Pub Date : 2025-11-25DOI: 10.1186/s41687-025-00961-7
Tal Hefetz, Firas Kassem, Ameen Biadsee, Thomas Hummel, Ilan Blau, Dafna Gershnabel-Milk
Objective: To translate and validate Hebrew versions of two patient-reported outcome measure questionnaires: the Self-Reported Mini Olfactory Questionnaire (Self-MOQ) and the Brief Questionnaire of Olfactory Disorders (Brief-QOD).
Methods: A forward-backward translation process was conducted for both questionnaires. All participants rated their sense of smell using a general Visual Analog Scale (VAS) ranging from 0 (no dysfunction) to 10 (severe dysfunction). The patient group completed the questionnaires and the SNOT-22 questionnaire once. A control group of healthy participants completed the questionnaires twice to evaluate test-retest reliability. Subsets of both groups took the Sniffin' Sticks test.
Results: The translation process resulted in Hebrew versions deemed clear and culturally appropriate. A total of 91 individuals were enrolled in the control group and 62 in the patient group. The Hebrew versions of the Self-MOQ and Brief-QOD demonstrated high internal consistency (Cronbach's α of 0.79-0.94 in the full sample) and overall test-retest reliability. The patient group had higher scores than the control group across all measures (p < 0.001). Logistic regression indicated that the Self-MOQ was the strongest predictor of group membership, while the Brief-QOD QOL and Visual Analog Scale components also significantly contributed. Receiver operating characteristic curve analysis identified an optimal Self-MOQ cutoff score of ≥ 2 for distinguishing patients from controls, with excellent accuracy (AUC = 0.97).
Conclusions: The Hebrew Self-MOQ and Brief-QOD are reliable and valid tools for assessing olfactory dysfunction in the Hebrew-speaking population. Future research should evaluate questionnaire results after clinical interventions.
{"title":"Validity and reliability of the Hebrew version of the Brief Questionnaire of Olfactory Disorders (Brief-QOD) and the Self-Reported Mini Olfactory Questionnaire (Self-MOQ).","authors":"Tal Hefetz, Firas Kassem, Ameen Biadsee, Thomas Hummel, Ilan Blau, Dafna Gershnabel-Milk","doi":"10.1186/s41687-025-00961-7","DOIUrl":"10.1186/s41687-025-00961-7","url":null,"abstract":"<p><strong>Objective: </strong>To translate and validate Hebrew versions of two patient-reported outcome measure questionnaires: the Self-Reported Mini Olfactory Questionnaire (Self-MOQ) and the Brief Questionnaire of Olfactory Disorders (Brief-QOD).</p><p><strong>Methods: </strong>A forward-backward translation process was conducted for both questionnaires. All participants rated their sense of smell using a general Visual Analog Scale (VAS) ranging from 0 (no dysfunction) to 10 (severe dysfunction). The patient group completed the questionnaires and the SNOT-22 questionnaire once. A control group of healthy participants completed the questionnaires twice to evaluate test-retest reliability. Subsets of both groups took the Sniffin' Sticks test.</p><p><strong>Results: </strong>The translation process resulted in Hebrew versions deemed clear and culturally appropriate. A total of 91 individuals were enrolled in the control group and 62 in the patient group. The Hebrew versions of the Self-MOQ and Brief-QOD demonstrated high internal consistency (Cronbach's α of 0.79-0.94 in the full sample) and overall test-retest reliability. The patient group had higher scores than the control group across all measures (p < 0.001). Logistic regression indicated that the Self-MOQ was the strongest predictor of group membership, while the Brief-QOD QOL and Visual Analog Scale components also significantly contributed. Receiver operating characteristic curve analysis identified an optimal Self-MOQ cutoff score of ≥ 2 for distinguishing patients from controls, with excellent accuracy (AUC = 0.97).</p><p><strong>Conclusions: </strong>The Hebrew Self-MOQ and Brief-QOD are reliable and valid tools for assessing olfactory dysfunction in the Hebrew-speaking population. Future research should evaluate questionnaire results after clinical interventions.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"135"},"PeriodicalIF":2.9,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12647470/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145606383","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 : 2025-11-25DOI: 10.1186/s41687-025-00971-5
Abdulrahman Alotaibi, Seon Hahn Kim, Atyaf Alzahrani, Essa Alazmi, Mohammed Musslem, Nada Alharbi, Alaaeldin Darewish, Maha Eltaher, Sakher Abdullah, Shamel Soaida, Tarek Mohammed
Background: Comprehensive research on the specific factors affecting the quality of life (QOL) of patients with colorectal cancer (CRC) is lacking. We investigated patient factors affecting QOL in this population.
