Project description:Poor adherence to asthma controller medications results in poor treatment outcomes.To 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.In 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.Refill 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.Negotiating patients' treatment decisions significantly improves adherence to asthma pharmacotherapy and clinical outcomes. Clinical trials registered with www.clinicaltrials.gov (NCT00217945 and NCT00149526).
Project description:AimTo evaluate the preliminary effectiveness of the BRief Evaluation of Asthma THerapy intervention, a 7-min primary care provider-delivered shared decision-making protocol that uses motivational interviewing to address erroneous asthma disease and medication beliefs.DesignA multi-centre masked two-arm group-randomized clinical trial.MethodsThis 2-year pilot study is funded (September 2016) by the National Institute of Nursing Research. Eight providers will be randomized to one of two arms: the active intervention (N = 4) or a dose-matched attention control (N = 4). Providers will deliver the intervention to which they were randomized to 10 Black adult patients with uncontrolled asthma (N = 80). Patients will be followed three months postintervention to test the preliminary intervention effects on asthma control (primary outcome) and on medication adherence, lung function, and asthma-related quality of life (secondary outcomes).DiscussionThis study will evaluate the preliminary impact of a novel shared decision-making intervention delivered in a real world setting to address erroneous disease and medication beliefs as a means of improving asthma control in Black adults. Results will inform a future, large-scale randomized trial with sufficient power to test the intervention's effectiveness.ImpactShared decision-making is an evidence-based intervention with proven effectiveness when implemented in the context of labour- and time-intensive research protocols. Medication adherence is linked with the marked disparities evident in poor and minority adults with asthma. Addressing this requires a novel multifactorial approach as we have proposed. To ensure sustainability, shared decision-making interventions must be adapted to and integrated into real-world settings.Trial registrationRegistered at clincialtrials.gov as NCT03036267 and NCT03300752.
Project description:Shared decision making (SDM) aims to involve patients in the decisions about their care, considering their preferences, values and concerns about the different treatment options. However, research shows that people with mental health problems have considerable unmet information needs about their condition. This community-based cross-sectional study explores the SDM process and information needs among people with Generalized Anxiety Disorder (GAD), as an initial step in the design and development of a Patient Decision Aid for this population. Seventy participants completed an online survey with the Control Preference Scale, and questions about the perceived difficulty of past treatment decisions and the use of the Internet for searching for GAD-related information. Most participants preferred an active (42.9%) or collaborative role (41.4%) in the SDM process, and 53% did not perceive their preferred role. Information provided by healthcare professionals was considered insufficient by 28% of the sample, and over 30% reported using the Internet to look for GAD-related information at least once a week or more. The most relevant GAD-related information needs were general information (71.4%), information on self-help groups (65.7%), recommendations on how to face this disorder (61.4%) and information on treatment options (50%). Exploratory analyses showed that patients who perceived an active participation were more likely to search for information frequently (p = 0.038), and those who felt more involved than desired tended to search for more themes (p = 0.049). In summary, the study showed that a considerable percentage of GAD patients have unmet needs related to decision-making participation and information.
Project description:Background:Practice facilitation is a method of introducing and sustaining organizational change. It involves the use of skilled healthcare professionals called practice facilitators (PFs) to help address the challenges associated with implementing evidence-based guidelines and complex interventions into practice. PFs provide a framework for translating research into practice by building relationships, improving communication, fostering change, and sharing resources. Nurses are well positioned to serve as PFs for the implementation of complex interventions, however, there is little evidence currently available to describe nurses in this role. Additionally, the best strategies to implement complex interventions into practices are still not fully understood. Combining practice facilitation with the train-the-trainer model has the potential to spread knowledge and skills. Shared decision making (SDM), which involves patients and providers jointly engaging in decisions around treatment options, has been shown to improve outcomes for patients with asthma. The goal of this manuscript is to describe and evaluate the practice facilitation process from the ADAPT-NC Study which successfully utilized research nurses to implement a complex asthma SDM toolkit intervention into primary care practices. Methods:As part of a larger study, 10 primary care practices were recruited for a facilitator-led dissemination intervention involving a 12-week rollout of an asthma SDM toolkit (trial registration: 1.28.2014, #NCT02047929). An experienced lead PF trained research nurses as PFs from each of the 4 participating practice-based research networks (PBRNs) in a train-the-trainer model utilizing a one-day training event and subsequent remote meetings. Evaluation of PF engagement was measured through process improvement surveys. Results:Overall, the asthma SDM intervention was successfully implemented within the 4 PBRNs. All 10 facilitator-led practices remained engaged with their PFs, with 8 out of the 10 practices able to incorporate and sustain SDM visits or clinics. Responses from the surveys for process improvement yielded improved PF communication and team dynamics over time. Conclusions:This study demonstrated effective use of research nurses as practice facilitators during the dissemination of an asthma SDM intervention into primary care practices, adding to the knowledge of best practices by describing a model of large-scale implementation of a complex intervention through practice facilitation with nurses. Trial registration:"Comparing Traditional and Participatory Dissemination of a Shared Decision Making Intervention" was retrospectively registered at https://clinicaltrials.gov/ on January 28th, 2014 (NCT02047929).
