Application of Rupantaran software to Sri Lankan hospitals: an innovative tool developed to merge population-based cancer registry data into CanReg5.

The purpose of a population-based cancer registry is to provide information on the disease burden for cancer control planning and is essential in studies on assessing the effectiveness of prevention, early detection, screening and cancer care interventions, where implemented. Sri Lanka is one of the Member States of the World Health Organisation's South-East Asia Region and receives technical support for cancer registration from the International Agency for Research on Cancer (IARC), and the IARC Regional Hub based at the Tata Memorial Centre in Mumbai, India. For data management of cancer registry records, Sri Lanka National Cancer Registry (SLNCR) uses the open-source registry software tool, CanReg5, as developed by IARC. The SLNCR has received data from 25 centres located across the country. Inputted data from the respective centres was then exported from various CanReg5 systems to the main centre in Colombo. As the import to the central CanReg5 system held in the capital is manual, the records were manually modified to avoid any duplicate entries, and the quality of data was compromised. To overcome this issue, a new software tool, Rupantaran, has been created and developed by IARC Regional Hub, Mumbai to help merge the records from different centres. Rupantaran was tested and implemented successfully at the SLNCR with 47,402 merged records. The Rupantaran software has proven beneficial in maintaining the quality of cancer registry data by avoiding manual errors, thus enabling rapid analysis and dissemination, a limiting factor previously.

Epidemiology of rare cancers in India and South Asian countries - remembering the forgotten.

Background: Rare cancers (RCs) are challenging to manage and are "forgotten cancers" though they collectively constitute a significant proportion of all cancers (∼20%). As a first step towards streamlining care, there is an unmet need to map the epidemiology of RCs in South Asian Association for Regional Collaboration (SAARC) countries. Methods: The authors collected data from 30 Population-Based Cancer Registries (PBCR) of India and the published national registries of Nepal, Bhutan and Sri Lanka (SL) and compared them with the standard RARECAREnet RC list. Findings: With the standard definition of crude incidence rates (CR) ≤6/100,0000 per population, 67.5%, 68.3%, 62.3% and 37% of all incident cancers qualify as RCs in India, Bhutan, Nepal and SL, respectively. An arbitrary cut-off CR ≤3 appears more appropriate with 43%, 39.5%, 51.8% and 17.2% of cancers identified as RCs, respectively, due to the lower cancer incidence.There are similarities and notable differences between the RC lists of the SAARC region with that of the European RC list. Oral cavity cancers are rare in Europe, while pancreas, rectum, urinary bladder and melanomas are common. In addition, uterine, colon and prostatic cancers are rare in India, Nepal and Bhutan. In SL, thyroid cancer is common. There are gender-related and regional differences in RC trends in the SAARC countries. Interpretation: There is an unmet need in SAARC nations to capture epidemiological nuances in rare cancers. Understanding the unique issues in the developing world may guide policymakers to adopt appropriate measures to improve RC care and tailor public health interventions. Funding: None.

Quantification of impact of COVID-19 pandemic on cancer screening programmes - a case study from Argentina, Bangladesh, Colombia, Morocco, Sri Lanka, and Thailand.

It is quite well documented that the COVID-19 pandemic disrupted cancer screening services in all countries, irrespective of their resources and healthcare settings. While quantitative estimates on reduction in volume of screening tests or diagnostic evaluation are readily available from the high-income countries, very little data are available from the low- and middle-income countries (LMICs). From the CanScreen5 global cancer screening data repository we identified six LMICs through purposive sampling based on the availability of cancer screening data at least for the years 2019 and 2020. These countries represented those in high human development index (HDI) categories (Argentina, Colombia, Sri Lanka, and Thailand) and medium HDI categories (Bangladesh and Morocco). No data were available from low HDI countries to perform similar analysis. The reduction in the volume of tests in 2020 compared to the previous year ranged from 14.1% in Bangladesh to 72.9% in Argentina (regional programme) for cervical screening, from 14.2% in Bangladesh to 49.4% in Morocco for breast cancer screening and 30.7% in Thailand for colorectal cancer screening. Number of colposcopies was reduced in 2020 compared to previous year by 88.9% in Argentina, 38.2% in Colombia, 27.4% in Bangladesh, and 52.2% in Morocco. The reduction in detection rates of CIN 2 or worse lesions ranged from 20.7% in Morocco to 45.4% in Argentina. Reduction of breast cancer detection by 19.1% was reported from Morocco. No association of the impact of pandemic could be seen with HDI categories. Quantifying the impact of service disruptions in screening and diagnostic tests will allow the programmes to strategize how to ramp up services to clear the backlogs in screening and more crucially in further evaluation of screen positives. The data can be used to estimate the impact on stage distribution and avoidable mortality from these common cancers.

