Young Adult Cancer Patients Research Articles

Impact of Financial Costs on Patients' Fertility Preservation Decisions: An Examination of Qualitative Data from Female Young Adults with Cancer and Oncology Providers.

Purpose: To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. Methods: Female YAs (N = 18; aged 21-36) with a history of cancer and oncology providers (N = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. Results: Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. Conclusion: Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care.

The Feasibility and Acceptability of a Data Capture Methodology in Pediatric Cancer Patients Treated with Targeted Agents and Immunotherapies.

As childhood cancer treatments have improved to include new and innovative agents, the need for more advanced monitoring of their long-term effects and related research has increased. This has resulted in a need for evidence-based research methodologies for the longitudinal care of childhood cancer patients treated with targeted agents and immunotherapies. The rationale for this pilot study was to determine the feasibility and acceptability of a data capture methodology for pediatric, adolescent, and young adult cancer patients treated with targeted agents and immunotherapy as there is little research to inform this delivery of care. Data were collected from thirty-two patients and two providers for descriptive statistics and thematic analyses. Feasibility was characterized by expected participant attrition. Key drivers of acceptability were (1) providers' language and clarity of communication and (2) convenient participation requirements. Long-term follow-up research practices developed with input from key stakeholders, including patients, caregivers, and providers, can lead to acceptable and feasible research protocols that optimize successful participant recruitment. These evidence-based research practices can result in high participant satisfaction and can be implemented as program development initiatives across centers caring for childhood cancer survivors.

Social Determinants of Health Impacting the Experience of Young Adults With Cancer at a Single Community Urban Hospital: A Retrospective Cohort Study.

Adolescent and young adult (AYA) cancer patients receive palliative medicine consultation at a late stage and face diagnostic delays. Failure to address social determinants of health (SDOH) and AYA-specific needs can adversely impact patient experience. This retrospective observational cohort study used data from chart review to assess the frequency of SDOH impacting AYA patients and setting of initial diagnosis at a US urban safety-net hospital. The association of SDOH variables with delays in treatment, loss of follow-up, and no-shows was tested using Chi-square and t-tests. One hundred seventy five patient charts were reviewed. Sixty-two percent were diagnosed in acute care settings. Substance use disorders, financial, employment, and insurance issues were associated with delayed treatment, with weak to moderate effect sizes. Mental health diagnoses, substance use disorder, homelessness, and financial burdens were associated with patient no-shows, with moderate to large effect sizes. Twenty-five percent of patients received palliative medicine consultation; 70% of these occurred at end of life. This study demonstrates the impact of SDOH on AYA cancer care and the need for policy allowing for intervention on SDOH.

The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

This paper examines the use of digital social platforms to enhance the engagement of adolescent and young adult (AYA) cancer patients in research. Among AYAs, digital social networks have emerged as valuable resources for connection, information exchange, and emotional support. Patient engagement, encompassing participation and empowerment, is a critical aspect of AYA oncological research, yet there is a lack of scholarship dissecting the manifestation of these concepts in relation to digital social platforms. This study aims to bridge this gap by employing the frameworks of participatory culture and data ethics to analyze the impact of digital social platforms on patient engagement in research. Semi-structured qualitative interviews were conducted with eight experts from AYA patient organizations to gather insights on this topic. The findings reveal the potential of digital social platforms in fostering peer support, improving patient awareness and collaboration, increasing research enrollment, and diversifying data collection with user-generated content. However, challenges related to communication, privacy, and ethical considerations such as diversity and inclusion were also identified. The study contributes to the understanding of patient engagement among AYA cancer patients in the digital age and the development of effective strategies to encourage and highlight the voices of this patient population.

Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP).

A minority of adolescent and young adult cancer patients (AYA) live with an uncertain or poor prognosis (UPCP). Caring for a young, advanced cancer patient can lead to caregiver burden. This study aims to provide insight into burden on informal caregivers of AYA cancer patients with UPCP. In-depth, semistructured interviews were conducted with parents (n = 12), siblings (n = 7), friends (n = 7), and partners (n = 13). Thematic analysis was performed to derive themes from the data. Participants reported sleeping problems and stress. They struggle with uncertainty, fear, loss, and negative emotions. Family life is altered due to solely taking care of the children, but also the AYA. Contact with friends and family is changed. The relationship to the AYA can shift positively (e.g., becoming closer) or negatively (e.g., more conflict or no longer being attracted). Participants were under pressure, having to take on many responsibilities and multiple roles. In the financial domain, they report less income and often must continue working. A high amount of caregiver burden is experienced among informal caregivers of AYAs with UPCP. Yet only part of the impact appears to be age specific. Specific, age-adjusted interventions can be developed to lower the burden.

