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

Research output: Contribution to journalArticle

6 Citations (Scopus)

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.

Original languageEnglish
Article number31
JournalPilot and Feasibility Studies
Volume3
Issue number1
Early online date7 Jun 2017
DOIs
Publication statusPublished - 20 Dec 2017

Keywords

  • Breast cancer
  • Decision aid
  • Decision-making
  • Fertility
  • Fertility preservation
  • Low health literacy
  • Psychosocial issues
  • Unmet needs
  • Young women

ASJC Scopus subject areas

  • Medicine (miscellaneous)

Cite this

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

In: Pilot and Feasibility Studies, Vol. 3, No. 1, 31, 20.12.2017.

Research output: Contribution to journalArticle

Peate, Michelle ; Smith, Sian Karen ; Pye, Victoria ; Hucker, Alice ; Stern, Catharyn ; Stafford, Lesley ; Oakman, Catherine ; Chin-Lenn, Laura ; Shanahan, Kerry ; Ratnayake Gamage, Nipuni ; Hickey, Martha. / 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. In: Pilot and Feasibility Studies. 2017 ; Vol. 3, No. 1.
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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.",
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AU - Pye, Victoria

AU - Hucker, Alice

AU - Stern, Catharyn

AU - Stafford, Lesley

AU - Oakman, Catherine

AU - Chin-Lenn, Laura

AU - Shanahan, Kerry

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AB - 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.

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