Patients', carers' and healthcare providers' views of patient-held health records in Kerala, India: A qualitative exploratory study.

INTRODUCTION: Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient-held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self-management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low- and middle-income countries are critical in policy decisions but have rarely been researched. AIM: This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. METHODS: A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. RESULTS: Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHR and where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision-making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. CONCLUSION: Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self-management. PATIENT AND PUBLIC INVOLVEMENT: Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context.

Experiences and challenges of people living with multiple long-term conditions in managing their care in primary care settings in Kerala, India: A qualitative study.

BACKGROUND: Multimorbidity or multiple long-term conditions (MLTCs), the coexistence of two or more chronic conditions within an individual, presents a growing concern for healthcare systems and individuals' well-being. However, we know little about the experiences of those living with MLTCs in low- and middle-income countries (LMICs) such as India. We explore how people living with MLTCs describe their illness, their engagements with healthcare services, and challenges they face within primary care settings in Kerala, India. METHODS: We designed a qualitative descriptive study and conducted in-depth, semi-structured interviews with 31 people (16 males and 15 females) from family health centres (FHCs) in Kerala. Interview data were recorded, transcribed, and thematic analysis using the Framework Method was undertaken. FINDINGS: Two main themes and three sub-themes each were identified; (1) Illness impacts on life (a)physical issues (b) psychological difficulties (c) challenges of self-management and (2) Care-coordination maze (a)fragmentation and poor continuity of care (b) medication management; an uphill battle and (c) primary care falling short. All participants reported physical and psychological challenges associated with their MLTCs. Younger participants reported difficulties in their professional lives, while older participants found household activities challenging. Emotional struggles encompassed feelings of hopelessness and fear rooted in concerns about chronic illness and physical limitations. Older participants, adhering to Kerala's familial support norms, often found themselves emotionally distressed by the notion of burdening their children. Challenges in self-management, such as dietary restrictions, medication adherence, and physical activity engagement, were common. The study highlighted difficulties in coordinating care, primarily related to traveling to multiple healthcare facilities, and patients' perceptions of FHCs as fit for diabetes and hypertension management rather than their multiple conditions. Additionally, participants struggled to manage the task of remembering and consistently taking multiple medications, which was compounded by confusion and memory-related issues. CONCLUSION: This study offers an in-depth view of the experiences of individuals living with MLTCs from Kerala, India. It emphasizes the need for tailored and patient-centred approaches that enhance continuity and coordination of care to manage complex MLTCs in India and similar LMICs.

The Barriers to Universal Health Coverage in India and the Strategies to Address Them: A Key Informant Study.

Background: India has adopted several policies toward improving access to healthcare and has been an enthusiastic signatory to several global health policies to achieve Universal Health Coverage (UHC). However, despite these policy commitments, there has been limited success in realizing these goals. The COVID-19 pandemic has highlighted the urgent need for health system re-design and amplified the calls for such reforms. Objectives: We seek to understand the views of a diverse group of policy actors in India to address the following research questions: what are the (i) conceptualizations of UHC, (ii) main barriers to realizing UHC, and (iii) policy strategies to address these barriers. Data and Methods: We collected data through in-depth interviews with 38 policy actors from diverse backgrounds and analyzed using the Framework Method to develop themes both inductively and deductively using the Control Knob Framework of health systems. Findings: There was congruence in the conceptualization of UHC by policy actors. Quality of care, equity, financial risk protection, and a comprehensive set of services were the most commonly cited features. The lack of a comprehensive systems approach to health policies, inadequate and inefficient health financing mechanisms, and fragmentation between public and private sectors were identified as the main barriers to UHC. Contrasting views about specific strategies, health financing, provider payments, organization of the delivery system, and regulation emerged as the key policy interventions to address these barriers. Discussion and Conclusion: This is the first systematic examination of a diverse set of policy actors' problem analyses and suggestions to advance UHC goals in India. The study underscores the need to recognize the complex and interlinked nature of health system reforms and initiate a departure from path-dependent vertical interventions to bring about transformative change.

Exploring Factors Affecting Health Care Providers' Behaviors for Maintaining Continuity of Care in Kerala, India; A Qualitative Analysis Using the Theoretical Domains Framework.

