Young Cancer Patients Research Articles

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.

Readiness for return-to-work model-based analysis of return-to-work perception of young and middle-aged colorectal cancer patients with stoma in the early postoperative period: a descriptive qualitative study.

With an increase in the number of young and middle-aged colorectal cancer (CRC) patients with stoma, understanding their perception about return to work (RTW) in the early postoperative period can guide medical professionals to provide appropriate rehabilitation strategies, which can eventually improve patients' readiness for return to work (RRTW) and enable them to achieve final rehabilitation. The present study aimed to investigate the RTW-related perceptions and considerations of young and middle-aged CRC patients with stoma after surgery. From 2021 to 2022, we conducted a basic interpretive qualitative study involving semi-structured interviews with 17 CRC patients with stoma in two grade 3A hospitals in China. This study was based on the RRTW model. Data collection was continued until data saturation was reached, and all data were transcribed verbatim and analyzed by Colaizzi's phenomenological method. The following three key themes were identified: (1) self-efficacy; (2) decision balance; and (3) change process. Eight subthemes were formulated that were included within the respective main themes. In light of the current low self-efficacy and unsatisfactory willingness of patients with stoma about RTW, we suggest that medical staff should implement cognitive intervention and supportive interventions to improve self-efficacy, actively enhance the motivation of patients for RTW, and simultaneously resolve the pertinent difficulties; this could help patients to accept the positive change process and enable their successful transition from a change process to RTW.

Career disruption and limitation of financial earnings due to cancer.

This study investigated how cancer diagnosis and treatment lead to career disruption and, consequently, loss of income and depletion of savings. This study followed a qualitative descriptive design that allowed us to understand the characteristics and trends of the participants. Patients recruited (n = 20) for this study were part of the University of Kansas Cancer Center patient advocacy research group (Patient and Investigator Voices Organizing Together). The inclusion criteria were that participants must be cancer survivors or co-survivors, be aged 18 years or older, be either employed or a student at the time of cancer diagnosis, have completed their cancer treatment, and be in remission. The responses were transcribed and coded inductively to identify themes. A thematic network was constructed based on those themes, allowing us to explore and describe the intricacies of the various themes and their impacts. Most patients had to quit their jobs or take extended absences from work to handle treatment challenges. Patients employed by the same employer for longer durations had the most flexibility to balance their time between cancer treatment and work. Essential, actionable items suggested by the cancer survivors included disseminating information about coping with financial burdens and ensuring that a nurse and financial navigator were assigned to every cancer patient. Career disruption is common among cancer patients, and the financial burden due to their career trajectory is irreparable. The financial burden is more prominent in younger cancer patients and creates a cascading effect that financially affects close family members.

Effect of a web-based fertility preservation training program for medical professionals in Japan.

Our web-based training program called "Educating Medical Professionals about Reproductive Issues in Cancer Healthcare" aims to help healthcare professionals communicate promptly with patients and survivors who are adolescents and young adults, with information pertinent to reproductive health issues such as the risk of infertility and fertility preservation. The study participants were professional healthcare providers, including physicians, nurses, pharmacists, social workers, midwives, psychologists, laboratory technicians, genetic counselors, and dieticians. Pre- and post- and 3-month follow-up tests consisting of 41 questions were administered to measure changes in knowledge and confidence. The participants also received a follow-up survey that covered confidence, communication techniques, and practice habits. A total of 820 healthcare providers participated in this program. The mean total score from the pre-test to the post-test grew significantly (p < 0.01), and participants' self-confidence increased. In addition, there was a change in the behavior of healthcare providers, who began asking about patients' marital status and parity. Our web-based fertility preservation training program improved knowledge and self-confidence regarding fertility preservation issues among healthcare providers caring for adolescents and young adult cancer patients and survivors.

