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COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center. [ABSTRACT FROM AUTHOR]

Purpose: Acute palliative care units (APCUs) admit patients with cancer for symptom control, transition to community palliative care units or hospice (CPCU/H), or end-of-life care. Prognostication early in the course of admission is crucial for decision-making. We retrospectively evaluated factors associated with patients' discharge disposition on an APCU in a cancer center.Methods: We evaluated demographic, administrative, and clinical data for all patients admitted to the APCU in 2015. Clinical data included cancer diagnosis, delirium screening, and Edmonton Symptom Assessment System (ESAS) symptoms. An ESAS sub-score composed of fatigue, drowsiness, shortness of breath, and appetite (FDSA) was also investigated. Factors associated with patients' discharge disposition (home, CPCU/H, died on APCU) were identified using three-level multinomial logistic regression.Results: Among 280 patients, the median age was 65.5 and median length of stay was 10 days; 155 (55.4%) were admitted for symptom control, 65 (23.2%) for transition to CPCU/H, and 60 (21.4%) for terminal care. Discharge dispositions were as follows: 156 (55.7%) died, 63 (22.5%) returned home, and 61 (21.8%) were transferred to CPCU/H. On multivariable analysis, patients who died were less likely to be older (OR 0.97, p = 0.01), or to be admitted for symptom control (OR 0.06, p < 0.0001), and more likely to have a higher FDSA score 21-40 (OR 3.02, p = 0.004). Patients discharged to CPCU/H were less likely to have been admitted for symptom control (OR 0.06, p < 0.0001).Conclusion: Age, reason for admission, and the FDSA symptom cluster on admission are variables that can inform clinicians about probable discharge disposition on an APCU. [ABSTRACT FROM AUTHOR]

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients (n = 26) and caregivers (n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer. [ABSTRACT FROM AUTHOR]

Purpose: Although early palliative care is recommended, resource limitations prevent its routine implementation. We report on the preliminary findings of a mixed methods study involving a randomized controlled trial (RCT) of Symptom screening with Targeted Early Palliative care (STEP) and qualitative interviews. Methods: Adults with advanced solid tumors and an oncologist-estimated prognosis of 6–36 months were randomized to STEP or symptom screening alone. STEP involved symptom screening at each outpatient oncology visit; moderate to severe scores triggered an email to a palliative care nurse, who offered referral to in-person outpatient palliative care. Patient-reported outcomes of quality of life (FACT-G7; primary outcome), depression (PHQ-9), symptom control (ESAS-r-CS), and satisfaction with care (FAMCARE P-16) were measured at baseline and 2, 4, and 6 months. Semi-structured interviews were conducted with a subset of participants. Results: From Aug/2019 to Mar/2020 (trial halted due to COVID-19 pandemic), 69 participants were randomized to STEP (n = 33) or usual care (n = 36). At 6 months, 45% of STEP arm patients and 17% of screening alone participants had received palliative care (p = 0.009). Nonsignificant differences for all outcomes favored STEP: difference in change scores for FACT-G7 = 1.67 (95% CI: −1.43, 4.77); ESAS-r-CS = −5.51 (−14.29, 3.27); FAMCARE P-16 = 4.10 (−0.31, 8.51); PHQ-9 = −2.41 (−5.02, 0.20). Sixteen patients completed qualitative interviews, describing symptom screening as helpful to initiate communication; triggered referral as initially jarring but ultimately beneficial; and referral to palliative care as timely. Conclusion: Despite lack of power for this halted trial, preliminary results favored STEP and qualitative results demonstrated acceptability. Findings will inform an RCT of combined in-person and virtual STEP. [ABSTRACT FROM AUTHOR]