Introduction: Access to patients' documented medical information is necessary for building the informational continuity across different healthcare providers (HCP), particularly for patients with non-communicable diseases (NCD). Patient-held health records (PHR) such as NCD notebooks have important documented medical information, which can contribute to informational continuity in the outpatient settings for patients with diabetes and hypertension in Kerala. We aimed to use the theoretical domains framework (TDF) to identify the perceived HCP factors influencing informational and management continuity for patients with diabetes and hypertension. Methods: We re-analyzed semi-structured interview data for 17 HCPs with experience in the NCD programme in public health facilities in Kerala from a previous study, using the TDF. The previous study explored patients, carers and HCPs experiences using PHRs such as NCD notebooks in the management of diabetes and hypertension. Interview transcripts were deductively coded based on a coding framework based on the 14 domains of TDF. Specific beliefs were generated from the data grouped into the domains. Results: Data were coded into the 14 domains of TDF and generated 33 specific beliefs regarding maintaining informational and management continuity of care. Seven domains were judged to be acting as facilitators for recording in PHRs and maintaining continuity. The two domains "memory, attention and decision process" and "environmental context and resources" depicted the barriers identified by HCPs for informational continuity of care. Conclusion: In this exploration of recording and communicating patients' medical information in PHRs for patients with diabetes and hypertension, HCPs attributions of sub-optimal recording were used to identify domains that may be targeted for further development of supporting intervention. Overall, nine domains were likely to impact the barriers and facilitators for HCPs in recording in PHRs and communicating; subsequently maintaining informational and management continuity of care. This study showed that many underlying beliefs regarding informational continuity of care were based on HCPs' experiences with patient behaviors. Further research is needed for developing the content and appropriate support interventions for using PHRs to maintain informational continuity.

A systematic review of home-based records in maternal and child health for improving informational continuity, health outcomes, and perceived usefulness in low and middle-income countries.

BACKGROUND: Evidence shows that a gap in the documentation of patients' past medical history leads to errors in, or duplication of, treatment and is a threat to patient safety. Home-based or patient-held records (HBR) are widely used in low and middle-income countries (LMIC) in maternal and childcare. The aim is to systematically review the evidence on HBRs in LMICs for (1) improving informational continuity for providers and women/families across health care visits and facilities, (2) to describe the perceived usefulness by women/families and healthcare providers, and (3) maternal and child health outcomes of using HBRs for maternal and child health care. METHODS: The protocol was registered in PROSPERO (CRD42019139365). We searched MEDLINE, EMBASE, CINAHL, and Global Index Medicus databases for studies with home-based records from LMICs. Search terms pertained to women or parent-held records and LMICs. Two reviewers assessed studies for inclusion using a priori study selection criteria- studies explaining the use of HBRs in LMIC for maternal and child health care. The included study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results from all study designs were summarised narratively. RESULTS: In total, 41 papers were included in the review from 4514 potential studies. Included studies represented various study designs and 16 countries. The least evaluated function of HBR was information continuity across health care facilities (n = 6). Overall, there were limited data on the usefulness of HBRs to providers and mothers/families. Home-based records were mostly available for providers during health care visits. However, the documentation in HBRs varied. The use of HBRs is likely to lead to improved antenatal visits and immunisation uptake, and skilled birth delivery in some settings. Mothers' knowledge of breastfeeding practices and danger signs in pregnancy improved with the use of HBRs. One randomised trial found the use of HBRs reduced the risk of cognitive development delay in children and another reported on trial lessened the risk of underweight and stunted growth in children. CONCLUSION: There is limited literature from LMICs on the usefulness of HBRs and for improving information transfer across healthcare facilities, or their use by women at home. Current HBRs from LMICs are sub-optimally documented leading to poor informational availability that defeats the point of them as a source of information for future providers.

Systematic review on the use of patient-held health records in low-income and middle-income countries.

OBJECTIVE: To review the available evidence on the benefit of patient-held health records (PHRs), other than maternal and child health records, for improving the availability of medical information for handover communication between healthcare providers (HCPs) and/or between HCPs and patients in low-income and middle-income countries (LMICs). METHODS: The literature searches were conducted in PubMed, EMBASE, CINAHL databases for manuscripts without any restrictions on dates/language. Additionally, articles were located through citation checking using previous systematic reviews and a grey literature search by contacting experts, searching of the WHO website and Google Scholar. RESULTS: Six observational studies in four LMICs met the inclusion criteria. However, no studies reported on health outcomes after using PHRs. Studies in the review reported patients' experience of carrying the records to HCPs (n=3), quality of information available to HCPs (n=1) and the utility of these records to patients (n=6) and HCPs (n=4). Most patients carry PHRs to healthcare visits. One study assessed the completeness of clinical handover information and found that only 41% (161/395) of PHRs were complete with respect to key information on diagnosis, treatment and follow-up. No protocols or guidelines for HCPs were reported for use of PHRs. The HCPs perceived the use of PHRs improved medical information availability from other HCPs. From the patient perspective, PHRs functioned as documented source of information about their own condition. CONCLUSION: Limited data on existing PHRs make their benefits for improving health outcomes in LMICs uncertain. This knowledge gap calls for research on understanding the dynamics and outcomes of PHR use by patients and HCPs and in health systems interventions. PROSPERO REGISTRATION NUMBER: CRD42019139365.

