Fabrication in a study about honesty: A lost episode of columbo illustrating how forensic statistics is performed.

The three steps of a typical forensic statistical analysis are (1) verify that the raw data file is correct; (2) verify that the statistical analysis file derived from the raw data file is correct; and (3) verify that the statistical analyses are appropriate. We illustrate applying these three steps to a manuscript which was subsequently retracted, focusing on step 1. In the absence of an external source for comparison, criteria for assessing the raw data file were internal consistency and plausibility. A forensic statistical analysis isn't like a murder mystery, and it many circumstances discovery of a mechanism for falsification or fabrication might not be realistic.

Needles in a Haystack: Finding Qualitative and Quantitative Collaborators in Academic Medical Centers.

Translational research is a data-driven process that involves transforming scientific laboratory- and clinic-based discoveries into products and activities with real-world impact to improve individual and population health. Successful execution of translational research requires collaboration between clinical and translational science researchers, who have expertise in a wide variety of domains across the field of medicine, and qualitative and quantitative scientists, who have specialized methodologic expertise across diverse methodologic domains. While many institutions are working to build networks of these specialists, a formalized process is needed to help researchers navigate the network to find the best match and to track the navigation process to evaluate an institution's unmet collaborative needs. In 2018, a novel analytic resource navigation process was developed at Duke University to connect potential collaborators, leverage resources, and foster a community of researchers and scientists. This analytic resource navigation process can be readily adopted by other academic medical centers. The process relies on navigators with broad qualitative and quantitative methodologic knowledge, strong communication and leadership skills, and extensive collaborative experience. The essential elements of the analytic resource navigation process are as follows: (1) strong institutional knowledge of methodologic expertise and access to analytic resources, (2) deep understanding of research needs and methodologic expertise, (3) education of researchers on the role of qualitative and quantitative scientists in the research project, and (4) ongoing evaluation of the analytic resource navigation process to inform improvements. Navigators help researchers determine the type of expertise needed, search the institution to find potential collaborators with that expertise, and document the process to evaluate unmet needs. Although the navigation process can create a basis for an effective solution, some challenges remain, such as having resources to train navigators, comprehensively identifying all potential collaborators, and keeping updated information about resources as methodologists join and leave the institution.

Index Symptoms and Prognosis Awareness of Patients With Pancreatic Cancer: A Multi-Site Palliative Care Collaborative.

BACKGROUND: Pancreatic cancer has a poor 5-year survival and carries significant morbidity. Pain is a commonly studied symptom in pancreatic cancer; however, few studies examine the frequency of multiple patient-reported symptoms. Our aim is to ascertain patient-reported symptom burden at initial consultation with a palliative care provider and compare patient prognostic awareness to provider estimation of prognosis. METHODS: Data were extracted from the standardized Quality Data Collection Tool (QDACT). Adults with pancreatic cancer seen by a palliative care provider were included. Descriptive statistics were used to describe demographic features, symptom prevalence and burden, as well as assess patient prognosis awareness defined by congruence or incongruence with provider estimated prognosis. RESULTS: 285 patients were included in our analysis. The average age was 68 years (SD: 12.4), 87.2% were white, 50% male. The mean number of moderate/severe symptoms was 2.6 (SD: 2) out of 9 symptoms. Tiredness (66.7%), appetite (64.5%) and pain (46.2%) had the highest rates of moderate/severe symptom burden. Patients with a prognosis of 1-6 months had the lowest proportion of congruence with provider estimation (56.5%). CONCLUSION: Our study suggests targets to improve patient-centered care of pancreatic cancer. Patients commonly have multiple symptoms that are moderate/severe at time of palliative care referral. While pain has been well-reported, tiredness and decreased appetite are more prevalent at initial visit. This emphasizes the importance of assessing multiple symptoms and working closely with palliative care for early referral. Overall, one third of patient prognosis estimates differed from the provider assessment of prognosis. Our data support the importance of early referral to palliative care to manage symptoms and better prepare patients for end-of-life care.

Hybrid-delivered cognitive behavioral symptom management and activity coaching intervention for patients undergoing hematopoietic stem cell transplant: Findings from intervention development and a pilot randomized trial.

