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.

Mobile Application to Identify Cancer Treatment-Related Financial Assistance: Results of a Randomized Controlled Trial.

PURPOSE: Insured patients with cancer face high treatment-related, out-of-pocket (OOP) costs and often cannot access financial assistance. We conducted a randomized, controlled trial of Bridge, a patient-facing app designed to identify eligible financial resources for patients. We hypothesized that patients using Bridge would experience greater OOP cost reduction than controls. METHODS: We enrolled patients with cancer who had OOP expenses from January 2018 to March 2019. We randomly assigned patients 1:1 to intervention (Bridge) versus control (financial assistance educational websites). Primary and secondary outcomes were self-reported OOP costs and subjective financial distress 3 months postenrollment. In post hoc analyses, we analyzed application for and receipt of financial assistance at 3 months postenrollment. We used chi-square, Mann-Whitney tests, and logistic regression to compare study arms. RESULTS: We enrolled 200 patients. The median age was 57 years (IQR, 47.0-63.0). Most patients had private insurance (71%), and the median household income was $62,000 in US dollars (USD) (IQR, $36,000-$100,000 [USD]). Substantial missing data precluded assessment of primary and secondary outcomes. In post hoc analyses, patients in the Bridge arm were more likely than controls to both apply for and receive financial assistance. CONCLUSION: We were unable to test our primary outcome because of excessive missing follow-up survey data. In exploratory post hoc analyses, patients who received a financial assistance app were more likely to apply for and receive financial assistance. Ultimately, our study highlights challenges faced in identifying measurable outcomes and retaining participants in a randomized, controlled trial of a mobile app to alleviate financial toxicity.

Hospice Use Among Patients With Cancer: Trends, Barriers, and Future Directions.

Patients with advanced cancer and their families frequently encounter clinical and logistical challenges related to end-of-life care. Hospice provides interdisciplinary and holistic care to meet patients' biomedical, psychosocial, and spiritual needs in the last phases of life. Despite increasing general acceptance and use among patients with cancer, hospice remains underused. Underuse stems from ongoing misconceptions regarding hospice and its purpose, coupled with the rapid development of novel anticancer treatments, such as immunotherapies and targeted therapies, that have changed the landscape of possibilities. Furthermore, rapid evolutions in how end-of-life care is structured and reimbursed for will affect how oncology patients will intersect with hospice care. In this review, we explore the current and future challenges to greater integration of hospice care in the care of patients with advanced cancer and propose five recommendations as part of the path forward.

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.

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.

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.

Feasibility and Acceptability of a Best Supportive Care Checklist among Clinicians.

CONTEXT: Best supportive care (BSC) is often not standardized across sites, consistent with best evidence, or sufficiently described. We developed a consensus-based checklist to document BSC delivery, including symptom management, decision making, and care planning. We hypothesized that BSC can be feasibly documented with this checklist consistent with consolidated standards of reporting trials. OBJECTIVE: To determine feasibility/acceptability of a BSC checklist among clinicians. METHODS: To test feasibility of a BSC checklist in standard care, we enrolled a sample of clinicians treating patients with advanced cancer at four centers. Clinicians were asked to complete the checklist at eligible patient encounters. We surveyed enrollees regarding checklist use generating descriptive statistics and frequencies. RESULTS: We surveyed 15 clinicians and 9 advanced practice providers. Mean age was 41 (SD = 7.9). Mean years since fellowship for physicians was 7.2 (SD = 4.5). Represented specialties are medical oncology (n = 8), gynecologic oncology (n = 4), palliative care (n = 2), and other (n = 1). For "overall impact on your delivery of supportive/palliative care," 40% noted improved impact with using BSC. For "overall impact on your documentation of supportive/palliative care," 46% noted improvement. Impact on "frequency of comprehensive symptom assessment" was noted to be "increased" by 33% of providers. None noted decreased frequency or worsening impact on any measure with use of BSC. Regarding feasibility of integrating the checklist into workflow, 73% agreed/strongly agreed that checklists could be easily integrated, 73% saw value in integration, and 80% found it easy to use. CONCLUSION: Clinicians viewed the BSC checklist favorably illustrating proof of concept, minor workflow impact, and potential of benefit to patients.

Quality Improvement Pearls for the Palliative Care and Hospice Professional.

