title: Health information exchange for patients with intellectual disabilities: a general practice perspective.
abstract: BACKGROUND
  Inadequate health information exchange (HIE) between patients with intellectual disabilities (ID), their carers, and GPs may lead to ineffective treatment and poor treatment compliance. Factors influencing HIE are largely unexplored in previous research.
  
  
  OBJECTIVE
  To provide insight into the perceived HIE facilitators of GPs and general practice assistants, and the barriers in GP consultations for patients with ID.
  
  
  METHODS
  An interview-based study with GPs (n = 19) and general practice assistants (n = 11) in the Netherlands.
  
  
  METHODS
  Semi-structured interviews were conducted on topics relating to stages during and around GP consultation. Transcripts were coded and analysed using framework analysis.
  
  
  RESULTS
  The main themes were impaired medical history taking and clinical decision making, and fragile patient follow-up. Factors negatively influencing HIE related to patient communication skills and professional carers' actions in preparing the consultation and in collecting, recording, and sharing information. HIE barriers resulted in risk of delay in diagnosis and treatment, misdiagnosis, unnecessary tests, and ineffective treatment regimens. HIE facilitators were described in terms of GP adjustments in communication, planning of consultations, and efforts to compensate for fragile follow-up situations.
  
  
  CONCLUSIONS
  Inadequate HIE should be seen as a chain of events leading to less effective consultations, substandard treatment, and insufficient patient follow-up. The results indicate a mismatch between GPs' expectations about professional carers' competencies, responsibilities, and roles in HIE and the setting in which professional carers operate. Further research should focus on how daily GP practice can be attuned to the practicalities of HIE with patients with ID and their professional carers.
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Mathilde
authors.initials: M
authors.lastname: Mastebroek
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Jenneken
authors.initials: J
authors.lastname: Naaldenberg
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Francine A
authors.initials: FA
authors.lastname: van den Driessen Mareeuw
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Geraline L
authors.initials: GL
authors.lastname: Leusink
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Antoine Lm
authors.initials: AL
authors.lastname: Lagro-Janssen
authors.affiliation: Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Henny Mj
authors.initials: HM
authors.lastname: van Schrojenstein Lantman-de Valk
mesh_terms: D001291:Attitude of Health Personnel; D005500:Follow-Up Studies; D058006:General Practice / Q000458:organization & administration*; D066275:Health Information Exchange; D057220:Health Literacy; D006801:Humans; D008607:Intellectual Disability / Q000150:complications; D010817:Physician-Patient Relations; D036301:Qualitative Research; D012017:Referral and Consultation
keywords: continuity of patient care; general practice; health communication; health information exchange/management; intellectual disability