Alveolar soft part sarcoma (ASPS) is a very rare subtype, constituting less than 0.5% of malignant Soft tissue sarcoma. It is an orphan disease affecting adolescents and young adults, predominantly females. The rarity of the disease, with its indolent but relentless natural history and enigmatic line of differentiation, makes its diagnosis a challenge. Despite being a chemoresistant disease, it is known for prolonged survival even in a few metastatic patients with spontaneous disease stabilization and indolent disease behavior. Targeted therapy with antiangiogenic agents and immunotherapy is the way forward for this rare disease. In this review, we aim to give an overview of the approach to diagnosis and management of this orphan disease in 2022 in the Indian setting, which is widely applicable in other low-middle income countries (LMIC) as well.
Long-Term Outcomes in Survivors of Childhood Cancer: A 30-Year Experience From India
Despite an increasing number of survivors of childhood cancer (CCS) in low- and middle-income countries, survivorship care is in its nascent stages. We describe the spectrum of late effects seen, challenges faced, and lessons learnt over three decades of a late effects program in India.
We describe the demographics and profile of late effects of all CCS survivors enrolled in our After Completion of Treatment Clinic from February 5, 1991 (inception) to February 4, 2021. We analyzed the trends by the decade of diagnosis.
There were 3,067 CCS survivors, the median age was 18 years (range, 3-57 years), and the median follow-up was 11 years (range, 2-46 years). Two thirds (62.4%) had either no or mild late effects, 480 (15.6%), 497 (16.2%), and 162 (5.3%) had grades 2, 3, and 4 late effects, with 67 deaths reported. Notable late effects were chronic viral hepatitis (7.8%), thyroid dysfunction (7.5%), other endocrine issues (13.6%), psychosocial issues (57%), neurocognitive impairment (4.1%), and metabolic syndrome (4%). The cumulative incidence and severity of late effects showed a consistent decline by the decade of diagnosis. Twenty-two percent of survivors are lost to follow-up.
Survivors of childhood cancer treated on contemporary treatment protocols have a significantly lower side-effect profile. Attrition to long-term follow-up and psychosocial issues are significant concerns. Understanding the unique spectrum of late effects and establishing a holistic support system go a long way in ensuring the long-term physical and mental health and psychosocial concerns of childhood cancer survivors in low- and middle-income countries.
Retrospective analysis: checkpoint inhibitor accessibility for thoracic and head and neck cancers and factors influencing it in a tertiary centre in India
Background: Access to cancer care is an issue in low and low middle-income countries. The problem is worse with respect to access to new therapies like checkpoint inhibitors. Hence, we decided to audit our practice in the head and neck and thoracic medical oncology unit from 2015 to 2019 to study the accessibility of checkpoint inhibitors and factors influencing it.
Methods: All patients who were registered in the head and neck and thoracic medical oncology unit between 2015 and 2019 were included in the study. Patients who received immunotherapy were identified from the prospective database of immunotherapy maintained by the department. We made a list of patients who were eligible for immunotherapy per year and identified how many of them received recommended immunotherapy. The indication for eligibility of immunotherapy was based on published pivotal data and it was applicable from the date of publication of the study online. Descriptive statistics were performed. For nominal and ordinal variable percentage with 95% confidence intervals (95% CI) was provided. Factors impacting the accessibility of immunotherapy were identified.
Findings: A total of 15,674 patients were identified who required immunotherapy; out of them only 444 (2.83%, 95% CI: 2.58–3.1) received it. Among head and neck cancer patients, 4.5% (156 out of 3,435) received immunotherapy versus 2.35% (288 out of 12,239) among thoracic cancer patients (p < 0.001). Among the general category (low socioeconomic), 0.29% (28 out of 9,405 ) versus 6.6% (416 out of 6,269) among the private category (high socioeconomic) received immunotherapy (p < 0.001). While 3.7% (361 out of 9,737) among males versus 1.39% (83 out of 5,937) females received immunotherapy (p < 0.001). There was also a temporal trend seen in the accessibility of immunotherapy (p < 0.001). Conclusion: The accessibility of immunotherapy is below 3% in India. Patients with head and neck cancers, those registered as private category and male patients had higher access to this therapy. There was also a temporal trend observed suggesting increased accessibility over the years.
