Voices of care: unveiling patient journeys in primary care for hypertension and diabetes management in Kerala, India.

Background: Diabetes and hypertension are leading public health problems, particularly affecting low- and middle-income countries, with considerable variations in the care continuum between different age, socio-economic, and rural and urban groups. In this qualitative study, examining the factors affecting access to healthcare in Kerala, we aim to explore the healthcare-seeking pathways of people living with diabetes and hypertension. Methods: We conducted 20 semi-structured interviews and one focus group discussion (FGD) on a purposive sample of people living with diabetes and hypertension. Participants were recruited at four primary care facilities in Malappuram district of Kerala. Interviews were transcribed and analyzed deductively and inductively using thematic analysis underpinned by Levesque et al.'s framework. Results: The patient journey in managing diabetes and hypertension is complex, involving multiple entry and exit points within the healthcare system. Patients did not perceive Primary Health Centres (PHCs) as their initial points of access to healthcare, despite recognizing their value for specific services. Numerous social, cultural, economic, and health system determinants underpinned access to healthcare. These included limited patient knowledge of their condition, self-medication practices, lack of trust/support, high out-of-pocket expenditure, unavailability of medicines, physical distance to health facilities, and attitude of healthcare providers. Conclusion: The study underscores the need to improve access to timely diagnosis, treatment, and ongoing care for diabetes and hypertension at the lower level of the healthcare system. Currently, primary healthcare services do not align with the "felt needs" of the community. Practical recommendations to address the social, cultural, economic, and health system determinants include enabling and empowering people with diabetes and hypertension and their families to engage in self-management, improving existing health information systems, ensuring the availability of diagnostics and first-line drug therapy for diabetes and hypertension, and encouraging the use of single-pill combination (SPC) medications to reduce pill burden. Ensuring equitable access to drugs may improve hypertension and diabetes control in most disadvantaged groups. Furthermore, a more comprehensive approach to healthcare policy that recognizes the interconnectedness of non-communicable diseases (NCDs) and their social determinants is essential.

Real-Life Disability-Adjusted Life Years (DALY) Capture the Disability of Epilepsy Better from an Individual's Perspective.

Background and Objective: For 1.3 billion population in India, there are only scarce reports on disability of epilepsy using disability-adjusted life year (DALY) as a measure. Our objective was to estimate DALY using real-life data over a period of time for a cohort of people with epilepsy (PWE) admitted to an Epilepsy Monitoring Unit (EMU) of a tertiary care epilepsy center. Materials and Methods: : We ascertained survival status as on December 31, 2016 of all eligible admissions to the EMU between 01/01/2005 and 12/31/2015. We examined the medical records of randomly selected 200 of the 1970 survivors and all the expired PWE (n = 40) for clinical characteristics. The cumulative real-life DALY (cr-DALY) for individual was calculated as the sum of the years lost to disability (YLD) and the years of life lost (YLL). Annual population-based DALY (p-DALY) was estimated from the cr-DALY, total patient-years of follow-up, and regional population prevalence. Results: The cr-DALY per PWE was 17.63 (generalized seizures only). The cr-DALY increased by 23.7% when all seizure types were considered (23.12). PWE with epilepsy onset <10 years of age, focal epilepsy (particularly, extratemporal lobe epilepsy), and premature death had significantly higher cr-DALY. Those who underwent surgery for epilepsy or achieved remission had significantly lower cr-DALY. The computed p-DALY was 583/1,00,000 population (generalized epilepsy contributed 165/1,00,000 population; focal epilepsy contributed 418/1,00,000 population). Conclusion: Our study had identified, for the first time, several determinants that reduced DALY significantly. Real-life DALY, rather than prevalence-based DALY, captures the cumulative disability of affected individuals. Epilepsy leads to loss of 23 years of disability-adjusted life span for the affected person. This can be extrapolated to substantial economic benefits.

Preparedness of primary and secondary health facilities in India to address major noncommunicable diseases: results of a National Noncommunicable Disease Monitoring Survey (NNMS).