The relationships between loneliness and mental and physical health are moderated by the tendency for interpersonal victimhood: A study of young adult cancer patients

Objectives To assess whether loneliness is inversely related to young adult cancer patients’ subjective reports of mental and physical health, and to explore whether such inverse relationships are moderated by young adult cancer patients’ tendency for interpersonal victimhood. Methods Young adult cancer patients (N = 140) ranging in age from 19–39 years completed two questionnaires distributed three months apart. Patients reported loneliness, their tendency for interpersonal victimhood, and mental and physical health. Hypotheses were tested using the PROCESS macro for SPSS, which tests for main effects and moderation effects. Findings Loneliness was inversely related to mental health, but there was no main effect of loneliness on physical health. Tendency for interpersonal victimhood significantly moderated the relationships between loneliness and both mental and physical health, such that a greater tendency for interpersonal victimhood strengthened the inverse relationships between loneliness and both mental and physical health. Conclusion Loneliness continues to be an important predictor of mental health for young adult cancer patients, and this relationship is strengthened when a patient has a greater tendency for interpersonal victimhood. Health care providers, family members, and other supporters should monitor the quantity and quality of patients’ relationships with others and also facilitate conversations that can address aspects of the tendency for interpersonal victimhood, such as rumination or the need for recognition.

The presence of senescent peripheral T-cells is negatively correlated to COVID-19 vaccine-induced immunity in cancer patients under 70 years of age.

Cancer patients are at risk of severe COVID-19 infection, and vaccination is recommended. Nevertheless, we observe a failure of COVID-19 vaccines in this vulnerable population. We hypothesize that senescent peripheral T-cells alter COVID-19 vaccine-induced immunity. We performed a monocentric prospective study and enrolled cancer patients and healthy donors before the COVID-19 vaccination. The primary objective was to assess the association of peripheral senescent T-cells (CD28-CD57+KLRG1+) with COVID-19 vaccine-induced immunity. Eighty cancer patients have been included, with serological and specific T-cell responses evaluated before and at 3 months post-vaccination. Age ≥ 70 years was the principal clinical factor negatively influencing the serological (p=0.035) and specific SARS-CoV-2 T-cell responses (p=0.047). The presence of senescent T-cells was correlated to lower serological (p=0.049) and specific T-cell responses (p=0.009). Our results sustained the definition of a specific cut-off for senescence immune phenotype (SIP) (≥ 5% of CD4 and ≥ 39.5% of CD8 T-cells), which was correlated to a lower serological response induced by COVID-19 vaccination for CD4 and CD8 SIPhigh (p=0.039 and p=0.049 respectively). While CD4 SIP level had no impact on COVID-19 vaccine efficacy in elderly patients, our results unraveled a possible predictive role for CD4 SIPhigh T-cell levels in younger cancer patients. Elderly cancer patients have a poor serological response to vaccination; specific strategies are needed in this population. Also, the presence of a CD4 SIPhigh affects the serological response in younger patients and seems to be a potential biomarker of no vaccinal response.

Differences in oncofertility beliefs, knowledge, and practice between medical oncologists and advanced practice providers: Identifying quality improvement targets.

e18747 Background: Despite the deleterious effects of systemic cancer treatment on fertility, many young adult cancer patients do not receive fertility preservation. Historically, oncofertility was discussed by the medical oncologist (MO), but an increasing advanced practice provider (APP) oncology workforce provides opportunities for quality improvement (QI) in oncofertility care. To identify levers for QI interventions, we explored how fertility beliefs, knowledge, and practice of MOs differ from APPs. Methods: MOs and APPs working in inpatient, outpatient, academic and community clinical settings were identified from providers at The Jonsson Comprehensive Cancer Center (JCCC). Participants completed an online survey prior to a fertility preservation seminar. Survey questions queried beliefs about fertility preservation, knowledge about guideline recommendations, and individual fertility practices in the 3 months prior to survey completion. Responses were collected anonymously through a HIPAA-compliant web platform. Pearson chi-squared and two-sample T tests were used for statistical comparisons between MOs and APPs using STATA v15.1. This study received exempt status from the University of California Los Angeles (UCLA) Institutional Review Board. Results: 32 (52.5%) APPs and 29 (47.5%) MOs completed the survey. APPs were younger than MOs (28% vs. 14% were 30-39 years, p = 0.072) and more frequently female (91% vs. 38%, p &lt; 0.001). Practice specialties varied equally between both groups and they had similar distribution of post-training oncology experience. Participants saw an average of 6.0 (APP) and 5.7 (MO) new cancer patients of reproductive age per month. While APPs and MOs reported concern about the effects of cancer treatment on fertility, APPs were more likely to agree with the statement “Offering fertility preservation to patients before cancer therapy compromises their oncological treatment” than MOs (44% vs. 31%, p = 0.047). APPs reported less familiarity with fertility preservation guidelines (scale 0-10, mean 4.3 vs. 5.8, p = 0.013) and MOs were more comfortable discussing specific fertility preservation techniques. There were no significant differences in referral practices. In the 3 months prior to survey, MOs reported having fertility discussions more frequently than APPs (52% vs 28%, p = 0.047) and more regularly had discussions before treatment initiation (97% vs. 78%, p = 0.033). Conclusions: Improving oncofertility care for young cancer patients is an important quality metric. This exploratory study demonstrated significant differences in beliefs, knowledge, and practice between MOs and APPs regarding fertility preservation for cancer patients. These results will shape our future QI initiatives, which will target system, practice, and education with a specific focus on non-MO providers.

Transcriptional metabolic profiling young onset colorectal cancer (CRC) patients.

3509 Background: Patients diagnosed with colorectal cancer (CRC) at age &lt; 50 years typically present with more advanced disease, resulting in poor therapeutic response and clinical outcomes. Therefore, there is an unmet need to understand the differences in transcriptional profiles between younger (&lt;50) and older ( &gt; 50) CRC patients. Methods: Using TCGA (n = 397; &gt; 50 = 349; &lt; 50 = 48) and Oncology Research Information Exchange network (ORIEN) CRC datasets (n = 460; &gt; 50 = 364 ; &lt; 50 = 96), patients were separated into younger and older populations. Baseline characteristics of the patients in this analysis are provided in the accompanying table. Subsequently, their transcriptional profiles were compared and assessed via differential gene expression analysis (DESeq2), gene set enrichment analysis (GSEA), immune deconvolution (TIMER2.0), and metabolic pathway analysis (MetaPhOR). These pathways were then mapped to assess transcriptional dysregulation, and patterns of predicted metabolic flux. Results: Comparisons of older and younger groups revealed a large number of significantly differentially expressed transcripts (n = 2629), enrichment in younger groups of metabolic pathways (amino acids and lipids), oncogenes (MYC targets and NRAS targets), and cellular processes. In the older group we found enrichment of methylation and histone modification, immune response, and other metabolic pathways, like androgens. Metabolic pathway analysis revealed consistent alterations in steroid hormone metabolism and kynurenine metabolism, which were largely upregulated in the over 50 group. Additionally, pathways associated with response to both CTLA4 and PDL1 treatment were largely upregulated in the over 50 group. This transcriptional signature may be associated with a pre-disposition to different clinical outcomes and therapeutic response for agents targeting these pathways. Conclusions: Overall, this study has revealed differences in transcriptional metabolic profiles and other drivers of disease, as well as immune profiles, between younger and older CRC populations. This biology should be explored in the future, as new avenues for treatment in younger CRC populations. [Table: see text]

Social determinants of health burden among adolescent and young adult cancer patients and impact on overall survival.

