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The American Journal of Managed Care September 2015
Do Patient or Provider Characteristics Impact Management of Diabetes?
Erin S. LeBlanc, MD, MPH; A. Gabriela Rosales, MS; Sumesh Kachroo, PhD; Jayanti Mukherjee, PhD; Kristine L. Funk, MS; and Gregory A. Nichols, PhD
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The Utility of Cost Discussions Between Patients With Cancer and Oncologists
S. Yousuf Zafar, MD, MHS; Fumiko Chino, MD; Peter A. Ubel, MD; Christel Rushing, MS; Gregory Samsa, PhD; Ivy Altomare, MD; Jonathan Nicolla, MBA; Deborah Schrag, MD; James A. Tulsky, MD; Amy P. Aberne
Improving Partnerships Between Health Plans and Medical Groups
Howard Beckman, MD, FACP, FAACH; Patricia Healey, MPH; and Dana Gelb Safran, ScD
Innovative Approach to Patient-Centered Care Coordination in Primary Care Practices
Robin Clarke, MD, MSHS; Nazleen Bharmal, MD, PhD; Paul Di Capua, MD, MBA; Chi-Hong Tseng, PhD; Carol M. Mangione, MD, MSPH; Brian Mittman, PhD; and Samuel A. Skootsky, MD
Private Sector Risk-Sharing Agreements in the United States: Trends, Barriers, and Prospects
Louis P. Garrison, Jr, PhD; Josh J. Carlson, PhD; Preeti S. Bajaj, PhD; Adrian Towse, MA, MPhil; Peter J. Neumann, ScD; Sean D. Sullivan, PhD; Kimberly Westrich, MA; and Robert W. Dubois, MD, PhD
Developing Evidence That Is Fit for Purpose: A Framework for Payer and Research Dialogue
Rajeev K. Sabharwal, MPH; Jennifer S. Graff, PharmD; Erin Holve, PhD, MPH, MPP; and Robert W. Dubois, MD, PhD
Predicting Adherence Trajectory Using Initial Patterns of Medication Filling
Jessica M. Franklin, PhD; Alexis A. Krumme, MS; William H. Shrank, MD, MSHS; Olga S. Matlin, PhD; Troyen A. Brennan, MD, JD, MPH; and Niteesh K. Choudhry, MD, PhD
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Rebecca Paradis, MPA
Payer Source Influence on Effectiveness of Lifestyle Medicine Programs
Joseph Vogelgesang, BS; David Drozek, DO; Masato Nakazawa, PhD; Jay H. Shubrook, DO
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Schelomo Marmor, PhD, MPH; James W. Begun, PhD; Jean Abraham, PhD; and Beth A. Virnig, PhD, MPH
Targeting a High-Risk Group for Fall Prevention: Strategies for Health Plans
Lee A. Jennings, MD, MSHS; David B. Reuben, MD; Sung-Bou Kim, MPhil; Emmett Keeler, PhD; Carol P. Roth, RN, MPH; David S. Zingmond, MD, PhD; Neil S. Wenger, MD, MPH; and David A. Ganz, MD, PhD
Socioeconomic Disparities Across Ethnicities: An Application to Cervical Cancer Screening
Brendan Walsh, PhD; and Ciaran O’Neill, PhD

The Utility of Cost Discussions Between Patients With Cancer and Oncologists

S. Yousuf Zafar, MD, MHS; Fumiko Chino, MD; Peter A. Ubel, MD; Christel Rushing, MS; Gregory Samsa, PhD; Ivy Altomare, MD; Jonathan Nicolla, MBA; Deborah Schrag, MD; James A. Tulsky, MD; Amy P. Aberne
Many patients with cancer desire cost discussions with doctors, but those discussions are rare. Nevertheless, cost discussions may lower patient costs-usually without altering treatment.
ABSTRACT

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.
 
Am J Manag Care. 2015;21(9):607-615
Take-Away Points
 
Patients with cancer varied in their desire to discuss costs with doctors; most who discussed costs believed the conversations helped reduce their expenses. Communication on cost has the potential to reduce out-of-pocket costs, even in oncology, where treatment options are limited.
  • These results immediately impact cancer care as patients with cancer face higher out-of-pocket costs than those with other chronic illnesses. 
  • This work adds to the literature by describing the impact of cost discussions on patient costs and decision making. 
  • This work is key to healthcare reform since under the Affordable Care Act, a majority of Americans are signing up for high cost-sharing plans. Physicians and policy makers face a growing mandate to integrate costs into clinical decision making.
Cancer treatment in the United States or Europe costs well over $100 billion a year,1,2 and with increases in cost sharing,3 insured patients with cancer and cancer survivors experience substantial financial burdens.4 Although the Affordable Care Act (ACA) has improved access to care, many patients who enroll in bronze and some silver plans still face considerable out-of-pocket costs in the form of high deductibles and coinsurance.5 Hence, questions remain regarding how well insured patients will cope with costs in the healthcare reform setting.
 
