Journal of Patient-Reported Outcomes最新文献

{"title":"Mediating role of family and workplace support on health-related quality of life among self-reported young adult cancer survivors: a cross-sectional observational study.","authors":"Takafumi Soejima, Mari Kitao","doi":"10.1186/s41687-026-01120-2","DOIUrl":"10.1186/s41687-026-01120-2","url":null,"abstract":"<p><strong>Background: </strong>The influence of family and workplace support on different domains of health-related quality of life (HRQOL) remains unclear in optimizing psychosocial interventions to improve HRQOL for young adult cancer survivors. In this study, we aimed to clarify the mediating effects of family and workplace support on the association between cancer-related symptoms and each domain of HRQOL among young adults with a self-reported cancer diagnosis (self-reported young adult cancer survivors).</p><p><strong>Methodology: </strong>This cross-sectional observational study used an online survey conducted in Japan in January 2022. The survey was designed to assess demographic and clinical characteristics, physical fatigue (using Physical Fatigue subscale of the Cancer Fatigue Scale), depression (using Kessler-6), cognitive impairments (using Cognitive Functioning subscale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30), family support (using a subscale of the Multidimensional Scale of Perceived Social Support), workplace support (using a subscale of the New Brief Job Stress Questionnaire), and HRQOL (using the 12-Item Short-Form Health Survey). We conducted structural equation modeling (SEM) using data from 192 participants.</p><p><strong>Results: </strong>Of the 192 participants, 78% were female, 60% had undergone surgery, and 67% were permanent workers. Notably, the mean scores in the social domain of HRQOL were significantly lower than the national standard values in the Japanese population aged 20-39 years. The indirect effects of workplace support were significant for the association of cancer-related symptoms with mental (β = -0.07) and social (β = -0.06) domains of HRQOL. Similarly, the indirect effects of family support were significant for the association of cancer-related symptoms with physical (β = -0.06) and social (β = -0.05) domains of HRQOL.</p><p><strong>Conclusions: </strong>Family support mediated the association of cancer-related symptoms with physical and social QOL, whereas workplace support mediated the association of cancer-related symptoms with mental and social QOL. The social QOL among self-reported young adult cancer survivors was lower than that of the general Japanese population aged 20-39 years. Therefore, strategies targeting family and workplace support may be crucial for Japanese young adult cancer survivors in maintaining and improving their social QOL.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13486422/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148220002","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":"Evaluating disease burden in German AAV patients using the AAV-PRO: associations with disease activity, physical function, depression, fatigue and quality of life.","authors":"Miriam Jacobs, Tim Filla, Gamal Chehab, Ayla Stütz, Amelie Niesmann, Marie Celine von Saan, Jutta G Richter, Christina Düsing, Johanna Mucke, Nikolas Ruffer, Oliver Sander, Matthias Schneider, Michael Schmitz, Anna Kernder","doi":"10.1186/s41687-026-01116-y","DOIUrl":"10.1186/s41687-026-01116-y","url":null,"abstract":"<p><strong>Background: </strong>The disease-specific patient-reported outcome for ANCA-associated vasculitis (AAV-PRO) was developed by the Outcome Measures in Rheumatology (OMERACT) group. Its interpretation in routine clinical practice remains challenging due to limited evidence regarding the association with established clinical outcome measures.</p><p><strong>Methodology: </strong>We conducted a prospective cohort study of 70 AAV-patients who completed the AAV-PRO and the following additional questionnaires: Short Form-36 (SF-36), assessing health-related quality of life; Fatigue Severity Scale (FSS) measuring fatigue severity; Index zur Messung von Einschränkungen der Teilhabe (IMET), assessing restrictions in participation in everyday life; Funktionsfragebogen-Hannover (FFbH), evaluating abilities and limitations in daily activities; Patient Health Questionnaire-9 (PHQ-9), screening for depressive symptoms; and Life Orientation Test-Revised (LOT-R), assessing optimism and expectations. Physicians assessed disease activity, related damage and glucocorticoid side-effects using the Birmingham Vasculitis Activity Score (BVAS), vasculitis damage index (VDI) and glucocorticoid toxicity index (GTI).