title: Use of a cancer registry is preferable to a direct-to-community approach for recruitment to a cohort study of wellbeing in women newly diagnosed with invasive breast cancer.
abstract: BACKGROUND
  Breast cancer (BC) mortality is declining such that the number of survivors of BC in the community is increasing. BC survivors report a range of sequelae from their cancer and its management beyond the period of their immediate treatment. Previous studies to document these have generally been small, clinic-based or commenced years after diagnosis. We have recruited a large cohort of women newly diagnosed with invasive BC from the community who will be followed for five years in order to systematically document the physical, psychological and socio-economic consequences of BC and its treatment. The aim of this manuscript is to describe the issues encountered in the recruitment of this community-based study population.
  
  
  METHODS
  Women residing in the southern Australian state of Victoria newly diagnosed with invasive BC were recruited to this cohort study using two approaches: directly from the community using an advertising campaign and contemporaneously using an invitation to participate from the Victorian Cancer Registry (VCR).
  
  
  RESULTS
  Over the two and half year recruitment period, 2135 women were recruited and agreed to receive the enrollment questionnaire (EQ). Of these, 1684 women were eligible and completed an EQ, with the majority of participants having been recruited through the VCR (n = 1321). Only 16% of women contacted by the VCR actively refused participation following a letter of invitation and phone follow-up. The age distribution and tumour characteristics of participants are consistent with state-wide data and their residential postcodes include 400 of a possible 699. Recruitment through a direct community awareness program aimed at women with newly diagnosed invasive BC was difficult, labour-intensive and expensive. Barriers to the recruitment process were identified.
  
  
  CONCLUSIONS
  Most of the women in this study were recruited through a state-based cancer registry. Limitations to recruitment occurred because we required questionnaires to be completed within 12 months of diagnosis in a setting where there is several months delay in notification of new cases to the Registry. Characteristics of the cohort suggest that it is generally representative of women in the state of Victoria newly diagnosed with BC.
authors.affiliation: Women's Health Program, Department of Medicine, Monash University, Alfred Hospital, Prahran, Victoria 3181, Australia. Marijana.Lijovic@med.monash.edu.au
authors.forename: Marijana
authors.initials: M
authors.lastname: Lijovic
authors.forename: Susan R
authors.initials: SR
authors.lastname: Davis
authors.forename: Pam
authors.initials: P
authors.lastname: Fradkin
authors.forename: Maria
authors.initials: M
authors.lastname: La China
authors.forename: Helen
authors.initials: H
authors.lastname: Farrugia
authors.forename: Rory
authors.initials: R
authors.lastname: Wolfe
authors.forename: Robin J
authors.initials: RJ
authors.lastname: Bell
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001943:Breast Neoplasms / Q000453:epidemiology* / Q000473:pathology; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008875:Middle Aged; D009361:Neoplasm Invasiveness; D018579:Patient Selection; D012042:Registries; D054063:Superior Sagittal Sinus; D011795:Surveys and Questionnaires; D014739:Victoria / Q000453:epidemiology