Consumer perspective on healthcare services for juvenile idiopathic arthritis: results of a multicentre JIA inception cohort study.
| Title: | Consumer perspective on healthcare services for juvenile idiopathic arthritis: results of a multicentre JIA inception cohort study. |
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| Authors: | Heinrich-Rohr M; Center for chronically sick children Charité - Universitätsmedizin Berlin, and German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.; Moenkemoeller K; Kinderkrankenhaus Amsterdamer Straße, Kliniken der Stadt Köln, Germany.; Niewerth M; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.; Sengler C; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.; Liedmann I; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.; Kallinich T; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, and Department of Paediatric Pulmonology, Immunology, and Intensive Care Medicine, Charité - Universitätsmedizin Berlin, Germany.; Horneff G; Department of Paediatrics, Centre for Paediatric Rheumatology, Asklepios Clinic Sankt Augustin, and Department of Paediatric and Adolescents Medicine, University Hospital of Cologne, Germany.; Windschall D; Clinic of Paediatric Rheumatology, St. Josef-Stift Hospital, Sendenhorst, Germany.; Haas JP; German Centre for Paediatric and Adolescent Rheumatology, Garmisch-Partenkirchen, Germany.; Dressler F; Department of Paediatric Pneumology, Allergology and Neonatology, Children's Hospital, Medical School, Hanover, Germany.; Foeldvari I; Hamburg Centre for Paediatric and Adolescent Rheumatology, Schön Klinik Hamburg Eilbek, Hamburg, Germany.; Weller-Heinemann F; Prof.-Hess-Kinderklinik, Bremen, Germany.; Hospach T; Olgahospital Kinderklinik, Stuttgart, Germany.; Kuemmerle-Deschner J; Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Tübingen, Germany.; Foell D; Department of Paediatric Rheumatology and Immunology, University of Münster, Germany.; Klotsche J; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.; Minden K; German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, and Department of Paediatric Pulmonology, Immunology, and Intensive Care Medicine, Charité - Universitätsmedizin Berlin, Germany. minden@drfz.de. |
| Source: | Clinical and experimental rheumatology [Clin Exp Rheumatol] 2021 Nov-Dec; Vol. 39 (6), pp. 1432-1439. Date of Electronic Publication: 2021 Mar 30. |
| Publication Type: | Journal Article; Multicenter Study |
| Language: | English |
| Journal Info: | Publisher: Clinical And Experimental Rheumatology S.A.S Country of Publication: Italy NLM ID: 8308521 Publication Model: Print-Electronic Cited Medium: Print ISSN: 0392-856X (Print) Linking ISSN: 0392856X NLM ISO Abbreviation: Clin Exp Rheumatol Subsets: MEDLINE |
| Imprint Name(s): | Publication: Pisa : Clinical And Experimental Rheumatology S.A.S; Original Publication: Pisa, Italy : Pacini editore, [1983- |
| MeSH Terms: | Arthritis, Juvenile*/diagnosis ; Arthritis, Juvenile*/epidemiology ; Arthritis, Juvenile*/therapy; Child ; Cohort Studies ; Delivery of Health Care ; Humans ; Parents ; Quality of Life ; Surveys and Questionnaires |
| Abstract: | Objectives: To evaluate healthcare services for patients with juvenile idiopathic arthritis (JIA) from the parent-proxy perspective and to identify factors associated with perceived deficits in care.; Methods: Patients with JIA from 11 paediatric rheumatology units were enrolled in an inception cohort within the first 12 months after diagnosis. Healthcare services were assessed using The Child Healthcare Questionnaire on satisfaction, utilisation and needs. Factors associated with deficits in care were identified by logistic regression analysis.; Results: Data from parents of 835 JIA-patients were included in the analysis. At the assessment (4.7 months after diagnosis), 85% of the patients received drug treatment, and 50% had received multi-professional care. The most frequently used services were physiotherapy (84%), occupational therapy (23%), and telephone counselling (17%). Almost one-third of families reported that they had not received the services that they needed, with health education being the most frequently reported need. Most parents (93%) were satisfied with the overall healthcare provided for their children, especially regarding doctors' behaviour. However, approximately 1 in 3 consumers were dissatisfied with the time to JIA diagnosis and the school services. The lower the child's quality of life, the higher the chance was that the child and the family received multi-professional care, perceived unmet needs, and were dissatisfied with care.; Conclusions: According to parents' experience and satisfaction with their child's care, performance at the system level can be further improved by diagnosing JIA earlier, providing additional information at disease onset, and ensuring that the child's social environment is taken into account. |
| Entry Date(s): | Date Created: 20210406 Date Completed: 20211130 Latest Revision: 20220706 |
| Update Code: | 20260130 |
| DOI: | 10.55563/clinexprheumatol/nzsv4g |
| PMID: | 33822700 |
| Database: | MEDLINE |
Journal Article; Multicenter Study