BACKGROUND: The monitoring framework for evaluating health system response to noncommunicable diseases (NCDs) include indicators to assess availability of affordable basic technologies and essential medicines to treat them in both public and private primary care facilities. The Government of India launched the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS) in 2010 to strengthen health systems. We assessed availability of trained human resources, essential medicines and technologies for diabetes, cardiovascular and chronic respiratory diseases as one of the components of the National Noncommunicable Disease Monitoring Survey (NNMS - 2017-18). METHODS: NNMS was a cross-sectional survey. Health facility survey component covered three public [Primary health centre (PHC), Community health centre (CHC) and District hospital (DH)] and one private primary in each of the 600 primary sampling units (PSUs) selected by stratified multistage random sampling to be nationally representative. Survey teams interviewed medical officers, laboratory technicians, and pharmacists using an adapted World Health Organization (WHO) - Service Availability and Readiness Assessment (SARA) tool on handhelds with Open Data Kit (ODK) technology. List of essential medicines and technology was according to WHO - Package of Essential Medicines and Technologies for NCDs (PEN) and NPCDCS guidelines for primary and secondary facilities, respectively. Availability was defined as reported to be generally available within facility premises. RESULTS: Total of 537 public and 512 private primary facilities, 386 CHCs and 334 DHs across India were covered. NPCDCS was being implemented in 72.8% of CHCs and 86.8% of DHs. All essential technologies and medicines available to manage three NCDs in primary care varied between 1.1% (95% CI; 0.3-3.3) in rural public to 9.0% (95% CI; 6.2-13.0) in urban private facilities. In NPCDCS implementing districts, 0.4% of CHCs and 14.5% of the DHs were fully equipped. DHs were well staffed, CHCs had deficits in physiotherapist and specialist positions, whereas PHCs reported shortage of nurse-midwives and health assistants. Training under NPCDCS was uniformly poor across all facilities. CONCLUSION: Both private and public primary care facilities and public secondary facilities are currently not adequately prepared to comprehensively address the burden of NCDs in India.

Changing household dietary behaviours through community-based networks: A pragmatic cluster randomized controlled trial in rural Kerala, India.

TRIAL DESIGN: With the rise in prevalence of non-communicable diseases in India and Kerala in particular, efforts to develop lifestyle interventions have increased. However, contextualised interventions are limited. We developed and implemented contextualised behavioural intervention strategies focusing on household dietary behaviours in selected rural areas in Kerala and conducted a community-based pragmatic cluster randomized controlled trial to assess its effectiveness to increase the intake of fruits and vegetables at individual level, and the procurement of fruits and vegetables at the household level and reduce the consumption of salt, sugar and oil at the household level. METHODS: Six out of 22 administrative units in the northern part of Thiruvananthapuram district of Kerala state were selected as geographic boundaries and randomized to either intervention or control arms. Stratified sampling was carried out and 30 clusters comprising 6-11 households were selected in each arm. A cluster was defined as a neighbourhood group functioning in rural areas under a state-sponsored community-based network (Kudumbasree). We screened 1237 households and recruited 479 (intervention: 240; control: 239) households and individuals (male or female aged 25-45 years) across the 60 clusters. 471 households and individuals completed the intervention and end-line survey and one was excluded due to pregnancy. Interventions were delivered for a period of one-year at household level at 0, 6, and 12 months, including counselling sessions, telephonic reminders, home visits and general awareness sessions through the respective neighbourhood groups in the intervention arm. Households in the control arm received general dietary information leaflets. Data from 478 households (239 in each arm) were included in the intention-to-treat analysis, with the household as the unit of analysis. RESULTS: There was significant, modest increase in fruit intake from baseline in the intervention arm (12.5%); but no significant impact of the intervention on vegetable intake over the control arm. There was a significant increase in vegetable procurement in the intervention arm compared to the control arm with the actual effect size showing an overall increase by19%; 34% of all households in the intervention arm had increased their procurement by at least 20%, compared to 17% in the control arm. Monthly household consumption of salt, sugar and oil was greatly reduced in the intervention arm compared to the control arm with the actual effect sizes showing an overall reduction by 45%, 40% and 48% respectively. CONCLUSIONS: The intervention enabled significant reduction in salt, sugar and oil consumption and improvement in fruit and vegetable procurement at the household level in the intervention arm. However, there was a disconnect between the demonstrated increase in FV procurement and the lack of increase in FV intake. We need to explore fruit and vegetable intake behaviour further to identify strategies or components that would have made a difference. We can take forward the lessons learned from this study to improve our understanding of human dietary behaviour and how that can be changed to improve health within this context.

Safe delivery care practices in western Nepal: Does women's autonomy influence the utilization of skilled care at birth?

Despite various efforts to increase the utilization of skilled birth attendants (SBA), nearly two-thirds of deliveries take place at home without the assistance of SBAs in Nepal. We hypothesized that the ability of women to take decisions about their own lives-women's autonomy-plays an important part in birth choices. To know this, we conducted a community-based cross-sectional study for assessing women's autonomy and utilization of safe delivery care service in Kapilvastu district of Nepal from June to October 2014. We used multivariate modeling to associate socioeconomic factors and women's autonomy with the utilization of safe delivery care services. Just over one-third of women sought institutional delivery care during the birth of their last child. Out of the total deliveries at health facilities, nearly 58% women visited health facility for self-reported emergency obstructive care. Only 6.2% home deliveries were handled by health workers and 14.7% women used the safe delivery kit for home delivery care. Higher levels of women's education had a strong positive association (odds ratio = 24.11, CI = 9.43-61.64) with institutional delivery care. Stratified analysis showed that when the husband is educated, women's education seems to work partly through their autonomy in decision making. Educational status of women emerged as one of the key predictors of the utilization of delivery care services in Kapilvastu district. Economic status of household and husband's education are other dominant predictors of the utilization of safe delivery care services. Improving the economic and educational status may be the way out for improving the proportion of institutional deliveries. Women's autonomy may be an important mediating factor in this pathway.

Post-stroke Fatigue is an Independent Predictor of Post-stroke Disability and Burden of Care: A Path analysis Study.

UNLABELLED: Post-stroke fatigue (PSF) is a common and one of the most distressing symptoms in stroke survivors. However, little is known about the relationship between severity of fatigue and the overall impact it has on post-stroke disability and burden of care. We aimed to examine the role of PSF in post-stroke disability and burden of care among stroke survivors after their first-ever stroke. METHODS: We prospectively recruited 163 subjects (35 females) from patients examined consecutively in a tertiary stroke care center in India, after their first-ever ischemic or hemorrhagic stroke (>3 months after event). In addition to demographic and clinical characteristics, the following assessments were done - SF-36 vitality domain (fatigue), Modified Rankin Scale (functional recovery), Hospital anxiety and depression scale (depression), Functional independence measure (disability and burden of care). We used path analysis to identify a model that will capture the interactions of fatigue, depression, and degree of functional recovery in stroke survivors. RESULTS: The severity of PSF positively correlated with the severity of disability and PSF had significant contribution to disability over and above functional recovery and depression, with all three factors accounting for 43% of the variance. Among the four models that were proposed to explore these relationships, the best fitting model showed that the effect of PSF is mediated through both the direct effect of fatigue on disability and through its interaction with depression, which remained a separate contributor to post-stroke disability and burden of care. CONCLUSIONS: PSF, therefore, is an important determinant of post-stroke disability and should be evaluated for successful post-stroke rehabilitation.

An audit of the presurgical evaluation and patient selection for extratemporal resective epilepsy surgery in a resource-poor country.

PURPOSE: The selection of ideal candidates for extratemporal resective epilepsy surgery is a challenge in resource-poor countries because of the limited presurgical diagnostic facilities and their affordability. To audit the presurgical evaluation strategy and selection for extratemporal resective epilepsy surgery in a resource-poor region. METHODS: From the prospective database maintained at an epilepsy surgery center in southern India, we reviewed the data of consecutive patients who underwent presurgical evaluation from January 2005 through December 2008 for antiepileptic drug-resistant focal epilepsies emanating from the frontal, parietal and occipital lobes. Out of 285 patients, only 71 (24.9%) underwent resective surgery; the remaining 214 (75.1%) patients could not be selected for surgery. We inquired the reasons for their exclusion from surgery. RESULTS: The difference in the rates of seizure-free outcome between surgical and non-surgical groups was highly significant (73.2% vs. 7.7%, P<0.0005). The major reasons for exclusion from surgery were normal MRI in 107 (50%), inability to afford invasive EEG monitoring in 40 (18.7%) and lesion location adjacent to eloquent cortical areas in 27 (12.6%) patients. While clustering of seizures and presence of preoperative neurological deficits favored surgical selection, the presence of secondary generalized seizures and discordant interictal epileptiform abnormalities were associated with exclusion from surgery. CONCLUSIONS: We conclude that, in a resource-poor country, ideal candidates for extratemporal resective epilepsy surgery are those with well-circumscribed lesions not adjoining eloquent cortical areas. In such patients, concordant EEG findings and absence of preoperative secondary generalized seizures reinforce selection for surgery.

Community health insurance in Gudalur, India, increases access to hospital care.

BACKGROUND: To reduce the burden of out-of-pocket payments on households in India, the government has introduced community health insurance (CHI) as part of its National Rural Health Mission. Indian CHI schemes have been shown to provide financial protection and have the potential to improve quality of care, but do not seem to improve access. This study examines this dimension of CHI performance and explores conditions under which a CHI scheme can improve access to hospital care for the poor. METHODS: We conducted a panel survey at the ACCORD-AMS-ASHWINI (AAA) CHI scheme in India. The AAA CHI scheme protects the poorest sections of society against hospitalization expenses. 297 insured and 248 matched uninsured households were observed by village volunteers on a weekly basis for 12 months. Any patient presenting with a 'major ailment' in these households was interviewed using a structured questionnaire. Outcomes measured were utilization of hospital services, cost of treatment and quality of treatment received. RESULTS: The two cohorts were similar regarding demographic, social and economic parameters. More insured than uninsured households expressed trust in the CHI scheme organizers. Both groups had similar levels of minor ailments, but the insured had higher incidence of chronic and major ailments. Insured patients had a hospital admission rate 2.2 times higher than uninsured patients, independent of confounding factors. This higher rate among the insured was also found in children and those with pre-existing conditions. Vulnerable sections of the insured population-children, pregnant women, the poorest-had the highest admission rates. Most admissions, in both cohorts, took place in the ASHWINI hospital. Credible and trustworthy organizers, effective providers, low co-payments, and low indirect costs contributed to this result. CONCLUSIONS: A well-designed CHI scheme has the potential to improve access to hospital care, even for vulnerable sections of the community-the poorest, individuals with pre-existing conditions like diabetes and hypertension, and pregnant women.

Marital status, family ties, and self-rated health among elders in South India.

This article examines the impact of familial social support ties (indicated by marital status, kin availability, sources of economic support, and frequency and quality of emotional interaction) on subjective health perception among a sample of elderly men and women aged 60 and older in South India. We used 1993 survey data from three states of South India: Kerala, Tamil Nadu, and Karnataka. We hypothesized that (a) widowhood would be associated with poorer self-rated health, (b) number of kin ties would be positively associated with self-rated health, (c) economic and emotional support from kin would improve outcomes, and (d) these associations would be stronger among women than among men. Results of logistic regression techniques supported the first hypothesis and partially supported the third. With regard to the second hypothesis, the presence of specific kin rather than the number of each type of family member was important. For the fourth hypothesis, results suggest that men and women in this sample have broadly similar associations between widowhood and self-rated health. For women however, controlling for socioeconomic status did not weaken the association between widowhood and self-rated health, suggesting the symbolic/cultural importance of this status. In general, these findings suggest that theories on the importance of marital status and kin ties for older adults' self-rated health, which were developed and tested in Western societies, need to be refined for Asian societies, where the nature of marriage and widowhood are different.

Demography of Indian aging, 2001-2051.

India is the second largest country in the world, with 72 million elderly persons above 60 years of age as of 2001, compared to China's 127 million. One of the objectives of this paper is to assess the emerging scenario of elderly for the first half of the 21st century. According to projections, the elderly in the age group 60 and above is expected to increase from 71 million in 2001 to 179 million in 2031, and further to 301 million in 2051; in the case of those 70 years and older, they are projected to increase from 27 million in 2001 to 132 million in 2051. Among the elderly persons 80 and above, they are likely to improve their numbers from 5.4 million in 2021 to 32.0 million in 2051. The increasing number and proportion of elderly will have a direct impact on the demand for health services and pension and social security payments. Mobilizing resources for geriatric care and providing sufficient maintenance for the elderly will emerge as a major responsibility for heath-care providers and pension economists.