OBJECTIVE: Develop and pilot test a mobile health (mHealth) cognitive behavioral coping skills training and activity coaching protocol (HCT Symptoms and Steps) for hematopoietic stem cell transplant (HCT) patients. DESIGN: Two-phase, mixed methods study. SAMPLE: HCT patients and healthcare providers. METHODS: Phase I was patient (n = 5) and provider (n = 1) focus groups and user testing (N = 5) to develop the HCT Symptoms and Steps protocol. Phase II was a pilot randomized trial (N = 40) to evaluate feasibility, acceptability, and pre-to-post outcomes (e.g., physical disability, pain, fatigue, distress, physical activity, symptom self-efficacy) compared to an education control. FINDINGS: Qualitative feedback on symptoms, recruitment strategies, coping skills, and mHealth components (e.g., Fitbit, mobile app) were integrated into the protocol. HCT Symptoms and Steps were feasible and acceptable. Pre-post changes suggest physical disability and activity improved while symptoms (e.g., fatigue, distress) decreased. CONCLUSIONS: HCT Symptoms and Steps have strong feasibility and acceptability and shows promise for benefits. Larger, fully-powered randomized trials are needed to examine intervention efficacy. IMPLICATIONS: HCT Symptoms and Steps may reduce physical disability and improve health outcomes post-transplant. CLINICAL TRIAL REGISTRATION NUMBER: NCT03859765.

Experiential Learning Methods for Biostatistics Students: A Model for Embedding Student Interns in Academic Health Centers.

This manuscript describes an experiential learning program for future collaborative biostatisticians (CBs) developed within an academic medical center. The program is a collaborative effort between the Biostatistics, Epidemiology, and Research Design (BERD) Methods Core and the Master of Biostatistics (MB) program, both housed in the Department of Biostatistics and Bioinformatics at Duke University School of Medicine and supported in partnership with the Duke Clinical and Translational Science Institute. To date, the BERD Core Training and Internship Program (BCTIP) has formally trained over 80 students to work on collaborative teams that are integrated throughout the Duke School of Medicine. This manuscript focuses on the setting for the training program, the experiential learning model on which it is based, the structure of the program, and lessons learned to date.

Does Cancer Treatment-Related Financial Distress Worsen Over Time?

BACKGROUND Patients with cancer are at risk for both objective and subjective financial distress. Financial distress during treatment is adversely associated with physical and mental well-being. Little is known about whether patients' subjective financial distress changes during the course of their treatment.method This is a cross-sectional study of insured adults with solid tumors on anti-cancer therapy for ≥1 month, surveyed at a referral center and three rural oncology clinics. The goal was to investigate how financial distress varies depending on where patients are in the course of cancer therapy. Financial distress (FD) was assessed via a validated measure; out-of-pocket (OOP) costs were estimated and medical records were reviewed for disease/treatment data. Logistic regression was used to evaluate the potential association between treatment length and financial distress.RESULTS Among 300 participants (86% response rate), median age was 60 years (range 27-91), 52.3% were male, 78.3% had stage IV cancer or metastatic recurrence, 36.7% were retired, and 56% had private insurance. Median income was $60,000/year and median OOP costs including insurance premiums were $592/month. Median FD score (7.4/10, SD 2.5) corresponded to low FD with 16.3% reporting high/overwhelming distress. Treatment duration was not associated with the odds of experiencing high/overwhelming FD in single-predictor (OR = 1.01, CI [.93, 1.09], P = .86) or multiple predictor regression models (OR = .98, CI [.86, 1.12], P = .79). Treatment duration was not correlated with FD as a continuous variable (P = .92).LIMITATIONS This study is limited by its cross-sectional design and generalizability to patients with early-stage cancer and those being treated outside of a major referral center.CONCLUSION Severity of cancer treatment-related financial distress did not correlate with time on treatment, indicating that patients are at risk for FD throughout the treatment continuum. Screening for and addressing financial distress should occur throughout the course of cancer therapy.

Associations of Patient Characteristics and Care Setting with Complexity of Specialty Palliative Care Visits.