Context The Edmonton Symptom Assessment System (ESAS) measures the severity of nine symptoms. Constipation and sleep disturbance are common in patients with cancer, but are not currently included in the ESAS. Objectives To validate the numerical rating scale (NRS) versions of ESAS and its revised version (ESAS-r), with the additional symptoms of constipation and sleep (CS), and to assess patient preference for either version. Methods Outpatients with advanced cancer ( N = 202) completed three assessments during a single clinic visit: ESAS-CS, and an added time window of “past 24 hours”; ESAS-r-CS, with a time window of “now” and symptom definitions; and the Memorial Symptom Assessment Scale (MSAS). Internal consistency was calculated using Cronbach's alpha. Paired t-tests compared ESAS-CS and ESAS-r-CS scores; these were correlated with MSAS using Spearman correlation coefficients. Test-retest reliability at 24 hours was assessed in 26 patients. Results ESAS-CS and ESAS-r-CS total scores correlated well with total MSAS (Spearman's rho 0.62 and 0.64, respectively). Correlation of individual symptoms with MSAS symptoms ranged from 0.54-0.80 for ESAS-CS and 0.52–0.74 for ESAS-r-CS. Although participants preferred the ESAS-r-CS format (42.8% vs. 18.6%) because of greater clarity and understandability, the “past 24 hours” time window (52.8%) was favored over “now” (21.3%). Shortness of breath and nausea correlated better for the “past 24 hours” time window (0.8 and 0.72 vs. 0.74 and 0.64 in ESAS-r-CS, respectively). The 24-hour test-retest of the ESAS-CS demonstrated acceptable reliability (intraclass correlation coefficient = 0.69). Conclusion The ESAS-CS and ESAS-r-CS NRS versions are valid and reliable for measuring symptoms in this population of outpatients with advanced cancer. Although the ESAS-r-CS was preferred, patients favored the 24-hour time window of the ESAS-CS, which also may best characterize fluctuating symptoms. [ABSTRACT FROM AUTHOR]

Several recently published randomized controlled trials have demonstrated the benefits of early palliative care involvement for patients with advanced cancer. In the oncology outpatient setting, palliative care clinics are an ideal site for the provision of early, collaborative support, which can be maintained throughout the cancer trajectory. Despite this, access to ambulatory palliative care clinics is limited, even at tertiary cancer centres. Existing programs for outpatient palliative care are variable in scope and are not well described in the literature. We describe the development and expansion of an outpatient palliative care clinic at the Princess Margaret Cancer Centre, Toronto, Canada, demonstrating how the clinic functions at a local and regional level. This clinic served as the intervention for a recent large cluster-randomized trial of early palliative care. The model for this service can be adapted by other palliative care programs that aim to provide early, integrated oncology care. [ABSTRACT FROM AUTHOR]

Purpose: Satisfaction with care is important for quality assurance in oncology, but may differ between patients and caregivers. We aimed to assess satisfaction with cancer care in paired analyses of these groups, examine differences between them, and identify areas for potential intervention. Methods: Patients with advanced cancer and their caregivers were recruited from 24 medical oncology outpatient clinics. Satisfaction with care was measured using the FAMCARE (caregivers) and FAMCARE-Patient (patients) scales. Quality of life (QOL) was measured with the Caregiver QOL Index-Cancer (caregivers) and FACIT-Sp (patients). The paired t test assessed differences in overall satisfaction and individual scores. In addition, scores were dichotomized into satisfied versus not satisfied, and McNemar’s test was used to assess differences. Multivariable linear regression analyses assessed predictors of patient and caregiver satisfaction, respectively. Results: Satisfaction ratings in the 191 patient–caregiver pairs were high, but patients were more satisfied ( p = 0.02). Both groups were least satisfied with information regarding prognosis and pain management. Caregivers were significantly less satisfied than patients regarding coordination of care ( p = 0.001) and family inclusion in treatment/care decisions ( p < 0.0001). In both groups, higher education was associated with lower satisfaction ( p ≤ 0.01), while better QOL predicted greater satisfaction ( p < 0.0001). Conclusions: Communication regarding pain control and prognosis were identified as key areas for improvement. Caregivers seem to desire greater involvement in treatment decisions, though this must be balanced with patient autonomy. [ABSTRACT FROM AUTHOR]

