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.

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.

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.

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.

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.

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.

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.

Integration of Early Specialist Palliative Care in Cancer Care: Survey of Oncologists, Oncology Nurses, and Patients.

INTRODUCTION: Palliative care is usually delivered late in the course of illness trajectory. This precludes patients on active disease modifying treatment from receiving the benefit of palliative care intervention. A survey was conducted to know the opinion of oncologists, oncology nurses, and patients about the role of early specialist palliative care in cancer. METHODS: A nonrandomized descriptive cross-sectional study was conducted at a tertiary cancer care center in India. Thirty oncologists, sixty oncology nurses, and sixty patients were surveyed. RESULTS: Improvement in symptom control was appreciated by oncologists, oncology nurses, and patients with respect to pain (Z = -4.10, P = 0.001), (Z = -5.84, P = 0.001), (Z = -6.20, P = 0.001); nausea and vomiting (Z = -3.75, P = 0.001), (Z = -5.3, P = 0.001), (Z = -5.1, P = 0.001); constipation (Z = -3.29, P = 0.001), (Z = -4.96, P = 0.001), (Z = -4.49, P = 0.001); breathlessness (Z = -3.57, P = 0.001), (Z = -5.03, P = 0.001), (Z = -4.99, P = 0.001); and restlessness (Z = -3.68, P = 0.001), (Z = -5.23, P = 0.001), (Z = -3.22, P = 0.001). Improvement in end-of-life care management was appreciated by oncologists and oncology nurses with respect to communication of prognosis (Z = -4.04, P = 0.001), (Z = -5.20, P = 0.001); discussion on limitation of life-sustaining treatment (Z = -3.68, P = 0.001), (Z = -4.53, P = 0.001); end-of-life symptom management (Z = -4.17, P = 0.001), (Z = -4.59, P = 0.001); perimortem care (Z = -3.86, P = 0.001), (Z = -4.80, P = 0.001); and bereavement support (Z = -3-80, P = 0.001), (Z = -4.95, P = 0.001). Improvement in health-related communication was appreciated by oncologists, oncology nurses, and patients with respect to communicating health related information in a sensitive manner (Z = -3.74, P = 0.001), (Z = -5.47, P = 0.001), (Z = -6.12, P = 0.001); conducting family meeting (Z = -3.12, P = 0.002), (Z = -4.60, P = 0.001), (Z = -5.90, P = 0.001); discussing goals of care (Z = -3.43, P = 0.001), (Z = -5.49, P = 0.001), (Z = -5.61, P = 0.001); maintaining hope (Z = -3.22, P = 0.001), (Z = -4.85, P = 0.001), (Z = -5.61, P = 0.001); and resolution of conflict (Z = -3.56, P = 0.001), (Z = -5.29, P = 0.001), (Z = -5.28, P = 0.001). Patients appreciated improvement in continuity of care with respect to discharge planning (Z = -6.12, P = 0.001), optimal supply of essential symptom control medications on discharge (Z = -6.32, P = 0.001), follow-up plan (Z = -6.40, P = 0.001), after hours telephonic support (Z = -6.31, P = 0.001), and preferred place of care (Z = -6.28, P = 0.001). CONCLUSION: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.

Unpleasant subjective emotional experiencing of pain.

The field of pain medicine that once began as a supportive and compassionate care, adding value to the management of acute and chronic ailments, has now transformed into a vital and essential specialty with structured training programs and service units with professionals dedicating their careers to it. The expansion of understanding of the direct relationship of pain relief to the quality of life, uncovering of neuronal pathways, and technological advances in imaging as well as in interventional techniques have all contributed to this phenomenal growth. However, there is a growing concern whether the training programs and the specialized practitioners are gradually limiting their skilled inputs primarily within the sensory realm of the pain experience with sophisticated interventional techniques and relegating its subjective and emotional dimensions to perfunctory realms within the schema of service provision. While the specialty is still young, if we can understand the inherent aspect of these dimensions within the pain experience and acknowledge the gaps in service provision, it may be possible to champion development of truly comprehensive pain relief programs that responds effectively and ethically to a patient's felt needs. This article attempts to position the subjectivity of pain experience in context and surface the need to design complete systems of pain relief services inclusive of this dimension. It presents authors' review of literature on perspectives of 'unpleasant subjective emotional experiencing of the pain" to elucidate possible clinical implications based on the evidences presented on neuro-biology and neuro-psychology of the pain experience; the aim being to inspire systems of care where this dimension is sufficiently evaluated and managed.

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.

Clinical audit on "evaluation of special issues in adolescents with cancer treated in an adult cancer setting": an Indian experience.

BACKGROUND: Adolescents with cancer form a distinct group with special care needs. These patients are often cared in an adult supportive care setting where the special needs of adolescents are not met. AIM: To identify special issues in adolescents with cancer and to determine whether special needs of adolescents are met in an adult cancer setting MATERIALS AND METHODS: 10 adolescents with cancer were randomly chosen and retrospectively studied for physical, psychoscocial and emotional issues using an internally validated tool. RESULTS: Pain was the most common physical symptom seen in all 10 patients. 3 out of 10 patients were involved in decision making, 3 out of 10 patients had identity issues and 4 out of 10 patients had peer group isolation issues. Only 3 were aware of diagnosis and none were aware of treatment outcomes and mortality. 4 out of 10 had anxiety and depression and 3 out of 10 had body image issues. Sexuality, spiritual and existential issues were not explored in any of the patients studied. CONCLUSION: The outcomes of the study were in an adult oncology setting there was a poor recognition of key adolescent issues such as sexuality, body image, identity and peer group isolation. The psychosocial supports to these adolescents were minimal and spiritual and existential issues were not explored. The inferences drawn from this study suggested a need for multidisciplinary team approach oriented in handling adolescent care needs and preferably to have a dedicated space that will help the peer group to interact, bond and cope better with the illness.

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.