Outcomes of relapsed/refractory extracranial germ cell tumors treated on conventional salvage chemotherapy without stem cell rescue: Experience from a tertiary cancer center.

BACKGROUND AND AIMS: Data on the outcome and prognostic indicators in extracranial relapsed/refractory germ cell tumors (rel/ref-GCTs) in children are limited to a few studies. This study looks at remission rates and outcomes of rel/ref-GCTs treated with conventional salvage chemotherapy (SC) regimens without stem cell rescue at a single center in the developing world. METHODS: Patients treated at our center from January 2009 to December 2018 were included. Risk at primary presentation was stratified as all completely excised teratomas and stage I gonadal tumors being low risk (LR); stage IV ovarian, stage III-IV extragonadal GCTs as high risk (HR), and the remaining as intermediate risk (IR). SC regimens were: vinblastine-ifosfamide-cisplatin/carboplatin or paclitaxel-ifosfamide-cisplatin/carboplatin, or cisplatin/carboplatin-etoposide-bleomycin. Local therapy was either surgery and/or radiotherapy. RESULTS: The analyzable cohort comprised 50 patients (44 = rel-GCTs; 6 = ref-GCTs) with a median age of 3.8 years and male:female ratio of 1.27:1. Primary location was ovary in 16 (32%), testicular in 10 (20%), and extragonadal in the rest (48%). Local, metastatic, and combined progression was noted in 28 (56%), 14 (28%), and eight (16%) patients, respectively, at a median time of 8.5 months. At a median follow-up of 60 months, the 5-year event-free survival (EFS) and overall survival (OS) of the entire cohort (n = 50) were 42.4% and 50.0%, respectively. In patients previously exposed to platinum analogs (n = 38), 5-year-EFS and OS were 27.7% and 31.7%, respectively. Local relapses did better when compared to metastatic and combined relapses (5-year EFS: 64% vs. 23% vs. 0%; p = .009). LR and IR tumors did better compared to HR (5-year EFS: 81.5% vs. 49.3% vs. 6.5%; p = .002). Patients with normalization of tumor markers after two cycles had a superior EFS (57.6% vs. 0%; p < .001). Relapsed tumors fared better than primary refractory GCTs (5-year EFS: 48.6% vs. 0%; p < .001). CONCLUSIONS: Primary refractory GCTs, extragonadal rel-GCTs, and rel/ref-GCTs with a poor biochemical response did poorly with conventional SC and need alternative treatment strategies. The rel/ref-testicular GCTs had the best chance of salvage despite a second recurrence (5-year EFS and OS: 28.60% and 42.90%, respectively).

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.

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.

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.

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.

Documentation of Assessment of Spiritual Concerns of Adult Advanced Cancer Patients: An Audit in a Hospital-based Specialist Palliative Care Service.

OBJECTIVES: Spirituality is a significant dimension of quality palliative care service provision. The purpose of our audit was to assess current practice and improve documentation of spiritual concerns of adult advanced cancer patients in a specialist palliative care (SPC) service in a tertiary care cancer centre. MATERIALS AND METHODS: In a standard-based audit, we measured the percentage of patient assessment forms with documentation of assessed spiritual concerns at a baseline and reaudit after practice change measures. We set the optimum standard that at least 60% of the case forms would have patients' spiritual concerns recorded. We implemented the following measures - (1) engaging our palliative care staff in team discussions on existing practice and identifying problems and (2) conducting a structured 2 h training module for assessment and documentation of patients' spiritual concerns. RESULTS: About 70.8% and 93.4% of the patient assessment forms included had documentation of assessed spiritual concerns which is higher than the standard we set at 60% and 90% at baseline and after implementing practice change, respectively. In the reaudit, we found that documentation specific to spirituality and overall psychological assessment improved. We identified that a persisting problem was the lack of recording of spiritual assessment in the patients' follow-up notes. CONCLUSION: We achieved the benchmark of a standard-based audit on documentation of assessed spiritual concerns of advanced cancer patients in our SPC service. Regular audits in clinical service delivery and documentation should be integrated into quality improvement measures in palliative care.