Impact on psychiatrists in intellectual disability of Court of Protection orders for section 49 (Mental Capacity Act) reports: online survey.

AIMS AND METHOD: To gain an understanding of court orders for reports under section 49 of the Mental Capacity Act 2005 in terms of the incidence, topics instructed, time taken, impact on working practice and well-being, and support available to psychiatrists. We used Microsoft Forms to generate an online survey. Domains within the survey included demographics, number of reports, support, clinical impact and personal well-being. RESULTS: Of the 104 psychiatrists who responded, 65.4% had been ordered to undertake a section 49 report; 51.5% of those had been asked to provide an opinion outside their subjective expertise, 25% were somewhat or fully confident in writing reports and 85% stated that they experienced stress as a result. CLINICAL IMPLICATIONS: There is a need for national and local regulation of the process of ordering reports under section 49, and for psychiatrists to be trained and supported by their employers.

Knowledge, attitudes and self-perceived competencies on palliative care among medical officers at National Cancer Institute, Sri Lanka.

Introduction: Though palliative care is an essential component in the continuum of cancer care, it is still at an evolving phase in Sri Lanka. Objective: To identify knowledge, attitude, self-perceived competencies in practicing palliative care and factors associated among medical officers in National Cancer Institute, Sri Lanka. Methods: A descriptive cross sectional study was conducted among doctors in National Cancer Institute in 2020/21 using self-administered questionnaire to assess knowledge, attitudes and self-perceived competencies on palliative care. Doctors worked less than 3 months and directly not involved in patient care were excluded. Scoring systems were used to assess knowledge, attitudes and self-perceived competencies. A descriptive analysis of data was done using SPSS 21 using median scores, frequencies and chi- square test. Ethical clearance was taken from the Ethical Review Committee, Faculty of Medicine, University of Colombo. Results: Out of 120 doctors included in the study, 83 (69.3%) were females and 37 (30.7%) were males. Majority 101(84.2%) were Sinhalese. Sixty (60%) were 31-40 years. Eleven (9.2%) had training in service. Five (4.2%) had a percentage score for knowledge ≤50 while 57 (47.5%) had > 75. Only 3 (2.5%) had a percentage score for attitudes of 51-75 while 116 (96.7%) had > 75. For competency level 57 (47.5%) had percentage score ≤50 while 23 (19.2%) had > 75. Ethnicity, age, work experience, receiving undergraduate training were not significantly associated with knowledge, attitudes and practices (p > .05). Conclusion: Though level of knowledge and attitudes were high, self -perceived competencies were low which highlights the need of training in palliative care. Eg: undergraduate curricular and in-service.

The Emergence of Breast Care Nursing in A Developing Nation: A Sri Lankan-Australian Training Partnership.

OBJECTIVE: In Sri Lanka, the incidence of breast cancer is increasing. Yet, Sri Lankan nurses have limited specialist education opportunities and no formal recognition of the breast care nurse (BCN) role to address this growing need. This project aimed to encourage the emergence of the BCN role in Sri Lanka by delivering a workshop for nurses to increase the knowledge and confidence in delivering breast cancer care. METHODS: This project was initiated by Zonta, a nonprofit, service organization, in collaboration with the National Cancer Control Programme of the Ministry of Health, Nutrition and Indigenous Medicine, Sri Lanka. A 2-day intensive workshop was designed by a collaborative team of Australian and Sri Lankan health professionals and delivered in Colombo. Its effectiveness was evaluated by measuring the knowledge about breast cancer, confidence with clinical care, and satisfaction with the workshop. RESULTS: Fifty nursing participants attended the workshop. Outcomes included a statistically significant increase in knowledge about breast cancer (P = 0.012) and confidence in clinical care (P < 0.003 for all aspects of confidence). All participants were highly satisfied with the workshop, agreeing that the content was relevant and that they developed new skills. CONCLUSIONS: Nurses in Sri Lanka have unmet needs for specialty training and education. A 2-day workshop can improve knowledge and confidence, with the potential to improve patient care and increase the recognition of the BCN role. Lessons learnt from the collaboration between the nongovernment and government partners provide a model for the development of specialist nursing education.

Access to pain relief and essential opioids in the WHO South-East Asia Region: challenges in implementing drug reforms.