In response to Canada's opioid crisis, national strategies and guidelines have been developed but primarily focus on opioid use for chronic noncancer pain. Despite the well-established utility of opioids in cancer care, and the growing emphasis on early palliative care, little attention has been paid to opioid risk in this population, where evidence increasingly shows a higher risk of opioid-related harms than was previously thought. The primary objective of this study was to assess oncology clinicians' attitudes, confidence, and practices in managing opioids in outpatients with cancer. This was explored using pilot-tested, profession-specific surveys for physicians/nurse practitioners, nurses and pharmacists. Descriptive analyses were conducted in aggregate and separately based on discipline. Univariate and multiple linear regression analyses were performed to explore relationships between confidence and practices within and across disciplines. The survey was distributed to approximately 400 clinicians in January 2019. Sixty-five responses (27 physicians/nurse practitioners, 31 nurses, 7 pharmacists) were received. Participants endorsed low confidence, differing attitudes, and limited and varied practice in managing and mitigating opioid risks in the cancer population. This study provides valuable insights into knowledge gaps and clinical practices of oncology healthcare professionals in managing opioids and mitigating associated risks for patients with cancer. [ABSTRACT FROM AUTHOR]

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22–39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance. [ABSTRACT FROM AUTHOR]

Purpose: Telehealth allows patients to maintain contact with healthcare providers without necessitating travel, and is becoming increasingly utilized. The purpose of this study is to describe the components of telehealth palliative care interventions for patients with advanced cancer before the COVID-19 pandemic; identify any intervention components associated with improvements in outcomes; and evaluate reporting of interventions. Methods: This scoping review was registered on the Open Science Framework. We searched 5 medical databases from inception to June 19, 2020. Inclusion criteria were: age ≥ 18, advanced cancer, asynchronous or synchronous telehealth intervention, and specialized palliative care interventions in any setting. We assessed the quality of intervention reporting using the Template for Intervention Description and Replication (TIDieR) checklist. Results: Twenty-three studies met the inclusion criteria: 15 (65%) quantitative (7 randomized controlled trials, 5 feasibility trials, 3 retrospective chart reviews); 4 (17%) mixed methods, and 4 (17%) qualitative. Most quantitative and mixed methods studies were conducted in North America (12/19, 63%), reported on hybrid (in-person and telehealth) interventions (9/19, 47%), and were delivered by nurses (12/19, 63%) in the home setting (14/19, 74%). In most studies that reported improvements in patient- or caregiver-reported outcomes, the content was psychoeducational and resulted in improvements for psychological symptoms. No study provided complete reporting on all 12 TIDieR checklist items. Conclusion: Telehealth studies are needed that reflect palliative care's mission to provide multidisciplinary team-based care that improves quality of life in diverse settings, and that provide detailed reporting of interventions. [ABSTRACT FROM AUTHOR]

Background Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. Methods We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and Cumulative Index to Nursing and Allied Health Literature databases from inception through June 2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning, and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). Results Of 12 193 references identified, 56 articles reporting on 49 trials involving 8554 caregivers were eligible for analysis; 16 (33%) targeted caregivers, 19 (39%) patient–caregiver dyads, and 14 (29%) patients and their families. At 1- to 3-month follow-up, interventions had a statistically significant effect on overall QOL (SMD = 0.24, 95% confidence interval [CI] = 0.10 to 0.39); I 2 = 52.0%), mental well-being (SMD = 0.14, 95% CI = 0.02 to 0.25; I 2 = 0.0%), anxiety (SMD = 0.27, 95% CI = 0.06 to 0.49; I 2 = 74.0%), and depression (SMD = 0.34, 95% CI = 0.16 to 0.52; I 2 = 64.4) compared with standard care. In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. Conclusions Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health. These data support the routine provision of interventions to improve well-being in caregivers of patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Early palliative care (EPC) is widely recommended but its implementation may be challenging. We conducted a qualitative analysis of Canadian palliative care physicians' opinions about conditions necessary to provide EPC. A survey assessing attitudes and opinions regarding EPC was distributed to physicians providing primary or specialized palliative care, as identified by the Canadian Society of Palliative Care Physicians. The survey included an optional final section for respondents' general comments; we screened these for relevance to our study aims and conducted a thematic analysis of relevant comments. Of 531 completed surveys, 129 (24%) respondents provided written comments, of whom 104 mentioned conditions they felt to be necessary to provide EPC. Four key themes were identified: 1) Clear delineation of roles of primary and specialized palliative care physicians —all physicians should be empowered to provide primary palliative care, with specialists providing additional support; 2) Shared care with needs-dependent referral —primary and specialized palliative care physicians should work collaboratively, with referral to specialized palliative care based on need rather than on prognosis; 3) Adequate resources to support primary palliative care —education, financial incentives, and collaboration with interdisciplinary team members such as nurses and specialized providers were specifically mentioned; 4) Addressing the misconception that palliative care equals end-of-life care —there was particular emphasis on education of both healthcare providers and the public. Changes are necessary at the level of palliative care referral systems, providers, resources, and policy to enable implementation of EPC. [ABSTRACT FROM AUTHOR]

The article reviews the book "The Helping Professional's Guide to End-of-Life Care: Practical Tools for Emotional, Social and Spiritual Support for the Dying" edited by E. Alessandra Strada.

