Young people's satisfaction of transitional care in adolescent rheumatology in the UK

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

Shaw KL; Southwood TR; McDonagh JE; British Society of Paediatric; Adolescent Rheumatology

Child: Care, Health And Development

2007

Child; Female; Humans; Male; Cohort Studies; Great Britain; Adult; Parents; Questionnaires; Program Development; Patient Satisfaction; Sickness Impact Profile; quality of life; adolescent; Arthritis; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Juvenile Rheumatoid/psychology/rehabilitation; Self Care/methods

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK rheumatology centres. Satisfaction with health-care delivery was measured prior to, and 12 months after, the implementation of a structured and co-ordinated programme of transitional care using self-completed questionnaires designed for this study. RESULTS: Of 359 families invited to participate, 308 (86%) adolescents with JIA and 303 (84%) parents/guardians accepted. A fifth of adolescents had persistent oligoarthritis. Median age was 14.2 (11-18) years with median disease duration of 5.7 (0-16) years. Young people and their parents rated provider characteristics more important than aspects of the physical environment or process issues. Staff honesty and knowledge were rated as the most essential aspects of best practice. Prior to implementing the programme of transitional care, parents rated service delivery for all items significantly worse than best practice. Overall satisfaction improved 12 months after entering the programme. However, while parent satisfaction improved for 70.4% of items, significant improvements were only observed for three (13.6%) items rated by adolescents. CONCLUSION: The perceived quality of health care for young people with JIA and their parents was significantly lower than what they would like. Satisfaction with many aspects of care during transition from paediatric to adult services can be improved through the implementation of a structured, co-ordinated programme of transitional care.

2007

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Journal Article

Backlog