Objective: Patient reported experience measures (PREMs) are common tools utilised in hospitals to support quality improvements, allow consumers to provide feedback on care experiences and can be used to support consumers' hospital selections. This study aimed to understand the views and opinions of private hospital staff on PREM use and the utility of PREMs as a consumer decision-making tool.
Method: Qualitative, semi-structured interview study conducted via telephone between March-June 2023. Participants (n = 10) were recruited from major private healthcare providers in Australia with half representing hospital-based staff and the other half corporate head office staff who work in patient experience and quality. Interviews were audio-recorded, transcribed, and analysed thematically.
Results: PREM benefits included an understanding of patient experience that improved provision of patient centred care with feedback acting as catalyst for change, to corporate-level strategic initiatives that address specific issues. Drawbacks of PREM reporting included concerns around skewed results by biased respondents, and completion based on hard to alter items (e.g., infrastructure) or on matters outside of hospital control (e.g., insurance). Staff had mixed reactions to consumers using PREMs results when selecting a hospital, some advocated for transparency while others feared consumers would misinterpret the data.
Conclusions: Improved real-time reporting of PREMs, learning from other industries about recording customer experience, and mandatory reporting by private hospitals could further the benefits of PREM measurement in private healthcare. Recognised was the need for PREMs to be displayed in a readily understood way so those with limited health literacy can correctly interpret.
{"title":"Australian private healthcare staff perspectives on patient reported experience measures (PREMs): a qualitative interview study.","authors":"Krista Verlis, Kirsten McCaffery, Tessa Copp, Rachael Dodd, Brooke Nickel, Rebekah Laidsaar-Powell","doi":"10.1186/s41687-024-00809-6","DOIUrl":"10.1186/s41687-024-00809-6","url":null,"abstract":"<p><strong>Objective: </strong>Patient reported experience measures (PREMs) are common tools utilised in hospitals to support quality improvements, allow consumers to provide feedback on care experiences and can be used to support consumers' hospital selections. This study aimed to understand the views and opinions of private hospital staff on PREM use and the utility of PREMs as a consumer decision-making tool.</p><p><strong>Method: </strong>Qualitative, semi-structured interview study conducted via telephone between March-June 2023. Participants (n = 10) were recruited from major private healthcare providers in Australia with half representing hospital-based staff and the other half corporate head office staff who work in patient experience and quality. Interviews were audio-recorded, transcribed, and analysed thematically.</p><p><strong>Results: </strong>PREM benefits included an understanding of patient experience that improved provision of patient centred care with feedback acting as catalyst for change, to corporate-level strategic initiatives that address specific issues. Drawbacks of PREM reporting included concerns around skewed results by biased respondents, and completion based on hard to alter items (e.g., infrastructure) or on matters outside of hospital control (e.g., insurance). Staff had mixed reactions to consumers using PREMs results when selecting a hospital, some advocated for transparency while others feared consumers would misinterpret the data.</p><p><strong>Conclusions: </strong>Improved real-time reporting of PREMs, learning from other industries about recording customer experience, and mandatory reporting by private hospitals could further the benefits of PREM measurement in private healthcare. Recognised was the need for PREMs to be displayed in a readily understood way so those with limited health literacy can correctly interpret.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11541965/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584586","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-11-05DOI: 10.1186/s41687-024-00806-9
Matthias Marsall, Thorsten Hornung, Alexander Bäuerle, Marianne E Weiss, Martin Teufel, Matthias Weigl
Background: Patients transitioning between different care contexts are at increased risk of experiencing adverse events. In particular, being discharged to home after inpatient treatment involves significant risks. However, there is a lack of valid and internationally comparable assessment tools on patients' experiences of difficulties following hospital discharge. Therefore, this study aimed to adapt and validate the German version of the post-discharge coping difficulty scale (PDCDS-G).
Methods: Patients were recruited at a German university hospital. 815 adult patients participated in a self-report survey following an inpatient stay of at least three days. Factorial validity of the PDCDS-G was evaluated via factor analyses. Further, examination of measurement invariance was performed. To establish criterion validity, associations with patients' self-reported health status and occurrence of patient safety were determined. Further, group differences regarding patient characteristics, hospitalization factors, and survey-related variables were examined.
Results: Factorial validity of the PDCDS-G was confirmed by a two-factorial model with good model fit. Both factors showed good to excellent reliability. The two-factor model achieved measurement invariance across all patient characteristics, hospitalization factors, and survey-related variables. Significant relationships with patients' health status and the occurrence of patient safety incidents corroborate criterion validity of the PDCDS-G. Differential associations of the two PDCDS-G factors regarding patient characteristics, hospitalization, and survey-related variables were found.
Discussion: Construct and criterion validity, as well as the reliability of the PDCDS-G, were verified. Further, instrument's measurement invariance was confirmed allowing use of the scale for the interpretation of group differences and comparisons between studies.
Conclusions: The PDCDS-G provides a validated and comparable patient-reported outcomes measure for patient experiences after hospital discharge to home. The PDCDS-G can be used for patient surveys in quality or patient safety improvement in care transition processes.
{"title":"Coping difficulties after inpatient hospital treatment: validity and reliability of the German version of the post-discharge coping difficulty scale.","authors":"Matthias Marsall, Thorsten Hornung, Alexander Bäuerle, Marianne E Weiss, Martin Teufel, Matthias Weigl","doi":"10.1186/s41687-024-00806-9","DOIUrl":"10.1186/s41687-024-00806-9","url":null,"abstract":"<p><strong>Background: </strong>Patients transitioning between different care contexts are at increased risk of experiencing adverse events. In particular, being discharged to home after inpatient treatment involves significant risks. However, there is a lack of valid and internationally comparable assessment tools on patients' experiences of difficulties following hospital discharge. Therefore, this study aimed to adapt and validate the German version of the post-discharge coping difficulty scale (PDCDS-G).</p><p><strong>Methods: </strong>Patients were recruited at a German university hospital. 815 adult patients participated in a self-report survey following an inpatient stay of at least three days. Factorial validity of the PDCDS-G was evaluated via factor analyses. Further, examination of measurement invariance was performed. To establish criterion validity, associations with patients' self-reported health status and occurrence of patient safety were determined. Further, group differences regarding patient characteristics, hospitalization factors, and survey-related variables were examined.</p><p><strong>Results: </strong>Factorial validity of the PDCDS-G was confirmed by a two-factorial model with good model fit. Both factors showed good to excellent reliability. The two-factor model achieved measurement invariance across all patient characteristics, hospitalization factors, and survey-related variables. Significant relationships with patients' health status and the occurrence of patient safety incidents corroborate criterion validity of the PDCDS-G. Differential associations of the two PDCDS-G factors regarding patient characteristics, hospitalization, and survey-related variables were found.</p><p><strong>Discussion: </strong>Construct and criterion validity, as well as the reliability of the PDCDS-G, were verified. Further, instrument's measurement invariance was confirmed allowing use of the scale for the interpretation of group differences and comparisons between studies.</p><p><strong>Conclusions: </strong>The PDCDS-G provides a validated and comparable patient-reported outcomes measure for patient experiences after hospital discharge to home. The PDCDS-G can be used for patient surveys in quality or patient safety improvement in care transition processes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11538096/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: To critically examine the current state of machine learning (ML) models including patient-reported outcome measure (PROM) scores in cancer research, by investigating the reporting quality of currently available studies and proposing areas of improvement for future use of ML in the field.
Methods: PubMed and Web of Science were systematically searched for publications of studies on patients with cancer applying ML models with PROM scores as either predictors or outcomes. The reporting quality of applied ML models was assessed utilizing an adapted version of the MI-CLAIM (Minimum Information about CLinical Artificial Intelligence Modelling) checklist. The key variables of the checklist are study design, data preparation, model development, optimization, performance, and examination. Reproducibility and transparency complement the reporting quality criteria.
Results: The literature search yielded 1634 hits, of which 52 (3.2%) were eligible. Thirty-six (69.2%) publications included PROM scores as a predictor and 32 (61.5%) as an outcome. Results of the reporting quality appraisal indicate a potential for improvement, especially in the areas of model examination. According to the standards of the MI-CLAIM checklist, the reporting quality of ML models in included studies proved to be low. Only nine (17.3%) publications present a discussion about the clinical applicability of the developed model and reproducibility and only three (5.8%) provide a code to reproduce the model and the results.
Conclusion: The herein performed critical examination of the status quo of the application of ML models including PROM scores in published oncological studies allowed the identification of areas of improvement for reporting and future use of ML in the field.
