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Implementation of a “People-Like-Me” Tool for Personalized Rehabilitation After Total Knee Arthroplasty: A Mixed Methods Pilot Study
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-23 DOI: 10.1111/jep.70028
Jeremy Graber, Lauren A. Hinrichs-Kinney, Laura Churchill, Daniel D. Matlock, Andrew Kittelson, Adam Lutz, Michael Bade, Jennifer Stevens-Lapsley
{"title":"Implementation of a “People-Like-Me” Tool for Personalized Rehabilitation After Total Knee Arthroplasty: A Mixed Methods Pilot Study","authors":"Jeremy Graber,&nbsp;Lauren A. Hinrichs-Kinney,&nbsp;Laura Churchill,&nbsp;Daniel D. Matlock,&nbsp;Andrew Kittelson,&nbsp;Adam Lutz,&nbsp;Michael Bade,&nbsp;Jennifer Stevens-Lapsley","doi":"10.1111/jep.70028","DOIUrl":"https://doi.org/10.1111/jep.70028","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Rationale</h3>\u0000 \u0000 <p>While there are numerous tools available to inform if and when to use total knee arthroplasty (TKA), very few tools exist to help guide the recovery period after surgery.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims and objectives</h3>\u0000 \u0000 <p>We piloted a decision support tool that promotes a “people-like-me” (PLM) approach to rehabilitation after total knee arthroplasty (TKA). The PLM approach encourages person-centered care by “using historical outcomes data from similar (past) patients as a template of what to expect for a new patient”. In this study, we evaluated how successfully the PLM tool was implemented and examined contextual factors that may have influenced its implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Two outpatient physical therapy clinics (Clinics A and B) piloted the PLM tool from September 2020 – December 2022. We gathered data related to its implementation from multiple sources including the electronic health record (EHR), the tool itself, and surveys and interviews with patients and clinicians. We used an explanatory sequential mixed methods design to analyze the data overall and separately by each clinic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Overall, the clinics met most pre-specified implementation targets, but did not use the tool as frequently as intended. Both clinics identified time, technology, and scheduling barriers to using the tool, but Clinic A scored higher in nearly every implementation outcome. Clinic A's success may have been related to its clinicians' higher level of experience, more positive attitudes towards the tool, and more active approach to implementation compared to Clinic B.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The clinics met most of our implementation targets, but Clinic A experienced more success than Clinic B. Future efforts to implement this PLM tool should (1) engage clinicians as active participants in the implementation process, (2) explore whether incorporating treatment recommendations into the PLM tool and/or using alternative training strategies can enhance its ability to alter clinician behavior, (3) integrate the tool within the EHR to complement existing workflows and mitigate implementation barriers, and (4) include randomized controlled trials that evaluate the tool's effectiveness and scalability across diverse clinical settings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143475425","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Development of an Audit Tool to Evaluate End of Life Care in the Emergency Department: A Face and Content Validity Study
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-19 DOI: 10.1111/jep.70041
Melissa Heufel, Sarah Kourouche, Rebecca Mitchell, Magnolia Cardona, Benjamin Thomas, Wing-Shan Angela Lo, Marghie Murgo, Debbie Vergan, Kate Curtis
{"title":"Development of an Audit Tool to Evaluate End of Life Care in the Emergency Department: A Face and Content Validity Study","authors":"Melissa Heufel,&nbsp;Sarah Kourouche,&nbsp;Rebecca Mitchell,&nbsp;Magnolia Cardona,&nbsp;Benjamin Thomas,&nbsp;Wing-Shan Angela Lo,&nbsp;Marghie Murgo,&nbsp;Debbie Vergan,&nbsp;Kate Curtis","doi":"10.1111/jep.70041","DOIUrl":"https://doi.org/10.1111/jep.70041","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Emergency Departments (ED) are increasingly caring for patients with acute, chronic and terminal conditions requiring End of Life Care (EOLC). There is no published and validated tool available to evaluate EOLC delivery of patients dying in the ED. This study describes the face and content validity testing process to develop, refine and test a new and unique audit tool to evaluate EOLC in the ED.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The face and content validation process used a three-round modified-Delphi technique. We consulted 11 experts to assess the proposed 89 items. Face validity explored the overall question of appropriateness and relevance; and content validity examined relevance ratings using the Content Validity Index (CVI) 4-point Likert scale in two rounds. Iterative assessment of ratings led to inclusion (CVI &gt; 0.78), revision (CVI 0.65 to &lt; 0.78) or exclusion (CVI &lt; 0.65) of items from the tool.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of the initial 89 items, 66 were included (CVI &gt; 0.78), 16 items revised (scores 0.65 to &lt; 0.78), seven were removed (scores &lt; 0.65) and two new items suggested. Items covered the constructs patient characteristics, circumstances of death, ED performance, communication and care planning, recognition of dying, care delivery, and needs of families and carers. Scale CVI achieved 0.90. The consolidated list of 81 items achieved acceptable face validity and excellent content validity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Face and content validity of the ED EOLC audit tool achieved acceptable item-CVI scores and an excellent scale-CVI score. We recommend external validation of its components in real-life settings to monitor and set locally relevant clinical practice benchmarks.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jep.70041","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446960","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Effects of Civil War on Young Women in Somalia: Exploring the Relationships Between Death Anxiety, Meaning in Life and Self-Esteem
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-19 DOI: 10.1111/jep.70035
Ayşe Çuvadar, Handan Özcan
{"title":"Effects of Civil War on Young Women in Somalia: Exploring the Relationships Between Death Anxiety, Meaning in Life and Self-Esteem","authors":"Ayşe Çuvadar,&nbsp;Handan Özcan","doi":"10.1111/jep.70035","DOIUrl":"https://doi.org/10.1111/jep.70035","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Wars have had many negative effects on societies, particularly on women, for centuries. Therefore, this study aimed to determine the relationship between fear of death, meaning of life and self-esteem among young women living in Somalia, where the civil war has continued for many years.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study sample consists of 120 female students studying in Mogadishu, Somalia. Data were collected using the ‘Personal Information Form’, ‘Meaning in Life Questionnaire’, ‘Thorson-Powell Fear of Death Scale’ and ‘Rosenberg Self-Esteem Scale’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>It was determined that women had a moderate level of fear of death, a low level of self-esteem and a moderate level of life satisfaction. However, the score on the ‘search for meaning’ dimension was slightly lower. The majority of women reported that war had negative effects on women, affecting their pregnancy, childbirth and access to healthcare. They also stated that it affected women's participation in the workforce and social life and that they were subjected to physical, emotional and sexual violence. These findings may pave the way for the development of targeted psychosocial intervention strategies to support the mental health of women living in conflict zones. One particularly noteworthy result is that women experiencing future anxiety tend to have more positive scores in terms of the meaning of life and self-esteem. This result makes an important contribution towards understanding the complex dynamics that affect women's psychological health by emphasizing the novelty of the positive relationship between future anxiety and self-esteem.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The results suggest that the stress, anxiety and traumatic experiences women endure can have significant effects on psychological factors such as the meaning of life, fear of death and self-esteem. As a remarkable result, women experiencing future anxiety tend to have more positive scores in terms of the meaning of life and self-esteem. This result may reflect the complexity of the effects of war. It also suggests that future anxiety can shape individuals' coping mechanisms.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jep.70035","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Awareness of Financial Conflicts of Interest in Selecting Clinical Practice Guidelines Among Nepalese Oncologists: A Cross-Sectional Study
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-19 DOI: 10.1111/jep.70034
Rajeev Shrestha, Akihiko Ozaki, Hiroaki Saito, Masaharu Tsubokura, Tetsuya Tanimoto, Bikal Ghimire, Yogendra Prasad Singh, Simit Sapkota, Sunil Shrestha
{"title":"Awareness of Financial Conflicts of Interest in Selecting Clinical Practice Guidelines Among Nepalese Oncologists: A Cross-Sectional Study","authors":"Rajeev Shrestha,&nbsp;Akihiko Ozaki,&nbsp;Hiroaki Saito,&nbsp;Masaharu Tsubokura,&nbsp;Tetsuya Tanimoto,&nbsp;Bikal Ghimire,&nbsp;Yogendra Prasad Singh,&nbsp;Simit Sapkota,&nbsp;Sunil Shrestha","doi":"10.1111/jep.70034","DOIUrl":"https://doi.org/10.1111/jep.70034","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Financial conflicts of interest (FCOIs) between pharmaceutical companies and clinical practice guideline (CPG) authors can influence guideline recommendations, posing challenges to patient care. Despite global concerns, limited research exists on FCOI awareness among healthcare professionals in lower-middle-income countries like Nepal.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This cross-sectional study, conducted between June 2020 and January 2021, aimed to assess FCOI awareness among Nepalese oncologists and identify associated factors. Data were collected through an online survey of 102 oncologists selected from three medical societies. Descriptive statistics and Fisher's exact tests were used for analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of the participants, 64 (63%) considered FCOIs between pharmaceutical companies and CPG authors when implementing guidelines. Significant associations were found between FCOI consideration and three factors: type of CPGs used, with higher consideration among users of national (80%) and international guidelines (69%) compared with local guidelines (44%) (<i>p</i> = 0.04); place of medical education, with higher consideration among Nepal-trained physicians (77%) compared with those trained abroad (61%) or both (44%) (<i>p</i> = 0.012); and experience in cancer field, with higher consideration among those with less than 10 years of experience (75%) compared with those having 10-20 years (49%) or more than 20 years (63%) of experience (<i>p</i> = 0.033).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>While nearly two-thirds of Nepalese oncologists consider FCOIs when implementing CPGs, enhancing awareness among the remaining one-third is crucial. The findings suggest the need for targeted educational programs and stronger FCOI disclosure mechanisms, particularly as Nepal develops its own CPGs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446959","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Spiritual Care Experiences of Nurses Working in Gynecology Clinic: A Qualitative Research
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-17 DOI: 10.1111/jep.70030
Fatma Başaran, Merve Şahin, Hava Salık
{"title":"Spiritual Care Experiences of Nurses Working in Gynecology Clinic: A Qualitative Research","authors":"Fatma Başaran,&nbsp;Merve Şahin,&nbsp;Hava Salık","doi":"10.1111/jep.70030","DOIUrl":"https://doi.org/10.1111/jep.70030","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Rationale</h3>\u0000 \u0000 <p>Pregnancy and childbirth are among the most important events in a woman's reproductive life. In this process with full of uncertainties, nurses who provide primary care to women play a key role. Spiritual care is an important part of holistic care and an indicator of quality of care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>This research aims to thoroughly examine and describe the spiritual care experiences of nurses working in obstetrics and gynecology clinics specific to their clinics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study was carried out based on the descriptive phenomenology type of phenomenology design, one of the qualitative research methods. The study group included nurses in gynecology clinics in different provinces and hospitals in Turkey. The criterion sampling method, one of the purposive sampling methods, was used, and 12 nurses comprised the sample size. A semi-structured interview form was used to collect the data. In evaluating the obtained data, thematic content analysis and MAXQDA 22 software were used. The study was written based on the COREQ checklist.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The data obtained from the interviews were analyzed under six themes: the concept of spiritual care, spiritual care practices, factors complicating spiritual care, factors facilitating spiritual care, emotional effects of spiritual care, and recommendations on the best way to provide spiritual care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>It is vital to train gynecology nurses in spiritual care, reduce their workload, and develop clinical practice guidelines. Increasing the awareness of obstetric nurses about the factors affecting their spiritual care experiences while caring for individuals in clinical practices will contribute to increasing the quality of nursing care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jep.70030","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143424286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Clinical Support System for Healthcare Providers Using Big Data Analytics
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-17 DOI: 10.1111/jep.70014
K. Arunmozhi Arasan, E. Ramaraj, A. Padmapriya
{"title":"Clinical Support System for Healthcare Providers Using Big Data Analytics","authors":"K. Arunmozhi Arasan,&nbsp;E. Ramaraj,&nbsp;A. Padmapriya","doi":"10.1111/jep.70014","DOIUrl":"https://doi.org/10.1111/jep.70014","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The healthcare industry is rapidly evolving due to digital innovation and technological advancements. The increasing volume of healthcare data necessitates efficient analytical methods to extract meaningful insights. Traditional health data analysis platforms primarily focus on data collection, aggregation, processing, analysis, visualisation, and interpretation. However, challenges remain in optimising these processes for effective disease prediction and decision-making.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study proposes the k-means termite clustering model (KTCM) as a novel optimisation approach for healthcare data analysis. The model integrates graph reduction techniques for data preprocessing, followed by storage in a clinical database. A mining algorithm is employed to analyse the processed data, enhancing predictive accuracy. Healthcare professionals receive training on standardised prediction methodologies to refine disease forecasting based on historical benchmarks. The model's performance is evaluated using statistical metrics, including <i>R</i>², REMS, MSE, MAE and MAPE.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The proposed KTCM model demonstrates superior predictive performance, achieving an <i>R</i>² value of 99.7%, surpassing other existing methods. The advanced clustering and optimisation techniques improve the accuracy and efficiency of disease prediction, thereby aiding healthcare professionals in making informed decisions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The KTCM approach significantly enhances healthcare data analysis by optimising disease prediction through efficient clustering and mining techniques. The model's high accuracy and improved parameter optimisation validate its effectiveness in clinical decision support. Future work may explore further refinements in algorithmic performance and real-time implementation in healthcare systems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143423812","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Capturing Real-World Rare Disease Patient Journeys: Are Current Methodologies Sufficient for Informed Healthcare Decisions?
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-17 DOI: 10.1111/jep.70010
Kristen A. Cribbs, Lucas T. A. Blackmore, Asia R. Banks, Da Sol Kim, Betsy J. Lahue
{"title":"Capturing Real-World Rare Disease Patient Journeys: Are Current Methodologies Sufficient for Informed Healthcare Decisions?","authors":"Kristen A. Cribbs,&nbsp;Lucas T. A. Blackmore,&nbsp;Asia R. Banks,&nbsp;Da Sol Kim,&nbsp;Betsy J. Lahue","doi":"10.1111/jep.70010","DOIUrl":"https://doi.org/10.1111/jep.70010","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Rationale&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Despite growing emphasis among healthcare decision-makers on patient perspectives and real-world outcomes to inform care and access decisions, understanding of patient journey experiences in rare diseases remains limited due to data collection and evaluation challenges.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Aims and Objectives&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This systematic literature review (SLR) assessed study designs, methodologies, and outcomes reported in real-world investigations of rare disease patient journeys.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Searches in PubMed and Google Scholar targeted English-language publications and congress proceedings from 1 January 2014, to 30 April 2024, including rare disease patients, caregivers, or healthcare providers. Keywords included ‘Journey’, ‘Path’, or ‘Odyssey’. Two reviewers independently assessed eligibility and abstracted data. Descriptive analyses and quality assessments were conducted.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Thirty-one studies met inclusion criteria, with 296,548 participants spanning over 600 rare diseases. Most studies used prospective observational (61%) and cross-sectional (26%) designs and were conducted in Europe (45%). Interviews (39%) and surveys (29%) were common methodologies. Patients (87%) were the primary research focus, compared to caregivers (32%) or providers (10%). The most studied journey stages were ‘Pre-diagnosis/Screening’ (97%) and ‘Diagnosis’ (84%), while ‘Disease Awareness’ (16%) and ‘Treatment Adherence’ (6%) were less common. Across 164 outcomes reported, frequent outcomes included ‘Healthcare Resource Utilization’ (94%), ‘Symptoms’ (74%), and ‘Time-to-Diagnosis’ (71%). Fewer studies reported ‘Costs’ (19%), ‘Caregiver/Family Burden’ (16%), and ‘Productivity’ (13%). Time-to-diagnosis averaged 11.8 years and a median of 6.1 years. All but one study (97%) was rated low or very low quality due to observational designs.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Most rare disease patient journey evidence focuses on ‘Pre-diagnosis/Screening’ and ‘Diagnosis’ stages using qualitative methods and surveys. While symptoms, time-to-diagnosis, and resource utilization were commonly reported, evidence gaps included treatment adherence, caregiver burden and productivity. Longitudinal assessments to collect real-world care and treatment burden outcomes, including caregiver perspectives, can enhance both clinician and policy decision-making","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jep.70010","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143423813","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Usability and User's Satisfaction of an Electronic Case Report Form Implemented in the REDCap System in the HIV Clinical Research Context: The Use Case of DOLAM Clinical Trial
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-12 DOI: 10.1111/jep.70020
Elisa De Lazzari, Montserrat Laguno, Josep Mallolas, Esteban Martínez
{"title":"Usability and User's Satisfaction of an Electronic Case Report Form Implemented in the REDCap System in the HIV Clinical Research Context: The Use Case of DOLAM Clinical Trial","authors":"Elisa De Lazzari,&nbsp;Montserrat Laguno,&nbsp;Josep Mallolas,&nbsp;Esteban Martínez","doi":"10.1111/jep.70020","DOIUrl":"https://doi.org/10.1111/jep.70020","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The clinical data management within biomedical research has gained importance over the last decade producing an increasing need of a web-based software application providing electronic data capture and clinical data management functionalities to ensure high quality data. We chose REDCap system over OpenClinica (free-distribution) to implement the electronic case report form (eCRF) at our HIV Unit. We then evaluated eCRF usability and stakeholder satisfaction in an upcoming Phase 4 clinical trial.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We assessed the perceived usability of the eCRF by different professional users, including nurses, researchers, study monitors and coordinators of the phase-4 clinical trial, and their satisfaction using the System Usability Scale (SUS) questionnaire and the Net Promoter Score (NPS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Nineteen out of 21 persons involved agreed to participate. All were female, with mean age of 35 years (SD: 7), 11 were study coordinators or monitors, 5 nurses and 3 clinicians/researchers. The median SUS was 72.5 (IQR: 62.5; 80.0): monitors/study coordinators had median score of 77.5, researchers/clinicians, 72.5 and nurses, 57.5. Less Information Technology (IT) or computer-experienced scored higher 92.5 (57.5; 95.0) versus more experienced 71.3 (62.5; 78.8). The overall NPS (% promoters–% detractors) was 21.1, 7 (37%) users were promoters, 9 (47%) passives and 3 (16%) detractors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>When adopting a new system, measuring user's perceived usability and satisfaction in a quantitative manner and with validated measures may be useful to identify users' uncovered needs and to improve future interaction user-system that will positively affect the quality of data managed in clinical research.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143397109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Remote Spirometry, Education, and Action for COPD Diagnosis and Management in Rural and Medically Underserved Settings in South Carolina: Protocol for an Observational Feasibility Study
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-12 DOI: 10.1111/jep.70003
Sarah N. Miller, Susan McCabe, Emily Morgan, Ramzy Al Hourany, Michelle Nichols, Terri Fowler, Whitney Smith, Cathy Durham, MaryChris Pittman, Mohan Madisetti, Ronald Teufel II, Andrea Swartz, Charlie Strange
{"title":"Remote Spirometry, Education, and Action for COPD Diagnosis and Management in Rural and Medically Underserved Settings in South Carolina: Protocol for an Observational Feasibility Study","authors":"Sarah N. Miller,&nbsp;Susan McCabe,&nbsp;Emily Morgan,&nbsp;Ramzy Al Hourany,&nbsp;Michelle Nichols,&nbsp;Terri Fowler,&nbsp;Whitney Smith,&nbsp;Cathy Durham,&nbsp;MaryChris Pittman,&nbsp;Mohan Madisetti,&nbsp;Ronald Teufel II,&nbsp;Andrea Swartz,&nbsp;Charlie Strange","doi":"10.1111/jep.70003","DOIUrl":"https://doi.org/10.1111/jep.70003","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 &lt;p&gt;Individuals living in rural or medically underserved areas (MUA) with chronic obstructive pulmonary disease (COPD) face significant barriers to specialised pulmonary care, including pulmonologists, diagnostic spirometry, and pulmonary rehabilitation. Remote spirometry for diagnostic screening and disease monitoring may mitigate access barriers and contribute to improved COPD management in this population. This study protocol describes the proposed implementation of a Mobile Health (mHealth) intervention using Bluetooth-enabled portable spirometry combined with a mobile disease management platform.