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INTRODUCTION: There is limited research examining the biopsychosocial impact of cyclic vomiting syndrome (CVS) on patients. This study aims to assess individuals' experiences, fears, and concerns associated with CVS and the impact of CVS on their daily lives. METHODS: We employed social netnography to analyze publicly available posts related to CVS that were identified from six US online forums and Twitter. A randomly selected sub-cohort of posts per pre-defined criteria was first qualitatively analyzed using an inductive thematic approach. Then, machine learning topic modeling was applied to explore themes in an unsupervised manner for the entire corpus of posts. Afterward, findings from the qualitative and quantitative approaches were integrated to generate a thematic network. RESULTS: Based on the 39,179 collected posts, seven domain themes were identified. Overall, 41.4% of the posts were related to "biopsychosocial burden" of CVS, including physical impact, psychological impact, and social impact. In 22.3% of posts, individuals shared their experience of "interactions with the healthcare system", and 14.2% of posts were related to "perceived CVS triggers." Individuals also shared "solutions to alleviate their symptoms" and "mental health needs" in 10.2% and 8.8% of posts, respectively. Finally, 6.1% of the posts were about "seeking/sharing support" with others. DISCUSSION: This is the first social netnography study to describe the in-depth experiences of individuals living with CVS and the marked impact on their physical, mental, and social health. The study also highlights the unmet need for effective therapies, both pharmacological and non-pharmacological, to alleviate the biopsychosocial impact of CVS.
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Medo , Saúde Mental , Vômito , Humanos , Aprendizado de MáquinaRESUMO
The increasing need for mental health support and a shortage of therapists have led to the development of the eXtended-reality Artificial Intelligence Assistant (XAIA). This platform combines spatial computing, virtual reality (VR), and artificial intelligence (AI) to provide immersive mental health support. Utilizing GPT-4 for AI-driven therapy, XAIA engaged participants with mild-to-moderate anxiety or depression in biophilic VR environments. Speaking with an AI therapy avatar in VR was considered acceptable, helpful, and safe, with participants observed to engage genuinely with the program. However, some still favored human interaction and identified shortcomings with using a digital VR therapist. The study provides initial evidence of the acceptability and safety of AI psychotherapy via spatial computing, warranting further research on technical enhancements and clinical impact.
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We used conjoint analysis-a method that assesses complex decision making-to quantify patients' choices when selecting an osteoporosis therapy. While 60% of people prioritized medication efficacy when deciding among treatments, the remaining 40% highly valued factors other than efficacy, suggesting the need for personalized shared decision-making tools. INTRODUCTION: In this study, we aimed to examine patient decision-making surrounding osteoporosis medications using conjoint analysis. METHODS: We enrolled osteoporosis patients at an academic medical center to complete an online conjoint exercise which calculated each patient's relative importance score of 6 osteoporosis medication attributes (higher = greater relative importance in decision-making). We used latent class analysis to identify distinct segments of patients with similar choice patterns and then used logistic regression to determine if demographics and osteoporosis disease features were associated with latent class assignment. RESULTS: Overall, 304 participants completed the survey. The rank order of medication attributes by importance score was the following: efficacy at preventing hip fractures (accounted for 31.0% of decision making), mode of administration (17.5%); risk of serious side effects (16.6%); dose frequency (13.9%); efficacy at preventing spine fractures (12.5%); risk of non-serious side effects (8.4%). We found that 60.9% of the cohort prioritized medication efficacy as their top factor when selecting among the therapies. Being a college graduate, having stronger beliefs on the necessity of using medications for osteoporosis, and never having used osteoporosis medicines were the only factors associated with prioritizing medication efficacy for fracture prevention over the other factors in the decision-making process. CONCLUSIONS: While about 60% of patients prioritized efficacy when selecting an osteoporosis therapy, the remaining 40% valued other factors more highly. Furthermore, individual patient characteristics and clinical factors did not reliably predict patient decision making, suggesting that development and implementation of shared decision-making tools is warranted.