</p><p><strong>Results: </strong>70 patients with AAV participated in the study, including 45 patients with GPA; 64.3%, 16 with EGPA; 22.9%, and 9 with MPA; 12.8%. At study inclusion, the mean disease duration was 10.5 years (SD 7.9). Patients with active disease had higher AAV-PRO scores across all domains. We observed strong correlations between AAV-PRO subdomains and the following validated measures: \"Systemic symptoms\" with SF-36 physical function (r = -0.72, 95% CI -0.85 to -0.58) and FFbH (r = -0.88, 95% CI -0.56 to -0.97); \"Social and emotional impact\" with SF-36 social role functioning (r = -0.8, 95% CI -0.87 to -0.69), IMET (r = 0.7, 95% CI 0.55 to 0.81) and FFbH (r = -0.75, 95% CI -0.94 to -0.23); \"Concerns about the future\" with SF-36 social role functioning (r = -0.71, 95% CI -0.81 to -0.55) and FFbH (r = -0.77, 95% CI -0.94 to -0.27); \"Physical function\" with SF-36 physical function (r = -0.9, 95% CI -0.94 to -0.84) and IMET (r = 0.79, 95% CI 0.68 to 0.87).</p><p><strong>Conclusion: </strong>The German AAV-PRO captures patient-perceived disease burden, complementing traditional clinical outcome measures. Its multidimensional approach allows assessment of functional, psychosocial and symptom-related aspects of AAV, supporting its use in clinical practice.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13260533/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148220027","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":"Cross-cultural validation of the Dutch Vertigo Symptom Scale - Short Form: dimensionality, reliability and cultural differences in symptom reporting.","authors":"Anisa S Y Noordzij, Berend Terluin, Johannes C van der Wouden, Henriëtte E van der Horst, Rosie Essery, Lucy Yardley, Otto R Maarsingh, Vincent A van Vugt","doi":"10.1186/s41687-026-01109-x","DOIUrl":"10.1186/s41687-026-01109-x","url":null,"abstract":"<p><strong>Background: </strong>The Vertigo Symptom Scale - Short Form (VSS-SF) is a widely used questionnaire to measure vestibular symptoms such as dizziness and vertigo. Most cross-cultural validations focus only on translation and basic psychometrics, providing limited insight into cross-national comparability. This study aimed to (1) develop and validate a Dutch version of the VSS-SF, and (2) provide novel insights into cross-cultural differences in symptom reporting and the methodological robustness of the scale.</p><p><strong>Methodology: </strong>Following international guidelines, we translated and linguistically validated the Dutch VSS-SF. We then compared its dimensional structure, reliability, and differential item functioning (DIF) with the original British version, using bifactor modeling to test essential unidimensionality. We used data from patients aged 50 years and older with chronic vestibular symptoms who participated in British (n = 296) and Dutch (n = 322) randomized controlled trials.</p><p><strong>Results: </strong>The Dutch version was well understood. Psychometric evaluation supported essential unidimensionality in both versions (structural coefficient bias < 15%). Reliability was excellent (omega-total 0.920 Dutch; 0.956 British). DIF analysis revealed cultural differences: Dutch patients were less likely to report nausea/vomiting but more likely to report unsteadiness, even at the same symptom level. However, these differences had negligible impact on total scores.</p><p><strong>Conclusions: </strong>The Dutch VSS-SF is valid and reliable, with scores directly comparable to the British version. Beyond translation, this study shows how advanced psychometric methods reveal both the robustness of the VSS-SF and subtle cultural differences in symptom perception, strengthening its use in multinational research and clinical practice.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13481963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148220022","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":"Development and psychometric validation of the PERQOLATEUR questionnaire: an individualized self-report measure of the impact of chronic illness and treatment in clinical practice.","authors":"Jean-Benoit Hardouin, Djuly Pierre-Paul, Anne Le Rhun, Philippe Tessier, Marianne Bourdon, Leila Moret","doi":"10.1186/s41687-026-01102-4","DOIUrl":"10.1186/s41687-026-01102-4","url":null,"abstract":"<p><strong>Background: </strong>Quality of life is a key construct in healthcare, particularly in the concept of health-related quality of life (HRQoL). Existing questionnaires are widely used in research but remain underused in clinical practice, partly due to their length and lack of personalization. No self-administered HRQoL instrument currently combines rapid completion with results that are immediately interpretable by clinicians. This study aimed to develop and validate a concise, self-administered, French-language personalized HRQoL questionnaire.</p><p><strong>Methods: </strong>A multidisciplinary working group, including patients, designed and validated the PerQolateur questionnaire. The instrument comprises five sections: participants select five personally relevant themes from a predefined list of 12 and rate each for importance, well-being, and the impact of both their chronic condition and its treatments. Three scores were generated: Well-being, Health Problem Impact, and Treatment Impact. Psychometric evaluation included face, structural (confirmatory factor analysis), and convergent validity (correlations with SF-36 scores), as well as reliability (Cronbach's α and McDonald's ω).