目的：通过调查当前可用研究的报告质量，批判性地审视包括癌症研究中患者报告结果测量（PROM）评分在内的机器学习（ML）模型的现状，并提出未来在该领域使用 ML 的改进领域：方法：在 PubMed 和 Web of Science 上系统地搜索了有关癌症患者的研究出版物，这些研究应用了以 PROM 评分作为预测因子或结果的 ML 模型。采用改编版的 MI-CLAIM（Minimum Information about CLinical Artificial Intelligence Modelling，临床人工智能建模最低信息）核对表对应用 ML 模型的报告质量进行评估。该清单的关键变量包括研究设计、数据准备、模型开发、优化、性能和检查。可重复性和透明度是报告质量标准的补充：文献检索共搜索到 1634 篇文献，其中 52 篇（3.2%）符合条件。36篇（69.2%）文献将 PROM 评分作为预测指标，32 篇（61.5%）文献将 PROM 评分作为结果指标。报告质量评估结果表明，尤其是在模型检查方面有改进的可能。根据 MI-CLAIM 检查表的标准，所纳入研究中 ML 模型的报告质量较低。只有 9 篇（17.3%）论文讨论了所开发模型的临床适用性和可重复性，只有 3 篇（5.8%）论文提供了重现模型和结果的代码：本文对已发表的肿瘤研究中应用 ML 模型（包括 PROM 评分）的现状进行了批判性审查，从而确定了该领域报告和未来使用 ML 的改进领域。
{"title":"Machine learning models including patient-reported outcome data in oncology: a systematic literature review and analysis of their reporting quality.","authors":"Daniela Krepper, Matteo Cesari, Niclas J Hubel, Philipp Zelger, Monika J Sztankay","doi":"10.1186/s41687-024-00808-7","DOIUrl":"10.1186/s41687-024-00808-7","url":null,"abstract":"<p><strong>Purpose: </strong>To critically examine the current state of machine learning (ML) models including patient-reported outcome measure (PROM) scores in cancer research, by investigating the reporting quality of currently available studies and proposing areas of improvement for future use of ML in the field.</p><p><strong>Methods: </strong>PubMed and Web of Science were systematically searched for publications of studies on patients with cancer applying ML models with PROM scores as either predictors or outcomes. The reporting quality of applied ML models was assessed utilizing an adapted version of the MI-CLAIM (Minimum Information about CLinical Artificial Intelligence Modelling) checklist. The key variables of the checklist are study design, data preparation, model development, optimization, performance, and examination. Reproducibility and transparency complement the reporting quality criteria.</p><p><strong>Results: </strong>The literature search yielded 1634 hits, of which 52 (3.2%) were eligible. Thirty-six (69.2%) publications included PROM scores as a predictor and 32 (61.5%) as an outcome. Results of the reporting quality appraisal indicate a potential for improvement, especially in the areas of model examination. According to the standards of the MI-CLAIM checklist, the reporting quality of ML models in included studies proved to be low. Only nine (17.3%) publications present a discussion about the clinical applicability of the developed model and reproducibility and only three (5.8%) provide a code to reproduce the model and the results.</p><p><strong>Conclusion: </strong>The herein performed critical examination of the status quo of the application of ML models including PROM scores in published oncological studies allowed the identification of areas of improvement for reporting and future use of ML in the field.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11538124/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-25DOI: 10.1186/s41687-024-00792-y
Saba Rasheed, Anees Ur Rehman, Zermina Tasleem, Marryam Azeem, Muhammad Fawad Rasool, Arifa Mehreen, Saleh Karamah Al-Tamimi
Background: Psychological Insulin Resistance (PIR) and negative perceptions regarding insulin treatment are noteworthy challenges in T2DM management, which hinder the timely initiation of insulin treatment. To get past these obstacles a reliable tool is required to evaluate patients' perspectives on insulin administration. Our study aims to conduct a comprehensive systematic review to evaluate the validity and reliability of different validation tests used in the psychometric validation of the ITAS in T2DM patients.
Methods: A literature search was carried out, using PubMed, Google Scholar, EMBASE, Cochrane Library and Science Direct. Only those studies assessing content validity, construct validity, concurrent validity, discriminant validity, internal consistency reliability (Cronbach' α), and items-total correlation were retrieved.
