In order to capture the elements of the report most important to patients we conducted a focus group with bladder cancer survivors of different backgrounds, professions, and oncologic stages. Harnessing the patient voice is a crucial element of our study design because we relied directly on the input, opinions, and iterative feedback of patients in order to determine layout and content of the patient centered report. Using a panel of clinician experts and integrating those survey results allowed us to ensure the report retained focus on important elements in the eyes of the physician. Conceptualizing the report as an opportunity to integrate the patient preferences with elements deemed key to the report by clinicians, we arrived at a report that balanced the input from both groups.
At our institution, many of the clinicians involved in the study are high volume urologic oncologists. This expertise among our providers may have created a ceiling effect in measurements of communication and empathy since these providers may be experienced in dealing with bladder cancer. In a pilot study of only 40 patients we may have also had difficulty capturing a significant difference in the number of patients able to describe their pathologic grade. Future work in larger groups of patients may help identify the impact of patient centered health related documents.
Notwithstanding these issues we are encouraged by our findings. Patients exposed to the patient centered pathology report are able to demonstrate improved retention of information about their cancer stage at one month follow up. A more patient focused document with an appropriate readability index makes cancer related pathologic data accessible to a wider audience. Interestingly, while distilled reports were welcomed by most patients, another subset preferred more information and suggested that the patient centered document contain more detailed information in future versions. Part of this interaction may be due to time spent with the patient by the clinician. Alternatively, some patients may have chosen to read their patient centered report at home and thereby spent more time learning about their cancer diagnosis. Many patients reported that the document provided a useful outline to share their diagnosis with their spouses, caregiver, or extended family thereby increasing the potential network for support. Identifying the consequences of the pathology report that promote improved understanding will continue to be a focus of our work and it is hard to imagine how a more well-informed patient can have negative consequences.
Patient centered communication is a valuable tool to promote improved understanding of diagnostic cancer information. Improved knowledge of pathologic cancer data may help patients by promoting informed decision-making which can help patients realize their treatment preferences and alleviate anxiety (1). Bladder cancer pathology on a biopsy lends itself well to structuring a patient-centered report given the relative simplicity of reporting requirements for bladder biopsy pathology. Studying the comparative effectiveness of a patient-centered pathology report for bladder cancer demonstrated improved understanding of cancer stage at one month follow up. For other cancers, however, this “translation” into patient-centered language and layout may not be as straightforward. For example, in prostate cancer multiple parameters of the pathology report must be communicated because each biopsy core possesses important prognostic information. A prostate biopsy includes information about anatomic location in the prostate, number and size of cores obtained from that location, grade of the cancer, and amount of the core involved with that cancer. Given the increased complexity, a patient-centered distillation of the biopsy report becomes a more complex task.
Patients want a summary that does not sacrifice too much detail at the cost of simplicity. In order to achieve the appropriate balance, patient input is essential. As we continue to integrate patient-centered approaches into oncologic care, keeping the patient’s (and caregivers) voice at the center is paramount. Efforts to study the impact of integrating patient centered communication and training for providers in oncology care are increasing (1) but more work needs to be done. We aim to expand this work to other cancers including colorectal and breast cancer, two common cancers with different synoptic reporting structures. Yet, by utilizing a patient-centered outcomes research approach we can be assured that the final products will allow us to optimize our ability to communicate important cancer related data to our patients and their families.
Written by: Matthew Mossanen and John L Gore
References:
1. Michael J. Barry, M.D., and Susan Edgman-Levitan, P.A. N Engl J Med 2012; 366:780-781March 1, 2012DOI: 10.1056/NEJMp1109283
2. Epstein RM, Duberstein PR, Fenton JJ, Fiscella K, Hoerger M, Tancredi DJ, Xing G, Gramling R, Mohile S, Franks P, Kaesberg P, Plumb S, Cipri CS, Street RL, Shields CG, Back AL, Butow P, Walczak A, Tattersall M, Venuti A, Sullivan P, Robinson M, Hoh B, Lewis L, Kravitz RL. Effect of a Patient-Centered Communication Intervention on Oncologist-Patient Communication, Quality of Life, and Health Care Utilization in Advanced CancerThe VOICE Randomized Clinical Trial. JAMA Oncol. Published online September 09, 2016. doi:10.1001/jamaoncol.2016.4373
Read the Abstract