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Background: Palliative care specialists are experts in conducting advance care planning (ACP) but are a limited resource. Oncology nurses often have special relationships with their patients and thus may be poised to provide primary palliative care. We sought to determine the impact of a nurse-led primary palliative care intervention on ACP uptake among patients with advanced cancer. Methods: We performed a secondary analysis of a cluster randomized controlled trial examining the impact of nurse-based primary palliative care. In the parent trial, patients with advanced cancer received either monthly primary palliative care visits with trained nurses within their cancer center or standard care. Nurses in the intervention arm received special training in ACP. ACP uptake was assessed at enrollment and 3 months later evaluating (1) whether an end-of-life conversation (EOLC) occurred with one’s oncologist, and (2) completion of an advance directive (AD). Multivariable logistic regression tested differences in ACP uptake by treatment arm adjusted for age, religious importance, education, time with current oncologist, and performance status. Results: Of 672 patients enrolled, 182/336 (54%) patients in the intervention arm and 196/336 (58%) in the standard care arm lacked an EOLC at baseline and completed the 3-month assessment. Of those, 82/182 (45.1%) patients in the intervention arm and 29/196 (14.8%) in the standard care arm reported having an EOLC at 3 months (adjusted odds ratio, 5.28; 95% CI, 3.10–8.97; PPConclusions: Nurse-led primary palliative care increased ACP uptake among patients with advanced cancer. Training oncology nurses embedded within community cancer centers to provide primary palliative care may help improve ACP access.

ContextPalliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood.ObjectivesTo determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer.MethodsIn this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0-48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0-21; HADS-D, range 0-21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0-189).ResultsWe enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07-0.29, P=0.90), depression (adjusted mean difference -0.22, 95% CI -0.97-0.55, P=0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25-1.43, P=0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95-17.77, P=0.030).ConclusionCaregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.

PURPOSE: Stigma surrounding prescription opioids, or opioid stigma, is increasingly recognized as a barrier to effective and guideline-concordant cancer pain management. Patients with advanced cancer report high rates of pain and prescription opioid exposure, yet little is known about how opioid stigma may manifest in this population. METHODS: We conducted in-depth qualitative interviews with 20 patients with advanced cancer and 11 support providers between March 2020, and May 2021. We took a rigorous inductive, qualitative descriptive approach to characterize how opioid stigma manifests in the lives of patients with advanced cancer. RESULTS: Patients and their support providers described three primary manifestations of opioid stigma: (1) direct experiences with opioid stigma and discrimination in health care settings (eg, negative, stigmatizing interactions in pharmacies or a pain clinic); (2) concerns about opioid stigma affecting patient care in the future, or anticipated stigma; and (3) opioid-restricting attitudes and behaviors that may reflect internalized stigma and fear of addiction (eg, feelings of guilt). CONCLUSION: This qualitative study advances our understanding of opioid stigma manifestations in patients with advanced cancer, as well as coping strategies that patients may use to alleviate their unease (eg, minimizing prescription opioid use, changing clinicians, and distancing from perceptions of addiction). In recognition of the costs of undermanaged cancer pain, it is important to consider innovative treatment strategies to address opioid stigma and improve pain management for patients with advanced cancer. Future research should examine opportunities to build an effective, multilevel opioid stigma intervention targeting patients, clinicians, and health care systems.

Opioids are commonly used to relieve symptoms such as pain and dyspnea in people living with serious illness. In recent years, 36 states enacted limitations for opioid prescriptions to mitigate the impact of the opioid overdose crisis. Palliative care clinicians have been vocal about the unintended consequences of opioid policies, yet little is known about how state policies apply to opioid prescribing in non-cancer-related serious illness.To summarize current state-level limitations to opioid prescribing and exemptions relevant to people living with non-cancer-related serious illness.Investigators searched publicly available laws ("[state] + opioid legislation") to extract information on opioid prescribing and exemptions. Laws were examined for application to palliative care, hospice, non-cancer-related serious illness, and language about specific symptoms was documented when applicable (e.g., pain, dyspnea).Most state laws focused on acute pain and/or initial opioid prescriptions. Thirty-three of the thirty-six states with opioid-limiting legislation exempt situations applicable to people living with non-cancer-related serious illness. Three states did not have any exemptions relevant to people living with non-cancer-related serious illness.The results indicate that while most states recognize the importance of timely opioid access for palliation of pain, clinically relevant exemptions for people living with non-cancer-related serious illness may be lacking. When present, language describing palliative care, hospice, and terminal illness exemptions is often broad and may generate confusion between primary and specialty palliative care.

Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes.We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale).Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others' experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants' sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p .05) with a trend for cancer recurrence (p = .05).Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.

BACKGROUND: Each year, approximately one million older adults die in American ICUs or survive with significant functional impairment. Inadequate symptom management, surrogates’ psychological distress and inappropriate healthcare use are major concerns. Pioneering work by Dr. J. Randall Curtis paved the way for integrating palliative care (PC) specialists to address these needs, but convincing proof of efficacy has not yet been demonstrated. DESIGN: We will conduct a multicenter patient-randomized efficacy trial of integrated specialty PC (SPC) versus usual care for 500 high-risk ICU patients over age 60 and their surrogate decision-makers from five hospitals in Pennsylvania. INTERVENTION: The intervention will follow recommended best practices for inpatient PC consultation. Patients will receive care from a multidisciplinary SPC team within 24 hours of enrollment that continues until hospital discharge or death. SPC clinicians will meet with patients, families, and the ICU team every weekday. SPC and ICU clinicians will jointly participate in proactive family meetings according to a predefined schedule. Patients in the control arm will receive routine ICU care. OUTCOMES: Our primary outcome is patient-centeredness of care, measured using the modified Patient Perceived Patient-Centeredness of Care (PPPC) scale. Secondary outcomes include surrogates’ psychological symptom burden and health resource utilization. Other outcomes include patient survival, as well as interprofessional collaboration. We will also conduct prespecified subgroup analyses using variables such as PC needs, measured by the Needs of Social Nature, Existential Concerns, Symptoms, and Therapeutic Interaction (NEST) scale. CONCLUSIONS: This trial will provide robust evidence about the impact of integrating SPC with critical care on patient, family, and health system outcomes.

PURPOSE: Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer. METHODS: This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose. RESULTS: Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] = 1.15; 95% CI, 0.59 to 2.22; P = .684); 24.6% v 33.3% for treatment intent (aOR = 0.76; 95% CI, 0.44 to 1.27; P = .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR = 1.28; 95% CI, 0.81 to 2.00; P = .288). Results did not differ when accounting for variation in clinic sites or intervention dose. CONCLUSION: Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making.

Background Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients. Methods This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope. Results In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030). Conclusions The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations. Lay summary Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.

The American Society of Clinical Oncology (ASCO) recommends that outpatient specialty palliative care (OSPC) be offered within 8 weeks of an advanced cancer diagnosis. To meet the rising demand, there has been an increase in the availability of OSPC services at National Cancer Institute (NCI)-designated cancer centers; however, many OSPC referrals still occur late in the disease course.Using the Consolidated Framework for Implementation Research (CFIR), we evaluated facilitators and barriers to early OSPC implementation and associated clinic characteristics.We selected relevant CFIR constructs for inclusion in a survey that was distributed to the OSPC clinic leader at each NCI-designated cancer center. For each statement, respondents were instructed to rate the degree to which they agreed on a 5-point Likert scale. We used descriptive statistics to summarize responses to survey items and explore differences in barriers based on OSPC clinic size and maturity.Of 60 eligible sites, 40 (67%) completed the survey. The most commonly agreed upon barriers to early OSPC included inadequate number of OSPC providers (73%), lack of performance metric goals (65%), insufficient space to deliver early OSPC (58%), logistical challenges created by early OSPC (55%), and absence of formal interdisciplinary communication systems (53%). The most frequently reported barriers differed according to clinic size and maturity.Most barriers were modifiable in nature and related to the "Inner Setting" domain of the CFIR, which highlights the need for careful strategic planning by leadership when implementing early OSPC.