Task-sharing interventions for improving control of diabetes in low-income and middle-income countries: a systematic review and meta-analysis.

BACKGROUND: Task-sharing interventions using non-physician health-care workers might be a potential diabetes management strategy in health systems that are constrained by physician shortages, such as those in low-income and middle-income countries (LMICs). METHODS: We did a systematic review and meta-analysis of task-sharing intervention strategies for managing type 2 diabetes in LMICs. We searched PubMed, Embase, and CINAHL from database inception to Sept 25, 2019, for studies that were randomised control trials or cluster randomised trials with task-shifted or task-shared interventions delivered to adults (≥18 years) by non-physician health workers versus usual care, done in LMICs with glycated haemoglobin (HbA1c) or fasting blood sugar (FBS) as outcome measures. The methodological quality of included studies was assessed using the Cochrane risk of bias tool. Random-effects model meta-analysis was used to estimate the population average pooled mean difference for HbA1c and FBS with 95% CIs. Our study protocol was registered in the PROSPERO database (CRD42018081015). FINDINGS: We found 4213 studies from the literature search, of which 46 (1·1%) were eligible for the narrative synthesis, including a total of 16 973 participants. 16 of these studies were excluded from the meta-analysis due to high risk of bias. 24 studies with a total of 5345 participants were included in the meta-analysis of HbA1c and 18 studies with a total of 3287 participants for FBS. Interventions led to an average reduction in HbA1c when tasks were delivered by nurses (averaged pooled mean difference -0·54% [95% CI -0·89 to -0·18]; I2=80%) and pharmacists (-0·91% [-1·15 to -0·68]; I2=58%), but not when they were delivered by dietitians (-0·50% [-1·10 to 0·09]; I2=54%) or community health workers (0·05% [0·03 to 0·07]; I2=0%). A reduction in average FBS was also observed when interventions were delivered by pharmacists (average pooled mean difference -36·26 mg/dL [-52·60 to -19·92]; I2=78%) but not nurses (-7·46 mg/dL [-18·44 to 3·52]; I2=79%) or community health workers (-5·41 [-12·74 to 1·92]; I2=71%). Only one study reported on FBS when tasks were delivered by dietitians, with a mean difference of -35·00 mg/dL (-65·96 to -4·04). INTERPRETATION: Task sharing interventions with non-physician healthcare workers show moderate effectiveness in diabetes management in LMIC settings. Although relatively high heterogeneity limits the interpretation of the overall findings, interventions led by pharmacists and nurses in LMICs with relatively high physician density are effective strategies in the management of diabetes. FUNDING: Wellcome Trust-Department of Biotechnology India Alliance.

Patient, caregiver, and health care provider perspectives on barriers and facilitators to heart failure care in Kerala, India: A qualitative study.

Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aims to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients' motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients' health status were important enablers of high-quality care. Health care providers' advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients' self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.

Perceived facilitators and barriers of enrolment, participation and adherence to a family based structured lifestyle modification interventions in Kerala, India: A qualitative study.

Background: The objective of the study was to describe participants' and providers' perspectives of barriers and facilitators of enrolment, participation and adherence to a structured lifestyle modification (SLM) interventions as part of the PROLIFIC trial in Kerala, India. Methods: Family members who had been enrolled for 12-months or more in a family-based cardiovascular risk reduction intervention study (PROLIFIC Trial) were purposively sampled and interviewed using a semi-structured guide. The non-physician health workers (NPHWs) delivering the intervention were also interviewed or included in focus groups (FGDs). Thematic analysis was used for data analysis. Results: In total, 56 in-depth interviews and three FGDs were conducted. The descriptive themes emerged were categorised as (a) motivation for enrolment and engagement in the SLM interventions, (b) facilitators of adherence, and (c) reasons for non-adherence. A prior knowledge of familial cardiovascular risk, preventive nature of the programme, and a reputed organisation conducting the intervention study were appealing to the participants. Simple suggestions of healthier alternatives based on existing dietary practices, involvement of the whole family, and the free annual blood tests amplified the adherence. Participants highlighted regular monitoring of risk factors and provision of home-based care by NPHWs as facilitators for adherence. Furthermore, external motivation by NPHWs in setting and tracking short-term health goals were perceived as enablers of adherence. Nonetheless, home makers expressed difficulty in dealing with varied food choices of family members. Young adults in the programme noted that dietary changes were affected by eating out as they wanted to fit in with peers. Conclusions: The findings suggest that a family-based, trained healthcare worker led SLM interventions are acceptable in Kerala. Increasing the number of visits by NPHWs, regular monitoring and tracking of lifestyle goals, and targeting young adults and children for dietary changes may further improve adherence to SLM interventions.

Task sharing with non-physician health-care workers for management of blood pressure in low-income and middle-income countries: a systematic review and meta-analysis.

BACKGROUND: Task sharing for the management of hypertension could be useful for understaffed and resource-poor health systems. We assessed the effectiveness of task-sharing interventions in improving blood pressure control among adults in low-income and middle-income countries. METHODS: We searched the Cochrane Library, PubMed, Embase, and CINAHL for studies published up to December 2018. We included intervention studies involving a task-sharing strategy for management of blood pressure and other cardiovascular risk factors. We extracted data on population, interventions, blood pressure, and task sharing groups. We did a meta-analysis of randomised controlled trials. FINDINGS: We found 3012 references, of which 54 met the inclusion criteria initially. Another nine studies were included following an updated search. There were 43 trials and 20 before-and-after studies. We included 31 studies in our meta-analysis. Systolic blood pressure was decreased through task sharing in different groups of health-care workers: the mean difference was -5·34 mm Hg (95% CI -9·00 to -1·67, I2=84%) for task sharing with nurses, -8·12 mm Hg (-10·23 to -6·01, I2=57%) for pharmacists, -4·67 mm Hg (-7·09 to -2·24, I2=0%) for dietitians, -3·67 mm Hg (-4·58 to -2·77, I2=24%) for community health workers, and -4·85 mm Hg (-6·12 to -3·57, I2=76%) overall. We found a similar reduction in diastolic blood pressure (overall mean difference -2·92 mm Hg, -3·75 to -2·09, I2=80%). The overall quality of evidence based on GRADE criteria was moderate for systolic blood pressure, but low for diastolic blood pressure. INTERPRETATION: Task-sharing interventions are effective in reducing blood pressure. Long-term studies are needed to understand their potential impact on cardiovascular outcomes and mortality. FUNDING: Wellcome Trust/DBT India Alliance.

Task-sharing interventions for cardiovascular risk reduction and lipid outcomes in low- and middle-income countries: A systematic review and meta-analysis.

BACKGROUND: One of the potential strategies to improve health care delivery in understaffed low- and middle-income countries (LMICs) is task sharing, where specific tasks are transferred from more qualified health care cadre to a lesser trained cadre. Dyslipidemia is a major risk factor for cardiovascular disease but often it is not managed appropriately. OBJECTIVE: We conducted a systematic review with the objective to identify and evaluate the effect of task sharing interventions on dyslipidemia in LMICs. METHODS: Published studies (randomized controlled trials and observational studies) were identified via electronic databases such as PubMed, Embase, Cochrane Library, PsycINFO, and CINAHL. We searched the databases from inception to September 2016 and updated till 30 June 2017, using search terms related to task shifting, and cardiovascular disease prevention in LMICs. All eligible studies were summarized narratively, and potential studies were grouped for meta-analysis. RESULTS: Although our search yielded 2938 records initially and another 1628 in the updated search, only 15 studies met the eligibility criteria. Most of the studies targeted lifestyle modification and care coordination by involving nurses or allied health workers. Eight randomized controlled trials were included in the meta-analysis. Task sharing intervention were effective in lowering low-density lipoprotein cholesterol (-6.90 mg/dL; 95% CI -11.81 to -1.99) and total cholesterol (-9.44 mg/dL; 95% CI -17.94 to -0.93) levels with modest effect size. However, there were no major differences in high-density lipoprotein cholesterol (-0.29 mg/dL; 95% CI -0.88 to 1.47) and triglycerides (-14.31 mg/dL; 95% CI -33.32 to 4.69). The overall quality of evidence based on Grading of Recommendations Assessment, Development and Evaluation was either "low" or "very low". CONCLUSION: Available data are not adequate to make recommendations on the role of task sharing strategies for the management of dyslipidemia in LMICs. However, the studies conducted in LMICs demonstrate the potential use of this strategy especially in terms of reduction in low-density lipoprotein cholesterol and total cholesterol levels. Our review calls for the need of well-designed and large-scale studies to demonstrate the effect of task-sharing strategy on lipid management in LMICs.