{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,3]],"date-time":"2026-07-03T17:15:07Z","timestamp":1783098907490,"version":"3.54.6"},"reference-count":35,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2024,1,3]],"date-time":"2024-01-03T00:00:00Z","timestamp":1704240000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2024,1,3]],"date-time":"2024-01-03T00:00:00Z","timestamp":1704240000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"crossref","award":["NIAMS U19 069526"],"award-info":[{"award-number":["NIAMS U19 069526"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["HHSN265200423601C"],"award-info":[{"award-number":["HHSN265200423601C"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100014804","name":"Neurofibromatosis Therapeutic Acceleration Program","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014804","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2024,3]]},"DOI":"10.1007\/s11136-023-03574-z","type":"journal-article","created":{"date-parts":[[2024,1,3]],"date-time":"2024-01-03T16:03:22Z","timestamp":1704297802000},"page":"865-873","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks"],"prefix":"10.1007","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1840-2537","authenticated-orcid":false,"given":"Jin-Shei","family":"Lai","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cindy","family":"Nowinski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie M.","family":"Rangel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shalini Thareja","family":"Batra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly","family":"Mueller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Chamlin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vitali","family":"Ustsinovich","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Cella","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maxwell","family":"Mansolf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy S.","family":"Paller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,1,3]]},"reference":[{"issue":"9509","key":"3574_CR1","doi-asserted-by":"publisher","first-page":"528","DOI":"10.1016\/S0140-6736(06)68184-1","volume":"367","author":"BG Link","year":"2006","unstructured":"Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509), 528\u2013529.","journal-title":"The Lancet"},{"issue":"5","key":"3574_CR2","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1093\/jpepsy\/jsz004","volume":"44","author":"DM Bakula","year":"2019","unstructured":"Bakula, D. M., Sharkey, C. M., Perez, M. N., Espeleta, H. C., Hawkins, M., Chaney, J. M., & Mullins, L. L. (2019). The role of stigma in the relationship between illness intrusiveness and adjustment in adolescents and young adults: A path model. Journal of Pediatric Psychology, 44(5), 611\u2013619.","journal-title":"Journal of Pediatric Psychology"},{"issue":"11","key":"3574_CR3","doi-asserted-by":"publisher","first-page":"1029","DOI":"10.1177\/0269215513487234","volume":"27","author":"KM van der Beek","year":"2013","unstructured":"van der Beek, K. M., Bos, I., Middel, B., & Wynia, K. (2013). Experienced stigmatization reduced quality of life of patients with a neuromuscular disease: A cross-sectional study. Clinical Rehabilitation, 27(11), 1029\u20131038.","journal-title":"Clinical Rehabilitation"},{"issue":"4","key":"3574_CR4","doi-asserted-by":"publisher","first-page":"332","DOI":"10.1111\/j.1525-1470.1991.tb00945.x","volume":"8","author":"DP Krowchuk","year":"1991","unstructured":"Krowchuk, D. P., Stancin, T., Keskinen, R., Walker, R., Bass, J., & Anglin, T. M. (1991). The psychosocial effects of acne on adolescents. Pediatric Dermatology, 8(4), 332\u2013338.","journal-title":"Pediatric Dermatology"},{"issue":"7","key":"3574_CR5","first-page":"1","volume":"9","author":"JK Tan","year":"2004","unstructured":"Tan, J. K. (2004). Psychosocial impact of acne vulgaris: Evaluating the evidence. Skin Therapy Lett, 9(7), 1\u20133.","journal-title":"Skin Therapy Lett"},{"issue":"2","key":"3574_CR6","doi-asserted-by":"publisher","first-page":"157","DOI":"10.1177\/1359105311414952","volume":"17","author":"VA Earnshaw","year":"2012","unstructured":"Earnshaw, V. A., & Quinn, D. M. (2012). The impact of stigma in healthcare on people living with chronic illnesses. Journal of Health Psychology, 17(2), 