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.
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.
Princess Margaret Cancer Centre, Adolescent and Young Adult Program, Schulich School of Medicine and Dentistry, University of Western Ontario, London, ON, Canada.
Seline
S
Tam
Princess Margaret Cancer Centre, Adolescent and Young Adult Program, College of Arts & Science, New York University, New York, NY, USA.
Natasha
N
Puri
Hospital for Sick Children, Biostatistics, Design & Analytics, Department of Public Health Sciences, University of Toronto, Toronto, ON, Canada.
Derek
D
Stephens
Princess Margaret Cancer Centre, Adolescent and Young Adult Program, Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
Laura
L
Mitchell
Radiation Medicine Program, Princess Margaret Cancer Centre, & Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada.
Meredith
M
Giuliani
Princess Margaret Cancer Centre, Oncology Patient and Family Education, Toronto, ON, Canada.
Janet
J
Papadakos
Princess Margaret Cancer Centre, Division of Medical Oncology, University of Toronto, Toronto, ON, Canada. abha.gupta@sickkids.ca.|Division of Hematology/Oncology, Department of Pediatrics, Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada. abha.gupta@sickkids.ca.
Abha A
AA
Gupta
D000293:Adolescent; D000328:Adult; D032882:Comprehension; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D059247:Fertility Preservation / Q000379:methods*; D007722:Health Knowledge, Attitudes, Practice; D057220:Health Literacy; D006801:Humans; D000067010:Literacy; D008297:Male; D008495:Medical Oncology; D008875:Middle Aged; D009369:Neoplasms / Q000453:epidemiology*; D010174:Pamphlets; D010353:Patient Education as Topic / Q000592:standards*; D018802:Patient-Centered Care; D012737:Sex Factors; D017741:Survivors; D055815:Young Adult
Adolescent and young adults; Cancer; Fertility; Fertility risks; Health literacy; Patient education; Patient resources; Preservation; Preservation options; Supportive care
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