Results: A total of 14 studies illustrated the validity and reliability of ITAS in T2DM patients. Content validity results of S-CVI was 0.97, and I-CVI was 0.8-1.00. Construct validity with factor loading was greater than the threshold value of 0.3. The concurrent validity of ITAS vs. PAID, WHO-5, and SPI was 0.35 (P < 0.05), -0.14 (P < 0.05), and 0.80 (P < 0.001) respectively. The mean difference between insulin and non-insulin group was significant (P < 0.001) showing reliable discriminant validity. Reported results of Cronbach's α for the main scale (0.79-0.89), subscale-1 (0.72-0.9), and subscale-2 (0.61-0.89) showed "good to excellent" internal consistency reliability of ITAS. Item-total correlation results for the main scale, subscale-1, and subscale-2 were (0.40-0.82), (0.31-0.74) and (0.34-0.58) respectively. Test-retest reliability of ITAS was 0.571-0.87.
Conclusions: Study findings confirm the robustness of various validation tests utilized in the psychometric validation of ITAS in T2DM patients. ITAS is a well-validated and reliable tool for determining the perspectives, PIR, and changes in patients' perception over time and it can be used to overcome hurdles in the timely initiation of insulin treatment in T2DM patients.
{"title":"Tests employed in the psychometric validation of the Insulin Treatment Appraisal Scale (ITAS) in T2DM patients; a systematic review of the literature.","authors":"Saba Rasheed, Anees Ur Rehman, Zermina Tasleem, Marryam Azeem, Muhammad Fawad Rasool, Arifa Mehreen, Saleh Karamah Al-Tamimi","doi":"10.1186/s41687-024-00792-y","DOIUrl":"https://doi.org/10.1186/s41687-024-00792-y","url":null,"abstract":"<p><strong>Background: </strong>Psychological Insulin Resistance (PIR) and negative perceptions regarding insulin treatment are noteworthy challenges in T2DM management, which hinder the timely initiation of insulin treatment. To get past these obstacles a reliable tool is required to evaluate patients' perspectives on insulin administration. Our study aims to conduct a comprehensive systematic review to evaluate the validity and reliability of different validation tests used in the psychometric validation of the ITAS in T2DM patients.</p><p><strong>Methods: </strong>A literature search was carried out, using PubMed, Google Scholar, EMBASE, Cochrane Library and Science Direct. Only those studies assessing content validity, construct validity, concurrent validity, discriminant validity, internal consistency reliability (Cronbach' α), and items-total correlation were retrieved.</p><p><strong>Results: </strong>A total of 14 studies illustrated the validity and reliability of ITAS in T2DM patients. Content validity results of S-CVI was 0.97, and I-CVI was 0.8-1.00. Construct validity with factor loading was greater than the threshold value of 0.3. The concurrent validity of ITAS vs. PAID, WHO-5, and SPI was 0.35 (P < 0.05), -0.14 (P < 0.05), and 0.80 (P < 0.001) respectively. The mean difference between insulin and non-insulin group was significant (P < 0.001) showing reliable discriminant validity. Reported results of Cronbach's α for the main scale (0.79-0.89), subscale-1 (0.72-0.9), and subscale-2 (0.61-0.89) showed \"good to excellent\" internal consistency reliability of ITAS. Item-total correlation results for the main scale, subscale-1, and subscale-2 were (0.40-0.82), (0.31-0.74) and (0.34-0.58) respectively. Test-retest reliability of ITAS was 0.571-0.87.</p><p><strong>Conclusions: </strong>Study findings confirm the robustness of various validation tests utilized in the psychometric validation of ITAS in T2DM patients. ITAS is a well-validated and reliable tool for determining the perspectives, PIR, and changes in patients' perception over time and it can be used to overcome hurdles in the timely initiation of insulin treatment in T2DM patients.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11511799/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142509729","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-22DOI: 10.1186/s41687-024-00801-0
Asiya Attar, Kasturi Shukla, Preeti Mulay
{"title":"Correction: Top 100 most cited articles on Patient Reported Experience Measures (PREM): insights and perspectives.","authors":"Asiya Attar, Kasturi Shukla, Preeti Mulay","doi":"10.1186/s41687-024-00801-0","DOIUrl":"10.1186/s41687-024-00801-0","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11496404/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476744","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-22DOI: 10.1186/s41687-024-00797-7
Manuela Di Fusco, Joseph C Cappelleri, Alon Yehoshua, Kelly J Thomas Craig, Mary B Alvarez, Kristen E Allen, Thomas M Porter, Santiago M C Lopez, Laura Puzniak, Xiaowu Sun
Background: Evidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status.
Methods: A prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes.
Results: The study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, <2; Cluster 2 moderate, 2-6; and Cluster 3 high, >6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster.
