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1.
Dig Dis ; 41(3): 412-421, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36476714

RESUMO

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.


Assuntos
Doenças Inflamatórias Intestinais , Preferência do Paciente , Humanos , Injeções Subcutâneas , Doenças Inflamatórias Intestinais/tratamento farmacológico , Administração Intravenosa , Inquéritos e Questionários
2.
J Med Internet Res ; 25: e42921, 2023 08 23.
Artigo em Inglês | MEDLINE | ID: mdl-37610821

RESUMO

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.


Assuntos
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 , Internet
3.
Am J Gastroenterol ; 117(8): 1320-1323, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35926494

RESUMO

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.


Assuntos
Doenças Inflamatórias Intestinais , Mídias Sociais , Humanos , Disseminação de Informação/métodos , Gravação em Vídeo/métodos
4.
Am J Gastroenterol ; 117(9): 1508-1518, 2022 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-35973146

RESUMO

INTRODUCTION: To support shared decision-making (SDM) between patients and providers surrounding biologic treatments, we created IBD&me ( ibdandme.org )-a freely available, unbranded, interactive decision aid. We performed a multicenter comparative effectiveness trial comparing the impact of IBD&me on SDM vs a biologics fact sheet developed by the Crohn's & Colitis Foundation. METHODS: We enrolled patients with inflammatory bowel disease (IBD) being seen at a clinic within IBD Qorus-a multicenter adult IBD learning health system-between March 5, 2019, and May 14, 2021. Eligible patients included those with recent IBD-related symptoms who reported that they wanted to discuss biologics with their provider during their upcoming visit. Patients were randomized 1:1 using stratified block randomization and received an e-mail 1 week before their visit inviting them to review either IBD&me or a fact sheet. The primary outcome was patient perception of SDM as measured by the 9-Item SDM Questionnaire (0-100 scale; higher = better); the Student t test was used to compare outcomes between arms. RESULTS: Overall, 152 patients were randomized (biologics fact sheet 75, IBD&me 77); most patients had Crohn's disease (66.4%) and were biologic-experienced (82.9%). No differences were seen between groups regarding SDM (fact sheet 72.6 ± 25.6, IBD&me 75.0 ± 20.8; P = .57). Most patients stated they would be likely to recommend the fact sheet (79.6%) or IBD&me (84.9%; P = .48) to another patient with IBD. DISCUSSION: No differences in outcomes were seen between IBD&me and the biologics fact sheet in this comparative effectiveness study; patients reported high satisfaction with both resources. Further study, particularly among biologic naïve patients, is needed to determine the utility of interactive components to IBD decision aids.


Assuntos
Produtos Biológicos , Doença de Crohn , Doenças Inflamatórias Intestinais , Adulto , Produtos Biológicos/uso terapêutico , Doença Crônica , Doença de Crohn/terapia , Técnicas de Apoio para a Decisão , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico
5.
Dig Dis Sci ; 67(10): 4874-4885, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35476181

RESUMO

BACKGROUND: Inflammatory Bowel Diseases with its complexity and heterogeneity could benefit from the increased application of Artificial Intelligence in clinical management. AIM: To accurately predict adverse outcomes in patients with IBD using advanced computational models in a nationally representative dataset for potential use in clinical practice. METHODS: We built a training model cohort and validated our result in a separate cohort. We used LASSO and Ridge regressions, Support Vector Machines, Random Forests and Neural Networks to balance between complexity and interpretability and analyzed their relative performances and reported the strongest predictors to the respective models. The participants in our study were patients with IBD selected from The OptumLabs® Data Warehouse (OLDW), a longitudinal, real-world data asset with de-identified administrative claims and electronic health record (EHR) data. RESULTS: We included 72,178 and 69,165 patients in the training and validation set, respectively. In total, 4.1% of patients in the validation set were hospitalized, 2.9% needed IBD-related surgeries, 17% used long-term steroids and 13% of patients were initiated with biological therapy. Of the AI models we tested, the Random Forest and LASSO resulted in high accuracies (AUCs 0.70-0.92). Our artificial neural network performed similarly well in most of the models (AUCs 0.61-0.90). CONCLUSIONS: This study demonstrates feasibility of accurately predicting adverse outcomes using complex and novel AI models on large longitudinal data sets of patients with IBD. These models could be applied for risk stratification and implementation of preemptive measures to avoid adverse outcomes in a clinical setting.


Assuntos
Inteligência Artificial , Doenças Inflamatórias Intestinais , Estudos de Coortes , Registros Eletrônicos de Saúde , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Aprendizado de Máquina
6.
Am J Gastroenterol ; 116(12): 2459-2464, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-34730561

RESUMO

INTRODUCTION: A multicenter adult inflammatory bowel disease learning health system (IBD Qorus) implemented clinical care process changes for reducing unplanned emergency department visits and hospitalizations using a Breakthrough Series Collaborative approach. METHODS: Using Markov decision models, we determined the health economic impact of participating in the Collaborative from the third-party payer perspective. RESULTS: Across all 23 sites, participation in the Collaborative was associated with lower annual costs by an average of $2,528 ± $233 per patient when compared with the baseline period. DISCUSSION: Implementing clinical care process changes using a Collaborative approach was associated with overall cost savings. Future work should examine which specific interventions are most effective and whether such cost savings are sustainable.


Assuntos
Atenção à Saúde/organização & administração , Custos de Cuidados de Saúde , Hospitalização/tendências , Doenças Inflamatórias Intestinais/economia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Garantia da Qualidade dos Cuidados de Saúde/normas , Adulto , Doença Crônica , Redução de Custos , Feminino , Humanos , Incidência , Doenças Inflamatórias Intestinais/epidemiologia , Doenças Inflamatórias Intestinais/terapia , Masculino , Estados Unidos/epidemiologia
7.
Am J Gastroenterol ; 116(12): 2410-2418, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-34797226

RESUMO

INTRODUCTION: There is significant variation in processes and outcomes of care for patients with inflammatory bowel disease (IBD), suggesting opportunities to improve quality of care. We aimed to determine whether a structured quality of care program can improve IBD outcomes, including the need for unplanned health care utilization. METHODS: We used a structured approach to improve adult IBD care in 27 community-based gastroenterology practices and academic medical centers. Patient-reported outcomes (PRO) and health care utilization were collected at clinical visits. Outcomes were monitored monthly using statistical process control charts; improvement was defined by special cause (nonrandom) variation over time. Multivariable logistic regression was applied to patient-level data. Nineteen process changes were offered to improve unplanned health care utilization. Ten outcomes were assessed, including disease activity, remission status, urgent care need, recent emergency department use, hospitalizations, computed tomography scans, health confidence, corticosteroid or opioid use, and clinic phone calls. RESULTS: We collected data prospectively from 20,382 discrete IBD visits. During the 15-month project period, improvement was noted across multiple measures, including need for urgent care, hospitalization, steroid use, and opioid utilization. Adjusted multivariable modeling showed significant improvements over time across multiple outcomes including urgent care need, health confidence, emergency department utilization, hospitalization, corticosteroid use, and opioid use. Attendance at monthly coached webinars was associated with improvement. DISCUSSION: Outcomes of IBD care were improved using a structured quality improvement program that facilitates small process changes, sharing of best practices, and ongoing feedback. Spread of these interventions may facilitate broad improvement in IBD care when applied to a large population.


Assuntos
Assistência Ambulatorial/normas , Doenças Inflamatórias Intestinais/terapia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Qualidade da Assistência à Saúde , Adulto , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Tempo , Estados Unidos
8.
Qual Life Res ; 29(12): 3387-3396, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32813264

RESUMO

PURPOSE: Inflammatory bowel disease (IBD) patients experience diverse symptoms and the impact of these different symptoms varies substantially. Current disease activity measures do not account for the relative importance of the different symptoms and severity levels. In this study, we aimed to quantify the relative importance of different symptoms for IBD patients and to develop a patient preference-weighted symptom (PWS) score to assess symptom burden in IBD. METHODS: We performed a choice-based conjoint analysis (CBCA) survey with 129 IBD patients to estimate the relative importance of four common IBD symptoms: stool frequency, abdominal pain, blood in stools, and urgency. We then developed the PWS score using the preferences obtained from the CBCA, which we validated against existing measures. RESULTS: CBCA revealed that urgency was the most important symptom to patients, followed by abdominal pain and blood in stools. Urgency associated with incontinence received particularly high scores and was perceived to be more than 3 times as important as urgency without incontinence. Our results confirmed that different symptoms are not equally bothersome, and we showed that the relation between symptom-level and importance is not linear. The PWS score, which we developed using these estimates was highly correlated with existing disease activity measures. CONCLUSIONS: We quantified the relative importance of four common IBD symptoms and developed the PWS score for IBD, which takes the relative importance of different symptoms and symptom-levels into account. The PWS score can be used to obtain a patient-centered assessment of symptom burden.


Assuntos
Doenças Inflamatórias Intestinais/diagnóstico , Qualidade de Vida/psicologia , Feminino , Humanos , Doenças Inflamatórias Intestinais/fisiopatologia , Masculino , Inquéritos e Questionários
9.
Qual Life Res ; 29(9): 2403-2414, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32279196

RESUMO

PURPOSE: Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients' preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients' perspectives on different strategies to prioritize IBD-specific health outcomes. METHODS: Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data. RESULTS: Patients' thoughts could be grouped into four key themes with 2-4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician. CONCLUSION: In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.


Assuntos
Doenças Inflamatórias Intestinais/terapia , Avaliação de Resultados em Cuidados de Saúde/métodos , Preferência do Paciente/psicologia , Adulto , Feminino , Grupos Focais , Humanos , Doenças Inflamatórias Intestinais/psicologia , Masculino , Médicos , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Resultado do Tratamento
10.
BMC Health Serv Res ; 20(1): 556, 2020 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-32552803

RESUMO

BACKGROUND: Caregiver burden is the emotional, physical, practical, and/or financial burden associated with taking care of a patient with a chronic condition. Limited literature on caregiver burden in Inflammatory Bowel Diseases (IBD) has accounted for some predictors, but its effect on work productivity (absenteeism and presenteeism) is unknown. METHODS: In a prospective study, patients and their respective caregivers were surveyed from November 2015 until July 2017. Data on demographics, work productivity, quality of life, disease activity, caregiver burden and productivity were collected. The burden on caregivers was assessed and associations between caregiver productivity and caregiver burden were analyzed. Additionally, predictors for caregiver burden were identified. RESULTS: One hundred two IBD patients and their respective caregiver were included. In total, 39% of IBD caregivers experienced burden. Caregivers with burden experienced significantly more absenteeism and presenteeism (65 and 85% respectively). Furthermore, 51% of caregivers felt that they should be doing more for their care recipient and felt they could do a better job at caregiving. Predictors of burden included race/ethnicity, history of fistulas, diagnosis of ulcerative colitis, higher caregiver education, and hours spent caregiving. CONCLUSION: Caregivers with burden had significantly more productivity decrease compared to those without burden. Additionally, the majority of caregivers feel they should be providing more and better care for their recipients. The development of strategies to address caregiver's distress and perceived burden when caring for IBD patients is warranted.


Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Doenças Inflamatórias Intestinais/enfermagem , Doenças Inflamatórias Intestinais/psicologia , Absenteísmo , Adaptação Psicológica , Adulto , Idoso , Estudos Transversais , Eficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Presenteísmo , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Desempenho Profissional
11.
Telemed J E Health ; 26(7): 889-897, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31670610

RESUMO

Background:Despite advancements in treatment for inflammatory bowel disease (IBD), surgery remains inevitable for patients and IBD management is costly.Introduction:Frequent postoperative monitoring is needed for early detection of both short-term complications and long-term disease recurrence. We developed a care pathway for postoperative home monitoring of IBD patients using telehealth applications.Materials and Methods:We performed a retrospective cohort study with a matched control group to assess the efficacy of the Tight Control Surgery Scenario (TCSS), a 4-week postoperative care pathway. IBD patients aged 18 or older who underwent an IBD-related intestinal operation between October 2013 and December 2015 were eligible. Enrolled participants submitted postsurgical questionnaires and wound photos through e-mail. We measured patient satisfaction with the care pathway and assessed its impact on 30-day postoperative hospital readmission rates, emergency department (ED) visits, and gastroenterologist (GI)-related office visits.Results:Sixty-four (n) cases were enrolled in TCSS and matched to 64 historic controls. Patients who completed the additional evaluation survey expressed overall satisfaction. Readmissions, 30-day ED rates, and GI visits were numerically higher in cases compared with controls, but this difference was not statistically significant.Discussion:TCSS demonstrates the feasibility of implementing a telehealth care coordination platform for postsurgery IBD management. Patients with more complications may have sent in more photos due to greater concern for maintaining their health.Conclusions:Implementation of TCSS for easy home monitoring is feasible. While we did not see reductions in ED visits, GI follow-up visits, or readmissions, patient satisfaction was high, thus demonstrating its feasibility for telehealth applications.


Assuntos
Doenças Inflamatórias Intestinais , Telemedicina , Adolescente , Serviço Hospitalar de Emergência , Humanos , Doenças Inflamatórias Intestinais/cirurgia , Avaliação de Resultados da Assistência ao Paciente , Readmissão do Paciente , Estudos Retrospectivos
12.
BMC Health Serv Res ; 19(1): 270, 2019 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-31035992

RESUMO

BACKGROUND: Long length of stays (LOS) in emergency departments (ED) negatively affect quality of care. Ordering of inappropriate diagnostic tests contributes to long LOS and reduces quality of care. One strategy to change practice patterns is to use performance feedback dashboards for physicians. While this strategy has proven to be successful in multiple settings, the most effective ways to deliver such interventions remain unknown. Involving end-users in the process is likely important for a successful design and implementation of a performance dashboard within a specific workplace culture. This mixed methods study aimed to develop design requirements for an ED performance dashboard and to understand the role of culture and social networks in the adoption process. METHODS: We performed 13 semi-structured interviews with attending physicians in different roles within a single public ED in the U.S. to get an in-depth understanding of physicians' needs and concerns. Principles of human-centered design were used to translate these interviews into design requirements and to iteratively develop a front-end performance feedback dashboard. Pre- and post- surveys were used to evaluate the effect of the dashboard on physicians' motivation and to measure their perception of the usefulness of the dashboard. Data on the ED culture and underlying social network were collected. Outcomes were compared between physicians involved in the human-centered design process, those with exposure to the design process through the ED social network, and those with limited exposure. RESULTS: Key design requirements obtained from the interviews were ease of access, drilldown functionality, customization, and a visual data display including monthly time-trends and blinded peer-comparisons. Identified barriers included concerns about unintended consequences and the veracity of underlying data. The surveys revealed that the ED culture and social network are associated with reported usefulness of the dashboard. Additionally, physicians' motivation was differentially affected by the dashboard based on their position in the social network. CONCLUSIONS: This study demonstrates the feasibility of designing a performance feedback dashboard using a human-centered design approach in the ED setting. Additionally, we show preliminary evidence that the culture and underlying social network are of key importance for successful adoption of a dashboard.


Assuntos
Serviço Hospitalar de Emergência/organização & administração , Auditoria Médica , Corpo Clínico Hospitalar/normas , Atitude do Pessoal de Saúde , Serviço Hospitalar de Emergência/normas , Retroalimentação , Feminino , Humanos , Masculino , Projetos Piloto , Melhoria de Qualidade
13.
J Biomed Inform ; 81: 93-101, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29625187

RESUMO

OBJECTIVE: Inflammatory Bowel Disease (IBD) is an inflammatory disorder of the gastrointestinal tract that can necessitate hospitalization and the use of expensive biologics. Models predicting these interventions may improve patient quality of life and reduce expenditures. MATERIALS AND METHODS: We used insurance claims from 2011 to 2013 to predict IBD-related hospitalizations and the initiation of biologics. We derived and optimized our model from a 2011 training set of 7771 members, predicting their outcomes the following year. The best-performing model was then applied to a 2012 validation set of 7450 members to predict their outcomes in 2013. RESULTS: Our models predicted both IBD-related hospitalizations and the initiation of biologics, with average positive predictive values of 17% and 11%, respectively - each a 200% improvement over chance. Further, when we used topic modeling to identify four member subpopulations, the positive predictive value of predicting hospitalization increased to 20%. DISCUSSION: We show that our hospitalization model, in concert with a mildly-effective interventional treatment plan for members identified as high-risk, may both improve patient outcomes and reduce insurance expenditures. CONCLUSION: The success of our approach provides a roadmap for how claims data can complement traditional medical decision making with personalized, data-driven predictive medicine.


Assuntos
Produtos Biológicos/uso terapêutico , Colite Ulcerativa/terapia , Doença de Crohn/terapia , Hospitalização/estatística & dados numéricos , Revisão da Utilização de Seguros , Seguro Saúde/estatística & dados numéricos , Adulto , Algoritmos , Área Sob a Curva , Colite Ulcerativa/epidemiologia , Doença de Crohn/epidemiologia , Coleta de Dados , Bases de Dados Factuais , Tomada de Decisões , Custos de Cuidados de Saúde , Humanos , Classificação Internacional de Doenças , Modelos Teóricos , Reconhecimento Automatizado de Padrão , Valor Preditivo dos Testes , Qualidade de Vida , Análise de Regressão , Resultado do Tratamento
14.
Qual Life Res ; 26(2): 455-465, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-27582169

RESUMO

PURPOSE: Value-based healthcare is an upcoming field. The core idea is to evaluate care based on achieved outcomes divided by the costs. Unfortunately, the optimal way to evaluate outcomes is ill-defined. In this study, we aim to develop a single, preference based, outcome metric, which can be used to quantify overall health value in inflammatory bowel disease (IBD). METHODS: IBD patients filled out a choice-based conjoint (CBC) questionnaire in which patients chose preferable outcome scenarios with different levels of disease control (DC), quality of life (QoL), and productivity (Pr). A CBC analysis was performed to estimate the relative value of DC, QoL, and Pr. A patient-centered composite score was developed which was weighted based on the stated preferences. RESULTS: We included 210 IBD patients. Large differences in stated preferences were observed. Increases from low to intermediate outcome levels were valued more than increases from intermediate to high outcome levels. Overall, QoL was more important to patients than DC or Pr. Individual outcome scores were calculated based on the stated preferences. This score was significantly different from a score not weighted based on patient preferences in patients with active disease. CONCLUSIONS: We showed the feasibility of creating a single outcome metric in IBD which incorporates patients' values using a CBC. Because this metric changes significantly when weighted according to patients' values, we propose that success in healthcare should be measured accordingly.


Assuntos
Doenças Inflamatórias Intestinais/psicologia , Preferência do Paciente/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Comportamento de Escolha , Estudos Transversais , Atenção à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e Questionários
15.
Clin Gastroenterol Hepatol ; 14(12): 1742-1750.e7, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-26598228

RESUMO

BACKGROUND & AIMS: Mobile health technologies are advancing rapidly as smartphone use increases. Patients with inflammatory bowel disease (IBD) might be managed remotely through smartphone applications, but no tools are yet available. We tested the ability of an IBD monitoring tool, which can be used with mobile technologies, to assess disease activity in patients with Crohn's disease (CD) or ulcerative colitis (UC). METHODS: We performed a prospective observational study to develop and validate a mobile health index for CD and UC, which monitors IBD disease activity using patient-reported outcomes. We collected data from disease-specific questionnaires completed by 110 patients with CD and 109 with UC who visited the University of California, Los Angeles, Center for IBD from May 2013 through January 2014. Patient-reported outcomes were compared with clinical disease activity index scores to identify factors associated with disease activity. Index scores were validated in 301 patients with CD and 265 with UC who visited 3 tertiary IBD referral centers (in California or Europe) from April 2014 through March 2015. RESULTS: We assessed activity of CD based on liquid stool frequency, abdominal pain, patient well-being, and patient-assessed disease control, and activity of UC based on stool frequency, abdominal pain, rectal bleeding, and patient-assessed disease control. The indices identified clinical disease activity with area under the receiver operating characteristic curve values of 0.90 in patients with CD and 0.91 in patients with UC. They identified endoscopic activity with area under the receiver operating characteristic values of 0.63 in patients with CD and 0.82 in patients with UC. Both scoring systems responded to changes in disease activity (P < .003). The intraclass correlation coefficient for test-retest reliability was 0.94 for CD and for UC. CONCLUSIONS: We developed and validated a scoring system to monitor disease activity in patients with CD and UC that can be used with mobile technologies. The indices identified clinical disease activity with area under the receiver operating characteristic curve values of 0.9 or higher in patients with CD or UC, and endoscopic activity in patients with UC but not CD.


Assuntos
Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/patologia , Tecnologia de Sensoriamento Remoto/métodos , Índice de Gravidade de Doença , Telemedicina/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Animais , Endoscopia Gastrointestinal , Feminino , Humanos , Los Angeles , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Curva ROC , Tecnologia de Sensoriamento Remoto/instrumentação , Telemedicina/instrumentação , Centros de Atenção Terciária , Adulto Jovem
16.
Gastroenterology ; 149(4): 981-92.e11, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26055138

RESUMO

BACKGROUND & AIMS: Persistent activation of the inflammatory response contributes to the development of inflammatory bowel diseases, which increase the risk of colorectal cancer. We aimed to identify microRNAs that regulate inflammation during the development of ulcerative colitis (UC) and progression to colitis-associated colon cancer (CAC). METHODS: We performed a quantitative polymerase chain reaction analysis to measure microRNAs in 401 colon specimens from patients with UC, Crohn's disease, irritable bowel syndrome, sporadic colorectal cancer, or CAC, as well as subjects without these disorders (controls); levels were correlated with clinical features and disease activity of patients. Colitis was induced in mice by administration of dextran sodium sulfate (DSS), and carcinogenesis was induced by addition of azoxymethane; some mice also were given an inhibitor of microRNA214 (miR214). RESULTS: A high-throughput functional screen of the human microRNAome found that miR214 regulated the activity of nuclear factor-κB. Higher levels of miR214 were detected in colon tissues from patients with active UC or CAC than from patients with other disorders or controls and correlated with disease progression. Bioinformatic and genome-wide profile analyses showed that miR214 activates an inflammatory response and is amplified through a feedback loop circuit mediated by phosphatase and tensin homolog (PTEN) and PDZ and LIM domain 2 (PDLIM2). Interleukin-6 induced signal transducer and activator of transcription 3 (STAT3)-mediated transcription of miR214. A miR214 chemical inhibitor blocked this circuit and reduced the severity of DSS-induced colitis in mice, as well as the number and size of tumors that formed in mice given azoxymethane and DSS. In fresh colonic biopsy specimens from patients with active UC, the miR214 inhibitor reduced inflammation by increasing levels of PDLIM2 and PTEN. CONCLUSIONS: Interleukin-6 up-regulates STAT3-mediated transcription of miR214 in colon tissues, which reduces levels of PDLIM2 and PTEN, increases phosphorylation of AKT, and activates nuclear factor-κB. The activity of this circuit correlates with disease activity in patients with UC and progression to colorectal cancer.


Assuntos
Biomarcadores Tumorais/metabolismo , Colite Ulcerativa/prevenção & controle , Colo/metabolismo , Neoplasias do Colo/prevenção & controle , MicroRNAs/metabolismo , Terapêutica com RNAi , Proteínas Adaptadoras de Transdução de Sinal/metabolismo , Animais , Azoximetano , Biomarcadores Tumorais/genética , Estudos de Casos e Controles , Linhagem Celular , Colite Ulcerativa/induzido quimicamente , Colite Ulcerativa/genética , Colite Ulcerativa/metabolismo , Colite Ulcerativa/patologia , Colo/patologia , Neoplasias do Colo/induzido quimicamente , Neoplasias do Colo/genética , Neoplasias do Colo/metabolismo , Neoplasias do Colo/patologia , Sulfato de Dextrana , Modelos Animais de Doenças , Progressão da Doença , Regulação Neoplásica da Expressão Gênica , Humanos , Mediadores da Inflamação/metabolismo , Interleucina-6/metabolismo , Proteínas com Domínio LIM/metabolismo , Camundongos , MicroRNAs/genética , NF-kappa B/metabolismo , PTEN Fosfo-Hidrolase/metabolismo , Fosforilação , Proteínas Proto-Oncogênicas c-akt/metabolismo , Interferência de RNA , Fator de Transcrição STAT3/metabolismo , Transdução de Sinais , Transcrição Gênica , Transfecção , Células Tumorais Cultivadas
18.
Patient ; 17(3): 275-285, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38182935

RESUMO

OBJECTIVE: Early detection of Parkinson's Disease (PD) progression remains a challenge. As remote patient monitoring solutions (RMS) and artificial intelligence (AI) technologies emerge as potential aids for PD management, there's a gap in understanding how end users view these technologies. This research explores patient and neurologist perspectives on AI-assisted RMS. METHODS: Qualitative interviews and focus-groups were conducted with 27 persons with PD (PwPD) and six neurologists from Finland and Italy. The discussions covered traditional disease progression detection and the prospects of integrating AI and RMS. Sessions were recorded, transcribed, and underwent thematic analysis. RESULTS: The study involved five individual interviews (four Italian participants and one Finnish) and six focus-groups (four Finnish and two Italian) with PwPD. Additionally, six neurologists (three from each country) were interviewed. Both cohorts voiced frustration with current monitoring methods due to their limited real-time detection capabilities. However, there was enthusiasm for AI-assisted RMS, contingent upon its value addition, user-friendliness, and preservation of the doctor-patient bond. While some PwPD had privacy and trust concerns, the anticipated advantages in symptom regulation seemed to outweigh these apprehensions. DISCUSSION: The study reveals a willingness among PwPD and neurologists to integrate RMS and AI into PD management. Widespread adoption requires these technologies to provide tangible clinical benefits, remain user-friendly, and uphold trust within the physician-patient relationship. CONCLUSION: This study offers insights into the potential drivers and barriers for adopting AI-assisted RMS in PD care. Recognizing these factors is pivotal for the successful integration of these digital health tools in PD management.


