Patient-centered pathology reports for breast cancer care: Interim results of a randomized pilot study.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19157-e19157
Author(s):  
John L. Gore ◽  
Sara Javid ◽  
Elizabeth Austin ◽  
Mark Kilgore ◽  
Elizabeth Parker ◽  
...  

e19157 Background: Receiving a new cancer diagnosis event is a daunting event, quickly followed by complex decision-making between patients and care teams. In order for patients to fully engage in shared decision-making with their providers, they must have access to understandable, patient-centered information that empowers them to take an active role. Yet cancer pathology reports currently target providers and are marred by complex medical terminology. To address this gap, we designed and piloted patient-centered pathology reports (PCPRs) for breast cancer surgical pathology. We hypothesized that PCPRs would result in patients having greater pathology knowledge and decisional self-efficacy. Methods: PCPRs were designed with continuous guidance from breast surgeons, pathologists, and patient advocates with the goal of providing a supplemental tool to translate standard pathology reports to layman’s terms for patients. PCPRs were built into the electronic medical record and tested for quality and accuracy over a 4-month period. Participants were recruited from the clinical practices of two breast surgeons and randomized to receive either the PCPR and standard pathology report or standard pathology report alone. Patients were surveyed at baseline and one month after to assess their breast cancer knowledge and ratings of confidence (scale 1-5) and decisional self-efficacy (DSE) for treatment decision-making (scale 0-100). Results: Of a planned 40 pilot patients, 30 have been enrolled, randomized (20 standard report patients, 10 PCPR patients), and have follow up data. Evaluation of patient knowledge showed that compared with the control group, patients who received a PCPR had similar knowledge of the important elements of their report (p = 0.10-p = 0.69) with greater specificity for those report elements. Confidence in their diagnosis slightly favored PCPR recipients (confidence rating mean 4.00 vs. 3.77 for control patients, p = 0.67). Patients receiving the PCPR had better DSE immediately after receipt of the pathology report than standard report patients (DSE 96.0 vs. 82.2, respectively, p = 0.05) with a more attenuated DSE difference one month later (DSE 87.3 vs. 79.2, respectively, p = 0.35). Conclusions: This interim analysis suggests that providing breast cancer patients with patient-centered pathology reports may contribute to an improved ability to engage in shared decision-making. Confirming these results with complete pilot data could inform a larger multicenter study to validate their effectiveness in clinical cancer care.

2019 ◽  
Vol 8 (3) ◽  
pp. 8392-8399

A Clinical Decision Support system (CDSS) is an application that analyzes data to help healthcare providers to make decisions and improve patient care. Clinicians use the CDSS to perform their routine tasks with computer-assistance. In the past, decision-making using CDSS was primarily oriented towards Clinicians but in recent times, shared decision-making with the patient is advocated. Shared decision-making focuses on encouraging patients to become informed and involved about their health-concerns and make right choices in discussion with expert Clinicians. In India, Breast cancer is the number one killer disease among women. The fast-growing breast cancer patient population demands development of a CDSS for the domain with patient-inclusive features. Medical documents generated in English by Medical practitioners may be understood only by patients with adequate medical knowledge and proficiency in English language. To benefit the regional-language patient population, a CDSS was developed with patient-inclusive features such as Risk assessment questionnaires and Pathology reports presented in Tamil to benefit the regional language-literate patients in the state of Tamilnadu. Translation resources for the domain such as Lexicon and Bilingual Dictionary are generated and used in Machine Translation (MT) of the reports in the CDSS. Translation of Pathology reports is performed by applying Natural Language Processing methods and Phrase-based translation approach and is refined using Synsets. The machine-translation by the CDSS was evaluated by comparing the CDSS output with output from a translation tool Anuvadaksh developed by Department of Information Technology, Government of India, and Google Translate. The outputs were also scrutinized by regional language experts and medical experts. The developed CDSS prototype is a pioneering effort to compile medical language resources for breast cancer pathology domain, and to present details to the patient in a language familiar to her. The regional language support would improve co-operation between the Clinician and patients for shared decision-making and enhance understanding in patients who would otherwise be passive due to the English language barrier. The CDSS with regional language could be used in hospitals in Tamilnadu and the implementation could be extended to other regional languages of India in the future


2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 47-47
Author(s):  
Sophia Kustas Smith ◽  
Kelly E. Westbrook ◽  
Kristin MacDermott ◽  
Matthew Roger LeBlanc ◽  
Sathya Amarasekara ◽  
...  

