Need to improve communication in breast cancer care.

Some challenges inherent in cancer care are obvious. We are acutely aware of the limitations of our interventions in many settings. What is less often considered is the adequacy of our care delivery, and the degree to which serious errors in care or communication may contribute to harm and suffering among our patients. In this issue, Mazor et al suggest that from the patient’s perspective such problems may be “relatively common, physically and emotionally harmful, and frequently unreported.“ Should the oncology community now sound the alarm? What can and should we learn about challenges in cancer care delivery and the patients’ experience from this study? In responding, we must first ask: Is this accurate? What types of problems are reported? What, if any, further research is needed, and how can we move forward to improve care? Mazor et al sought to assess the prevalence of serious problems in cancer care by identifying and interviewing patients within HMO networks in Georgia, Massachusetts, and Washington who had recently completed initial therapy for operable breast or colon cancer. They report that among 416 patients screened, 93 (22%), met eligibility criteria for the perception of a serious preventable error in care or communication. However, as the authors acknowledge, only 12 patients with colorectal cancer were recruited. This is essentially a study of problems experienced by insured patients with early-stage breast cancer. In general, these patients can expect a high cure rate, (80% or greater), they receive highly multidisciplinary care, and they face multiple difficult treatment decisions (including type of surgery and choice of adjuvant therapy). These data may not be generalizable to patients with advanced solid tumors, hematologic malignancies, or even other early-stage solid tumors. Restricting analysis to breast cancer, and including patients who declined participation or were unable to be contacted in the denominator, we find that among 539 patients identified with operable breast cancer, 81 (15%) reported experiencing major problems in care, communication, or both. At first glance, this suggests that serious problems in breast cancer care may be common and urgent efforts to improve safety are required. However, if we consider analysis at the level of the individual encounter or intervention a slightly different impression of the problem emerges. Perhaps serious errors are infrequent, but occur sufficiently in the course of multiple clinical encounters and interventions that at least one error is eventually experienced by a substantial percentage of patients. Part of the challenge then may lie in identification and response to these rare events when they occur. Most patients with breast cancer experience a complex course of care in the first year after diagnosis. A patient may first interact one or more times with their primary care provider in the process of initial screening, work-up, and referral to oncology specialists. They might have one or more procedures for diagnosis, multiple surgical consultations, one or more surgeries (including reconstruction), and multiple surgical follow-up visits. Most patients will consult radiation oncology and may undergo up to 6 weeks of daily radiation. Virtually all patients will discuss adjuvant (or neoadjuvant) systemic therapy with a medical oncologist. Those undergoing chemotherapy will be treated with four to 16 chemotherapy infusions depending on the regimen (perhaps as many as 30 for patients with human epidermal growth factor receptor 2–positive breast cancer). The majority will also be treated with endocrine therapy and have several follow-up visits within the first year. In addition, patients may undergo several imaging studies, physical therapy, genetics consultation, nutritional consultation, and counseling with a social worker. Although the exact mix of multidisciplinary care varies among patients, assuming, conservatively, 20 medical encounters per patient and 539 patients, we might estimate that there were 81 reported problems among 10,780 encounters, or 0.8%. This figure includes diverse problems with different implications for prevention, impact, and response. Nearly 25% related to concerns over late diagnosis, presumably before the patient had entered the cancer care system. An additional 50% were issues of communication, such as failure to adequately prepare patients for adverse effects of chemotherapy. While it is helpful to understand the cumulative impact of these problems on our patients, it is important to recognize that the incidence of any specific problem in care delivery may be low. The reported rate of serious problems should be considered within the context of known complications from breast cancer therapy reported in the medical literature. For example, infection rates following mastectomy may range from 4% to 12%. Radiation pneumonitis has been reported in up to 3% of patients with breast cancer. Chemotherapy can cause severe nausea and vomiting, mouth sores, or infection in up to 3% of patients. It is possible that rare but predictable complications (of which those listed here are but a small sample) may contribute to patients experience of major problems in care, particularly if they are not discussed in advance or addressed adequately when they occur. In the communication arena, an extensive body of literature supports the notion that we have substantial room for improvement. JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 30 NUMBER 15 MAY 2