Purpose The 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. Methods A 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. Results Twenty-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. Conclusion Although 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 survivors This information can be used refine educational programs within survivorship clinics to improve knowledge of post-treatment reproductive health. . . . . . Keywords Fertility Quality of life Cancer Survivorship AYA Knowledge Introduction continues to grow, more attention is being dedicated to im- proving quality of life post-treatment. Survival is often accom- Significant improvements have been made in the treatment of panied by long-term adverse outcomes from radiation and childhood cancers, with the 5-year survival rate currently over chemotherapeutic agents that leave many organ systems vul- 80% in the USA . Of the children and adolescents who nerable . Addressing these Blate effects^ of treatment in reach this milestone, 95% are expected to reach 15-year sur- survivors is essential to provide quality care . As such, vival . As the population of childhood cancer survivors fertility and reproductive health have become important topics among adolescent cancer survivors. * Taryn Sandheinrich Sandheinrich.firstname.lastname@example.org Background Department of Pediatrics, Division of Hematology/Oncology, Although many patients do maintain their reproductive poten- Siteman Kids at St. Louis Children’s Hospital, 1 Children’sPlace, St. Louis, MO 63110, USA tial, infertility is a late-effect of concern, especially for female cancer survivors. Female childhood cancer survivors have a Washington University School of Medicine, 1 Children’sPlace, St. Louis, MO 63110, USA 50% increased risk of clinical infertility compared to their 2434 Support Care Cancer (2018) 26:2433–2439 siblings . Exposure of the ovaries or uterus to radiation or treatment would have more reproductive concerns and lower alkylating agents independently increases the risk of infertility quality of life. Furthermore, parents with lower knowledge in a dose-dependent fashion . In fact, adolescent oncology scores would report higher parental distress. We hope identi- patients and parents of pediatric cancer patients express con- fying potential deficits in knowledge about fertility and fertil- cern about fertility-related side effects regardless of the type of ity preservation can facilitate the development of educational treatment received or predicted risk of infertility . In a study interventions, thereby improving access to fertility resources of young women with breast cancer, the concern about having and survivor’s attitudes towards fertility. Ultimately, the more children and future family was second only to fears of recur- comprehensive care will bring about improved long-term out- rence and an uncertain future . comes and quality of life in survivors. The American Society for Clinical Oncology (ASCO) rec- ommends physicians discuss risks of infertility with all cancer patients of reproductive age and provide fertility preservation Methods information and/or referrals to reproductive specialists when appropriate . Numerous fertility preservation options are A cross-sectional design was used to investigate reproductive available to address the reproductive needs of survivors, in- knowledge and concerns among a population of female child- cluding embryo, oocyte, and ovarian tissue cryopreservation hood cancer survivors and their parents at a single academic . Yet, discussions about fertility can be challenging for institution. All investigations were performed during routine newly diagnosed pediatric cancer patients. The doctor- follow-up at the institution’s late effects clinic for childhood parent-adolescent triad presents unique communication chal- cancer survivors, which sees patients greater than 2 years post- lenges, particularly with regard to fertility . Physician dis- completion of therapy. Participants were required to meet the comfort from lack of knowledge about fertility preservation, following inclusion criteria: female, between ages 13–18, at uncertainty about its success or cost, and cultural barriers least 2 years post-treatment for primary cancer, no cognitive make discussions less likely . Providers may also view impairments, and active treating relationship with the institu- survival as top priority and regard the urgency of treatment tion’s Late Effects Clinic. Patients were excluded if they were too great for the potential delay required for fertility preserva- non-English speaking, medical records were not available for tion techniques . Furthermore, conversations about fertil- review, or there was documented infertility at the time of the ity and other late effects may not get the same attention or study. Parents or guardians of eligible females were also eli- retention by patients and parents in the setting of an emotion- gible for participation. All participants provided consent and ally traumatic diagnosis and the overwhelming discussions those younger than age 18 provided assent. Chart review was about prognosis and treatment. Therefore, although