</p><p><strong>Results: </strong>A total of 535 participants (73% women; 27% with chronic illness; aged 18-90 years) completed the study. Most (81%) fully understood the questionnaire, and 96% completed it in under five minutes. The Well-being and Health Problem Impact scores showed satisfactory model fit and reliability (α/ω = 0.66-0.80), while the Treatment Impact score performed less well. The first two scores correlated moderately (r > 0.40) with relevant SF-36 dimensions.</p><p><strong>Conclusion: </strong>The PerQolateur is the first validated, personalized HRQoL tool in French, offering brevity, usability, and clinical relevance for patient-centered care.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13481634/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148206456","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":"Implementing custom PRO and NPS tools in private practice: balancing simplicity and clinical value in a retrospective study.","authors":"Paul Bonilla, Juan Pablo Flanagan, Anesu Murambadoro, Victoria Elizondo, Michael Sander","doi":"10.1186/s41687-026-01110-4","DOIUrl":"10.1186/s41687-026-01110-4","url":null,"abstract":"<p><strong>Background: </strong>The authors describe the development of a custom survey centered around the Three C's and Net Promoter Scores in a high-volume surgical private practice with limited resources and no research coordinator. This paper aims to examine whether an abbreviated survey can serve as a practical alternative to lengthy validated PROMs in tracking post-surgical recovery outcomes in a private practice setting.</p><p><strong>Methods: </strong>A retrospective, de-identified analysis was conducted on prospectively collected patient-reported outcome surveys administered via email preoperatively and 120-days postoperatively. Of 2,908 surveys administered, 101 patients undergoing four high-volume procedures (CTR, meniscectomy, TKR, hernia) with matched pre- and post-operative responses were included. Paired t-tests with Shapiro-Wilk normality testing were performed in R (version 4.3.2) at α = 0.001.</p><p><strong>Results: </strong>In total, 2,908 surveys were administered between 2021 and 2024 with 719 pre-surgery responses collected and 439 responses to both pre- and post-surgery surveys. The highest volume cases were selected for analysis based on their high surgical volume (> 8 cases), clinical relevance to orthopedics, and their frequent association with post operative recovery function. Surgical patients undergoing Carpal Tunnel Release (CTR) (t = 4.04, p < 0.001), Meniscectomy (t = 3.46, p < 0.001), Total Knee Replacement (TKR) (t = 4.15, p < 0.001), and Total Hip Replacement (THR) (t = 4.71, p < 0.001) demonstrated significant improvements in post-surgical numerical pain score. Similar results were observed in functionality and disruptive stress scores. Researchers observed a calculated NPS of 88.2 of which 400 were promoters, 26 were passives, and 13 were detractors.</p><p><strong>Conclusion: </strong>The authors present this work as an initial signal study demonstrating that a brief and self-administered survey can capture statistically significant improvements in pain, functional difficulty, and psychological stress in a private practice setting with limited research infrastructure. While NPS and work metrics should not be used alone as a gauge of outcomes, they hold significant utility in conjunction with other patient reported outcomes. Reporting requirements by the Center for Medicare and Medicaid Services (CMS) require hospitals to collect pre surgery and one year post surgery (9-15 months) HOOS JR and KOOS JR scores for total joint replacement surgeries, with public reporting set for 2027 and reimbursement effects in 2028. These requirements underscore the need for streamlined solutions. As value-based care becomes a priority, practical strategies are needed to reduce the burden on providers and patients [1].</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13478045/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148206495","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":"Patient-reported tolerability of endoscopic retrograde cholangiopancreatography using conscious sedation in patients with underlying depression and anxiety.","authors":"Alejandra Tepox-Padrón, Renée El-Gabalawy, Shane Cartwright, Sangmin Lee, Priyanka Gill, Pooja Mishra, Jessica Hammal, Angelica Rivas, Jonathan Besney, Sunil Samnani, Howard Guo, Getanshu Malik, Mehul Gupta, Catherine Tsai, Arjun Kundra, Robert J Hilsden, Nauzer Forbes","doi":"10.1186/s41687-026-01094-1","DOIUrl":"10.1186/s41687-026-01094-1","url":null,"abstract":"<p><strong>Background: </strong>Endoscopic retrograde cholangiopancreatography (ERCP) is often performed under conscious sedation, which may increase pain and dissatisfaction. Mental health conditions may influence patient-reported experience measures (PREMs), including tolerability. This study explores the association between pre-existing anxiety and/or depression and ERCP tolerability using the validated Patient-Reported Scale for Tolerability of Endoscopic Procedure (PRO-STEP) to address this.