Standards for Evaluating the Quality of Undergraduate Nursing Elearning Programme in Low- and Middle-Income Countries: A Modified Delphi Study
The lack of standards hampers the evaluation of e-learning programmes in low- and middle-income countries. Fragmented approaches to evaluation coupled with a lack of uniform criteria have been a major deterrent to the growth of e-learning. Adopting standards from high-income countries has contextual challenges in low- and middle-income countries. Holistic approaches coupled with uniform standards provide holistic information to stakeholders hence the quality of the programmes is measurable. The e-learning situation in low-and middle-income countries provided an impetus to develop and validate these standards.
A modified Delphi technique.
Fourteen experts with experience and expertise in e-learning and regulation of undergraduate nursing from fourteen countries in low-and middle-income countries participated in three rounds of the modified Delphi process. A pre-described set of standards was shared electronically for independent and blinded ratings. An 80% agreement influenced consensus decisions. The standards were modified based on experts’ comments, and two subsequent rounds were used to refine the standards and criteria.
At the end of round one, the expert consensus was to keep 67, modify 29 and remove three criteria. At the end of the second round, the consensus was to modify 28 and remove four criteria. In the third round, experts agreed that the standards were feasible, usable, and practical in LMICs. A total of six broad standards with 105 criteria were developed.
The Technological bloom permeating all spheres of society, including education is an essential component in the development of e-learning programmes. The standards are quintessential to evaluating the quality of undergraduate nursing programmes. E-learning in nursing education requires critical evaluation to ensure quality in undergraduate nursing programmes. The intricacies of the Low and middle-income context were taken into consideration in developing the standards to offer sustainable evaluation of the quality of e-learning in LMICs, and local solutions to local problems.
Measuring the burden of accidental injuries in India: a cross-sectional analysis of the National Sample Survey (2017–18)
Globally, injuries are the leading cause of premature deaths and disability and account for nearly 9 per cent of total deaths worldwide. Like other countries, India also faces a very high burden of injuries, with the second most common cause of death and disability. Annually, 0.15 million people lose their lives due to accidental injuries/road traffic accidents in India, which is 11 per cent of the accident-related death worldwide. This study aims to analyse the socio-economic and demographic differentials in the magnitude of economic burden and coping strategies associated with accidental injuries in India. The study used the nationally representative cross-sectional data on the ‘Key Indicators of Social Consumption in India: Health, (2017–18)’ of the National Sample Survey Organisation (NSSO). Simple descriptive statistics have been used to measure the incidence and intensity of accidental injuries. The economic burden is estimated through out-of-pocket (OOP) health expenditure on accidental injuries and the use of different sources of finance to cope with the same. In addition, the logistic regression analysis has been used to analyse the association between socio-economic covariates and the likelihood of suffering from accidental injuries in India. The findings reveal that, unlike outpatient care, the high incidence in inpatient care reveals that hospitalisation is inevitable in most cases after accidental injuries. Among various socio-economic variables, the incidence of accidental cases is higher among individuals residing in urban areas, males, educated persons, and economically better-off sections of society. Also, the mean monthly OOP expenditure on the accidental injuries-affected population has been estimated at INR 2672 .46 (US$ 41.06) and INR 3041.64 (US$ 47.09) in inpatient and outpatient care, respectively. Almost the same sections and the individuals who received insurance spend more OOP expenditure on accidental injuries. However, OOP expenditure as a share of total consumption expenditure (TCE) is significantly high among their counterparts, such as rural inhabitants, illiterates, scheduled castes, the very poor and those who do not have any kind of health insurance coverage. In addition to savings/income, individuals depend more on the distress sources such as borrowings and selling of household assets to meet their OOP health expenditure in India. In conclusion, the high incidence of accidental injuries threatens people more than some of the other ailments in India. A strict motor vehicle act, administrative and political determination, awareness campaigns through various media platforms, diverse road lane systems and traffic norms can help reduce accidental fatalities in the country. Reducing the economic burden of accidental injuries requires increasing public spending on healthcare services as a percentage share of the country’s GDP. Furthermore, comprehensive universal health insurance coverage for all, including each component of healthcare expenditure, is the need of the hour.
The causes of preterm neonatal deaths in India and Pakistan (PURPOSe): a prospective cohort study
Preterm birth remains the major cause of neonatal death worldwide. South Asia contributes disproportionately to deaths among preterm births worldwide, yet few population-based studies have assessed the underlying causes of deaths. Novel evaluations, including histological and bacteriological assessments of placental and fetal tissues, facilitate more precise determination of the underlying causes of preterm deaths. We sought to assess underlying and contributing causes of preterm neonatal deaths in India and Pakistan.
The project to understand and research preterm pregnancy outcomes and stillbirths in South Asia (PURPOSe) was a prospective cohort study done in three hospitals in Davangere, India, and two hospitals in Karachi, Pakistan. All pregnant females older than 14 years were screened at the time of presentation for delivery, and those with an expected or known preterm birth, defined as less than 37 weeks of gestation, were enrolled. Liveborn neonates with a weight of 1000 g or more who died by 28 days after birth were included in analyses. Placentas were collected and histologically evaluated. In addition, among all neonatal deaths, with consent, minimally invasive tissue sampling was performed for histological analyses. PCR testing was performed to assess microbial pathogens in the placental, blood, and fetal tissues collected. An independent panel reviewed available data, including clinical description of the case and all clinical maternal, fetal, and placental findings, and results of PCR bacteriological investigation and minimally invasive tissue sampling histology, from all eligible preterm neonates to determine the primary and contributing maternal, placental, and neonatal causes of death.
Between July 1, 2018, and March 26, 2020, of the 3470 preterm neonates enrolled, 804 (23%) died by 28 days after birth, and, of those, 615 were eligible and had their cases reviewed by the panel. Primary maternal causes of neonatal death were hypertensive disease (204 [33%] of 615 cases), followed by maternal complication of pregnancy (76 [12%]) and preterm labour (76 [11%]), whereas the primary placental causes were maternal and fetal vascular malperfusion (172 [28%] of 615) and chorioamnionitis, funisitis, or both (149 [26%]). The primary neonatal cause of death was intrauterine hypoxia (212 [34%] of 615) followed by congenital infections (126 [20%]), neonatal infections (122 [20%]), and respiratory distress syndrome (126 [20%]).
In south Asia, intrauterine hypoxia and congenital infections were the major causes of neonatal death among preterm babies. Maternal hypertensive disorders and placental disorders, especially maternal and fetal vascular malperfusion and placental abruption, substantially contributed to these deaths.
Use of antenatal and delivery care services and their association with maternal and infant mortality in rural India
Optimum use of antenatal care (ANC) and delivery care services could reduce morbidity and mortality among prospective mothers and their children. However, the role of ANC and delivery services in prevention of both maternal and child mortality is poorly understood, primarily because of dearth of prospective cohort data. Using a ten-years population-based prospective cohort data, this study examined the use of ANC and delivery services and their association with maternal and infant mortality in rural India. Descriptive statistics were estimated, and multivariable logistic regression modelling was used to attain the study objective. Findings revealed that consumption of ≥ 100 iron-and-folic acid (IFA) tablet/equivalent syrup during pregnancy had a protective association with maternal and infant mortality. Lack of maternal blood group checks during pregnancy was associated with increased odds of the death of infants. Caesarean/forceps delivery and delivery conducted by untrained personnel were associated with increased odds of maternal mortality. Findings from this study reemphasizes on increasing coverage and consumption of IFA tablets/equivalent syrup. Improved ANC and delivery services and increased uptake of all types of ANC and delivery care services are equally important for improvement in maternal and child survival in rural India.
A Pre-experimental Study to Assess the Effectiveness of Planned Teaching Program on Knowledge and Expressed Practices Regarding Selected Obstetrical Emergencies Among Staff Nurses in Selected Hospitals of Shimla District, Himachal Pradesh
Background and objective
Good health and well-being occupy the third position among 17 sustainable development goals designed by the United Nations. The key to reducing maternal and newborn morbidity and mortality is competent and skilled birth attendance. The objectives of this study were to assess and compare the pre-test and post-test knowledge and expressed practices regarding selected obstetrical emergencies among staff nurses; to develop and determine the effectiveness of planned teaching programs on selected obstetrical emergencies among staff nurses; and to find out the correlation between knowledge and expressed practices regarding selected obstetrical emergencies.
Materials and methods
A pre-experimental study was conducted for a period of one month in 2019 among 60 staff nurses in selected hospitals through a validated tool/questionnaire, which was piloted on six staff nurses prior to starting the study. Data were collected using a structured knowledge questionnaire and expressed practices checklist.