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The purpose of this study is to evaluate the acceptability and feasibility of an mHealth intervention with Bluetooth-enabled remote spirometry for remote patient monitoring of patients with COPD who are living in rural and/or medically underserved areas of South Carolina. Our exploratory aim is to investigate the potential benefits of remote monitoring and telehealth education on disease symptoms, dyspnoea, and COPD management. Our long-term goal is to expand access, employ evidence-based data, and support shared decision-making in diagnosing and managing underserved patients with COPD.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This is a 2-stage prospective observational study. In stage 1, healthcare providers who care for this population will participate in a focus group to explore provider perspectives and preferences toward implementation of remote spirometry in a medically underserved setting. Potential barriers and facilitators will be identified, and if needed, study implementation procedures will be refined based on provider feedback. In stage 2, a target of 120 adults with COPD will be recruited using a combination of direct study referrals, cold contact methods, community partners' recruitment, flyers, and social media posts. Screened and consented subjects will receive training on using the mHealth application and remote spirometer. Survey measures will be collected at baseline and repeated at months 1, 3, and 6, followed by an exit survey at the study conclusion. Using end-of-study questionnaire and repeated measures, we will evaluate feasibility by obtaining variability estimates for secondary outcome measures. Semi-structured key informant interviews will be conducted to explore patient preferences, potential barriers, acceptability, and recommendations for future intervention refinement.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;An mHealth intervention using Bluetooth-enabled remote portable spirometry is a potential solution to expanding healthcare access and improving outcomes in un","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143397110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Current Status and Factors Influencing the Discharge Readiness of Parents of Children With Pneumonia: A Cross-Sectional Survey 肺炎患儿家长的出院准备现状及影响因素:横断面调查
IF 2.1 4区 医学
Journal of evaluation in clinical practice Pub Date : 2025-02-12 DOI: 10.1111/jep.70009
Yue Wang, Chuan Ying Zhang, Gui Yue Ma, Wei Wei
{"title":"The Current Status and Factors Influencing the Discharge Readiness of Parents of Children With Pneumonia: A Cross-Sectional Survey","authors":"Yue Wang,&nbsp;Chuan Ying Zhang,&nbsp;Gui Yue Ma,&nbsp;Wei Wei","doi":"10.1111/jep.70009","DOIUrl":"https://doi.org/10.1111/jep.70009","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Pneumonia is the primary cause of pediatric hospitalization and the most frequent cause of death among children under the age of five in China. The parental discharge teaching quality and discharge readiness have a significant impact on children's health outcomes and readmission.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Research Aim</h3>\u0000 \u0000 <p>The study was conducted to assess the discharge readiness and the quality of discharge teaching of parents of children with pneumonia, examine their relationship, and identify key influencing factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A cross-sectional study was conducted from May to October 2023. Participants, a total of 202 parents, were given anonymous questionnaires on the day of discharge, including the Readiness for Hospital Discharge Scale—Parent Form and the Quality of Discharge Teaching Scale—Parent Form.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The results showed a medium level of discharge readiness and a low level of discharge teaching quality. Additionally, there was a strong positive association between the aforementioned. The quality of discharge teaching, parents' perceived severity of the child's illness, the child's age and the child's disease status were the main factors determining discharge readiness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Pediatricians are encouraged to consider this outcome to develop targeted interventions that improve parental discharge teaching, discharge readiness and post-discharge outcomes for children with pneumonia.</p>\u0000 </section>\u0000 </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143397108","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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