Background: Family physicians' (FPs) long‐term relationships with their oncology patients position them ideally to provide primary palliative care, yet their involvement is variable. We examined perceptions of FP involvement among outpatients receiving palliative care at a cancer center and identified factors associated with this involvement. Methods: Patients with advanced cancer attending an oncology palliative care clinic (OPCC) completed a 25‐item survey. Eligible patients had seen an FP within 5 years. Binary multivariable logistic regression analyses were conducted to identify factors associated with (1) having seen an FP for palliative care within 6 months, and (2) having a scheduled/planned FP appointment. Results: Of 258 patients, 35.2% (89/253) had seen an FP for palliative care within the preceding 6 months, and 51.2% (130/254) had a scheduled/planned FP appointment. Shorter travel time to FP (odds ratio [OR] = 0.67, 95% confidence interval [CI] = 0.48–0.93, p = 0.02), the FP having a 24‐h support service (OR = 1.96, 95% CI = 1.02–3.76, p = 0.04), and a positive perception of FP's care (OR = 1.05, 95% CI = 1.01–1.09, p = 0.01) were associated with having seen the FP for palliative care. English as a first language (OR = 2.90, 95% CI = 1.04–8.11, p = 0.04) and greater ease contacting FP after hours (OR = 1.33, 95% CI = 1.08–1.64, p = 0.008) were positively associated, and female sex of patient (OR = 0.51, 95% CI = 0.30–0.87, p = 0.01) and travel time to FP (OR = 0.66, 95% CI = 0.47–0.93, p = 0.02) negatively associated with having a scheduled/planned FP appointment. Number of OPCC visits was not associated with either outcome. Conclusion: Most patients had not seen an FP for palliative care. Accessibility, availability, and equity are important factors to consider when planning interventions to encourage and facilitate access to FPs for palliative care. [ABSTRACT FROM AUTHOR]

Outpatient palliative care facilitates timely symptom management, psychosocial care and care planning. A growing number of cancer centers have either stand-alone or embedded outpatient palliative care clinics. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. One group advocates for stand-alone clinics, another for embedded, and the third group tries to find a balance. In the absence of evidence that directly compares the two models, factors such as cancer center size, palliative care team composition, clinic space availability, and financial considerations may drive the decision-making process at each institution. Stand-alone clinics may be more appropriate for larger academic cancer centers or palliative care programs with a more comprehensive interdisciplinary team, while embedded clinics may be more suited for smaller palliative care programs or community oncology programs to stimulate referrals. As outpatient clinic models continue to evolve, investigators need to document the referral and patient outcomes to inform practice. [ABSTRACT FROM AUTHOR]

