Journal of Patient-Reported Outcomes最新文献

{"title":"Patient perception of bowel urgency and remission in moderately to severely active Crohn's disease or ulcerative colitis: a qualitative study.","authors":"Theresa Hunter Gibble, Larissa Stassek, Gale Harding, Marissa Stefan, Tsion Fikre, Alison Potts Bleakman, Richard Moses, Marla Dubinsky","doi":"10.1186/s41687-024-00800-1","DOIUrl":"10.1186/s41687-024-00800-1","url":null,"abstract":"<p><strong>Background: </strong>Bowel urgency, the sudden and immediate need to have a bowel movement, is common in patients with ulcerative colitis (UC) and Crohn's disease (CD). While its impact in UC is well established, less is known about its importance in CD. Further, what level of bowel urgency control patients with UC or CD would consider to be acceptable or in remission has not been established. This qualitative study aimed to understand perceptions of bowel urgency and remission in these patients.</p><p><strong>Methods: </strong>Semi-structured combined concept elicitation and cognitive interviews were conducted to explore how adults with moderate-to-severe UC or CD and current or recent bowel urgency think about the concept of bowel urgency and its remission. The Urgency Numeric Rating Scale (UNRS) was used to examine different levels of bowel urgency severity and to investigate what level of bowel urgency patients would consider as representing remission.</p><p><strong>Results: </strong>Forty adults (n = 19 UC, n = 21 CD) recruited from six US sites completed the study. Sociodemographic and clinical characteristics were similar in both groups. Both groups reported impacts of bowel urgency on physical, social, professional, and emotional aspects of their lives. Most participants (n = 15 UC, n = 18 CD) reported having experienced one or more incidents of urgency-related fecal incontinence. Most participants considered remission to be a state with a normal or reduced number of bowel movements and no or less frequent bowel urgency, and they noted that remission would increase their ability to engage in daily activities without fear of fecal incontinence. Participants were able to map different levels of severity of bowel urgency to UNRS score ranges (scale: 0-10), and they indicated that a mean UNRS score of 5 (UC) or 4 (CD) would be the highest point on the NRS at which they would still consider their bowel urgency to be in remission.</p><p><strong>Conclusions: </strong>Bowel urgency is an important issue for patients with either moderate-to-severe UC or CD, and its remission would improve their lives. Further, these patients may still consider bowel urgency to be in remission even at UNRS scores as high as 4 or 5.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"130"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11557785/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629823","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}

{"title":"Early insights from the routine use of patient reported outcome measures in elective hip and knee arthroplasty at a public teaching hospital in South Australia.","authors":"Samuel P Goldsmith, Paul N Karayiannis, Louisa M Edwards, Barbara Toson, Freeda D'Mello, Emma Jackman, Christopher John Wilson, Anthony Samson","doi":"10.1186/s41687-024-00807-8","DOIUrl":"10.1186/s41687-024-00807-8","url":null,"abstract":"<p><strong>Introduction: </strong>For advanced osteoarthritis of the knee and hip, the most clinically effective treatment remains total-knee arthroplasty (TKA) and total-hip arthroplasty (THA). Success of these surgeries have traditionally been appraised by economic and volume-based measures. There has been a shift towards the use of patient reported outcome measures (PROMs) to quantify success and guide treatment. The present study provides analysis of three PROMS which have been validated for use in orthopaedic settings; the Oxford Knee Score (OKS), Oxford Hip Score (OHS), Forgotten Joint Score (FJS), and the EuroQol-Visual Analogue Scale (EQ-VAS) - a non-disease specific measure of health. PROMs were completed pre-operatively, 6-weeks, and 1-year after elective TKA and THA undertaken in 2018 in a public teaching hospital in South Australia. Post-operative satisfaction/dissatisfaction was measured using a 5-point Likert scale and was collected at the same 6-week and 1-year points.</p><p><strong>Results: </strong>PROMs were collected from 285 eligible elective knee-arthroplasty, and 205 elective hip-arthroplasty patients. There was significant average improvement, greater than minimal clinical important differences between pre-operative and 1-year post-operative scores for all three PROMs tools. Inter-PROM correlation was strongest between FJS and OKS at 1-year post TKA (r_s = 0.722), and between FJS and OHS in post-THA at the same interval (r_s = 0.609). TKA patients with higher pre-surgical 10-year mortality were weakly associated with lower pre-operative OKS score (r_s = 0.169). BMI was weakly negatively associated with pre-operative and 6-week post-operative EQ-VAS scores (r_s = -0.291 and r_s = -0.149 respectively). Post-TKA satisfaction was 77.2% at 1-year, and THA 88.5% at the same interval.</p><p><strong>Conclusion: </strong>This study provides an early insight from the use of the OKS, OHS, the EQ-VAS and the FJS as PROMs in primary TKA and THA at our centre. All PROMs demonstrate significant increase (improvement) at both 6-week and 1-year post-operative intervals, relative to pre-operative scores. The FJS demonstrated good sensitivity. Pre-existing co-morbidities do not appear to have any significant relation with post-operative PROMs collected in this study.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"131"},"PeriodicalIF":2.4,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11557799/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629808","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}

{"title":"Treatment decision-making factors among patients with cervical myelopathy: a discrete-choice experiment.","authors":"Mohamed Sarraj, Meerab Majeed, Mohammad Zarrabian, Jason Busse, Mohit Bhandari, Daipayan Guha, Markian Pahuta","doi":"10.1186/s41687-024-00810-z","DOIUrl":"10.1186/s41687-024-00810-z","url":null,"abstract":"<p><strong>Background: </strong>Degenerative Cervical Myelopathy is a debilitating condition and current recommendations encourage shared decision-making between surgeons and patients. However, there is limited data on patients' values and preferences for surgical decision making. This study aimed to quantify and compare the relative importance of neurologic function, risk of future surgery, and complications to patients with cervical stenosis.</p><p><strong>Methods: </strong>Patients with cervical stenosis presenting for surgical evaluation, or post-operative cervical decompression patients, were recruited to participate. Demographic information including modified Japanese Orthopedic Association (mJOA) score, type of surgery, and complications were recorded and anonymized to study ID. Patients then completed an online discrete-choice experiment survey. In a series of 10 questions, respondents chose between two hypothetical health states defined in terms of five attributes, or \"decision factors\": (i) upper extremity neurologic function, (ii) lower extremity neurologic function, (iii) risk of cervical spine surgery, (iv) dysphagia, and (v) C5 palsy. Participants were asked to choose which 'life' they preferred, and a regression model was used to quantify the importance of each decision factor.</p><p><strong>Results: </strong>We report three key findings that can aid clinicians in shared decision-making conversations: (i) all patients regard lower extremity neurologic function as the most important decision factor, (ii) dysphagia, a complication, and upper extremity neurologic function are equally important, and (iii) patients who have undergone surgery weigh neurologic function as less important, and complications as more important than patients who have not undergone surgery.</p><p><strong>Conclusions: </strong>Patient preferences for management of degenerative cervical myelopathy are influenced by several considerations including the experience of surgery itself. Communication of benefits and harms associated with surgical and conservative care can optimize shared decision making. Further research should be conducted to evaluate for decisional regret and the impact of complications to inform treatment conversations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"129"},"PeriodicalIF":2.4,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11554993/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629853","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}

{"title":"Experience of Service Questionnaire (ESQ) in children and adolescents: factor structure, reliability, validity, item parameters and interpretability of the parent version for practical use in Greece.","authors":"Konstantinos Kotsis, Andromachi Mitropoulou, Alexandra Tzotzi, Lauro Estivalete Marchionatti, Mauricio Scopel Hoffmann, Julia Luiza Schafer, Caio B Casella, André Simioni, Katerina Papanikolaou, Maria Basta, Aspasia Serdari, Anastasia Koumoula, Giovanni Abrahão Salum","doi":"10.1186/s41687-024-00798-6","DOIUrl":"10.1186/s41687-024-00798-6","url":null,"abstract":"<p><strong>Background: </strong>Health systems need tools to assess patient's experience of service, but existing tools lack reliability and validity assessment. Our aim is to investigate the factor structure, reliability, validity, item parameters and interpretability of the parent version of the Experience of Service Questionnaire (ESQ) for practical use in Greece.</p><p><strong>Methods: </strong>A total of 265 caregivers that were using mental health services in Greece participated in this study as part of the Nationwide cross-sectional survey from the Child and Adolescent Mental Health Initiative (CAMHI). Confirmatory Factor Analysis was used to test factor structure. Reliability of all models were measured with omega coefficients. Tobit regression analysis was used to test for convergent and discriminant validity with specifically designed questions. Item parameters were assessed via Item Response Theory. Interpretability was assessed by means of IRT-based scores.</p><p><strong>Results: </strong>We found that ESQ is best represented and scored as a unidimensional construct, given potential subscales would not have enough reliability apart from a general factor. Convergent and discriminant validity was demonstrated, as caregivers who perceived that their child benefited from the received mental health care had 6.50 higher summed scores (SMD = 1.14, p < 0.001); while those who believed that their child needed additional help had 5.08 lower summed scores on the ESQ (SMD = -0.89, p < 0.001). Average z-scores provided five meaningful categories of services, in terms of user satisfaction, compared to the national average.</p><p><strong>Conclusions: </strong>Our study presents evidence for the reliability and validity of the ESQ and provides recommendations for its practical use in Greece. ESQ can be used to measure experience of service and might help drive improvements in service delivery in the Greek mental health sector.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"128"},"PeriodicalIF":2.4,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11549257/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142606883","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}

{"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":"8 1","pages":"127"},"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}

{"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":"8 1","pages":"125"},"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}

{"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":"8 1","pages":"126"},"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}

{"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":"8 1","pages":"124"},"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}

{"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":"8 1","pages":"123"},"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}

{"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":"8 1","pages":"122"},"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}