there is performed to extract demographic characteristics as well as consensus that physicians should engage in conversations information regarding the patient’s cancer diagnosis and treat- about potential risk of infertility and fertility preservation, this ment. Patients and parents were not paired for any part of the does not necessarily occur. analysis. Approval was obtained from the Institutional Moreover, a gender bias exists in the dissemination of fer- Review Board of Washington University in St. Louis. tility information. Among young adult cancer survivors, women are less likely to receive information about treatment Instruments impact on fertility . Women are also more likely to report emotional distress about risk of infertility and more negative Knowledge scale Knowledge regarding fertility was evaluated experiences with fertility-related patient-provider communi- using a 13-item questionnaire previously reported by cation . Balthazar, Fritz, and Mersereau at the University of North There has been limited quantitative investigation to date Carolina at Chapel Hill . This questionnaire was devel- about post-treatment retention of knowledge regarding fertil- oped by fertility preservation specialists and was pilot tested ity by parents and patients and how the degree of retention among a cohort of women who had required medical treat- may influence attitudes toward a survivor’sreproductive state. ment for serious illnesses with a potential impact on their It has been shown that comprehension of one’s disease and future fertility. Patients received 1 point per correct answer, treatment is closely associated with overall quality of life . with 13 total points possible if all answers are correct. Both Therefore, this study team aimed to collect quantitative data patients and parents completed the knowledge questionnaire. about knowledge and perceptions of fertility in the female pediatric cancer survivor population. Among adolescent and Adolescent fertility values clarification tool To determine val- young adult cancer survivors, unmet informational need has ue placed on reproductive potential and the level of reproduc- been associated with an elevated anxiety state . We hy- tive concerns experienced by patients, the Values Clarification pothesized that female childhood cancer survivors with limit- Tool (VCT) was used. This survey was adapted from the ed knowledge on fertility and its relationship to cancer Reproductive Concerns Scale (RCS) which was originally Support Care Cancer (2018) 26:2433–2439 2435 Table 1 Selected characteristics of survivors (n =25–26) developed to measure concerns regarding fertility among fe- male long-term survivors of cancer diagnosed as an adult . Variable n (%) or median (range) The RCS was later modified for adolescent and young adult cancer survivors . The VCT is a 10-item instrument. Nine Age at time of survey (years) 16 (13–18) items were scored using a Likert-scale from 0 to 4 (strongly Age at diagnosis (years) 5.25 (0.68–15.86) disagree to strongly agree). One item contained the fill-in-the- 0–5 13 (50) blank prompt BIf I cannot have a baby, I will be___.^ Patients 6–10 8 (30.7) were instructed to fill in the word that best completed the 11–15 4 (15.4) statement. 16–18 1 (3.8) Primary diagnosis Impact of event scale The Impact of Event Scale (IES) was Brain tumor 1 (3.8) used, with permission of the author, to assess the emotional Leukemia/lymphoma 18 (69.2) burden experienced by parents due to their child’s fertility Sarcomas 2 (7.7) concerns. It is a 15-item scale with responses ranging between Non-sarcomatous solid tumor 5 (19.2) 0 and 3, with increasing value corresponding to increasing Type of treatment frequency of experiencing each item. For scoring, the mean Chemotherapy 25 (100.0) score of seven items determined the intrusion subscale and the Radiation 10 (40.0) mean of the other eight determined the avoidance subscale. Surgery 7 (28.0) The two computed means were then summed to give the total Bone marrow transplant 1 (4.0) score for each participant . Length of therapy (months) 21.5 (2–36) Health insurance The pediatric quality of life inventory In order to assess the Private 17 (65.4) quality of life of study participants, the Pediatric Quality of Public 9 (34.6) Life Inventory™ Cancer Module (PedsQL) was used. The Education level Cancer Module was designed to measure dimensions of qual- Grade 6–85(19.2) ity of life specific to children with cancer . The PedsQL Grade 9–12 17 (65.4) includes eight subscales, each consisting of several questions High school graduate 1 (3.8) with responses ranging between 0 and 4. All items are re- Some college 3 (11.5) versed scored and linearly transformed to a 0–100 scale. The Type of education total score is the mean score of all the items. Higher scores Public 25 (96.2) indicate better quality of life. Private 1 (3.8) Exposure to fertility information Physician counseling 9 (36.0) Analysis Parents 11 (44.0) Own research 4 (16.0) All data analysis was performed using IBM SPSS Statistics Peers/friends 1 (4.0) 23. Descriptive statistics were used to evaluate clinical and Mean (± SD) sociodemographic characteristics of