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Fraturas Ósseas , Osteoporose , Humanos , Preferência do Paciente , Osteoporose/tratamento farmacológico , Modelos LogísticosRESUMO
Background: Perianal fistulae can undermine physical, emotional, and social well-being in patients with Crohn's disease and are challenging to manage. Social media offers a rich opportunity to gain an in-depth understanding of the impact of perianal fistulae on patients' daily lives outside of controlled environments. In this study, we conducted social media analytics to examine patients' experiences with perianal fistulae and assessed the impact of perianal fistulae on patients' behavior and overall well-being. Methods: We used a mixed-method approach to examine 119 986 publicly available posts collected from 10 Crohn's disease forums in the United States between January 01, 2010 and January 01, 2020. Discussions related to Crohn's perianal fistulae were retrieved. We randomly selected 700 posts and qualitatively analyzed them using an inductive thematic approach. We then applied a latent Dirichlet allocation probabilistic topic model to explore themes in an unsupervised manner on the collection of 119 986 posts. Results: In the qualitative analysis, 5 major themes were identified: (1) burden of perianal fistula; (2) challenges associated with treatment; (3) online information seeking and sharing; (4) patient experiences with treatments; and (5) patients' apprehension about treatments. In the quantitative analysis, the percentages of posts related to the major themes were (1) 20%, (2) 29%, (3) 66%, and (4) 28%, while the topic model did not identify theme 5. Conclusions: Social media reveals a dynamic range of themes governing patients' perspectives and experiences with Crohn's perianal fistulae. In addition to the biopsychosocial burden, patients frequently express dissatisfaction with current treatments and often struggle to navigate among available management options.
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BACKGROUND: Patients with inflammatory bowel disease (IBD) are at increased risk of infections, bone fractures, and skin cancers. OBJECTIVE: We developed preventive health videos using a patient-centered approach and tested their impact on preventive health uptake. METHODS: Five animated videos explaining preventive health recommendations in IBD were iteratively developed with patient-centered focus groups and interviews. A randomized controlled trial was then conducted in a web-based IBD cohort to test the impact of video- versus text-based educational interventions. The primary outcome was receipt of the influenza vaccine. Secondary outcomes included intention to receive other preventive health services. RESULTS: Five animated videos were developed with patient input. A total of 1056 patients with IBD were then randomized to receive the video (n=511) or text-only (n=545) interventions; 55% (281/511) of the video group and 57% (311/545) of the text-only group had received their influenza vaccine in the prior year. Immediately after the intervention, 73% (502/683) of patients reported their intention to receive the vaccine, with no difference by the type of intervention (75%, 231/307, for the video group and 72%, 271/376, for the text-only group). The proportion of patients who actually received the influenza vaccine after the intervention also did not differ by messaging type (P=.07). The strongest predictor of both intention to receive and actual receipt of the influenza vaccine was prior influenza vaccination. Older age was also associated with a higher likelihood of the intention to receive (age 36-75 years relative to 18-35 years; P=.006) and actual receipt (age >75 years relative to 18-35 years; P=.05) of the influenza vaccine. CONCLUSIONS: The proportion of patients receiving the influenza vaccine was high in both groups, but there was no difference in receipt of or in the intention to receive preventive health recommendations by type of messaging. Notably, a portion of patients in both groups had intended to be vaccinated but did not ultimately receive the vaccine. Further evaluation of patient-education strategies is warranted to improve preventive health uptake among patients with IBD. TRIAL REGISTRATION: ClinicalTrials.gov NCT05997537; https://clinicaltrials.gov/ct2/show/NCT05997537.
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Doenças Inflamatórias Intestinais , Vacinas contra Influenza , Influenza Humana , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Vacinas contra Influenza/uso terapêutico , Influenza Humana/prevenção & controle , Vacinação , Serviços Preventivos de Saúde , InternetRESUMO
BACKGROUND: Multiple biologics are available to treat inflammatory bowel disease (IBD), which can either be administered subcutaneously or intravenously. The factors that determine patients' preferences for SC/IV administration in IBD are largely unknown. This study aims to elucidate how IBD patients trade off between medications' route of administration and other medication characteristics and to understand what drives patients' preferences. METHODS: We employed a mixed methods design using data from a prior quantitative conjoint analysis survey and a series of 22 qualitative interviews. We quantitatively assessed individual patients' preferences for subcutaneous (SC) or intravenous (IV) medications based on the part-worth utilities derived from the conjoint analysis and identified predictors for these preferences. We used a qualitative analysis to identify key themes surrounding patients' preferences in the interview data. RESULTS: Of 1,077 survey participants, 49% preferred an SC medication every 2 weeks, whereas 51% preferred an IV medication every 8 weeks. More people preferred SC at reduced administration frequencies, whereas less people preferred SC at the expense of lower efficacy or higher side-effects rates. Prior experience with SC/IV was the strongest predictor for patients' preferences. Qualitatively, we obtained in-depth insights in the perceived advantages and disadvantages of SC and IV medications and in patients' preconceived ideas. CONCLUSION: While prior SC/IV exposure was a strong predictor for SC/IV preferences, patients' preferences largely are determined by a variety of other personal factors. The themes we identified could help guide clinicians when discussing therapeutic options with their patients and support shared decision-making.
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Doenças Inflamatórias Intestinais , Preferência do Paciente , Humanos , Injeções Subcutâneas , Doenças Inflamatórias Intestinais/tratamento farmacológico , Administração Intravenosa , Inquéritos e QuestionáriosRESUMO
PURPOSE: Interstitial cystitis/bladder pain syndrome is a debilitating chronic condition that disproportionately affects women at a ratio of 5:1. We sought to capture women's experiences with interstitial cystitis/bladder pain syndrome by conducting a large-scale digital ethnographic analysis of anonymous posts on Internet forums. MATERIALS AND METHODS: Online posts were identified using condition-specific keywords and data mining extraction services. Once posts were identified, a random sample of 200 online posts was coded and analyzed by hand using qualitative methods. A Latent Dirichlet Allocation probabilistic topic model was applied to the complete dataset to substantiate the qualitative analysis and allow for further thematic discovery. RESULTS: A total of 6,842 posts written by 3,902 unique users from 224 websites were identified. There was a significant overlap between the hand coding and Latent Dirichlet Allocation themes. Our analysis yielded the following themes: online community engagement, triggers and disease etiologies, medical comorbidities, quality of life impact, patient experience with medical care, and alternative therapies and self-management strategies. Additionally, our population appeared to have a high burden of nonurological associated syndromes. We identified barriers to patient-centered care and found that online peer support was important for women. CONCLUSIONS: Our digital ethnographic analysis is a novel application of qualitative methods using online sources. Social media analytics appears to capture a broader patient population than that typically included in clinic-based qualitative studies, such as patient interviews and focus groups. Understanding patient behaviors and concerns are important to guide strategies for improving care and the overall experience with this difficult-to-treat condition.
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Cistite Intersticial , Humanos , Feminino , Cistite Intersticial/terapia , Qualidade de VidaRESUMO
BACKGROUND & AIMS: In 2021, the US Preventive Services Task Force lowered the colorectal cancer (CRC) screening age to 45 years. We used conjoint analysis, a method that assesses complex decision making, to update our understanding on people's CRC screening test preferences in the context of new guidelines. METHODS: We conducted a conjoint analysis survey among unscreened individuals ≥40 years at average risk for CRC to determine the relative importance of screening test attributes in their decision making (eg, modality, effectiveness at reducing CRC risk, bowel prep). We also performed simulations to estimate the proportion of people who would prefer each US Multi-Society Task Force (MSTF) on CRC-recommended test. The analyses were stratified among those aged 40-49 years (newly or soon-to-be eligible for screening) and ≥50 years (have been eligible). RESULTS: Overall, 1000 participants completed the conjoint analysis (40-49 years, n = 456; ≥50 years, n = 544). When considering all 5 US MSTF-recommended tests, there were differences in test preferences between age groups (P = .019), and the most preferred test was a fecal immunochemical test (FIT)-fecal DNA every 3 years: 40-49 years, 34.6%; ≥50 years, 37.3%. When considering only the US MSTF tier 1 tests, most 40- to 49- (68.9%) and ≥50-year-olds (77.4%; P = .004) preferred an annual FIT over a colonoscopy every 10 years. CONCLUSIONS: Our findings suggest that more than one-third of people may want to do a FIT-fecal DNA every 3 years for their CRC screening. When only considering US MSTF tier 1 tests, three-fourths of people may prefer an annual FIT over colonoscopy. Further research examining CRC screening test preferences among broader populations is warranted to inform and enhance screening programs.
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Neoplasias Colorretais , Preferência do Paciente , Humanos , Detecção Precoce de Câncer/métodos , Colonoscopia , DNA/análise , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/genética , Sangue Oculto , Programas de Rastreamento/métodosRESUMO
Introduction: Labor represents the most common reason for hospitalization, and most patients will use some form of pain management during their labor. While some studies have suggested that virtual reality (VR) may be an effective option for managing pain, more study is necessary to understand the patient experience of VR. The aim of this study is to characterize the effect of VR on patient perceptions of coping in labor and their descriptions of the VR experience. Methodology: A nested prospective, descriptive study within a randomized controlled trial of VR in laboring patients. We included nulliparous, term patients, having contractions at least every 5â min, a pain score on the Wong-Baker pain scale of 4-7, and who had been randomized to receive the 30â min virtual reality intervention in the trial. Subjects completed a childbirth self-efficacy inventory prior to the intervention. After the intervention, they completed a modified childbirth self-efficacy inventory related to VR and underwent a structured interview. Self-efficacy scores were compared using t-tests and qualitative, thematic analysis was performed using Dedoose. Results: Twenty-one subjects received the VR intervention. Twenty subjects completed the post-intervention survey and structured interview; one declined due to discomfort. Subjects noted a significant increase in perceived degree to which VR could improve their self-efficacy in managing pain during labor. Thematic analysis revealed that subjects described the VR experience as allowing them to connect with their breathing, feeling more relaxed, and being distracted from pain. In total, 70% believed VR reduced their pain, 60% felt it reduced their anxiety, and 100% would recommend VR availability for laboring patients. Conclusion: VR can improve patient self-efficacy for managing pain in labor. Future studies should focus on the content of the visualizations, optimized user experience and design, and effectiveness with ongoing exposure to VR content in labor.
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OBJECTIVE: This qualitative study included a sample of health care workers (HCWs) at a tertiary care center providing direct care to patients with COVID-19 to explore experiences and perceptions regarding care delivery during the COVID-19 pandemic as well as factors that helped HCWs cope with the challenges of the pandemic. Methods: Grounded theory methodology was used to conduct virtual focus groups with a semistructured interview guide May to June 2020. Results: We identified major themes related to (1) HCWs' emotions during the pandemic, (2) the perceived triggers of these feelings, (3) organizational factors that made HCWs feel more supported and appreciated, and (4) personal factors that helped HCWs cope with the pandemic. Conclusion: Results highlighted the stress and challenges associated with exposure to SARS-CoV-2. The findings can help inform interventions to support HCWs during pandemics and other crises.
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COVID-19 , Humanos , Pandemias , SARS-CoV-2 , Pesquisa Qualitativa , Pessoal de SaúdeRESUMO
BACKGROUND: Filipinos have lower colorectal cancer (CRC) screening rates and worse outcomes versus non-Hispanic Whites. As Filipinos are understudied on how they perceive CRC screening, we conducted focus groups examining their attitudes, enablers, and barriers to screening. METHODS: In August and September 2021, we recruited Filipinos aged 40-75 years to participate in an online focus group. Filipinos who received care at an academic medical center or were members of Filipino community organizations in Los Angeles, CA, were sent emails inviting them to participate. We used a semi-structured interview guide for the focus groups and audio recordings were transcribed and analyzed using an inductive coding approach. Codes were generated from the qualitative data, sorted, classified into themes and subthemes, and illustrated with verbatim quotes. RESULTS: We conducted four online focus groups with 16 Filipinos. As for enablers for CRC screening, participants mentioned the importance having a doctor's recommendation. Participants reported the following barriers: potential out-of-pocket costs (the Philippines healthcare system is largely cash-based); fatalistic beliefs; reactive approach to health; lack of awareness in the community on CRC screening. Suggested solutions for improving CRC screening uptake in the community included: providing information on screening benefits, what to expect from each test (e.g., steps involved, accuracy), and financial considerations; participation by Filipino celebrities and doctors in media campaigns. CONCLUSION: Our study highlights Filipinos' perceptions on CRC screening. These data can support investigators, health systems, public health agencies, and community organizations in developing culturally tailored, sustainable interventions to address CRC screening disparities among Filipinos.
