دورية أكاديمية
Patient-perceived Burden of Disease in Pediatric Relapsing Polychondritis.
| العنوان: | Patient-perceived Burden of Disease in Pediatric Relapsing Polychondritis. |
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| المؤلفون: | Rimland CA; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Ferrada MA; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Sinaii N; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Sikora KA; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Colbert RA; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Grayson PC; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors., Katz JD; From the US National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS), National Institutes of Health (NIH), Bethesda, Maryland; University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program, Chapel Hill, North Carolina; NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH, Bethesda, Maryland, USA. james.katz@nih.gov.; C.A. Rimland, PhD, NIAMS, NIH, and the University of North Carolina at Chapel Hill School of Medicine, Medical Scientist Training Program; M.A. Ferrada, MD, NIAMS, NIH; N. Sinaii, MPH, PhD, NIH Clinical Center, Biostatistics and Clinical Epidemiology Service, NIH; K.A. Sikora, MD, NIAMS, NIH; R.A. Colbert, MD, PhD, NIAMS, NIH; P.C. Grayson, MSc, MD, NIAMS, NIH; J.D. Katz, MD, NIAMS, NIH. james.katz@nih.gov.; C.A. Rimland and Dr. Ferrada are co-first authors. Drs. Grayson and Katz are co-senior authors. james.katz@nih.gov. |
| المصدر: | The Journal of rheumatology [J Rheumatol] 2019 Dec; Vol. 46 (12), pp. 1627-1633. Date of Electronic Publication: 2019 May 01. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Intramural |
| اللغة: | English |
| بيانات الدورية: | Publisher: Journal Of Rheumatology Publishing Co Country of Publication: Canada NLM ID: 7501984 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 0315-162X (Print) Linking ISSN: 0315162X NLM ISO Abbreviation: J Rheumatol Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: Toronto : Journal Of Rheumatology Publishing Co Original Publication: Toronto. |
| مواضيع طبية MeSH: | Cost of Illness*, Polychondritis, Relapsing/*diagnosis, Adolescent ; Child ; Diagnostic Self Evaluation ; Female ; Humans ; Male ; Severity of Illness Index |
| مستخلص: | Objective: To assess patient-reported burden of disease in pediatric patients with relapsing polychondritis (RP) and to compare those findings to adult patients. Methods: A survey based on known clinical symptoms of RP was developed and administered to patients with a pediatric diagnosis of RP. Adult patients completed a similar survey. Results: Twenty-one pediatric patients, or their parents, completed surveys. Median age at symptom onset was 6 years (interquartile range 1.8-12). Prior to diagnosis, most pediatric patients went to the emergency room (ER; 61.9%), saw > 3 physicians (57.1%), and took > 1 year to be diagnosed (61.9%). Pediatric patients were often diagnosed with asthma (42.9%), ear infections (42.9%), or sinusitis (33.3%) prior to diagnosis of RP. Symptoms prior to diagnosis included ear pain/redness (85.7%), joint pain/swelling (61.9%), and airway symptoms (38.1%). Four pediatric patients (19%) reported tracheomalacia requiring tracheostomy. Pediatric patients frequently missed school because of their disease (71.4%). Surveys from 290 adult patients were compared to pediatric patients. Pediatric patients were significantly more likely to undergo biopsy (42.9% vs 17.4%; p < 0.01) and be treated with biologics (42.9% vs 19%; p = 0.02). Adults were significantly more likely to be female (87.8% vs 28.6%; p < 0.01) and to report airway symptoms (77.9% vs 47.6%; p = 0.01). Prevalence of disease complications was not significantly different between adult and pediatric patients. Conclusions: The burden of disease in pediatric patients with RP includes missed school, diagnostic delay, ER visits, and multisystem disease, with resultant damage to cartilaginous structures. Differences in airway involvement and treatment approaches may exist between pediatric and adult patients. |
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| معلومات مُعتمدة: | T32 GM008719 United States GM NIGMS NIH HHS; Z99 AR999999 United States ImNIH Intramural NIH HHS |
| فهرسة مساهمة: | Keywords: CARTILAGE; PEDIATRIC RHEUMATIC DISEASES; SELF-ASSESSMENT |
| تواريخ الأحداث: | Date Created: 20190503 Date Completed: 20201204 Latest Revision: 20210109 |
| رمز التحديث: | 20240628 |
| مُعرف محوري في PubMed: | PMC6824962 |
| DOI: | 10.3899/jrheum.181456 |
| PMID: | 31043550 |
| قاعدة البيانات: | MEDLINE |
| تدمد: | 0315-162X |
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| DOI: | 10.3899/jrheum.181456 |