It is a justifiable assumption that more than 15 million people in the World Health Organization South-East Asia Region are experiencing serious health-related suffering, much of it caused by persistent, severe pain. Despite this burden of suffering, overall access to pain relief and palliative care services is abysmal. The lack of access to controlled drugs for pain management is striking: the average morphine equivalence in the region in 2015 was just 1.7 mg per capita, while the global average was 61.5 mg per capita. Until recently, implementation of national legislation to facilitate medical and scientific use of opioids has proven to be very complex and difficult to achieve. The effects on the region of the exploitative British opium trade in previous centuries prompted countries to adopt draconian legislation on opioids, focused on restricting illicit use. In India, the Narcotic Drugs and Psychotropic Substances Act of 1985, for example, stipulated harsh custodial sentences for even minor clerical errors in hospitals stocking opioids. Decades of persistent efforts by civil society resulted in the landmark amendment of the Act in 2014 to improve medical access, but implementation remains highly protracted. Although some progress has been made in recent years in Bangladesh, India, Nepal, Sri Lanka and Thailand, pain is a symptom that is grossly undertreated in most parts of the region. On both human rights and public health grounds, there is an urgent need for well-formulated drug policies to increase access to opioid medications, coupled with capacity-building and comprehensive public health systems incorporating palliative care.

Strengthen Cancer Surveillance in Sri Lanka by Implementing Cancer Registry Informatics to Enhance Cancer Registry Data Accuracy, Completeness, and Timeliness.

Cancer surveillance is a process of systematic, continuous collection, storage, analysis, interpretation and dissemination of epidemiological information on cancer cases occurring in a particular geographic area. The process of cancer surveillance is also called 'cancer registration'. A system to conduct cancer registration is called 'cancer registry'. The purpose of the project is to implement cancer registry informatics to enhance electronic cancer registry reporting activities that take advantage of emerging health information technology. The expected function of the application is to strengthen the cancer registry data accuracy, completeness, and timeliness. The goals to be achieved are: determine the incidence of cancers with respect to geographic, demographic characteristics; monitor trends and patterns of cancer incidences over time; identify high-risk populations; provide data for epidemiological studies and prioritize health resource allocations.

Quality in the provision of headache care. 1: systematic review of the literature and commentary.

Widely accepted quality indicators for headache care would provide a basis not only for assessment of care but also, and more importantly, for its improvement. The objective of the study was to identify and summarize existing information on such indicators: specifically, did indicators exist, how had they been developed, what aspects of headache care did they relate to and how and with what utility were they being used? A systematic review of the medical literature was performed. A total of 32 articles met criteria for inclusion. We identified 55 existing headache quality indicators of which 37 evaluated processes of headache care. Most were relevant only to specific populations of patients and to care delivered in high-resource settings. Indicators had been used to describe overall quality of headache care at a national level, but not systematically applied to the evaluation and improvement of headache services in other settings. Some studies had evaluated the use of existing disability and quality of life instruments, but their findings had not been incorporated into quality indicators. Existing headache care quality indicators are incomplete and inadequate for purpose. They emphasize processes of care rather than structure or outcomes, and are not widely applicable to different levels and locations of headache care. Furthermore, they do not fully incorporate accepted evidence regarding optimal methods of care. There is a clear need for consensus-based indicators that fully reflect patients' and public-health priorities. Ideally, these will be valid across cultures and health-care settings.

Quality in the provision of headache care. 2: defining quality and its indicators.

The objective of this study was to define "quality" of headache care, and develop indicators that are applicable in different settings and cultures and to all types of headache. No definition of quality of headache care has been formulated. Two sets of quality indicators, proposed in the US and UK, are limited to their localities and/or specific to migraine and their development received no input from people with headache. We first undertook a literature review. Then we conducted a series of focus-group consultations with key stakeholders (doctors, nurses and patients) in headache care. From the findings we proposed a large number of putative quality indicators, and refined these and reduced their number in consultations with larger international groups of stakeholder representatives. We formulated a definition of quality from the quality indicators. Five main themes were identified: (1) headache services; (2) health professionals; (3) patients; (4) financial resources; (5) political agenda and legislation. An initial list of 160 putative quality indicators in 14 domains was reduced to 30 indicators in 9 domains. These gave rise to the following multidimensional definition of quality of headache care: "Good-quality headache care achieves accurate diagnosis and individualized management, has appropriate referral pathways, educates patients about their headaches and their management, is convenient and comfortable, satisfies patients, is efficient and equitable, assesses outcomes and is safe." Quality in headache care is multidimensional and resides in nine essential domains that are of equal importance. The indicators are currently being tested for feasibility of use in clinical settings.