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Objectives: Lack of awareness of Alzheimer's disease (AD) among Black Americans may undermine their ability to identify potential AD risk. We examined Black Americans' perceptions and knowledge of AD, and views of a healthy brain, which may contribute to the development of effective and culturally sensitive strategies to address racial disparities in AD. Methods: We conducted a mixed-methods study, integrating a cross-sectional survey of 258 older (>55 years) Black participants and qualitative interviews with a sub-sample of N = 29. Both data sets were integrated to inform the results. Results: Participants endorsed having little knowledge of AD. While most participants reported practicing a healthy lifestyle to promote a healthy brain, the range of activities listed were limited. Participants made several suggestions to increase AD awareness, which includes using AD educational materials containing information that would benefit the whole family, not only older adults. Outreach approaches that address both individual behaviors and structural factors were also encouraged. Conclusion: Our findings identify ongoing needs to improve AD awareness among traditionally under-represented groups. Innovation: The study utilized novel approaches to examine participants' perspectives of AD that included a diverse sample of research naïve participants, and integrated exploration of participants' views of AD and brain health.
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Background: For ambulatory cancer patients receiving systemic chemotherapy, adherence is low to recommended venous thromboembolism (VTE) prevention interventions. Previously, we identified implementation strategies to address barriers to adherence, including (1) conducting clinician education and training; (2) developing and distributing educational materials for clinicians; (3) adapting electronic health records to provide interactive assistance; and (4) developing and distributing educational materials for patients. The objective of this study was to develop these implementation strategies' form (i.e., how and when) and content (i.e., information conveyed) as a critical step for implementation and dissemination. Methods: To design and develop the form and content of the implementation strategies, we conducted multidisciplinary stakeholder panels with oncology clinicians, pharmacists, and hematologists. Over several panel discussions, we developed a low fidelity prototype. Participants performed preliminary usability testing, simulating patient care encounters. We also conducted interviews with three patients who provided additional feedback. Results: The form and content for each strategy, respectively, included (1) concise training with a slide deck; (2) succinct summary of evidence for the interventions and support for anticoagulation management; (3) automated VTE risk-assessment and clinical decision support, including bleeding risk assessment and anticoagulation options; and (4) patient education resources. During development, audit and feedback was identified as an additional strategy, for which we created report cards to implement. Conclusion: With stakeholder input, we successfully developed the form and content needed to put the implementation strategies into practice. The next step is to study the effect on the uptake of ambulatory VTE prevention recommendations in oncology clinics.
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PURPOSE: Telemedicine provides numerous benefits to patients, yet effective communication and symptom assessment remain a concern. The recent uptake of telemedicine provided an opportunity to use a newly developed dashboard with patient-reported outcome (PRO) information to enhance communication and shared decision making (SDM) during telemedicine appointments. The objective of this study was to identify barriers to using the dashboard during telemedicine, develop implementation strategies to address barriers, and pilot test use of this dashboard during telemedicine appointments in two practice settings to evaluate acceptability, adoption, fidelity, and effectiveness. METHODS: Patients and clinicians were interviewed to identify determinants to dashboard use in telemedicine. Implementation strategies were designed and refined through iterative feedback from stakeholders. A pilot study of dashboard use was conducted from March to September 2022. Acceptability, adoption, and fidelity were evaluated using mixed methods. SDM was evaluated using the collaboRATE measure. RESULTS: One hundred two patient encounters were evaluated. Most patients (62; 60%) had completed some PRO data at the time of their telemedicine encounter. Most (82; 80%) encounters had clinician confirmation that PRO data had been reviewed; however, collaborative review of the dashboard was documented in only 27%. Degree of SDM was high (mean collaboRATE score 3.40; SD, 0.11 [95% CI, 3.17 to 3.63] out of a maximum score of 4). Implementation strategies focused on patient engagement, education, and remote PRO completion. Clinician-facing strategies included education, practice facilitation, and small tests of change. CONCLUSION: This study demonstrated that implementation of a PRO-based dashboard into telemedicine appointments was feasible and had acceptable adoption and acceptability by patients and clinicians when several strategies were used to engage end users. Strategies targeting both patients and clinicians are needed to support routine and effective PRO integration in telemedicine.
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Telemedicina , Humanos , Projetos Piloto , Oncologia , Tomada de Decisão Compartilhada , Medidas de Resultados Relatados pelo PacienteRESUMO
Introduction: Decision aids (DAs) are helpful instruments used to support shared decision making (SDM). Patients with atrial fibrillation (AF) face complex decisions regarding stroke prevention strategies. While a few DAs have been made for AF stroke prevention, an encounter DA (EDA) and patient DA (PDA) have not been created to be used in conjunction with each other before. Design: Using iterative user-centered design, we developed 2 DAs for anticoagulation choice and stroke prevention in AF. Prototypes were created, and we elicited feedback from patients and experts via observations of encounters, usability testing, and semistructured interviews. Results: User testing was done with 33 experts (in AF and SDM) and 51 patients from 6 institutions. The EDA and PDA underwent 1 and 4 major iterations, respectively. Major differences between the DAs included AF pathophysiology and a preparation to meet with the clinician in the PDA as well as different language throughout. Content areas included personalized stroke risk, differences between anticoagulants, and risks of bleeding. Based on user feedback, developers 1) addressed feelings of isolation with AF, 2) improved navigation options, 3) modified content and flow for users new to AF and those experienced with AF, 4) updated stroke risk pictographs, and 5) added structure to the preparation for decision making in the PDA. Limitations: These DAs focus only on anticoagulation for stroke prevention and are online, which may limit participation for those less comfortable with technology. Conclusions: Designing complementary DAs for use in tandem or separately is a new method to support SDM between patients and clinicians. Extensive user testing is essential to creating high-quality tools that best meet the needs of those using them. Highlights: First-time complementary encounter and patient decision aids have been designed to work together or separately.User feedback led to greater structure and different experiences for patients naïve or experienced with anticoagulants in patient decision aids.Online tools allow for easier dissemination, use in telehealth visits, and updating as new evidence comes out.