Conclusion: Three distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes.
{"title":"Associations between symptom-based long COVID clusters and long-term quality of life, work and daily activities among individuals testing positive for SARS-CoV-2 at a national retail pharmacy.","authors":"Manuela Di Fusco, Joseph C Cappelleri, Alon Yehoshua, Kelly J Thomas Craig, Mary B Alvarez, Kristen E Allen, Thomas M Porter, Santiago M C Lopez, Laura Puzniak, Xiaowu Sun","doi":"10.1186/s41687-024-00797-7","DOIUrl":"10.1186/s41687-024-00797-7","url":null,"abstract":"<p><strong>Background: </strong>Evidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status.</p><p><strong>Methods: </strong>A prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes.</p><p><strong>Results: </strong>The study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, <2; Cluster 2 moderate, 2-6; and Cluster 3 high, >6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster.</p><p><strong>Conclusion: </strong>Three distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes.</p><p><strong>Clinical trial registration: </strong>Clinicaltrials.gov NCT05160636.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11496399/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-21DOI: 10.1186/s41687-024-00799-5
C Braaksma, N Wolterbeek, M R Veen, R W Poolman, Y Pronk, A D Klaassen, R W J G Ostelo, C B Terwee
Background: The commonly used ('legacy') PROMs evaluating outcomes of total hip arthroplasty (THA), have several limitations regarding their measurement properties and interpretation of scores. One innovation in PROMs is the use of Computerized Adaptive Testing (CAT). The Patient-Reported Outcomes Measurement Information System (PROMIS®) is a validated system of CATs. The aim of this study was to assess the measurement properties of PROMIS and legacy instruments in patients undergoing THA.
Methodology: Patients in this multicenter study filled out a questionnaire twice, including Dutch-Flemish PROMIS v1.2 Physical Function (PROMIS-PF) and v1.1 Pain Interference (PROMIS-PI) CATs and short forms, PROMIS v1.0 Pain Intensity, and legacy PROMs (Hip disability and Osteoarthritis Outcome Score (HOOS), HOOS-Physical function Shortform (HOOS-PS), Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Oxford Hip Score (OHS), and two numeric rating scales measuring pain). The reliability, measurement precision (Standard Error of Measurement (SEM)), smallest detectable change (SDC), and burden of PROMIS instruments were presented head-to-head to legacy PROMs. Furthermore, construct validity was assessed.
Results: 208 patients were included. All instruments had a sufficient test-retest reliability (range ICC: 0.83-0.96). The SEM of PROMIS CATs and short forms ranged from 1.8 to 2.2 T-score points, the SEM of legacy instruments 2.6-11.1. The SDC of PROMIS instruments ranged from 2.1 to 7.3 T-score points, the SDC of legacy instruments 7.2-30.9. The construct validity of PROMIS CAT and short forms were found sufficient, except for the PROMIS-PI short form. The burden of PROMIS CATs was smaller than PROMIS short forms (range 4.8-5.2 versus 8-20 items, respectively). The burden of legacy instruments measuring physical functioning ranged from 5 to 40 items.
Conclusions: The PROMIS-PF is less burdensome, with high measurement precision, and almost no minimal or maximal scores, and an equal reliability compared to legacy instruments measuring physical functioning in patients undergoing THA. The PROMIS Pain Intensity 1a is comparable to the legacy pain instruments in terms of burden, reliability and SDC. Measuring the construct Pain Interference may not have additional value in this population because of its high correlation with instruments measuring physical functioning. The SDC values presented in this study can be used for individual patient monitoring.