patients and parents and Knowledge score 9.5 (± 2.0) distribution of scores of the outcome variables. Pearson cor- Pediatric Quality of Life Score 67.7 (± 15.3) relation coefficients were used to determine potential associa- tions between knowledge scores and other outcome variables. Two-tailed independent t test was used to evaluate difference in knowledge scores between patients and parents. The statis- received chemotherapy (100%). Only 40% were treated with tical significance was set to an alpha level of 0.05. radiation. In regard to health insurance coverage, 65% re- ceived private health insurance, while 34% were on Medicaid. Most were in high school at the time of the study Results (65%) and in public schools (96%). The routes of exposure to fertility information selected the most by survivors were from A total of 26 female pediatric cancer survivors and 23 parents parents (44%) and physician counseling (36%). Of the par- completed the study questionnaire. Selected characteristics of ents, most were white (87%) and mothers of participating both cohorts are shown in Tables 1 and 2. The median age of survivors (87%). In regard to parental education, 39% of par- the survivors was 16 (range, 13–18) years old. Most had a ents were college graduates, and 26% were high school grad- primary diagnosis of leukemia or lymphoma (69%), and uates. The highest reported resource for exposure to fertility 2436 Support Care Cancer (2018) 26:2433–2439 Table 2 Selected characteristics of parents (n =20–23) parents answering correctly. Only 54% of survivors and 59% of parents thought that IVF with embryo freezing was an Variable n (%) established treatment for patients without cancer. In addition, Race more survivors believed chemotherapy increased the risk of White 20 (87.0) birth defects in future children (50% of survivors compared to Black 1 (4.3) 23% of parents). Other 2 (8.7) Results of the Adolescent Fertility Values Clarification Tool are shown in Fig. 1. Notably, almost all patients wanted Education level College graduate 9 (39.1) information about the effect of cancer treatment on their fer- tility (96% either agree/strongly agree). Similarly, most report- Some college 5 (21.7) ed wanting a baby in the future (85% agree/strongly agree) High school grad 6 (26.1) and felt frustrated about the risk of infertility (69% agree/ Some high school 3 (13.0) strongly agree). Half of the survivors stated that they would Relationship to patient feel upset, sad, or depressed if they could not have a baby. Six Mother 20 (87.0) (23%) survivors reported more negative feelings such as being Father 2 (8.7) devastated, mortified, or depressed. A significant portion of Grandmother 1 (4.3) patients endorsed worry about their future baby getting sick or Religion having cancer (60% agree/strongly agree). Unfortunately, on- Protestant 7 (30.4) ly a minority (27%) of patients felt like they had control over Catholic 5 (21.7) their ability to have a baby in the future. Jewish 0 (0.0) The mean survivor PedsQL score was 67.7 (± 15.3). This Muslim 0 (0.0) was not found to be statistically significantly correlated with Other 7 (30.4) the patient knowledge score (r = − 0.005; p =0.98). No practicing religion 4 (17.4) Parent IES mean subscale scores for intrusion and avoid- Exposure to fertility information ance were 11.83 (± 9.4) and 8.9 (± 8.4) respectively. Mean Physician counseling 7 (30.4) total score for parents was 20.7 (± 16.6). There was no statis- My own research 11 (47.8) tically significant correlation between parent knowledge scale Peers/friends 5 (21.7) scores and IES scores (r = − 0.05; p =0.82). Mean (± SD) Impact of Event Scale Total score 20.7 (± 16.6) Discussion Intrusion subscale 11.8 (± 9.4) Avoidance subscale 8.9 (± 8.4) Female pediatric cancer survivors and their parents were given Knowledge score 9.96 (± 1.71) four survey tools to assess knowledge and attitudes towards the survivor’s fertility. In the knowledge scale, this cohort of patients and parents demonstrated higher scores than previ- information by parents was through their own research (48%), ously reported. Balthazar et al. (2011) found the mean knowl- with physician counseling (30%) and peers/friends (22%) less edge score for their pilot group of adult women to be 5.9 (± common. 2.7), much lower than mean scores in this study of 9.6 (± 1.9) The mean knowledge score for survivors was 9.5 (± 1.9), for patients and 9.96 (± 1.7) for parents. This discrepancy in out of a maximum possible score of 13. This did not differ knowledge may be, in part, attributed to differences in the time significantly from the mean knowledge score for parents of of survey administration. In the pilot study by Balthazar et al. 9.96 ± 1.7 (t (47) = − 0.86; p =0.394). Table 3 lists the knowl- (2011), the survey was distributed after cancer diagnosis dur- edge scale questions and the percentage of patients and par- ing consultation with a reproductive endocrinologist, but prior ents answering each item correctly. Notably, knowledge gaps to initiation of therapy. In comparison, in this study, the survey primarily existed in questions addressing differences in fertil- was given at least 2 years