Exploring the Barriers to Social Support Interactions: A Qualitative Study of Young Adult Cancer Patients and Young Adult Supporters

ABSTRACT This study explores the reasons why young adults (ages 18–39) struggle to provide or avoid providing support to young adult cancer patients. The study also explores young adult cancer patients’ perceptions of why they have not received support from individuals who did not provide support. A total of 722 reasons were collected through online surveys and analyzed: 438 were provided by young adults who knew a young adult with cancer (N = 131), and young adult cancer patients (N = 111) provided 284 reasons why they believe they did not receive support. Initially using a previous typology of 16 nonsupport reasons, an abductive thematic analysis yielded a total of 21 barriers to the provision of social support. These barriers were categorized across four higher-order categories: recipient-focused, supporter-focused, relationship-focused, and context-focused. Some reasons provided by young adult supporters were not provided by young adult patients and vice versa, suggesting the potential for discrepancies between why cancer patients believe they did not receive support and nonsupporters’ actual reasons for not providing support. These various reasons why people struggled to provide support or avoided providing support can act as a list of barriers that future researchers and practitioners can address through the development of resources and interventions aimed at fostering adequate support provision throughout individuals’ cancer experiences. Cancer patients can address the experience of nonsupport by individuals in their lives by being more direct in communicating their support desires and, when unsuccessful, using cognitive reappraisal strategies.

The use of fertility treatments among reproductive-aged women after cancer

To examine whether female cancer survivors are more likely to pursue care for infertility after cancer than women without cancer. Population-based cohort study involving detailed interviews regarding reproductive history. Not applicable. Female cancer survivors aged 22-45 years, who were at least 2 years after a cancer diagnosis between the ages of 20 and 35 years (n = 1,036), and age-matched comparison women with no cancer history (n = 1,026). History of cancer vs. no history of cancer. Each cancer survivor was randomly matched to a comparison woman, who was assigned an artificial age at cancer diagnosis equal to that of her match. Matching was repeated 1,000 times. Outcomes of visiting a doctor for help becoming pregnant or undergoing fertility treatment were modeled using Cox proportional hazards regression, comparing survivors after a cancer diagnosis to age-matched comparison women, adjusted for race, income, residence, education, and parity. Only 25.5% of cancer survivors reported meeting their desired family size before a cancer diagnosis. The median time from diagnosis to interview among survivors was 7 (interquartile range 5-11) years. Cancer survivors were more likely to report having no children (32.6%) at the interview compared with women with no cancer history (19.5%). Survivors were not more likely to visit a doctor for help becoming pregnant compared with women without a cancer history, matched on birth year and followed by the age at which cancer survivors received their diagnosis (hazard ratio [HR] 1.16, 95% simulation interval [SI] 0.78-1.74). Compared with cancer-free women, cancer survivors had similar probabilities of pursuing any treatment (adjusted HR [aHR] 0.88, 95% SI 0.46-1.56), using hormones or medications (aHR 0.86, 95% SI 0.46-1.63), or undergoing intrauterine insemination (aHR 1.26, 95% SI 0.40-5.88) to conceive. Cancer survivors were slightly more likely to pursue surgical interventions to become pregnant (HR 1.55, 95% SI 0.67-3.71). Of those who visited a doctor but declined to pursue fertility treatment, one-quarter of women reported declining treatment due to cost. Cancer survivors did not use fertility treatments at higher rates than the general population. Further counseling and education surrounding fertility options are recommended for young adult female cancer patients after treatment is completed.

Development of the Together - Teens&20s microsite, an online resource for adolescent and young adult cancer patients

ObjectivesThe purpose of this study was to explore the information needs and preferences of adolescent and young adult (AYA) cancer patients to guide next steps for development of a new online resource for this audience. The goals were to understand information needs, prioritize topic areas, and inform website design and functionality. MethodsParticipants were AYA cancer patients ages 13–25 years. We used multiple methods in two phases to gather audience feedback. The first phase collected quantitative data in an electronic survey (n = 45) about AYA patients' internet use and content preferences. The second phase collected qualitative data through focus groups (n = 13) about user preferences for content design and website function. ResultsSurvey results showed AYA patients were more interested in content about how treatments would impact their lives rather than the treatments themselves. They preferred content on school, careers, relationships, independence, side effects, and fertility. The focus groups indicated AYA patients prefer a clean, stylish design; infographics and visual aids; and the ability to find information quickly and control the amount they read. ConclusionsOnline resources represent an important opportunity to advance cancer education for AYA patients. However, it is important to consider the information needs and preferences of this audience in content design and delivery. InnovationPractitioners should use stakeholder input to guide the creation of patient education resources that are age- and audience-appropriate. This study provides insights into AYA information needs and preferences in pediatric oncology.

Strategies for recruitment and retention of adolescent and young adult cancer patients in research studies.

We conducted a literature review to identify commonly used recruitment and retention strategies in research among adolescent and young adult (AYA) cancer survivors 15-39 years of age and examine the effectiveness of these strategies based on the reported recruitment and retention rates. We identified 18 publications published after 2010, including 14 articles describing recruitment strategies and four articles discussing retention strategies and addressing reasons for AYA cancer patients dropping out of the studies. In terms of recruitment, Internet and social networking strategies were used most frequently and resulted in higher participation rates of AYA cancer survivors compared to other conventional methods, such as hospital-based outreach, mailings, and phone calls. In terms of retention, investigators used monetary incentives in all four studies and regular emails in two studies. There was no association between the number of strategies employed and the overall recruitment (p = 0.09) and retention rates (p = 0.33). Future research and planned studies testing recruitment and retention strategies are needed to identify optimal, modern communication procedures to increase AYA participation and adherence. More education should be provided to AYAs to increase their knowledge of research studies and strengthen the connection between AYA cancer survivors and their health providers.

Risk of Therapy-Related Acute Myeloid Leukemia (t-AML) in Adolescent and Young Adults Cancer Patients Treated with Chemotherapy with or without Radiotherapy: A National Population-Based Cohort Study Using SEER Registry

INTRODUCTION The risk of treatment-related acute myeloid leukemia (t-AML) in adolescents and young adults (AYA) with first cancers treated with chemotherapy with or without radiation is not well characterized. We analyzed Surveillance, Epidemiology and End Result (SEER) data for the past 45-years (1975-2020) to identify the overall risk of t-AML in treated AYA cancer patients (pts) and by index cancer sites as well as latency periods. METHOD We analyzed NCI's SEER-8 registries. ICD-O-3/WHO-2008 codes were used to identify pts with index cancer types between the ages of 15-39 years (AYA), treated with either chemotherapy or radiotherapy, and with a subsequent diagnosis of acute myeloid leukemia (AML) at least one year after index cancer, between January 1975 and December 2020. The risk of t-AML was estimated by standardized incidence ratio (SIR), defined as the ratio of observed t-AML-cases in the AYA-with-cancer, to the expected number of AML-cases in the matched general US population. A reference rate file for AML incidence in age, gender, race and calendar-year matched US population is available in SEERStat software. A Poisson distribution of observed t-AML was assumed for the calculation of 95% confidence intervals (CIs). A P-value <.05 was considered statistically significant. We stratified the risk of t-AML for index cancer types with ten or more pts, by attained-calendar-years, and latency at multiple time intervals (Table-1) from index cancer diagnosis. RESULT Among 102,879 AYA cancer pts eligible for analysis, 236 pts developed t-AML with SIR of 6.19 (95%CI: 5.43-7.04, P <.05) with excess risk of 1.46 per-10000 person-years (pyrs). (Table-1). We stratified risk for index cancer types with at least ten patients developing t-AML, these included breast, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), testicular, thyroid, bone and joint, and soft tissue including heart. As a general trend, risk of t-AML was highest during 1-3 years after index cancer diagnosis compared to subsequent latency periods. However, risk for t-AML was significantly greater than the matched-general US population even after 20-40 years of breast cancer, HL, and NHL (Table-1). When stratified by attained calendar-year periods (1975-1985, 1986-1995, 1996-2005, 2006-2015, 2016-2020), risk for t-AML was higher than general population in all time periods. However, overall SIR was comparatively lower for recent time periods, particularly lowest during 2016-2020 [SIR: 3.49 (2.51-4.72, P <.05)]. Notably, the highest risk for t-AML in 2016-2020 was observed with index cancer of soft tissue including heart [SIR: 10.12 (1.23-36.57), P <.05]. CONCLUSION In this study spanning between 1975-2020, we observed the risk of t-AML trending down among AYA in recent years, albeit higher than the age matched general population. The risk of t-AML remained significantly elevated even after 20-40 from diagnosis of breast cancer, HL and NHL. Since these pts likely received radiation and older (higher intensity) chemotherapy based-regimens, it is essential to analyze the long-term impact of newer therapies for these cancers and assess the risk of t-AML in future studies.

