Patient's experiences with the care for juvenile idiopathic arthritis across Europe

Autor: Tsipi Egert, E H Pieter van Dijkhuizen, Silvia Scala, Sebastiaan J. Vastert, Wendy Costello, Ingrid Rotstein-Grein, Yona Egert, Casper Schoemaker, Marlous J Fernhout, Mirjam Kepic, Nico M Wulffraat, Alberto Martini
Jazyk: angličtina
Rok vydání: 2018
Předmět:
Male
Parents
Health Knowledge
Attitudes
Practice
lcsh:Diseases of the musculoskeletal system
medicine.medical_treatment
Juvenile
Disease
Care
Pediatrics
0302 clinical medicine
Surveys and Questionnaires
Health care
Immunology and Allergy
Pediatric rheumatology
030212 general & internal medicine
Child
Referral and Consultation
Practice
Rehabilitation
Chickenpox
Health Knowledge
lcsh:RJ1-570
Perinatology
Europe
and Child Health
Patient Satisfaction
Child
Preschool
Female
Shingles
Research Article
medicine.medical_specialty
Referral
Adolescent
03 medical and health sciences
Patient Education as Topic
Rheumatology
Internal medicine
Physicians
medicine
Humans
Pediatrics
Perinatology
and Child Health
Patient participation
Preschool
Quality of Health Care
030203 arthritis & rheumatology
Physician-Patient Relations
business.industry
Arthritis
lcsh:Pediatrics
medicine.disease
Arthritis
Juvenile
Family medicine
Attitudes
Pediatrics
Perinatology and Child Health
lcsh:RC925-935
business
Zdroj: Pediatric Rheumatology Online Journal
Pediatric Rheumatology Online Journal, Vol 16, Iss 1, Pp 1-8 (2018)
Pediatric Rheumatology, 16(1), 10. BioMed Central
ISSN: 1546-0096
Popis: Background To assess the views of juvenile idiopathic arthritis (JIA) patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe. Methods In a collaboration between physicians and patient associations, a questionnaire was developed, covering various domains of JIA care, including demographics, diagnosis, referrals to various health care professionals, access to pain and fatigue management and support groups, information they received about the disease and awareness of and participation in research. The questionnaire was translated and distributed by parent associations and pediatric rheumatologists in 25 countries, 22 of which were European. After completion the replies were entered on the PRINTO website. Replies could either be entered directly by parents on the website or on paper. In these cases, the replies were scanned and emailed by local hospital staff to Utrecht where they were entered by I.R. in the database. Results The survey was completed by 622 parents in 23 countries. The majority (66.7%) of patients were female, with median age 10–11 years at the completion of the questionnaire. Frequencies of self-reported JIA categories corresponded to literature. Some patients had never been referred to the ophthalmologist (22.8%) or physiotherapist (31.7%). Low rates of referral or access to fatigue (3.5%) or pain management teams (10.0%), age appropriate disease education (11.3%), special rehabilitation (13.7%) and support groups (20.1%) were observed. Many patients indicated they did not have contact details for urgent advice (35.9%) and did not receive information about immunizations (43.2%), research (55.6%) existence of transition of care clinics (89,2%) or financial support (89.7%). While on immunosuppressive drugs, about one half of patients did not receive information about immunizations, travelling, possible infections or how to deal with chickenpox or shingles. Conclusions Low rates of referral to health care professionals may be due to children whose illness is well managed and who do not need additional support or information. Improvements are needed, especially in the areas of supportive care and information patients receive. It is also important to improve doctor patient communication between visits. Physicians can be instrumental in the setting up of support groups and increasing patients’ awareness of existing support. Suggestions are given to convey crucial pieces of information structurally and repeatedly to ensure, among other things, compliance. Electronic supplementary material The online version of this article (10.1186/s12969-018-0226-0) contains supplementary material, which is available to authorized users.
Databáze: OpenAIRE
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