{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T00:42:07Z","timestamp":1788309727345,"version":"build-2803163510"},"reference-count":50,"publisher":"The Journal of Rheumatology","issue":"10","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Rheumatol"],"accepted":{"date-parts":[[2022,5,2]]},"published-print":{"date-parts":[[2022,10]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire\u2013Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL]), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>The most frequently nominated areas of importance for patients\u2019 personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work\/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work\/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Physical activity, work\/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.<\/jats:p>\n               <\/jats:sec>","DOI":"10.3899\/jrheum.211245","type":"journal-article","created":{"date-parts":[[2022,5,20]],"date-time":"2022-05-20T13:32:15Z","timestamp":1653053535000},"page":"1138-1145","source":"Crossref","is-referenced-by-count":12,"title":["Personally Generated Quality of Life Outcomes in Adults With Juvenile Idiopathic Arthritis"],"prefix":"10.3899","volume":"49","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4776-9808","authenticated-orcid":false,"given":"Anita","family":"Tollisen","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7122-5897","authenticated-orcid":false,"given":"Anne M.","family":"Selvaag","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1890-8861","authenticated-orcid":false,"given":"Astrid","family":"Aasland","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2753-9279","authenticated-orcid":false,"given":"Trude","family":"Ingebrigtsen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5252-1770","authenticated-orcid":false,"given":"Joachim","family":"Sagen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7144-5096","authenticated-orcid":false,"given":"Anners","family":"Lerdal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5207-9182","authenticated-orcid":false,"given":"Berit","family":"Flat\u00f8","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2262","published-online":{"date-parts":[[2022,5,15]]},"reference":[{"key":"2025081722551397000_49.10.1138.1","doi-asserted-by":"crossref","unstructured":"Petty R , Cassidy J. Chronic arthritis in childhood. In: Cassidy JT , Petty RE , Laxer RM , Lindsley CB , editors. Textbook of pediatric rheumatology. 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The development of the World Health Organization quality of life assessment instrument (the WHOQOL). In: Orley J , Kunyken W , editors. Quality of life assessment: international perspectives. Berling: Springer-Verlag; 1994."},{"key":"2025081722551397000_49.10.1138.15","doi-asserted-by":"crossref","first-page":"1921","DOI":"10.1080\/09638288.2017.1323018","article-title":"Experiences of employment among young people with juvenile idiopathic arthritis: a qualitative study","volume":"40","author":"Hanson","year":"2018","journal-title":"Disabil Rehabil"},{"key":"2025081722551397000_49.10.1138.16","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1007\/s00296-019-04368-8","article-title":"Re-conceptualizing functional status through experiences of young adults with inflammatory arthritis","volume":"40","author":"Carandang","year":"2020","journal-title":"Rheumatol Int"},{"key":"2025081722551397000_49.10.1138.17","first-page":"1122","article-title":"Early disease course and predictors of disability in juvenile rheumatoid arthritis and juvenile spondyloarthropathy: a 3 year prospective study","volume":"32","author":"Selvaag","year":"2005","journal-title":"J Rheumatol"},{"key":"2025081722551397000_49.10.1138.18","first-page":"390","article-title":"International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001","volume":"31","author":"Petty","year":"2004","journal-title":"J Rheumatol"},{"key":"2025081722551397000_49.10.1138.19","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780230202"},{"key":"2025081722551397000_49.10.1138.20","doi-asserted-by":"publisher","DOI":"10.1007\/BF01593882"},{"key":"2025081722551397000_49.10.1138.21","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kes401"},{"key":"2025081722551397000_49.10.1138.22","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199603000-00003"},{"key":"2025081722551397000_49.10.1138.23","first-page":"129","article-title":"Pain assessment: global use of the Brief Pain Inventory","volume":"23","author":"Cleeland","year":"1994","journal-title":"Ann Acad Med Singapore"},{"key":"2025081722551397000_49.10.1138.24","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0447.1993.tb03388.x"},{"key":"2025081722551397000_49.10.1138.25","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770130405"},{"key":"2025081722551397000_49.10.1138.26","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-1-20"},{"key":"2025081722551397000_49.10.1138.27","doi-asserted-by":"publisher","DOI":"10.1016\/S0885-3924(02)00526-2"},{"key":"2025081722551397000_49.10.1138.28","unstructured":"Cohen J. Statistical power analysis for the behavioral sciences. 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