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PURPOSE: There is a need to improve the coordination of care and communication between primary care physicians (PCPs) and oncology after completion of initial cancer treatment. We sought to evaluate PCP experiences and perspectives in cancer survivorship and to identify practical opportunities to improve care within an integrated health care system with a shared electronic health record (EHR). METHODS: We conducted a self-administered, anonymous, electronic survey of PCPs in practices affiliated with an academic medical center to evaluate practices, the sense of preparedness, and preferences in the delivery of survivorship care and communication with oncology. RESULTS: One hundred seventeen of 225 PCPs responded (response rate, 52%). A majority were engaged in survivorship care, with 94% reporting managing psychological sequelae of cancer, 84% managing chronic physical complications, 71% screening for cancer recurrence, and 60% screening for late complications. However, few PCPs felt prepared to manage these issues: 65% felt unprepared to screen for late complications, and 36% felt unprepared to screen for recurrence. Common barriers to survivorship care were uncertainty about delegation of responsibility (73%) and a lack of training (72%). PCPs expressed strong interest in survivorship care plans, preferring active tracking of ongoing care needs and delegation of care responsibility in the EHR active problem list over traditional summary documents. CONCLUSION: Most PCPs are engaged in cancer survivorship care but report barriers to optimal care delivery. Opportunities to improve care could include targeted education to increase preparedness to deliver survivorship care, and optimization of communication among providers, including active survivorship care plans in the EHR.

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.

Introduction: Breast cancer treatment costs are rising, and identification of high-value oncology treatment strategies is increasingly needed. We sought to determine the potential cost savings associated with an evidence-based radiation treatment (RT) approach among women with early-stage breast cancer treated in the United States. Patients and Methods: Using the National Cancer Database, we identified women with T1-T2 N0 invasive breast cancers treated with lumpectomy during 2011. Adjuvant RT regimens were categorized as conventionally fractionated whole-breast irradiation, hypofractionated whole-breast irradiation, and omission of RT. National RT patterns were determined, and RT costs were estimated using the Medicare Physician Fee Schedule. Results: Within the 43,247 patient cohort, 64% (n = 27,697) received conventional RT, 13.3% (n = 5,724) received hypofractionated RT, 1.1% (n = 477) received accelerated partial-breast irradiation, and 21.6% (n = 9,349) received no RT. Among patients who were eligible for shorter RT or omission of RT, 57% underwent treatment with longer, more costly regimens. Estimated RT expenditures of the national cohort approximated $420.2 million during 2011, compared with $256.2 million had women been treated with the least expensive regimens for which they were safely eligible. This demonstrated a potential annual savings of $164.0 million, a 39% reduction in associated treatment costs. Conclusion: Among women with early-stage breast cancer after lumpectomy, use of an evidence-based approach illustrates an example of high-value care within oncology. Identification of high-value cancer treatment strategies is critically important to maintaining excellence in cancer care while reducing health care expenditures.

Objective: Pharmaceutical manufacturers sponsor drug-specific patient assistance programs that provide eligible patients with financial assistance, either in the form of providing the drug free of charge or copayment assistance. Describing these programs and determining who receives assistance is an important first step in understanding the impact and role of financial assistance in cancer care. Our objective was to describe eligibility criteria and benefits for cancer-specific, manufacturer-sponsored patient assistance programs. Methods: We conducted a prospective review of patient assistance program Web sites and called patient assistance program telephone hotlines from the perspective of a patient or caregiver requesting program details. Results: We identified 24 manufacturers with patient assistance programs, covering 87% of Food and Drug Administration–approved oncology drugs. For free drug programs, the average maximum annual income for qualification was $86,279. For copayment assistance programs, the average was $104,790. Thirty-five percent of free drug programs and 53% of copayment assistance programs declined to provide details on how financial need was determined. None of the programs shared details on patient usage statistics. Conclusion: Variation exists in the quality and quantity of data available to patients seeking financial assistance for cancer treatment via manufacturer Web sites and hotlines. Greater transparency among patient assistance programs would enhance utility for patients and help to determine the net impact on costs and adherence.

