title: Exploring the healthcare journey of patients with rheumatoid arthritis: a mapping project - implications for practice.
abstract: OBJECTIVE
  Consumers of healthcare can reveal important insights into the personal challenges they experience when negotiating their health needs. The National Rheumatoid Arthritis Society (NRAS) wanted to explore the experiences of those with rheumatoid arthritis (RA) in order to understand the impact on the individual and on healthcare resources and benchmark care against published standards and guidelines.
  
  
  METHODS
  A project was designed to explore the experiences of individuals with sero-positive RA who had been diagnosed for three years or less. Qualitative semi-structured interviews were used and combined with process mapping to explore the experiences of a purposeful sample of individuals with RA. The information generated was mapped and variances explored. Ethical approval was not required as the data were collected outside the National Health Service.
  
  
  RESULTS
  Twenty-two participants' stories were mapped. Fifty per cent of participants sought a medical opinion within three weeks of symptom onset and the majority received a disease-modifying anti-rheumatic drug within six months from first presenting symptoms. Work-related issues were highlighted by 13 participants, and seven of these experienced job losses directly attributed to their diagnosis.
  
  
  CONCLUSIONS
  This unique mapping approach used qualitative research and process mapping to compare patient experiences against recognized standards and guidelines. These twenty-two stories reveal important insights into the challenges experienced in negotiating these healthcare journeys and the impact upon the individual as a result of variances in standards of care received. The participants in this study were chiefly self-motivated, informed and articulate, and did not reflect the broad ethnic, social or cultural diversity in the UK. Limitations must also be considered in relation to perceptions and recall of participants over a three-year period, as these may have altered over time and illness experience.
authors.affiliation: Litchdon Medical Centre, Devon, UK. sue@susanoliver.com
authors.forename: Susan
authors.initials: S
authors.lastname: Oliver
authors.forename: Ailsa
authors.initials: A
authors.lastname: Bosworth
authors.forename: Mara
authors.initials: M
authors.lastname: Airoldi
authors.forename: Helen
authors.initials: H
authors.lastname: Bunyan
authors.forename: Audrey
authors.initials: A
authors.lastname: Callum
authors.forename: John
authors.initials: J
authors.lastname: Dixon
authors.forename: Diane
authors.initials: D
authors.lastname: Home
authors.forename: Ivan
authors.initials: I
authors.lastname: Lax
authors.forename: Anne
authors.initials: A
authors.lastname: O'Brien
authors.forename: Anthony
authors.initials: A
authors.lastname: Redmond
authors.forename: Sarah
authors.initials: S
authors.lastname: Ryan
authors.forename: D G I
authors.initials: DG
authors.lastname: Scott
authors.forename: Alan
authors.initials: A
authors.lastname: Steuer
authors.forename: Lorraine
authors.initials: L
authors.lastname: Tanner
mesh_terms: D000328:Adult; D000368:Aged; D001172:Arthritis, Rheumatoid / Q000451:nursing / Q000503:physiopathology* / Q000628:therapy*; D004651:Employment; D005260:Female; D006297:Health Services Accessibility; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic; D012219:Rheumatology; D012944:Social Support