12017 Background: The 5-year survival rates for adolescents and young adults (AYA) with cancer have steadily improved, yet disparities by race/ethnicity persist. The drivers of these disparities remain unclear. Neighborhood socioeconomic deprivation has been linked to adverse health outcomes independent of the effects of individual-level measures of social determinants of health (SDOH). We evaluated the impact of neighborhood SDOH on overall survival (OS) in a diverse AYA cancer patient population treated in a single academic setting. Methods: This study utilized a multi-ethnic cohort of AYA cancer survivors (N=10,261) diagnosed between ages 15-39 seen at MD Anderson Cancer Center between 2000 and 2016. Patient demographics, zip code at presentation, cancer characteristics, and follow-up were obtained from our institutional tumor registry. Zip codes were linked to Area Deprivation Index (ADI) values, a validated neighborhood-level SDOH measure, with higher ADI representing worse SDOH. Results: The cohort included 6,361 (62%) non-Hispanic White, 1,112 (10.8%) non-Hispanic Black, and 2,133 (20.8%) Hispanic AYA cancer patients, with 655 (6.4%) of other ethnicities or missing information. The mean ADI value was significantly higher (p&lt;0.05) for Black (61.7) and Hispanic (65.3) patients, compared to White (51.2) patients. Analysis of ADI by cancer type showed significant differences, mainly driven by the significantly higher ADI in patients with cervical cancer (62.3) than other cancer types. In contrast, AYA patients diagnosed with breast cancer (53.0) and CNS tumors (52.9) resided in neighborhoods with the lowest ADI values. ADI was a significant predictor of OS overall. In multivariable models that included gender, age at diagnosis, cancer diagnosis, and race/ethnicity, risk of death for AYA cancer patients residing in neighborhoods with ADI in the highest quartile was greater than that for patients in the lowest quartile (HR: 1.09, 95% CI: 1.00-1.19, p=0.043). Conclusions: Our results in this large multi-ethnic cohort indicate that non-White AYA patients with cancer more commonly live in neighborhoods associated with higher ADI compared to their White counterparts. Even when treated in the same academic setting, AYA cancer patients with higher ADI experienced worse OS across cancers. Although the magnitude of the effect was moderate, the presence of this effect within a tertiary cancer center with existing barriers to care suggests that ADI is a meaningful risk factor impacting survival. Further analysis is warranted to determine the generalizability of these findings to the patient population more broadly. However, the results provide intriguing evidence for potential interventions aimed at supporting AYA cancer patients from disadvantaged backgrounds.

Association between social determinants of health and outcomes among young patients with prostate cancer.

e18500 Background: Influence of Social Determinants of Health (SDHs) on Outcomes among Young Patients with Prostate Cancer. SDHs significantly influence prostate cancer patients' incidence, presentation, and outcomes. However, how these factors affect outcomes in younger patients with prostate cancer has been understudied in the literature. Prostate cancer is the commonest cancer among men in the US, and studying these factors will further enhance efforts to develop appropriate public health strategies to combat the disease. Aim: To determine the influence of patients' race and SDHs on outcomes among young patients with prostate cancer. Methods: Utilizing data from the National Cancer Database (NCDB), we conducted a retrospective analysis of all patients with a primary diagnosis of prostate cancer from January 2004 to December 2018. The outcome measures were diagnosis to definitive treatment time (days), length of hospitalization (days), and overall survival. We determined the influence of patients’ race/ethnicity, insurance type, residence annual median income (median household income for each patient's area of residence), and residence education level (defined as the proportion of adults ≥25 years who did not complete high school in the patients' zip code) on the overall survival among young patients with prostate cancer. Results: There were 843,511 cases of prostate malignancy reported in the National Cancer Database between 2004 and 2018. About 6.3% of these patients were younger than 50 years (N=52,890). Among the younger patients, 74.0% were whites, and 21.3% were Blacks. These compare to the control of adults older than 50 years, with 84.3% whites and only 11.3% Blacks. On multivariate analysis, Black patients have a longer diagnosis to definitive treatment time and overall longer hospital stay but no racial disparity in overall survival. Significant predictors of overall survival among the young prostate cancer survivors were patients with private insurance and higher income quintiles (see table). Conclusions: Insurance and income rather than race/ethnicity or education level appear to constitute a significant predictor of survival among young prostate cancer patients in the United States.[Table: see text]

The association between continuity of Medicaid enrollment and cancer survival in young adults diagnosed with cancer.

