Initial Experiences With Integration of Palliative Medicine and Specialist Pain Services in a Tertiary Cancer Care Center in India.

Pain management constitutes a pivotal aspect of palliative care. Certain instances of distressing pain are significantly relieved through interventional pain methodologies, demanding the expertise of pain specialists. Our perspective revolves around the integration of these 2 facets, envisaging a symbiotic relationship that could enhance patient outcomes. A prospective assessment was carried out within a collaborative clinic, uniting the realms of pain management and palliative medicine. Anonymized patient information was scrutinized to grasp the advantages of this amalgamation and identify strategies to address any inherent deficiencies. Furthermore, an illustrative case study was delineated, spotlighting the collaborative dynamics at a systemic level. During the period spanning from November 2020 to June 2021, a total of 43 patients received consultations at this collaborative clinic. Each patient was exposed to a comprehensive pain management regimen, with the most frequently conducted procedure being an intercostal nerve block, which was administered in 9.30% of cases. For the provision of effective pain relief within the palliative care context, the confluence of joint consultations from cancer pain specialists emerges as a requisite measure. This approach carries the promise of optimizing pain control and augmenting the quality of palliative care.

Oral health in cancer palliative care: cross-sectional study.

OBJECTIVES: Patients on anticancer therapy attending palliative care services often have oral health problems, but not enough is known in this regard (in India). This cross-sectional study aimed to elucidate this issue. METHODS: Participants were 98 patients with metastatic cancer (52 males, 46 females) who attended the palliative care clinic and were assessed by a multidisciplinary team consisting of dental health professionals working alongside the palliative care team, between August 2021 and October 2022. Their demographic and medical details were collected from the charts. Details about oral health were assessed using the National Cancer Institute Common Terminology Criteria for Adverse Events for dysphagia and xerostomia, Dental Caries Decayed, Missing, and Filled Teeth (DMFT) index, and the WHO Mucositis scale. Quality of life was assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Module for Oral Health (EORTC QLQ-OH15). RESULTS: Patients had an average age of 58 years, with 46.9% having an Eastern Cooperative Oncology Group score of 1, and 61 (64.9%) receiving anticancer treatment along with palliative care. Dental issues were prevalent, with 39.5% classified as DMFT score grade 2. Subgroup analysis showed higher mean DMFT scores in head/neck cancers, particularly in those receiving radiation therapy (2.3) versus without (1.7), and older age (p<0.05). CONCLUSION: Patients with cancer on anticancer treatment attending a palliative care clinic, especially those with head/neck cancers and older age, had poor oral health. Further prospective research with a dentist on the team is warranted to assess its impact.

Quality of life after definitive treatment for bladder cancer: A systematic review and meta-analysis.

Radical cystectomy (RC) is considered the standard treatment for muscle invasive bladder cancer (MIBC). However, RC is often burdened by significant impact on quality of life (QoL); Continence preserving methods (e.g., continent cutaneous urinary diversion and orthotopic neobladder-ONB), have been proposed as alternatives to improve postoperative QoL. Trimodal therapy (TMT) emerged as alternative to surgery. To assess the impact of these treatments from the patients' perspective, we undertook a systematic review and meta-analysis of literature, focusing on studies reporting QoL data about each of the abovementioned approaches. A systematic review was carried out including all prospective and retrospective studies enrolling patientstreated with radical intent for non-metastatic MIBC from 1999 to 2021 (either RC or TMT). All studies included specifically reported QoL for one of the main treatment approaches explored (RC followed by ileal conduit urinary diversion-ICUD, ONB or TMT). Pooled analysis for EORTC QLQ-C30 and BLM-30 questionnaires showed that ONB yielded a significant advantage only for Physical Functioning (pooled mean standardized difference -0.73 SD, p-value 0.019, I 2 = 93 %) and for Emotional Functioning (pooled mean standardized difference -0.16 SD, p-value 0.029, I 2 = 0 %). A trend in favour of higher mean reported values after TMT for Global Health Score, Physical Functioning and Role Functioning was found, if compared to both RC approaches. Significant benefit for ONB if compared to ICUD was detected only for specific subdomains of QoL questionnaires. No direct comparison with TMT is available, but data suggest advantage of this approach when compared to both reconstructive scenarios.

Factors associated with persistent postsurgical pain after total knee or hip joint replacement: a systematic review and meta-analysis.

