Barriers to Childhood Cancer Care in India: What Families and Healthcare Providers Say (InPOG-ACC-16-03)
Children with cancer in India have lower cure rates than those in high-income countries, partly because of delays in accessing diagnosis and treatment. A qualitative study was conducted to explore the perspectives of both caregivers and healthcare providers across seven tertiary cancer centres in New Delhi and Hyderabad. Interviews included 39 caregivers and 27 healthcare professionals—including oncologists, nurses, resident doctors, social workers, psychologists, dieticians, and a radiotherapist the barriers to accessing childhood cancer care in India as well as the implications of these perspectives for achieving Universal Health Coverage (UHC) across seven tertiary hospitals (3 public, 3 private, and 1 charitable trust hospital) in New Delhi and Hyderabad were covered. From the caregiver perspective, the study identified three major themes: (1) delays in diagnosis and treatment, (2)
the importance of social support, and (3) the cumulative emotional and financial burden on families. Caregivers described two key phases in their journey: before reaching a specialist hospital and after arrival at the treatment centre. Most caregivers, especially those from distant geographical areas had variable and inconsistent referral pathways partly due to poor availability of specialist doctors and diagnostic facilities outside major cities, influence from family or friends, and long travel times. Upon reaching the hospital, families mostly from public hospitals faced challenges navigating the hospital facilities, finding accommodation, and comprehending the diagnosis and treatment pathway. Throughout both phases, financial constraint was a recurring issue amongst low-income families. The caregiver’s knowledge and awareness of the disease and health system, religious and social factors
were also common barriers. Further, barriers identified by health care providers included supply-side barriers (e.g. lack of infrastructure, administrative and organisational issues, inadequate social support, lack of appropriate palliative care facilities and inadequate contributions by the government to support health service delivery) and demand-side barriers (e.g. relational and social beliefs of families, limited knowledge and awareness of the disease and health system and financial problems).The study highlights that barriers to childhood cancer care in India extend beyond the hospital and begin well before diagnosis. Improving referral systems, reducing financial and logistical burdens, and strengthening caregiver support could facilitate earlier diagnosis, timely treatment, and ultimately improve outcomes for children with cancer. Also, health care provider perceptions are shaped
by their experiences, interests and standpoints, which are useful towards informing policy for childhood cancers within UHC.
DOI - 10.1186/s12889-019-7911-x
DOI - 10.1186/s12889-020-09758-3
Parental Delays Drive Late Diagnosis and Treatment of Childhood Retinoblastoma in India (InPOG-RB-19-01).
Delayed diagnosis and treatment are major contributors to poor outcomes in children with retinoblastoma. The INPHOG-RB-19-01 prospective multicentre study enrolled 1,120 newly diagnosed RB patients from 20 centres over 36 months to evaluate lag time and its determinants. Lag time was subdivided into parent-lag time (symptom onset to first consult) and system-lag time (including diagnosis lag time, defined as first consult to diagnosis, and treatment lag time, defined as diagnosis to treatment initiation. The study found that the mean interval from symptom onset to treatment initiation was 4.2 months. Parental, diagnosis, and treatment lag time contributed to 44%, 26%, and 31% of the total lag time, respectively. Longer lag time was independently associated with the stage at presentation, lower socio-economic status, increased distance from treating
centre, younger maternal age at pregnancy, family history of cancer, and first consultation with a non-specialist, and while higher maternal education was associated with shorter delays. The findings highlight that parental delay is the primary driver of delayed diagnosis and treatment in retinoblastoma, emphasizing the efforts for earlier diagnosis, therefore, need to be directed towards community awareness and routine screening during contact with healthcare professionals, such as at immunization.
DOI - 10.4103/IJO.IJO_3031_24
Two Out Of Three Children with Cancer Had Their Care Impacted During COVID-19 Pandemic (InPOG-ACC-20-04)
The coronavirus disease 2019 (COVID‐19) pandemic led the Indian government to announce a nationwide lockdown on March 23, 2020. This study aimed to explore the impact of the pandemic on the accessibility of care for children with cancer and to view strategies adopted by hospitals for service delivery. Weekly average of childhood cancer (≤18 years) patient registrations during pre‐lockdown period (January 1 to March 23, 2020) were compared with post‐lockdown period (March 24 to May 31, 2020). The effect on the scheduled treatment was investigated for post‐lockdown period. A survey of health care providers was conducted to determine center’s adopted strategies. Across 30 centres, childhood cancer registrations declined by 47.9% after the lockdown, with patients travelling shorter distances and fewer older children presenting for care. During the post-lockdown period, 36.1% of children scheduled
for chemotherapy, surgery, radiotherapy, or hematopoietic stem cell transplantation experienced treatment delays. Center’s adopted several strategies including modifications to treatment protocols, increased use of growth factors, and increased support from social organizations. This multicentre study from India suggests that the COVID‐19 pandemic and the lockdown impacted 2 out of 3 children with cancer and highlight the importance of adaptive healthcare strategies during public health emergencies.
DOI - 10.1002/cncr.33945
Fertility Preservation Remains Out of Reach for Adolescents with Hodgkin Lymphoma in India (InPOG-HL-15-01)
India sees approximately 10,699 new cases of lymphoma in children and adolescents annually, with about half being Hodgkin lymphoma (HL). Cure rates for HL are high, shifting focus to minimizing late effects such as infertility, which varies by treatment intensity. Fertility preservation (FP) was recommended in the InPOG-HL-15-01 trial but not mandatory for adolescents. Data on FP was collected at enrolment. Of 99 patients aged 13 or older (FP data available for 95), only 7 (7.4%) were offered FP, mostly in private sector and predominantly to males. Four patients declined FP, one attempt was unsuccessful, and only two (both males in private sector) successfully achieved FP. Further, a survey of healthcare providers at participating centres was done to rank barriers to FP for adolescent HL patients. The top barriers in Public/Trust hospitals were affordability and accessibility to fertility
centres/specialists. Similarly, in private hospitals, cultural acceptance was the top barrier, followed by low perceived risk of infertility and affordability for males and time required for FP was the top barrier, followed by affordability and cultural acceptance for females was the top barrier. Other barriers (lower ranked): Inadequate provider knowledge, concerns about FP effectiveness, and fear of treatment abandonment. The study highlights extremely low rates of FP offered to adolescents with HL in India, especially in the public sector. Work also needs to be done in the future to understand better the decision making of adolescents and their parents with regards to FP.
DOI - 10.1016/j.phoj.2022.10.245
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