PURPOSE: Responses to the opioid epidemic in the United States, including efforts to monitor and limit prescriptions for noncancer pain, may be affecting patients with cancer. Oncologists' views on how the opioid epidemic may be influencing treatment of cancer-related pain are not well understood. METHODS: We conducted a multisite qualitative interview study with 26 oncologists from a mix of urban and rural practices in Western Pennsylvania. The interview guide asked about oncologists' views of and experiences in treating cancer-related pain in the context of the opioid epidemic. A multidisciplinary team conducted thematic analysis of interview transcripts to identify and refine themes related to challenges to safe and effective opioid prescribing for cancer-related pain and recommendations for improvement. RESULTS: Oncologists described three main challenges: (1) patients who receive opioids for cancer-related pain feel stigmatized by clinicians, pharmacists, and society; (2) patients with cancer-related pain fear becoming addicted, which affects their willingness to accept prescription opioids; and (3) guidelines for safe and effective opioid prescribing are often misinterpreted, leading to access issues. Suggested improvements included educational materials for patients and families, efforts to better inform prescribers and the public about safe and appropriate uses of opioids for cancer-related pain, and additional support from pain and/or palliative care specialists. CONCLUSION: Challenges to safe and effective opioid prescribing for cancer-related pain include opioid stigma and access barriers. Interventions that address opioid stigma and provide additional resources for clinicians navigating complex opioid prescribing guidelines may help to optimize cancer pain treatment.

ObjectivesFamily caregiver burden among older adults with advanced cancer remains poorly understood. We sought to (1) identify patient factors associated with caregiver burden and (2) examine how amount of time caregiving modifies these relationships.MethodsCross-sectional analysis of baseline data from a cluster-randomized palliative care intervention trial including patients with advanced cancer and their family caregivers, recruited from 17 oncology practices in Pennsylvania. Caregiver burden was measured using Zarit Burden Interview (ZBI-12; range 0-48). Patient factors included functional status (Eastern Cooperative Oncology Group), symptom burden (Edmonton Symptom Assessment Scale), anxiety and depression (Hospital Anxiety and Depression Scale), and quality of life (Functional Assessment of Chronic Illness Therapy - Palliative Care). Using adjusted multivariable regression, we analyzed (1) independent associations between patient factors and caregiver burden and (2) how weekly caregiving hours modified these relationships.ResultsAmong 441 patient-caregiver dyads, mean patient age was 70±10 and caregiver age was 62±13years. Most caregivers (59%) were patients' partners. Caregivers reported 44.5±53.5 average hours spent caregiving weekly; mean ZBI-12 scores were 10.3±7.3. Worse patient functional status (β=4.20, p&nbsp

The prevalence of obesity has grown in the US over the decades. The temporal trends of body mass index categories in the last two years of life are poorly understood.To describe the trends in body mass categories in the last two years of life over the past two decades controlling for other demographic changes.We performed a cross-sectional study of prospectively collected survey data from the nationally representative Health and Retirement Study (HRS) among decedents who died between 1998 and 2018. We categorized BMI into five categories and calculated the proportion of decedents with each BMI category during each four epochs (1998-2003, 2004-2008, 2009-2013, 2014-2018). We examined trends in regression models with survey wave groupings modeled as an orthogonal polynomial and adjusted for factors commonly associated with BMI: sex, age, race, ethnicity, education, and tobacco use.The analytic cohort included 14,797 decedents. From 1998-2003 to 2014-2018 time periods, those categorized as having mild-to-moderate obesity in the last two years of life increased from 12.4% to 14.8% (linear trend P0.001), a 19% increase. Severe obesity increased from 1.9% to 4.3%, a 126% increase (linear trend P0.001). Underweight decreased from 9.9% to 5.9%, a 40% decrease (linear trend P0.001), adjusted for demographic factors. Adjusted quadratic temporal trends for BMI category were nonsignificant, except for in mild-to-moderate obesity.Severe obesity has increased greatly while underweight has decreased. As obesity increases in the final years of life, it is critical to assess how the existing and future palliative services and end of life care system address body size and weight.

Palliative care clinicians display less burnout than oncology clinicians. Little is known about the impact of providing both oncology care and primary palliative care in the same setting.The aim was to determine whether nurses providing primary palliative care in addition to oncology care would experience less burnout over time than nurses providing oncology care only.The authors performed secondary analysis of the CONNECT study. Three groups of nurses were evaluated: primary palliative care, non-primary palliative care, and standard care. On study enrollment and after one year, nurses completed the Maslach Burnout Inventory. Multivariable regression analyses were performed to test differences in follow-up burnout scores between groups.Overall burnout rates were low at enrollment for all groups. There were no differences in burnout scores at one year between nurses who provided palliative care and nurses in the other two groups.nbsp.