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Neoplasias Colorretais , Detecção Precoce de Câncer , Humanos , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Colorretais/diagnóstico , Grupos Focais , Pesquisa QualitativaRESUMO
INTRODUCTION: To broadly disseminate 5 user-centered educational videos for patients with inflammatory bowel disease and their family and friends on social media. METHODS: Relevant social media users were iteratively identified based on their online behavior. For each video, 2 different accompanying texts were tested. RESULTS: We reached 4.2 million social media users of whom 320,302 watched at least 50% of the video. A short description resulted in higher view rates than posing an open-ended question. DISCUSSION: We showed the feasibility of large-scale dissemination of health-related educational videos through social media. Our findings can inform future online dissemination approaches of educational content.
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Doenças Inflamatórias Intestinais , Mídias Sociais , Humanos , Disseminação de Informação/métodos , Gravação em Vídeo/métodosRESUMO
INTRODUCTION: Although gut-directed psychotherapies are effective for irritable bowel syndrome (IBS), they are rarely prescribed, given a paucity of trained clinicians. Virtual reality (VR) offers a solution by allowing patients to self-practice these techniques in a standardized manner. METHODS: A multidisciplinary team developed IBS/VR, a program that transports users into immersive VR worlds that teach patients about the brain-gut axis, cognitive behavioral therapy, and gut-directed meditation. We tested IBS/VR in Rome IV IBS patients and used inductive analysis to evaluate perceptions and identify recommendations. RESULTS: We achieved thematic saturation after 9 interviews; 3 additional interviews revealed no emergent themes. After making 23 software changes based on patient feedback, we conducted 3 additional interviews which confirmed thematic saturation (N = 15 total). DISCUSSION: This study offers initial validation of the first VR program designed for IBS.
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Terapia Cognitivo-Comportamental , Síndrome do Intestino Irritável , Meditação , Realidade Virtual , Terapia Cognitivo-Comportamental/métodos , Humanos , Síndrome do Intestino Irritável/psicologia , Síndrome do Intestino Irritável/terapiaRESUMO
BACKGROUND: Current qualitative literature about the experiences of women dealing with urinary tract infections (UTIs) is limited to patients recruited from tertiary centers and medical clinics. However, traditional focus groups and interviews may limit what patients share. Using digital ethnography, we analyzed free-range conversations of an online community. OBJECTIVE: This study aimed to investigate and characterize the patient perspectives of women dealing with UTIs using digital ethnography. METHODS: A data-mining service was used to identify online posts. A thematic analysis was conducted on a subset of the identified posts. Additionally, a latent Dirichlet allocation (LDA) probabilistic topic modeling method was applied to review the entire data set using a semiautomatic approach. Each identified topic was generated as a discrete distribution over the words in the collection, which can be thought of as a word cloud. We also performed a thematic analysis of the word cloud topic model results. RESULTS: A total of 83,589 posts by 53,460 users from 859 websites were identified. Our hand-coding inductive analysis yielded the following 7 themes: quality-of-life impact, knowledge acquisition, support of the online community, health care utilization, risk factors and prevention, antibiotic treatment, and alternative therapies. Using the LDA topic model method, 105 themes were identified and consolidated into 9 categories. Of the LDA-derived themes, 25.7% (27/105) were related to online community support, and 22% (23/105) focused on UTI risk factors and prevention strategies. CONCLUSIONS: Our large-scale social media analysis supports the importance and reproducibility of using online data to comprehend women's UTI experience. This inductive thematic analysis highlights patient behavior, self-empowerment, and online media utilization by women to address their health concerns in a safe, anonymous way.
