Background: It remains unclear if there is agreement between physicians and patients on the definition of treatment success following orthopedic treatment. Clinical progress notes are generated during each health care encounter and include information on current disease symptoms, rehabilitation progress, and treatment outcomes.
Objective: This study aims to assess if physicians and patients agree on whether patient outcomes captured in clinical progress notes reflect a successful treatment outcome following orthopedic care.
Methods: We performed a cross-sectional analysis of a subset of clinical notes for patients presenting to a Level-1 Trauma Center and Regional Health System for follow-up for an acute proximal humerus fracture (PHF). This study was part of a larger study of 1000 patients with PHF receiving initial treatment between 2019 and 2021. From the full dataset of 1000 physician-labeled notes, a stratified random sample of 25 notes from each outcome label group was identified for this study. A group of 2 patients then reviewed the sample of 100 clinical notes and labeled each note as reflecting treatment success or failure. Cohen κ statistics were used to assess the degree of agreement between physicians and patients on clinical note content.
Results: The average age of the patients in the sample was 67 (SD 13) years and 82% of the notes came from female patients. Patients were primarily White (91%) and had Medicare insurance coverage (65%). The note sample came from fracture-related encounters ranging from the second to the tenth encounter after the index PHF visit. There were no significant differences in patient or visit characteristics across concordant and discordant notes labeled by physicians and patients. Among agreement levels ranging from poor to perfect agreement, physician and patient evaluators exhibited only a fair level of agreement in what they deemed as treatment success based on a Cohen κ of 0.32 (95% CI 0.10-0.55; P=.01). Furthermore, interpatient and interphysician agreement also demonstrated relatively low levels of agreement.
Conclusions: The findings suggest that physicians and patients demonstrated low levels of agreement when assessing whether a patient's clinical note reflected a successful outcome following treatment for a PHF. As low levels of agreement were also observed within physician and patient groups, it is clear the definition of success varied highly across both physicians and patients. Further research is needed to elucidate physician and patient perceptions of treatment success. As outcome measurement and demonstrating the value of orthopedic treatment remain important priorities, it is important to better define and reach a consensus on what treatment success means in orthopedic medicine.
Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.
Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population-centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it).
Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input.
Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention.
Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions.
Linguistic accommodation refers to the process of adjusting one's language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient.
Unlabelled: Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process.
Background: In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania.
Objective: The primary aim of this study is to examine the range of methods used to self-induce mania or hypomania described by users of online forums with self-reported BD. Second, we summarize the motivations of users to engage in these behaviors.
Methods: We conducted an observational study of online forum posts that discussed self-induction of mania or hypomania, either in the posters themselves or observed firsthand in others. Posts were identified using Google advanced search operators, then extracted and coded for content in NVivo (version 12 for Mac; QSR International). A total of 44 online forum threads were identified discussing self-induced mania (n=25) or hypomania (n=19). These forums contained 585 posts by 405 usernames, of which 126 usernames discussed methods for self-induction across 327 posts (number of methods per username: median 2, IQR 1-4; range 1-11).
Results: In total, 36 methods were grouped by the authors. The most frequently reported were sleep reduction (n=50), caffeine (n=37), and cessation of medication (n=27). Twenty-six usernames reported their motivation to self-induce mania or hypomania; almost three-quarters (n=19) reported a desire to end a depressive episode. Almost a third of usernames (118/405) explicitly discouraged other forum users from self-inducing mania or hypomania.
Conclusions: Online forums provide an additional and valuable source of information about triggers for mania that may inform relapse prevention in BD. The online forum conversations investigated were generally responsible and included cautionary advice not to pursue these methods.
Background: Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated.
Objective: This study aims to (1) assess the quality of an ODD held in Quebec and Ontario, Canada, on the topic of COVID-19 triage protocols for access to critical care in an extreme pandemic context and (2) determine its transformative aspect according to the perceptions of participants.
Methods: We conducted a simultaneous ODD in Quebec and Ontario on May 28 and June 4, 2022, with a diversified target audience not working in the health care system. We used a thematic analysis for the transcripts of the deliberation and the written comments of the participants related to the quality of the process. Participants responded to a postdeliberation questionnaire to assess the quality of the ODD and identify changes in their perspectives on COVID-19 pandemic triage protocols after the deliberation exercise. Descriptive statistics were used. An index was calculated to determine equality of participation.
Results: The ODD involved 47 diverse participants from the public (n=20, 43% from Quebec and n=27, 57% from Ontario). Five themes emerged: (1) process appreciation, (2) learning experience, (3) reflecting on the common good, (4) technological aspects, and (5) transformative aspects. A total of 46 participants responded to the questionnaire. Participants considered the quality of the ODD satisfactory in terms of process, information shared, reasoning, and videoconferencing. A total of 4 (80%) of 5 participants reported at least 1 change of perspective on some of the criteria and values discussed. Most participants reported that the online modality was accessible and user-friendly. We found low polarization when calculating equal participation. Improvements identified were measures to replace participants when unable to connect and optimization of time during discussions.
Conclusions: Overall, the participants perceived the quality of ODD as satisfactory. Some participants self-reported a change of opinion after deliberation. The online modality may be an acceptable alternative for democratic deliberation but with some organizational adaptations.
Background: The patient-provider relationship in obstetrics and gynecology (OBGYN) is uniquely complex due to the sensitive nature of examinations and topics. Patients often prefer health care providers who share similar racial, ethnic, gender, or linguistic backgrounds, particularly in sensitive health care situations, to improve communication and comfort, though historically, specific gender preferences for OBGYNs have not been evident.
Objective: This study aims to describe the values, qualities, and preferences of patients in their relationships with OBGYN providers.
Methods: This cross-sectional survey, conducted from October 2019 to December 2019, involved 1039 US OBGYN patients and used a mixed methods approach, integrating quantitative responses and qualitative insights from open-ended questions. Recruitment was facilitated through targeted social media campaigns, and the survey aimed to capture detailed patient preferences and barriers to care by assessing responses on provider traits, patient experiences, and demographic factors. The study's rigorous data collection and analysis were designed to fill gaps identified in previous research on patient-provider relationships in OBGYN care.
Results: The findings underscore the paramount importance of trust and comfort, with listening skills identified as crucial. A notable finding is the marked preference for same-gender providers, observed in 80.7% (545/675) of participants. Primary barriers to seeking care reported included daily commitments, highlighting the need for accessible and flexible care options.
Conclusions: The study highlights a significant shift from previous scientific findings in patient preferences toward gender concordance and trust in OBGYN settings, diverging from previous research. These results emphasize the need for patient-centered care and tailored communication strategies to enhance patient experiences and outcomes. Future research should focus on diverse populations to broaden the findings' applicability and explore the impact of recent shifts in health care policies.
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