Martini A, Lovell DJ, Albani S et al (2022) Juvenile idiopathic arthritis. Nat Rev Dis Primers 8(1):5. https://doi.org/10.1038/s41572-021-00332-8
Petty RE, Southwood TR, Manners P et al (2004) International League of associations for rheumatology. International League of associations for rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rheumatol 31(2):390–392
Consolaro A, Giancane G, Schiappapietra B et al (2016) Clinical outcome measures in juvenile idiopathic arthritis. Pediatr Rheumatol Online J 14(1):23. https://doi.org/10.1186/s12969-016-0085-5
Article PubMed PubMed Central Google Scholar
Kearsley-Fleet L, Klotsche J, van Straalen JW et al (2022) Burden of comorbid conditions in children and young people with juvenile idiopathic arthritis: a collaborative analysis of 3 JIA registries. Rheumatology (Oxford) 61(6):2524–2534. https://doi.org/10.1093/rheumatology/keab641
Doeleman MJH, de Roock S, Buijsse N et al (2021) Monitoring patients with juvenile idiopathic arthritis using health-related quality of life. Pediatr Rheumatol Online J 19(1):40. https://doi.org/10.1186/s12969-021-00527-z
Article PubMed PubMed Central Google Scholar
Min M, Hancock DG, Aromataris E et al (2020) Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review protocol. JBI Evid Synth 18(9):2058–2064. https://doi.org/10.11124/JBISRIR-D-19-00301
Roemer J, Klein A, Horneff G (2023) Prevalence and risk factors of depressive symptoms in children and adolescents with juvenile idiopathic arthritis. Rheumatol Int 43(8):1497–1505. https://doi.org/10.1007/s00296-023-05323-4
Article PubMed PubMed Central Google Scholar
Seid M, Opipari L, Huang B et al (2009) Disease control and health-related quality of life in juvenile idiopathic arthritis. Arthritis Rheum 61(3):393–399. https://doi.org/10.1002/art.24477
Article PubMed PubMed Central Google Scholar
You L, Qiu A, Huang B et al (2020) Early detection of high disease activity in juvenile idiopathic arthritis by sequential monitoring of patient’s health-related quality of life scores. Biom J 62(5):1343–1356. https://doi.org/10.1002/bimj.201900127
Haraldstad K, Wahl A, Andenæs R et al (2019) A systematic review of quality of life research in medicine and health sciences. Qual Life Res 28(10):2641–2650. https://doi.org/10.1007/s11136-019-02214-9
Article CAS PubMed PubMed Central Google Scholar
Ravens-Sieberer U, Gosch A, Abel T et al (2001) Quality of life in children and adolescents: a European public health perspective. Soz Präventivmed 46(5):294–302. https://doi.org/10.1007/BF01321080
Article CAS PubMed Google Scholar
Churruca K, Pomare C, Ellis LA et al (2021) Patient-reported outcome measures (PROMs): a review of generic and condition-specific measures and a discussion of trends and issues. Health Expect 24(4):1015–1024. https://doi.org/10.1111/hex.13254
Article PubMed PubMed Central Google Scholar
Fletcher BR, Damery S, Aiyegbusi OL et al (2022) Symptom burden and health-related quality of life in chronic kidney disease: a global systematic review and meta-analysis. PLoS Med 19(4):e1003954. https://doi.org/10.1371/journal.pmed.1003954
Article PubMed PubMed Central Google Scholar
Rothmund M, Sodergren S, Rohde G et al (2023) Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies. Qual Life Res 32(4):965–976. https://doi.org/10.1007/s11136-022-03259-z
Młyńczyk J, Abramowicz P, Stawicki MK et al (2022) Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice. Rheumatol Int 42(2):191–203. https://doi.org/10.1007/s00296-021-05077-x
Haverman L, Grootenhuis MA, van den Berg JM et al (2012) Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a web-based survey. Arthritis Care Res (Hoboken) 64(5):694–703. https://doi.org/10.1002/acr.21609
Article CAS PubMed Google Scholar
Mann CM, Schanberg LE, Wang M et al (2020) Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus. Qual Life Res 29(9):2573–2584. https://doi.org/10.1007/s11136-020-02513-6
Article CAS PubMed PubMed Central Google Scholar
Terwee CB, Peipert JD, Chapman R et al (2021) Minimal important change (MIC): a conceptual clarification and systematic review of MIC estimates of PROMIS measures. Qual Life Res 30(10):2729–2754. https://doi.org/10.1007/s11136-021-02925-y
Article PubMed PubMed Central Google Scholar
Morgan EM, Mara CA, Huang B et al (2017) Establishing clinical meaning and defining important differences for patient-reported outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Qual Life Res 26(3):565–586. https://doi.org/10.1007/s11136-016-1468-2
Zigler C, Li Z, Hernandez A et al (2024) Evaluating anchor variables and variation in meaningful score differences for PROMIS® Pediatric measures in children and adolescents living with a rheumatic disease. Qual Life Res 33:3449–3457. https://doi.org/10.1007/s11136-024-03800-2
Article CAS PubMed PubMed Central Google Scholar
Forrest CB, Bevans KB, Pratiwadi R et al (2014) Development of the PROMIS ® pediatric global health (PGH-7) measure. Qual Life Res 23(4):1221–1231. https://doi.org/10.1007/s11136-013-0581-8
Forrest CB, Tucker CA, Ravens-Sieberer U et al (2016) Concurrent validity of the PROMIS® pediatric global health measure. Qual Life Res 25(3):739–751. https://doi.org/10.1007/s11136-015-1111-7
Mara CA, Carle AC, Goldschneider KR et al (2023) Development and evaluation of the patient-reported outcomes measurement information system (PROMIS) pediatric pain quality item bank and short form. Pain 164(3):555–562. https://doi.org/10.1097/j.pain.0000000000002739
Quinn H, Thissen D, Liu Y et al (2014) Using item response theory to enrich and expand the PROMIS® pediatric self report banks. Health Qual Life Outcomes 12:160. https://doi.org/10.1186/s12955-014-0160-x
Article PubMed PubMed Central Google Scholar
Reeve BB, Hays RD, Bjorner JB et al (2007) Psychometric evaluation and calibration of health-related quality of life item banks: plans for the patient-reported outcomes Measurement Information System (PROMIS). Med Care 45(5 Suppl 1):S22–S31. https://doi.org/10.1097/01.mlr.0000250483.85507.04
Forrest CB, Schuchard J, Bruno C et al (2022) Self-reported Health outcomes of Children and Youth with 10 chronic diseases. J Pediatr 246:207–212e1. https://doi.org/10.1016/j.jpeds.2022.02.052
Article PubMed PubMed Central Google Scholar
Shen B, Shi S, Cui H et al (2022) A study protocol for the management of children with juvenile idiopathic arthritis based on ePROs. Front Pediatr 10:905182. https://doi.org/10.3389/fped.2022.905182
Article PubMed PubMed Central Google Scholar
Gutiérrez-Suárez R, Pistorio A, Cespedes Cruz A et al (2007) Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. Rheumatology (Oxford) 46(2):314–320. https://doi.org/10.1093/rheumatology/kel218
Bertilsson L, Andersson-Gäre B, Fasth A et al (2013) Disease course, outcome, and predictors of outcome in a population-based juvenile chronic arthritis cohort followed for 17 years. J Rheumatol 40(5):715–724. https://doi.org/10.3899/jrheum.120602
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