{"title":"Assessing the measurement properties of PROMIS Computer Adaptive Tests, short forms and legacy patient reported outcome measures in patients undergoing total hip arthroplasty.","authors":"C Braaksma, N Wolterbeek, M R Veen, R W Poolman, Y Pronk, A D Klaassen, R W J G Ostelo, C B Terwee","doi":"10.1186/s41687-024-00799-5","DOIUrl":"10.1186/s41687-024-00799-5","url":null,"abstract":"<p><strong>Background: </strong>The commonly used ('legacy') PROMs evaluating outcomes of total hip arthroplasty (THA), have several limitations regarding their measurement properties and interpretation of scores. One innovation in PROMs is the use of Computerized Adaptive Testing (CAT). The Patient-Reported Outcomes Measurement Information System (PROMIS<sup>®</sup>) is a validated system of CATs. The aim of this study was to assess the measurement properties of PROMIS and legacy instruments in patients undergoing THA.</p><p><strong>Methodology: </strong>Patients in this multicenter study filled out a questionnaire twice, including Dutch-Flemish PROMIS v1.2 Physical Function (PROMIS-PF) and v1.1 Pain Interference (PROMIS-PI) CATs and short forms, PROMIS v1.0 Pain Intensity, and legacy PROMs (Hip disability and Osteoarthritis Outcome Score (HOOS), HOOS-Physical function Shortform (HOOS-PS), Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Oxford Hip Score (OHS), and two numeric rating scales measuring pain). The reliability, measurement precision (Standard Error of Measurement (SEM)), smallest detectable change (SDC), and burden of PROMIS instruments were presented head-to-head to legacy PROMs. Furthermore, construct validity was assessed.</p><p><strong>Results: </strong>208 patients were included. All instruments had a sufficient test-retest reliability (range ICC: 0.83-0.96). The SEM of PROMIS CATs and short forms ranged from 1.8 to 2.2 T-score points, the SEM of legacy instruments 2.6-11.1. The SDC of PROMIS instruments ranged from 2.1 to 7.3 T-score points, the SDC of legacy instruments 7.2-30.9. The construct validity of PROMIS CAT and short forms were found sufficient, except for the PROMIS-PI short form. The burden of PROMIS CATs was smaller than PROMIS short forms (range 4.8-5.2 versus 8-20 items, respectively). The burden of legacy instruments measuring physical functioning ranged from 5 to 40 items.</p><p><strong>Conclusions: </strong>The PROMIS-PF is less burdensome, with high measurement precision, and almost no minimal or maximal scores, and an equal reliability compared to legacy instruments measuring physical functioning in patients undergoing THA. The PROMIS Pain Intensity 1a is comparable to the legacy pain instruments in terms of burden, reliability and SDC. Measuring the construct Pain Interference may not have additional value in this population because of its high correlation with instruments measuring physical functioning. The SDC values presented in this study can be used for individual patient monitoring.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11493881/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-18DOI: 10.1186/s41687-024-00794-w
Josephine J Koldenhof, Bernice O Akpobome, Danielle Zweers, Stance Klaasse, Saskia C C M Teunissen, Petronella O Witteveen, Karijn P M Suijkerbuijk, Alexander de Graeff, Frederieke H van der Baan
Introduction: The Utrecht Symptom Diary (USD) is a validated Dutch patient-reported outcome measurement (PROM) tool - based on the Edmonton Symptom Assessment System - to assess and monitor symptoms in cancer patients. The USD contains 11 items concerning frequently occurring symptoms in cancer patients (pain, sleeping problems, dry mouth, dysphagia, lack of appetite, abnormal stool, nausea, shortness of breath, fatigue, anxiety and depressed mood) and an item on overall well-being. For the outpatient USD 11 items concerning frequently occurring signs and symptoms in patients receiving chemotherapy and/or targeted therapy were added to the USD: taste alteration, oral pain, weight loss, diarrhoea, hair changes, skin problems, nail problems, eye problems, tingling, concentration problems and problems with sexuality. This current study aimed to evaluate the 11 added items on this treatment specific outpatient USD in cancer patients receiving intravenous chemotherapy and/or targeted therapy.
Methods: Observational longitudinal retrospective cohort study including all adult outpatients with cancer receiving intravenous chemotherapy and/or targeted therapy in an academic hospital in the Netherlands who completed at least one outpatient USD as part of routine care (2012-2021). Relevance, comprehensiveness as well as criterion and construct validity were assessed.
Results: 1733 patients who completed ≥ 1 outpatient USD during intravenous chemotherapy and/or targeted therapy were included for analysis. Relevance as well as comprehensiveness of the items on the outpatient USD in this patient population was shown. Criterion validation was demonstrated for all added items of the outpatient USD - except for the item on oral pain. An additional analysis showed that mouth problems were detected with both outpatient USD items oral pain and dry mouth. Construct validity was demonstrated for the items hair changes and skin and nail problems. Construct validity on eye problems was not tested due to the low number of paired outpatient USDs.
Conclusions: The treatment specific outpatient USD is a validated PROM in outpatients with cancer receiving intravenous chemotherapy and/or targeted therapy. Considering its validity in this broad group of patients, we think the treatment-specific outpatient USD is widely applicable. In addition to providing tailored supportive symptom care, the USD-data can be used to increase knowledge about symptom burden in daily practice in this population.
