Dataset Information

A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing.

ABSTRACT: Background. Most people with multiple sclerosis (MS) want to be involved in medical decision making about disease-modifying therapies (DMTs), but new approaches are needed to overcome barriers to participation. Objectives. We sought to develop a shared decision-making (SDM) tool for MS DMTs, evaluate patient and provider responses to the tool, and address challenges encountered during development to guide a future trial. Methods. We created a patient-centered design process informed by image theory to develop the MS-SUPPORT SDM tool. Development included semistructured interviews and alpha and beta testing with MS patients and providers. Beta testing assessed dissemination and clinical integration strategies, decision-making processes, communication, and adherence. Patients evaluated the tool before and after a clinic visit. Results. MS-SUPPORT combines self-assessment with tailored feedback to help patients identify their treatment goals and preferences, correct misperceptions, frame decisions, and promote adherence. MS-SUPPORT generates a personal summary of their responses that patients can share with their provider to facilitate communication. Alpha testing (14 patients) identified areas needing improvement, resulting in reorganization and shortening of the tool. MS-SUPPORT was highly rated in beta testing (15 patients, 4 providers) on patient-provider communication, patient preparation, adherence, and other endpoints. Dissemination through both patient and provider networks appeared feasible. All patient testers wanted to share the summary report with their provider, but only 60% did. Limitations. Small sample size, no comparison group. Conclusions. The development process resulted in a patient-centered SDM tool for MS that may facilitate patient involvement in decision making, help providers understand their patients' preferences, and improve adherence, though further testing is needed. Beta testing in real-world conditions was critical to prepare the tool for future testing and inform the design of future studies.

SUBMITTER: Col N

PROVIDER: S-EPMC6798166 | biostudies-literature | 2019 Jul-Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing.

Col Nananda N Alvarez Enrique E Springmann Vicky V Ionete Carolina C Berrios Morales Idanis I Solomon Andrew A Kutz Christen C Griffin Carolyn C Tierman Brenda B Livingston Terrie T Patel Michelle M van Leeuwen Danny D Ngo Long L Pbert Lori L

MDM policy & practice 20190701 2

Background. Most people with multiple sclerosis (MS) want to be involved in medical decision making about disease-modifying therapies (DMTs), but new approaches are needed to overcome barriers to participation. Objectives. We sought to develop a shared decision-making (SDM) tool for MS DMTs, evaluate patient and provider responses to the tool, and address challenges encountered during development to guide a future trial. Methods. We created a patient-centered design process ...[more]

PMID: 31667351

Similar Datasets

Project description:BackgroundMultiple sclerosis (MS) is a chronic autoimmune inflammatory, demyelinating, and neurodegenerative disease affecting young adults. People with MS are highly interested in engaging in physical symptom management and decision-making but are often not actively engaged in symptom management discussions. Research examining the benefit of shared decision-making in the management of physical MS symptoms is sparse.ObjectivesThis study aimed to identify and synthesize the evidence on the use of shared decision-making in physical MS symptom management.DesignThis study is a systematic review of published evidence on the use of shared decision-making in physical MS symptom management.Data sources and methodsMEDLINE, CINAHL, EMBASE, and CENTRAL databases were searched in April 2021, June 2022, and April 2, 2023, for primary, peer-reviewed studies of shared decision-making in the management of MS physical symptoms. Citations were screened, data extracted, and study quality assessed according to Cochrane guidelines for systematic reviews, including risk of bias assessment. Statistical synthesis of the included study results was not appropriate; results were summarized in a nonstatistical manner using the vote-counting method to estimate beneficial versus harmful effects.ResultsOf 679 citations, 15 studies met the inclusion criteria. Six studies addressed shared decision-making in the management of pain, spasms, neurogenic bladder, fatigue, gait disorder, and/or balance issues, and nine studies addressed physical symptoms in general. One study was a randomized controlled trial; most studies were observational studies. All study results and study author conclusions indicated that shared decision-making is important to the effective management of physical MS symptoms. No study results suggested that shared decision-making was harmful or delayed the management of physical MS symptoms.ConclusionReported results consistently indicate that shared decision-making is important in effective MS symptomatic care. Further rigorous randomized controlled trials are warranted to investigate the effectiveness of shared decision-making associated with MS physical symptomatic care.RegistrationPROSPERO: CRD42023396270.