Studies have identified demographic, clinical, psychosocial, and perioperative variables associated with persistent pain after a variety of surgeries. This study aimed to perform a systematic review and meta-analysis of factors associated with persistent pain after total knee replacement (TKR) and total hip replacement (THR) surgeries. To meet the inclusion criteria, studies were required to assess variables before or at the time of surgery, include a persistent postsurgical pain (PPSP) outcome measure at least 2 months after a TKR or THR surgery, and include a statistical analysis of the effect of the risk factor(s) on the outcome measure. Outcomes from studies implementing univariate and multivariable statistical models were analyzed separately. Where possible, data from univariate analyses on the same factors were combined in a meta-analysis. Eighty-one studies involving 171,354 patients were included in the review. Because of the heterogeneity of assessment methods, only 44% of the studies allowed meaningful meta-analysis. In meta-analyses, state anxiety (but not trait anxiety) scores and higher depression scores on the Beck Depression Inventory were associated with an increased risk of PPSP after TKR. In the qualitative summary of multivariable analyses, higher preoperative pain scores were associated with PPSP after TKR or THR. This review systematically assessed factors associated with an increased risk of PPSP after TKR and THR and highlights current knowledge gaps that can be addressed by future research.

Cancer palliative care referral: patients' and family caregivers' perspectives - a systematic review.

BACKGROUND: Despite the evidence of palliative care benefits, referrals are infrequent and delayed. Patients and their caregivers are essential stakeholders in the referral process with valuable perspectives. This review systematically explored their perceived facilitators and barriers to palliative care referral. METHODS: 4 subject-specific databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and EMBASE), 3 multidisciplinary databases (SCOPUS, Web of Science and Cochrane database) and 11 journals from 1 January 1990 to 31 May 2022 were searched; and scored for their methodological rigour using Hawker's tool. Findings were synthesised using Popay's Narrative Synthesis method and interpreted using decision-making theory. RESULTS: 4 themes were generated from 14 studies: (1) The timing of referral should be right and communication must be comprehensive. Delays in initiating serious illness conversations, prognostication, and decision-making hindered referral. In contrast, the presence of symptoms facilitated it. (2) Referral was equated to death, and as an inferior form of treatment, a rebranding might mitigate the stigma. (3) Referral made families feel emotional and devastated; explanation and team initiatives enabled the normalisation and positive coping. (4) Long-term holistic palliative care facilitated a positive care experience and a sense of reassurance and satisfaction, enabling a smooth transition from curative to comfort care. The late referral was associated with perceived inadequate symptom management, diminished quality of life and death and complicated bereavement issues. CONCLUSION: Patients' and caregivers' predisposition to palliative care engagement was influenced by timely referral, comprehensive communication, perception and stigma about palliative care. Longitudinal association with the palliative care team mitigated negative perceptions and improved satisfaction and coping. PROSPERO REGISTRATION NUMBER: CRD42018091481.

Experiences of Adolescents with Cancer Attending a Tertiary Care Cancer Centre: A Thematic Analysis.

Objectives: Adolescents with cancer experience several psychosocial concerns. Cancer among adolescents contributes to one-fifth of cancers in India. Most of the published empirical literature on adolescents' views about their cancer experience is from high-income countries.The objectives of the study were to explore the experiences of adolescents with cancer in India. Materials and Methods: Twenty-eight adolescents were purposively recruited and participated in prospectively conducted qualitative interviews conducted at the Tata Memorial Hospital, Mumbai, between 2013 and 2015. Interview data were transcribed and analysed using Braun and Clarke's reflexive thematic analysis. Results: Two themes and several subthemes were generated during the analysis. The transition to the new reality of illness was traumatic. It embodied fear about the unknown, disease and symptoms. The experience was isolating and disfigurement further led to peer separation. Inadequate information made the adolescents anxious and worried, and children and parents experienced moments of severe distress. The love and support received from parents, siblings and extended family facilitated positive coping. Peer support was reassuring and enabled them to have a normalising experience. Discovering their inner strength, acceptance of the situation and faith in God made them resilient and hopeful. Conclusion: Adolescents with cancer experience significant emotional concerns, which are often unexplored and unaddressed. An adolescent-specific communication framework and psychosocial programme contextual to the Indian setting may be developed based on the study findings.

Development of a model of Home-based Cancer Palliative Care Services in Mumbai - Analysis of Real-world Research Data over 5 Years.

Objectives: Patients needing palliative care prefer to be cared for in the comfort of their homes. Although private home health-care services are entering the health-care ecosystem in India, for the majority it is still institution-based. Here, we describe a model of home-based palliative care developed by the Tata Memorial Hospital, a government tertiary care cancer hospital. Materials and Methods: Data on patient demographics, services provided and outcomes were collected prospectively for patients for the year November 2013 - October 2019. In the 1st year, local general physicians were trained in palliative care principles, bereavement services and out of hours telephone support were provided. In the 2nd year, data from 1st year were analysed and discussed among the study investigators to introduce changes. In the 3rd year, the updated patient assessment forms were implemented in practice. In the 4th year, the symptom management protocol was implemented. In the 5th and 6th year, updated process of patient assessment data and symptom management protocol was implemented as a complete model of care. Results: During the 6 years, 250 patients were recruited, all suffering from advanced cancer. Home care led to good symptom control, improvement of quality of life for patients and increased satisfaction of caregivers during the care process and into bereavement. Conclusion: A home-based model of care spared patients from unnecessary hospital visits and was successful in providing client centred care. A multidisciplinary team composition allowed for holistic care and can serve as a model for building palliative care capacity in low- and middle-income countries.

Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra - Children's Palliative Care Project in India.

Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010-March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.

Role of Integrative Oncology and Palliative Care Services in Improving Comfort Level and Compliance among Patients with Advanced Fungating Breast Cancer - Experience from a Rural Hospital of North Eastern India during the COVID-19 Pandemic.

Objectives: Malignant fungating breast cancers are a definite challenge to treatment due to limited knowledge and prevailing distressing symptoms. Various treatment protocols with regard to radiotherapy (RT) and chemotherapy have been reported in the literature but the knowledge of proper integration of these regimes with effective palliative care nursing care, particularly in resource poor settings, is not well understood. Hence, this study was undertaken to assess the change in the degree of comfort achieved before and after treatment of these fungating breast cancer wounds along with issues regarding compliance to such treatment in a peripheral rural medical college hospital. Materials and Methods: A total of 20 patients were selected from the medical records files of the RT department of North Bengal Medical College and Hospital who were registered and treated during the period 1 June 2019- 31 July 2021. Palliative care nursing of malodour, bleeding, maggots, pain and assessment of psychological parameters was done based on the 11-point revised Edmonton Symptom Assessment Scale at the beginning and at each subsequent follow-up visits. Patients were also individualised for receiving palliative RT, chemotherapy, surgery and hormone therapy based on their clinicodemographic profiles. Informed consent was taken from all patients and every treatment was in accordance with the ethical permissions as sought from the Institutional Ethics Committee. Statistical analysis was done based on descriptive statistics and SPSS version 22. Results: Median follow-up was 13 months. Overall, there was a significant improvement in comfort and well-being as assessed by paired t-test before and after treatment (paired t-test = 16.548; P = 0.000). However, there was no significant correlation with palliative radiation dose and schedule as per spearman's correlation coefficient. The mean radiation dose was BED 48.56 Gy3 (EQD2 = 29.3 Gy3) and the median number of fractions used was 10. Almost 50% of patients were noncompliant to treatment and this might be attributed to the prevailing COVID-19 pandemic situation. There was maximum relief with regard to bleeding control (100%), malodour dissipation (76.9%) and control of maggots infestation (71%) and these results were also found to be strongly associated with treatment as per analysis done by Chi-square test of difference of proportions. Conclusion: Effective comfort can be achieved with proper judicious combination of palliative care nursing and other oncological treatment such as radiation, chemotherapy and surgery.

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.

Role of Respite Palliative Care in Understanding and Managing Complex Palliative Care Situation - A Case Report.

Introduction: The concept of total pain encompasses a person's physical, psychological, social, spiritual, and practical struggles. Effective pain and symptom management are the core elements of palliative care which aims at reducing suffering and improving quality of life (QOL) throughout the course of illness and need to be addressed with multidisciplinary coordinated approach in a timely manner. It may be challenging for palliative care providers to address all these distressing issues during short out-patient consultations. Hence, Respite Palliative Care Unit (RPCU) is an appropriate place to provide holistic patient care. Case Description: A 59-year-old widow, from Muslim community, was following up with Palliative Medicine out-patient department for management of progressively increasing chest pain with frequent exacerbations. She remained unsatisfied with the pain management and reported moderate to severe intensity of pain despite maximal pain management using multimodal approaches. We planned to systematically explore and address the issues leading to uncontrolled pain and distress. The patient was admitted to RPCU for holistic pain management and continuity of care. We explored and addressed the complex psycho-socio-spiritual aspects contributing to the total pain experience to achieve better symptom control and improve her overall well-being. Conclusion: This case report emphasizes the role of RPCU in effective and holistic management of psychosocial, spiritual issues, difficult communication, and advanced care planning. This model of palliative care can be a valuable addition to various health-care set-ups in the developing countries for improvement of patient care.

