title: The most important needs and preferences of patients for support from health care professionals: A reflective practice on (transitional) care for young adults with Juvenile Idiopathic Arthritis.
abstract: In this manuscript, presented as a Reflective Practice, the learning experiences and reflections of a healthcare team on redeveloping the transitional care for young adults with a juvenile rheumatic disease are described. In this process of redeveloping care, the healthcare team experienced that small step, driven by patient stories and involvement of patients in all phases from development to evaluation, led to meaningful results. The eHealth interventions, developed to support the transition and to increase self-management were found to be feasible and evaluated positively by the young adult group. But the healthcare team also experienced that the focus on the patient alone, is not enough to implement self-management interventions and sustain patient centered care in daily practice. How healthcare professionals personally think and feel about patient centered care is essential and needs to be discussed in daily care.It determines the way of being present with attention and commitment in daily health care. It affects the hands, head and heart. A daily reflection on shared answers of the patient and the health care professional to the question 'what is the most important to you?'may help to implement patient centered care in health practice.
authors.affiliation: University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, the Netherlands. Electronic address: j.ammerlaan@umcutrecht.nl.
authors.forename: Judy W
authors.initials: JW
authors.lastname: Ammerlaan
authors.affiliation: University Medical Center Utrecht, Department Dermatology/Allergology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, the Netherlands. Electronic address: h.vanosmedendorp@umcutrecht.nl.
authors.forename: Harmieke
authors.initials: H
authors.lastname: van Os-Medendorp
authors.affiliation: University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, the Netherlands. Electronic address: N.C.Nijhof@umcutrecht.nl.
authors.forename: Nienke C
authors.initials: NC
authors.lastname: de Boer-Nijhof
authors.affiliation: University Medical Center Utrecht, Department Pediatric Rheumatology, HPN KC.02.085.0, P.O. Box 85090, Utrecht 3508 AB, the Netherlands. Electronic address: b.prakken@umcutrecht.nl.
authors.forename: Berent
authors.initials: B
authors.lastname: Prakken
authors.affiliation: University Medical Center Utrecht, Department Rheumatology & Clinical Immunology, HPN F02.127, P.O. Box 85500, 3508 GA Utrecht, the Netherlands. Electronic address: j.w.j.bijlsma@umcutrecht.nl.
authors.forename: Johannes W J
authors.initials: JWJ
authors.lastname: Bijlsma
authors.affiliation: University Medical Center Utrecht, Department Rheumatology & Clinical Immunology, HPN F02.127, P.O. Box 85500, 3508 GA Utrecht, the Netherlands. Electronic address: a.kruize@umcutrecht.nl.
authors.forename: Aike A
authors.initials: AA
authors.lastname: Kruize
mesh_terms: D000328:Adult; D001171:Arthritis, Juvenile / Q000523:psychology / Q000628:therapy*; D003695:Delivery of Health Care; D006282:Health Personnel / Q000523:psychology*; D006301:Health Services Needs and Demand; D006801:Humans; D010348:Patient Care Team; D057240:Patient Preference; D018802:Patient-Centered Care; D060305:Transition to Adult Care / Q000458:organization & administration*; D055815:Young Adult
keywords: Developing; Healthcare; Needs; Patient-centered care; Preferences; Reflection; Self-management; Transitional; Values of health professionals; Young adults