Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Masi D

PROVIDER: S-EPMC7434058 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Masi Domitilla D Gomez-Rexrode Amalia Elvira AE Bardin Rina R Seidman Joshua J

Journal of participatory medicine 20191220 4

<h4>Background</h4>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 ...[more]

PMID: 33055071

Similar Datasets

Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.

Project description:PurposeFertility preservation (FP) is an important issue for young survivors of breast cancer. Although international guidelines recommend pre-treatment fertility counseling for women with breast cancer, there is no standardized protocol or referral system for FP in South Korea. There are also barriers to discussing FP that make patient-centered decision making difficult. This study aimed to develop a shared decision making program for FP and compare the rates of FP procedures between the usual care and shared decision making groups. We hypothesized that multidisciplinary shared decision making for FP would increase the rate of FP procedures and patient satisfaction.MethodsThe multidisciplinary shared decision making for FP in young women with breast cancer (MYBC) is a multicenter, clustered, stepped-wedge, randomized trial. A total of 1100 patients with breast cancer, aged 19-40 years, from nine hospitals in South Korea, will be enrolled. They will be randomized at the institutional level and assigned to usual care and shared decision making groups. Four institutions, each of which can recruit more than 200 patients, will each become a cluster, whereas five institutions, each of which can recruit more than 50 patients, will become one cluster, for a total of five clusters. The shared decision making groups will receive multidisciplinary programs for FP developed by the investigator. The primary outcome is the rate of FP procedures; secondary outcomes include fertility results, satisfaction, and quality of life. Outcomes will be measured at enrollment, treatment initiation, and the 1-, 3-, and 5-year follow-ups after starting breast cancer treatment.DiscussionA multidisciplinary shared decision making program for FP is expected to increase fertility rates and satisfaction among young patients with breast cancer. This study will provide the evidence to implement a multidisciplinary system for patients with breast cancer.Trial registrationClinicalTrials.gov Identifier: NCT05139641. Registered on December 1, 2021.

Project description:BackgroundThe pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed.ObjectiveThe objective of this study was to develop a web-based shared decision-making tool for helping patients with breast cancer make decisions on fertility preservation.MethodsWe used the action research cycle of observing, reflecting, planning, and acting to develop a web-based shared decision-making tool. The following four phrases were applied: (1) observe and reflect-collect and analyze the decision-making experiences of patients and health care providers; (2) reflect and plan-apply the initial results to create a paper design and modify the content; (3) plan and act-brainstorm about the web pages and modify the content; (4) act and observe-evaluate the effectiveness and refine the website's shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale.ResultsFive major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients' and health providers' needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation.ConclusionsWe have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians.Trial registrationClinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910.

Project description:Rationale & objectiveGreater understanding of the challenges to shared decision making about treatment of advanced chronic kidney disease (CKD) is needed to support implementation of shared decision making in clinical practice.Study designQualitative study.Setting & participantsPatients aged≥65 years with advanced CKD and their clinicians recruited from 3 medical centers participated in semi-structured interviews. In-depth review of patients' electronic medical records was also performed.Analytical approachInterview transcripts and medical record notes were analyzed using inductive thematic analysis.ResultsTwenty-nine patients (age 73±6 years, 66% male, 59% White) and 10 of their clinicians (age 52±12 years, 30% male, 70% White) participated in interviews. Four themes emerged from qualitative analysis: (1) competing priorities-patients and their clinicians tended to differ on when to prioritize CKD and dialysis planning above other personal or medical problems; (2) focusing on present or future-patients were more focused on living well now while clinicians were more focused on preparing for dialysis and future adverse events; (3) standardized versus individualized approach to CKD-although clinicians tried to personalize care recommendations to their patients, the patients perceived their clinicians as taking a monolithic approach to CKD that was predicated on clinical practice guidelines and medical literature rather than the patients' lived experiences with CKD and personal values and goals; and (4) power dynamics-patients described cautiously navigating a power differential in their therapeutic relationship with their clinicians whereas clinicians seemed less attuned to these power dynamics.LimitationsThematic saturation was based on patient interviews. Themes presented might incompletely reflect clinicians' perspectives.ConclusionsEfforts to improve shared decision making for treatment of advanced CKD will likely need to explicitly address differences between patients and their clinicians in approaches to decision making about treatment of advanced CKD and perceived power imbalances in the therapeutic relationship.

Project description:IntroductionPatients with advanced kidney disease (AKD) have to make difficult treatment modality decisions as their disease progresses towards end-stage kidney disease. International guidelines in nephrology suggest shared decision-making (SDM) to help patients make timely treatment modality decisions that align with their values and preferences. However, systematic reviews or scoping reviews on these SDM interventions and on their reported use or outcomes are lacking. This limits the adoption of SDM in clinical practice and hampers further research and development on the subject. Our aim is to provide a comprehensive and up-to-date overview of these SDM interventions by means of a scoping review of the literature. Scoping reviews can provide a broad overview of a topic, identify gaps in the research knowledge base and report on the types of evidence that address and inform practices. This paper presents our study protocol.Methods and analysisThe proposed scoping review will be performed in accordance with the Joanna Briggs Institute's (JBI) methodology for scoping reviews. It will cover both qualitative and quantitative scientific literature, as well as the grey literature on SDM interventions for treatment modality decisions in AKD. Only literature written in English will be considered for inclusion. Two independent reviewers will participate in an iterative process of screening the literature, paper selection and data extraction. Disagreements between the reviewers will be resolved by discussion until consensus is reached or after consultation with the research team when needed. Results will be reported with descriptive statistics and diagrammatic or tabular displayed information, accompanied by narrative summaries as explained in the JBI guidelines.Ethics and disseminationEthical approval for the conduct of this study is not required. We will analyse previously collected data for the proposed scoping review. Our results will be published in a peer-reviewed journal and disseminated through conferences and/or seminars.

Project description:ObjectivePatient values and preferences are an important component to decision making when tradeoffs exist that impact quality of life, such as tradeoffs between stroke prevention and hemorrhage in patients with atrial fibrillation (AF) contemplating anticoagulant therapy. Our objective is to describe the development of an Atrial Fibrillation Guideline Support Tool (AFGuST) to assist the process of integrating patients' preferences into this decision.Materials and methodsCHA2DS2VASc and HAS-BLED were used to calculate risks for stroke and hemorrhage. We developed a Markov decision analytic model as a computational engine to integrate patient-specific risk for stroke and hemorrhage and individual patient values for relevant outcomes in decisions about anticoagulant therapy.ResultsIndividual patient preferences for health-related outcomes may have greater or lesser impact on the choice of optimal antithrombotic therapy, depending upon the balance of patient-specific risks for ischemic stroke and major bleeding. These factors have been incorporated into patient-tailored booklets which, along with an informational video, were developed through an iterative process with clinicians and patient focus groups.Key limitationsCurrent risk prediction models for hemorrhage, such as the HAS-BLED, used in the AFGuST, do not incorporate all potentially significant risk factors. Novel oral anticoagulant agents recently approved for use in the United States, Canada, and Europe have not been included in the AFGuST. Rather, warfarin has been used as a conservative proxy for all oral anticoagulant therapy.ConclusionsWe present a proof of concept that a patient-tailored decision-support tool could bridge the gap between guidelines and practice by incorporating individual patient's stroke and bleeding risks and their values for major bleeding events and stroke to facilitate a shared decision making process. If effective, the AFGuST could be used as an adjunct to published guidelines to enhance patient-centered conversations about the anticoagulation management.

Dataset Information

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

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets