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493 results for “patient‐reported outcomes”
Patient Reported Outcomes Following Interventional Procedures in Pelvic Pain
ClinicalTrials.gov study NCT05531500. IPD Sharing: NO. Countries: 0. Publications: 0.
SoftStitch™ for All-Inside Meniscal Repair: Comparative Analysis of Patient Reported Outcome Measures
ClinicalTrials.gov study NCT05491564. IPD Sharing: Not stated. Countries: 0. Publications: 0.
The Patient-Reported Outcomes in ALK Positive Advanced NSCLC in China
ClinicalTrials.gov study NCT06586801. IPD Sharing: NO. Countries: 0. Publications: 0.
Dataset related to article "Patient‐reported outcomes for typical single cheek harvesting vs atypical lingual, labial or bilateral cheeks harvesting: a single‐center analysis of more than 800 patients"
<p>This record contains data of the paper: Patient‐reported outcomes for typical single cheek harvesting vs atypical lingual, labial or bilateral cheeks harvesting: a single‐center analysis of more than 800 patients.</p> <p>Purpose The optimal harvesting site for oral grafting in patients with urethral strictures remain controversial, with no study investigating morbidity on large scale. We aimed to compare typical single cheek harvesting vs atypical lingual, labial or bilateral cheeks harvesting in terms of complications and patient-reported outcomes.<br> Methods Within 827 patients treated at our referral center with oral graft urethroplasty, we compared typical vs atypical harvesting techniques. A self-administered, semiquantitative, non-validated questionnaire assessed early (10 days) and late (4 months) postoperative complications and patient-reported outcomes. A semiquantitative score was calculated according to patient responses, and it was used to assess early (6 questions) and late (13 questions) patient dissatisfaction status. Patients were defined early and/or late dissatisfied when they scored ≥ 7 and ≥ 10 at the early or late questionnaires, respectively. Results Between 1998 and 2019, our patients predominantly received typical single cheek harvesting (89% vs 11%), with + 1.5% increase rate per year (p < 0.001). Early and late dissatisfied patients were, respectively, 170 (23%) vs 39 (44%) and 59 (8%) vs 16 (18%) in the typical vs atypical groups. Atypical harvesting was associated with higher rates of early (Odds ratio [OR]: 2.34; 95% Confidence interval [CI] 1.44–3.75; p = 0.001) and late (OR: 2.37; 95%CI 1.22–4.42; p = 0.008) postoperative dissatisfaction.</p> <p>Conclusions Typical single cheek harvesting was the preferred surgical option at our center and it was associated with negligible early and late rates of complications and patient’s dissatisfaction. Conversely, atypical lingual, labial or bilateral cheeks harvesting was associated with higher complications and frequent patient dissatisfaction.</p>
Dataset related to article "Is testis sparing surgery safe in patients with incidental small testicular lesions referring to a fertility center? A retrospective analysis reporting factors correlated to malignancy and long-term oncological outcomes "
<p>This record contains raw data related to article “Is testis sparing surgery safe in patients with incidental small testicular lesions referring to a fertility center? A retrospective analysis reporting factors correlated to malignancy and long-term oncological outcomes"</p> <p>Abstract</p> <p><strong>Purpose: </strong> To define predictors of malignancy after Testis sparing surgery (TSS) in patients referring to a fertility center with incidental small testicular lesions. Sub analyses were performed to assess predictors of Leydig cell hyperplasia and Leydig cell tumor.</p> <p><strong>Materials and methods: </strong> We performed a retrospective analysis of a single institutional database including patients treated with TSS between 2002 and 2020. All patients who underwent TSS as a first line surgical approach for incidentally detected lesions found during fertility evaluation were included.</p> <p><strong>Results: </strong> Data of 64 patients were collected. The median follow up was 58 months and no recurrences were observed. At univariable logistic regression multifocal lesions, hypervascularization, microlithiasis, age and lesion size were significantly associated with malignancy. At multivariable logistic regression lesion dimension, hypervascularization and multifocal lesions were predictors of malignancy. Lesions smaller than 5 mm proved to be benign in 96.6% of the cases (32/33). Intraoperative color of the lesion and US pattern of vascularization were predictors at multivariable logistic regression for Leydig cell hyperplasia and Leydig cell tumor.</p> <p><strong>Conclusion: </strong> Ultrasonographic characteristics and intraoperative appearance of the lesion can predict the malignant nature of small testicular lesions, guiding their surgical management in patients referring to a fertility center. Based on our experience, clinicians may safely perform TSS in carefully selected patients.</p> <p> </p>
Patient-reported Outcomes in the Treatment of Schizophrenia
ClinicalTrials.gov study NCT00230828. IPD Sharing: Not stated. Countries: 0. Publications: 0.
Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.
<p>Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs).</p> <p><strong>Objective: </strong>The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs.</p> <p><strong>Methods: </strong>A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents.</p> <p><strong>Results: </strong>A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States.</p> <p><strong>Conclusion: </strong>In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.</p> <p> </p>
Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.
<p>Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Aims: </strong>Religion and spirituality can be resources for internal strength and resilience, and may assist with managing life's challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.</p> <p><strong>Methods and results: </strong>APPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in one's life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.</p> <p><strong>Conclusion: </strong>Religiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.</p> <p><strong>Keywords:</strong>;</p>
data set from Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.
<p>Data set from the article Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries' healthcare system performance are of importance for patient-reported outcomes.</p> <p><strong>Aims: </strong>The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.</p> <p><strong>Methods: </strong>A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.</p> <p><strong>Results: </strong>Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.</p> <p><strong>Conclusion: </strong>Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.</p> <p> </p>
Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS)
<p>Dataset from Moons P, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Oechslin E, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S, Kovacs AH; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS). Am J Cardiol. 2021 Apr 15;145:135-142. doi: 10.1016/j.amjcard.2020.12.088. Epub 2021 Jan 15. PMID: 33460605.</p> <p>Abstract</p> <p>In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.</p>
Longitudinal bibliometric investigation of trending orthodontic research topics, study designs and outcomes: are we reporting patient-focused outcomes?
Open the record for dataset details and reuse information.
Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS.
<p>Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS.</p> <p>The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40-59 years and 18-39 years. Adjusted for demographic and medical characteristics, patients ≥60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40-59 years. Registration: ClinicalTrials.gov <a href="http://clinicaltrials.gov/show/NCT02150603">NCT02150603</a>.</p>
Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
<p>Lu CW, Wang JK, Yang HL, Kovacs AH, Luyckx K, Ruperti-Repilado FJ, Van De Bruaene A, Enomoto J, Sluman MA, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Oechslin E, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S, Moons P; APPROACH‐IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD) *. Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries. J Am Heart Assoc. 2022 May 3;11(9):e024993. doi: 10.1161/JAHA.121.024993. Epub 2022 Apr 26. PMID: 35470715; PMCID: PMC9238599.</p> <p>Abstract</p> <p>Background Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. Methods and Results As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: <a href="http://clinicaltrials.gov/show/NCT02150603">NCT02150603</a>.</p>
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Allen Brain Atlas
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DANDI Archive for NWB datasets
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International Brain Laboratory public data
The International Brain Laboratory public data releases expose standardized mouse decision-making experiments, including Neuropixels recordings, widefield calcium imaging, behavior, and session metadata accessed through the ONE API.
OpenNeuro
OpenNeuro is a free, open platform for sharing neuroimaging datasets, with public search, dataset pages, and download paths for web, S3, DataLad, and the OpenNeuro CLI.