157\u2013168.","journal-title":"Journal of Health Psychology"},{"key":"3574_CR7","doi-asserted-by":"publisher","DOI":"10.1002\/oby.20617","author":"RL Pearl","year":"2014","unstructured":"Pearl, R. L., White, M. A., & Grilo, C. M. (2014). Weight bias internalization, depression, and self-reported health among overweight binge eating disorder patients. Obesity. https:\/\/doi.org\/10.1002\/oby.20617","journal-title":"Obesity"},{"issue":"3","key":"3574_CR8","doi-asserted-by":"publisher","first-page":"533","DOI":"10.1038\/oby.2011.123","volume":"20","author":"CA Roberto","year":"2012","unstructured":"Roberto, C. A., Sysko, R., Bush, J., Pearl, R., Puhl, R. M., Schvey, N. A., & Dovidio, J. F. (2012). Clinical correlates of the weight bias internalization scale in a sample of obese adolescents seeking bariatric surgery. Obesity, 20(3), 533\u2013539.","journal-title":"Obesity"},{"issue":"1","key":"3574_CR9","doi-asserted-by":"publisher","first-page":"79","DOI":"10.1002\/oby.20561","volume":"22","author":"A Hilbert","year":"2014","unstructured":"Hilbert, A., Braehler, E., Haeuser, W., & Zenger, M. (2014). Weight bias internalization, core self-evaluation, and health in overweight and obese persons. Obesity, 22(1), 79\u201385.","journal-title":"Obesity"},{"issue":"7","key":"3574_CR10","doi-asserted-by":"publisher","first-page":"1026","DOI":"10.1111\/nmo.12357","volume":"26","author":"TH Taft","year":"2014","unstructured":"Taft, T. H., Riehl, M. E., Dowjotas, K. L., & Keefer, L. (2014). Moving beyond perceptions: Internalized stigma in the irritable bowel syndrome. Neurogastroenterology and Mot0ility, 26(7), 1026\u20131035.","journal-title":"Neurogastroenterology and Mot0ility"},{"issue":"4","key":"3574_CR11","doi-asserted-by":"publisher","first-page":"757","DOI":"10.1038\/oby.2010.234","volume":"19","author":"LR Vartanian","year":"2011","unstructured":"Vartanian, L. R., & Novak, S. A. (2011). Internalized societal attitudes moderate the impact of weight stigma on avoidance of exercise. Obesity, 19(4), 757\u2013762.","journal-title":"Obesity"},{"issue":"2","key":"3574_CR12","doi-asserted-by":"publisher","first-page":"100","DOI":"10.5463\/sra.v1i3.35","volume":"2","author":"SAM Stevelink","year":"2012","unstructured":"Stevelink, S. A. M., Wu, I. C., Voorend, C. G. N., & van Brakel, W. H. (2012). The psychometric assessment of internalized stigma instruments: A systematic review. Stigma Research and Action, 2(2), 100\u2013118.","journal-title":"Stigma Research and Action"},{"key":"3574_CR13","doi-asserted-by":"publisher","first-page":"209","DOI":"10.1016\/j.yebeh.2015.02.038","volume":"46","author":"J-S Lai","year":"2015","unstructured":"Lai, J.-S., Nowinski, C. J., Zelko, F., Wortman, K., Burns, J., Nordli, D. R., & Cella, D. (2015). Validation of the Neuro-QoL measurement system in children with epilepsy. Epilepsy & Behavior, 46, 209\u2013214.","journal-title":"Epilepsy & Behavior"},{"key":"3574_CR14","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1016\/j.pediatrneurol.2019.04.004","volume":"101","author":"KA Harmon","year":"2019","unstructured":"Harmon, K. A., Day, A. M., Hammill, A. M., Pinto, A. L., McCulloch, C. E., & Comi, A. M. (2019). Quality of life in children with Sturge-Weber syndrome. Pediatric Neurology, 101, 26\u201332.","journal-title":"Pediatric Neurology"},{"issue":"5 Suppl 1","key":"3574_CR15","doi-asserted-by":"publisher","first-page":"S3","DOI":"10.1097\/01.mlr.0000258615.42478.55","volume":"45","author":"D Cella","year":"2007","unstructured":"Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., Ader, D., Fries, J. F., Bruce, B., & Rose, M. (2007). The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3\u2013S11.","journal-title":"Medical Care"},{"issue":"4","key":"3574_CR16","doi-asserted-by":"publisher","first-page":"1049","DOI":"10.1007\/s11136-013-0548-9","volume":"23","author":"J-S Lai","year":"2014","unstructured":"Lai, J.-S., Zelko, F., Krull, K., Cella, D., Nowinski, C., Manley, P., & Goldman, S. (2014). Parent-reported cognition of children with cancer and its potential clinical usefulness. Quality of Life Research, 23(4), 1049\u20131058.","journal-title":"Quality of Life Research"},{"issue":"3","key":"3574_CR17","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1177\/1073191111411667","volume":"18","author":"PA Pilkonis","year":"2011","unstructured":"Pilkonis, P. A., Choi, S. W., Reise, S. P., Stover, A. M., Riley, W. T., & Cella, D. (2011). Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS):Depression, anxiety, and anger. Assessment, 18(3), 263\u2013283.","journal-title":"Assessment"},{"issue":"4","key":"3574_CR18","doi-asserted-by":"publisher","first-page":"499","DOI":"10.1111\/jdv.17833","volume":"36","author":"C Luck-Sikorski","year":"2022","unstructured":"Luck-Sikorski, C., Ro\u00dfmann, P., Topp, J., Augustin, M., Sommer, R., & Weinberger, N. A. (2022). Assessment of stigma related to visible skin diseases: A systematic review and evaluation of patient-reported outcome measures. Journal of the European Academy of Dermatology and Venereology, 36(4), 499\u2013525.","journal-title":"Journal of the European Academy of Dermatology and Venereology"},{"key":"3574_CR19","doi-asserted-by":"publisher","first-page":"190","DOI":"10.1016\/j.jpeds.2018.10.019","volume":"206","author":"J-S Lai","year":"2019","unstructured":"Lai, J.-S., Jensen, S. E., Charrow, J., & Listernick, R. (2019). Patient reported outcomes measurement information system and quality of life in neurological disorders measurement system to evaluate quality of life for children and adolescents with neurofibromatosis Type 1 associated plexiform neurofibroma. Journal of Pediatrics, 206, 190\u2013196.","journal-title":"Journal of Pediatrics"},{"issue":"1","key":"3574_CR20","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1177\/1545968311412054","volume":"26","author":"JS Lai","year":"2012","unstructured":"Lai, J. S., Nowinski, C., Victorson, D., Bode, R., Podrabsky, T., McKinney, N., Straube, M., Moy, C., & Cella, D. (2012). Quality-of-life measures in children with neurological conditions: Pediatric neuro-QOL. Neurorehabilitation and Neural Repair, 26(1), 36\u201347.","journal-title":"Neurorehabilitation and Neural Repair"},{"issue":"1","key":"3574_CR21","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/10705519909540118","volume":"6","author":"LT Hu","year":"1999","unstructured":"Hu, L. T., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6(1), 1\u201355.","journal-title":"Structural Equation Modeling"},{"key":"3574_CR22","volume-title":"Principles and practice of structural equation modeling","author":"RB Kline","year":"2008","unstructured":"Kline, R. B. (2008). Principles and practice of structural equation modeling (2nd ed.). Guilford Press.","edition":"2"},{"issue":"7","key":"3574_CR23","doi-asserted-by":"publisher","first-page":"1179","DOI":"10.1007\/s11136-006-0060-6","volume":"15","author":"J-S Lai","year":"2006","unstructured":"Lai, J.-S., Crane, P. K., & Cella, D. (2006). Factor analysis techniques for assessing sufficient unidimensionality of cancer related fatigue. Quality of Life Research, 15(7), 1179\u20131190.","journal-title":"Quality of Life Research"},{"issue":"2","key":"3574_CR24","doi-asserted-by":"publisher","first-page":"285","DOI":"10.1007\/s00381-010-1230-y","volume":"27","author":"J-S Lai","year":"2011","unstructured":"Lai, J.-S., Zelko, F., Butt, Z., Cella, D., Kieran, M. W., Krull, K. R., Magasi, S., & Goldman, S. (2011). Parent-perceived child cognitive function: Results from a sample drawn from the US general population. Child\u2019s Nervous System, 27(2), 285\u2013293.","journal-title":"Child's Nervous System"},{"key":"3574_CR25","volume-title":"Test theory: A unified treatment","author":"RP McDonald","year":"1999","unstructured":"McDonald, R. P. (1999). Test theory: A unified treatment. Lawrence Earlbaum Associates Inc."},{"key":"3574_CR26","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1007\/978-1-4757-2691-6_5","volume-title":"Handbook of modern item response theory","author":"F Samejima","year":"1997","unstructured":"Samejima, F. (1997). The graded response model. In W. J. van der Linden & R. Hambleton (Eds.), Handbook of modern item response theory (pp. 85\u2013100). Springer-Verlag."},{"issue":"1","key":"3574_CR27","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1037\/0021-9010.91.1.25","volume":"91","author":"S Stark","year":"2006","unstructured":"Stark, S., Chernyshenko, O. S., Drasgow, F., & Williams, B. A. (2006). Examining assumptions about item responding in personality assessment: Should ideal point methods be considered for scale development and scoring? Journal of Applied Psychology, 91(1), 25\u201339.","journal-title":"Journal of Applied Psychology"},{"issue":"6","key":"3574_CR28","doi-asserted-by":"publisher","first-page":"439","DOI":"10.1177\/0146621617695522","volume":"41","author":"DR Cri\u015fan","year":"2017","unstructured":"Cri\u015fan, D. R., Tendeiro, J. N., & Meijer, R. R. (2017). Investigating the practical consequences of model misfit in unidimensional IRT models. Applied Psychological Measurement, 41(6), 439\u2013455.","journal-title":"Applied Psychological Measurement"},{"issue":"8","key":"3574_CR29","doi-asserted-by":"publisher","first-page":"1","DOI":"10.18637\/jss.v039.i08","volume":"39","author":"SW Choi","year":"2011","unstructured":"Choi, S. W., Gibbons, L. E., & Crane, P. K. (2011). lordif: An R package for detecting differential item functioning using iterative hybrid ordinal logistic regression\/item response theory and Monte Carlo simulations. Journal of Statistical Software, 39(8), 1\u201330.","journal-title":"Journal of Statistical Software"},{"key":"3574_CR30","volume-title":"PROsetta Stone\u00ae analysis report: A Rosetta stone for patient reported outcomes","author":"D Cella","year":"2016","unstructured":"Cella, D., Schalet, B. D., Kallen, M., Lai, J.-S., Cook, K. F., Rutsohn, J., & Choi, S. W. (2016). PROsetta Stone\u00ae analysis report: A Rosetta stone for patient reported outcomes (Vol. 2). Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University."},{"issue":"1","key":"3574_CR31","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1046\/j.1365-2648.2000.01466.x","volume":"32","author":"G Joachim","year":"2000","unstructured":"Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing, 32(1), 243\u2013248.","journal-title":"Journal of Advanced Nursing"},{"key":"3574_CR32","volume-title":"Social stigma: The psychology of marked relationships","author":"EE Jones","year":"1984","unstructured":"Jones, E. E., Farina, A., Hastorf, A. H., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. W H Freeman & Co."},{"key":"3574_CR33","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2019.112749","volume":"246","author":"K Hartog","year":"2020","unstructured":"Hartog, K., Hubbard, C. D., Krouwer, A. F., Thornicroft, G., Kohrt, B. A., & Jordans, M. J. D. (2020). Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies. Social Science and Medicine, 246, 112749.","journal-title":"Social Science and Medicine"},{"key":"3574_CR34","first-page":"1","volume-title":"Health and health psychology: icH&Hpsy 2017","author":"FA Nearchou","year":"2019","unstructured":"Nearchou, F. A., Campbell, A., Duffy, K., Fehily, M., Ryan, H., & Hennessy, E. (2019). Chronic illness stigma and well-being in youth: The mediating role of support. In Z. Bekirogullari, M. Y. Minas, & R. X. Thambusamy (Eds.), Health and health psychology: icH&Hpsy 2017 (Vol. 30, pp. 1\u201311). Future Academy."},{"issue":"5","key":"3574_CR35","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0096977","volume":"9","author":"DM Quinn","year":"2014","unstructured":"Quinn, D. M., Williams, M. K., Quintana, F., Gaskins, J. L., Overstreet, N. M., Pishori, A., Earnshaw, V. A., Perez, G., & Chaudoir, S. R. (2014). Examining effects of anticipated stigma, centrality, salience, internalization, and outness on psychological distress for people with concealable stigmatized identities. PLoS ONE, 9(5), e96977.","journal-title":"PLoS ONE"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03574-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-023-03574-z\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03574-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,24]],"date-time":"2024-02-24T17:10:43Z","timestamp":1708794643000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-023-03574-z"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,3]]},"references-count":35,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2024,3]]}},"alternative-id":["3574"],"URL":"https:\/\/doi.org\/10.1007\/s11136-023-03574-z","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,1,3]]},"assertion":[{"value":"23 November 2023","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"3 January 2024","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors have no relevant financial or non-financial interests to disclose.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interest"}}]}}