title: Paediatric multiple sclerosis: a qualitative study of families' diagnosis experiences.
abstract: OBJECTIVE
  To examine children's and parents' experiences of obtaining a diagnosis of paediatric multiple sclerosis (MS) and identify potential facilitators and barriers to early diagnosis.
  
  
  METHODS
  Qualitative, semi-structured interviews conducted face-to-face in home settings with 31 parents and 21 children and adolescents (8-17 years old) with a clinical diagnosis of MS. Participants were recruited from 16 NHS Trusts and four MS voluntary organisations in the UK. Interviews were recorded and transcribed verbatim and analysed using the constant comparative method.
  
  
  RESULTS
  Time to diagnosis ranged from 1 to 96 months (median 11.5, mean 23.3, SD 27.3). The findings suggest that delayed presentation to healthcare services, generalists' assumptions about the nature of reported symptoms, lack of awareness of paediatric MS and delayed referral to specialists in paediatric MS were barriers to early investigation and accurate diagnosis. Children, adolescents and parents felt that their concerns about the child's health were not always taken seriously during medical consultations and that clinicians could be reluctant to diagnose MS in childhood. This created additional uncertainty about the child's condition and long-term prognosis.
  
  
  CONCLUSIONS
  Obtaining a diagnosis of paediatric MS can be a challenging and lengthy process with potentially adverse implications for the health of children/adolescents. Valuing families' knowledge and experience of their child's health, performing a thorough medical examination early in the disease course and organising prompt referrals may aid the early investigation and diagnosis of this disease. In view of the diagnostic challenges, children/adolescents with suspected MS would benefit from early referrals to specialists in paediatric MS.
authors.affiliation: University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, UK.
authors.forename: Denise
authors.identifier: http://orcid.org/0000-0002-0024-2021
authors.initials: D
authors.lastname: Hinton
authors.affiliation: University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Kirk
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D002983:Clinical Competence; D003142:Communication; D042241:Early Diagnosis; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D009103:Multiple Sclerosis / Q000175:diagnosis* / Q000523:psychology; D011368:Professional-Family Relations; D036301:Qualitative Research; D014342:Truth Disclosure; D006113:United Kingdom
keywords: adolescents; children; diagnosis; paediatric multiple sclerosis; parents