Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study VL Peddie, a MA Porter, b R Barbour, c D Culligan, d G MacDonald, e D King, f J Horn, d S Bhattacharya a a Division of Applied Health Sciences, Department of Obstetrics and Gynaecology, School of Medicine and Dentistry, University of Aberdeen, Aberdeen, UK b Division of Medical and Dental Education, University of Aberdeen, Aberdeen, UK c Department of Public Health and Primary Care, University of Dundee, Dundee, UK d Department of Haematology, Anchor Unit, Aberdeen Royal Infirmary, NHS Grampian, Aberdeen, UK e Department of Oncology, Anchor Unit, Aberdeen Royal Infirmary, NHS Grampian, Aberdeen, UK f Royal Aberdeen Children’s Hospital, NHS Grampian, Aberdeen, UK Correspondence: V Peddie, Division of Applied Health Sciences, Obstetrics and Gynaecology, School of Medicine and Dentistry, Division of Applied Health Sciences, University of Aberdeen, Aberdeen Maternity Hospital, Cornhill Road, Aberdeen AB25 2ZD, UK. Email v.peddie@abdn.ac.uk Accepted 6 February 2012. Published Online 30 May 2012. Objective To increase our understanding of factors underlying the decision to store gametes after the diagnosis of cancer. Design Qualitative interview study. Setting Andrology, Haematology, and Oncology Departments of a Scottish teaching hospital, and patients’ own homes. Population Sixteen men and 18 women aged 17–49 years recently diagnosed with cancer; 15 health professionals concerned in cancer care. Methods Audio-recorded semi-structured interviews were transcribed verbatim and analysed thematically. Topics included perceptions of diagnosis; prognosis; future reproductive choices; priorities; quality of information received; communication and decisions made about future reproductive choices; and the role of partners, family, friends and healthcare professionals. Professional interviews examined their role in decision making and that of protocols and guidelines, together with information emerging from patient interview analysis. Main outcome measure Themes identified following analysis of interview transcripts. Results The primary barriers to pursuing fertility preservation were the way in which information was provided and the ‘urgent need for treatment’ conveyed by staff. Survival was always viewed as paramount, with future fertility secondary. Sperm banking was viewed as ‘part and parcel’ of oncology care, and the majority of men quickly stored sperm as ‘insurance’ against future infertility. Few women were afforded the opportunity to discuss their options, reflecting clinicians’ reservations about the experimental nature of egg and ovarian tissue cryopreservation, and the need for partner involvement in embryo storage. Conclusions Significant gaps in the information provided to young women diagnosed with cancer suggest the need for an early appointment with a fertility expert. Keywords Cancer, fertility preservation, qualitative. Please cite this paper as: Peddie V, Porter M, Barbour R, Culligan D, MacDonald G, King D, Horn J, Bhattacharya S. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG 2012;119:1049–1057. Introduction Most young people expect to have children in the future, 1 but infertility can be a ‘devastating side-effect’ of cancer treatment 2 leading to reduced quality of life. 3–5 A rising incidence of cancer in people of reproductive age, com- bined with improvements in long-term survival, means that many of those affected may benefit from safeguarding their reproductive future. It has been widely argued that at the time of diagnosis, people with cancer should be provided with accurate information about the potential risk of impaired fertility after treatment for cancer irre- spective of whether local facilities for gamete cryopreserva- tion exist. 6–11 However, in reality, the immediate emphasis is often on treatment, with little time available to discuss future fertility or options for fertility preservation. 9 There may be overriding medical reasons for proceeding with urgent cancer treatment, but some people may be unaware ª 2012 The Authors BJOG An International Journal of Obstetrics and Gynaecology ª 2012 RCOG 1049 DOI: 10.1111/j.1471-0528.2012.03368.x www.bjog.org Fertility and assisted reproduction