</p><p><strong>Methodology: </strong>We performed a retrospective analysis of prospectively maintained data from an international observational cohort of adult patients undergoing ERCP. Pre-existing anxiety/depression were identified prior to the index procedure and the PRO-STEP questionnaire was used to evaluate peri- and post-procedure outcomes. Univariable and multivariable logistic regressions examined the associations between pre-operative anxiety/depression and peri- and post-operative tolerability and patient-reported health outcomes.</p><p><strong>Results: </strong>Among 3,714 participants, 13% had anxiety and/or depression. The mean age of participants in the control group was 62.3 ± 17.4 years, and 49.9% were female, while in the group with depression and/or anxiety, the mean age was 60.0 ± 16.4 years and 68.3% were female (p < 0.001). Common bile duct stones were the most common indications for ERCP in both groups (41.6% of controls and 42.4% of the depression/anxiety group, p = 0.10). Patients in the depression/anxiety group reported higher rates of opioid use (23.4% vs. 13.8%, p < 0.001), cannabis use (22.8% vs. 10.5%, p < 0.001), and heavy alcohol consumption (5.0% vs. 3.6%, p < 0.001). There were no statistically significant differences between groups in terms of disposition, comorbidities, or procedural parameters. Underlying anxiety and/or depression was significantly associated with increased intra-procedural awareness score > 3 (odds ratio, OR, 1.55, 95% CI 1.23-1.95) and discomfort score > 6 (OR 1.73, 95% CI 1.23-2.43) and with post-procedural scores > 3 for abdominal pain (OR 1.44, 95% CI 1.08-1.93), nausea (OR 2.03, 95% CI 1.43-2.89), and distension (OR 2.12, 95% CI 1.29-3.50).</p><p><strong>Conclusions: </strong>Patients with pre-existing anxiety and/or depression reported significantly worse tolerability of ERCP under conscious sedation. Although further research is needed in this area, staff in gastrointestinal endoscopy units should consider strategies aimed at improving tolerability and, consequently, satisfaction among vulnerable populations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13473044/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148200363","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":"Incongruent symptom perceptions and its associations with negative mood, intimate relationship and quality of life in colorectal cancer dyads: a dyadic analysis.","authors":"Xia Wu, Roger W Chan, Hongge Tang, Yiming Li","doi":"10.1186/s41687-026-01090-5","DOIUrl":"10.1186/s41687-026-01090-5","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Purpose: &lt;/strong&gt;The primary objective of this study was to explore the existence and identify predictors of incongruent perceptions of pain, fatigue, and sleep disturbance, and to examine their associations with negative mood, intimate relationship, and quality of life in colorectal cancer patient- caregiver dyads.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;271 colorectal cancer dyads completed questionnaires designed to assess a range of outcomes, including patient symptoms (pain, fatigue, sleep disturbance), negative mood, intimate relationship, and quality of life. Pearson's correlation, multiple linear regression analysis and structural equation modeling were used to analyze the data.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;There were significant disparities in incongruent perceptions of sleep disturbance between patients and caregivers (t=-3.241, p &lt; 0.001). For incongruent sleep disturbance, regression analysis showed patient education level (B=-1.014, p = 0.001) and caregiver education level (B=-1.140, p &lt; 0.001) demonstrated significant negative associations. Longer patient diagnosis duration (B=-1.876, p = 0.010) was negatively associated. Caregiver religious affiliation (B=-1.611, p = 0.027) and marital status (B= -3.097, p = 0.001) showed negative associations. Patient gender (B= 1.361, p = 0.037) and caregiver gender (B = 1.803, p = 0.004) exhibited positive associations. Dyadic relationship type (B = 1.568, p = 0.043) was positively associated. The analysis revealed that incongruent perceptions of sleep disturbance exhibited a significant correlation with the quality of life and negative mood of both individuals within colorectal cancer patient-caregiver dyads. The model fit estimates were as follows: χ2/df = 1.570, GFI = 0.967, CFI = 0.957, IFI = 0.922, RMSEA = 0.036, SRMR = 0.053. Pathway analysis demonstrated that incongruent perceptions of sleep disturbance exerted a significantly direct effect on the quality of life of both individuals in colorectal cancer patient-caregiver dyads, albeit in opposite directions (B=-0.238, p &lt; 0.001; B = 0.358, p &lt; 0.001, respectively). Furthermore, the analysis revealed an actor-partner mediating effect of incongruent perceptions of sleep disturbance, negative mood, intimate relationship, and quality of life.