Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis
| Autor: | Marc D. Natter, Lauren E. Wisk, Aimee O. Hersh, Fatma Dedeoglu, Kenneth D. Mandl, Parissa K. Salimian, Yukiko Kimura, Elissa R. Weitzman, Kara M. Magane, Sarah Ringold |
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| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
Treatment burden
Pediatrics medicine.medical_specialty Side effect Childhood arthritis Health-related quality of life Arthritis Health Informatics Disease Chronic illness Adolescents Autoimmune Disease 03 medical and health sciences Rare Diseases 0302 clinical medicine Health Information Management Quality of life Clinical Research Internal medicine medicine 030212 general & internal medicine Generalized estimating equation Patient reported outcomes Children Disease burden Pediatric 030203 arthritis & rheumatology business.industry Inflammatory and immune system Research lcsh:Public aspects of medicine Pain Research lcsh:RA1-1270 Juvenile idiopathic arthritis medicine.disease Rheumatology 3. Good health Good Health and Well Being Chronic Pain business Mind and Body |
| Zdroj: | Journal of Patient-Reported Outcomes, Vol 2, Iss 1, Pp 1-11 (2018) Weitzman, Elissa R; Wisk, Lauren E; Salimian, Parissa K; Magane, Kara M; Dedeoglu, Fatma; Hersh, Aimee O; et al.(2018). Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.. Journal of patient-reported outcomes, 2(1). doi: 10.1186/s41687-017-0025-2. UCLA: Retrieved from: http://www.escholarship.org/uc/item/0gq8f4xm Journal of Patient-Reported Outcomes Journal of patient-reported outcomes, vol 2, iss 1 |
| ISSN: | 2509-8020 |
| DOI: | 10.1186/s41687-017-0025-2 |
| Popis: | Background Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Methods Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child’s HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Results Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values |
| Databáze: | OpenAIRE |
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