Women with advanced cancer experience significant barriers to achieving high-quality care and maximizing their physical and emotional health. Our novel serious game, Strong Together, aims to teach women with advanced cancer self-advocacy skills needed to improve their symptom burden, quality of life, and patient-centered care.This is a single-center, multi-site randomized clinical trial of the Strong Together intervention among 336 women within three months of an advanced breast or gynecologic cancer diagnosis. Randomization occurs to the 3-month Strong Together serious game or enhanced care as usual group. The aims are to: (1) evaluate the effects of the intervention on patient self-advocacy (primary outcome); (2) evaluate the effects of the intervention on quality of life, symptom burden, and patient-centered care (secondary outcomes); and (3) evaluate the behavioral and game mechanisms that influence the efficacy of the intervention.female, age ≥ 18 years; diagnosis of advanced breast or gynecologic cancer within the past 3 months; Eastern Cooperative Oncology Group score of 0-2; English literacy; and ≥ 6-month life expectancy. Patient-reported outcome measures are collected at baseline, 3-months, and 6-months.This protocol is the first large-scale intervention aimed at promoting self-advocacy in women with advanced cancer. Understanding the ability of serious games to impact patient outcomes provides critical information for researchers, clinicians, and stakeholders aiming to improve patient-centered care.NCT04813276.

OBJECTIVE: Patient–oncologist therapeutic alliance is a foundation of quality cancer care, although there is limited research demonstrating its relationship with patient outcomes. We investigated the relationship between therapeutic alliance and patient quality of life with a secondary goal of determining whether the association varied by patients’ baseline level of psychological distress. METHODS: Cross-sectional analysis of baseline data from a randomized clinical trial of 672 patients with advanced cancer participating in a primary palliative care intervention trial. Patients completed baseline self-reported measures of therapeutic alliance (The Human Connection Scale, range: 16–64), overall quality of life (Functional Assessment of Cancer Therapy—Palliative Care, range: 0–184), and psychological distress (Hospital Anxiety and Depression Scale, range: 0–42). First, we determined the relationship between therapeutic alliance and quality of life using multivariable regression adjusting for confounders. We then examined if psychological distress was an effect modifier in this relationship by adding interaction effects of depression and anxiety symptoms on therapeutic alliance into the regression model. RESULTS: Patients reported high levels of therapeutic alliance (56.4 ± 7.4) and moderate quality of life (130.3 ± 25.5). Stronger therapeutic alliance was associated with better quality of life after adjusting for other confounding factors (β = 3.7, 95% confidence interval = 2.1, 5.3, p < 0.01). The relationship between therapeutic alliance and quality of life was generally consistent regardless of psychological distress. CONCLUSIONS: Collaborative, trusting relationships between patients with advanced cancer and their oncologists are associated with better patient quality of life. Future research should investigate the causal, longitudinal nature of these relationships.

PURPOSE: Providers have cited fear of taking away hope from patients as one of the principal reasons for deferring advance care planning (ACP). However, research is lacking on the relationship between ACP and hope. We sought to investigate the potential association between ACP and hope in advanced cancer. METHODS: This is a cross-sectional analysis of baseline data from a primary palliative care intervention trial. All patients had advanced solid cancers. Three domains of ACP were measured using validated questions to assess discussion with oncologists about end-of-life (EOL) planning, selection of a surrogate decision maker, and completion of an advance directive. Hope was measured using the Hearth Hope Index (HHI). Multivariable regression was performed, adjusting for variables associated with hope or ACP. RESULTS: A total of 672 patients were included in this analysis. The mean age was 69.3 ± 10.2 years; 54% were female, and 94% were White. Twenty percent of patients (132 of 661) reported having a discussion about EOL planning, 51% (342 of 668) reported completing an advance directive, and 85% (565 of 666) had chosen a surrogate. There was no difference in hope between patients who had and had not had an EOL discussion (adjusted mean difference in HHI, 0.55; P = .181 for adjusted regression), chosen a surrogate (adjusted HHI difference, 0.31; P = .512), or completed an advance directive (adjusted HHI difference, 0.11; P = .752). CONCLUSION: In this study, hope was equivalent among patients who had or had not completed 3 important domains of ACP. These findings do not support concerns that ACP is associated with decreased hope for patients with advanced cancer.