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The findings of the present study indicated that incongruent perceptions of sleep disturbance were associated with negative mood, low intimate relationship satisfaction, and low quality of life. The individual attributes of patients (gender, educational level and time since diagnosis) and caregivers (gender, educational level, religious beliefs and marital status), as well as dyadic factors such as relationship, could predict patient-caregiver concordance on assessing patients' symptoms. It is recommended that healthcare providers should reinforce patient-caregiver dyadic symptom education to reduce incongruent perceptions of sleep disturbance in colorectal cance","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148195188","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":"Critical appraisal of patient-reported and clinician-reported outcome measures assessing functional outcomes in lower extremity bone sarcoma patients-a COSMIN-based systematic review.","authors":"Kiki J Blom, Leonie G Tigelaar, Willem P Bekkering, Jos A M Bramer, Hendrik W B Schreuder, Sherron Furtado, Emanuela Palmerini, Nathalie Gaspar, Sandra J Strauss, Michiel A J Van de Sande, Heleen Maurice-Stam, Johannes H M Merks, Lianne M Haveman","doi":"10.1186/s41687-026-01099-w","DOIUrl":"10.1186/s41687-026-01099-w","url":null,"abstract":"<p><strong>Purpose: </strong>Local therapy for bone sarcoma often significantly impacts patients' physical abilities and participation in daily life, which underscores the need for accurate assessment of these outcomes to guide optimal care. This study aims to 1) evaluate the measurement properties of eight patient- and clinician-reported outcome measures identified in a recent systematic review (2024) as being used more than once in this population, and 2) recommend the most suitable instruments for evaluation in clinic and research.</p><p><strong>Methods: </strong>We searched MEDLINE and Embase in July 2024 for studies assessing the development and/or measurement properties of the original version of the Baeck equestionnaire, Functional Mobility Assessment, Karnofsky Performance Status, Mankin score, MusculoSkeletal Tumor Society 1987 and 1993-Lower extremity (LE)scores, Reintegration to Normal Living (RNL) Index and Toronto Extremity Salvage Score (TESS) - LE. Full text availability was required. Measurement instruments were evaluated using COSMIN guidelines (July 2024 - January 2025).</p><p><strong>Results: </strong>Seventy-three articles evaluating measurement properties of one of the eight instruments were included. The Baecke questionnaire, RNL Index and TESS-LE had clearly defined constructs of which only the RNL Index and TESS-LE demonstrated sufficient overall content validity (low- and moderate-quality evidence). The remaining instruments lacked clear construct definitions, resulting in indeterminate or insufficient content validity, and therefore cannot be recommended for use. Structural validity of the TESS-LE was inconsistent leading to indeterminate internal consistency, currently preventing its recommendation. Additionally, the evidence supporting sufficient measurement properties of the RNL Index was too limited to justify its use.</p><p><strong>Conclusion: </strong>A clearly defined construct is the cornerstone of a measurement instrument and was lacking in most cases. The TESS-LE and RNL Index show promise due to their sufficient content validity, but require further refinement before they can be recommended as standard instruments to assess physical abilities and participation in daily life in bone sarcoma patients. Advancing measurement of these outcomes requires comprehensive validation and refinement of existing instruments to overcome their current limitations, or the development of new, reliable, and valid instruments tailored to this population.</p><p><strong>Registration: </strong>Study protocol registration in the PROSPERO database:CRD42022353668.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13469031/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148177051","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":"Maintaining validity of neuropathic pain screening tools over time: challenges and opportunities.","authors":"Giulia Mesaroli, Anthony V Perruccio, Kristen M Davidge, Jennifer Stinson","doi":"10.1186/s41687-026-01086-1","DOIUrl":"10.1186/s41687-026-01086-1","url":null,"abstract":"<p><strong>Background: </strong>Significant efforts are made to validate screening tools at the time of development. This paper outlines the challenge in maintaining validity of neuropathic pain (NP) screening tools alongside advances in how NP condition is defined, diagnosed, and classified. To illustrate this, the validity of the Leeds Assessment of Neuropathic Symptoms and Signs (LANSS) was critiqued in relation to advances in knowledge of NP.