47 Background: Evidence shows that shared decision making is effective in improving the quality of end of life care, and that it rarely happens; new interventions are needed. Four Conversations is an evidence-based, online curriculum that facilitates shared decision making. This presentation will report the impact of Four Conversations on key outcomes. Methods: Individuals with metastatic breast cancer and caregivers are being recruited nationally. Consenting participants are randomized 1:1 to the treatment or wait-listed control arm. Treatment arm participants access content online; required activities included viewing interactive videos and completing workbook activities. Surveys are administered at Baseline, Week-4, and Week-8 via REDCap to assess for: decision making self-efficacy and conflict; and program satisfaction. An independent-samples t-test was conducted to compare change in decision making outcomes in treatment and usual care conditions at Week-4. A paired-samples t-test was used to access for changes in outcomes from Baseline to Week-8 among the treatment arm. Results: Participants (n = 138) were: mean age 53.2 (11.8) years; 96% female; 91% white; 72% married. There was significant improvement in decision making self-efficacy and reduction in conflict among the treatment arm at follow-up (p < .05). There was no significant change in decision making self-efficacy and conflict scores for treatment and wait-listed control conditions at the end of the intervention (p > .05). Among treatment arm participants who did not already have an advanced care directive, most (56%) completed one. Most participants (88%) would recommend Four Conversations to others and felt that the program better prepared them to make better decisions. Conclusions: While these results are preliminary (i.e., data collection continues through 9/2017), they suggest that Four Conversations may effect decision-making outcomes for metastatic breast cancer patients and caregivers. Additional research is recommended with larger and more diverse samples following completion of this study. Clinical trial information: NCT02944344.


2019 ◽  
Vol 4 (2) ◽  
pp. 238146831988165
Author(s):  
Marilyn M. Schapira ◽  
Arshia Faghri ◽  
Elizabeth A. Jacobs ◽  
Kathlyn E. Fletcher ◽  
Pamela S. Ganschow ◽  
...  

Background. Communication in the breast cancer treatment consultation is complex. Language barriers may increase the challenge of achieving patient-centered communication and effective shared decision making. Design. We conducted a prospective cohort study among Spanish- and English-speaking women with stage 0 to 3 breast cancer in two urban medical centers in the Midwestern United States. Patient centeredness of care and decisional conflict were compared between Spanish- and English-speaking participants using the Interpersonal Processes of Care (IPC) and Decision Conflict Scale (DCS), respectively. Clinician behaviors of shared decision making were assessed from consultation audio-recordings using the 12-item Observing Patient Involvement in Decision Making (OPTION) scale. Multivariate regression analyses were conducted to control for differences in baseline characteristics and clinician specialty. Results. Fifteen Spanish-speaking and 35 English-speaking patients were enrolled in the study. IPC scores (median, interquartile range [IQR]) were higher (less patient centered) in Spanish- versus English-speaking participants in the domains of lack of clarity (2.5, 1-3 v. 1.5, 1-2), P = 0.028; perceived discrimination (1.1, 1-1 v. 1.0, 1-1), P = 0.047; and disrespectful office staff (1.25, 1-2 v. 1.0, 1-1), P < 0.0005 (Wilcoxon rank-sum test). OPTION scores (median, IQR) were lower in Spanish- versus English-speaking participants (21.9, 17.7-27.1 v. 31.3, 26.6-39.6), P = 0.001 (Wilcoxon rank-sum test). In multivariate analysis, statistically significant differences persisted in the IPC lack of clarity and disrespectful office staff between Spanish- and English-speaking groups. Conclusions. Our findings highlight challenges in cancer communication for Spanish-speaking patients, particularly with respect to perceived patient centeredness of communication. Further cross-cultural studies are needed to ensure effective communication and shared decision making in the cancer consultation.


2020 ◽  
Vol 13 (8) ◽  
Author(s):  
Reza Negarandeh ◽  
Zahra Yazdani ◽  
Rebecca Lehto ◽  
Marzieh Lashkari

Background: There is increasing awareness that patients with cancer desire information as well as strategies to support their capacity to actively participate in informed decision-making. This study will evaluate outcomes of using a question prompt list (QPL) on shared decision making (SDM), decision-making self-efficacy, and preferences for participation among Iranian women with breast cancer, who are referred to a Tehran Comprehensive Cancer Center. Methods: This research will utilize a randomized controlled trial. The research population is patients with breast cancer, who are referred to the Oncology Radiotherapy Unit, Imam Khomeini Hospital, Tehran following tumor resection. After completing baseline surveys (demographics and health survey, decision self-efficacy scale, and control preferences scale), participants will be randomized into either a control or a treatment group based on block design. The treatment group will receive routine care along with the QPL that provides information on decision-making relative to treatment options (chemotherapy, radiotherapy, or both treatments) following meeting their oncologist. They will be trained to use the QPL which they will use to ask questions about their treatment choices when meeting with their physician or through computer-mediated modalities such as WhatsApp or other social messengers. These patients will have the opportunity to think about the treatment options and will be referred for medical treatment following their decision. The control group will receive routine care (physician discussion and receipt of treatment information). Following decision-making regarding treatment, the questionnaires will be administered (9-item SDM questionnaire, decision self-efficacy scale, and control preferences scale). Data will be analyzed using SPSS 16. Discussion: The current study will provide experimental evidence for the preliminary efficacy or lack of an intervention that has the potential to improve shared decision-making outcomes, a better understanding of personal preferences related to decision-making and self-efficacy in medical decision-making for Iranian patients with breast cancer.


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