title: 'You are just left to get on with it': qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis.
abstract: OBJECTIVE
  Although the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS.
  
  
  METHODS
  Semistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis.
  
  
  METHODS
  South East Wales, UK.
  
  
  METHODS
  20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups.
  
  
  RESULTS
  Four main themes around disease progression were identified. 'Realisation' describes how patients came to understand they had SPMS while 'reaction' describes their response to this realisation. The 'realities' of living with SPMS, including dealing with the healthcare system during this period, were described along with 'future challenges' envisaged by patients and carers.
  
  
  CONCLUSIONS
  Awareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.
authors.affiliation: Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors.forename: F
authors.initials: F
authors.lastname: Davies
authors.affiliation: Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors.forename: A
authors.initials: A
authors.lastname: Edwards
authors.affiliation: Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors.forename: K
authors.initials: K
authors.lastname: Brain
authors.affiliation: School of Human Sciences, Swansea University, Swansea, UK.
authors.forename: M
authors.initials: M
authors.lastname: Edwards
authors.affiliation: Department of Neurology, University Hospital of Wales, Cardiff, UK.
authors.forename: R
authors.initials: R
authors.lastname: Jones
authors.affiliation: Department of Neurology, University Hospital of Wales, Cardiff, UK.
authors.forename: R
authors.initials: R
authors.lastname: Wallbank
authors.affiliation: Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK.
authors.forename: N P
authors.initials: NP
authors.lastname: Robertson
authors.affiliation: Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors.forename: F
authors.initials: F
authors.lastname: Wood
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D018450:Disease Progression; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D020528:Multiple Sclerosis, Chronic Progressive / Q000523:psychology*; D036301:Qualitative Research; D014852:Wales
keywords: QUALITATIVE RESEARCH; REHABILITATION MEDICINE