Rapid changes in how palliative care clinicians are evaluated and paid present an imperative for clinicians to adeptly and routinely perform quality improvement in usual practice. Like empathic communication and facilitating goals of care discussions, quality improvement skills must be learned, honed, and practiced, so identifying problems and brainstorming solutions becomes a natural component of delivering serious illness care. Using our experience in both failures and successes in performing quality improvement, here we provide a prioritized list of 10 pearls specifically aimed to palliative care and hospice professionals. We aim to demystify quality improvement, highlight areas where rigor and a systematic approach are needed for success, and offer our own lessons learned and mistakes made to promote success for our colleagues and our field.

Delivery of Community-Based Palliative Care: Findings from a Time and Motion Study.

BACKGROUND: Use of palliative care has increased substantially as the population ages and as evidence for its benefits grows. However, there is limited information regarding which care activities are necessary for delivering high-quality, interdisciplinary, community-based palliative care. OBJECTIVES: This study aims to identify and measure the discrete clinical and administrative activities completed by a multidisciplinary team in a hospice provider-led model for providing community-based palliative care. STUDY DESIGN: A time and motion study was conducted at three care settings within a large hospice and palliative care network and a process map was drawn to describe the personnel and activities recorded. METHODS: Researchers recorded activities performed by clinical and administrative staff. Activities were categorized into those related to patient care, administrative duties, care coordination, and other. A process map of palliative care delivery was created and descriptive statistics were used to calculate the proportion of time spent on discrete activities and within each activity category. RESULTS: Over 50 hours of activities were recorded during which the clinicians interacted with 25 patients and engaged in 20 distinct tasks. Physicians spent 94% of their time on tasks related to patient care and 1% on administrative tasks. Nurse practitioners and registered nurses spent 82% and 53% of their time on patient-related tasks and 2% and 37% on administrative tasks, respectively. CONCLUSION: The delivery of palliative care is interdisciplinary and involves numerous discrete tasks and activities. Understanding the components of a community-based palliative care model is the first step to designing incentives to encourage its spread.

Development of the Quality Data Collection Tool for Prospective Quality Assessment and Reporting in Palliative Care.

BACKGROUND: Assessing and reporting the quality of care provided are increasingly important in palliative care, but we currently lack practical, efficient approaches for collection and reporting. OBJECTIVE: In response, the Global Palliative Care Quality Alliance ("Alliance") sought to create a Quality Data Collection Tool for Palliative Care (QDACT-PC). METHODS: We collaboratively and iteratively developed QDACT-PC, an electronic, point-of-care quality monitoring system for palliative care that supports prospective quality assessment and reporting in any clinical setting. QDACT-PC is the web-based data collection and reporting interface. Quality measures selected to be used in QDACT-PC were derived from a systematic review summarizing all published palliative care quality measure sets; Alliance clinical providers prioritized measures to be included in QDACT-PC to ensure maximal clinical relevance. Data elements and variables required to ascertain conformance to all selected quality measures were included in the QDACT-PC data dictionary. Whenever possible, variables collected in QDACT-PC align with validated surveys and/or nationally recognized common data elements. QDACT-PC data elements and software programmed business rules inform real-time assessments of conformance to selected quality measures. Data are deposited into a centralized registry for future analyses. RESULTS: QDACT-PC can be used to report on >80% of all published palliative care quality measures and 100% of high-priority measure. CONCLUSION: Electronic methods for collecting point-of-care quality monitoring data can be developed using collaborative partnerships between community and academic palliative care providers. Feasibility testing and creation of feedback reports are ongoing.

Usability and Acceptability of the QDACT-PC, an Electronic Point-of-Care System for Standardized Quality Monitoring in Palliative Care.

CONTEXT: Few resources exist to support collaborative quality monitoring in palliative care. These tools, if proven efficient through technology-enabled methods, may begin to routinize data collection on quality during usual palliative care delivery. Usability testing is a common approach to assess how easily and effectively users can interact with a newly developed tool. OBJECTIVES: We performed usability testing of the Quality Data Collection Tool for Palliative Care (QDACT-PC) a novel, point-of-care quality monitoring tool for palliative care. METHODS: We used a mixed methods approach to assess community palliative care clinicians' evaluations of five domains of usability. These approaches included clinician surveys after recording mock patient data to assess satisfaction; review of entered data for accuracy and time to completion; and thematic review of "think aloud" protocols to determine issues, barriers, and advantages to the electronic system. RESULTS: We enrolled 14 palliative care clinicians for the study. Testing the electronic system vs. paper-based methods demonstrated similar error rates and time to completion. Overall, 68% of the participants believed that the electronic interface would not pose a moderate or major burden during usual clinical activities, and 65% thought it would improve the care they provided. Thematic analysis revealed significant issues with paper-based methods alongside training needs for future participants on using novel technologies that support the QDACT-PC. CONCLUSION: The QDACT-PC is a usable electronic system for quality monitoring in palliative care. Testing reveals equivalence with paper for data collection time, but with less burden overall for electronic methods across other domains of usability.

Quality of palliative care for patients with advanced cancer in a community consortium.

BACKGROUND: Measuring quality of care delivery is essential to palliative care program growth and sustainability. We formed the Carolinas Consortium for Palliative Care and collected a quality data registry to monitor our practice and inform quality improvement efforts. MEASURES: We analyzed all palliative care consultations in patients with cancer in our quality registry from March 2008 through October 2011 using 18 palliative care quality measures. Descriptive metric adherence was calculated after analyzing the relevant population for measurement. INTERVENTION: We used a paper-based, prospective method to monitor adherence for quality measures in a community-based palliative care consortium. OUTCOMES: We demonstrate that measures evaluating process assessment (range 63%-100%), as opposed to interventions (range 3%-17%), are better documented. CONCLUSIONS/LESSONS LEARNED: Analyzing data on quality is feasible and valuable in community-based palliative care. Overall, processes to collect data on quality using nontechnology methods may underestimate true adherence to quality measures.

The utility of cost discussions between patients with cancer and oncologists.

OBJECTIVES: Patients with cancer can experience substantial financial burden. Little is known about patients' preferences for incorporating cost discussions into treatment decision making or about the ramifications of those discussions. The objective of this study was to determine patient preferences for and benefits of discussing costs with doctors. STUDY DESIGN: Cross-sectional, survey study. METHODS: We enrolled insured adults with solid tumors on anticancer therapy who were treated at a referral cancer center or an affiliated rural cancer clinic. Patients were surveyed at enrollment and again 3 months later about cost discussions with doctors, decision making, and financial burden. Medical records were abstracted for disease and treatment data. Logistic regression investigated characteristics associated with greater desire to discuss costs. RESULTS: Of 300 patients (86% response rate), 52% expressed some desire to discuss treatment-related out-of-pocket costs with doctors and 51% wanted their doctor to take costs into account to some degree when making treatment decisions. However, only 19% had talked to their doctor about costs. Of those, 57% reported lower out-of-pocket costs as a result of cost discussions. In multivariable logistic regression, higher subjective financial distress was associated with greater likelihood to desire cost discussions (odds ratio [OR], 1.22; 95% CI, 1.10-1.36). Nonwhite race was associated with lower likelihood to desire cost discussions (OR, 0.53; 95% CI, 0.30-0.95). CONCLUSIONS: Patients with cancer varied in their desire to discuss costs with doctors, but most who discussed costs believed the conversations helped reduce their expenses. Patient-physician cost communication might reduce out-of-pocket costs even in oncology where treatment options are limited.

Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study.

PURPOSE: Cancer treatment-related out-of-pocket costs create substantial financial distress for many patients. However, little work has been done to describe available financial resources and barriers to connecting those resources to patients. METHODS: This was a single-center, qualitative study that used semistructured interviews and focus groups with social workers and financial care counselors. Interview guides were used to elicit feedback from study participants pertaining to the types of financial problems that their patients were experiencing, the process for addressing these issues, patient assistance resources, and access barriers. RESULTS: Four interviews and two focus group sessions (n = 15) were conducted in which four themes emerged among the social work and financial care counselor samples. Participants cited (1) frustration over the lack of financial resources and increasingly stringent eligibility criteria, (2) barriers to providing assistance such as process inefficiencies, (3) limited resources to identify at- risk patients and refer them for services, and (4) inadequate insurance coverage and availability. To bridge the gap between increasing patient need and limited resources, participants suggested development of interventions designed to aid in patient screening and resource identification. CONCLUSIONS: Oncology social workers and financial care counselors reported inadequate financial resources and faced barriers to matching appropriate resources with patients in need. Limited social work resources hindered early screening for financial distress. Interventions that focus on screening for early identification of financial distress and identification of resources are needed.