Project description:BackgroundChronic pain has emerged as a disease in itself, affecting a growing number of people. Effective patient-provider communication is central to good pain management because pain can only be understood from the patient's perspective. We aimed to develop a user-centered tool to improve patient-provider communication about chronic pain and assess its feasibility in real-world settings in preparation for further evaluation and distribution.MethodsTo identify and prioritize patient treatment goals for chronic pain, strategies to improve patient-provider communication about chronic pain, and facilitate implementation of the tool, we conducted nominal group technique meetings and card sorting with patients with chronic pain and experienced providers (n = 12). These findings informed the design of the PainAPP tool. Usability and beta-testing with patients (n = 38) and their providers refined the tool and assessed its feasibility, acceptability, and preliminary impact.ResultsFormative work revealed that patients felt neither respected nor trusted by their providers and focused on transforming providers' negative attitudes towards them, whereas providers focused on gathering patient information. PainAPP incorporated areas prioritized by patients and providers: assessing patient treatment goals and preferences, functional abilities and pain, and providing patients tailored education and an overall summary that patients can share with providers. Beta-testing involved 38 patients and their providers. Half of PainAPP users shared their summaries with their providers. Patients rated PainAPP highly in all areas. All users would recommend it to others with chronic pain; nearly all trusted the information and said it helped them think about my treatment goals (94%), understand my chronic pain (82%), make the most of my next doctor's visit (82%), and not want to use opioids (73%). Beta-testing revealed challenges delivering the tool and summary report to patients and providers in a timely manner and obtaining provider feedback.ConclusionsPainAPP appears feasible for use, but further adaptation and testing is needed to assess its impact on patients and providers.Trial registrationThis study was approved by the University of New England Independent Review Board for the Protection of Human Subjects in Research (012616-019) and was registered with ClinicalTrials.gov (protocol ID: NCT03425266) prior to enrollment. The trial was prospectively registered and was approved on February 7, 2018.

Project description:RationalePoor adherence to asthma controller medications results in poor treatment outcomes.ObjectivesTo compare controller medication adherence and clinical outcomes in 612 adults with poorly controlled asthma randomized to one of two different treatment decision-making models or to usual care.MethodsIn shared decision making (SDM), nonphysician clinicians and patients negotiated a treatment regimen that accommodated patient goals and preferences. In clinician decision making, treatment was prescribed without specifically eliciting patient goals/preferences. The otherwise identical intervention protocols both provided asthma education and involved two in-person and three brief phone encounters.Measurements and main resultsRefill adherence was measured using continuous medication acquisition (CMA) indices-the total days' supply acquired per year divided by 365 days. Cumulative controller medication dose was measured in beclomethasone canister equivalents. In follow-up Year 1, compared with usual care, SDM resulted in: significantly better controller adherence (CMA, 0.67 vs. 0.46; P < 0.0001) and long-acting beta-agonist adherence (CMA, 0.51 vs. 0.40; P = 0.0225); higher cumulative controller medication dose (canister equivalent, 10.9 vs. 5.2; P < 0.0001); significantly better clinical outcomes (asthma-related quality of life, health care use, rescue medication use, asthma control, and lung function). In Year 2, compared with usual care, SDM resulted in significantly lower rescue medication use, the sole clinical outcome available for that year. Compared with clinician decision making, SDM resulted in: significantly better controller adherence (CMA, 0.67 vs. 0.59; P = 0.03) and long-acting beta-agonist adherence (CMA, 0.51 vs. 0.41; P = 0.0143); higher cumulative controller dose (CMA, 10.9 vs. 9.1; P = 0.005); and quantitatively, but not significantly, better outcomes on all clinical measures.ConclusionsNegotiating patients' treatment decisions significantly improves adherence to asthma pharmacotherapy and clinical outcomes. Clinical trials registered with www.clinicaltrials.gov (NCT00217945 and NCT00149526).

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

A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing.

Publications

A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets