Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure.

Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.

Systematic Review on Barriers to Access Opioid Analgesics for Cancer Pain Management from the Health Worker Perspective.

The increasing incidence of oncological diseases creates a corresponding need for effective cancer pain management (CPM). The lack of access to and availability of opioid analgesics in most countries leads to avoidable suffering. This systematic review aims to identify barriers to accessing opioids, as described in literature that reflects the perspective of health-care workers. A systematic literature search was performed in May 2018 and updated in December 2022, using search terms related to "cancer pain," "opioid analgesics," "access," and "health-care personnel." Medline, Embase, and PsycInfo were searched. Forty-two studies met the inclusion criteria. Principal barriers that have hindered licit access to medical opioids include regulatory, systemic, educational, patient-related, and societal. These barriers are rooted in a lack of adequate education about the importance and significance of appropriate CPM. Barriers were often mutually reinforcing. A interdisciplinary approach is required to overcome them. This research contributes to the important global health issue of unduly limited access to opioid analgesics. It provides interdisciplinary solutions in terms of guidelines to ensure that governments respect, protect, and fulfill the right to the highest attainable standard of health, which includes the relief of severe pain.

Developing a Screening Tool for Serious Health-related Suffering for Low- and Middle-Income Countries - Phase-1: Domain Identification and Item Generation.

Objectives: The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care. Materials and Methods: Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling. Results: The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference. Conclusion: The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.

Development and Progress of a Collaborative Learning Model for Quality Improvement in the Field of Palliative Care in India.

Quality is central to healthcare and even more so in the field of palliative care. Palliative care approach is centered around discovering facets of care crucial to improving the quality of life of the patient; be it symptom control, emotional concerns, impact on social roles or reviving the sense of spiritual connectedness. Although there are essential and desirable standards for quality of services, the journey taken by a service, toward quality improvement (QI), is often complex and uncharted. It is up to individual service units to strive toward improvement and reach higher levels of quality. Evidence suggests using a structured methodology for successful improvement in healthcare quality, as most problems are complex and multifaceted. This article introduces the concept and application of QI methodology in the field of palliative care in India and provides an overview of the first cohort of QI projects, facilitated through an international collaborative. The sequence of training, the tools, and the key ingredients for success are enumerated.

"Relax City Homecare team; protocols are ready for you" - A Quality Improvement Project Conducted on Behalf of the City Homecare Unit Team at the Trivandrum Institute of Palliative Sciences.

CONTEXT: The city homecare unit (CHU) of the Trivandrum Institute of Palliative Sciences was dissatisfied with the quality of care provided to their patient population. AIMS: This study aims to improve the average satisfaction score of CHU during their daily homecare services. SETTINGS AND DESIGN: The improvement project for the CHU activities was conducted with a prospective plan-do-study-act design, with stepwise application of improvement tools. MATERIALS AND METHODS: The A3 quality improvement (QI) methodology, which uses tools for (i) analysing contributors (process mapping, cause-effect diagram); (ii) to derive key drivers (Pareto chart) and (iii) for measuring impact of interventions and sustainability (annotated run chart) was applied. The project was conducted as a mentored activity of the PC-PAICE program. The team's weekly average satisfaction score was recorded prospectively as the outcome parameter, with 0 representing total dissatisfaction and 10 representing total satisfaction. Accuracy of triaging and appropriateness of registration process were the process parameters selected. These were recorded as run charts across the project period of 9 months. ANALYSIS AND RESULTS: The cause-effect tool and the impact effort tool were used to analyse the mapped CHU processes. Even though we identified 22 contributors to the problem, eight of them were found to be significant. Key drivers were determined based on these eight and applied to the CHU processes. Over the project period, the satisfaction scores of the CHU improved significantly from 5.82 to 7.6 that is, satisfaction levels were high on most days. The triaging and registration goals were achieved. The team also built its own capacity for QI. CONCLUSION: The application of the A3 methodology simplified and streamlined efforts and achieved the quality goal for the CHU team.

Epilogue: Reflections from International Mentors of the Quality Improvement Training Programme in India.

The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.

Decision-making around Commencing Dialysis.

The decision regarding dialysis initiation is complex. Awareness that renal replacement therapy should not be regarded as default therapy for every patient with advanced renal failure is necessary. Decision to initiate dialysis and modality should be individualized in a shared decision-making process involving the treating nephrologist and the patient. Patients should receive predialysis education early in the course of chronic kidney disease so as to help prepare them well in advance for this eventuality. Withholding dialysis may be a reasonable option in a certain subset of patients, especially elderly patient with multiple co-morbid illnesses. Comprehensive conservation care should be offered in all patients where the decision to not dialyze is taken.

Symptom Management among Patients with Chronic Kidney Disease.

Patients with chronic kidney disease (CKD) experience high symptom burden, both physical and psychological, that is underrecognized and undertreated. The high symptom burden significantly impacts the quality of life for patients and their families. This review enumerates the various physical and psychological symptoms that patients with CKD often experience and guides in the management of these symptoms. This review follows the recommended international guidelines and has been tailored to suit the Indian context.

Oncology-Based Palliative Care Development: The Approach, Challenges, and Solutions From North-East Region of India, a Model for Low- and Middle-Income Countries.

BACKGROUND: Access to palliative care within healthcare systems of low- and middle-income countries (LMICs) has never been more pronounced than in current times. The Lancet Commission Report (2018) estimates that 80% of global serious health-related suffering (SHS), which demands access to palliative care for its relief, are in LMICs. Cancer is a major contributor to SHS and a rapidly growing burden in LMICs. Similar to many LMICs, cancer is a leading cause of death in India. The North-East Region (NER) of India has a high prevalence of cancer and paucity of services for cancer and palliative care. OBJECTIVES: To describe the strategies used to initiate and strengthen palliative care services integrated with the comprehensive cancer care initiatives in the state of Assam in NER. METHODS: After an initial assessment of the status of palliative care in the NER, a multipronged strategy was adopted that aligned with the WHO framework recommended for initiating palliative care services. A core team working with a government and private collaborative strategized and activated supportive policies, education, and training and improved access and availability to essential drugs, while implementing the components synchronously within the state. SIGNIFICANCE: This project demonstrates an informed regional adaptation of the WHO model. It highlights the strengths of integrating palliative care within cancer care program right from its inception. It emphasizes the sustainability of services activated across public healthcare systems, as compared with the donor- or champion-driven initiatives. The outcome of this project underlines the relevance of this model for LMIC regions with similar health systems and sociocultural and economic contexts.

The Palliative Care-Promoting Access and Improvement of the Cancer Experience (PC-PAICE) Project in India: A Multisite International Quality Improvement Collaborative.

Mentors at seven U.S. and Australian academic institutions initially partnered with seven leading Indian academic palliative care and cancer centers in 2017 to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement (QI). From its inception in 2017 to 2020, the Palliative Care-Promoting Accesst and Improvement of the Cancer Experience Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai QI training hub in 2019 with philanthropic support. In 2020, the project which is now named Enable Quality, Improve Patient care - India (EQuIP-India) focuses on both palliative care and cancer teams. EQuIP-India now leads ongoing Indian national collaboratives and training in QI and is integrated into India's National Cancer Grid. Palliative Care-Promoting Accesst and Improvement of the Cancer Experience demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer QI. It is one of the several networked and blended learning approaches with potential for rapid scaling of evidence-based practices.

Concerns and Coping Strategies of Persons Under Institutional Quarantine During SARS-CoV-2 Pandemic.

INTRODUCTION: The World Health Organization has declared severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) as a pandemic. The interventions employed by various health authorities in combating the infection may help in eliminating the threat; however, they have long-term cognitive and mental health effects on the population. AIMS: The primary objective was to assess the prevalent concerns and coping strategies and perspectives in persons suspected of SARS-CoV-2 infection under institutional quarantine in India during the period from April 2020 to May 2020. SETTING AND DESIGN: Its a cross-sectional observational study conducted in the National Cancer Institute, Jhajjar, India. METHODOLOGY: After ethical clearance, convenience sampling was done. Relevant demographic details were obtained. Health-care professionally administered questionnaire to assess psychological concerns and coping mechanisms. All statistics are deemed to be descriptive only. RESULTS: The most common physical concern was fever seen in 37% of respondents, followed by cough in 31% and sore throat in 29%. In terms of emotional concerns, 55.3% of respondents were worried and 43% were anxious and 33% were sad. About 80.6% of participants selected support from family and friends helped them cope during the institutional quarantine. 57% maintained a daily routine, 70% selected praying, and 45% used music as a coping strategy. Only 2% felt that they were unable to cope. CONCLUSION: It highlights that the psychological impact of illness on affected individuals should not be overlooked as it may have the potential to cause major psychiatric morbidity. It also provides a crucial assessment of their coping mechanisms.

Approaches and Best Practices for Managing Cancer Pain within the Constraints of the COVID-19 Pandemic in India.

Novel corona virus disease 2019 (COVID-19) is an ongoing pandemic that has impacted the entire world. The Indian government has responded strongly and very stringently to the crisis, through a nationwide lockdown. The health-care (HC) systems in the country are striving hard to maintain equitable care across illness spectra, while responding the emergencies imposed by the COVID-19 crisis. Under these circumstances, guidelines for managing several diseases including that for cancer care have been modified. As modified guidelines for cancer care have their focus on disease management, cancer pain management and maintaining continuity of care for patients with advanced progressive disease have taken a backseat in the available cancer care guidelines. This article describes the challenges, approaches to solutions with evidence-based practices that can be utilized to ensure competent management of cancer pain during the COVID-19 pandemic in India. It provides an overview of adapting to telehealth consultations for identification, evaluation and management of cancer pain, safe and rational use of analgesics and adjuvant drugs, recognizing and responding to holistic care needs and addressing the total pain, ensuring continuity of pain management, and strategies when complying with narcotic drug regulations, while ensuring safety of patients and HC providers.

Palliative Care in Coronavirus Disease 2019 Pandemic: Position Statement of the Indian Association of Palliative Care.

The global pandemic involving severe acute respiratory syndrome-coronavirus-2 has brought new challenges to clinical practice and care in the provision of palliative care. This position statement of the Indian Association of Palliative Care (IAPC) represents the collective opinion of the experts chosen by the society and reports on the current situation based on recent scientific evidence. It purports to guide all health-care professionals caring for coronavirus disease 2019 (COVID-19) patients and recommends palliative care principles into government decisions and policies. The statement provides recommendations for palliative care for both adults and children with severe COVID-19 illness, cancer, and chronic end-stage organ impairment in the hospital, hospice, and home setting. Holistic care incorporating physical, psychological, social, and spiritual support for patients and their families together with recommendations on the rational use of personal protective equipment has been discussed in brief. Detailed information can be accessed freely from the website of the IAPC http://www.palliativecare.in/. We hope that this position statement will serve as a guiding light in these uncertain times.

Palliative care clinicians and online education in India: a survey.

BACKGROUND: Whether online resources can facilitate spread of palliative care knowledge and skills in India is an urgent question given few providers and a large, ageing population. OBJECTIVES: We surveyed needs and feasibility regarding e-learning. METHODS: Indian, Australian and North American palliative care experts developed an electronic survey using Qualtrics, emailed to all registrants of the 2017 Indian Association of Palliative Care (IAPC) conference and distributed during the conference. RESULTS: Of 60 respondents (66% men, 60% doctors), most worked in hospitals and had oncology backgrounds, and 35% were from Kerala and Tamil Nadu. Most (90.9%) received palliative care training in India or overseas with 41% trained in a Trivandrum Institute of Palliative Sciences residential course (4-6 weeks). 17% completed the IAPC essential certificate and 22% had undertaken various distance learning courses. Interest in online training was substantial for most aspects of palliative care. CONCLUSION: There was a high level of interest and reported feasibility in taking a case-based online course. This pilot survey provides support for online case-based education in India, particularly among physicians.

The PEP Project - Synergistic Community Based Action in Prevention, Early Detection and Palliative Care, to Impact the Cancer Burden in India.

With unprecedented surge in the incidence and prevalence of cancer in India, it has become imperative to strengthen the workforce for all the domains of cancer care. A large proportion of the activity required for prevention as well as for palliation, lie outside of tertiary institutions, in the community. Palliative care (PC) as a field is expanding exponentially across the country and the service providers often engage and work actively within the local community in their region. This article describes the scope for reducing the cancer burden in the community, through capacity building of community based PC healthcare functionaries in the domains of Prevention, and Early detection of common cancers along with Palliative care - the PEP domains. It suggests aligning and enhancing the workforce already active within the community for PC, for screening, and if feasible, for early detection of common cancers. The article describes possibilities of initiating PEP activities and offers a set of screening questionnaire that may be used when engaged with family/ community setting. The aim is to integrate the activities done, to detect the need for palliative care in a family / community, with that required to detect need for evaluation of most common cancers- oral, breast and cervix. The PEP concept may be adapted to different levels, based on the team presence in the communities, degree of engagement, and availability of trainers and healthcare personnel.

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.

When to Use Methadone for pain: A Case-Based Approach.

The case studies are written in this article to illustrate how methadone might be used for pain in the Indian context. These cases might be used for discussion in a multidisciplinary team, or for individual study. It is important to understand that pain requires a multidisciplinary approach as opioids will assist only with physical, i.e. neuropathic and nociceptive pain, but not emotional, spiritual, or relational pain or the pain of immobility. The social determinants of pain were included to demonstrate how emotional, relational, and psychological dimensions of pain amplify the physical aspects of pain. The case studies follow a practical step-wise approach to pain while undergoing cancer treatment, pain toward the end-of-life and needing longer acting opioid. Methadone in children, and methadone in conditions of opioid toxicity or where there is a need for absorption in the proximal intestine cases are included.