Early skeletal muscle loss in adolescent and young adult cancer patients treated with anthracycline chemotherapy.

Early skeletal muscle loss has been observed in adolescent and young adult (AYA) sarcoma patients undergoing treatment. Identification of individuals within the AYA populace that are at greatest risk of anthracycline-induced skeletal muscle loss is unknown. Moreover, investigations which seek out underlying causes of skeletal muscle degradation during chemotherapy are critical for understanding, preventing, and reducing chronic health conditions associated with poor skeletal muscle status. Computed tomography (CT) scans were used to investigate changes in skeletal muscle of 153 AYA sarcoma and Hodgkin lymphoma patients at thoracic vertebra 4 after anthracycline treatment. Images were examined at three time points during the first year of treatment. In parallel, we used translational juvenile mouse models to assess the impact of doxorubicin (DOX) in the soleus and gastrocnemius on muscle wasting. Significant reductions in total skeletal muscle index and density were seen after chemotherapy in AYA cancer patients (p < 0.01 & p = 0.04, respectively). The severity of skeletal muscle loss varied by subgroup (i.e., cancer type, sex, and treatment). Murine models demonstrated a reduction in skeletal muscle fiber cross-sectional area, increased apoptosis and collagen volume for both the soleus and gastrocnemius after DOX treatment (all p < 0.05). After DOX, hindlimb skeletal muscle blood flow was significantly reduced (p < 0.01). Significant skeletal muscle loss is experienced early during treatment in AYA cancer patients. Reductions in skeletal muscle blood flow may be a key contributing factor to anthracycline doxorubicin induced skeletal muscle loss.

Patient Reported Fatigue Among Adolescent and Young Adult Cancer Patients Compared to Non-Cancer Patients: A Systematic Review and Meta-Analysis.

Adolescent and young adult (AYA) cancer patients and survivors are a growing population due to more frequent diagnoses and improved survival. Fatigue is a common symptom experienced by cancer patients and it is often missed by health care professionals. Patient reported outcome measures (PROMs) can assist in evaluating patient reported fatigue. This systematic review aims to determine if AYA cancer patients report more fatigue than AYAs who have not been diagnosed with cancer. We used a subset of articles from a larger review that searched PubMed, EMBASE, CINAHL, and PsycINFO to determine which PROMs and domains are currently being used to evaluate AYA cancer. This study identified 175 articles related to PROMs in the AYA cancer population. Articles with PROMs reporting on fatigue/vitality were used in this review. From the original 175 articles, we identified 8 fatigue/vitality articles for this review. All eight articles found an increase in fatigue/decrease in vitality in the AYA cancer population compared to healthy controls. A meta-analysis was performed on four articles that used the same PROM tool (EORTC QLQ-C30). This found a statistically significant and clinically meaningful increase in mean fatigue of 12.5 95% confidence interval: 3.3-21.8 points (scale 0-100, higher number indicates more fatigue) in the AYA cancer group compared to healthy noncancer controls. Fatigue in the AYA cancer population is a significant issue, it is often undetected and underreported, and early interventions are needed to prevent the negative subsequent sequelae.

Sexual health outcomes among adolescent and young adult cancer patients: a systematic review and meta-analysis.

Sexual health outcomes (SHO), which entail the physical, emotional, mental, and social impacts, are an important consideration for adolescent and young adults (AYA, ages 15-39) affected by cancer. The objective of this systematic review and meta-analysis is to summarize the current literature and evaluate AYA cancer impact on SHO. EMBASE and MEDLINE were searched from January 1, 2000 to September 28, 2022 to identify epidemiologic studies that used an analytic observational design, included individuals with AYA cancer and non-cancer control participants, and evaluated SHO. Odds ratios and prevalence ratios were calculated; random effects models were used to obtain pooled measures where possible. Of 2621 articles, 8 were included that investigated 23 SHO in 9038 AYA cancer patients. Based on the sexual response cycle, outcomes were categorized as those occurring among males (desire = 1, arousal = 1, orgasm = 4, other = 3) and females (desire = 2, arousal = 1, orgasm = 2, pain = 6, other = 3). It was feasible to conduct meta-analysis for 3 female SHO and 5 male SHO. There were associations between AYA cancer and 3 SHO: vaginal dryness (pooled odds ratio = 3.94; 95% confidence interval (CI) = 2.02 to 7.70), ejaculatory dysfunction (pooled odds ratio = 3.66; 95% CI = 2.20 to 6.08), and testosterone level (pooled mean difference = -2.56 nmol/liter; 95% CI = -3.46 to -1.66; P = .00001). This study found increased ejaculatory dysfunction and reduced testosterone levels in male AYA cancer patients and increased vaginal dryness in female AYA cancer patients, highlighting the need for sexual health resources in this population.