Simple Summary: Ketamine has demonstrated rapid antidepressant effects, but has been minimally studied in cancer populations. We conducted an open-label trial evaluating ketamine for depression in patients with advanced cancer. Participants received three flexible doses of intranasal (IN) ketamine (50–150 mg) over a one-week period. Twenty participants were enrolled in the trial, receiving at least one dose of IN ketamine. We observed rapid, robust and partially sustained antidepressant effects with flexibly dosed IN ketamine with adequate safety and tolerability in individuals with moderate to severe depression comorbid with advanced cancer. Given these promising findings, larger, controlled trials are merited. Antidepressants require several weeks for the onset of action, a lag time that may exceed life expectancy in palliative care. Ketamine has demonstrated rapid antidepressant effects, but has been minimally studied in cancer and palliative care populations. Herein, the objective was to determine the feasibility, safety, tolerability and preliminary efficacy of intranasal racemic ketamine for major depressive disorder (MDD) in patients with advanced cancer. We conducted a single-arm, open-label phase II trial at the Princess Margaret Cancer Centre in Toronto, ON, Canada. Participants with advanced cancer with moderate to severe MDD received three flexible doses of intranasal (IN) ketamine (50–150 mg) over a one-week period. The primary efficacy outcome was an antidepressant response and remission rates as determined by the Montgomery–Åsberg Depression Rating Scale (MADRS) from baseline to the Day 8 primary endpoint. Twenty participants were enrolled in the trial, receiving at least one dose of IN ketamine, with fifteen participants receiving all three doses. The Day 8 antidepressant response (MADRS decreased by >50%) and remission (MADRS < 10 on Day 8) rates were high at 70% and 45%, respectively. Mean MADRS scores decreased significantly from baseline (mean MADRS of 31, standard deviation 7.6) to Day 8 (11 +/− 7.4) with an overall decrease of 20 points (p < 0.001). Antidepressant effects were partially sustained in the second week in the absence of additional ketamine doses, with a Day 14 mean MADRS score of 14 +/− 9.9. Common adverse effects included fatigue, dissociation, nausea, dysgeusia and headaches; almost all adverse effects were mild and transient, resolving within 2 h of each ketamine dose with one dropout related to adverse effects (negative dissociative episode). Given these promising findings, larger, controlled trials are merited. [ABSTRACT FROM AUTHOR]

Background: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. Aim: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. Design: Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7). Data sources: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. Results: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States (n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews (n = 33). Three main topics were identified: Physical symptom burden (n = 26, 51%), Psychological and social needs (n = 33, 65%), and end-of-life care (n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. Conclusion: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults. [ABSTRACT FROM AUTHOR]

Background: Early palliative care (EPC) improves the quality of life but may not be feasible for all patients with advanced cancer. Symptom screening has been suggested to triage patients for EPC, but scant evidence exists for this practice. Methods: We conducted a subgroup analysis of a cluster‐randomized controlled trial of EPC vs. standard oncology care according to patients' baseline symptom scores (high [>23] vs. low [≤23] Edmonton Symptom Assessment System Distress Score [ESAS SDS]). A linear mixed‐effects model was used to account for correlation within clusters, adjusting for the baseline outcome score and all covariates in the original trial. Results: Among the 461 participants, baseline symptom scores were high in 229 patients (127 intervention, 102 control) and low in 232 (101 intervention and 131 control). Among those with high baseline symptoms, there was improved quality of life in the EPC arm compared to controls at 4 months (adjusted difference in primary outcome of FACIT‐Sp change score [95% CI], 8.7 [2.8 to 14.5], p = 0.01; adjusted difference in QUAL‐E, 4.2 [0.9–7.5], p = 0.02); there was also improved satisfaction with care (6.9 [3.8–9.9], p = 0.001) and clinician‐patient interactions (−1.7 [−3.4 to −0.1], p = 0.04), but no significant difference in ESAS SDS (−5.6 [−12.7 to 1.4], p = 0.11). In the low baseline symptom group, there were no significant differences between arms for any outcomes. Conclusion: EPC improved quality of life, satisfaction with care, and clinician‐patient interactions only in those with high baseline symptoms. Symptom severity may be an appropriate criterion to trigger early referrals to palliative care. [ABSTRACT FROM AUTHOR]

Purpose: We investigated relationships between domains of quality of dying and death in patients with advanced cancer and their caregivers' bereavement outcomes and the moderating effect of patient age at death. Methods: Bereaved caregivers of deceased patients with advanced cancer who had participated in an early palliative care trial completed measures of grief (Texas Revised Inventory of Grief [TRIG]), complicated grief (Prolonged Grief Inventory [PG-13]), and depression (Center for Epidemiologic Studies-Depression [CESD-10]). They also completed the Quality of Dying and Death measure (QODD), which assesses patients' symptom control, preparation for death, connectedness with loved ones, and sense of peace with death. Results: A total of 157 bereaved caregivers completed the study. When patient age × QODD subscale interactions were included, greater death preparation was related to less grief at patient death (past TRIG: β = −.25, p =.04), less current grief (present TRIG: β = −.26, p =.03), less complicated grief (PG-13: β = −.37, p =.001), and less depression (CESD-10: β = −.35, p =.005). Greater symptom control was related to less current grief (present TRIG: β = −.27, p =.02), less complicated grief (PG-13: β = −.24, p =.03), and less depression (CESD-10: β = −.29, p =.01). Significant patient age × connectedness interaction effects for current grief (present TRIG: β =.30, p =.02) and complicated grief (PG-13: β =.29, p =.007) indicated that, with less connectedness, younger patient age at death was associated with greater caregiver grief. Conclusion: Better end-of-life death preparation and symptom control for patients with cancer may attenuate later caregiver grief and depression. Less connectedness between younger patients and their families may adversely affect caregiver grief. [ABSTRACT FROM AUTHOR]