post-completion of therapy. In that ity treatments. About half of patients and parents were aware time, all survivors had been integrated into a survivorship that different fertility preservation options had varying success program that provides care to childhood cancer survivors off rates in achieving pregnancy (58 and 55% respectively) and therapy. During this regular long-term follow-up, the attention that these treatment options could change following their can- shifts from cancer treatment and surveillance to late effect cer treatment (58 and 59% respectively). A low percentage education and wellness promotion. Other discrepancies in sur- were aware of the difference in success of egg freezing com- vey results occur on a number of questions that specifically pared to embryo freezing, with 36% of survivors and 55% of pertain to cancer and fertility. Within the study population of Support Care Cancer (2018) 26:2433–2439 2437 Table 3 Knowledge scale items and percent correct in survivors and parents % correct Survivors Parents (n =25) (n =23) All cancer treatment results in infertility 100.0 100.0 A patient must be married or have a partner to receive fertility preservation treatment 92.0 100.0 All fertility preservation treatments have a similar chance of achieving pregnancy 57.7 54.5 Insurance never covers fertility preservation treatments 84.6 85.7 My fertility preservation treatment options will be the same following my cancer treatment 57.7 59.1 What is the percentage of women who freeze their embryos who will become pregnant in the future? 69.2 56.5 Women who have fertility preservation treatment have an increased risk for recurrence of their cancer in the future 76.9 91.3 Egg freezing has the same chances of future pregnancy as embryo freezing 36.0 54.5 A woman who freezes her eggs will have them available in the future whenever she is ready to use them 80.8 82.6 Frozen eggs are guaranteed to result in pregnancy in the future 96.2 95.7 Frozen embryos are guaranteed to result in pregnancy in the future 88.5 95.7 IVF with embryo freezing is an established treatment used in patients without a cancer diagnosis 53.8 59.1 Chemotherapy increases the risk that my future children will have birth defects 50.0 77.3 Balthazar et al. (2011), only 17% of women answered the This requires further investigation as the study populations question BWomen who have fertility preservation treatment had many differences. Of note, our patient population was have an increased risk for recurrence of their cancer^ in con- young, but the parents were of a comparable age to the trast with 77% of adolescents and 91% of parents that were Balthazar et al. (2011) group. able to answer correctly. Also, on the question Bchemotherapy The Adolescent Fertility Values Clarification Tool indicat- increases the risk that my future children will have birth ed that almost all patients agreed or strongly agreed that they defects^, only 14% of the women in the Balthazar et al. would like more information on how their treatment may af- (2011) group answered correctly as compared to 50% of sur- fect their ability to have children. Despite their overall above vivors and 77% of parents in our study. One can assume from average knowledge scores, the desire for more information is these differences that education on cancer diagnosis and im- consistent with previously reported literature [21, 22]. The pact of treatment on fertility may affect a patient’sknowledge evaluation of reproductive potential and interventions to assist of fertility preservation, since that is the most significant dif- those with impaired fertility are complicated and evolving. ference between the original study group and our population. While patients reported low levels of perceived control of their Legend 1. If I cannot have a baby, I would blame my doctor. 2. I am worried about having a baby in the future because I might get sick/cancer again. 3. If I cannot have a baby, I would blame my illness/cancer. 4. I feel like I have control over my ability to have a baby in the future. 5. I am worried about having a baby in the future because my baby might get sick/cancer. 6. I feel frustrated that I might not be able to have a baby in the future. 7. I feel like I can talk to my parents about my ability to have a baby in the future. 8. One day, I would like to have a baby. 9. I would like information about how my cancer treatment could affect my ability to have children. Fig. 1 Adolescent Fertility Values Clarification Tool results 2438 Support Care Cancer (2018) 26:2433–2439 fertility, it is likely that the desire for knowledge is related to with unique support services available and varying structures their lack of perceived control. Also, consistent with previous depending on the institution. It cannot be assumed that each literature, most of the patients would like to have children in long-term follow-up program provides education regarding the future and report negative feelings if they would be unable treatment-related risks to fertility in a similar manner or that to have a baby . It is important for those providing survi- survivorship care includes thorough information and counsel- vorship