6538 Background: Disparities in young adult cancer survival between individuals with Medicaid and private insurance have been reported. To further understand the association between insurance-related access to healthcare and young adult cancer survival, we used Surveillance, Epidemiology, and End Results (SEER)-Medicaid linked data to test two hypotheses: 1) Those linked to Medicaid have lower cancer survival than those not linked, and 2) those with discontinuous enrollment in Medicaid around the time of diagnosis have lower survival than those with continuous enrollment. Methods: SEER-Medicaid linked data from 2006 to 2013 were obtained. Follow-up for vital status was through 2018. We included individuals diagnosed with a first malignant primary cancer diagnosed between 20 to 39 years. We excluded individuals who were linked to Medicaid enrollment records in multiple states during the same year. Individuals were defined as Medicaid-linked if they were linked to Medicaid in any U.S. state or the District of Columbia from 2006 to 2013. Medicaid enrollment was classified as continuous (enrolled within both the three months before and after diagnosis) and discontinuous (enrolled only within the 3 months before or after diagnosis or only at diagnosis). We used survival analysis methods including Kaplan-Meier (KM) curves and Cox Proportional Hazards (PH) regression models to evaluate survival differences in association with Medicaid linkage and enrollment timing after adjusting for race and a measure of census tract poverty. Results: Our analytic dataset included 137,259 young adults, among which there were 22,955 cancer deaths. KM curves showed consistently lower survival probabilities over time in young adults who linked vs. those not linked to Medicaid and in those with discontinuous vs. continuous enrollment (p &lt; .0001). Adjusted Cox PH regression models indicated that those who linked to Medicaid had a 2.19 (95% CI 2.14-2.25) times higher hazard of death vs. those who did not link. Those with continuous and discontinuous Medicaid enrollment had a 1.91 (95% CI 1.84 to 1.99) and 3.32 (95% CI 3.19 to 3.45) times higher hazard of death, respectively, vs. those not linked to Medicaid. Similar patterns were consistently observed for specific cancer types. Conclusions: These results confirm an insurance-associated disparity in a national sample of young adult cancer patients and provide additional information on risks in association with Medicaid enrollment continuity. These results further support the critical need for consistent health insurance coverage in young adults and for additional research to understand social, economic, and access-related factors leading to lower survival in the Medicaid population. Lowering administrative burdens for Medicaid enrollment, eligibility, and renewal are potentially important strategies for improving cancer outcomes.

Disparities in cancer care among sexual and gender minority adolescent and young adult patients: A scoping review.

Adolescent and young adult cancer patients (AYAs) who are sexual and gender minorities (SGM) are a rapidly increasing population that experiences unmet cancer-related needs. Despite emerging awareness, little is known about cancer care and outcomes for this vulnerable population. The purpose of this scoping review was to explore current knowledge and gaps in the literature on cancer care and outcomes for AYAs who identify as SGM. We reviewed empirical knowledge on SGM AYAs by identifying, describing, and critically appraising the literature to date. We conducted a comprehensive search on OVID MEDLINE, PsycINFO, and CINAHL in February 2022. Additionally, we developed and piloted a conceptual framework for appraising SGM AYA research. A total of 37 articles were included in the final review. Most studies focused exclusively on SGM-related outcomes as the primary aim of the study (81.1%, n = 30), whereas others included some focus on SGM-related outcomes (18.9%, n = 7). The majority of studies included AYAs as part of a broader age range (86.0%, n = 32), and only a few studies examined exclusively AYA samples (14.0%, n = 5). Gaps in scientific evidence on SGM AYAs were seen across the cancer care continuum. Numerous gaps in knowledge of cancer care and outcomes exist for SGM AYAs diagnosed with cancer. Future efforts should fill this void with high-quality empirical studies that reveal unknown disparities in care and outcomes and are inclusive of the intersectionality of SGM AYAs with other minoritized experiences, thereby advancing health equity in meaningful ways.

Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

Fertility Preservation Knowledge, Attitudes, and Self-Reported Behaviors of Resident Physicians.