Meaning in life in patients with advanced cancer: a multinational study.

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.

How the COVID-19 Pandemic Experience has Affected Pediatric Palliative Care in Mumbai.

INTRODUCTION: The COVID 19 pandemic has created difficulties for children registered under Children's Palliative Care in Mumbai. 2 hospitals who have started Services last year would like to share their experiences on difficulties faced by Children and their families and unique ways in which solutions were found to help them surmount all odds. RESULTS: Some difficulties faced included transport to visit hospitals for doctor's care and essential medications; for those in native place, unavailability of doctors and medications. Difficulty to return home for those from out of Mumbai and vice versa. Unavailability of rations for those who were not original Mumbai residents. CONCLUSIONS: Unique solutions were found for each family. These are presented in this paper.

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.

Perception of Curability Among Advanced Cancer Patients: An International Collaborative Study.

BACKGROUND: There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. MATERIALS AND METHODS: Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. RESULTS: Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p = .027), higher education (OR 0.37, p < .0001), unemployment status (OR 0.69, p = .02), and being from France (OR 0.26, p < .0001) and South Africa (OR 0.52, p = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p = .0005), and being from Philippines (OR 15.49, p < .0001), Jordan (OR 8.43, p < .0001), Brazil (OR 2.17, p = .0037), and India (OR 2.47, p = .039). CONCLUSION: Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer patients. IMPLICATIONS FOR PRACTICE: The findings of this study indicate that inaccurate perception of curability among advanced cancer patients is 55%. Inaccurate perception of curability significantly differs by gender, education, performance status, employment status, and country of origin. There is great need to facilitate improved patient-physician communication so as to improve health care outcomes and patient satisfaction.

Decisional control preferences among patients with advanced cancer: An international multicenter cross-sectional survey.

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.

A Study to Assess the Feasibility of Introducing Early Palliative Care in Ambulatory Patients with Advanced Lung Cancer.

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.

Personalized symptom goals and response in patients with advanced cancer.

BACKGROUND: Improving symptoms is a major goal of cancer medicine; however, symptom response is often based on group differences and not individualized. In the current study, the authors examined the personalized symptom goal (PSG) for 10 common symptoms in patients with advanced cancer, and identified the factors associated with PSG response. METHODS: In this prospective, longitudinal, multicenter study, patients from 5 tertiary care hospitals rated the intensity of 10 symptoms using a numeric rating scale of 0 to 10 at the time of their first clinic visit and then at a second visit 14 to 34 days later. The PSG was determined for each symptom by asking patients: "At what level would you feel comfortable with this symptom?" using the same scale of 0 to 10 for symptom intensity. PSG response was defined as symptom intensity at the time of the second visit that was less than or equal to the PSG. RESULTS: Among 728 patients, the median PSG was 1 for nausea; 2 for depression, anxiety, drowsiness, well-being, dyspnea, and sleep; and 3 for pain, fatigue, and appetite. A greater percentage of patients achieved a PSG response at their second visit compared with their first visit (P<.05 except for drowsiness). Symptom response was associated with lower baseline symptom intensity based on PSG criterion but higher baseline symptom intensity based on the traditional minimal clinically important difference definition (P<.001 for all symptoms). In multivariable analysis, higher PSG and nationality were associated with greater PSG response. CONCLUSIONS: The PSG was ≤3 for a majority of patients. PSG response allows clinicians to tailor treatment goals while adjusting for individual differences in scale interpretation and factors associated with symptom response. Cancer 2016;122:1774-81. © 2016 American Cancer Society.

Intensive Care Unit death and factors influencing family satisfaction of Intensive Care Unit care.