care to acknowledge that many negative emotions are ing regarding potential risk to reproductive potential. associated with the threat to fertility in this young population Therefore, knowledge scores in particular may vary per insti- of cancer survivors. This negative impact could significantly tution. Our sample was small, and the majority of patients influence other health-related issues, having a significant im- were treated for leukemia. A more heterogeneous sample pact on the overall state of the patient. Providers can then would have been beneficial, since other childhood cancers anticipate that psychological support services should be avail- often require more gonadal toxic treatment and may have able, even to young patients, if it is determined the patient has influenced the emotional impact and knowledge scores . compromised reproductive potential. Despite the patient- In addition, our small sample size did not allow for univariate reported negative emotions associated with the inability to or multivariate modeling to be performed to provide a deeper have a child, quality of life scores were within normal range, appreciation of the impact treatment and sociodemographic consistent with previously published data for adolescents with characteristics have on fertility knowledge and quality of life. cancer. Quality of life among this group of adolescent survi- vors is not correlated with knowledge scores, indicating that perhaps the threat of potential fertility issues and the knowl- Conclusion edge relating to those issues minimally contribute to the over- all quality of life of female adolescent cancer survivors. Our findings reinforce that long-term follow-up with an on- While parental IES scores as whole do not endorse symp- cology team well-versed in late effects of cancer treatment, in toms of PTSD or problematic feelings of intrusion or avoid- particular effects on fertility, is an integral part of survivorship. ance related to their child’s fertility, 30% of our sample did Our population of adolescents demonstrated average fertility score within the range for PTSD. It has been reported that knowledge scores higher than previously found in adult wom- 29.5% of mothers and 11.5% of fathers have met the criteria en prior to their cancer treatment, likely reflecting the knowl- for a diagnosis of PTSD at some after their child’s cancer edge gained by engagement in specialized survivorship care. diagnosis . Landolt et al. (2003) found that the incidence However, deficiencies in knowledge, particularly about types rate of PTSD in parents of patients with cancer was much of fertility preservation options, were still present and serve as higher than even adults with a cancer diagnosis. A significant a target for future educational intervention. Survivors are con- association between PTSS symptoms and physical late effects cerned about the risk of unsuccessful childbearing. Providers has been found in cancer survivors and their parents . need to recognize the significant emotional impact even the While survivorship care is often focused on the patient, this potential of infertility can have on adolescent female cancer finding highlights the importance of including the survivor’s survivors and their families and provide comprehensive edu- family or people close in their support system. Survivors of cation and support services. childhood cancer are at risk for a multitude of chronic health issues [3, 26]. While this study is focused on fertility, it is Compliance with ethical standards unknown what other potential health risks would cause emo- tional or distressing symptoms in family members of cancer Ethical approval BAll procedures performed in studies involving human participants were in accordance with the ethical standards of the institu- survivors. Interestingly, knowledge scores were not associated tional and/or national research committee and with the 1964 Helsinki with avoidance, intrusion, or total IES scores. Therefore, re- declaration and its later amendments or comparable ethical standards.^ gardless of a family’s knowledge of potential adverse health outcomes, the level of distress should be evaluated indepen- Informed consent BInformed consent/assent was obtained from all in- dently in order to detect those that would benefit from addi- dividual participants included in the study.^ tional counseling or support services. Conflict of interest The authors declare that they have no conflict of interest. Limitations Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http:// creativecommons.org/licenses/by-nc/4.0/), which permits any noncom- Study data was obtained from a single institution, more spe- mercial use, distribution, and reproduction in any medium, provided cifically, a single long-term follow-up program and small, you give appropriate credit to the original author(s) and the source, pro- homogeneous sample. Long-term follow-up clinics for survi- vide a link to the Creative Commons license, and indicate if changes were vors of childhood cancer exist throughout the country, each made. Support Care Cancer (2018) 26:2433–2439 2439 13. 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