Practices across the U.S. are increasingly relying on self-reported data from patients to measure quality of care, and research out of the Netherlands has found women with breast cancer are able to report overwhelmingly accurate information about treatment up to a year and a half after surgery.
“Medical records are still considered the gold standard to obtain reliable information on breast cancer treatment data,” corresponding author Perla J. Marang-van de Mheen, PhD, and colleagues wrote in Clinical Breast Cancer. “However, this is time-consuming, and with increased use of patient-reported outcome measures as part of routine clinical practice as well as for research, self-reported treatment data could be a feasible alternative if the self-reported information is sufficiently reliable.”
The importance of shared decision-making is growing in today’s healthcare climate, Marang-van de Mheen, of the department of medical decision making at Leiden University Medical Center, said—and that could have both positive and negative implications for self-reported data.
On one hand, the authors wrote, breast cancer patients are now receiving more information than ever about their disease, procedures and treatment options, meaning they’re more involved in their health plan and are likely to recall information more accurately. But with so many options, they said, it’s also possible patients will become overwhelmed more easily and forget.
“Patients with breast cancer receive even more information to process than they did in the past, which may limit the accurateness by which patients recall their treatment data,” Marang-van de Mheen et al. wrote.
In an effort to assess the accuracy of self-reported data in that population, the research team distributed questionnaires to all patients with stage I, II and III breast cancer who’d received treatment at any of five hospitals in the west of the Netherlands between nine and 18 months prior. Three hundred-fifty women completed the survey, which questioned patients on their type of surgery and whether they received chemotherapy, endocrine therapy or radiation therapy. The authors also asked women to note the sentinel node biopsy performed, the pathologic result and if they received an axillary lymph node dissection.
Women were able to identify—with a sensitivity and specificity of more than 95 percent—the types of surgeries and therapies they received, Marang-van de Mheen and co-authors reported. Accuracy of sentinel node biopsy, including the positive or negative pathologic result, and axillary lymph node dissection performed was more moderate across the board, with a lack of agreement noted most among patients who’d undergone endocrine therapy. Age had no bearing on results, the authors said.
“This could be explained by the previously proven effect of endocrine therapy on cognition and memory,” the team wrote. “The question is whether information about these treatment regimens is not remembered well by patients, or not understood, or not explained correctly by doctors.”
Marang-van de Mheen et al. said future research should focus on just that question.
“This is likely to improve both the information provision to patients and to contribute to patients being able to participate in shared decision-making,” they wrote. “This is relevant for clinicians given the time spent explaining these procedures, and for researchers to help them decide which information to obtain from patients or medical records.”