Purpose: Guidelines recommend documentation of care preferences for patients with advanced cancer upon hospital admission. We assessed end-of-life outcomes for patients who did or did not have code status (CS) documented within 48 h of admission. Methods: This was a retrospective cohort study of patients who died on an inpatient oncology ward between January 2004 and February 2009. Primary end-of-life outcomes were 'code blues' and cardiopulmonary resuscitation (CPR) attempts; secondary outcomes included unsuccessful CPR attempts, intensive care unit (ICU), consultations, and ICU admissions. Using logistic regression, outcomes were compared between those with and without CS documentation ≤48 h from admission (full code or do-not-resuscitate), controlling for significant confounders. Results: The 336 patients had a median age of 61 years; 97 % had advanced cancer. The median time from admission to death was 12 days (range <1-197 days); 151 patients (45 %) had CS documentation ≤48 h from admission. Controlling for confounders of reason for admission and marital status, patients with CS documentation ≤48 h from admission had fewer 'code blues' (2 vs. 15 %; adjusted odds ratio (AOR) 0.12, 95 % confidence interval (CI) 0.02-0.43), CPR attempts (1 vs. 11 %; AOR 0.12, 95 % CI 0.01-0.51), unsuccessful CPR attempts (0 vs. 11 %), ICU consultations (9 vs. 30 %; AOR 0.19, 95 % CI 0.08-0.40) and ICU admissions (2 vs. 5 %; AOR 0.18, 95 %CI 0.02-0.85). Conclusions: In patients who died on an oncology ward, CS documentation within 48 h of admission was associated with less aggressive end-of-life care, regardless of the reason for admission. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community. Aim: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice. Design: Qualitative descriptive design using semi-structured interviews and thematic analysis Settings/participants: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario. Results: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death. Conclusion: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery. [ABSTRACT FROM AUTHOR]

Background: Assessing quality of life is essential for individuals with advanced cancer, but lengthy assessments can be burdensome. The authors investigated the psychometric characteristics of the FACT-G7, a 7-item quality-of-life measure derived from the Functional Assessment of Cancer Therapy-General (FACT-G) scale, in advanced cancer.Methods: Data were obtained from outpatients with advanced cancer who were enrolled in a randomized controlled trial of early palliative care. At baseline, 228 intervention participants and 233 control participants (N = 461) completed the FACT-G and measures of symptom severity, quality of life near the end of life, problematic medical communication, and satisfaction with care. Follow-up measures were administered monthly for 4 months.Results: The FACT-G7 showed good internal consistency (Cronbach α = .72-.80), and its single-factor structure was supported. It correlated strongly with the FACT-G total, physical, and functional indices and with symptom severity (absolute r = 0.73-0.92); more moderately with the FACT-G emotional index and with symptom impact and preparation for the end of life (r = .40-.71); and least with the FACT-G social/family index and with relationship with health care provider, life completion, problematic medical communication, and care satisfaction measures (absolute r = .26-.44). Eastern Cooperative Oncology Group performance status groups differed on FACT-G7 scores, as expected (all P < .001). Improvements in FACT-G7 scores in the intervention group compared with the control group at 3-month (P = .049) and 4-month (P = .034) follow-up supported responsiveness to change and somewhat greater sensitivity than the FACT-G scores.Conclusions: The FACT-G7 is a valid, brief measure particularly of the physical and functional facets of quality of life. It may enable rapid quality-of-life assessments in patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Purpose: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care."Methods: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.Results: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; > 90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (> 6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p = 0.02) and have a postgraduate degree (p = 0.02), and less likely to provide mainly cancer care (p = 0.03) and to agree that patients should stop chemotherapy before referral (p = 0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty.Conclusions: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care. [ABSTRACT FROM AUTHOR]

