Regional Language Support for Patient-inclusive Decision Making in Breast Cancer Pathology Domain

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

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

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e19157 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e19157-e19157

Author(s):

John L. Gore ◽

Sara Javid ◽

Elizabeth Austin ◽

Mark Kilgore ◽

Elizabeth Parker ◽

...

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Shared Decision Making ◽

Cancer Care ◽

Self Efficacy ◽

Pathology Report ◽

Shared Decision ◽

Patient Centered ◽

Standard Report ◽

Pathology Reports

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.

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Breast Cancer Pathways Program Impact on Patient Shared Decision Making and Experience in Academic and Community Practice

Case Medical Research ◽

10.31525/ct1-nct04297384 ◽

2020 ◽

Author(s):

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Shared Decision Making ◽

Community Practice ◽

Shared Decision ◽

Program Impact ◽

Cancer Pathways

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Evaluation of the Use of Shared Decision Making in Breast Cancer: International Survey

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18042128 ◽

2021 ◽

Vol 18 (4) ◽

pp. 2128

Author(s):

Marta Maes-Carballo ◽

Manuel Martín-Díaz ◽

Luciano Mignini ◽

Khalid Saeed Khan ◽

Rubén Trigueros ◽

...

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Shared Decision Making ◽

Health Professionals ◽

Cross Sectional Study ◽

Shared Decision ◽

Online Questionnaire ◽

Cross Sectional ◽

Professional Societies ◽

New Policies

Objectives: To assess shared decision-making (SDM) knowledge, attitude and application among health professionals involved in breast cancer (BC) treatment. Materials and Methods: A cross-sectional study based on an online questionnaire, sent by several professional societies to health professionals involved in BC management. There were 26 questions which combined demographic and professional data with some items measured on a Likert-type scale. Results: The participation (459/541; 84.84%) and completion (443/459; 96.51%) rates were high. Participants strongly agreed or agreed in 69.57% (16/23) of their responses. The majority stated that they knew of SDM (mean 4.43 (4.36–4.55)) and were in favour of its implementation (mean 4.58 (4.51–4.64)). They highlighted that SDM practice was not adequate due to lack of resources (3.46 (3.37–3.55)) and agreed on policies that improved its implementation (3.96 (3.88–4.04)). The main advantage of SDM for participants was patient satisfaction (38%), and the main disadvantage was the patients’ paucity of knowledge to understand their disease (24%). The main obstacle indicated was the lack of time and resources (40%). Conclusions: New policies must be designed for adequate training of professionals in integrating SDM in clinical practice, preparing them to use SDM with adequate resources and time provided.

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Erratum to: Does a tailored, multilevel implementation programme help clinicians to apply shared decision-making in breast cancer care? A before-after study

BJS Open ◽

10.1093/bjsopen/zrab008 ◽

2021 ◽

Vol 5 (3) ◽

Author(s):

H van Veenendaal ◽

H R Voogdt-Pruis ◽

D T Ubbink ◽

C G J M Hilders

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Shared Decision Making ◽

Cancer Care ◽

Shared Decision ◽

Breast Cancer Care ◽

Implementation Programme

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Shared decision making for supporting women’s decisions about breast cancer screening

Cochrane Database of Systematic Reviews ◽

10.1002/14651858.cd013822 ◽

2020 ◽

Author(s):

Paula Riganti ◽

M. Victoria Ruiz Yanzi ◽

Camila Micaela Escobar Liquitay ◽

Karin S Kopitowski ◽

Juan VA Franco

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Cancer Screening ◽

Breast Cancer Screening ◽

Shared Decision Making ◽

Shared Decision

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Shared decision-making for breast cancer patients

Early Breast Cancer ◽

10.1201/b13937-32 ◽

2013 ◽

pp. 311-321

Author(s):

Catharine Clay ◽

Alice Andrews ◽

Dale Vidal

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Cancer Patients ◽

Shared Decision Making ◽

Shared Decision ◽

Breast Cancer Patients

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The “Preparation for Shared Decision-Making” Tool for Women With Advanced Breast Cancer: Qualitative Validation Study

Journal of Participatory Medicine ◽

10.2196/16511 ◽

2019 ◽

Vol 11 (4) ◽

pp. e16511

Author(s):

Domitilla Masi ◽

Amalia Elvira Gomez-Rexrode ◽

Rina Bardin ◽

Joshua Seidman

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Advanced Breast Cancer ◽

Shared Decision Making ◽

Validation Study ◽

Clinical Care ◽

Advanced Breast ◽

Future Research ◽

Shared Decision ◽

Clinical Workflow

Background The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool’s implementation in the clinical workflow and its impact on patient outcomes.

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