Treatment-related financial burdens can impair patients’ quality of life and diminish the quality of cancer care.4,6,7 Not unlike the physical side effects associated with chemotherapy, cancer treatment might also be financially toxic.8 For example, those with a cancer diagnosis are more than twice as likely to declare personal bankruptcy than those without a cancer diagnosis.9 The financial impact of cancer care might also extend beyond patient well-being into patient care quality; patients on oral anticancer therapy with higher co-payments are more likely to be nonadherent to those drugs.10,11
 
Due to the mounting financial burden associated with cancer care, physicians, patients, and policy makers face a growing mandate to integrate costs into clinical decision making.12 The Institute of Medicine (IOM) issued a report on quality cancer care with a recommendation to provide patients with understandable information on costs.13 However, little is known about patients’ preferences for incorporating cost discussions into cancer treatment decision making and the ramifications of those discussions.
 
We conducted a cross-sectional study to determine if patients wanted to discuss the cost of treatment with doctors, if patients wanted to incorporate cost into treatment decision making, and if patients found cost discussions useful in lowering out-of-pocket expenses.

METHODS
Patients
We enrolled a convenience sample of adult patients at a comprehensive cancer center and at 3 affiliated, rural, oncology clinics between November 2012 and June 2013. Potential participants were identified via review of clinic schedules. Eligible patients had public or private insurance coverage, had a confirmed solid tumor cancer diagnosis, and were receiving anticancer hormonal therapy or chemotherapy for at least 1 month at the time of enrollment.
 
We excluded the uninsured, those receiving radiation therapy, and non–English-speaking patients. Uninsured patients were excluded since we were focused primarily on the experiences of patients who are insured but were still at risk of financial distress. The underinsured are especially important to study since the hazard of underinsurance might remain despite the ACA.5 Patients receiving radiation therapy were excluded due to the relatively short nature of a typical course of radiation therapy.
 
Eligible, consecutive (ie, no special selection in advance) patients were approached while waiting in clinic or while waiting to receive chemotherapy. However, due to study staff availability, not every potentially eligible patient was screened or approached for study participation. After obtaining informed consent, trained interviewers surveyed patients in person at the time of enrollment; 3 months after completion of the baseline survey, interviewers again surveyed patients by phone or in person. Participants were given $10 for completion of the baseline interview and another $10 for completion of the 3-month follow-up interview.
 
Data Collection
Data were collected via abstraction of the medical record and patient interview. We developed study-specific baseline and 3-month follow-up surveys. The follow-up survey—identical to the baseline survey minus demographic survey items—was administered to determine whether preferences for cost discussions changed over time. Demographic survey items were adapted from those used in the national Cancer Care Outcomes Research and Surveillance (CanCORS) study14 and a survey-based survivorship study.15
 
Items regarding cost-related decision making were developed for this study. We asked participants, “How much do you want to talk to your doctor about your cancer-related out-of-pocket costs?” This item was scored on scale of 1 (“not at all”) to 10 (“a great deal”). We asked participants, “Do you want your cancer doctor to take your costs into account when he/she decides how to treat your cancer?” This item was scored on scale of 1 (“never”) to 10 (“always take costs into account”). We surveyed participants about perceived barriers to cost discussions and factors that motivated them to discuss costs. Patients who discussed costs with their oncologists were asked: 1) whether the cost discussion decreased their out-of-pocket costs, and 2) what changes in treatment plan decreased costs.
 
Survey items regarding general clinical decision-making preferences were adapted from CanCORS.16 Financial distress was measured using a validated 8-question scale used in the financial planning community but not previously used in clinical research.17 For consistency with the other measures, the financial distress measure is reported as an inverted score of 1 (“least financial distress”) to 10 (“greatest financial distress”), rather than the original scoring where 1 was associated with greatest distress. Objective financial burden was measured using items from our prior study regarding out-of-pocket expenses related to cancer care.7 Overall quality of life was assessed using a validated, single-item, linear analogue self-assessment with a scale of 0 (“as bad as can be”) to 10 (“as good as can be”).18 All survey items were piloted in 20 patients to review questions for readability and comprehension.
 
The medical record was abstracted for cancer diagnosis, stage, type of treatment, and duration of treatment at the time of enrollment. The Duke University Medical Center Institutional Review Board approved this study.
 
Statistical Analysis
To assess generalizability of these findings, we compared age, disease characteristics, and treatment characteristics of patients who chose to participate to those who declined participation. We summarized descriptive variables including demographics, clinical, and financial characteristics. Changes in participant response between baseline and follow-up survey were assessed using McNemar’s test for matched pairs. The primary logistic regression model investigated characteristics associated with a greater patient desire to discuss costs with doctors, using responses to the question, “How much do you want to talk to your doctor about your cancer-related out-of-pocket costs?”
 
The primary outcome was dichotomized as a yes/no variable with a response >1 scored as some desire to discuss costs based on distribution of participant responses, since nearly 50% of the cohort chose the lowest possible value of 1, corresponding to “not at all.” We included in the regression model any variables from bivariate analyses that differed with a P <.05. Further, additional covariates of interest were included in the regression model. Statistical analyses were performed using SAS version 9.3 (SAS Institute, Cary, North Carolina).


 
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