MASCC multidisciplinary evidence-based recommendations for the management of malignant bowel obstruction in advanced cancer.

PURPOSE: To provide evidence-based recommendations on the management of malignant bowel obstruction (MBO) for patients with advanced cancer. METHODS: The Multinational Association for Supportive Care in Cancer (MASCC) MBO study group conducted a systematic review of databases (inception to March 2021) to identify studies about patients with advanced cancer and MBO that reported on the following outcomes: symptom management, bowel obstruction resolution, prognosis, overall survival, and quality of life. The review was restricted to studies published in English, but no restrictions were placed on publication year, country, and study type. As per the MASCC Guidelines Policy, the findings were synthesized to determine the levels of evidence to support each MBO intervention and, ultimately, the graded recommendations and suggestions. RESULTS: The systematic review identified 17,656 published studies and 397 selected for the guidelines. The MASCC study group developed a total of 25 evidence-based suggestions and recommendations about the management of MBO-related nausea and vomiting, bowel movements, pain, inflammation, bowel decompression, and nutrition. Expert consensus-based guidance about advanced care planning and psychosocial support is also provided. CONCLUSION: This MASCC Guideline provides comprehensive, evidence-based recommendations about MBO management for patients with advanced cancer.

Assessing medical mistrust in organ donation across countries using item response theory.

Although medical mistrust (MM) may be an impediment to public health interventions, no MM scale has been validated across countries and the assessment of MM has not been explored using item response theory, which allows generalisation beyond the sampled data. We aimed to determine the dimensionality of a brief MM measure across four countries through Mokken analysis and Graded Response Modelling. Analysis of 1468 participants from UK (n = 1179), Ireland (n = 191), India (n = 49) and Malaysia (n = 49) demonstrated that MM items formed a hierarchical, unidimensional measure, which is very informative about high levels of MM. Possible item reduction and scoring changes were also demonstrated. This study demonstrates that this brief MM measure is suitable for international studies as it is unidimensional across countries, cross cultural, and shows that minor adjustments will not impact on the assessment of MM when using these items.

Out-of-pocket costs near end of life in low- and middle-income countries: A systematic review.

BACKGROUND: Globally, there is a rise in chronic disease, including cancer, major organ failure and dementias. Patients and their families in low- and middle-income countries (LMICs) pay a high proportion of medical costs out of pocket (OOP), and a diagnosis of serious illness often has catastrophic financial consequences. We therefore conducted a review of the literature to establish what is known about OOP costs near end of life in LMICs. AIMS: To identify, organise and report the evidence on out-of-pocket costs in adult end-of-life populations in LMIC. METHODS: A systematic search of 8 databases and a hand search of relevant systematic reviews and grey literature was performed. Two independent reviewers screened titles and abstracts, assessed papers for eligibility and extracted data. The review was registered with PROSPERO and adhered to the Preferred Reporting items for Systematic Reviews and Meta Analyses. The Mixed Methods Appraisal Tool was used to assess quality. The Wagstaff taxonomy was used to describe OOP. RESULTS: After deduplication, 9,343 studies were screened, of which 51 were read and rejected as full texts, and 12 were included in the final review. OOP costs increased with advanced illness and disease severity. The main drivers of OOP were medications and hospitalizations, with high but variable percentages of the affected populations reporting financial catastrophe, lost income, foregone education and other pressures. CONCLUSION: Despite a small number of included studies and heterogeneity in methodology and reporting, it is clear that OOP costs for care near end of life in LMIC represent an important source of catastrophic health expenditures and impoverishment. This suggests a role for widespread, targeted efforts to avoid poverty traps. Financial protection policies for those suffering from incurable disease and future research on the macro- and micro- economics of palliative care delivery in LMIC are greatly needed.

Prevalence of dyspnoea and usage of opioids in managing dyspnoea in advanced cancer patients: a longitudinal observational multi-centre study from India.