Purpose: Fertility preservation (FP) and family building are important considerations for quality survivorship for young cancer patients. Resident physicians across all specialties encounter reproductive-aged cancer patients. The purpose of this study was to assess resident physicians' attitudes and awareness about FP with the goal to identify specific educational gaps to direct future training. Methods: The Institutional Review Board (IRB)-approved anonymous online survey was sent to resident physicians across specialties at three separate academic-affiliated campuses in one state. The survey consisted of three sections: awareness about FP options and knowledge about referral placement, attitudes and comfort levels discussing FP, and practices regarding FP. Data were collected in Qualtrics and analyzed by resident specialty, age, level of training, and gender. Statistical analyses were conducted with Prism. Results: Obstetrics and gynecology residents and fellows were significantly more aware of FP options in cancer patients than their counterparts in other specialties. Postgraduate year (PGY 3) residents and beyond were more aware of at least one male and one female FP option compared with PGY 1 and 2 residents. Of importance, we found that the majority of resident physicians are aware of FP options and the referral process, but they are uncomfortable discussing these techniques with their patients. Conclusion: To provide better education for patients, focus should be on outpatient educational activities for both the health care provider and the patient to facilitate conversation about FP.

Development, Usability Testing, and Implementation Assessment of Cancer Related Infertility Score Predictor, an Online Cancer Related Infertility Risk Counseling Tool.

Purpose: Oncofertility counseling of female cancer patients lacks efficient access to tailored and valid infertility risk estimates to support shared decision-making on fertility preservation treatments. The objective was to develop, conduct user-centered design, and plan clinic-based implementation of the Cancer Related Infertility Score Predictor (CRISP), a web-based tool to support infertility risk counseling. Methods: Using a mixed methods design, literature review was undertaken to abstract data on infertility, primary ovarian insufficiency, and amenorrhea risks of common cancer treatments. The CRISP website was programmed to take user input about patient ages and cancer treatments and generate a risk summary. Using user experience methodology and semistructured interviews, usability testing and implementation assessment were conducted with 12 providers recruited from 5 medical centers in Southern California. Results: The web-based CRISP tool encompasses infertility risk data for 60 treatment regimens among 10 cancer types. Usability testing demonstrated that the tool is intuitive and informed minor modifications, including adding crowd-sourced submission of additional cancer treatments. Participants rated the tool as credible, advantageous over current provider methods to ascertain infertility risks, and useful for tailoring treatment planning and counseling patients. A key barrier was lack of information on some cancer treatments. Fit within clinical workflow was feasible, particularly with electronic health record integration. Conclusions: The novel, web-based CRISP tool is a feasible, acceptable, and appropriate tool to address provider knowledge gap about cancer related infertility risks and use for patient counseling. CRISP has significant potential to support tailored oncofertility counseling in the heterogeneous young cancer patient population.

National oncofertility registries around the globe: a pilot survey.

Oncofertility is an emerging discipline which aims to preserve fertility of young cancer patients. As fertility preservation services have become increasingly available to cancer patients in many countries around the globe, it is crucial to establish a foundation of collaborative reporting to continuously monitor and assess oncofertility practices. This survey study investigates the current global landscape of official national oncofertility registries, a vital tool which allows for surveillance of the field. An online pilot survey was conducted to give the opportunity to report official national oncofertility registries available in 2022. Survey questions covered the availability of official national registries for oncofertility as well as the official national registries for cancer and assisted reproductive technologies. Participation in the survey was voluntary, anonymous and for free. According to our online pilot survey, responses were collected from 20 countries including Argentina, Australia, Brazil, Canada, Chile, China, Egypt, Germany, Greece, India, Japan, Kenya, Philippines, Romania, South Africa, Thailand, Tunisia, UK, USA & Uruguay. Only 3 out of the 20 surveyed countries have well-established official national oncofertility registries; and include Australia, Germany & Japan. The Australian official national oncofertility registry is part of Australasian Oncofertility Registry that also includes New Zealand. The German official national oncofertility registry is part of FertiPROTEKT Network Registry for German speaking countries that also includes Austria & Switzerland. The Japanese official national oncofertility registry includes Japan only and called Japan Oncofertility Registry (JOFR). A supplementary internet search confirmed the aforementioned results. Therefore, the final list of countries around the globe that have official national oncofertility registries includes Australia, Austria, Germany, Japan, New Zealand, and Switzerland. Some other countries such as the USA and Denmark are on their way to establish official national registries for oncofertility care. Although oncofertility services are expanding globally, very few countries have well-established official national oncofertility registries. By reviewing such a global landscape, we highlight the urgent need for having a well-established official national oncofertility registry in each country to monitor oncofertility services in a way that best serves patients.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

Factors associated with reproductive concerns among young female patients with colorectal cancer: A cross-sectional study.