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Mídias Sociais , Infecções Urinárias , Apoio Comunitário , Feminino , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: We developed five educational videos through a user-centered approach for patients with inflammatory bowel diseases (IBD) and their families and friends. Here, we assessed if IBD patient activation and family and friends' abilities to understand IBD patients' thoughts, feelings, and behaviors (i.e., perspective taking) changed after watching the videos. METHODS: Through a pre-post survey, we assessed patient activation and perspective taking levels in people with a self-reported IBD diagnosis and their family and friends, respectively, before and after watching one of the videos. RESULTS: Among 767 participants with IBD, patient activation scores increased significantly after watching each video. In regression analyses, patient activation levels were less likely to increase in biologic-naïve participants after viewing the coping video. Among 232 people who knew someone with IBD, perspective taking scores increased significantly in 8/9 domains, which was more likely to occur among women. CONCLUSIONS: Educational videos developed through a user-centered approach were associated with higher self-reported IBD patient activation scores and perspective taking levels among family and friends. PRACTICE IMPLICATIONS: These videos, which are now widely disseminated on social media, serve as a model for how to create educational materials for improving patient activation and empathy in the social media era.
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Doenças Inflamatórias Intestinais , Mídias Sociais , Doença Crônica , Feminino , Amigos , Humanos , Doenças Inflamatórias Intestinais/terapia , Participação do PacienteRESUMO
Importance: Delaying critical care for treatable conditions owing to fear of contracting COVID-19 in the emergency department (ED) is associated with avoidable morbidity and mortality. Objective: To assess and quantify how people decided whether to present to the ED during the COVID-19 pandemic for care unrelated to COVID-19 using conjoint analysis, a form of trade-off analysis that examines how individuals make complex decisions. Design, Setting, and Participants: This cross-sectional survey study was conducted using a nationwide sample from June 1, 2020, during the initial peak of the COVID-19 pandemic. Included participants were adults aged 18 years or older in the US who self-reported that they had not tested positive for COVID-19. Data were analyzed from July 2020 through May 2021. Exposures: Participants completed a self-administered online survey. Main Outcomes and Measures: Using a choice-based conjoint analysis survey, the relative importance was assessed for the following attributes for individuals in deciding whether to seek ED care for symptoms consistent with myocardial infarction or appendicitis: reduction in chance of dying because of ED treatment, crowdedness of ED with other patients, and chance of contracting COVID-19 in the ED. We also performed latent class analyses using conjoint data to identify distinct segments of the respondent population with similar choice patterns. Logistic regression was then used to explore whether patient sociodemographics and political affiliations were factors associated with decision-making. Results: Among 1981 individuals invited to participate, 933 respondents (47.1%) completed the survey; participants' mean (SD) age was 40.1 (13.0) years, and 491 (52.6%) were women. In latent class analyses, 158 individuals (16.9%) with symptoms of myocardial infarction and 238 individuals (25.5%) with symptoms of appendicitis prioritized avoidance of COVID-19 exposure in the ED (ie, chance of contracting COVID-19 in the ED or crowdedness of ED with other patients) over seeking appropriate care for symptoms. Having a usual source of care was a factor associated with lower odds of prioritizing avoidance of COVID-19 exposure (myocardial infarction scenario: adjusted odds ratio, 0.49 [95% CI, 0.32-0.76]; P = .001; appendicitis scenario: adjusted odds ratio, 0.57 [95% CI, 0.40-0.82]; P = .003), but most sociodemographic factors and political affiliations were not factors associated with decision-making. Conclusions and Relevance: This study found that up to one-quarter of individuals were willing to forgo potentially life-saving ED care to avoid exposure to COVID-19. These findings suggest that health care systems and public health organizations should develop effective communications for patients and the community at large that reassure and encourage timely health care for critical needs during the ongoing COVID-19 pandemic and other scenarios.
