title: The reporting and diagnosis of uterine fibroids in the UK: an observational study.
abstract: Uterine fibroids (UFs) are the most common benign tumour in women, and many undergo hysterectomy or uterus-preserving procedures (UPPs) to manage their symptoms. We aimed to validate the recording of UFs in a primary care database, The Health Improvement Network (THIN), and to determine the incidence of UFs in the UK.
  
  
  
  In this observational study, women in THIN aged 15-54 years between January 2000 and December 2009 with no previous record of UFs, hysterectomy or UPPs were identified. Individuals were followed up until there was a Read code indicating UFs, they reached 55 years of age or died, or the study ended. Among those without a UF code, women were identified with a code for hysterectomy, UPPs or heavy menstrual bleeding (HMB). Anonymized patient profiles from each category were randomly selected and reviewed. Subsequently, primary care physicians were asked to complete questionnaires to verify the diagnosis for a randomly selected subgroup.
  
  
  
  In total, 737,638 women were identified who met the initial inclusion criteria. The numbers of women with a code for UFs, hysterectomy, UPPs and HMB were 9380, 11,002, 3220 and 60,915, respectively; the proportions of confirmed cases of UFs were 88.8, 29.7, 57.7 and 15.9 %. The estimated number of women with UFs was 23,140 (64.0 % without a recorded UF diagnosis). The overall incidence of UFs was 5.8 per 1000 woman-years.
  
  
  
  UFs were confirmed in a high proportion of women with UF Read codes. However, almost two-thirds of cases were identified among women with a code for hysterectomy, UPPs or HMB. These results show that UFs are under-recorded in UK primary care, and suggest that primary care physicians tend to code the symptoms of UFs more often than the diagnosis.
authors.affiliation: Spanish Centre for Pharmacoepidemiologic Research (CEIFE), Madrid, Spain. elisaceife@gmail.com.
authors.forename: Elisa
authors.initials: E
authors.lastname: Martín-Merino
authors.affiliation: Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden.
authors.forename: Mari-Ann
authors.initials: MA
authors.lastname: Wallander
authors.affiliation: Global Epidemiology, Bayer Pharma AG, Berlin, Germany.
authors.forename: Susan
authors.initials: S
authors.lastname: Andersson
authors.affiliation: Global Epidemiology, Bayer Pharma AG, Berlin, Germany.
authors.forename: Montse
authors.initials: M
authors.lastname: Soriano-Gabarró
authors.affiliation: Spanish Centre for Pharmacoepidemiologic Research (CEIFE), Madrid, Spain.
authors.forename: Luis Alberto García
authors.initials: LA
authors.lastname: Rodríguez
mesh_terms: D000293:Adolescent; D000328:Adult; D015331:Cohort Studies; D005260:Female; D006801:Humans; D007044:Hysterectomy / Q000706:statistics & numerical data; D038801:International Classification of Diseases / Q000145:classification / Q000592:standards* / Q000706:statistics & numerical data; D007889:Leiomyoma / Q000150:complications / Q000175:diagnosis* / Q000601:surgery; D008875:Middle Aged; D012107:Research Design / Q000592:standards* / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: Incidence; Read codes; The health improvement network; Uterine fibroids; Validation