title: Why do women not return family history forms when referred to breast cancer genetics services? A mixed-method study.
abstract: BACKGROUND
  Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre-requisite for a clinic appointment.
  
  
  OBJECTIVE
  To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non-return of the forms.
  
  
  METHODS
  Based on a single regional 'breast cancer family' service in the UK, Analysis of quantitative data comparing women who did not return forms (n = 55) with those who had done so (n = 59), together with qualitative evaluation of potential barriers to form-completion through semi-structured telephone interviews with a random subset of 'non-returners' (n = 23).
  
  
  RESULTS
  Non-returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non-returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non-compliance. Twenty-one participants confirmed that they would welcome an appointment at a 'breast cancer family' clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk.
  
  
  CONCLUSIONS
  Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Kirstie A
authors.initials: KA
authors.lastname: Hanning
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Michael
authors.initials: M
authors.lastname: Steel
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: David
authors.initials: D
authors.lastname: Goudie
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Lorna
authors.initials: L
authors.lastname: McLeish
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Jackie
authors.initials: J
authors.lastname: Dunlop
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Myring
authors.affiliation: Population Health Sciences, School of Medicine, University of Dundee, Dundee, UK.
authors.forename: Frank
authors.initials: F
authors.lastname: Sullivan
authors.affiliation: Department of Clinical Genetics and Tayside Familial Breast/Ovarian Cancer Service, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Berg
authors.affiliation: School of Medicine, University of St Andrews, St Andrews, UK.
authors.forename: Gerry
authors.initials: G
authors.lastname: Humphris
authors.affiliation: School of Medicine, University of St Andrews, St Andrews, UK.
authors.forename: Gozde
authors.initials: G
authors.lastname: Ozakinci
mesh_terms: D000328:Adult; D000367:Age Factors; D000554:Ambulatory Care Facilities; D001943:Breast Neoplasms / Q000235:genetics*; D005192:Family Health; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008875:Middle Aged; D010349:Patient Compliance; D010375:Pedigree; D012017:Referral and Consultation; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: breast cancer; cancer genetics; family history of cancer; genetic counselling