PURPOSE: Financial toxicity is a well-recognized adverse effect of cancer care, yet little is known about how women consider treatment costs when facing preference-sensitive decisions for breast cancer surgery or how surgical treatment choice affects financial harm. We sought to determine how financial costs and burden relate to decisions for breast cancer surgery. METHODS: Women (≥ 18 years old) with a history of breast cancer were recruited from the Army of Women and Sisters Network to complete an 88-item electronic survey. Descriptive statistics and regression analysis were used to evaluate the impact of costs on surgical decisions and financial harm after breast cancer surgery. RESULTS: A total of 607 women with stage 0 to III breast cancer were included. Most were white (90%), were insured privately (70%) or by Medicare (25%), were college educated (78%), and reported household incomes of more than $74,000 (56%). Forty-three percent underwent breast-conserving surgery, 25% underwent mastectomy, 32% underwent bilateral mastectomy, and 36% underwent breast reconstruction. Twenty-eight percent reported that costs of treatment influenced their surgical decisions, and at incomes of $45,000 per year, costs were prioritized over breast preservation or appearance. Overall, 35% reported financial burden as a result of their cancer treatment, and 78% never discussed costs with their cancer team. When compared with breast-conserving surgery, bilateral mastectomy with or without reconstruction was significantly associated with higher incurred debt, significant to catastrophic financial burden, treatment-related financial hardship, and altered employment. Among the highest incomes, 65% of women were fiscally unprepared, reporting higher-than-expected (26%) treatment costs. CONCLUSION: Cancer treatment costs influenced decisions for breast cancer surgery, and comparably effective surgical treatments differed significantly in their risk of patient-reported financial burden, debt, and impact on employment. Cost transparency may inform preference-sensitive surgical decisions and improve patient-centered care.

PURPOSE: Fear of cancer recurrence is highly prevalent among adult survivors of cancer. The role of fear of recurrence in the emotional distress of survivors of cancer, as well as health behaviors that may directly affect their health, remains unclear. To advance oncology practice, this study sought to examine the extent to which fear of recurrence stemming from physical symptoms accounts for emotional distress in a large sample of adult survivors of cancer and to extend the model to explain postdiagnosis self-reported health behavior change. METHODS: In 2016, 258 survivors of cancer at an academic hospital completed a survey of psychosocial needs. Items assessed physical symptoms (checklist), fear of cancer recurrence (Assessment of Survivor Concerns), emotional distress (anxiety and depressed mood), and health behaviors (current alcohol use, physical activity, diet, and sunscreen use, as well as changes after cancer diagnosis) informed by National Comprehensive Cancer Network survivorship guidelines. Indirect effects regression models accounting for relevant covariates (age and treatment history) used 5,000-iteration bootstrapping. RESULTS: Higher fear of cancer recurrence was associated with greater number of physical symptoms ( P < .001), greater emotional distress ( P < .05), lower moderate or vigorous physical activity ( P < .05), higher sunscreen use ( P < .05), and postdiagnosis increases in alcohol use ( P < .01) and reductions in physical activity ( P < .01). Fear of cancer recurrence models accounted for almost half of the variance in distress of survivors of cancer ( R2 = 0.44, P < .001) and, to a lesser yet significant extent, changes in alcohol consumption ( R2 = 0.09, P < .001) and physical activity ( R2 = 0.06, P = .003). CONCLUSION: Fear of cancer recurrence plays a central role in the emotional distress and key health behaviors of survivors of cancer. These findings support fear of cancer recurrence as a potential target for emotional health and health behavior change interventions.

The authors found that cost-related medication nonadherence was prevalent among patients with cancer who sought financial assistance.

As the need for patient participation in biospecimen and correlative research increases, challenging ethical and potentially legal questions are emerging.

Patients who decline conventional cancer therapy yet seek to continue follow-up while pursuing alternative therapy can pose an ethical challenge. The potential benefits and harms of an ongoing clinical relationship need be assessed on a case-by-case basis. Ongoing efforts at communicating, understanding the patient’s basis for decision making, and seeking to negotiate evidence-based care that is respectful of the patient’s preferences may improve outcomes.13 However, respect for the patient’s autonomy does not require support for inappropriate care and should not require that the oncologist check his or her professional judgment at the door.

In an era of guideline propagation, this case helps raise the question, Does quality cancer care now require that we always follow guidelines exactly, or do some circumstances still require a more individualized approach?