Dataset Information

Integrating musculoskeletal ultrasound as a shared decision-making tool in hemophilia care: observations from a 3-year study.

ABSTRACT:

Background

Hemophilia significantly impacts joint health, necessitating innovative strategies for early detection and management of joint damage.

Objectives

This study assessed the impact of incorporating musculoskeletal ultrasound (MSKUS) into shared decision-making processes on prophylaxis regimens for patients with hemophilia over a 3-year period.

Methods

The "Joint Damage Monitoring by Ultrasonography in Patients with Hemophilia in Japan" study was a long-term prospective observational study conducted at Ogikubo Hospital, Tokyo, Japan. It enrolled 174 participants with moderate-to-severe hemophilia A or B. Participants underwent 6 monthly MSKUS evaluations, generating 3582 images from 682 joints; the findings guided adjustments of prophylaxis.

Results

Over the 3-year period, 69.3% of participants adjusted their prophylaxis regimen at least once. Adherence, defined as the ratio of the prescribed to the actual frequency of prophylaxis administration as agreed upon by physicians and patients, was high at the beginning of the study, with an average of 91.6%, and remained high after 3 years at 94.7%. The HEAD-US scores for elbows, knees, and ankles significantly improved (all P < .0001). The spontaneous annual joint bleeding rate and Hemophilia Joint Health Scores also significantly improved (P = .001 and P = .004, respectively). Synovitis detection decreased from 12.9% to 1.6%, with the majority of identified synovitis being subclinical (11.7%) and not associated with bleeding events in the 6 months preceding detection.

Conclusion

Integrating MSKUS into hemophilia care as a shared decision-making tool significantly facilitates the early detection of joint damage and supports personalized prophylaxis adjustments, markedly improving patient outcomes.

SUBMITTER: Nagao A

PROVIDER: S-EPMC11347854 | biostudies-literature | 2024 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Integrating musculoskeletal ultrasound as a shared decision-making tool in hemophilia care: observations from a 3-year study.

Nagao Azusa A Orita Satoko S Fukutake Katsuyuki K Takedani Hideyuki H

Research and practice in thrombosis and haemostasis 20240714 5

<h4>Background</h4>Hemophilia significantly impacts joint health, necessitating innovative strategies for early detection and management of joint damage.<h4>Objectives</h4>This study assessed the impact of incorporating musculoskeletal ultrasound (MSKUS) into shared decision-making processes on prophylaxis regimens for patients with hemophilia over a 3-year period.<h4>Methods</h4>The "Joint Damage Monitoring by Ultrasonography in Patients with Hemophilia in Japan" study was a long-term prospecti ...[more]

PMID: 39192870

Similar Datasets

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.

Project description:Reports exist regarding a gradual approach to the care of patients with differences of sexual development. Each patient and family have different values and styles of learning that have to be taken into account. The goals of care should include education about the condition, counseling of the patient and family, and a complete outlining of treatment options. Motivated by a call from the 2010 Health Reform Law for the use of shared decision-making tools and the emphasis placed on these issues by the DSD Consensus Statement, we sought to develop and implement such tools for the DSD population.1-3 Thus, we developed an organized checklist for providers to share with a patients and families affected by CAIS, beginning with the initial visit. The development of the document enlisted input from physicians, clinical coordinator, advocacy groups and affected individuals. It allows providers to explain the process of care and develop a plan for delivery of that care over multiple visits spanning six months or more. The checklist is divided into five sections: 1) An overview addressing how much information is desired and in what manner the patient prefers to obtain information; 2) A preferred words list so that the patient can choose nomenclature that is most comfortable; 3) A list of topics to review over the course of multiple visits; 4) A list of questions to be answered by the providers or other resources over time, and; 5) A list of concerns to be addressed before surgical intervention is considered. An organized approach to long-term delivery of compassionate care and accurate information can be facilitated for patients with CAIS by the use of a shared decision-making checklist. Documentation of the care delivery process can stimulate referral to peer support and promote fully informed consent for treatment decisions. The use of the checklist should encourage trust in the provider, as well as aid in identifying and addressing stressors for the patient and family. The checklist will be updated and revised as new treatments and advanced technology emerges.

Project description:Though individual categorization or decision processes have been studied separately in many previous investigations, few studies have investigated how they interact by using a two-stage task of first categorizing and then deciding. To address this issue, we investigated a categorization-decision task in two experiments. In both, participants were shown six faces varying in width, first asked to categorize the faces, and then decide a course of action for each face. Each experiment was designed to include three groups, and for each group, we manipulated the probabilistic contingencies between stimulus, category assignments, and decision consequences. For each group, each participant received three different sequences of category response, category feedback, decision response, and decision feedback. We found that participants were only partially responsive in the appropriate directions to the contingencies assigned to each group. Comparisons of results from different sequences provided evidence for empirical interference effects of categorization on decisions. The empirical interference effect is defined as the difference between the probability of taking a hostile action in decision-alone conditions and the total probability of taking a hostile action in categorization-decision conditions. To test competing accounts for multiple empirical results, including two-stage choice probabilities and empirical interference effects, we compared a quantum cognition model versus a two-stage exemplar categorization model at both aggregate and individual levels. Using a Bayesian information criterion, we found that the quantum model provided an overall better model fit than the exemplar model. Although both models predicted empirical interference effects, the exemplar model was able to generate probabilistic deviation by incorporating category information of the first stage into the feature representation of the subsequent decision stage, while the quantum model produced interference effect by superposition, measurement, and quantum entanglement.

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.

Dataset Information

Integrating musculoskeletal ultrasound as a shared decision-making tool in hemophilia care: observations from a 3-year study.

Background

Objectives

Methods

Results

Conclusion

Publications

Integrating musculoskeletal ultrasound as a shared decision-making tool in hemophilia care: observations from a 3-year study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets