraq, Jordan, Egypt, Lebanon and Pakistan.²³

Providing optimal supportive care services help ensures favourable outcomes in childhood cancer patients. Even after the primary treatment is completed, childhood cancer survivors need long-term follow-up and supportive care even into adult life to address the delayed adverse effects of chemotherapeutic agents. In our study, most tertiary hospitals provided a wide range of support services, except for play therapy and hospice care. The proportion of public tertiary hospitals that adopted a multidisciplinary treatment approach was twice that of private hospitals. In countries with limited resources, a multidisciplinary treatment approach is shown to double the five-year event-free survival rate from 32% to 63% and improve the quality of life of childhood cancer patients due to a shift in focus from ‘survival’ to ‘thriving'.²⁴ Our survey shows that many childhood cancer-treating medicines were unavailable at public tertiary hospitals. Access to essential and affordable pediatric cancer-treating medication ensures a continuum of care and prevents follow-up loss. In India, 70% of the out-of-pocket (OOP) healthcare expenditure is for medicines alone.²⁵ OOP expenditure for cancer treatment is the highest compared to other diseases in India.²⁶ The central and state governments have launched health insurance schemes to provide financial packages that offer coverage for various health expenditures on childhood cancer care. The Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PM-JAY) was launched in 2018 to provide financial assistance for secondary and tertiary care hospitalisation and comprises oncology benefit packages for paediatric cancer.

The availability of childhood cancer care at the secondary level of care hospitals showed a wide gap, with a little over one-third having childhood cancer care services. While tertiary hospitals are the core source of childhood cancer treatment, secondary-level hospitals could play a crucial role in early diagnosis, referral and follow-up. On a positive note, over three-quarters of the public secondary hospitals had formal referral linkages with tertiary-level hospitals.

The situational analysis of childhood cancer care services in India showed a concentration of the availability of childhood cancer care services at the tertiary level of health care. There were gaps in the availability of specialised pediatric oncology care in all the tertiary hospitals. The availability of oncology departments, advanced diagnostics, dedicated beds for childhood cancer patients, physical facilities for chemotherapy, and available medicines in stock were higher for private tertiary hospitals. An ideal pediatric oncology unit consists of dedicated clinicians and nurses trained in pediatric cancer management with sufficient health facility infrastructure, supportive care and availability of chemotherapy drugs in stock. The functioning of a pediatric care unit should also be extended to providing follow-up and palliative care to patients and training and capacity building for health care professionals.

While setting up a specialised unit may not be feasible in every hospital, providing these services through existing infrastructure with the necessary facilities for diagnosis and treatment may be the best way forward.¹⁹ Pediatric oncology service could be expanded by strengthening referral and back referral linkages between a tertiary nodal hospital and secondary health facilities. This could also be achieved through a robust end-to-end technological connectivity between the cancer-treating hospital and the district hospital using telemedicine services to enable early diagnosis and initiation of treatment. Expanding pediatric oncology training courses and programmes for health professionals, including doctors and nurses, should receive strong support from professional organisations for building a robust childhood cancer-treating health workforce.

The need of the hour is to formulate a National Childhood Cancer Policy that comprises early detection, access to affordable care, and comprehensive supportive care services through well-defined care pathways at public health facilities. Adopting the shared care model approach incorporating palliative care into the practice of pediatric oncology could enable the development of a national collaborative policy that would address disparities in access to childhood cancer care.²⁷ It is desirable that all concerned stakeholders, including governing authorities, policymakers, health care providers, civil society organisations and communities, take proactive and collated efforts, considering WHO's global initiative for childhood cancer survival goal of 60% by 2030.^28,29 Regarding addressing financial distress associated with childhood cancer, policymakers could take a cue from Kerala, the first state to introduce the ‘Cancer Suraksha Scheme’-a programme under which free cancer treatment is provided to childhood cancer patients below 18 years of age. Scaling up of Universal Health Coverage (UHC) through the robust implementation of the Ayushman Bharat (PMJAY), India's national health protection scheme, would enable a successful continuum of care through high-quality healthcare services.³⁰ The Integration of childhood cancer as a part of the national cancer control response should be considered by integrating childhood cancer diagnosis with health programmes such as the Reproductive and Child Health programme (RCH) and ‘Rashtriya Bal Swasthya Karyakram’ (RBSK). Likewise, a component of childhood cancer care could be included in the National Programme for Prevention and Control of Non Communicable Diseases (NP-NCD) and school health programmes.

This study was systematically conducted in 26 States and 4 Union Territories in a network of tertiary and secondary-level hospitals. Adequate caution was exercised in giving uniform representation to public/private and NGO-managed hospitals. The study tool comprehensively captured the availability of treatment modalities, human resources, physical infrastructure and drug availability. One of the limitations was that the study could not assess state-wise disparities in the distribution of childhood cancer treatment services since the sample of hospitals was selected by purposive sampling in each state/UT, which could have introduced selection bias, nevertheless, the inclusion of different hospital types could have sufficed to represent the coverage of a diverse population.

Contributors

AN Data curation, formal analysis, methodology, validation, writing-original draftwriting-review and editing, PM: Conceptualization, funding acquistion, supervsion, methodology, writing-review and editing, SKL Software, data curation, validation,writing-review and editing, GKR and LM Data curation, formal analysis, writing-review and editing, RA, RS, SKD,GC: Methodology, writing-review and editing, RPSB, TSW,VKB, AB, NKC, VCR, DSD, SG, CH, MH, SNG, GK, VK, RK, AK, SKDM, GM, SM, SM, AMN, CM, AKP, SP, PP, JLD, VSR, CR, MR, NR, VR, AS, SBS, VS, PS, DS, RS, AT, PKT, ST, LT: Investigation, validation, writing-review and editing.

Data sharing statement

The complete report on ‘Situational analysis of childhood cancer care services in India’ can be accessed at https://www.ncdirindia.org/All_Reports/Childhood_Cancer/Default.aspx. Further data will be made available upon a reasonable request over email to the corresponding author.

Editor note

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Declaration of interests

None to declare.