The Cancer Financial Experience (CAFÉ) study: randomized controlled trial of a financial navigation intervention to address cancer-related financial hardship.

BACKGROUND: There is an urgent need for evidence on how interventions can prevent or mitigate cancer-related financial hardship. Our objectives are to compare self-reported financial hardship, quality of life, and health services use between patients receiving a financial navigation intervention versus a comparison group at 12 months follow-up, and to assess patient-level factors associated with dose received of a financial navigation intervention. METHODS: The Cancer Financial Experience (CAFÉ) study is a multi-site randomized controlled trial (RCT) with individual-level randomization. Participants will be offered either brief (one financial navigation cycle, Arm 2) or extended (three financial navigation cycles, Arm 3) financial navigation. The intervention period for both Arms 2 and 3 is 6 months. The comparison group (Arm 1) will receive enhanced usual care. The setting for the CAFÉ study is the medical oncology and radiation oncology clinics at two integrated health systems in the Pacific Northwest. Inclusion criteria includes age 18 or older with a recent cancer diagnosis and visit to a study clinic as identified through administrative data. Outcomes will be assessed at 12-month follow-up. Primary outcomes are self-reported financial distress and health-related quality of life. Secondary outcomes are delayed or foregone care; receipt of medical financial assistance; and account delinquency. A mixed methods exploratory analysis will investigate factors associated with total intervention dose received. DISCUSSION: The CAFÉ study will provide much-needed early trial evidence on the impact of financial navigation in reducing cancer-related financial hardship. It is theory-informed, clinic-based, aligned with patient preferences, and has been developed following preliminary qualitative studies and stakeholder input. By design, it will provide prospective evidence on the potential benefits of financial navigation on patient-relevant cancer outcomes. The CAFÉ trial's strengths include its broad inclusion criteria, its equity-focused sampling plan, its novel intervention developed in partnership with clinical and operations stakeholders, and mixed methods secondary analyses related to intervention dose offered and dose received. The resulting analytic dataset will allow for rich mixed methods analysis and provide critical information related to implementation of the intervention should it prove effective. TRIAL REGISTRATION: ClinicalTrials.gov NCT05018000 . August 23, 2021.

Social Risk Factors and Desire for Assistance Among Patients Receiving Subsidized Health Care Insurance in a US-Based Integrated Delivery System.

PURPOSE: Because social conditions such as food insecurity and housing instability shape health outcomes, health systems are increasingly screening for and addressing patients' social risks. This study documented the prevalence of social risks and examined the desire for assistance in addressing those risks in a US-based integrated delivery system. METHODS: A survey was administered to Kaiser Permanente members on subsidized exchange health insurance plans (2018-2019). The survey included questions about 4 domains of social risks, desire for help, and attitudes. We conducted a descriptive analysis and estimated multivariate modified Poisson regression models. RESULTS: Of 438 participants, 212 (48%) reported at least 1 social risk factor. Housing instability was the most common (70%) factor reported. Members with social risks reported more discomfort being screened for social risks (14.2% vs 5.4%; P = .002) than those without risks, although 90% of participants believed that health systems should assist in addressing social risks. Among those with 1-2 social risks, however, only 27% desired assistance. Non-Hispanic Black participants who reported a social risk were more than twice as likely to desire assistance compared with non-Hispanic White participants (adjusted relative risk [RR] 2.2; 95% CI, 1.3-3.8). CONCLUSIONS: Athough most survey participants believed health systems have a role in addressing social risks, a minority of those reporting a risk wanted assistance and reported more discomfort being screened for risk factors than those without risks. Health systems should work to increase the comfort of patients in reporting risks, explore how to successfully assist them when desired, and offer resources to address these risks outside the health care sector.VISUAL ABSTRACT.

Aligning care with the personal values of patients with complex care needs.

