Paediatric Rheumatology
Consumer perspective on healthcare services for juvenile idiopathic arthritis: results of a multicentre JIA inception cohort study
M. Heinrich-Rohr1, K. Moenkemoeller2, M. Niewerth3, C. Sengler4, I. Liedmann5, T. Kallinich6, G. Horneff7, D. Windschall8, J.-P. Haas9, F. Dressler10, I. Foeldvari11, F. Weller-Heinemann12, T. Hospach13, J. Kuemmerle-Deschner14, D. Foell15, J. Klotsche16, K. Minden17
- Center for chronically sick children Charité - Universitätsmedizin Berlin, and German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.
- Kinderkrankenhaus Amsterdamer Straße, Kliniken der Stadt Köln, Germany.
- German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.
- German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.
- German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.
- German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, and Department of Paediatric Pulmonology, Immunology, and Intensive Care Medicine, Charité - Universitätsmedizin Berlin, Germany.
- Department of Paediatrics, Centre for Paediatric Rheumatology, Asklepios Clinic Sankt Augustin, and Department of Paediatric and Adolescents Medicine, University Hospital of Cologne, Germany.
- Clinic of Paediatric Rheumatology, St. Josef-Stift Hospital, Sendenhorst, Germany.
- German Centre for Paediatric and Adolescent Rheumatology, Garmisch-Partenkirchen, Germany.
- Department of Paediatric Pneumology, Allergology and Neonatology, Children's Hospital, Medical School, Hanover, Germany.
- Hamburg Centre for Paediatric and Adolescent Rheumatology, Schön Klinik Hamburg Eilbek, Hamburg, Germany.
- Prof.-Hess-Kinderklinik, Bremen, Germany.
- Olgahospital Kinderklinik, Stuttgart, Germany.
- Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Tübingen, Germany.
- Department of Paediatric Rheumatology and Immunology, University of Münster, Germany.
- German Rheumatism Research Centre Berlin, a Leibniz Institute, Berlin, Germany.
- 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
CER14319
2021 Vol.39, N°6
PI 1432, PF 1439
Paediatric Rheumatology
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PMID: 33822700 [PubMed]
Received: 11/12/2020
Accepted : 17/02/2021
In Press: 30/03/2021
Published: 26/11/2021
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.