Background: Information routinely collected during a palliative care consultation request may help predict the level of complexity of that patient encounter. Objectives: We examined whether patient and consultation characteristics, as captured in consultation requests, are associated with the number of unmet palliative care needs that emerge during consultation, as an indicator of complexity. Design: We performed a retrospective cohort analysis of palliative care consultations. Setting: We analyzed quality-of-care data from specialty palliative care consultations contained in the Quality Data Collection Tool of the Global Palliative Care Quality Alliance from 2012 to 2017. Measurements: Using 13 point-of-care assessments of quality of life, symptoms, advance care planning, and prognosis, we created a complexity score ranging from 0 (not complex) to 13 (highest complexity). Using multivariable linear regression, we examined the relationships of consultation setting and patient characteristics with complexity score. Results: Patients in our cohort (N = 3121) had an average complexity score of 6.7 (standard deviation = 3.7). Female gender, nonwhite race, and neurological (e.g., dementia) and noncancer primary diagnosis were associated with increased complexity score. The hospital intensive care unit, compared with the general floor, was associated with higher complexity scores. In contrast, outpatient and residence, compared with the general floor, were associated with lower complexity scores. Conclusion: Patient, disease, and care setting factors known at the time of specialty palliative care consultation request are associated with level of complexity, and they may inform teams about the right service provisions, including time and expertise, required to meet patient needs.

The need for a Serious Illness Digital Ecosystem (SIDE) to improve outcomes for patients receiving palliative and hospice care.

Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.

Methods for training collaborative biostatisticians.

The emphasis on team science in clinical and translational research increases the importance of collaborative biostatisticians (CBs) in healthcare. Adequate training and development of CBs ensure appropriate conduct of robust and meaningful research and, therefore, should be considered as a high-priority focus for biostatistics groups. Comprehensive training enhances clinical and translational research by facilitating more productive and efficient collaborations. While many graduate programs in Biostatistics and Epidemiology include training in research collaboration, it is often limited in scope and duration. Therefore, additional training is often required once a CB is hired into a full-time position. This article presents a comprehensive CB training strategy that can be adapted to any collaborative biostatistics group. This strategy follows a roadmap of the biostatistics collaboration process, which is also presented. A TIE approach (Teach the necessary skills, monitor the Implementation of these skills, and Evaluate the proficiency of these skills) was developed to support the adoption of key principles. The training strategy also incorporates a "train the trainer" approach to enable CBs who have successfully completed training to train new staff or faculty.

Usability of PCforMe in Patients With Advanced Cancer Referred to Outpatient Palliative Care: Results of a Randomized, Active-Controlled Pilot Trial.

CONTEXT: Low utilization of palliative care services warrant testing of new solutions to educate and engage patients around the benefits of palliative care. OBJECTIVES: We sought out to develop and test a novel, mobile health solution to prepare patients for an upcoming outpatient palliative care appointment. METHODS: After developing a web-based tool called PCforMe (Palliative Care for Me), we conducted a randomized, active-controlled, trial of PCforMe. The primary outcome was the score on the System Usability Scale (SUS). Secondary outcomes were patient self-efficacy and change in knowledge. We compared PCforMe to three common online resources for patients seeking information about palliative care. RESULTS: A total of 80 patients were randomized. There were no significant demographic differences. Mean SUS score for PCforMe was 78.2, significantly above the normative average SUS score of 68 (P-value < 0.0001). Mean change in Perceived Efficacy in Patient-Physician Interactions score was -2.2 for PCforMe and -1.7 for control group (P-value = 0.72). Preparedness for an upcoming palliative care visit increased 50% in the intervention group and 13.3% in the control group. Difference in the number of patients with improved knowledge regarding palliative care approached significance (P = 0.06). Lastly, we found that the no-show rate was lower during Q1 2017 (during trial) and Q1 2016 (before trial), at 11.7% and 21%, respectively (P < 0.05). Comparing the full calendar year (CY) 2016 with 2017, we did not find a statistical difference (CY 2016 of 18.8% and 15% in CY 2017; P = 0.22). CONCLUSION: PCforMe is a usable mobile health tool to prepare patients for an upcoming palliative care appointment. Further research is needed to test effectiveness.