{"title":"Validation of 11 added items of the outpatient version of the Utrecht Symptom Diary in patients receiving chemotherapy or targeted therapy.","authors":"Josephine J Koldenhof, Bernice O Akpobome, Danielle Zweers, Stance Klaasse, Saskia C C M Teunissen, Petronella O Witteveen, Karijn P M Suijkerbuijk, Alexander de Graeff, Frederieke H van der Baan","doi":"10.1186/s41687-024-00794-w","DOIUrl":"https://doi.org/10.1186/s41687-024-00794-w","url":null,"abstract":"<p><strong>Introduction: </strong>The Utrecht Symptom Diary (USD) is a validated Dutch patient-reported outcome measurement (PROM) tool - based on the Edmonton Symptom Assessment System - to assess and monitor symptoms in cancer patients. The USD contains 11 items concerning frequently occurring symptoms in cancer patients (pain, sleeping problems, dry mouth, dysphagia, lack of appetite, abnormal stool, nausea, shortness of breath, fatigue, anxiety and depressed mood) and an item on overall well-being. For the outpatient USD 11 items concerning frequently occurring signs and symptoms in patients receiving chemotherapy and/or targeted therapy were added to the USD: taste alteration, oral pain, weight loss, diarrhoea, hair changes, skin problems, nail problems, eye problems, tingling, concentration problems and problems with sexuality. This current study aimed to evaluate the 11 added items on this treatment specific outpatient USD in cancer patients receiving intravenous chemotherapy and/or targeted therapy.</p><p><strong>Methods: </strong>Observational longitudinal retrospective cohort study including all adult outpatients with cancer receiving intravenous chemotherapy and/or targeted therapy in an academic hospital in the Netherlands who completed at least one outpatient USD as part of routine care (2012-2021). Relevance, comprehensiveness as well as criterion and construct validity were assessed.</p><p><strong>Results: </strong>1733 patients who completed ≥ 1 outpatient USD during intravenous chemotherapy and/or targeted therapy were included for analysis. Relevance as well as comprehensiveness of the items on the outpatient USD in this patient population was shown. Criterion validation was demonstrated for all added items of the outpatient USD - except for the item on oral pain. An additional analysis showed that mouth problems were detected with both outpatient USD items oral pain and dry mouth. Construct validity was demonstrated for the items hair changes and skin and nail problems. Construct validity on eye problems was not tested due to the low number of paired outpatient USDs.</p><p><strong>Conclusions: </strong>The treatment specific outpatient USD is a validated PROM in outpatients with cancer receiving intravenous chemotherapy and/or targeted therapy. Considering its validity in this broad group of patients, we think the treatment-specific outpatient USD is widely applicable. In addition to providing tailored supportive symptom care, the USD-data can be used to increase knowledge about symptom burden in daily practice in this population.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11489364/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476747","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-16DOI: 10.1186/s41687-024-00796-8
James D van Oppen, Simon P Conroy, Jagruti Lalseta, Nicola Mackintosh, Peter Riley, Vivien Richardson, Jose M Valderas, Timothy J Coats
Background: Current acute healthcare service metrics are not meaningful for older people living with frailty. Healthcare knowledge, situational security, and physical and psychosocial function are important outcomes typically not collected. The use of patient-reported outcome measures (PROMs) could support these assessments. Existing instruments are not comprehensive as they typically consider function, while older people with frailty also value enablement (self-determination and security in health and healthcare). This study field-tested and validated a PROM for older people with frailty receiving acute care (PROM-OPAC) to measure enablement.
Methods: People aged 65+ with Clinical Frailty Scale 5-8 were recruited within seventy-two hours of an emergency attendance. Iterations of the novel instrument were administered over three stages: (1) preliminary field-testing for reliability (response distribution and internal consistency) and structure (exploratory factor analysis, EFA); (2) intermediate field-testing of an improved instrument for reliability and structure; (3) final draft validation assessing reliability, structure (confirmatory factor analysis, CFA), and construct validity based on a priori hypotheses. Feasibility was appraised throughout using data completeness and response rates and times.