Project description:Background and objectiveInhaled corticosteroids (ICS) reduce asthma-related morbidity and mortality. However, ICS non-adherence is more common in African American (AA) adults than White adults and explains, in part, the marked asthma disparities that AAs experience. We aimed to understand how ICS non-adherence could be addressed from the perspective of AA adults with asthma, their family, and friends.MethodsWe held six focus groups at two urban federally qualified health centers separately with adult asthma patients (n?=?2), patients' family/friends (n?=?2), and patients and family/friends together (n?=?2). Qualitative descriptive methodology guided the design and the conduct of focus groups. Verbatim transcripts were analyzed by three coders working independently using conventional content analysis to capture responses to interview questions and identify emergent categories.ResultsForty-six AA adults participated (32 patients, 14 family/friends); 67% were female. Participants stated that ICS adherence could be improved if they were heard, respected, and received patient-centered care, and if providers highlighted the risk of ICS non-adherence at clinic visits. Though not explicitly described by participants as shared decision-making (SDM), what they described included many essential elements of SDM.ConclusionsParticipants desired SDM and offered reasons for ICS non-adherence that could be used to inform an SDM intervention for clinical application. Strategies informed by the recipients of care and delivered by providers during routine office visits offer a scalable approach to narrowing asthma disparities experienced by AA adults.Trial registrationClinicalTrials.gov identifier NCT03036267.
Project description:Introduction: While the majority of young people who meet the criteria for being considered at increased risk of psychosis do not go on to develop a psychotic disorder, young people are currently being identified and treated in early intervention services. Ethical concerns have been raised concerning the decision about whether or not to provide treatment, and if so, what type of treatment. This study sought to support young people themselves to make these decisions with support from their clinician through a shared decision-making approach, facilitated by an online decision aid. Methods: This project used the International Patient Decision Aid Standards (IPDAS) to guide the development and piloting of an online decision aid across two phases: (1) qualitative, semi-structured focus groups with young people who were past clients and clinicians from an early psychosis service; and (2) pilot testing of the decision aid with clinicians and young people who were current clients to finalize the development. Results: Issues discussed by clinicians in the focus group were grouped into three main areas: (1) engagement phase; (2) assessment and priorities for treatment; and (3) initial and ongoing decision making. Clients focused on the context in which the decisions were made, including as they experienced initial feelings of resistance, and then acceptance of efforts made to describe and treat their mental health challenges. Clients highlighted the need for collaboration between themselves and their clinician, and the need to be equipped with the knowledge and tools to take care of themselves. These focus group data were used to refine the online decision aid. Pilot testing revealed that while it was overall useful and relevant, important limitations were noted by both clients and clinicians. Discussion: The use of a decision aid to facilitate shared decision making (SDM) in this area is feasible and has utility for both clients and clinicians. Use of such a tool can help to address the need to uphold the rights of young people as decision makers about their own care. Future efforts should embed decision aids within complex SDM interventions, and research to understand issues relating to implementation of these interventions.
