Adolescent health care is, by definition, multidisciplinary and interagency. It involves professionals in primary and secondary health care, education and vocational services, social services, and the voluntary sector. Key players in adolescent rheumatology are listed in Table 5.
Provider characteristics have been reported to be the main predictor of satisfaction with health care by adolescents with and without chronic illness (38,43). Several behavioral factors amenable to training have been reported by young people with a range of chronic illnesses including JIA (38). The limited opportunities for formal adolescent health training in some countries remain a concern. (6). Significant unmet educational, and training needs among rheumatology professionals in the United Kingdom has been reported, reflecting this lack of training (44). Of concern, although professionals knowledgeable in transitional care—an important component of adolescent rheumatology management—was considered best practice by users and providers alike, but is considered feasible in only a few hospitals in the United Kingdom (45). It is reassuring that training, when available, makes a difference. In a randomized controlled trial of adolescent health training in primary care, large sustainable improvements in knowledge, skill, and self-perceived competency were reported in the short term (46). At 5-year follow-up, scores were all significantly higher than at baseline, with improvements sustained between 12 months and five years, with 54% of doctors receiving further training in the interim (47,48) Other reported positive outcomes of training include higher rates of desired clinical practices, for example, confidentiality, screening (46,49-51), greater number of adolescents seen, and a greater tendency to engage in continuing education in adolescent health (52).
The coordination of all these individuals is demanding and challenging but vital for quality care provision at this important stage of development In pediatric care, such coordination has been reported to increase parent
Table 5 Key Players in Adolescent Rheumatology Health Care Provision
The adolescent The young person him- or herself Parents/caregivers Siblings
Friends and peers Health-care providers Primary health-care provider/general practitioner School nurse Community pediatrician Adult rheumatologist (in late adolescence) Endocrinologist Ophthalmologist Orthopedic surgeons
Other specialties, e.g., renal, dermatology (SLE) Occupational therapist Physiotherapist Psychologist Social services Social worker Youth services Youth worker Local youth groups Education/vocation School teachers School counselors Careers advisors
Abbreviation: SLE, systemic lupus erythematosus.
satisfaction, as reported by the Pediatric Alliance for Coordinated Care (53). Other studies have supported a role for a key worker in chronic illness management (3,4,54-56). The size of the adolescent health team, even if virtual, creates very real demands on interprofessional communication. The challenges of translating policy into clinical practice has been highlighted in various audits, including limited documentation of adolescent health issues in rheumatology case notes (57), limited transition plans for both outpatients (57,58) and inpatients (59), and the lack of development of a written transition policy in centers participating in a controlled trial of a transitional care program (57).
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