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COVID-19 , Tomada de Decisões , Emergências/psicologia , Serviços Médicos de Emergência , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adulto , Comportamento de Escolha , Estudos Transversais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Análise de Classes Latentes , Masculino , Pessoa de Meia-Idade , Razão de Chances , Pesquisa Qualitativa , SARS-CoV-2 , Estados UnidosRESUMO
BACKGROUND: Many patients with irritable bowel syndrome (IBS) experience acute and unexpected pain episodes over and above chronic background symptoms, and there are emerging medications designed to treat such pain. We aimed to use conjoint analysis-a technique that elucidates how people make complex decisions-to examine patient preferences for emerging medicines for breakthrough IBS pain. METHODS: We conducted a cross-sectional conjoint analysis survey among patients with Rome IV IBS and recurrent episodes of acute pain to assess the relative importance of medication attributes in their decision-making. We also assessed what respondents would require of subcutaneous (SQ) therapies to consider their use. KEY RESULTS: Among 629 patients with Rome IV IBS, 606 (96.3%) reported ≥1 acute pain episodes in the past month. For the 461 participants with multiple attacks who completed the conjoint analysis, they prioritized medication efficacy (importance score 34.9%), avoidance of nausea (24.3%), and avoidance of constipation (12.2%) as most important in their decision-making. These were followed by route of administration (10.3%), avoidance of headache (9.3%), and avoidance of drowsiness (8.9%). Moreover, 431 (93.5%) participants would consider SQ therapies for their acute pain; they had varying expectations on the minimum pain decrease and onset and duration of pain relief needed for considering their use. CONCLUSIONS AND INFERENCES: The vast majority of patients with IBS experience breakthrough pain, and when selecting among therapies, they prioritize efficacy and most are willing to use a rapid-acting SQ treatment. These results support development of novel, effective medications-oral or SQ-for management of acute pain attacks.
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Dor Aguda/tratamento farmacológico , Analgésicos/uso terapêutico , Síndrome do Intestino Irritável/terapia , Manejo da Dor/métodos , Preferência do Paciente , Dor Aguda/fisiopatologia , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Síndrome do Intestino Irritável/fisiopatologia , Masculino , Pessoa de Meia-Idade , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVE: To assess women's knowledge, patient experience, and treatment decision making regarding overactive bladder (OAB) using digital ethnography. METHODS: Online posts were identified using a data mining service. Two hundred randomized posts were reviewed and coded using grounded theory. We then applied a latent Dirichlet allocation (LDA) probabilistic topic modeling process to review the entire collection of identified posts. RESULTS: A total of 2618 posts by 1867 unique users from 203 different websites were identified. Our analysis yielded six themes: the impact of OAB on quality of life, patient-physician interactions, online engagement, symptom management, patient knowledge acquisition, and alternative therapies. CONCLUSION: Overall, online communities are a source of support for women to self-manage the OAB symptom complex and help overcome treatment pathway challenges. Digital ethnography provides insight into patient knowledge and barriers to patient-centered care, which are important to improve patient outreach. Additionally, we identify similar findings to prior work, indicating the reliability of studying social media.
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Mídias Sociais , Bexiga Urinária Hiperativa , Feminino , Humanos , Assistência Centrada no Paciente , Qualidade de Vida , Reprodutibilidade dos Testes , Bexiga Urinária Hiperativa/terapiaRESUMO
BACKGROUND & AIMS: Abdominal pain is the most common gastrointestinal symptom reported in ambulatory clinics, but little is known about its prevalence and burden of illness in the general community. We conducted a population-based survey to determine the epidemiology, clinical characteristics, and healthcare-seeking behavior of persons with abdominal pain. METHODS: Using an online survey research firm, we recruited a representative sample of adults (18 years or older) with a history of abdominal pain. The survey included questions about abdominal pain severity as measured by GI PROMIS (a validated patient-reported outcome questionnaire), healthcare-seeking behaviors, and tests performed to evaluate symptoms. We used multivariable regression models to adjust for confounding. RESULTS: Overall, 24,929 individuals accessed the survey and 10,300 respondents reported experiencing abdominal pain and completed the questionnaire. Most participants (81.0%) were symptomatic in the past week, as measured by GI PROMIS. Of participants with prior pain, 61.5% sought medical care for their symptoms; non-Hispanic Blacks, Latinos, and participants with more education, insurance, a usual source of care, comorbidities, and more severe pain had increased odds for seeking care. Participants who sought care consulted with the following providers: primary care physicians (84.5%), gastroenterologists (39.2%), nurse practitioners or physician assistants (18.6%), obstetricians or gynecologists (8.3%), general surgeons (7.1%), or rheumatologists (3.2%). Moreover, 72.4% of healthcare seekers received tests to evaluate their pain: cross-sectional imaging (54.2%), colonoscopy (52.3%), upper endoscopy (40.8%), exploratory surgery (6.3%), or capsule endoscopy (5.0%). CONCLUSIONS: The burden of illness and healthcare use associated with abdominal pain is high in the United States. However, 2 of 5 individuals did not seek care for their symptoms and many of them might have undiagnosed, treatable disorders.