A behavioral cancer pain intervention: A randomized noninferiority trial comparing in-person with videoconference delivery.

OBJECTIVE: Behavioral cancer pain interventions are efficacious for improving important pain outcomes; yet, traditional in-person delivery limits patient access. This study compared videoconference-delivered mobile health pain coping skills training (mPCST) to in-person pain coping skills training (PCST-traditional). METHODS: This study was a randomized, noninferiority trial with cancer patients. Participants (N = 178) were randomly assigned to four, 45-minute sessions of mPCST or PCST-traditional. Session content focused on evidence-based cognitive and behavioral pain management skills. Assessments were completed at baseline, posttreatment, and 3-month posttreatment, and included measures of primary intervention outcomes (ie, pain severity and pain interference) and secondary intervention outcomes (ie, physical symptoms, psychological distress, physical well-being, and self-efficacy). The main study aim tested whether mPCST was more accessible (defined as feasibility, acceptability, patient burden, and engagement) than PCST-traditional. The second aim tested whether mPCST was noninferior to PCST-traditional. RESULTS: mPCST demonstrated significantly greater feasibility (ie, attrition, adherence, and time to completion) than PCST-traditional. Both groups reported similar patient burden and engagement as well as a high degree of acceptability. All intervention outcomes demonstrated noninferiority at posttreatment and, with the exception of physical symptoms, 3-month posttreatment. Concerning the primary intervention outcomes, 95% CIs for the mean differences (d) were below the noninferiority margin of 1 for pain severity (posttreatment d = 0.09, 95% CI, -0.63-0.81; 3 months d = -0.43 95% CI, -1.22-0.36) and pain interference (posttreatment d = -0.11, 95% CI, -0.99-0.76; 3 months d = -0.26 95% CI, -1.14-0.62). CONCLUSION: mPCST is highly accessible and noninferior to PCST-traditional.

Characteristics and Trends Among Patients With Cardiovascular Disease Referred to Palliative Care.

Importance: Use of palliative care (PC) for patients with cardiovascular disease (CVD) has increased recently. However, it is unknown if patients are receiving earlier referrals to PC. Objective: To assess characteristics and trends of patients with CVD referred to PC. Design, Setting, and Participants: Cohort study in which analysis of data from the multicenter Quality Data Collection Tool for Palliative Care registry from January 2, 2015, through December 29, 2017, included patients with CVD 18 years or older referred to initial PC consultation who had a documented palliative performance score (PPS) . Exposures: Patients with CVD who presented for an initial PC visit. Main Outcomes and Measures: The primary outcome was PPS. Secondary outcomes included symptoms and end-of-life documentation. Results: Among 1801 patients (mean [SD] age, 77.7 [13.7] years) from 16 sites in the analysis, 875 (48.6%) were women and 1339 (74.3%) were white. A low PPS score (0%-30%), consistent with bedbound status, was recorded for 521 patients (28.9%), with no change through time. The most common moderate to severe symptoms were poor well-being, tiredness, anorexia, and dyspnea. Year of encounter was associated with improved symptoms of pain (odds ratio, 1.25; 95% CI, 1.05-1.50) and with constipation (odds ratio, 1.32; 95% CI, 1.03-1.69). No change through time was noted in other symptoms or end-of-life documentation. Although the proportion of referrals from general medicine increased from 43.2% (167 of 387) in 2015 to 52.9% (410 of 775) in 2017, the proportion of referrals from cardiologists decreased from 16.5% (64 of 387) in 2015 to 10.5% (81 of 775) in 2017. The proportion of patients referred to PC who were black decreased from 11.9% (46 of 387) in 2015 to 6.3% (49 of 775) in 2017. While 69.5% of all patients with CVD (1252 of 1801) had a primary diagnosis of heart failure, the proportion of non-heart failure CVD diagnoses, such as coronary artery disease and valvular heart disease, increased from 25.6% (99 of 387) in 2015 to 30.1% (233 of 775) in 2017. Conclusions and Relevance: Patients with CVD demonstrated significant symptom burden, and there was no evidence in the registry of change in the PPSs of patients with CVD referred to PC through time. Cardiologists provided comparatively fewer referrals to PC for patients with CVD, and this proportion decreased through time. The proportion of racial and ethnic minorities referred to PC was small and decreased through time. These findings reinforce the need for cardiologists to be more engaged with PC and consider referring appropriate patients with CVD sooner.