OBJECTIVE: To identify opportunities to align care with the personal values of patients from three distinct groups with complex medical, behavioral, and social needs. DATA SOURCES/STUDY SETTING: Between June and August 2019, we conducted semi-structured interviews with individuals with complex care needs in two integrated health care delivery systems. STUDY DESIGN: Qualitative study using semi-structured interviews. DATA COLLECTION METHODS: We interviewed three groups of patients at Kaiser Permanente Washington and Kaiser Permanente Colorado representing three distinct profiles of complex care needs: Group A ("obesity, opioid prescription, and low-resourced neighborhood"), Group B ("older, high medical morbidity, emergency department, and hospital use"), and Group C ("older, mental and physical health concerns, and low-resourced neighborhood"). These profiles were identified based on prior work and prioritized by internal primary care stakeholders. Interview transcripts were analyzed using thematic analysis. PRINCIPAL FINDINGS: Twenty-four patients participated; eight from each complex needs profile. Mean age across groups was 71 (range 48-86) years. We identified five themes common across the three groups that captured patients' views regarding values-aligned care. These themes focused on the importance of care teams exploring and acknowledging a patient's values, providing access to nonphysician providers who have different perspectives on care delivery, offering values-aligned mental health care, ensuring connection to community-based resources that support values and address needs, and providing care that supports the patient plus their family and caregivers. CONCLUSIONS: Our results suggest several opportunities to improve how care is delivered to patients with different complex medical, behavioral, and social needs. Future research is needed to better understand how to incorporate these opportunities into health care.

How, When, and With Whom Should Cost of Care Conversations Occur? Preferences of Two Distinct Cancer Survivor Groups.

PURPOSE: Cost of care (CoC) conversations should occur routinely in oncology practice. However, patient preferences about with whom, when, and how to have these conversations are missing and preferences may vary across patient populations. METHODS: We performed a secondary qualitative analysis of quotes from interviews with 28 cancer survivors from two health care settings (Kaiser Permanente Washington and O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham [UABCCC]). A targeted approach searched for three constructs: (1) Who should have CoC conversations with patients? (2) When should CoC conversations occur? and (3) How should CoC conversations happen? RESULTS: Interviewees were similar in age and education, but UABCCC participants had more racial/ethnic minority representation and financial distress. Within each construct, themes were similar across both groups. As to who should have CoC conversations, we found that (1) providers' main role is medical care, not CoC; and (2) care team staff members are a more appropriate choice to address CoC needs. About the question of when, we found that (3) individuals have strong convictions about when and if they want to discuss CoC; and (4) CoC information and resources need to be available when patients are ready. About the question of how, themes were (5) provide estimates of anticipated out-of-pocket costs and insurance coverage; (6) provide reassurance, sympathy, and concrete solutions; and (7) because of their sensitivity, conduct CoC conversations in a comfortable, private space. CONCLUSION: These findings offer general guidance as to who should conduct CoC conversations and when and how they should occur, with applicability across different patient populations.

Workflow Requirements for Cost-of-Care Conversations in Outpatient Settings Providing Oncology or Primary Care: A Qualitative, Human-Centered Design Study.

Background: Patients prefer to discuss costs in the clinical setting, but physicians and teams may be unprepared to incorporate cost discussions into existing workflows. Objective: To understand and improve clinical workflows related to cost-of-care conversations. Design: Qualitative human-centered design study. Setting: 2 integrated health systems in the U.S. Pacific Northwest: a system-wide oncology service line and a system-wide primary care service line. Participants: Clinicians, clinical team members, operations staff, and patients. Measurements: Ethnographic observations were made at the integrated health systems, assessing barriers to and facilitators of discussing costs with patients. Three unique patient experiences of having financial concerns addressed in the clinic were designed. These experiences were refined after in-person interviews with patients (n = 20). Data were synthesized into a set of clinical workflow requirements. Results: Most patient cost concerns take 1 of 3 pathways: informing clinical care decision making, planning and budgeting concerns, and addressing immediate financial hardship. Workflow requirements include organizational recognition of the need for clinic-based cost-of-care conversations; access to cost and health plan benefit data to support each conversation pathway; clear team member roles and responsibilities for addressing cost-of-care concerns; a patient experience where cost questions are normal and each patient's preferences and privacy are respected; patients know who to go to with cost questions; patients' concerns are documented to minimize repetition to multiple team members; and patients learn their expected out-of-pocket costs before treatment begins. Limitation: Results may have limited generalizability to other health care settings, and the study did not test the effectiveness of the workflows developed. Conclusion: Clinic-based workflows for cost-of-care conversations that optimize patients' care experience require organizational commitment to addressing cost concerns, clear roles and responsibilities, appropriate and complete data access, and a team-based approach. Primary Funding Source: Robert Wood Johnson Foundation.

Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network.