Methodology: We conducted a cross-sectional study at Dr. Suliman Fakeeh Hospital, a private tertiary center in Jeddah City, KSA. We used the validated Arabic versions of the Cancer Quality of Life Questionnaire-30 (QLQ-30) and Colorectal Cancer Quality of Life Questionnaire-29 (QLQ-CR29) in patients with CRC. We used a generalized linear model to analyze the data. Significant linear correlations between functional and symptom scores and 11 factors, including age, sex, tumor site and stage, comorbidities, surgery type/approach, leaks, stoma, and neoadjuvant or adjuvant therapy, were detected.
Results: A total of 104 participants answered the survey. The mean global health score was 72.43 (95% confidence interval [CI] 68.18-76.52). Cognitive and physical function scored highest and lowest on the QLQ-30, with a mean of 76.92 (95% CI 71.47-81.73) and 24.92 (95% CI 65.57-74.61), respectively. The worst symptom was insomnia, with a mean of 42.30 (95% CI 36.21-48.71). The most distressing symptoms on the QLQ-CR29 were stoma embarrassment and bloating, with a mean of 41.34 (95% CI 24.67-58.01). Tumor stage and stoma were the two most significant factors for predicting poor QOL. The factors influencing impotence and male libido included age, tumor stage, comorbidities, and the use of chemoradiotherapy.
Conclusions: A one-unit increase in tumor stage was correlated with a 4.88-unit decrease in the global health status score, whereas a stoma was linked to a 22-fold reduction in social function scores. Advanced tumor stage and the presence of a stoma significantly affected patients' functional status and symptoms.
背景:目前对影响结直肠癌患者生活质量(QOL)的具体因素缺乏全面的研究。我们调查了影响该人群生活质量的患者因素。方法:我们在沙特阿拉伯吉达市的一家私立三级中心——Suliman Fakeeh医生医院进行了一项横断面研究。我们在结直肠癌患者中使用了经过验证的阿拉伯语版本的癌症生活质量问卷-30 (QLQ-30)和结直肠癌生活质量问卷-29 (QLQ-CR29)。我们使用广义线性模型来分析数据。功能和症状评分与年龄、性别、肿瘤部位和分期、合并症、手术类型/入路、渗漏、造口、新辅助或辅助治疗等11个因素之间存在显著的线性相关。结果:共有104名参与者回答了调查。整体平均健康评分为72.43分(95%可信区间[CI] 68.18-76.52)。认知和身体功能在QLQ-30上得分最高和最低,平均分别为76.92 (95% CI 71.47-81.73)和24.92 (95% CI 65.57-74.61)。最严重的症状是失眠,平均为42.30 (95% CI 36.21-48.71)。QLQ-CR29患者最苦恼的症状是造口尴尬和肿胀,平均为41.34 (95% CI 24.67-58.01)。肿瘤分期和造口是预测不良生活质量的两个最重要因素。影响阳痿和男性性欲的因素包括年龄、肿瘤分期、合并症和放化疗的使用。结论:肿瘤分期增加1个单位与整体健康状况评分降低4.88个单位相关,而造口与社会功能评分降低22倍相关。肿瘤分期和造口的存在显著影响患者的功能状态和症状。
{"title":"Predictors of impaired quality of life among colorectal cancer survivors: a cross-sectional study.","authors":"Abdulrahman Alotaibi, Seon Hahn Kim, Atyaf Alzahrani, Essa Alazmi, Mohammed Musslem, Nada Alharbi, Alaaeldin Darewish, Maha Eltaher, Sakher Abdullah, Shamel Soaida, Tarek Mohammed","doi":"10.1186/s41687-025-00971-5","DOIUrl":"10.1186/s41687-025-00971-5","url":null,"abstract":"<p><strong>Background: </strong>Comprehensive research on the specific factors affecting the quality of life (QOL) of patients with colorectal cancer (CRC) is lacking. We investigated patient factors affecting QOL in this population.</p><p><strong>Methodology: </strong>We conducted a cross-sectional study at Dr. Suliman Fakeeh Hospital, a private tertiary center in Jeddah City, KSA. We used the validated Arabic versions of the Cancer Quality of Life Questionnaire-30 (QLQ-30) and Colorectal Cancer Quality of Life Questionnaire-29 (QLQ-CR29) in patients with CRC. We used a generalized linear model to analyze the data. Significant linear correlations between functional and symptom scores and 11 factors, including age, sex, tumor site and stage, comorbidities, surgery type/approach, leaks, stoma, and neoadjuvant or adjuvant therapy, were detected.</p><p><strong>Results: </strong>A total of 104 participants answered the survey. The mean global health score was 72.43 (95% confidence interval [CI] 68.18-76.52). Cognitive and physical function scored highest and lowest on the QLQ-30, with a mean of 76.92 (95% CI 71.47-81.73) and 24.92 (95% CI 65.57-74.61), respectively. The worst symptom was insomnia, with a mean of 42.30 (95% CI 36.21-48.71). The most distressing symptoms on the QLQ-CR29 were stoma embarrassment and bloating, with a mean of 41.34 (95% CI 24.67-58.01). Tumor stage and stoma were the two most significant factors for predicting poor QOL. The factors influencing impotence and male libido included age, tumor stage, comorbidities, and the use of chemoradiotherapy.</p><p><strong>Conclusions: </strong>A one-unit increase in tumor stage was correlated with a 4.88-unit decrease in the global health status score, whereas a stoma was linked to a 22-fold reduction in social function scores. Advanced tumor stage and the presence of a stoma significantly affected patients' functional status and symptoms.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"136"},"PeriodicalIF":2.9,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12647477/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145606295","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 : 2025-11-25DOI: 10.1186/s41687-025-00974-2