A Guide to Reproducibility in Preclinical Research.

Many have raised concerns about the reproducibility of biomedical research. In this Perspective, the authors address this "reproducibility crisis" by distilling discussions around reproducibility into a simple guide to facilitate understanding of the topic.Reproducibility applies both within and across studies. The following questions address reproducibility within studies: "Within a study, if the investigator repeats the data management and analysis, will she get an identical answer?" and "Within a study, if someone else starts with the same raw data, will she draw a similar conclusion?" Contrastingly, the following questions address reproducibility across studies: "If someone else tries to repeat an experiment as exactly as possible, will she draw a similar conclusion?" and "If someone else tries to perform a similar study, will she draw a similar conclusion?"Many elements of reproducibility from clinical trials can be applied to preclinical research (e.g., changing the culture of preclinical research to focus more on transparency and rigor). For investigators, steps toward improving reproducibility include specifying data analysis plans ahead of time to decrease selective reporting; more explicit data management and analysis protocols; and increasingly detailed experimental protocols, which allow others to repeat experiments. Additionally, senior investigators should take greater ownership of the details of their research (e.g., implementing active laboratory management practices, such as random audits of raw data [or at least reduced reliance on data summaries], more hands-on time overseeing experiments, and encouraging a healthy skepticism from all contributors). These actions will support a culture where rigor + transparency = reproducibility.

Patient-reported distress in Hodgkin lymphoma across the survivorship continuum.

PURPOSE: Hodgkin lymphoma (HL) survivors face long-term, elevated risk of treatment-related sequelae, including psychosocial distress associated with poor health outcomes. The magnitude and sources of distress are not well described in the routine care of HL outside of clinical trials. METHODS: We conducted a retrospective cohort study of patients visiting a tertiary-care center for treatment or long-term follow-up of HL. Patient-reported distress was documented using the National Comprehensive Cancer Network Distress Thermometer (DT) and Problem List. Three survivor groups were compared using descriptive methods: on treatment, surviving < 5 years, and surviving ≥ 5 years since diagnosis. RESULTS: A total of 1524 DT were abstracted for 304 patients (106 on treatment, 77 surviving < 5 years, and 121 surviving ≥ 5 years). Distress was low overall (median DT = 1, inter-quartile range 0-4) and was similar across survivor groups. However, actionable distress (score ≥ 4) was reported at 29.5% of clinical encounters. Patients on treatment more frequently reported actionable distress (32.5% of visits) compared with patients surviving < 5 years (20.4%) and ≥ 5 years (28.7%) (P = 0.065). Distress was associated primarily with physical and emotional problems, especially fatigue, worry, and sleep. We did not observe any associations between distress and clinical prognostic factors. CONCLUSIONS: Distress burden is low in HL, but survivorship is marked by periods of actionable distress, largely related to physical symptoms and emotional issues. This burden may be higher when on treatment and is unrelated to disease-related prognostic factors. Survivorship research typically focuses on the post-therapy period, but our results support testing the efficacy of interventions to address distress in HL during active treatment as well.

Going for Broke: A Longitudinal Study of Patient-Reported Financial Sacrifice in Cancer Care.

PURPOSE: Patients with cancer are at risk for substantial treatment-related costs; however, little is known about patients' willingness to sacrifice to receive cancer care and how their attitudes and burden may change with time. PATIENTS AND METHODS: We conducted a longitudinal survey of insured patients with solid tumor cancers receiving chemotherapy or hormonal therapy. Patients were surveyed at two time points about their willingness to make financial sacrifices and their actual sacrifices, including out-of-pocket costs. Patient attitudes and sacrifices were compared over time. RESULTS: Of 349 patients approached, 300 completed the baseline survey (86% response) and 245 completed the follow-up survey 3 months later (82% retention). Median patient-reported cancer-related out-of-pocket costs for patients who completed both surveys were $393 per month (range, $0 to $26,586 per month) at baseline and $328 per month (range, $0 to $8,210 per month) at follow-up. At baseline, 49% were willing to declare personal bankruptcy, 38% were willing to sell their homes, and ≥ 65% were willing to make other sacrifices, including borrowing money to afford their cancer care. Upon follow-up, there were minor decreases in willingness; the maximum net change was a 7% decline in patients willing to declare bankruptcy. Actual sacrifice increased over time; the greatest increase was in patients who used their savings (increased from 41% to 54%). CONCLUSION: A large proportion of insured patients with cancer were willing to make considerable personal and financial sacrifices to receive care; these attitudes did not change greatly over time. Shared decision making is important to ensure patients fully understand the goals, risks, and benefits of therapy before they make such personal sacrifices.

Patient-Reported Distress in Myelodysplastic Syndromes and Its Association With Clinical Outcomes: A Retrospective Cohort Study.

Background: NCCN defines distress as a multifactorial, unpleasant emotional experience of a psychological nature that may interfere with patients' ability to cope with cancer symptoms and treatment. Patients with myelodysplastic syndromes (MDS) are at risk for distress due to the largely incurable nature of this hematopoietic malignancy and its symptom burden, yet associations with clinical outcomes are unknown. Methods: We retrospectively reviewed patient-reported distress data from adult ambulatory patients with MDS visiting a single, tertiary care medical center from July 2013 to September 2015. Demographic, diagnostic, treatment, and comorbidity information were abstracted from records along with NCCN Distress Thermometer (DT) and Problem List (PL) scores. Survival was analyzed using the Kaplan-Meier method and Cox proportional hazards regression. Results: We abstracted 376 DT scores (median, 1; range, 0-10) from 606 visits and 110 patients (median, 2 DT scores/patient; range, 1-16). NCCN Guidelines suggest that patients with DT scores ≥4 should be evaluated for referral to specialty services to address unmet needs. A total of 54 patients (49%) had at least 1 DT score ≥4 and 20 (18%) had 2 or more DT scores ≥4; 98 patients (89.1%) reported 1,379 problems during 23,613 person-days of follow-up (median, 4 problems/patient/visit; range, 1-23). The 5 most frequently reported problems were fatigue (181 times; 78 patients), pain (95 times; 46 patients), worry (80 times; 45 patients), sleep (78 times; 41 patients), and tingling hands/feet (68 times; 33 patients). After adjustment for risk stratification at diagnosis, a single point increase on the DT was associated with an increased risk of death (hazard ratio, 1.18; 95% CI, 1.01-1.36). Conclusions: Patients with MDS experience a high burden of distress, and patient-reported distress is associated with clinical outcomes. Distress should be further studied as a prognostic variable and a marker of unmet needs in MDS.

A Cohort Study of Patient-Reported Outcomes and Healthcare Utilization in Acute Myeloid Leukemia Patients Receiving Active Cancer Therapy in the Last Six Months of Life.

BACKGROUND: Evidence about the unique palliative care needs of patients with acute myeloid leukemia (AML) is limited. Improving the care of these patients will require a better understanding of their unmet needs, including symptom burden at the end of life, and patterns of healthcare utilization. OBJECTIVE: To describe AML patients' experiences in the last six months of life regarding symptom burden, blood product utilization, and use of palliative care services. METHODS: Exploratory analysis of prospectively collected patient-reported outcomes and healthcare utilization data during the last six months of life among 33 AML patients who died during a longitudinal observational study. RESULTS: Symptom burden, quality of life (QOL), and psychological distress worsened with proximity to death. Of the 26 patients with utilization data, most (n = 24; 92.4%) were hospitalized in the last month of life, with 26.9% (n = 7) dying in the intensive care unit. Patients required a median of 16 red blood cell transfusions in the last six months of life, and those with a high transfusion burden in the last month of life had a higher rate of in-hospital death (blood transfusions: p < 0.01; platelet transfusions: p = 0.03). Only six patients enrolled in hospice (23.1%). DISCUSSION: Patients with AML have marked symptoms and QOL impairments that escalate in the final six months of life. Patients entering the healthcare system for active cancer treatment are likely to continue disease-oriented care until death. High rates of hospitalization and blood product transfusion are a direct barrier to transitioning to hospice care.

Comparing the Palliative Care Needs of Patients With Hematologic and Solid Malignancies.

CONTEXT: Hematologic cancer patients use palliative care services less frequently than their solid tumor counterparts. Prior work suggests that these patients have a sizable symptom burden, but comparisons between hematologic and solid tumor patients near the end of life are limited. OBJECTIVES: To compare unmet symptom needs in a cohort of hematologic and solid tumor patients referred to specialty palliative care services. METHODS: Using a novel data registry of initial palliative care encounters, we performed a cross-sectional analysis of cancer patients receiving care across 17 sites within the Global Palliative Care Quality Alliance. We compared clinically-significant symptoms (rated as four or greater in severity) between hematologic and solid tumor patients and performed multivariate logistic regression analyses examining the relationship between symptom burden and tumor type. RESULTS: We identified 1235 cancer patients, 108 of which had hematologic malignancies. Pain, dyspnea, nausea, and anorexia burden were as high among patients with hematologic as those with solid malignancies. Blood cancer patients had higher rates of clinically-significant tiredness (51% vs. 42%; P = 0.03) than solid tumor patients. Finally, blood cancer patients had greater odds of being tired (odds ratio 2.19; CI 1.22-3.91) and drowsy (odds ratio 1.81; CI 1.07-3.07) than solid tumor patients independent of age, gender, race, and performance status. CONCLUSIONS: Hematologic and solid tumor patients have significant symptom burden at time of referral to palliative care services. Blood cancer patients may have unique concerns warranting targeted attention, including substantial drowsiness and tiredness. Our findings suggest a need to optimize palliative care usage in the hematologic cancer population.

Comparing the Palliative Care Needs of Those With Cancer to Those With Common Non-Cancer Serious Illness.

BACKGROUND: Historically, palliative care has been focused on those with cancer. Although these ties persist, palliative care is rapidly integrating into the care of patients with common, non-cancer serious illnesses. Despite this, the bulk of literature informing palliative care practices stems from the care of cancer patients. OBJECTIVES: We compared functionality, advanced care planning, hospital admissions, prognosis, quality of life, pain, dyspnea, fatigue, and depression between patients with cancer and three non-cancer diagnoses-end-stage renal disease (ESRD), heart failure (HF), and chronic obstructive pulmonary disease (COPD). METHODS: We conducted a cross-sectional, retrospective analysis of the characteristics and symptoms of patient's with ESRD, HF, COPD, and cancer at time of first specialty palliative care referral. Using a web-based point of care quality assessment and reporting tool, Quality Data and Collection Tool-Palliative care, this analysis evaluated all eligible patients who received a palliative care consultation between October 1, 2012 and November 25, 2014. Data were obtained from 13 participating sites. The primary outcome for the study was functionality using the palliative performance scale. Hospital admission in the last 30 days, prognosis, patient's understanding of prognosis, advanced care planning including code status and appointed decision maker, pain, fatigue, depression, and dyspnea were also evaluated as secondary outcomes. We tested for an association between our outcomes with disease type (cancer vs. non-cancer) fitting multivariable logistic regression models. RESULTS: We found that the patients with primary diagnoses other than cancer were less functional at time of referral (odds ratio: 1.6; 95% CI: 1.1, 2.3; P < 0.05). CONCLUSION: Patients with COPD, ESRD, and HF were less functional and more likely to be hospitalized at time of referral to palliative care than cancer patients. These findings may be reflective of the slower and more varied trajectory of non-cancer serious illness. One aim of palliative care for those with non-cancer severe illness should be directed toward improving and assisting with functionality and decreasing frequency of hospital admissions. These interventions could take place in the palliative care office, but could also be integrated into hospital discharge plans.