Knowledge and perceptions of infertility in female cancer survivors and their parents

Abstract

PurposeThe purpose of this study was to assess knowledge and perceptions of infertility, reproductive concerns, quality of life, and emotional burden of fertility concerns in adolescent female cancer survivors and their parents.MethodsA cross-sectional design was used to investigate reproductive knowledge and concerns among female childhood cancer survivors and their parents. The instruments administered at a single, routine visit were the 13-item knowledge instrument, Adolescent Fertility Values Clarification Tool (VCT), Impact of Event Scale (IES), and Pediatrics Quality of Life Assessment (PedsQL). The knowledge instrument was given to both patients and caregivers, while the PedsQL and VCT were given to only patients and IES only to caregivers.ResultsTwenty-six survivors and 23 parents completed evaluations. The mean age of survivors was 16. The mean knowledge instrument score for survivors was 9.5 (± 1.9) and 9.96 (± 1.7) for parents with a maximum possible score of 13. The VCT indicated almost all patients agreed or strongly agreed they would like more information on how their treatment may affect their fertility, with 84.6% identified wanting a baby in the future. The mean survivor PedsQL score was 67.7 (± 15.3). While parental IES scores as whole did not endorse symptoms of PTSD, 30% of our sample did fall within the range for PTSD.ConclusionAlthough this population of women has above average knowledge scores, they still demonstrated a desire for more information on reproduction after cancer therapy. While PedsQL scores fell within a normal range, survivors report infertility would cause negative emotions.Implication for cancer survivorsThis information can be used refine educational programs within survivorship clinics to improve knowledge of post-treatment reproductive health.

Ethical issues in the care of adolescent and young adult oncology patients

“…Posthumous reproduction and determining rights to preserved genetic tissue can also create ethical dilemmas after the death of a cancer patient who participated in fertility preservation . Lastly, insufficient communication about fertility preservation prevents some patients from making an informed decision . For further discussion of adolescent fertility preservation, see Quinn et al …”

“…[98][99][100] Lastly, insufficient communication about fertility preservation prevents some patients from making an informed decision. [101][102][103][104] For further discussion of adolescent fertility preservation, see Quinn et al 105…”

Fertility discussions and concerns in childhood cancer survivors, a systematic review for updated practice

“…[17][18][19][20][34][35][36][37][38][39] Twentythree percent of the patients (491/2139) were referred to a fertility specialist, 3,19,20,30,31,36,[40][41][42] and ultimately 21% of the surveyed patients underwent FP (645/3051) . 1,[13][14][15]17,18,20,[35][36][37][38]40,[42][43][44][45][46] Only 12% of eligible pubescent girls underwent oocyte preservation (225/1797), 17,20,35,36,40,41 while 45% of boys partook in sperm banking (329/731). 1,16,17,31,35,40,42,44,…”

Do members of cancer peer support groups know more about cancer than non-members? Results from a cross-sectional study in Germany

“…As a result, it can foster empowerment of patients [7]. However, studies indicate that many cancer patients lack cancer-specific knowledge [4,[8][9][10], or that patients feel like they do not know enough about the complex treatment options, side effects, and the care system [11]. This in turn has implications for patients' decisionmaking and the course of the disease [10].…”