Chris Azar, Cristina Barboi, Anthony Perkins, Damaris Ortiz, Ben L Zarzaur, Abdelfattah Alhader, Malaz A Boustani
{"title":"Older injured adults reported sleep disturbances: a cross-sectional study.","authors":"Chris Azar, Cristina Barboi, Anthony Perkins, Damaris Ortiz, Ben L Zarzaur, Abdelfattah Alhader, Malaz A Boustani","doi":"10.1186/s41687-025-00974-2","DOIUrl":"10.1186/s41687-025-00974-2","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":" ","pages":"1"},"PeriodicalIF":2.9,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12764724/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145597270","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 : 2025-11-20DOI: 10.1186/s41687-025-00945-7
Daniel Williamson, Julia Vishnevetsky, Masakazu Ando, Yanqing Xu, Xiaolan Ye, Jessica L Abel
{"title":"Psychometric evaluation of a pediatric functional constipation symptom diary using randomized phase 3 clinical trial data.","authors":"Daniel Williamson, Julia Vishnevetsky, Masakazu Ando, Yanqing Xu, Xiaolan Ye, Jessica L Abel","doi":"10.1186/s41687-025-00945-7","DOIUrl":"10.1186/s41687-025-00945-7","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"134"},"PeriodicalIF":2.9,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12635004/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145565783","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 : 2025-11-18DOI: 10.1186/s41687-025-00960-8
E P J van Munster, A B M Schilderman, R M A van Nispen, A A J Roelofs, A M Bootsma, H P A van der Aa
{"title":"Exploring patient-reported outcomes to assess progress in inpatient low vision rehabilitation.","authors":"E P J van Munster, A B M Schilderman, R M A van Nispen, A A J Roelofs, A M Bootsma, H P A van der Aa","doi":"10.1186/s41687-025-00960-8","DOIUrl":"10.1186/s41687-025-00960-8","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"133"},"PeriodicalIF":2.9,"publicationDate":"2025-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12627308/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145543197","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 : 2025-11-14DOI: 10.1186/s41687-025-00967-1
Agnes Wilhelm, Jessie Janssen, Malena Teufelhart, Kaylena Ehgoetz Martens, Alice Nieuwboer, Peter Augat
{"title":"German translation of the Characterizing Freezing of gait questionnaire: implementation of the TRAPD process.","authors":"Agnes Wilhelm, Jessie Janssen, Malena Teufelhart, Kaylena Ehgoetz Martens, Alice Nieuwboer, Peter Augat","doi":"10.1186/s41687-025-00967-1","DOIUrl":"10.1186/s41687-025-00967-1","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"132"},"PeriodicalIF":2.9,"publicationDate":"2025-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618777/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145524216","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 : 2025-11-14DOI: 10.1186/s41687-025-00963-5
Devika Nair, Jacquelyn S Pennings, Hayden B Bosworth, Kenneth E Freedland, Sunil Kripalani, Elisa J Gordon, Gurjeet S Birdee, Justin M Bachmann
{"title":"Validation of a two-item short form of the perceived health competence scale.","authors":"Devika Nair, Jacquelyn S Pennings, Hayden B Bosworth, Kenneth E Freedland, Sunil Kripalani, Elisa J Gordon, Gurjeet S Birdee, Justin M Bachmann","doi":"10.1186/s41687-025-00963-5","DOIUrl":"10.1186/s41687-025-00963-5","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"131"},"PeriodicalIF":2.9,"publicationDate":"2025-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145524218","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 : 2025-11-06DOI: 10.1186/s41687-025-00956-4
Theresa Coles, Laura S Mkumba, Lauren Wright, Frederick A Godley, Timothy A Collins, David W Jang
Purpose: To develop a patient-reported screening tool, the Sinus Headache Screener (SHS), to differentiate non-rhinogenic facial pain (NRFP) from chronic rhinosinusitis (CRS) using qualitative research methods.