INTRODUCTION: Family satisfaction of Intensive Care Unit (FS-ICU) care is believed to be associated with ICU survival and ICU outcomes. A review of literature was done to determine factors influencing FS-ICU care in ICU deaths. RESULTS: Factors that positively influenced FS-ICU care were (a) communication: Honesty, accuracy, active listening, emphatic statements, consistency, and clarity; (b) family support: Respect, compassion, courtesy, considering family needs and wishes, and emotional and spiritual support; (c) family meetings: Meaningful explanation and frequency of meetings; (d) decision-making: Shared decision-making; (e) end of life care support: Support during foregoing life-sustaining interventions and staggered withdrawal of life support; (f) ICU environment: Flexibility of visiting hours and safe hospital environment; and (g) other factors: Control of pain and physical symptoms, palliative care consultation, and family-centered care. Factors that negatively influenced FS-ICU care were (a) communication: Incomplete information and unable to interpret information provided; (b) family support: Lack of emotional and spiritual support; (c) family meetings: Conflicts and short family meetings; (d) end of life care support: Resuscitation at end of life, mechanical ventilation on day of death, ICU death of an elderly, prolonged use of life-sustaining treatment, and unfamiliar technology; and (e) ICU environment: Restrictive visitation policies and families denied access to see the dying loved ones. CONCLUSION: Families of the patients admitted to ICU value respect, compassion, empathy, communication, involvement in decision-making, pain and symptom relief, avoiding futile medical interventions, and dignified end of life care.

Pilot Testing of Triage Coding System in Home-based Palliative Care Using Edmonton Symptom Assessment Scale.

INTRODUCTION: Home-based palliative care is an essential model of palliative care that aims to provide continuity of care at patient's own home in an effective and timely manner. This study was a pilot test of triage coding system in home-based palliative care using Edmonton Symptom Assessment System (ESAS) scale. METHODS: Objective of the study was to evaluate if the triage coding system in home-based palliative care: (a) Facilitated timely intervention, (b) improved symptom control, and (c) avoided hospital deaths. Homecare services were coded as high (Group 1 - ESAS scores ≥7), medium (Group 2 - ESAS scores 4-6), and low (Group 3 - ESAS scores 0-3) priority based on ESAS scores. In high priority group, patients received home visit in 0-3 working days; medium priority group, patients received home visit in 0-10 working days; and low priority group, patients received home visit in 0-15 working days. The triage duration of home visit was arbitrarily decided based on the previous retrospective audit and consensus of the experts involved in prioritization and triaging in home care. RESULTS: "High priority" patients were visited in 2.63 ± 0.75 days; "medium priority" patients were visited in 7.00 ± 1.5 days, and "low priority" patients were visited in 10.54 ± 2.7 days. High and medium priority groups had a statistically significant improvement in most of the ESAS symptoms following palliative home care intervention. Intergroup comparison showed that improvement in symptoms was the highest in high priority group compared to medium and low priority group. There was an 8.5% increase in home and hospice deaths following the introduction of triage coding system. There was a significant decrease in deaths in the hospital in Group 1 (6.3%) (χ (2) = 27.3, P < 0.001) compared to Group 2 (28.6%) and Group 3 (15.4%). Group 2 had more hospital deaths. Interval duration from triaging to first intervention was a significant predictor of survival with odds ratio 0.75 indicating that time taken for intervention from triaging was more significantly affecting survival than group triaging. CONCLUSION: Pilot study of testing triaging coding system in home-based palliative care showed, triage coding system: (a) Facilitated early palliative home care intervention, (b) improved symptom control, (c) decreased hospital deaths, predominantly in high priority group, and (d) time taken for intervention from triaging was a significant predictor of survival.

Fatigue and Quality of Life Outcomes of Palliative Care Consultation: A Prospective, Observational Study in a Tertiary Cancer Center.

