{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T08:13:19Z","timestamp":1791274399136,"version":"4.1.0"},"reference-count":62,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Cancer"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Quality of life (QoL) questionnaires are used in many disease areas to measure the burden that a disease causes for patients, which help provide insights into disease impact, identify unmet medical needs, and inform patient-centered drug development and value assessment for treatments. The collection of data imposes both a significant burden on patients as well as effort on health care personnel, thus incurring high costs for the health care system. Given that patients share detailed information about their condition and treatment experiences on social media and patient forums, an important research question is to what extent information about QoL can be obtained from patients\u2019 online forum posts to potentially complement information obtained from questionnaires.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n This study aimed to assess how much QoL information can be gained from the analysis of posts by patients in online health care communities and whether this information is rich enough to estimate individual patient\u2019s QoL based on their posts. We conducted this feasibility study in the context of breast cancer as it is the most prevalent cancer in the female population.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n We recruited 134 female patients diagnosed with breast cancer on the Inspire patient online forum, who voluntarily participated in our feasibility study. They filled in the EORTC (European Organisation for Research and Treatment of Cancer) QLQ-C30 and QLQ-BR23 questionnaires consisting of 30 general questions and 23 additional breast cancer\u2013specific questions and provided consent to analyze their posts and comments on the online forum (756 posts and 19,478 comments). Posts were coded manually to identify parts of the text providing answers to 1 of the aforementioned 53 questions.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n The data annotation yielded a substantial agreement (mean Fleiss \u03ba of 0.5, SD 0.28). Overall, we found answers in the coded data for 50 out of 53 EORTC QLQ-C30 and QLQ-BR23 questions. The information coded in the posts reliably predicted the answers given in the questionnaires (\n F<\/jats:italic>\n 1<\/jats:sub>\n -score=0.7), with even better results when grouping similar questions (\n F<\/jats:italic>\n 1<\/jats:sub>\n -score=0.8 for fine-grained and 0.9 for coarse-grained grouping). The 5 questions that were most frequently answered on the basis of the coded posts were \u201cDid you feel ill or unwell?\u201d (304 of 2683 annotated posts and comments), \u201cDid you worry?\u201d (105 posts and comments), \u201cHave you had pain?\u201d (104 posts and comments), \u201cDid you feel tense?\u201d (85 posts and comments), and \u201cWere you limited in doing either your work or other daily activities?\u201d (77 posts and comments).\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Our feasibility study shows that there is valuable QoL-related information in posts of online patient communities, which can potentially serve as an innovative low-burden QoL monitoring approach. Future research should consider how these insights can be used to complement existing QoL instruments and whether the process of extracting QoL-related information can be automated.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/76044","type":"journal-article","created":{"date-parts":[[2026,2,23]],"date-time":"2026-02-23T18:00:07Z","timestamp":1771869607000},"page":"e76044-e76044","source":"Crossref","is-referenced-by-count":1,"title":["Extracting Quality of Life Information of Patients Diagnosed With Breast Cancer From Health Care Online Forum Posts: Data Feasibility Study"],"prefix":"10.2196","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7728-2884","authenticated-orcid":false,"given":"David Maria","family":"Schmidt","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-7743-5401","authenticated-orcid":false,"given":"Raoul","family":"Schubert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-8854-5780","authenticated-orcid":false,"given":"Brian