Results: 241 people participated. Three items of a preliminary seven-item measure had poor response distribution or loading and were accordingly improved. The intermediate instrument had interpretability issues and three items required further improvement. The final eight-item draft had acceptable reliability (Cronbach's alpha: 0.71), structure (two factors for self-determination and security; RMSEA: 0.065; TLI: 0.917; CFI: 0.944), and construct validity (lower scores from respondents waiting longer and requiring admission). Feasibility was promising (response rate 39%; 98% responses complete; median completion time 11 (IQR: 12) minutes).
Conclusions: Administration of the PROM-OPAC appeared feasible and the instrument had acceptable psychometric properties. Further evaluation is required to assess generalisability.
{"title":"The patient-reported outcome measure for older people living with frailty receiving acute care (PROM-OPAC): field-testing and validation.","authors":"James D van Oppen, Simon P Conroy, Jagruti Lalseta, Nicola Mackintosh, Peter Riley, Vivien Richardson, Jose M Valderas, Timothy J Coats","doi":"10.1186/s41687-024-00796-8","DOIUrl":"https://doi.org/10.1186/s41687-024-00796-8","url":null,"abstract":"<p><strong>Background: </strong>Current acute healthcare service metrics are not meaningful for older people living with frailty. Healthcare knowledge, situational security, and physical and psychosocial function are important outcomes typically not collected. The use of patient-reported outcome measures (PROMs) could support these assessments. Existing instruments are not comprehensive as they typically consider function, while older people with frailty also value enablement (self-determination and security in health and healthcare). This study field-tested and validated a PROM for older people with frailty receiving acute care (PROM-OPAC) to measure enablement.</p><p><strong>Methods: </strong>People aged 65+ with Clinical Frailty Scale 5-8 were recruited within seventy-two hours of an emergency attendance. Iterations of the novel instrument were administered over three stages: (1) preliminary field-testing for reliability (response distribution and internal consistency) and structure (exploratory factor analysis, EFA); (2) intermediate field-testing of an improved instrument for reliability and structure; (3) final draft validation assessing reliability, structure (confirmatory factor analysis, CFA), and construct validity based on a priori hypotheses. Feasibility was appraised throughout using data completeness and response rates and times.</p><p><strong>Results: </strong>241 people participated. Three items of a preliminary seven-item measure had poor response distribution or loading and were accordingly improved. The intermediate instrument had interpretability issues and three items required further improvement. The final eight-item draft had acceptable reliability (Cronbach's alpha: 0.71), structure (two factors for self-determination and security; RMSEA: 0.065; TLI: 0.917; CFI: 0.944), and construct validity (lower scores from respondents waiting longer and requiring admission). Feasibility was promising (response rate 39%; 98% responses complete; median completion time 11 (IQR: 12) minutes).</p><p><strong>Conclusions: </strong>Administration of the PROM-OPAC appeared feasible and the instrument had acceptable psychometric properties. Further evaluation is required to assess generalisability.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11484973/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476746","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Methodology: Data from the Adelphi OA Disease Specific Programme™, a survey of physicians and their consulting adult patients with OA conducted in the United States, November 2020 to March 2021, was used to assess the psychometric properties of the ADAQ. Patients completed the ADAQ, Adherence to Refills and Medication Scale (ARMS), Western Ontario and McMaster Universities Arthritis Index (WOMAC), and EQ-5D-3L. The measurement model of the 13-item ADAQ was assessed and refined using latent variable modelling (Multiple Indicator Multiple Cause, confirmatory and exploratory factor analyses, item response theory, Mokken scaling, and bifactor analyses). Correlational analyses (Spearman's rank and polyserial as appropriate) with ARMS, WOMAC, and EQ-5D-3L scores assessed construct validity. Anchor- and distribution-based analyses were performed to estimate between-group clinically important differences (CID).
Results: Overall, 723 patients were included in this analysis (54.5% female, 69.0% aged ≥ 60). Latent variable modelling indicated a unidimensional reflective model was appropriate, with a bifactor model confirming an 11-item essentially unidimensional score. Items 12 and 13 were excluded from scoring as they measured a different concept. The ADAQ had high internal reliability with omega hierarchical and Cronbach's alpha coefficients of 0.89 and 0.97, respectively. Convergent validity was supported by moderate correlations with items of the ARMS, and physician-reported adherence and compliance. Mean differences in ADAQ score between high and low adherence groups yielded CID estimates between 0.49 and 1.05 points, with a correlation-weighted average of 0.81 points.
Conclusion: This scoring model showed strong construct validity and internal consistency reliability when assessing medication adherence in OA. Future work should focus on confirming validity across a range of disease areas.
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