title: Treating childhood intermittent distance exotropia: a qualitative study of decision making.
abstract: BACKGROUND
  Engaging patients (parents/families) in treatment decisions is increasingly recognised as important and beneficial. Yet where the evidence base for treatment options is limited, as with intermittent distance exotropia (X(T)), this presents a challenge for families and clinicians. The purpose of this study was to explore how decisions are made in the management and treatment of X(T) and what can be done to support decision-making for clinicians, parents and children.
  
  
  METHODS
  This was a qualitative study using face to face interviews with consultant ophthalmologists and orthoptists, and parents of children with X(T). Interview data were analysed using the constant comparative method.
  
  
  RESULTS
  The drivers for clinicians in treatment decision-making for X(T) were the proportion of time the strabismus is manifest and parents' views. For parents, decisions were influenced by: fear of bullying and, to a lesser degree, concerns around the impact of the strabismus on their child's vision. Uncertainty around the effectiveness of treatment options caused difficulties for some clinicians when communicating with parents. Parental understanding of the nature of X(T) and rationale for treatment often differed from that of the clinicians, and this affected their involvement in decision-making. Though there were good examples of shared decision-making and parent and child engagement some parents said the process felt rushed and they felt excluded. Parents reported that clinicians provided sufficient information in consultations but they had difficulties in retaining verbal information to convey to other family members.
  
  
  CONCLUSIONS
  Overall parents were happy with the care their child received but there is scope for better parent and (where appropriate) child engagement in decision-making. There was an expressed need for written information about X(T) to reinforce what was given verbally in consultations and to share with other family members. Access could be via the hospital website, along with videos or blogs from parents and children who have undergone the various management options. A method of assisting clinicians to explain the treatment options, together with the uncertainties, in a clear and concise way could be of particular benefit to orthoptists who have the most regular contact with parents and children, and are more likely to suggest conservative treatments such as occlusion and minus lenses.
authors: Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle upon Tyne, NE2 4AX, UK. jan.lecouturier@newcastle.ac.uk.
authors: Jan
authors: J
authors: Lecouturier
authors: Newcastle Eye Centre, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, UK. m.p.clarke@newcastle.ac.uk.
authors: Michael P
authors: MP
authors: Clarke
authors: Faculty of Medicine & Health Sciences, University of Nottingham, Queen's Medical Centre, Nottingham, NG7 2UH, UK. ntxge1@nottingham.ac.uk.
authors: Gail
authors: G
authors: Errington
authors: Centre for Population Health Sciences, Medical School, The University of Edinburgh, Teviot Place, Edinburgh, EH8 9AG, UK. nina.hallowell@ed.ac.uk.
authors: Nina
authors: N
authors: Hallowell
authors: School of Social and Community Medicine, University of Bristol, Oakfield House, Oakfield Grove, Clifton, Bristol, BS8 2BN, UK. madeleine.murtagh@bristol.ac.uk.
authors: Madeleine J
authors: MJ
authors: Murtagh
authors: Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle upon Tyne, NE2 4AX, UK. richard.thomson@newcastle.ac.uk.
authors: Richard
authors: R
authors: Thomson
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D000066491:Clinical Decision-Making; D005099:Exotropia / Q000503:physiopathology / Q000601:surgery*; D005260:Female; D006801:Humans; D008297:Male; D009801:Oculomotor Muscles / Q000503:physiopathology / Q000601:surgery*; D013508:Ophthalmologic Surgical Procedures; D009885:Ophthalmology; D009988:Orthoptics; D010290:Parents / Q000523:psychology; D010348:Patient Care Team; D010820:Physicians / Q000523:psychology; D015348:Vision, Binocular / Q000502:physiology