Po-Han","family":"Chen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1477-3170","authenticated-orcid":false,"given":"Deborah","family":"Kuk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-8465-0690","authenticated-orcid":false,"given":"Valmeek","family":"Kudesia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6986-8145","authenticated-orcid":false,"given":"Andreas","family":"Hinz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4771-441X","authenticated-orcid":false,"given":"Philipp","family":"Cimiano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,4,30]]},"reference":[{"key":"R1","unstructured":"Constitution of the World Health Organization. World Health Organization; 1948. URL: https:\/\/www.globalhealthrights.org\/wp-content\/uploads\/2013\/10\/Constitution-of-the-World-Health-Organization-WHO.pdf [Accessed 06-04-2026]"},{"issue":"5","key":"R2","doi-asserted-by":"publisher","first-page":"365","DOI":"10.1093\/jnci\/85.5.365","article-title":"The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology","volume":"85","author":"Aaronson","journal-title":"J Natl Cancer Inst"},{"issue":"9 Suppl 10","key":"R3","first-page":"133","volume":"16","author":"Jacobsen","journal-title":"Oncology (Williston Park)"},{"issue":"8","key":"R4","doi-asserted-by":"publisher","first-page":"1181","DOI":"10.1016\/s0959-8049(98)00018-5","article-title":"Quality of life assessment in daily clinical oncology practice: a feasibility study","volume":"34","author":"Detmar","journal-title":"Eur J Cancer"},{"issue":"1","key":"R5","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1023\/a:1016692804023","article-title":"Oncologists\u2019 use of quality of life information: results of a survey of Eastern Cooperative Oncology Group physicians","volume":"10","author":"Bezjak","journal-title":"Qual Life Res"},{"issue":"6","key":"R6","doi-asserted-by":"publisher","first-page":"513","DOI":"10.1023\/a:1008826408328","article-title":"Patients\u2019 experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life","volume":"7","author":"Buxton","journal-title":"Qual Life Res"},{"issue":"1","key":"R7","doi-asserted-by":"publisher","first-page":"51","DOI":"10.1038\/sj.bjc.6600001","article-title":"Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology","volume":"86","author":"Velikova","journal-title":"Br J Cancer"},{"issue":"3","key":"R8","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1159\/000224158","article-title":"Towards the implementation of quality of life monitoring in daily clinical routine: methodological issues and clinical implication","volume":"4","author":"Giesinger","journal-title":"Breast Care (Basel)"},{"issue":"1","key":"R9","doi-asserted-by":"publisher","first-page":"137","DOI":"10.3233\/JPD-202457","article-title":"A patient-centered conceptual model of symptoms and their impact in early Parkinson\u2019s disease: a qualitative study","volume":"12","author":"Staunton","journal-title":"J Parkinsons Dis"},{"issue":"4","key":"R10","doi-asserted-by":"publisher","first-page":"1957","DOI":"10.3233\/JPD-212636","article-title":"Predictive value of verbatim Parkinson\u2019s disease patient-reported symptoms of postural instability and falling","volume":"11","author":"Javidnia","journal-title":"J Parkinsons Dis"},{"issue":"3","key":"R11","doi-asserted-by":"publisher","first-page":"601","DOI":"10.1007\/s40744-023-00531-7","article-title":"Patient experience of Sj\u00f6gren\u2019s disease and its multifaceted impact on patients\u2019 lives","volume":"10","author":"Perella","journal-title":"Rheumatol Ther"},{"issue":"1","key":"R12","doi-asserted-by":"publisher","DOI":"10.1183\/23120541.00128-2018","article-title":"Patients\u2019 perspectives on COPD: findings from a social media listening study","volume":"5","author":"Cook","journal-title":"ERJ Open Res"},{"issue":"3","key":"R13","doi-asserted-by":"publisher","first-page":"496","DOI":"10.1093\/jamia\/ocw133","article-title":"Using social media to monitor mental health discussions - evidence from Twitter","volume":"24","author":"McClellan","journal-title":"J Am Med Inform Assoc"},{"issue":"1","key":"R14","doi-asserted-by":"publisher","first-page":"27","DOI":"10.1016\/j.cmpb.2015.03.008","article-title":"Screening Internet forum participants for depression symptoms by assembling and enhancing multiple NLP methods","volume":"120","author":"Karmen","journal-title":"Comput Methods Programs Biomed"},{"issue":"1","key":"R15","doi-asserted-by":"publisher","first-page":"237","DOI":"10.1007\/s10708-018-9960-6","article-title":"Capturing and mapping quality of life using Twitter data","volume":"85","author":"Zivanovic","journal-title":"GeoJournal"},{"issue":"9","key":"R16","doi-asserted-by":"publisher","DOI":"10.2196\/19694","article-title":"Exploring the health-related quality of life of patients treated with immune checkpoint inhibitors: social media study","volume":"22","author":"Cott\u00e9","journal-title":"J Med Internet Res"},{"issue":"3","key":"R17","doi-asserted-by":"publisher","first-page":"209","DOI":"10.3322\/caac.21660","article-title":"Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries","volume":"71","author":"Sung","journal-title":"CA Cancer J Clin"},{"key":"R18","doi-asserted-by":"publisher","DOI":"10.1016\/j.breast.2015.12.008","article-title":"Quality of life in elderly patients with localized breast cancer treated with radiotherapy. A prospective study","volume":"26","author":"Arraras","journal-title":"Breast"},{"issue":"4","key":"R19","doi-asserted-by":"publisher","first-page":"564","DOI":"10.1007\/s11764-020-00950-3","article-title":"Quality of life and mental health in breast cancer survivors compared with non-cancer controls: a study of patient-reported outcomes in the United Kingdom","volume":"15","author":"Carreira","journal-title":"J Cancer Surviv"},{"issue":"17","key":"R20","doi-asserted-by":"publisher","first-page":"2613","DOI":"10.1016\/j.ejca.2005.05.017","article-title":"Quality of life among long-term breast cancer survivors: a systematic review","volume":"41","author":"Mols","journal-title":"Eur J Cancer"},{"issue":"1","key":"R21","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/1756-9966-27-32","article-title":"Health-related quality of life in breast cancer patients: a bibliographic review of the literature from 1974 to 2007","volume":"27","author":"Montazeri","journal-title":"J Exp Clin Cancer Res"},{"key":"R22","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejca.2018.11.024","article-title":"General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States","volume":"107","author":"Nolte","journal-title":"Eur J Cancer"},{"issue":"7","key":"R23","doi-asserted-by":"publisher","first-page":"958","DOI":"10.3109\/0284186X.2013.879998","article-title":"European reference values for the quality of life questionnaire EORTC QLQ-C30: results of a German investigation and a summarizing analysis of six European general population normative studies","volume":"53","author":"Hinz","journal-title":"Acta Oncol"},{"issue":"3","key":"R24","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.6.3.e34","article-title":"Improving the quality of web surveys: the checklist for reporting results of internet e-surveys (CHERRIES)","volume":"6","author":"Eysenbach","journal-title":"J Med Internet Res"},{"key":"R25","doi-asserted-by":"crossref","unstructured":"Grishman R Sundheim B . Message understanding conference - 6: a brief history. Presented at: Proceedings of the 16th International Conference on Computational Linguistics (COLING 1996); Aug 5-9, 1996; Copenhagen, Denmark. [doi: 10.3115\/992628.992709]","DOI":"10.3115\/992628.992709"},{"issue":"1","key":"R26","doi-asserted-by":"publisher","first-page":"50","DOI":"10.1109\/TKDE.2020.2981314","article-title":"A survey on deep learning for named entity recognition","volume":"34","author":"Li","journal-title":"IEEE Trans Knowl Data Eng"},{"key":"R27","doi-asserted-by":"crossref","unstructured":"Advanced Data Mining Techniques. Springer; 2008. [doi: 10.1007\/978-3-540-76917-0]","DOI":"10.1007\/978-3-540-76917-0"},{"issue":"5","key":"R28","doi-asserted-by":"publisher","first-page":"378","DOI":"10.1037\/h0031619","article-title":"Measuring nominal scale agreement among many raters","volume":"76","author":"Fleiss","journal-title":"Psychol Bull"},{"key":"R29","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2019.09.011","article-title":"Hand-foot syndrome and its impact on daily activities in breast cancer patients receiving docetaxel-based chemotherapy","volume":"43","author":"Hsu","journal-title":"Eur J Oncol Nurs"},{"key":"R30","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2021.103864","article-title":"Development of a generalizable natural language processing pipeline to extract physician-reported pain from clinical reports: generated using publicly-available datasets and tested on institutional clinical reports for cancer patients with bone metastases","volume":"120","author":"Naseri","journal-title":"J Biomed Inform"},{"issue":"6","key":"R31","doi-asserted-by":"publisher","first-page":"1492","DOI":"10.1016\/j.jpainsymman.2018.02.016","article-title":"Machine learning methods to extract documentation of breast cancer symptoms from electronic health records","volume":"55","author":"Forsyth","journal-title":"J Pain Symptom Manage"},{"key":"R32","volume":"2011","author":"Pakhomov","journal-title":"AMIA Annu Symp Proc"},{"issue":"6","key":"R33","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.4305","article-title":"A scalable framework to detect personal health mentions on Twitter","volume":"17","author":"Yin","journal-title":"J Med Internet Res"},{"key":"R34","doi-asserted-by":"publisher","DOI":"10.3808\/jei.201500311","article-title":"Atmospheric environment and quality of life information extraction from Twitter with the use of self-organizing maps","volume":"26","author":"Riga","journal-title":"J Environ Inform"},{"key":"R35","doi-asserted-by":"publisher","DOI":"10.3233\/SHTI190388","article-title":"Estimating the health-related quality of life of Twitter users using semantic processing","volume":"264","author":"Sarma","journal-title":"Stud Health Technol Inform"},{"key":"R36","doi-asserted-by":"crossref","unstructured":"Zhang X Athanasiadou R Razavian N . Tracing state-level obesity prevalence from sentence embeddings of tweets: a feasibility study. Presented at: Heterogeneous Data Management, Polystores, and Analytics for Healthcare (DMAH 2020, Poly 2020); Aug 31 to Sep 4, 2020. [doi: 10.1007\/978-3-030-71055-2_12]","DOI":"10.1007\/978-3-030-71055-2_12"},{"key":"R37","doi-asserted-by":"publisher","DOI":"10.2196\/70128","article-title":"Patient voices in dialysis care: sentiment analysis and topic modeling study of social media discourse","volume":"27","author":"Shankar","journal-title":"J Med Internet Res"},{"issue":"1","key":"R38","doi-asserted-by":"publisher","DOI":"10.2196\/21453","article-title":"Natural language processing-based virtual cofacilitator for online cancer support groups: protocol for an algorithm development and validation study","volume":"10","author":"Leung","journal-title":"JMIR Res Protoc"},{"issue":"3","key":"R39","doi-asserted-by":"publisher","DOI":"10.2196\/35893","article-title":"Providing care beyond therapy sessions with a natural language processing-based recommender system that identifies cancer patients who experience psychosocial challenges and provides self-care support: pilot study","volume":"8","author":"Leung","journal-title":"JMIR Cancer"},{"key":"R40","doi-asserted-by":"publisher","DOI":"10.2196\/43349","article-title":"Methods for analyzing the contents of social media for health care: scoping review","volume":"25","author":"Fu","journal-title":"J Med Internet Res"},{"issue":"6","key":"R41","doi-asserted-by":"publisher","first-page":"2183","DOI":"10.1007\/s40123-022-00571-2","article-title":"A social media listening study to understand the unmet needs and quality of life in adult and pediatric amblyopia patients","volume":"11","author":"Syntosi","journal-title":"Ophthalmol Ther"},{"issue":"1","key":"R42","doi-asserted-by":"publisher","first-page":"501","DOI":"10.1007\/s40123-022-00620-w","article-title":"Comparison of literature review, social media listening, and qualitative interview research methods in generating patient-reported symptom and functional impact concepts of presbyopia","volume":"12","author":"Findley","journal-title":"Ophthalmol Ther"},{"issue":"3","key":"R43","doi-asserted-by":"publisher","first-page":"407","DOI":"10.1007\/s40123-019-0188-4","article-title":"Evaluating patient experiences in dry eye disease through social media listening research","volume":"8","author":"Cook","journal-title":"Ophthalmol Ther"},{"issue":"1","key":"R44","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2021.11.032","article-title":"P33 patient experiences and insights on chronic ocular pain from a social media listening study","volume":"25","author":"Goel","journal-title":"Value Health"},{"issue":"12","key":"R45","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2022.09.2184","article-title":"PCR251 retrospective social listening study of patients living with systemic lupus erythematosus (SLE): understanding the patient experience","volume":"25","author":"Spies","journal-title":"Value Health"},{"key":"R46","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2019.09.2716","article-title":"PUK32 patient insights for immunoglobulin A nephropathy (IgAN) using social media listening","volume":"22","author":"Tyagi","journal-title":"Value Health"},{"key":"R47","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2019.09.2717","article-title":"PUK33 patient insights for complement 3 glomerulopathy (C3G) using social media listening","volume":"22","author":"Tyagi","journal-title":"Value Health"},{"issue":"12","key":"R48","doi-asserted-by":"publisher","first-page":"S476","DOI":"10.1016\/j.jval.2022.09.2366","article-title":"RWD141 exploration of melanoma patient-generated real-world data using an AI-based social listening approach","volume":"25","author":"Tadmouri","journal-title":"Value Health"},{"issue":"9","key":"R49","doi-asserted-by":"publisher","DOI":"10.2196\/18306","article-title":"Social media listening to understand the lived experience of presbyopia: systematic search and content analysis study","volume":"22","author":"Wolffsohn","journal-title":"J Med Internet Res"},{"issue":"1","key":"R50","doi-asserted-by":"publisher","DOI":"10.2196\/31140","article-title":"Social media platforms listening study on atopic dermatitis: quantitative and qualitative findings","volume":"24","author":"Voillot","journal-title":"J Med Internet Res"},{"issue":"1","key":"R51","doi-asserted-by":"publisher","DOI":"10.1186\/s12885-022-09505-4","article-title":"Understanding the lived experience of lung cancer: a European social media listening study","volume":"22","author":"Rodrigues","journal-title":"BMC Cancer"},{"issue":"1","key":"R52","doi-asserted-by":"publisher","DOI":"10.1186\/s41687-020-00242-5","article-title":"Using a digital patient powered research network to identify outcomes of importance to patients with multiple myeloma","volume":"4","author":"Gries","journal-title":"J Patient Rep Outcomes"},{"issue":"5","key":"R53","doi-asserted-by":"publisher","DOI":"10.2196\/26616","article-title":"Developing an automatic system for classifying chatter about health services on Twitter: case study for Medicaid","volume":"23","author":"Yang","journal-title":"J Med Internet Res"},{"issue":"3","key":"R54","doi-asserted-by":"publisher","DOI":"10.2196\/medinform.7779","article-title":"What patients can tell us: topic analysis for social media on breast cancer","volume":"5","author":"Tapi Nzali","journal-title":"JMIR Med Inform"},{"issue":"1","key":"R55","doi-asserted-by":"publisher","DOI":"10.2196\/31528","article-title":"A new method to extract health-related quality of life data from social media testimonies: algorithm development and validation","volume":"24","author":"Renner","journal-title":"J Med Internet Res"},{"key":"R56","unstructured":"Ware Jr JE . SF-36 health survey. In: The Use of Psychological Testing for Treatment Planning and Outcomes Assessment. 2nd ed. Lawrence Erlbaum Associates; 1999:1227-1246. ISBN: 0585176663"},{"issue":"3","key":"R57","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1016\/0168-8510(90)90421-9","article-title":"EuroQol--a new facility for the measurement of health-related quality of life","volume":"16","author":"EuroQol Group","journal-title":"Health Policy"},{"key":"R58","unstructured":"Taylor VR . Measuring healthy days: population assessment of health-related quality of life. Centers for Disease Control and Prevention (CDC); 2000. URL: https:\/\/stacks.cdc.gov\/view\/cdc\/6406"},{"issue":"3","key":"R59","doi-asserted-by":"publisher","first-page":"570","DOI":"10.1200\/JCO.1993.11.3.570","article-title":"The Functional Assessment of Cancer Therapy scale: development and validation of the general measure","volume":"11","author":"Cella","journal-title":"J Clin Oncol"},{"issue":"6","key":"R60","doi-asserted-by":"publisher","DOI":"10.2196\/29238","article-title":"Incorporating unstructured patient narratives and health insurance claims data in pharmacovigilance: natural language processing analysis of patient-generated texts about systemic lupus erythematosus","volume":"7","author":"Matsuda","journal-title":"JMIR Public Health Surveill"},{"issue":"2","key":"R61","doi-asserted-by":"publisher","first-page":"297","DOI":"10.1007\/s13555-020-00356-0","article-title":"Qualitative assessment of adult patients\u2019 perception of atopic dermatitis using natural language processing analysis in a cross-sectional study","volume":"10","author":"Falissard","journal-title":"Dermatol Ther (Heidelb)"},{"issue":"1","key":"R62","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1145\/3569580","article-title":"Depression detection from social media text analysis using natural language processing techniques and hybrid deep learning model","volume":"23","author":"Tejaswini","journal-title":"ACM Trans Asian Low Resour Lang Inf Process"}],"container-title":["JMIR Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/cancer.jmir.org\/2026\/1\/e76044","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T18:07:26Z","timestamp":1782842846000},"score":1,"resource":{"primary":{"URL":"https:\/\/cancer.jmir.org\/2026\/1\/e76044"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,4,30]]},"references-count":62,"URL":"https:\/\/doi.org\/10.2196\/76044","relation":{},"ISSN":["2369-1999"],"issn-type":[{"value":"2369-1999","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,4,30]]},"article-number":"v12i5e76044"}}