Background: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers. Aim: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision. Design: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. Setting/participants: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study. Results: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p < 0.001). Despite strongly favouring early palliative care, only half in each group agreed they had resources to deliver it; agreement was stronger among family physicians, those working on teams and those with greater availability of community and psychosocial support. Primary providers were more likely to agree that renaming the specialty 'supportive care' would increase patient comfort with early palliative care referral (47.4% vs 35.5%, p < 0.001). Conclusion: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care. [ABSTRACT FROM AUTHOR]

Objective: We investigated correspondence between symptom severity and symptom bothersomeness in patients with advanced cancer. Background: Symptom severity is commonly assessed in clinical cancer settings, but bothersomeness of these symptoms is less often measured. Methods: Participants with advanced cancer enrolled in a cluster-randomized trial of early palliative care completed the Edmonton Symptom Assessment System (ESAS) and the quality of life at the end of life (QUAL-E) measure as part of their baseline assessment. For each symptom, we examined the correspondence between the symptom being indicated as most severe on the ESAS and rated as most bothersome on the QUAL-E. Results: For the 386 patients who completed relevant sections of the ESAS and QUAL-E, tiredness (32.8%), sleep (23.8%), and appetite (20.2%) were most frequently rated as most severe, whereas pain (28.9%) and tiredness (24.3%) were most frequently indicated as most bothersome. The most bothersome and most severe symptom corresponded in 42%. Pain and/or tiredness were consistently among the top three most bothersome symptoms, whereas appetite was frequently rated the most severe symptom but was rarely perceived as the most bothersome. The probability that patients rating a symptom as most severe would also rate it as most bothersome was highest for pain (66%), nausea (58%), and tiredness (40%). Discussion: ESAS symptom severity does not necessarily indicate patients' most bothersome symptom; regardless of severity, pain and tiredness are most frequently perceived as most bothersome. Further research should investigate the clinical benefits of patients also indicating their three most bothersome ESAS symptoms. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer have an elevated risk of venous thromboembolism. Increasingly, patients are admitted to palliative care settings for brief admissions, with greater numbers of discharges (vs deaths) reported internationally. There is limited guidance around the use of thromboprophylaxis or incidence of venous thromboembolism for these patients. Aim: The aim of this study was to review the use of thromboprophylaxis as well as incidence of venous thromboembolism and bleeding in palliative care units or residential hospices for patients with advanced cancer. Design: A systematic review using Cochrane methods. Data sources: Medline, Embase and the Cochrane Library were searched up to 28 September 2018 along with a grey literature search; the reference lists of selected papers were hand-searched. Inclusion criteria were original papers assessing thromboprophylaxis use in palliative care units or residential hospices for adult inpatients with cancer. Two reviewers independently selected and appraised papers using a tool designed for disparate data. Heterogeneity in study design made a meta-analysis not possible. Results: A total of 11 full-text papers (9 quantitative and 2 qualitative) and 11 abstracts were included. Thromboprophylaxis use ranged between 4% and 53%; venous thromboembolism rates between 0.5% and 20%; and bleeding incidence was between 0.01% and 9.8%. Risk assessment tools were used infrequently and adherence to international thromboprophylaxis guidelines ranged between 5% and 71%. Physician opinions differed around the use of thromboprophylaxis; patients were largely accepting of thromboprophylaxis if it was offered. Conclusion: There is limited evidence around the optimal use of thromboprophylaxis for patients with advanced cancer admitted to palliative care settings. Although some patients may derive benefit, further research in this area is warranted. [ABSTRACT FROM AUTHOR]

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care. [ABSTRACT FROM AUTHOR]

Background: Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers. Objective: Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP). Design: Semistructured qualitative interviews were conducted with 61 bereaved caregivers. Subjects: Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures. Approach: In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data. Results: Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes “contact reflects caring,” “contact offers support,” and “contact facilitates closure” were prominent among those who were contacted. “Contact is a courtesy,” “contact is not always necessary,” and “caregiver-initiated contact” were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported. Conclusions: Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers. [ABSTRACT FROM AUTHOR]