The Cancer Research Network (CRN) is a consortium of 12 research groups, each affiliated with a nonprofit integrated health care delivery system, that was first funded in 1998. The overall goal of the CRN is to support and facilitate collaborative cancer research within its component delivery systems. This paper describes the CRN's 20-year experience and evolution. The network combined its members' scientific capabilities and data resources to create an infrastructure that has ultimately supported over 275 projects. Insights about the strengths and limitations of electronic health data for research, approaches to optimizing multidisciplinary collaboration, and the role of a health services research infrastructure to complement traditional clinical trials and large observational datasets are described, along with recommendations for other research consortia.

Latina and Black/African American Women's Perspectives on Cancer Screening and Cancer Screening Reminders.

INTRODUCTION: Racial and ethnic disparities continue to exist in cancer screening rates, especially among US Latina and Black/African American populations. We conducted six focus groups among 41 women from these communities in order to better understand their preferences about cancer screening reminders and the motivators and deterrents they face in obtaining recommended breast, cervical, and colon cancer screening. METHODS: Using self-reported patient race/ethnicity from electronic medical records of a large, integrated health care system in Seattle, we recruited women ages 30-60 to participate in one of five 2-hour focus groups. Using verbatim transcripts from these discussions, we conducted a qualitative analysis to identify common themes. RESULTS: The focus group participants were primarily strong endorsers and utilizers of recommended breast, cervical, and colon cancer screening services. Insurance and belief in preventive care were the most common motivators that they cited in obtaining cancer screening. However, they still reported multiple barriers to getting recommended cancer screening for themselves and community members, including lack of time, conflicting information about screening intervals, distrust in the health care system, and a lack of understanding of the benefits of preventive care. CONCLUSIONS: Efforts to improve understanding about the benefits of cancer screening, clarify cancer screening guideline recommendations, increase cultural competency among health care professionals, and expand the times and locations where cancer screening is available are all options that may improve cancer screening rates among Latinas and Black/African American women.

A qualitative study of factors underlying decision making for joint replacement among African Americans and Latinos with osteoarthritis.

To support patients in making decisions that align with their unique cultural beliefs, an understanding of factors underlying patient preferences is needed. We sought to identify psychosocial factors that influenced decision making among African-American and Hispanic patients referred for knee or hip arthroplasty. Thirty-six participants deciding on surgery were interviewed. Responses were audio-taped, transcribed, and read. Codes were assigned to the raw data and then clustered into categories that were analyzed to yield overarching themes. This process was repeated independently by two corroborators. Six categories described the mental calculations made in patients' decision-making processes: 1) self-assessment of fit for surgery based on age and comorbidity, 2) research and development of mental report cards of their surgeons, 3) reliving of social network experiences, 4) reliance on faith and spirituality for guidance, 5) acknowledgment of fear and anxiety, and 6) setting expectations for recovery. This study advanced the understanding of how decisions about joint replacement are constructed and identified cultural levers that can be targeted for intervention. Developing culturally tailored health information that addresses some of our findings and disseminating messages through social networks may reduce the underutilization of joint replacement among racial and ethnic minority populations.

Perspectives of cancer survivors on the role of different healthcare providers in an integrated delivery system.

PURPOSE: The purpose of this paper is to describe patient perspectives on survivorship care 1 year after cancer diagnosis. METHODS: The study was conducted at an integrated healthcare delivery system in western Washington State. Participants were patients with breast, colorectal, and lung cancer who had enrolled in a randomized control trial (RCT) of oncology nurse navigation to improve early cancer care. Those alive and enrolled in the healthcare system 1 year after diagnosis were eligible for this analysis. Participants completed surveys by phone. Questions focused on receipt of treatment summaries and care plans; discussions with different providers; patient opinions on who does and should provide their care; and patient perspectives primary care providers' (PCP) knowledge and skills related to caring for cancer survivors RESULTS: Of the 251 participants in the RCT, 230 (91.6%) responded to the 12-month phone survey and were included in this analysis; most (n = 183, 79.6%) had breast cancer. The majority (84.8%) considered their cancer specialist (e.g., medical, radiation, surgical or gynecological oncologist) to be their main provider for cancer follow-up and most (69.4%) had discussed follow-up care with that provider. Approximately half of patients were uncertain how well their PCP communicated with the oncologist and how knowledgeable s/he was in caring for cancer survivors. CONCLUSIONS: One year after diagnosis, cancer survivors continue to view cancer specialists as their main providers and are uncertain about their PCP's skills and knowledge in managing their care. Our findings present an opportunity to help patients understand what their PCPs can and cannot provide in the way of cancer follow-up care. IMPLICATIONS FOR CANCER SURVIVORS: Additional research on care coordination and delivery is necessary to help cancer survivors manage their care between primary care and specialty providers.

Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research.

INTRODUCTION: Much progress has been made in cancer survivorship research, but there are still many unanswered questions that can and need to be addressed by collaborative research consortia. METHODS: Since 1999, the National Cancer Institute-funded HMO Cancer Research Network (CRN) has engaged in a wide variety of research focusing on cancer survivorship. With a focus on thematic topics in cancer survivorship, we describe how the CRN has contributed to research in cancer survivorship and the resources it offers for future collaborations. RESULTS: We identified the following areas of cancer survivorship research: surveillance for and predictors of recurrences, health care delivery and care coordination, health care utilization and costs, psychosocial outcomes, cancer communication and decision making, late effects of cancer and its treatment, use of and adherence to adjuvant therapies, and lifestyle and behavioral interventions following cancer treatment. CONCLUSIONS: With over a decade of experience using cancer data in community-based settings, the CRN investigators and their collaborators are poised to generate evidence in cancer survivorship research. IMPLICATIONS FOR CANCER SURVIVORS: Collaborative research within these settings can improve the quality of care for cancer survivors within and beyond integrated health care delivery systems.

Providing care for cancer survivors in integrated health care delivery systems: practices, challenges, and research opportunities.

PURPOSE: Optimal approaches to cancer survivorship care are needed. This study sought to identify practices, barriers, and research opportunities in meeting the care needs of cancer survivors in integrated health care delivery systems. METHODS: This study was conducted at 10 sites within the Cancer Research Network, a National Cancer Institute-funded consortium of integrated health care delivery systems providing care for nearly 11 million enrollees. We identified 48 clinical leaders, administrators, and providers in oncology, primary care, nursing administration, and specialty care. Forty (83%) completed semi-structured, audio-recorded, transcribed telephone interviews, which we analyzed using an immersion-crystallization approach. RESULTS: Respondents were aware of the needs of cancer survivors and the difficulties they face in transitioning from treatment to follow-up care. Respondents from all sites reported that oncology and primary care are jointly responsible for the care of cancer survivors, often through the use of electronic medical records. Many respondents were not familiar with standardized survivorship care plans. Only two sites had formal cancer survivorship programs in place, and two were developing such programs. Respondents at sites with and without programs acknowledged existing gaps in evidence on the effectiveness of formal survivorship care and expressed a desire for additional research. CONCLUSION: Our exploratory study suggests an awareness of cancer survivorship care in integrated health care delivery systems, although approaches to providing such care vary across systems. These settings may offer a unique opportunity to develop, test, and implement innovative models of care, which can be systematically evaluated to inform and enhance cancer survivorship care in diverse health care settings.

Predictors of 1-year change in patient activation in older adults with diabetes mellitus and heart disease.

OBJECTIVES: To identify patterns and predictors of 1-year change in patient activation in chronically ill older adults. DESIGN: Prospective cohort study. SETTING: Integrated healthcare delivery system. PARTICIPANTS: Members of an integrated delivery system from 2007 to 2009 in western Washington state aged 65 and older with diabetes mellitus or heart disease; participants responded to baseline and 1-year follow-up mailed surveys about their health and health care (N = 2,341). MEASUREMENTS: Patient activation was measured using the 13-item Patient Activation Measure (PAM) at baseline and follow-up. Automated diagnoses and procedure data were extracted from databases. Multinomial logistic regression, stratified according to baseline activation stage, was used to estimate the odds ratios for increasing or decreasing activation stage associated with participant characteristics and serious adverse health events. RESULTS: Fifty-two percent of participants changed activation stage between baseline and follow-up. Of people who changed stage, 54% increased, and 46% decreased. Older age and worse baseline self-reported health were independent predictors of activation change in multivariate models. Changes in health status or serious adverse health events such as the occurrence of hospitalizations, new major diagnoses, or procedures were not related to changes in activation in this age group. CONCLUSION: Patient activation, as measured using the PAM, changes over time in elderly adults with chronic diseases. Clinicians and researchers who use the PAM for patient care or as an outcome measure in research studies should be aware of its fluctuation over time in chronically ill older persons.

Patient-reported care coordination: associations with primary care continuity and specialty care use.