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:ObjectiveThe objective of this study is to determine the factors influencing pancreatic surgery patients' perceptions of the shared decision-making process (SDM).BackgroundDecision-making in pancreatic surgery is complicated by the risk of morbidity and mortality and risk of early recurrence of disease. Improvement in SDM has the potential to improve the receipt of goal- and value-concordant care.MethodsThis cross-sectional survey included patients who underwent pancreatic surgery. The following components were studied in relation to SDM: modified satisfaction with decision scale (SWD), modified decisional regret scale (DRS), quality of physician and patient interaction, and the impact of quality of life (FACT-Hep). Correlations were computed using Pearson's correlation score and a regression model.ResultsThe survey completion rate was 72.2% (of 40/55) and the majority (72.5%) of patients underwent pancreaticoduodenectomy. There were significant positive relationships between the SDM measure and (DRS, SWD; r = 0.70, P < 0.001) and responses to questions regarding how well the patient's actual recovery matched their expectations before treatment (r = 0.62, P < 0.001). The quality of the physician-patient relationship correlated with how well recovery matched expectations (r = 0.53, P = 0.002). SDM measure scores were significant predictors of the decision evaluation measure (R2(adj) = 0.48, P < 0.001), FACT-Hep (R2(adj) = 0.15, P < 0.001), and recovery expectations measure (R2(adj) = 0.37, P < 0.001).ConclusionsImproved SDM in pancreatic surgery is associated with more realistic recovery expectations, decreased decisional regret, and improved quality of life.
Project description:Electronic health record (EHR)-linked patient portals are a promising approach to facilitate shared decision-making between families of children with chronic conditions and pediatricians. This study evaluated the feasibility, acceptability, and impact of MyAsthma, an EHR-linked patient portal supporting shared decision-making for pediatric asthma.We conducted a 6-month randomized controlled trial of MyAsthma at 3 primary care practices. Families were randomized to MyAsthma, which tracks families' asthma treatment concerns and goals, children's asthma symptoms, medication side effects and adherence, and provides decision support, or to standard care. Outcomes included the feasibility and acceptability of MyAsthma for families, child health care utilization and asthma control, and the number of days of missed school (child) and work (parent). Descriptive statistics and longitudinal regression models assessed differences in outcomes between study arms.We enrolled 60 families, 30 in each study arm (mean age 8.3 years); 57% of parents in the intervention group used MyAsthma during at least 5 of the 6 study months. Parents of children with moderate to severe persistent asthma used the portal more than others; 92% were satisfied with MyAsthma. Parents reported that use improved their communication with the office, ability to manage asthma, and awareness of the importance of ongoing attention to treatment. Parents in the intervention group reported that children had a lower frequency of asthma flares and intervention parents missed fewer days of work due to asthma.Use of an EHR-linked asthma portal was feasible and acceptable to families and improved clinically meaningful outcomes.
Project description:Background. Accurate diagnosis of patients' preferences is central to shared decision making. Missing from clinical practice is an approach that links pretreatment preferences and patient-reported outcomes. Objective. We propose a Bayesian collaborative filtering (CF) algorithm that combines pretreatment preferences and patient-reported outcomes to provide treatment recommendations. Design. We present the methodological details of a Bayesian CF algorithm designed to accomplish 3 tasks: 1) eliciting patient preferences using conjoint analysis surveys, 2) clustering patients into preference phenotypes, and 3) making treatment recommendations based on the posttreatment satisfaction of like-minded patients. We conduct a series of simulation studies to test the algorithm and to compare it to a 2-stage approach. Results. The Bayesian CF algorithm and 2-stage approaches performed similarly when there was extensive overlap between preference phenotypes. When the treatment was moderately associated with satisfaction, both methods made accurate recommendations. The kappa estimates measuring agreement between the true and predicted recommendations were 0.70 (95% confidence interval = 0.052-0.88) and 0.73 (0.56-0.90) under the Bayesian CF and 2-stage approaches, respectively. The 2-stage approach failed to converge in settings in which clusters were well separated, whereas the Bayesian CF algorithm produced acceptable results, with kappas of 0.73 (0.56-0.90) and 0.83 (0.69-0.97) for scenarios with moderate and large treatment effects, respectively. Limitations. Our approach assumes that the patient population is composed of distinct preference phenotypes, there is association between treatment and outcomes, and treatment effects vary across phenotypes. Findings are also limited to simulated data. Conclusion. The Bayesian CF algorithm is feasible, provides accurate cluster treatment recommendations, and outperforms 2-stage estimation when clusters are well separated. As such, the approach serves as a roadmap for incorporating predictive analytics into shared decision making.