Background: This analysis describes associations between area deprivation and patient-reported outcomes among patients with advanced cancer. Methods: This is a cross-sectional analysis of baseline data from a multisite primary palliative care intervention trial. Participants were adult patients with advanced cancer. Patient-level area deprivation scores were calculated using the Area Deprivation Index (ADI). Quality of life and symptom burden were measured. Uni- and multivariate regressions estimated associations between area deprivation and outcomes of interest. Results: Among 672 patients, ∼0.5 (54%) were women and most (94%) were Caucasian. Mean age was 69.3±10.2 years. Lung (36%), breast (13%), and colon (10%) were the most common malignancies. Mean ADI was 64.0, scale of 1 (low)–100 (high). In unadjusted univariate analysis, Functional Assessment of Cancer Therapy—Palliative (p=0.002), Edmonton Symptom Assessment Scale (p=0.025) and the Hospital Anxiety and Depression Scale anxiety (p=0.003) and depression (p=0.029) scores were significantly associated with residence in more deprived areas (p=0.003). In multivariate analysis, controlling for patient-level factors, living in more deprived areas was associated with more anxiety (p=0.019). Conclusion: Higher ADI was associated with higher levels of anxiety among patients with advanced cancer. Geographic information could assist clinicians with providing geographically influenced social support strategies.

Purpose Patients with advanced cancer experience many complicated situations which can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy intervention Strong Together. Methods This was a qualitative cross-sectional descriptive among women receiving cancer care at an academic cancer center within three months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one interviews after the three-month intervention and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze interview transcripts and notes and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the serious game intervention. Results Participants (N = 40) reported that the Strong Together serious game was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included: seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters. Conclusion This study demonstrates that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.

Purpose: Primary Palliative Care (PPC) interventions are needed to address unmet symptom needs within standard oncology care. We designed an oncology nurse-led PPC intervention using shared care planning to facilitate patient engagement. This analysis examines the prevalence and severity of symptoms reported by patients and how symptoms were addressed on shared care plans.Methods: Secondary analysis of a cluster randomized PPC intervention trial. Adult patients with metastatic solid tumors whose oncologist ‘would not be surprised if the patient died within a year’ were included. Twenty-three oncology nurses received PPC training and conducted up to three monthly visits with patients. Symptom prevalence and severity were assessed prior to each visit using the Edmonton Symptom Assessment Scale (ESAS; 9 symptoms ranked 1-10 with scores ≥4 indicating moderate severity). Nurses collaboratively developed treatment strategies with patients, targeting the most bothersome symptoms for improvement.Results: Among 571 nurse-led PPC visits with 235 patients, the most prevalent and severe symptoms were tiredness (reported at 86% of visits; ESAS ≥4 in 55% of visits), low sense of well-being (78%; ESAS ≥4 in 38%), and poor appetite (69%; ESAS ≥4 in 42%). Moderately severe symptoms were addressed on shared care plans ranging from 4% (drowsiness) to 35% (tiredness) of the time. Symptom management plans developed by PPC-trained oncology nurses primarily focused on non-pharmaceutical interventions (70%) compared to pharmaceutical interventions (30%). Conclusion: The symptoms that patients report most frequently and as most severe on shared care plans were addressed less frequently than expected. Further research is needed to understand how primary palliative care interventions can be designed to more effectively target and improve bothersome symptoms for patients with advanced cancer.

Background: Investigators have tested interventions delivered by specialty palliative care (SPC) clinicians, or by clinicians without palliative care specialization (primary palliative care, PPC). Objective: To compare the characteristics and outcomes of randomized clinical trials (RCTs) of SPC and PPC interventions. Design: Systematic review secondary analysis. Setting/Subjects: RCTs of palliative care interventions. Measurements: Interventions were classified SPC if delivered by palliative care board-certified or subspecialty trained clinicians, or those with extensive clinical experience; all others were PPC. We abstracted data for each intervention: delivery setting, delivery clinicians, outcomes measured, trial results, and Cochrane's Risk of Bias. We conducted narrative synthesis for quality of life, symptom burden, and survival. Results: Of 43 RCTs, 27 tested SPC and 16 tested PPC interventions. SPC interventions were more comprehensive (4.2 elements of palliative care vs. 3.1 in PPC, p = 0.02). SPC interventions were delivered in inpatient (44%) or outpatient settings (52%) by specialty physicians (44%) and nurses (44%); PPC interventions were delivered in inpatient (38%) and home settings (38%) by nurses (75%). PPC trials were more often of high risk of bias than SPC trials. Improvements were demonstrated on quality of life by SPC and PPC trials and on physical symptoms by SPC trials. Conclusions: Compared to PPC, SPC interventions were more comprehensive, were more often delivered in clinical settings, and demonstrated stronger evidence for improving physical symptoms. In the face of SPC workforce limitations, PPC interventions should be tested in more trials with low risk of bias, and may effectively meet some palliative care needs.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families' spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

Background. Patient comprehension is fundamental to valid informed consent. Current practices often result in inadequate patient comprehension. Purpose. An updated review to evaluate the characteristics and outcomes of interventions to improve patient comprehension in clinical informed consent. Data Sources. Systematic searches of MEDLINE and EMBASE (2008–2018). Study Selection. We included randomized and nonrandomized controlled trials evaluating interventions to improve patient comprehension in clinical informed consent. Data Extraction. Reviewers independently abstracted data using a standardized form, comparing all results and resolving disagreements by consensus. Data Synthesis. Fifty-two studies of 60 interventions met inclusion criteria. Compared with standard informed consent, a statistically significant improvement in patient comprehension was seen with 43% (6/14) of written interventions, 56% (15/27) of audiovisual interventions, 67% (2/3) of multicomponent interventions, 85% (11/13) of interactive digital interventions, and 100% (3/3) of verbal discussion with test/feedback or teach-back interventions. Eighty-five percent of studies (44/52) evaluated patients’ understanding of risks, 69% (41/52) general knowledge about the procedure, 35% (18/52) understanding of benefits, and 31% (16/52) understanding of alternatives. Participants’ education level was reported heterogeneously, and only 8% (4/52) of studies examined effects according to health literacy. Most studies (79%, 41/52) did not specify participants’ race/ethnicity. Limitations. Variation in interventions and outcome measures precluded conduct of a meta-analysis or calculation of mean effect size. Control group processes were variable and inconsistently characterized. Nearly half of studies (44%, 23/52) had a high risk of bias for the patient comprehension outcome. Conclusions. Interventions to improve patient comprehension in informed consent are heterogeneous. Interactive interventions, particularly with test/feedback or teach-back components, appear superior. Future research should emphasize all key elements of informed consent and explore effects among vulnerable populations.

Importance Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services. Objective To assess the effect of CONNECT (Care Management by Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes. Design, setting, and participants This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle. Interventions The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care. Main outcomes and measures The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale [HADS]: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted. Results A total of 672 patients were enrolled (mean [SD] age, 69.3 [10.2] years; 360 women [53.6%]). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 [28.2] vs 134.1 [28.1]; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 [16.6] vs 24.0 [16.1]; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 [3.4] vs 4.8 [3.7], adjusted mean difference, -0.08 [95% CI, -0.71 to 0.57], P = .82; HADS anxiety subscale score: 5.7 [3.9] vs 5.4 [4.2], adjusted mean difference, -0.31 [95% CI, -0.96 to 0.33], P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention. Conclusions and relevance This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists. Trial registration ClinicalTrials.gov Identifier: NCT02712229.

219 Background: Patients with prostate cancer (PC) have high rates of depression (15-20%), which is associated with worse oncologic outcomes. The PHQ-9 is commonly used in depression screening, but men with depression may present differently than women, and male-specific screening tools such as the Gotland Male Depression Scale (GMDS) have also been developed and validated. The use of supportive care services in men with PC and depression is not well-described. Methods: Men with ≥1 Urology or Medical Oncology clinic visit for PC in the prior 6 months were emailed the PHQ-9 and GMDS every 60 days. Men who screened positive (score ≥10 on PHQ-9 or ≥13 on GMDS, consistent with moderate to severe depression) were contacted by phone to discuss the positive screen; during that conversation patients were offered a referral to an oncology social worker for a formal needs assessment and connection to supportive care services. Patient characteristics and use of supportive care services (palliative care, psychiatry, counseling, support groups, or spiritual health) at baseline and as a result of study screening were collected by survey and chart review. Results: Between 6/2021-12/2021, 201 men enrolled (Table). 184 completed ≥2 screens with mean follow-up 6.5 months (SD 1.3). 31 men (15.4%) had ≥1 positive PHQ-9 screen and 11 (5.5%) had ≥1 positive GMDS screen, 9 of whom also screened positive on the PHQ-9. Of the 33 men offered clinical social work referrals based on PHQ-9 or GMDS screening, 12 (36%) initially accepted and 7 (21%) ultimately met with social work. Of these 7 men, two ultimately received ongoing supportive counseling from social work, two were referred to support groups or peers in the community, and one was referred to financial services; the remaining two men were not followed longitudinally or referred to any services by the social worker, but were given the option to re-contact the social worker as needed. For the two patients who screened positive on the GMDS but not the PHQ-9, one declined social work referral, and one initially accepted but never scheduled an appointment. Conclusions: Use of supportive care services in men with PC was low, including when services were actively offered as a result of depression screening. Beyond the PHQ-9, the GMDS did not identify any men who engaged in supportive care services. More work is needed to optimally identify men with PC who may benefit from supportive care services and barriers to use.[Table: see text]

Background: Pain and opioid management are core ambulatory palliative care skills. Existing literature on how to manage opioid misuse/use disorder excludes patients found in palliative care settings, such as individuals with serious illness or those at the end of life. Objectives: We conducted an exploratory study to: (1) Identify the challenges palliative care clinicians face when prescribing opioids in ambulatory settings and (2) explore factors that affect opioid decision-making. Methods: We recruited palliative care clinicians who prescribe opioids in ambulatory settings, which included open-ended questions and was conducted online. Results were analyzed qualitatively using a content analysis-based approach. Results: Eighty-three palliative care clinicians (mostly MDs/DOs) participated. Challenges faced when prescribing opioids included clinician differences in approach to care (eg, transitioning from another clinician with more permissive opioid prescribing), medication access (eg, inadequate pharmacy supply), resource constraints (eg, access to mental health and addiction expertise), managing problems outside the typical palliative care scope (eg addiction). Participants also discussed factors that influenced their opioid prescribing decisions, such as opioid-related harms and risks that they need to weigh; they also spoke about the necessity of considering other factors like the patient’s environment, disease, treatment, and prognosis. Conclusion: This study highlights the challenge of opioid management in patients with serious illness, particularly when misuse or substance use disorder is present, and suggests areas for future research focus. Our next step will be to establish consensus on approaches to opioid prescribing decision-making and policy in seriously ill patients presenting to ambulatory palliative care.

Background: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare. Objective: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services. Design: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation. Results: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC. Conclusions: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.

Background: In 2016, Kavalieratos and colleagues performed a systematic review of randomized clinical trials (RCTs) of palliative care (PC) interventions. The majority of RCTs included focused on oncology, with fewer in heart failure (HF). Cancer patients' often predictable decline differs from the variable illness trajectories of HF; however, both groups experience similar palliative needs, and accordingly, PC in HF continues to grow. Objective: To investigate if PC interventions differ between cancer and HF patients. Design: In this secondary analysis, we compare PC interventions for cancer and HF patients evaluated in the 2016 systematic review. Settings/Subjects: We included a total of 25 trials, 19 of which included 3730 cancer patients, and 6 of which included 1049 HF patients (mean age, 67 years). Measurements: We compared the following five characteristics among included trials: PC domains addressed, duration, location, provider specialization, and measured outcomes. Results: The content of the cancer and HF interventions was similar. HF interventions tended to include more home-based (50% vs. 37%) and specialty PC interventions (67% vs. 47%), although these results did not reach statistical significance. Both cancer and HF interventions favored longer durations (i.e., more than one month; 79% and 67%). No HF intervention RCTs included caregiver outcomes, whereas 32% of cancer interventions did. Conclusions: There were no substantial differences in content of cancer and HF interventions, although the latter tended to be delivered by PC specialists at home. There is a need for scalable interventions that incorporate the needs and preferences of individual patients, regardless of diagnosis.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children. However, as the prevalence and long-term survival of CMC increases with medical advancements, the demand for pediatric palliative care will likely exceed the capacity of current and future pediatric palliative care specialists. Therefore, alternative strategies to ensure access to essential aspects of palliative care must be considered. This article focuses on why and how high-quality palliative care should be integrated into the patient- and family-centered medical home, the ideal care delivery model for CMC and their families. We first discuss how palliative care principles naturally align with and complement the goals of the CMC medical home. Next, we detail what actions pediatric palliative care specialists can take to best support the CMC medical home as "medical neighbors." Lastly, we describe the fundamental aspects of pediatric palliative care that all clinicians caring for CMC should be able to provide, referred to as "primary pediatric palliative care." (PsycINFO Database Record (c) 2019 APA, all rights reserved).

BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients “accumulate” medications to treat and prevent multiple diseases. OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month–1 year). DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation. PARTICIPANTS: Adults with advanced, life-limiting illness. MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0–90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0–10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL. KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took ≥ 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p

Context Chronic pain, or pain lasting more than three months, is common among cancer survivors, who are often prescribed long-term opioid therapy (LTOT). Objective Our objective was to explore palliative care providers' experiences with managing chronic pain in cancer survivors prescribed LTOT, specifically in ambulatory palliative care settings, and their strategies for overcoming challenges. Methods We recruited providers through leading national palliative care organizations who manage chronic pain in cancer survivors. Asked to consider only cancer survivors with chronic pain when responding, participants completed an online survey that included questions about use of opioid risk mitigation tools, confidence in addressing opioid misuse behaviors and discussing/recommending management approaches, and access to addiction treatment. Results Of 157 participants, most were physicians (83%) or nurse practitioners (15%). Most reported using opioid risk mitigation tools such as urine drug testing (71%), opioid treatment agreements (85%), and practitioner database monitoring programs (94%). Participants were confident (7–8/10) managing the most commonly encountered opioid misuse behaviors (missing appointments, marijuana use, and using more opioids than prescribed) and in their ability to recommend nonpharmacologic and nonopioid pharmacologic treatments for chronic pain (10/10). They were least confident prescribing naloxone or managing addiction (5/10); only 27% reported having training or systems in place to address addiction. Only 13% had a waiver to prescribe buprenorphine. Conclusion Palliative care providers are comfortable with many aspects of managing chronic pain in cancer survivors on LTOT, although challenges persist, including the lack of systems-based approaches and training in addiction treatment.

PURPOSE: The proportion of patients with advanced cancer who receive outpatient specialty palliative care (OSPC) is as low as 2.0%. Improved understanding of the system-level factors influencing use of OSPC could inform adaptations to the delivery of palliative care to maximize access. We examined associations between OSPC use among patients with advanced solid tumors and oncology-OSPC clinic colocation and patient travel time to an OSPC clinic. PATIENTS AND METHODS: We conducted a retrospective cohort study of patients with advanced solid tumors receiving oncologic treatment between January 1 and December 31, 2016, within a comprehensive cancer center network with well-established, oncology-specific OSPC clinics. Multivariable logistic regression analysis was used to evaluate the associations of clinic colocation and geographic access with OSPC use. RESULTS: Of 9,485 patients with advanced solid tumors, 478 (5.0%) received OSPC services in 2016. After controlling for age, sex, marital status, cancer type, insurance, treatment intent, and illness severity, patients whose oncologist practices were colocated with OSPC clinics were more likely to use OSPC (odds ratio [OR], 19.2; 95% CI, 14.1 to 26.2). Compared with patients who lived > 90 minutes from an OSPC clinic, patients with travel times of < 30 minutes (OR, 3.2; 95% CI, 2.2 to 4.6) and 31 to 60 minutes (OR, 2.4; 95% CI, 1.6 to 3.6) were also more likely to use OSPC. CONCLUSION: Among patients with advanced solid tumors, colocation of oncology and OSPC clinics and shorter patient travel time were associated with greater odds of using OSPC. Future efforts to increase OSPC use in this population should consider clinic colocation and travel burden.