Objectives: This study aimed to identify gaps in palliative care (PC) provision across the National Cancer Grid (NCG) centres in India.
Methods: We performed a cross-sectional validated web-based survey on 102 NCG cancer centres (Nov ’17 to April ’18). The survey questionnaire had seven sections collecting data relating to the capacity to provide cancer care and PC, drug availability for pain and symptom control, education, advocacy, and quality assurance activities for PC.
Results: Eighty-nine NCG centres responded for this study—72.5% of centres had doctors with generalist PC training, whereas 34.1% of centres had full-time PC physicians; 53.8% had nurses with 6 weeks of PC training; 68.1% of the centres have an outpatient PC and 66.3% have the facility to provide inpatient PC; 38.5% of centres offer home-based PC services; 44% of the centres make a hospice referral and 68.1% of the centres offer concurrent cancer therapy alongside PC. Among the centres, 84.3% have a licence to procure, store and dispense opioids, but only 77.5% have an uninterrupted supply of oral morphine for patients; 61.5% centres have no dedicated funds for PC, 23.1% centres have no support from hospital administration, staff shortage—69.2% have no social workers, 60.4% have no counsellors and 76.9% have no volunteers. Although end-of-life care is recognised, there is a lack of institutional policy. Very few centres take part in quality control measures.
Conclusions: The majority of the NCG centres have the facilities to provide PC but suffer from poor implementation of existing policies, funding and human resources.
Background: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries.
Objectives: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life.
Methods: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life.
Results: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001).
Conclusion: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.
Purpose: This joint position statement, by the Indian Association of Palliative Care (IAPC) and Academy of Family Physicians of India (AFPI), proposes to address gaps in palliative care provision in the country by developing a community-based palliative care model that will empower primary care physicians to provide basic palliative care.
Evidence: India ranks very poorly, 67th of 80 countries in the quality of death index. Two-thirds of patients who die need palliative care and many such patients spend the last hours of life in the Intensive care unit. The Indian National Health Policy (NHP) 2017 and other international bodies endorse palliative care as an essential health-care service component. NHP 2017 also recommends development of distance and continuing education options for general practitioners to upgrade their skills to provide timely interventions and avoid unnecessary referrals.
Methods: A taskforce was formed with Indian and International expertise in palliative care and family medicine to develop this paper including an open conference at the IAPC conference 2017, agreement of a formal liaison between IAPC and AFPI and wide consultation leading to the development of this position paper aimed at supporting integration, networking, and joint working between palliative care specialists and generalists. The WHO model of taking a public health approach to palliative care was used as a framework for potential developments; policy support, education and training, service development, and availability of appropriate medicines.
Recommendations: This taskforce recommends the following (1) Palliative care should be integrated into all levels of care including primary care with clear referral pathways, networking between palliative care specialist centers and family medicine physicians and generalists in community settings, to support education and clinical services. (2) Implement the recommendations of NHP 2017 to develop services and training programs for upskilling of primary care doctors in public and private sector. (3) Include palliative care as a mandatory component in the undergraduate (MBBS) and postgraduate curriculum of family physicians. (4) Improve access to necessary medications in urban and rural areas. (5) Provide relevant in-service training and support for palliative care to all levels of service providers including primary care and community staff. (6) Generate public awareness about palliative care and empower the community to identify those with chronic disease and provide support for those choosing to die at home.
BACKGROUND: Understanding patients' decision control preferences is important in providing quality cancer care. Patients' decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family).
AIM: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction.
DESIGN: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care.
RESULTS: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States (k = 0.74) and lowest in Brazil (0.34). Passive decision control preference was significantly associated with (odds ratio per point, p value) better performance status (0.99/point, 0.017), higher education (0.64, 0.001), and country of origin (Brazil (0.26, <0.0001), Singapore (0.25, 0.0003), South Africa (0.32, 0.0002), and Jordan (2.33, 0.0037)).
CONCLUSION: Passive decision control preferences were less common (23%) than shared and active decision control preference even among developing countries. Significant predictors of passive decision control preferences were performance status, education, and country of origin.
CONTEXT: Attrition is common in longitudinal observational studies in palliative care. Few studies have examined predictors of attrition.
OBJECTIVES: To identify patient characteristics at enrollment associated with attrition in palliative oncology outpatient setting.
METHODS: In this longitudinal observational study, advanced cancer patients [ACP] enrolled in an outpatient multicenter study were assessed at baseline and 2-5 weeks later. We compared baseline characteristics between patients who returned for follow-up and those who dropped out.
RESULTS: 744 patients were enrolled from Jordan, Brazil, Chile, Korea and India. Attrition rate was 33%, with variation among countries (22%-39%; p=.023). In univariate analysis, baseline predictors for attrition were cognitive failure (odds ratio [OR] 1.23 per point in Memorial Delirium Assessment Scale; p<.01), functional status (OR 1.55 per 10 point decrease in Karnofsky Performance Status; p<.01), Edmonton Symptom Assessment System [ESAS] physical score (OR 1.03 per point; p<.01), ESAS emotional score (OR 1.05 per point; p<.01) and shorter duration between cancer diagnosis and palliative care referral in months (OR .89 per log; p=.028). In multivariate analysis, cognitive failure (OR 1.12 per point; p=.007), ESAS physical score (OR 1.18 per point; p=.027), functional status (OR 1.35 per 10 point decrease; p<.001) and shorter duration from cancer diagnosis (OR .86 per log; p=.01) remained independent predictors of attrition.
CONCLUSION: ACP with cognitive failure, increased physical symptoms, poorer performance status and shorter duration from cancer diagnosis were more likely to dropout. These results have implications for research design, patient selection and data interpretation in longitudinal observational studies.
PURPOSE: Early palliative care is beneficial in advanced lung cancer patients. We aimed to assess the feasibility of introducing early palliative care in ambulatory advanced lung cancer patients in an Indian tertiary cancer center.
METHODOLOGY: In a longitudinal, single-arm, and single-center study, fifty patients were recruited and followed up every 3-4 weeks for 6 months, measuring the symptom burden using Edmonton Symptom Assessment Scale (ESAS) and quality of life (QoL) with European Organization for Research and Treatment of Cancer-QoL tools. The primary end point of feasibility was that at least 60% of the patients should complete 50% of the planned palliative care visits and over 50% of the patients should complete QoL questionnaires. Analysis was done using Statistical Package for the Social Sciences version 20.
RESULTS: Twenty-four of fifty patients (48%) completed the planned follow-up visits. All patients completed the questionnaires at baseline and 31 (62%) at their follow-up visits. The patients' main reasons for not following up in the hospital palliative care clinic were logistics and fatigue. Tiredness, pain, and appetite loss were the highest rated symptoms at baseline (ESAS scores 3, 2.2, and 2.1, respectively). Improvement in pain and anxiety scores at follow-up visits 1 and 2 was significant (P < 0.05). Scores on QoL functioning scales improved during the follow-up period.
CONCLUSIONS: We did not meet the feasibility criteria for the introduction of early palliative care in our advanced lung cancer patients in a resource-limited country.