Context: Performance status measures are increasingly completed by patients in outpatient cancer settings, but are not well validated for this use.Objectives: We assessed performance of a patient-reported functional status measure (PRFS, based on the Eastern Cooperative Oncology Group [ECOG]), compared with the physician-completed ECOG, in terms of agreement in ratings and prediction of survival.Methods: Patients and physicians independently completed five-point PRFS (lay version of ECOG) and ECOG measures on first consultation at an oncology palliative care clinic. We assessed agreement between PRFS and ECOG using weighted Kappa statistics, and used linear regression to determine factors associated with the difference between PRFS and ECOG ratings. We used the Kaplan-Meier method to estimate the patients' median survival, categorized by PRFS and ECOG, and assessed predictive accuracy of these measures using the C-statistic.Results: For the 949 patients, there was moderate agreement between PRFS and ECOG (weighted Kappa 0.32; 95% CI: 0.28-0.36). On average, patients' ratings of performance status were worse by 0.31 points (95% CI: 0.25-0.37, P < 0.0001); this tendency was greater for younger patients (P = 0.002) and those with worse symptoms (P < 0.0001). Both PRFS and ECOG scores correlated well with overall survival; the C-statistic was higher for the average of PRFS and ECOG scores (0.619) than when reported individually (0.596 and 0.604, respectively).Conclusion: Patients tend to rate their performance status worse than physicians, particularly if they are younger or have greater symptom burden. Prognostic ability of performance status could be improved by using the average of patients and physician scores. [ABSTRACT FROM AUTHOR]

Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services.Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study.Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death.Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care. [ABSTRACT FROM AUTHOR]

Background: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. Aim: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. Design: Qualitative grounded theory study. Setting: Tertiary comprehensive cancer centre. Participants: Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life. Results: The core category was 'living in the patient's world'. Five related themes were 'burden of illness and caregiving', 'assuming the caregiver role', 'renegotiating relationships', 'confronting mortality' and 'maintaining resilience'. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in 'deliberate ignorance' about the future, felt uncertain about how they would cope and lacked knowledge of available supports. Conclusions: Caregiver quality of life is influenced profoundly by the interaction with the patient and should be measured with specific questionnaires that include content related to confronting mortality and professional supports. This would improve delineation of quality of life for caregivers and allow greater sensitivity to change. Registration: clinicaltrials.gov NCT01248624 [ABSTRACT FROM AUTHOR]

Purpose Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. Methods This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. Results Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. Conclusion A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries. [ABSTRACT FROM AUTHOR]

Kajiwara et al. have commented on the potential significance of caregiver-patient relationships on caregiver bereavement and cited another study that demonstrated this relationship [[5]]. Research in this area is challenging as patient age and the patient-caregiver relationship will inevitably be correlated: older patients will be more likely to have children as caregivers, whereas younger adult patients will more likely have spouses as caregivers. References 1 Kajiwara K, Kako J, Kobayashi M, Noto H, Ogata A (2021) Caregiver bereavement outcomes in advanced cancer: associations with quality of death and patient age. [Extracted from the article]

Purpose: Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. Methods: This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. Results: Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. Conclusion: A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries. [ABSTRACT FROM AUTHOR]

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers.Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis.Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants' initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as "ongoing care" that improved their "quality of living" but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting.Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. [ABSTRACT FROM AUTHOR]

BACKGROUND: Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life. METHODS: The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0-2, and a clinical prognosis of 6-24 months. Quality of life (Functional Assessment of Chronic Illness Therapy--Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624. FINDINGS: 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI -0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (-1·70 [-5·26 to 1·87], p=0·33) or CARES-MIS (-0·66 [-2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. INTERPRETATION: Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. INSET: Panel: Research in context. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with cancer experience a high level of distress and have unique unmet palliative and supportive care needs. There is limited knowledge about the symptom burden, quality of life, and type of care that AYA patients receive. In 2017, a dedicated AYA-specialized palliative care clinic was established at Princess Margaret Cancer Centre in Canada, with a collaborative approach between palliative care and psychiatry. This study aims to describe the demographics and symptoms burden of AYA cancer patients who attended the integrated palliative care and psychiatry clinic, measure the impact of the clinic on AYAs' symptom control, and examine their end-of-life outcomes. Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients' medical charts, analyzed, and reported. Of the 69 patients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the highest scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1–32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an intensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning. [ABSTRACT FROM AUTHOR]