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

Abstract

BackgroundYoung 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/designA 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.DiscussionThis 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

Systematic review of fertility preservation patient decision aids for cancer patients

“…One study's quality score was poor (25%); however, this was likely due to the review nature of the study being inadequately appraised by the MMAT, and as such, it was retained for final analysis. Two studies were considered “ grey literature ” in the form of conference abstracts and could not be assessed on quality …”

“…Two studies were considered "grey literature" in the form of conference abstracts and could not be assessed on quality. 37,38 3 | RESULTS A total of 12 papers, from 11 studies, evaluating nine PtDAs were reviewed (see Table S1 for full study details and extracted data). The studies were published between 2009 and 2018 and originated from six countries.…”

Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan?

“…No clinical guidelines enabled cancer professionals to prepare women for fertility preservation decisions and/or service referral; guidance was to read quality standards and/or clinical guidelines for treating fertility problems [ 15 , 19 ]. As health professionals are not provided with guidance on enabling fertility preservation decisions in the context of cancer rather than infertility treatment, and relevant patient information is not easily accessible, these results explain in part why women with cancer feel simultaneously unsupported and overwhelmed by information at this time-pressured point in their treatment management [ 18 , 22 , 28 , 29 , 31 , 73 ].…”

“…A data extraction sheet (Additional file 1 ) was developed (HLB, NM) with reference to patient decision aid research reviews and resource development [ 2 , 7 , 8 , 10 , 35 , 52 – 54 , 69 , 70 ], and cancer-related fertility preservation decision aids [ 22 , 26 , 27 , 29 , 71 , 72 ]. The presence or absence of minimum standards and components know to support understanding of the health condition, decision problem, treatment options and their consequences, and reasoned decision making were extracted systematically from each resource meeting the scan’s inclusion criteria using the data extraction sheet.…”

“…Integrating relevant fertility preservation information into cancer pathways is essential for women to make informed decisions about whether to undergo fertility preservation, and/or which procedures to choose [ 15 , 18 – 25 ]. Receiving accurate and timely information is associated with reported better quality of life and reduced decisional regret, post cancer treatment [ 22 , 26 – 29 ]. However, women’s recall of discussions with health professionals and support about infertility-related side-effects of cancer treatment is low [ 18 , 30 , 31 ]; findings indicate variation in the timing, content, utility and quantity of information about fertility preservation provided by cancer services [ 18 , 31 – 33 ].…”