Assessing the usefulness and acceptability of a low health literacy online decision aid about reproductive choices for younger women with breast cancer: the aLLIAnCE pilot study protocol

Michelle Peate; Sian Karen Smith; Victoria Pye; Alice Hucker; Catharyn Stern; Lesley Stafford; Catherine Oakman; Laura Chin-Lenn; Kerry Shanahan; Nipuni Ratnayake Gamage; Martha Hickey

doi:10.1186/s40814-017-0144-9

Assessing the usefulness and acceptability of a low health literacy online decision aid about reproductive choices for younger women with breast cancer: the aLLIAnCE pilot study protocol

Pilot Feasibility Stud. 2017 Jun 7:3:31. doi: 10.1186/s40814-017-0144-9. eCollection 2017.

Authors

Affiliations

¹ Psychosocial Health and Wellbeing Research (emPoWeR) Unit, Department of Obstetrics & Gynaecology, University of Melbourne, Level 7, Royal Women' Hospital, 20 Flemington Road, Parkville, VIC 3052 Australia.
² Psychosocial Research Group, Prince of Wales Clinical School, Faculty of Medicine, UNSW, Lowy Research Centre C25, Level 4, Sydney, NSW 2052 Australia.
³ Australian Institute of Health Innovation, Macquarie University, Sydney, NSW 2109 Australia.
⁴ Endocrine and Metabolic Service and Reproductive Services, Royal Women's Hospital and Melbourne IVF, 20 Flemington Road, Parkville, VIC 3052 Australia.
⁵ Centre for Women's Mental Health, The Royal Women's Hospital, 20 Flemington Road, Parkville, VIC 3052 Australia.
⁶ Breast Service, Royal Melbourne and Royal Women's Hospitals, Parkville, VIC 3052 Australia.
⁷ Breast Service, Royal Melbourne Hospital, Parkville, VIC 3052 Australia.
⁸ Department of Obstetrics & Gynaecology, University of Melbourne, Level 7, Royal Women's Hospital, 20 Flemington Road, Parkville, VIC 3052 Australia.

Abstract

Background: Young women diagnosed with breast cancer may be confronted by many difficult decisions, especially around fertility preservation prior to commencing cancer treatment. The information to be conveyed is complex, and it may be difficult to weigh up the risks and benefits of the different fertility preservation options available. This complexity is compounded by the widespread low levels of literacy and health literacy in Australia, which may result in greater difficulties in understanding available health information and in decision-making.

Methods/design: A working group of experts have developed a fertility-related online decision aid for a low health literacy population, guided by health literacy principles. The decision aid will be pilot tested with 30 women diagnosed with early breast cancer between 5 years and 6 months previously. To be eligible, at the time of diagnosis, women must be between 18 and 40 years (inclusive), pre-menopausal, have no history of metastatic disease, have not completed their families, be able to give informed consent and have low health literacy. Participants will be asked to reflect back to the time in which they were diagnosed. Participants will complete a questionnaire before and after reviewing the decision aid to determine the feasibility, use and acceptability of the decision aid. The decision aid will be modified accordingly. Participants may also choose to review a previously developed (high literacy) decision aid and provide feedback in comparison to the low health literacy decision aid.

Discussion: This project represents the first study to develop an online fertility decision aid developed from low health literacy models in the context of breast cancer. It is anticipated that the low health literacy decision aid will be useful and acceptable to young women with low health literacy who have been diagnosed with breast cancer and that it will be preferred over the high literacy decision aid.

Trial registration: ACTRN12615001364561p.

Keywords: Breast cancer; Decision aid; Decision-making; Fertility; Fertility preservation; Low health literacy; Psychosocial issues; Unmet needs; Young women.