Methods: We conducted semi-structured interviews with 26 English-speaking adults (15 NRFP, 11 CRS). Interviews included concept elicitation and cognitive interviewing techniques. Content analysis was used to analyze transcripts, and items were iteratively refined over three rounds of interviews.
Results: The final list of potential SHS items consisted of 89 items across 8 sections, including symptoms, episode characteristics, triggers, and treatments.
Conclusions: This study represents the first step in developing a screening questionnaire to identify patients with NRFP in clinical settings. The item list provides a foundation for future quantitative studies to refine the questionnaire, potentially leading to more appropriate diagnosis and treatment of patients presenting with facial pain or pressure.
{"title":"Development of the Sinus Headache Screener to identify patients with non-rhinogenic facial pain compared with chronic rhinosinusitis in rhinology clinics.","authors":"Theresa Coles, Laura S Mkumba, Lauren Wright, Frederick A Godley, Timothy A Collins, David W Jang","doi":"10.1186/s41687-025-00956-4","DOIUrl":"10.1186/s41687-025-00956-4","url":null,"abstract":"<p><strong>Purpose: </strong>To develop a patient-reported screening tool, the Sinus Headache Screener (SHS), to differentiate non-rhinogenic facial pain (NRFP) from chronic rhinosinusitis (CRS) using qualitative research methods.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with 26 English-speaking adults (15 NRFP, 11 CRS). Interviews included concept elicitation and cognitive interviewing techniques. Content analysis was used to analyze transcripts, and items were iteratively refined over three rounds of interviews.</p><p><strong>Results: </strong>The final list of potential SHS items consisted of 89 items across 8 sections, including symptoms, episode characteristics, triggers, and treatments.</p><p><strong>Conclusions: </strong>This study represents the first step in developing a screening questionnaire to identify patients with NRFP in clinical settings. The item list provides a foundation for future quantitative studies to refine the questionnaire, potentially leading to more appropriate diagnosis and treatment of patients presenting with facial pain or pressure.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"130"},"PeriodicalIF":2.9,"publicationDate":"2025-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12592570/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145453528","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 : 2025-11-04DOI: 10.1186/s41687-025-00959-1
Theresa Hunter Gibble, Katherine Kosa, Bonita Basnyat, Susan Martin, Richard E Moses, Payal Jha, Marla C Dubinsky
{"title":"Exploring patient-reported outcome measures to assess symptoms of moderately-to-severely active Crohn's disease in adult and adolescent patients: a qualitative study.","authors":"Theresa Hunter Gibble, Katherine Kosa, Bonita Basnyat, Susan Martin, Richard E Moses, Payal Jha, Marla C Dubinsky","doi":"10.1186/s41687-025-00959-1","DOIUrl":"10.1186/s41687-025-00959-1","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"128"},"PeriodicalIF":2.9,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12586775/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439237","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 : 2025-11-04DOI: 10.1186/s41687-025-00955-5
Heqin Yang, Asmita Priyadarshini Khatiwada, Jeffrey R Curtis, W Benjamin Nowell, Kelly Gavigan, Gary Hawkins, Cheryl Seals, Chad G Rose, Nicholas P McCormick, Kimberly B Garza
Objectives: To identify daily activity limitations, including but not limited to impairments in physical function, experienced by persons with rheumatoid arthritis (RA) and identify Patient-Reported Outcomes Measurement Information System (PROMIS) short form (SF) scales that can measure these limitations.
Methodology: A cross-sectional, web-based survey was conducted among a diverse group of adults with RA across the spectrum of disease activity. PROMIS Upper Extremity (UE) SF7a, Physical Function (PF) SF8b, and a Task Difficulty Scale were used to assess daily activity limitations experienced by persons with RA in the United States. An open-ended question asking what other daily activity limitations respondents experienced was also included. The daily activity limitation in the text response and the three scale items were deductively coded using the International Classification of Functioning, Disability, and Health (ICF) based on an established linking rule. Potential PROMIS SF scales were identified and linked to ICF to measure some activity limitations reported by persons with RA. PROMIS PF SF10a was linked to ICF and compared with UE SF7a and PF SF8b.
