Shared decision making in cancer care requires better communication and understanding of pathology reports

BMJ ◽  
2019 ◽  
pp. l6561 ◽  
Author(s):  
Murali Varma ◽  
Varsha Shah
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Shared Decision ◽  
Pathology Reports

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 ◽  
...  
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.

scholarly journals An integrated knowledge translation approach to develop a shared decision-making strategy for use by Inuit in cancer care: a qualitative study

2019 ◽  
Vol 26 (3) ◽  
Author(s):  
J. Jull ◽  
A. Hizaka ◽  
A. J. Sheppard ◽  
A. Kewayosh ◽  
P. Doering ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Knowledge Translation ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Community Support ◽  
Integrated Knowledge Translation ◽  
Shared Decision ◽  
Care Providers ◽  
Integrated Knowledge

Background In relation to the general Canadian population, Inuit face increased cancer risks and barriers to health services use. In shared decision-making (sdm), health care providers and patients make health care decisions together. Enhanced participation in cancer care decisions is a need for Inuit. Integrated knowledge translation (kt) supports the development of research evidence that is likely to be patient-centred and applied in practice.Objective Using an integrated kt approach, we set out to promote the use of sdm by Inuit in cancer care.Methods An integrated kt study involving researchers with a Steering Committee of cancer care system partners who support Inuit in cancer care (“the team”) consisted of 2 theory-driven phases:■ using consensus-building methods to tailor a previously developed sdm strategy and developing training in the sdm strategy; and■ training community support workers (csws) in the sdm strategy and testing the sdm strategy with community members.Results The team developed a sdm strategy that included a workshop and a booklet with 6 questions for use by csws with patients. The sdm strategy (training and booklet) was finalized based on feedback from 5 urban-based Inuit csws who were recruited and trained in using the strategy. Trained csws were matched with 8 community members, and use of the sdm strategy was assessed during interviews, reported as 6 themes. Participants found the sdm strategy to be useful and feasible for use.Conclusions An integrated kt approach of structured research processes with partners developed a sdm strategy for use by Inuit in cancer care. Further work is needed to test the sdm strategy.

Use and usefulness of the “know yourself” tool in outpatient cancer care.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21558-e21558
Author(s):  
Zackary Berger ◽  
Pooja Yesantharao ◽  
Alice Zhou ◽  
Amanda Blackford ◽  
Thomas J. Smith ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Tool Use ◽  
Patient Preference ◽  
Cancer Care ◽  
Preference Assessment ◽  
Cancer Center ◽  
Shared Decision ◽  
Cancer Types ◽  
National Coalition

e21558 Background: Patient-physician communication is important to cancer care. The National Coalition for Cancer Survivorship developed the Know Yourself Tool, a 2-page form, to improve patients’ understanding of goals of care and clinicians’ understanding of patients’ priorities/expectations. We assessed the Tool’s use and usefulness. Methods: This mixed-methods study at an academic cancer center recruited 1 medical, 1 radiation, and 1 surgical oncologist for each of 5 cancer types: breast, lung, gastrointestinal, genitourinary, head & neck. For each clinician (n = 15), we recruited 2 control patients to observe usual care (n = 30) and then 4 intervention patients who were provided the Tool (n = 60); eligible patients were at a decision point in their care. Data were collected for the decision making visit via patient and physician post-visit surveys analyzed descriptively and visit recordings/transcripts to analyze: 1) option presentation 2) patient preference assessment 3) shared decision making elements 4) patient question asking opportunities. Results: Of 90 patients, 39 (43%) were female and 75 (83%) were white. Of the 60 intervention patients, 42 (70%) completed a post-visit survey: 15 (36% of respondents) reported using the Tool and 13 (31%) discussing the Tool. Nearly half (49%) reported the Tool helped them prepare for follow-up visits and know the importance of their perspective in decision making. Patients reported the Tool was easy to use (76%) and would recommend the Tool to others (52%). Clinicians reported on Tool use for 24 visits, finding it most helpful in identifying areas of concern (74%). Based on visit transcripts, physicians were more likely to describe certain options as more appropriate than others with intervention vs control patients. However, physicians were less likely to assess patient preference, engage in shared decision making behaviors, and provide opportunities for patients to ask questions with intervention vs control patients. Conclusions: Use and usefulness of the Know Yourself Tool was limited. Further work should identify barriers to Tool use, determine if there are specific subgroups for whom the Tool would be more useful, and further elucidate how the Tool affects patient-clinician interactions.

Shared decision making in cancer care

2005 ◽  
Vol 9 (2) ◽  
pp. 54-58 ◽  
Author(s):  
Phyllis Butow ◽  
Martin Tattersall
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Shared Decision

scholarly journals A Systematic Literature Review of Shared Decision Making in Cancer Care (Preprint)

2018 ◽  
Author(s):  
Colleen A. McHorney ◽  
Lindsey T. Murray ◽  
Dayo Jagun ◽  
Jennifer Whiteley ◽  
Miriam Kimel ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Quality Of Care ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Quantitative Measure ◽  
Shared Decision ◽  
Care Providers ◽  
Clinician Communication

BACKGROUND Shared decision making (SDM) is a process in which health care providers and patients relate to and influence each other as they collaborate in making decisions about patients’ health care. Hypothesized as a means to improve quality of care, successful applications of SDM in routine cancer care have not been widely documented. OBJECTIVE The objective of this study was to examine the literature to determine if elements of SDM implementation between cancer patients and their clinicians were more or less successful at improving the quality of care and health outcomes. METHODS A systematic literature search of SDM approaches and outcomes in cancer care was conducted using PubMed and EMBASE. An integrative model for SDM was used to classify elements included in SDM intervention studies and the resulting outcomes. RESULTS From 1,018 unique publications, 23 articles meeting eligibility criteria were included. Only three studies addressed elements of patient-clinician interaction as part of the study objectives. Interventions included decision aid (DA) evaluation (n=22) and clinician communication training (n=1). SDM elements commonly included were: defining/explaining the problem (n=23); presenting options (n=19); discussing pros and cons (n=17); assessing patient priorities and preferences (n=17); clinician knowledge and recommendations (n=15); and making or deferring treatment decisions (n=12). The most frequently-measured outcomes were patient-reported outcomes including treatment preference or decision (n=12), decisional conflict (n=10), patient satisfaction (n=10), patient participation (n=9), and patient knowledge (n=7). No clear patterns demonstrating relationships between SDM elements and outcomes were identified. Information on how patients and clinicians utilized DA information to promote SDM was limited. CONCLUSIONS Evaluation of SDM in cancer care has been increasing. However, the term “SDM” was generally applied to studies that focused on the development and/or evaluation of DAs which limited the current analyses to a review of SDM elements as part of the DAs. Most studies did not include a qualitative or quantitative measure of SDM specific to patient-clinician communication and interaction. Instead, there was an underlying assumption that SDM occurred organically with DA implementation. Without a qualitative or quantitative measure of SDM, identification of successful SDM elements and their relationships to patient outcomes remains unclear. Additional research is warranted on SDM implementation and measurement in real-world cancer care settings.

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

2019 ◽  
Vol 8 (3) ◽  
pp. 8392-8399
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
English Language ◽  
Shared Decision ◽  
Language Support ◽  
Regional Language ◽  
Cancer Pathology ◽  
Pathology Reports ◽  
Breast Cancer Pathology

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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