Dataset Information

Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis.

ABSTRACT: Objective: Patients with cystic fibrosis (CF) undertake time-consuming programs of home therapies. Our objective was to develop a tool to help CF patients prioritize personal goals for some of these treatments. We describe the development and results of initial evaluation of this shared decision-making tool. Methods: Multicriteria decision-making method to develop a shared decision-making tool that integrates patient's values and perceptions of treatment impact on functionality/sense of well-being. Treatment efficacy data obtained through comprehensive review of English language literature and Cochrane reviews. Field study of 21 patients was performed to assess acceptability of the approach, understandability of the tool, and to determine whether there was sufficient patient-to-patient variability in treatment goals and patient preferences to make use of a personalized tool worthwhile. Results: Patients found the tool easy to understand and felt engaged as active participants in their care. The tool was responsive to variations in patient preferences. Priority scores were calculated (0-1.0 ± SD). Patients' most important treatment goals for improving lung health included improving breathing function (0.27 ± 0.11), improving functionality/sense of well-being (0.24 ± 0.13), preventing lung infection (0.21 ± 0.08), minimizing time to complete treatments (0.16 ± 0.12), and minimizing cost (0.11 ± 0.09). Conclusions: A shared decision-making tool that integrates patients' values and best evidence is feasible and could result in improved patient engagement in their own care.

SUBMITTER: Eckman MH

PROVIDER: S-EPMC6136161 | biostudies-literature | 2017 Jan-Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis.

Eckman Mark H MH Kopras Elizabeth J EJ Montag-Leifling Karen K Kirby Lari P LP Burns Lisa L Indihar Veronica M VM Joseph Patricia M PM

MDM policy & practice 20170101 1

<b>Objective:</b> Patients with cystic fibrosis (CF) undertake time-consuming programs of home therapies. Our objective was to develop a tool to help CF patients prioritize personal goals for some of these treatments. We describe the development and results of initial evaluation of this shared decision-making tool. <b>Methods:</b> Multicriteria decision-making method to develop a shared decision-making tool that integrates patient's values and perceptions of treatment impact on functionality/sen ...[more]

PMID: 30288426

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:The aims of this study were to investigate the role of the veterinarian characteristics (e.g., age, gender, self-estimation, use of the internet), and their attitudes concerning animal owners seeking self-information. A particular focus was laid on any association between shared decision making (SDM), age and gender. In an online survey, 527 German veterinarians were asked about their attitude regarding SDM principles and their experiences with self-informed animal owners. The factors associated with veterinarians' perception of SDM were investigated in a multivariable linear regression model. A recently published structural equation model consolidated the application of SDM, empathic behavior, and veterinarians' evaluation of self-education as latent factors. Interconnected questionnaire items were processed using an exploratory factor analysis to 11 interpretable factors. Veterinarians who assumed therapy failure was associated with themselves had significantly higher rates of SDM (p = 0.002). In contrast, SDM was significantly lower (p = 0.002) if they assumed that therapy failure was due to the animal's owners. SDM was negatively associated with the perceived quality of the pet owners' self-information (p < 0.001) and if skepticism was perceived as the reason for seeking the self-information (p = 0.001). Veterinarians who advised against self-information (p = 0.006) and those who assumed that self-information of animal owners goes along with uncertainty (p = 0.001) had low SDM values (p = 0.006). Asking the animal owner for self-information (p = 0.001), and recommendations of good information sources (p = 0.022) were positively associated with SDM. Looking at the influence of age and gender on the application of SDM, older people and males rated higher. However, the evaluation of the latent factor SDM was based on the self-estimation of the participants. Assuming that younger women were less self-confident, we cannot exclude that young female participants self-evaluated their SDM skills lower than older male participants, although both groups would objectively have the same SDM level. Practitioners who have a positive attitude toward animal owners, who enjoy contact with animal owners and welcome their interest in further (self-)information, show empathic behavior, and have a positive attitude toward SDM are more likely to have better veterinarian-animal owner-relationships.

Dataset Information

Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis.

Publications

Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets