Adolescents and Young Adults With Cancer: Oncology Nurses Report Attitudes and Barriers to Discussing Fertility Preservation

2016 ◽  
Vol 20 (4) ◽  
pp. E93-E99 ◽  
Author(s):  
Alexandra Nobel Murray ◽  
Joan Chrisler ◽  
Mark Robbins
2019 ◽  
Vol 64 (2) ◽  
pp. S104
Author(s):  
Diane Chen ◽  
Moira A. Kyweluk ◽  
Afiya Sajwani ◽  
Elisa J. Gordon ◽  
Emilie K. Johnson ◽  
...  

2020 ◽  
Vol 16 (6) ◽  
pp. e488-e497
Author(s):  
Talia Greenspoon ◽  
Rebecca Charow ◽  
Janet Papadakos ◽  
Mahsa Samadi ◽  
Anne Marie Maloney ◽  
...  

PURPOSE: Fertility is an important issue for adolescents and young adults with cancer facing potential infertility. Egg cryopreservation options exist, but information is sometimes overwhelming. We evaluated a fertility preservation educational video and assessed patient and family knowledge and impressions at pre- and post-video timepoints. METHODS: We developed a whiteboard video to explain egg cryopreservation to patients and families. The video was evaluated on the basis of patient education best practices (readability, understandability, actionability). Participants were recruited using convenience sampling in oncology clinics. They completed questionnaires before and after watching to assess knowledge and interest. Inclusion criteria were patients age 13-39 years and minimum 1 month from diagnosis. Descriptive statistics, correlation analyses, and mean comparisons were conducted. RESULTS: The video script read at a grade 8 reading level. Average understandability and actionability scores were below the acceptable standard. We recruited 108 patients (mean age, 27 years) and 39 caregivers/partners. Patients’ knowledge about fertility preservation increased after viewing the video. Interest was high before and after, and satisfaction was high for both patients and caregivers. Participants appreciated information on process, procedure, and delivery but desired more information on logistics, including cost. CONCLUSION: A targeted patient education video about fertility preservation options can build knowledge and encourage discussions about infertility. The video can be used as a model for videos on related topics to provide accurate information in a youth-friendly medium; however, following patient education best practices for readability, understandability, and actionability may increase video effectiveness. Future research should assess how audiovisual patient education material affects patient behavior.


Cancer ◽  
2016 ◽  
Vol 122 (14) ◽  
pp. 2216-2223 ◽  
Author(s):  
Anna Font‐Gonzalez ◽  
Renée L. Mulder ◽  
Erik A.H. Loeffen ◽  
Julianne Byrne ◽  
Eline van Dulmen‐den Broeder ◽  
...  

2019 ◽  
Vol 25 (6) ◽  
pp. 694-716 ◽  
Author(s):  
Shira Baram ◽  
Samantha A Myers ◽  
Samantha Yee ◽  
Clifford L Librach

Abstract BACKGROUND Many transgender individuals choose to undergo gender-affirming hormone treatment (GAHT) and/or sex reassignment surgery (SRS) to alleviate the distress that is associated with gender dysphoria. Although these treatment options often succeed in alleviating such symptoms, they can also negatively impact future reproductive potential. OBJECTIVE AND RATIONALE The purpose of this systematic review was to synthesize the available psychosocial and medical literature on fertility preservation (FP) for transgender adolescents and young adults (TAYAs), to identify gaps in the current research and provide suggestions for future research directions. SEARCH METHODS A systematic review of English peer-reviewed papers published from 2001 onwards, using the preferred reporting items for systematic reviews and meta-analyses protocols (PRISMA-P) guidelines, was conducted. Four journal databases (Ovid MEDLINE, PubMed Medline, Ovid Embase and Ovid PsychINFO) were used to identify all relevant studies exploring psychosocial or medical aspects of FP in TAYAs. The search strategy used a combination of subject headings and generic terms related to the study topic and population. Bibliographies of the selected articles were also hand searched and cross-checked to ensure comprehensive coverage. All selected papers were independently reviewed by the co-authors. Characteristics of the studies, objectives and key findings were extracted, and a systematic review was conducted. OUTCOMES Included in the study were 19 psychosocial-based research papers and 21 medical-based research papers that explore fertility-related aspects specific for this population. Key psychosocial themes included the desire to have children for TAYAs; FP discussions, counselling and referrals provided by healthcare providers (HCPs); FP utilization; the attitudes, knowledge and beliefs of TAYAs, HCPs and the parents/guardians of TAYAs; and barriers to accessing FP. Key medical themes included fertility-related effects of GAHT, FP options and outcomes. From a synthesis of the literature, we conclude that there are many barriers preventing TAYAs from pursuing FP, including a lack of awareness of FP options, high costs, invasiveness of the available procedures and the potential psychological impact of the FP process. The available medical data on the reproductive effects of GAHT are diverse, and while detrimental effects are anticipated, the extent to which these effects are reversible is unknown. WIDER IMPLICATIONS FP counselling should begin as early as possible as a standard of care before GAHT to allow time for informed decisions. The current lack of high-quality medical data specific to FP counselling practice for this population means there is a reliance on expert opinion and extrapolation from studies in the cisgender population. Future research should include large-scale cohort studies (preferably multi-centered), longitudinal studies of TAYAs across the FP process, qualitative studies of the parents/guardians of TAYAs and studies evaluating the effectiveness of different strategies to improve the attitudes, knowledge and beliefs of HCPs.


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