Assuntos
Inteligência Artificial , Neurologistas , Doença de Parkinson , Humanos , Doença de Parkinson/psicologia , Doença de Parkinson/terapia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Neurologistas/psicologia , Finlândia , Pesquisa Qualitativa , Itália , Grupos Focais , Entrevistas como Assunto , Atitude do Pessoal de Saúde , Telemedicina/métodos , Adulto , Relações Médico-Paciente , Progressão da Doença
19.
Inflamm Bowel Dis ; 2024 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-39197162

RESUMO

BACKGROUND: Previous research suggests patients living with inflammatory bowel disease (IBD) understand IBD remission differently than healthcare professionals, which could influence patient expectations and clinical outcomes. We investigated 3 questions to better understand this: (1) How do patients currently understand remission; (2) Do patients currently face any barriers to communicating with their healthcare professional about remission; and (3) Can existing educational material be improved to help patients feel more prepared to discuss remission and treatment goals with their healthcare professional? METHODS: We sent a web-based survey to adult patients with IBD in the United States. This survey included an educational experiment where patients were randomly assigned to 1 of 3 improved versions of existing educational material. RESULTS: In total, 1495 patients with IBD completed the survey. The majority of patients (67%) agreed that remission is possible in IBD, but there was significant diversity in how they defined it with the most common being "my symptoms are reduced" (22%) and "I am no longer experiencing any symptoms" (14%). Patients reported being able to communicate openly with their healthcare professionals. Exposure to improved educational material did not have a statistically significant effect on patients' feelings of preparedness for discussing different aspects of their care with their healthcare professionals. CONCLUSIONS: Our study confirms that patients tend to define remission in terms of resolving symptoms. We found little evidence of barriers preventing patients from discussing remission with their healthcare professionals. This suggests that educational material could be used to resolve this discrepancy in understanding.


We surveyed 1495 patients with inflammatory bowel disease (IBD). We found that patients tend to define IBD remission in terms of resolving symptoms and that there is little evidence of barriers preventing patients from discussing remission with their healthcare professionals.

20.
Curr Opin Gastroenterol ; 29(4): 384-90, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23666365

RESUMO

PURPOSE OF REVIEW: Stem cell therapy has emerged as a promising therapeutic strategy for inflammatory bowel diseases (IBDs). Currently, stem cell therapy is not part of the standard of care and is usually only performed as a part of clinical trials. In this review, clinical results, proposed underlying mechanisms, and future research directions will be discussed. RECENT FINDINGS: Administration of mesenchymal stem cells (MSCs) and hematopoietic stem cells (HSCs) has been evaluated for IBD treatment over the past years. MSC therapy is being explored as a treatment option for fistulizing Crohn's disease and for luminal Crohn's disease. It is shown to be well tolerated, but results on efficacy are inconsistent. HSC transplantation seems to be very effective, but serious adverse events are common. Therefore, future research should focus on improving efficacy of MSC therapy, and on improvement of safety of HSC therapy. SUMMARY: Both MSC and HSC therapy offer clinical potential, but currently are not routinely used for IBD treatment. MSC therapy seems well tolerated but results on efficacy are conflicting. HSC transplantation is shown to be effective but safety concerns remain. Nonetheless, for severe refractory IBD cases, stem cell therapy could well become the next-generation treatment option.


Assuntos
Doenças Inflamatórias Intestinais/terapia , Transplante de Células-Tronco/métodos , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Doenças Inflamatórias Intestinais/etiologia , Doenças Inflamatórias Intestinais/imunologia , Transplante de Células-Tronco Mesenquimais/métodos , Transplante de Células-Tronco/tendências
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