PURPOSE: Fatigue is one of the most common symptoms seen in patients with advanced cancer. It is known to influence the Quality of Life (QoL) of patients. This study examines the interrelationship of fatigue and QoL in patients with advanced cancer on palliative care. METHODS: A prospective cohort study was conducted in the outpatient clinic of the Department of Palliative Medicine from January to June 2014. Patients with advanced cancer registered with hospital palliative care unit, meeting the inclusion criteria (Eastern Cooperative Oncology Group [ECOG] ≤3, Edmonton Symptom Assessment Scale [ESAS] fatigue score ≥1), and willing to participate in the study were assessed for symptom burden (ESAS) and QoL (European Organization for Research and Treatment of Cancer QoL Core 15-Palliative module [EORTC-QoL PAL15]). All study patients received standard palliative care consultation and management. They were followed up in person or telephonically within 15-30 days from the first consult for assessment of outcomes. RESULTS: Of a total of 500 cases assessed at baseline, 402 were available for follow-up (median age of 52 years; 51.6% male). On the EORTC-QoL PAL15 scale, overall QoL, emotional functioning, and constipation were found to be significantly associated with severity of fatigue at baseline (P < 0.05). Statistically significant improvement in fatigue score was observed (P < 0.001) at follow-up. Improvement in physical functioning and insomnia were significantly associated with better fatigue outcomes. CONCLUSIONS: Fatigue improved with the standard palliative care delivered at our specialty palliative care clinic. Certain clinical, biochemical factors and QoL aspects were associated with fatigue severity at baseline, improvement of which lead to lesser fatigue at follow-up.

Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence.

INTRODUCTION: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. METHODS: The question for the literature search was - Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. RESULTS: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014), and Kwon et al.(2013) showed that early specialist palliative care improves health care utilization, planned discharge, less emergency room visits, and better hospice utilization. Studies by Wiese et al. (2013), Hui et al. (2014) and Temel et al. (2010) showed that early specialist palliative care improves end-of-life care outcomes. Study by Rugno et al. (2014) showed that early specialist palliative care improves health-related communication. Studies by Wallen et al. (2012) and Zimmermann et al. (2014) shows early specialist palliative care improves patient and family satisfaction. There is a lack of robust evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies have demonstrated few negative outcomes of early specialist palliative care intervention. CONCLUSIONS: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.

Minimal clinically important differences in the Edmonton Symptom Assessment Scale in cancer patients: A prospective, multicenter study.

BACKGROUND: The Edmonton Symptom Assessment Scale (ESAS) is widely used for symptom assessment in clinical and research settings. A sensitivity-specificity approach was used to identify the minimal clinically important difference (MCID) for improvement and deterioration for each of the 10 ESAS symptoms. METHODS: This multicenter, prospective, longitudinal study enrolled patients with advanced cancer. ESAS was measured at the first clinic visit and at a second visit 3 weeks later. For each symptom, the Patient's Global Impression ("better," "about the same," or "worse") was assessed at the second visit as the external criterion, and the MCID was determined on the basis of the optimal cutoff in the receiver operating characteristic (ROC) curve. A sensitivity analysis was conducted through the estimation of MCIDs with other approaches. RESULTS: For the 796 participants, the median duration between the 2 study visits was 21 days (interquartile range, 18-28 days). The area under the ROC curve varied from 0.70 to 0.87, and this suggested good responsiveness. For all 10 symptoms, the optimal cutoff was ≥1 point for improvement and ≤-1 point for deterioration, with sensitivities of 59% to 85% and specificities of 69% to 85%. With other approaches, the MCIDs varied from 0.8 to 2.2 for improvement and from -0.8 to -2.3 for deterioration in the within-patient analysis, from 1.2 to 1.6 with the one-half standard deviation approach, and from 1.3 to 1.7 with the standard error of measurement approach. CONCLUSIONS: ESAS was responsive to change. The optimal cutoffs were ≥1 point for improvement and ≤-1 point for deterioration for each of the 10 symptoms. Our findings have implications for sample size calculations and response determination.

Priorities for global research into children's palliative care: results of an International Delphi Study.

BACKGROUND: There is an urgent need to develop an evidence base for children's palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research. METHOD: The International Children's Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe. RESULTS: A list of 26 research areas reached consensus. The top five priorities were: Children's understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children. CONCLUSIONS: Information from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.