Access to care for childhood cancers in India: perspectives of health care providers and the implications for universal health coverage.

BACKGROUND: There are multiple barriers impeding access to childhood cancer care in the Indian health system. Understanding what the barriers are, how various stakeholders perceive these barriers and what influences their perceptions are essential in improving access to care, thereby contributing towards achieving Universal Health Coverage (UHC). This study aims to explore the challenges for accessing childhood cancer care through health care provider perspectives in India. METHODS: This study was conducted in 7 tertiary cancer hospitals (3 public, 3 private and 1 charitable trust hospital) across Delhi and Hyderabad. We recruited 27 healthcare providers involved in childhood cancer care. Semi-structured interviews were audio recorded after obtaining informed consent. A thematic and inductive approach to content analysis was conducted and organised using NVivo 11 software. RESULTS: Participants described a constellation of interconnected barriers to accessing care such as insufficient infrastructure and supportive care, patient knowledge and awareness, sociocultural beliefs, and weak referral pathways. However, these barriers were reflected upon differently based on participant perception through three key influences: 1) the type of hospital setting: public hospitals constituted more barriers such as patient navigation issues and inadequate health workforce, whereas charitable trust and private hospitals were better equipped to provide services. 2) the participant's cadre: the nature of the participant's role meant a different degree of exposure to the challenges families faced, where for example, social workers provided more in-depth accounts of barriers from their day-to-day interactions with families, compared to oncologists. 3) individual perceptions within cadres: regardless of the hospital setting or cadre, participants expressed individual varied opinions of barriers such as acceptance of delay and recognition of stakeholder accountabilities, where governance was a major issue. These influences alluded to not only tangible and structural barriers but also intangible barriers which are part of service provision and stakeholder relationships. CONCLUSION: Although participants acknowledged that accessing childhood cancer care in India is limited by several barriers, perceptions of these barriers varied. Our findings illustrate that health care provider perceptions are shaped by their experiences, interests and standpoints, which are useful towards informing policy for childhood cancers within UHC.

A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India.

BACKGROUND: Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India. METHODS: Semi-structured in-depth interviews were conducted with caregivers of children (< 18 years) diagnosed with cancer in seven tertiary care hospitals across New Delhi and Hyderabad. Purposive sampling to saturation was used to ensure adequate representation of the child's gender, age, cancer type, geographical location and socioeconomic status. Interviews were audio recorded after obtaining informed consent. Thematic content analysis was conducted and organised using NVivo 11. RESULTS: Thirty-nine caregivers were interviewed, where three key themes emerged from the narratives: time intervals to definitive diagnosis and treatment, the importance of social supportive care and the overall accumulative impacts of the journey. There were two phases encapsulating the experiences of the family: referral pathways taken to reach the hospital and after reaching the hospital. 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. CONCLUSION: This qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions addressing these barriers.

How food insecurity could lead to obesity in LMICs: When not enough is too much: a realist review of how food insecurity could lead to obesity in low- and middle-income countries.

While food insecurity is a well-known cause of under-nutrition and stunting, in recent decades it has also been linked with obesity. Understanding and thus minimising the risk factors for obesity in low- and middle-income country contexts, which often lack the health system capacity to treat the consequent obesity-related illnesses, is crucial. This study adopted realist review methodology because it enabled us to analyse and organise the evidence from low- and middle-income countries into a coherent scheme. By comparing this evidence to existing theory on food security and nutrition, we aimed to provide a richer understanding of the nuances and the socio-demographic nature of the food insecurity-obesity relationship. The review generated 13 peer-reviewed articles which studied the relationship between food insecurity and overweight/obesity in low- and middle-income countries. Affordability of high-energy, processed foods was identified as a main mechanism, which determined whether or not food insecurity leads to obesity in low- and middle-income countries. Other mechanisms identified were: quantity and diversity of food consumed; spatial-temporal access to nutritious food; inter-personal food choice and distribution; and non-dietary behaviours. Despite the limited empirical evidence available, our review presents meaningful and policy-relevant insights into the food insecurity-obesity relationship in from low- and middle-income countries. Interventions to address the food insecurity-obesity link need to address diet quality, and demand a broad understanding across a variety of experiences.

Evaluating access to essential medicines for treating childhood cancers: a medicines availability, price and affordability study in New Delhi, India.

INTRODUCTION: Limited access to essential medicines (EMs) for treating chronic diseases is a major challenge in low-income and middle-income countries. Although India is the largest manufacturer of generic medicines, there is a paucity of information on availability, price and affordability of anti-neoplastic EMs, which this study evaluates. METHODS: Using a modified WHO/Health Action International methodology, data were collected on availability and price of 33 strength-specific anti-neoplastic EMs and 4 non-cancer EMs. Seven 'survey anchor' hospitals (4 public and 3 private) and 32 private-sector retail pharmacies were surveyed. Median price ratios (MPRs) were calculated by comparing consumer prices with international reference prices (IRPs). RESULTS: On average, across survey anchor areas (hospital and private-sector retail pharmacies combined), the mean availability of anti-neoplastic EMs and non-cancer medicines was 70% and 100%, respectively. Mean availability of anti-neoplastic EMs was 38% in private-sector retail pharmacies, 43% in public hospital pharmacies and 71% in private hospital pharmacies. Median MPR of lowest-priced generic versions was 0.71 in retail pharmacies. The estimated cost of chemotherapy medicines needed for treating a 30 kg child with standard-risk leukaemia was INR 27 850 (US$442) and INR 17 500 (US$278) for Hodgkin's lymphoma, requiring 88 and 55 days' wages, respectively, for the lowest paid government worker. CONCLUSION: Most anti-neoplastic EMs are found in survey anchor areas, however, mean availability was less than non-cancer medicines; not meeting the WHO target of 80%. Medicine prices were relatively low in New Delhi compared with IRPs. However, the cost of chemotherapy medicines seems unaffordable in the local context.

Reporting of ethics in peer-reviewed verbal autopsy studies: a systematic review.

Introduction: Verbal autopsy (VA) is a method that determines the cause of death by interviewing a relative of the deceased about the events occurring before the death, in regions where medical certification of cause of death is incomplete. This paper aims to review the ethical standards reported in peer-reviewed VA studies. Methods: A systematic review of Medline and Ovid was conducted by two independent researchers. Data were extracted and analysed for articles based on three key areas: Institutional Review Board (IRB) clearance and consenting process; data collection and management procedures, including: time between death and interview; training and education of interviewer, confidentiality of data and data security; and declarations of funding and conflict of interest. Results: The review identified 802 articles, of which 288 were included. The review found that 48% all the studies reported having IRB clearance or obtaining consent of participants. The interviewer training and education levels were reported in 62% and 21% of the articles, respectively. Confidentiality of data was reported for 14% of all studies, 18% did not report the type of respondent interviewed and 51% reported time between death and the interview for the VA. Data security was reported in 8% of all studies. Funding was declared in 63% of all studies and conflict of interest in 42%. Reporting of all these variables increased over time. Conclusions: The results of this systematic review show that although there has been an increase in ethical reporting for VA studies, there still remains a large gap in reporting.