</p><p><strong>Methods: </strong>This narrative review used a systematic literature search to identify content validity (including tool development) and criterion validity studies of the LANSS. Content validity (including face validity) was critiqued using a subset of COSMIN standards. Criterion validity was critiqued using a subset of QUADAS-2 standards.</p><p><strong>Results: </strong>Twelve papers were identified (nine pertain to criterion validity and three pertain to both content and criterion validity). Content validity studies with patients provided limited evidence of the tool's relevance and comprehensibility. At face value, two items may no longer be relevant to NP. Six of 12 criterion validity studies may no longer be applicable (included patients who would no longer be classified with NP and/or the diagnostic assessment is outdated); six remaining studies reported variable results (sensitivity 22-86%, specificity 37-100%).</p><p><strong>Conclusion: </strong>Additional content validity testing of the LANSS is warranted to determine if the tool is relevant and comprehensible, and to determine whether revisions are needed to reflect the current state of knowledge of NP. Screening tool validity is not static over time; validation is a continuous process that may include tool revision.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13457814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148164920","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":"Patient-reported outcomes and health-related quality of life in individuals living with, through, and beyond cancer in Sweden: a cross-sectional study.","authors":"Sixten Borg, Linn Rosell, Lars Garpenhag, Susanna Calling, Anna-Maria Larsson","doi":"10.1186/s41687-026-01115-z","DOIUrl":"10.1186/s41687-026-01115-z","url":null,"abstract":"<p><strong>Background: </strong>The use of patient-reported outcome measures (PROM) can be beneficial in several ways. However, presentations of PROM data from individuals living with, through, or beyond cancer are scarce in the existing scientific literature, and challenges in presenting and interpreting PROM data may be an explanation. Our overall aim was to describe aspects of wellbeing in individuals living with current or previous cancer, 1-2 and 5-6 years after diagnosis. We also aimed to identify vulnerable subgroups of individuals and to facilitate the interpretation of PROM data by combining different presentation forms.</p><p><strong>Methodology: </strong>Adults in the Southern healthcare region in Sweden with invasive breast, prostate, lung, or colorectal cancer diagnosed 1-2 or 5-6 years ago were invited to a survey using the European Organisation for Research and Treatment of Cancer (EORTC) instrument QLQ-C30 (C30). We analyzed subgroups of respondents using scale scores, clinically anchored problem ranges, and Quality-Adjusted Life Years weights. Moreover, we compared our C30 scores to Swedish general population reference values, EORTC diagnose-specific reference values, and other similar cancer studies.</p><p><strong>Results: </strong>A total of 2,131 individuals responded (26% response rate). The results demonstrate consistent differences in C30 scale scores, where respondents with several comorbidities, younger age, and lung and colorectal cancer diagnoses had poorer scores. Respondents within problem ranges were consistent with the results on scale scores. Quality-Adjusted Life Years weights displayed a generally similar pattern. Our respondents showed no differences on C30 scales compared to the Swedish general population and recent similar studies. There were some differences compared to diagnose-specific reference values and some older similar studies.</p><p><strong>Conclusions: </strong>Aspects of wellbeing varied between subgroups, suggesting potential to develop care for certain patient groups with poorer scores, i.e. the younger age groups and in those with several comorbidities, and individuals diagnosed with lung cancer and colorectal cancer. However, individuals who lived 1-2 or 5-6 years after cancer diagnosis experienced no difference in wellbeing than published results from the Swedish general population. Our different ways of presenting PROM show similar results overall but serve to elucidate different aspects which may contribute to the practice of presenting and interpreting PROM data.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13241336/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148151743","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}