Of note, 70% of participants had General Nursing and Midwifery (GNM) as a professional qualification. The majority (51.7%) had one to five years of work experience; 46.7% of staff nurses had good knowledge in the pre-test assessment and 95% had good knowledge in the post-test evaluation. Significantly, 80% showed good expressed practices in the pre-test and 96.7% revealed good expressed practices in the post-test regarding selected obstetrical emergencies. In the pre-test, there was a significant association between the sociodemographic variables (age and work experience) with expressed practices, while that was not the case with post-test expressed practices. No significant association was found between pre- and post-test knowledge and selected demographic variables. There was a significant difference between pre-test and post-test knowledge and expressed practices score (mean pre- and post-test knowledge score: 18.82 vs. 25.43, p<0.001; mean pre- and post-test expressed practices score: 14.43 vs. 16.30, p<0.001).
Based on our findings, the planned teaching program is effective in improving the knowledge and expressed practices of staff nurses regarding selected obstetrical emergencies.
Trends and Determinants of the Use of Episiotomy in a Prospective Population-Based Registry from Central India
Background: Findings from research and recommendations from the World Health Organization favors restrictive use of episiotomy, but whether this guidance is being followed in India and factors associated with its use are not known.
Methods: We conducted a secondary analysis of data collected by the Maternal Newborn Health Registry, a prospective population-based pregnancy registry established in Central India (Nagpur, Eastern Maharashtra). We examined mode of delivery and use of episiotomy in vaginal deliveries from 2014 to 2018, as well as maternal and birth characteristics, health systems factors, and concurrent obstetric interventions associations with its use with multivariable Poisson regression models.
Results: During the five-year interval, the rate of episiotomy in vaginal birth rose from 13% to 31% despite a decline in assisted vaginal delivery. In the adjusted analysis prior birth, multiple gestations, seven or more years of maternal education, higher gestational age, higher birthweight, delivery by an obstetrician (as compared to midwife or general physician), and birth in hospital (as compared to clinic or health center) were associated with episiotomy. After adjusting for these factors, year over year rise in episiotomy was significant with an adjusted incidence rate ratio (AIRR) of 1.10 [95% confidence interval (CI) 1.08-1.13; p=0.018]. We found an association between episiotomy and several other obstetrics interventions, with the strongest relationship for maternal treatment with antibiotics (AIRR 4.31, 95% CI 3.17 – 5.87; p=0.003).
Conclusions: Episiotomy in this population-based sample from central India steadily rose from 2014 to 2018. This increase over time was observed even after adjusting for patient characteristics, obstetric risk factors, and health system features, such as specialty of the delivery provider. Our findings have important implications for maternal-child health and respectful maternity care given that most women prefer to avoid episiotomy; they also highlight a potential target for antibiotic stewardship as part of global efforts to combat antimicrobial resistance.
Trial Registration: The trial was registered at ClinicalTrials.gov under reference number NCT01073475.
Cancer Medicines: What Is Essential and Affordable in India?
PURPOSE The WHO essential medicines list (EML) guides selection of drugs for national formularies. Here, we evaluate which medicines are considered highest priority by Indian oncologists and the extent to which they are
available in routine practice. METHODS This is a secondary analysis of an electronic survey developed by the WHO EML Cancer Medicine Working Group. The survey was distributed globally using a hierarchical snowball method to physicians who prescribe systemic anticancer therapy. The survey captured the 10 medicines oncologists considered highest priority for population health and their availability in routine practice.
RESULTS The global study cohort included 948 respondents from 82 countries; 98 were from India and 67 were from other low- and middle-income countries. Compared with other low- and middle-income countries, the Indian cohort was more likely to be medical oncologist (70% v 31%, P , .001) and work exclusively in the private health system (52% v 17%, P , .001). 14/20 most commonly selected medicines were conventional
cytotoxic drugs. Universal access to these medicines was reported by a minority of oncologists; risks of significant out-of-pocket expenditures for each medicine were reported by 19%-58% of oncologists. Risk of catastrophic expenditure was reported by 58%-67% of oncologists for rituximab and trastuzumab. Risks of financial toxicity were substantially higher within the private health system compared with the public system.
CONCLUSION Most high-priority cancer medicines identified by Indian oncologists are generic chemotherapy agents that provide substantial improvements in survival and are already included in WHO EML. Access to these
treatments remains limited by major financial burdens experienced by patients. This is particularly acute within the private health system. Strategies are urgently needed to ensure that high-quality cancer care is affordable and accessible to all patients in India