title: Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial.
abstract: BACKGROUND
  Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services.
  
  
  METHODS
  A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families' organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP.
  
  
  CONCLUSIONS
  Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.
  
  
  BACKGROUND
  ClinicalTrials.gov Identifier: NCT00519311.
authors.affiliation: Queensland Centre for Intellectual and Developmental Disability, The University of Queensland, Mater Hospital, Raymond Terrace, South Brisbane, Qld 4101, Australia. n.lennox@uq.edu.au
authors.forename: Nicholas
authors.initials: N
authors.lastname: Lennox
authors.forename: Robert
authors.initials: R
authors.lastname: Ware
authors.forename: Suzanne
authors.initials: S
authors.lastname: Carrington
authors.forename: Michael
authors.initials: M
authors.lastname: O'Callaghan
authors.forename: Gail
authors.initials: G
authors.lastname: Williams
authors.forename: Lyn
authors.initials: L
authors.lastname: McPherson
authors.forename: Chris
authors.initials: C
authors.lastname: Bain
mesh_terms: D000293:Adolescent; D002648:Child; D016000:Cluster Analysis; D003142:Communication; D003479:Curriculum; D005500:Follow-Up Studies; D058005:General Practitioners; D006293:Health Promotion / Q000379:methods*; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D010287:Parent-Child Relations; D010817:Physician-Patient Relations; D010865:Pilot Projects; D015397:Program Evaluation; D036301:Qualitative Research; D011793:Queensland; D012107:Research Design; D012572:School Health Services / Q000458:organization & administration*