PURPOSE: Care coordination is increasingly recognized as a necessary element of high-quality, patient-centered care. This study investigated (1) the association between care coordination and continuity of primary care, and (2) differences in this association by level of specialty care use. METHODS: We conducted a cross-sectional study of Medicare enrollees with select chronic conditions in an integrated health care delivery system in Washington State. We collected survey information on patient experiences and automated health care utilization data for 1 year preceding survey completion. Coordination was defined by the coordination measure from the short form of the Ambulatory Care Experiences Survey (ACES). Continuity was measured by primary care visit concentration. Patients who had 10 or more specialty care visits were classified as high users. Linear regression was used to estimate the association between coordination and continuity, controlling for potential confounders and clustering within clinicians. We used a continuity-by-specialty interaction term to determine whether the continuity-coordination association was modified by high specialty care use. RESULTS: Among low specialty care users, an increase of 1 standard deviation (SD) in continuity was associated with an increase of 2.71 in the ACES coordination scale (P <.001). In high specialty care users, we observed no association between continuity and reported coordination (P= .77). CONCLUSIONS: High use of specialty care may strain the ability of primary care clinicians to coordinate care effectively. Future studies should investigate care coordination interventions that allow for appropriate specialty care referrals without diminishing the ability of primary care physicians to manage overall patient care.

The influence of travel time on breast cancer characteristics, receipt of primary therapy, and surveillance mammography.

Travel time has been shown to influence some aspects of cancer characteristics at diagnosis and care for women with breast cancer, but important gaps remain in our understanding of its impact. We examined the influence of travel time to the nearest radiology facility on breast cancer characteristics, treatment, and surveillance for women with early-stage invasive breast cancer. We included 1,012 women with invasive breast cancer (stages I and II) who had access to care within an integrated health care delivery system in western Washington State. The travel times to the nearest radiology facility were calculated for all the U.S. Census blocks within the study area and assigned to women based on residence at diagnosis. We collected cancer characteristics, primary and adjuvant therapies, and surveillance mammography for at least 2.5 years post diagnosis and used multivariable analyses to test the associations of travel time. The majority of women (68.6%) lived within 20 min of the nearest radiology facility, had stage I disease (72.7%), received breast conserving therapy (68.7%), and had annual surveillance mammography the first 2 years after treatment (73.7%). The travel time was not significantly associated with the stage or surveillance mammography after adjusting for covariates. Primary therapy was significantly related to travel time, with greater travel time (>30 min vs. ≤ 10 min) associated with a higher likelihood of mastectomy compared to breast conserving surgery (RR = 1.53; 95% CI, 1.16-2.01). The travel time was not associated with the stage at diagnosis or surveillance mammography receipt. The travel time does seem to influence the type of primary therapy among women with breast cancer, suggesting that women may prefer low frequency services, such as mastectomy, if geographic access to a radiology facility is limited.

Diffusion of aromatase inhibitors for breast cancer therapy between 1996 and 2003 in the Cancer Research Network.

PURPOSE: Clinical trials demonstrated adjuvant aromatase inhibitor treatment is superior for decreasing breast cancer recurrence risk over adjuvant tamoxifen treatment as early as 2001. Yet clinical use for adjuvant treatment was not recommended by the American Society of Clinical Oncology until 2004. Aromatase inhibitor uptake after the first public presentation of randomized trial results but before the release of national guidelines is unclear. We evaluated diffusion of aromatase inhibitor dispensings for breast cancer treatment in integrated healthcare delivery systems across the United States. METHODS: We collected automated data for 13,245 women enrolled at seven integrated healthcare delivery systems in the Cancer Research Network. All women were aged >55 and diagnosed with estrogen receptor positive, invasive breast cancer between 1996 and 2003. We used electronic pharmacy data to identify aromatase inhibitor and tamoxifen dispensings through 2004. We evaluated the proportions of women who received hormone dispensings in two ways: (1) at any point after diagnosis to capture all use, and (2) in the two-year period following diagnosis to approximate adjuvant use. RESULTS: Over time, adjuvant aromatase inhibitor use increased whereas tamoxifen use decreased. Aromatase inhibitor dispensings within 2 years of diagnosis increased from 4.1% among women diagnosed in 2000 to 13% in 2001, 24% in 2002, and 40% in 2003. Tamoxifen use declined starting in 2001 at every system. CONCLUSION: Aromatase inhibitor use rose dramatically after 2001 while tamoxifen use decreased. It appears results from early clinical trials changed practice in these integrated healthcare systems before formal changes in national guidelines.