1694MO Socio-economic consequences among adolescent and young adult cancer patients: A European perspective

1694MO Socio-economic consequences among adolescent and young adult cancer patients: A European perspective

Brain-derived neurotrophic factor as a biomarker in cancer-related cognitive impairment among adolescent and young adult cancer patients

Brain-derived neurotrophic factor (BDNF) improves cognitive function by stimulating neurogenesis and neuroplasticity. We hypothesize that higher plasma BDNF levels are protective against cognitive toxicity among adolescent and young adult cancer patients (15–39 years old). In a prospective, longitudinal study, we recruited 74 newly diagnosed cancer and 118 age-matched non-cancer controls who completed the Cambridge Neuropsychological Test Automated Battery (CANTAB), Functional Assessment of Cancer Therapy-Cognitive Function questionnaire (FACT-Cog) and blood draws. Plasma BDNF was quantified using an enzyme-linked immunosorbent assay. Genomic DNA from buffy coat was genotyped for BDNF Val66Met. Most cancer participants were diagnosed with breast (24%) and head/neck (22%) cancers. After adjusting for sociodemographic variables (age, gender, race, marital status, education years), cancer participants had lower BDNF levels (ng/mL) at baseline (median: 10.7 vs 21.6, p < 0.001) and 6-months post-baseline (median: 8.2 vs 15.3, p = 0.001) compared to non-cancer controls. Through linear mixed modelling adjusted for sociodemographic variables, baseline cognition, fatigue, psychological distress, and time, we observed that among cancer participants, lower baseline BDNF levels were associated with worse attention (p = 0.029), memory (p = 0.018) and self-perceived cognitive abilities (p = 0.020) during cancer treatment. Met/Met was associated with enhanced executive function compared to Val/Val (p = 0.012). Plasma BDNF may serve as a predictive biomarker of cancer-related cognitive impairment.

Proton Therapy in the Adolescent and Young Adult Population.

Adolescent and young adult cancer patients are at high risk of developing radiation-associated side effects after treatment. Proton beam radiation therapy might reduce the risk of these side effects for this population without compromising treatment efficacy. We review the current literature describing the utility of proton beam radiation therapy in the treatment of central nervous system tumors, sarcomas, breast cancer and Hodgkin lymphoma for the adolescent and young adult cancer population. Proton beam radiation therapy has utility for the treatment of certain cancers in the young adult population. Preliminary data suggest reduced radiation dose to normal tissues, which might reduce radiation-associated toxicities. Research is ongoing to further establish the role of proton therapy in this population. This report highlights the potential utility of proton beam radiation for certain adolescent young adult cancers, especially with reducing radiation doses to organs at risk and thereby potentially lowering risks of certain treatment-associated toxicities.

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.

Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents.

Purpose: Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions. This has important implications for how oncofertility discussions may, or may not, involve parents. The aim of this study was to explore oncofertility decision-making and care experiences in a national Australian sample of AYA cancer patients and their parents. Methods: AYAs aged 15-25 years and parents were recruited from 17 cancer care sites and CanTeen Australia as part of a national AYA cancer care study. The cross-sectional survey included open-ended questions regarding oncofertility care experiences. We used reflexive thematic analysis to identify themes. Results: Data were available for 99 AYAs and 111 parents. Four themes were identified: emotional care needs; parent-AYA dynamics including AYA autonomy and agency; decision-making considerations including values and practicalities; and reflections on oncofertility care and follow-up. Both AYAs and parents placed importance on AYA autonomy in fertility decision-making, but many AYAs appreciated the role of parents in providing support and guidance throughout the process. Conclusion: Health care professionals are encouraged to autonomously engage AYAs around fertility decision-making, while concurrently offering opportunities that promote parental support. Better psychological support and follow-up oncofertility care are also needed.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Body image disturbances in adolescent and young adult cancer patients confronting infertility risk and fertility preservation decisions

Purpose Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. Methods AYA cancer patients (n = 27) aged 12–25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. Results Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. Conclusions AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.