Patient and caregiver perspectives of select non-communicable diseases in India: A scoping review.

BACKGROUND AND OBJECTIVES: Patient-reported measures of encounters in healthcare settings and consideration of their preferences could provide valuable inputs to improve healthcare quality. Although there are increasing reports of user experiences regarding health care in India in recent times, there is a lack of evidence from Indian healthcare settings on the care provided for patients with chronic diseases. METHODS: We selected diabetes mellitus and cancer as representatives of two common conditions requiring different care pathways. We conducted a scoping review of studies reporting experiences or preferences of patients/caregivers for these conditions, in PubMed, Global Index Medicus and grey literature, from the year 2000 onwards. Both published and emergent themes were derived from the data and summarised as a narrative synthesis. RESULTS: Of 95 included studies (49 diabetes, 46 cancer), 73% (65) were exclusively quantitative surveys, 79% included only patients (75), and 59.5% (44) were conducted in government centres. Studies were concentrated in a few states in India, with the underrepresentation of vulnerable population groups and representative studies. There was a lack of standardised tools and comprehensive approaches for assessing experiences and preferences of patients and caregivers, concerning diabetes and cancers in India. The commonest type of care assessed was therapeutic (74), with 14 cancer studies on diagnosis and nine on palliative care. Repeated visits to crowded centres, drug refill issues, unavailability of specific services in government facilities, and expensive private care characterised diabetes care, while cancer care involved delayed diagnosis and treatment, communication, and pain management issues. CONCLUSIONS: There is a need for robust approaches and standardised tools to measure responsiveness of the healthcare system to patient needs, across geographical and population subgroups in India. Health system reforms are needed to improve access to high-quality care for treatment and palliation of cancer and management of chronic diseases such as diabetes.

An analysis of government-sponsored health insurance enrolment and claims data from Meghalaya: Insights into the provision of health care in North East India.

INTRODUCTION: The Megha Health Insurance Scheme (MHIS) was launched in 2013 in the North-East Indian state of Meghalaya to reduce household out-of-pocket expenditure on health and provide access to high-quality essential healthcare. Despite substantial expansion of the MHIS since the scheme's inception, there is a lack of comprehensive documentation and evaluation of the scheme's performance against its Universal Health Care (UHC) objectives. METHODS: We analysed six years of enrolment and claims data (2013-2018) covering three phases of the scheme to understand the pattern of enrolment, utilisation and care provision under the MHIS during this period. De-identified data files included information on age, sex, district of residence, the district of provider hospital, type of hospital, date of admission, status at discharge, claimed category of care, package codes, and amount claimed. Descriptive statistics were generated to investigate key trends in enrolment, service utilisation, and Government health spending under the MHIS. RESULTS: Approximately 55% of the eligible population are currently enrolled in MHIS. Enrolment increased consistently from phase I through III and remained broadly stable across districts, gender, age group and occupation categories, with a small decline in males 19-60 years. Claims were disproportionately skewed towards private provision; 57% of all claims accrued to the 18 empanelled private hospitals and 39% to the 159 public sector facilities. The package 'General Ward Unspecified' was responsible for the highest volume of claims and highest financial dispensation across all three phases of the scheme. This likely indicates substantial administrative error and is potentially masking both true burden of disease and accurate financial provision for care under the MHIS. Anti-rabies injections for dog/cat bite contributed to 11% of total claims under MHIS III, and 1.6% of all claims under MHIS II. This warrants investigation to better understand the burden of animal bites on the Meghalayan population and inform the implementation of cost-effective strategies to reduce this burden. CONCLUSIONS: This paper describes the first analysis of health insurance enrolment and claims data in the state of Meghalaya. The analysis has generated an important evidence base to inform future MHIS enrolment and care provision policies as the scheme expands to provide Universal Health Coverage to the state's entire population.

Risk factors associated with gall bladder cancer in high incidence areas in India: a systematic review protocol.

INTRODUCTION: Gall bladder cancer (GBC) is a lethal form of malignancy of the gastrointestinal tract with a unique geographical distribution. Cases are aggregated in the river basins of Ganga-Brahmaputra, in the north, east and north-east India, collectively termed as the 'high-risk' zone for GBC. Although some studies report high prevalence of typhoid infection linking with high burden of GBC in these regions, there is no systematic review of the factors associated with GBC in the high incidence areas. To address this gap, we are conducting a systematic review to identify and organise the factors associated with GBC in the high-risk zone of India. METHODS AND ANALYSIS: A systematic review of all observational studies that report a quantitative relationship between at least one risk factor for GBC among adults (>18 years) in the high-risk zone in India will be conducted. The databases PubMed-MEDLINE, CINAHL, EMBASE, Web of Science, Scopus, OpenGrey and Google Scholar published in English and after 1990 will be searched. This review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses recommendations. The primary outcome is GBC. If data permit, meta-analysis will be performed. Two independent reviewers will independently screen the articles, extract the data and assess the methodological quality of the studies. ETHICS AND DISSEMINATION: As this will be a systematic review without human participants' involvement, there will be no requirement for ethics approval. Findings will be disseminated widely through peer-reviewed publication and media, for example, conferences and symposia. PROSPERO REGISTRATION NUMBER: CRD42021256673.

A case-control study identifying the characteristics of patients providing incorrect contact information at registration for DOTS in Pune, India.

BACKGROUND: Provision of incorrect contact information by the patient at the time of registration for treatment is a deterrent to treatment adherence. OBJECTIVE: To determine the characteristics of patients providing incomplete contact information at the time of registration for Directly Observed Treatment Short course (DOTS) at the tuberculosis units (TUs) in Pune, India. METHODS: A nested case-control study was conducted where the characteristics of patients who had provided incorrect contact information (cases) were compared with the characteristics of patients who could be traced (controls). Cases and controls were identified from a cohort of 3802 tuberculosis patients registered at the DOTS centres in Pune. Correct or incorrect contact information was ascertained by visiting each address provided at the time of registration. Characteristics associated with providing incorrect contact information were determined through multinomial regression analysis. RESULTS: There were 406 (10.7%) patients who could not be traced due to incorrect address provided at the time of registration at the DOTS centres. Registration at the TUs in the peripheral areas of the city (odds ratio (OR)=3.57, 95% confidence interval (CI)=2.64-4.84) and engagement in migration prone occupation (OR=1.83, 95% CI=1.47-2.26) were associated with odds of providing incorrect information at the time of registration. CONCLUSION: Untraceable patients were more likely to be engaged in occupations with a potential for migration. DOTS centres located in developing areas of cities should reinforce validation of contact information of patients.