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Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer

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Abstract

Adolescent and young adult (AYA) cancer patients under 40 should be made aware of their fertility risks and preservation options throughout their care. However, discussions on fertility preservation (FP) do not routinely occur. With a dearth of FP resources, oncology providers may lack knowledge around FP. Thus, informational needs can be unmet, leading to anxiety and distress in patients. Provision of pertinent and timely information can help patients cope better with their diagnosis. FP pamphlets were developed for men and women with cancer. A cross-sectional in-house survey, using convenience sampling, evaluated the pamphlets’ effectiveness and measured ease of understanding, acceptability, and perceived utility. Patients and partners were also asked to provide recommendations and complete the Short Test of Functional Health Literacy in Adults (S-TOFHLA) measuring health literacy level. This helps determine if health literacy influences perception of pamphlet effectiveness. All participants (n = 56) reviewed both pamphlets. Fifty-four participants (96 %) found the pamphlet for men useful, while 29 participants (52 %) improved their male fertility knowledge. The pamphlet for women was useful for 52 participants (93 %) and improved knowledge in 35 (63 %) of them. Although the majority of participants had adequate health literacy (98 %), there was insufficient sample diversity to determine if health literacy influenced the pamphlet’s effectiveness. Participants indicated preference in receiving verbal (73 %) and written (66 %) information over watching videos or in-class education. They recommended including fertility clinics, financial resources, and statistics in the brochures. These FP pamphlets were concluded as effective in supporting patients in making FP decisions.

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Authors and Affiliations

  1. Princess Margaret Cancer Centre, Adolescent and Young Adult Program, Schulich School of Medicine and Dentistry, University of Western Ontario, London, ON, Canada

    Seline Tam

  2. Princess Margaret Cancer Centre, Adolescent and Young Adult Program, College of Arts & Science, New York University, New York, NY, USA

    Natasha Puri

  3. Hospital for Sick Children, Biostatistics, Design & Analytics, Department of Public Health Sciences, University of Toronto, Toronto, ON, Canada

    Derek Stephens

  4. Princess Margaret Cancer Centre, Adolescent and Young Adult Program, Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada

    Laura Mitchell

  5. Radiation Medicine Program, Princess Margaret Cancer Centre, & Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada

    Meredith Giuliani

  6. Princess Margaret Cancer Centre, Oncology Patient and Family Education, Toronto, ON, Canada

    Janet Papadakos

  7. Princess Margaret Cancer Centre, Division of Medical Oncology, University of Toronto, Toronto, ON, Canada

    Abha A. Gupta

  8. Division of Hematology/Oncology, Department of Pediatrics, Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada

    Abha A. Gupta

Authors
  1. Seline Tam
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  2. Natasha Puri
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  3. Derek Stephens
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  4. Laura Mitchell
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  5. Meredith Giuliani
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  6. Janet Papadakos
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  7. Abha A. Gupta
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Corresponding author

Correspondence to Abha A. Gupta.

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This study was conducted with approval from the University Health Network Research Ethics Board (REB).

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Tam, S., Puri, N., Stephens, D. et al. Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer. J Canc Educ 33, 528–535 (2018). https://doi.org/10.1007/s13187-016-1108-0

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  • DOI: https://doi.org/10.1007/s13187-016-1108-0

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