Results: Eighty-three out of 99 RA patient respondents answered the open-ended question, the majority (> 70%) of whom had severe or moderate physical function limitations. All 9 second-level sub-categories of the Activities and Participation (A&P) in ICF were linked to the text response to the open-ended question. UE SF7a and PF SF8b were linked to four of these second-level sub-categories (e.g., Mobility), while additional four second-level sub-categories (e.g., General tasks and demands, Interpersonal interactions and relationships) linked to PROMIS Fatigue SF7a and Ability to Participate in Social Roles and Activities (APS) SF4a. Moreover, PF SF10a was linked to four of these second-level sub-categories too, but with fewer items than UE SF7a plus the PF SF8b. Some activity limitations, such as driving and using telecommunication devices, were not linked to any items of the five PROMIS SF scales.
Conclusions: Persons with RA reported a variety of activity limitations across multiple domains, including physical function, telecommunication, social interactions, and other aspects of daily living, which could be a focus for goal-setting communication in the clinical setting. PROMIS PF SF10a may be a more effective and efficient scale to measure 4 sub-categories of daily activity limitations. To more comprehensively assess the spectrum of the impact of RA, it appears advisable to also use PROMIS Fatigue SF7a and APS SF4a to examine General tasks and demands, and Interpersonal interactions and relationships limitations.
{"title":"Assessing activity limitations experienced by persons with rheumatoid arthritis to inform appropriate selection of patient-reported outcomes measures: a qualitative study.","authors":"Heqin Yang, Asmita Priyadarshini Khatiwada, Jeffrey R Curtis, W Benjamin Nowell, Kelly Gavigan, Gary Hawkins, Cheryl Seals, Chad G Rose, Nicholas P McCormick, Kimberly B Garza","doi":"10.1186/s41687-025-00955-5","DOIUrl":"10.1186/s41687-025-00955-5","url":null,"abstract":"<p><strong>Objectives: </strong>To identify daily activity limitations, including but not limited to impairments in physical function, experienced by persons with rheumatoid arthritis (RA) and identify Patient-Reported Outcomes Measurement Information System (PROMIS) short form (SF) scales that can measure these limitations.</p><p><strong>Methodology: </strong>A cross-sectional, web-based survey was conducted among a diverse group of adults with RA across the spectrum of disease activity. PROMIS Upper Extremity (UE) SF7a, Physical Function (PF) SF8b, and a Task Difficulty Scale were used to assess daily activity limitations experienced by persons with RA in the United States. An open-ended question asking what other daily activity limitations respondents experienced was also included. The daily activity limitation in the text response and the three scale items were deductively coded using the International Classification of Functioning, Disability, and Health (ICF) based on an established linking rule. Potential PROMIS SF scales were identified and linked to ICF to measure some activity limitations reported by persons with RA. PROMIS PF SF10a was linked to ICF and compared with UE SF7a and PF SF8b.</p><p><strong>Results: </strong>Eighty-three out of 99 RA patient respondents answered the open-ended question, the majority (> 70%) of whom had severe or moderate physical function limitations. All 9 second-level sub-categories of the Activities and Participation (A&P) in ICF were linked to the text response to the open-ended question. UE SF7a and PF SF8b were linked to four of these second-level sub-categories (e.g., Mobility), while additional four second-level sub-categories (e.g., General tasks and demands, Interpersonal interactions and relationships) linked to PROMIS Fatigue SF7a and Ability to Participate in Social Roles and Activities (APS) SF4a. Moreover, PF SF10a was linked to four of these second-level sub-categories too, but with fewer items than UE SF7a plus the PF SF8b. Some activity limitations, such as driving and using telecommunication devices, were not linked to any items of the five PROMIS SF scales.</p><p><strong>Conclusions: </strong>Persons with RA reported a variety of activity limitations across multiple domains, including physical function, telecommunication, social interactions, and other aspects of daily living, which could be a focus for goal-setting communication in the clinical setting. PROMIS PF SF10a may be a more effective and efficient scale to measure 4 sub-categories of daily activity limitations. To more comprehensively assess the spectrum of the impact of RA, it appears advisable to also use PROMIS Fatigue SF7a and APS SF4a to examine General tasks and demands, and Interpersonal interactions and relationships limitations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"9 1","pages":"129"},"PeriodicalIF":2.9,"publicationDate":"2025-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12586814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439250","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}