Context: Breathlessness is one of the devastating symptoms experienced by patients with advanced cancer and can be very challenging to manage. Objectives: To find the point prevalence of dyspnoea in advanced cancer patients presenting to palliative care out-patient clinics, and the usage of opioids in palliation of dyspnoea. Methods: We conducted a prospective observational study among all consecutive patients presenting to the outpatient clinics of six cancer centres in India from different parts of the country. In addition to routinely documented demographic and clinical data from patient charts, study investigators collected information on the Edmonton Symptom Assessment System, Cancer Dyspnoea Scale (CDS) and European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core 15 Palliative Care. We calculated the prevalence of dyspnoea and documented the usage of opioids in palliation of dyspnoea using tests of differences across patient characteristics. Results: Between May 1, 2019, and April 30, 2020, 5,541 patients were screened for eligibility, and 288 were enrolled (48 patients from each of the six centres). We analysed the data of 288 patients, of which 36.4% had dyspnoea, with 28.5% with moderate to a severe degree (>4/10). Tiredness and loss of appetite were found to have associations with dyspnoea which were statistically significant on multivariate analysis. Standard palliative care management and routine usage of opioids preceded improvement in dyspnoea scores, CDS scores and quality of life scores throughout 7 days. Conclusion: Dyspnoea is a common symptom in advanced cancer patients, presenting to outpatient clinics, and routine documentation of dyspnoea with appropriate usage of opioids helps in mitigation. Key message: The article suggests that breathlessness is a common problem in advanced cancer patients and opioid prescription preceded symptom improvements in such patients.

Situational analysis of the quality of palliative care services across India: a cross-sectional survey.

Objective: Palliative care services in India were established in the 1980s but there is no detailed up-to-date knowledge about the quality-of-service provision nationally. We aim to describe the current quality of palliative care provision in India, as measured against nationally adopted standards. Method: A digital survey adapted from the Indian Association of Palliative Care Standards Audit Tool was administered to 250 palliative care centres. Results: Two hundred and twenty-three (89%) palliative care centres participated - 26.4% were government-run, while the rest include non-governmental organisations, private hospitals, community-led initiatives and hospices. About 200 centres 'often' or 'always' fulfilled 16/21 desirable criteria; however, only 2/15 essential criteria were 'often' or 'always' fulfilled. Only 5.8% provide uninterrupted access to oral morphine. Significance of the results: Palliative care centres in India are falling short of meeting the essential quality standards, indicating the urgent need for new initiatives to drive national change.

Implementation of an Early Palliative Care Referral Program in Lung Cancer: A Quality Improvement Project at the Tata Memorial Hospital, Mumbai, India.

OBJECTIVES: Access to early palliative care (EPC) for all patients with metastatic lung cancer is yet to be achieved in spite of recommendations. This quality improvement (QI) project was initialized to improve the rates of such referrals from the thoracic oncology clinic for all new outpatients in a premier cancer center in India. MATERIALS AND METHODS: Change in the proportion of patients receiving referrals for EPC during and after intervention (April-May 2018), compared to baseline (January-March 2018) were explored. Interventions included understanding of the process flow, identification of key drivers, and root cause analysis which identified the gaps as lack of documentation for EPC. Teaching and encouraging staff at the clinic to incorporate referrals into all initial visits for patients with metastatic lung cancer were incorporated. RESULTS: The bundle of QI interventions increased referrals from an average of 50% to 75%, mean difference = 12.64 (standard deviation = 10.13) (95% confidence interval = 22.01-3.29), P = 0.016 (two-tailed) on paired sample test. CONCLUSION: Improved referral rates for EPC in a multidisciplinary cancer clinic is possible with a QI project. This project also identifies the importance of data documentation and patient information processes that can be targeted for improvement.

Organizational Strategies for Providing Cancer Palliative Care to Many.

PURPOSE: Hospitals and healthcare organizations are today operating in an extremely competitive environment, with increasing pressure to improve quality while reducing costs. In responding to this dynamic situation, transformation of any organization requires the will to organize delivery around the needs of patients. RECENT FINDINGS: Providing palliative care to the many who require it needs the value agenda to be formulated based on mutually reinforcing components. Here we present an overview of the framework for a palliative care department in a comprehensive cancer center, which includes different levels that are embedded within a comprehensive system. Detailed information on each level is presented, followed by a discussion of quality of care, as an integrating theme for the framework. The chapter concludes by detailing the benefits that a comprehensive cancer palliative care center provides to a country's healthcare efforts through service, education, research, and advocacy.