The aim of this study was to describe the prevalence of reproductive concerns among young female patients with colorectal cancer and explore the associated factors. With the trend of longer survival and younger age at diagnosis of colorectal cancer patients, reproductive concerns have become increasingly prevalent among young female colorectal cancer patients. Cross-sectional design. The study included 150 young female patients with colorectal cancer who completed cancer treatment at 2 hospitals in Guangzhou, China, between November 2020 and December 2021 completed an investigation comprising A general questionnaire, The Reproductive Concerns After Cancer scale, The Family Adaptation and Cohesion Evaluation Scale II and unmet fertility information needs questionnaire. Multivariable linear regression analysis was performed in order to identify factors that influence reproductive concerns. This study was prepared and is reported according to the STROBE checklist. The mean (SD) score on the Reproductive Concerns After Cancer scale was 54.78 ± 8.97. The highest score was for the children's health subscale (3.84 ± .92) and the lowest was for acceptance (2.24 ± .70). Multiple regression analysis showed that patients with fewer children, female children, lower education level (less than undergraduate degree), earlier disease stage, lower family function and higher unmet need for fertility information had more reproductive concerns, which explained 26.9% of the total variation of the model. The patients with fewer children, female children, low cultural degree (less than bachelor), early clinical patients, poorer family function and higher unmet fertility information needs had higher reproductive concerns. These findings can guide the development of interventions to mitigate reproductive concerns, including understand and meet their fertility information needs, improve the level of family function. Survey questionnaires were completed by participants among young female with colorectal cancer in this study.

Nonsupport Experiences of Young Adult Cancer Patients: Prevalence, Acceptability, and Outcomes of Not Receiving Support

ABSTRACT This study provides foundational data regarding instances of nonsupport (i.e. instances when support was expected from someone but not received) in the cancer context. In a sample of 205 young adult cancer patients from 22 countries, approximately three out of every five patients reported having experienced nonsupport at some point during their cancer journey. Men and women patients were approximately equally as likely to have experienced nonsupport and were approximately equally likely to be recalled by a cancer patient as a nonsupporter. Results showed that patients who had experienced nonsupport reported worse mental and physical health, greater depression, and greater loneliness than those who had not experienced an instance of nonsupport. Patients were also presented with a previously published list of 16 reasons why people choose to forgo communicating support to cancer patients, and patients rated each reason’s acceptability. Nonsupport reasons that assumed communicating support would create a burden for the patient (e.g. providing support would create a privacy issue; the supporter feared losing control of their own emotions) were rated as more acceptable. Reasons involving the nonsupporter making assumptions or decisions about the broader social support process were seen as less acceptable (e.g. communicating support does not help; assuming support is not desired). Together, these results demonstrate the prevalence and impact of nonsupport on cancer patients’ health outcomes and provide justification for nonsupport as an important avenue for future social support research.

Understanding Reproductive Health among Survivors of Paediatric and Young adults (URHSPY) cancers in Uganda: A mixed method study protocol.

Although reproductive failure after cancer treatment in children and young adults has been extensively described in high-income countries, there is a paucity of data in low-income settings. In addition, patient, parent, or health worker experiences, perspectives, and attitudes toward the risk of reproductive failure among young cancer patients in these settings are unknown. This study will describe the extent of reproductive morbidity associated with cancer treatment among childhood and young adult cancer survivors in Uganda. In addition, we aim to explore the contextual enablers and barriers to addressing cancer treatment-related reproductive morbidity in Uganda. This is an explanatory sequential mixed-method study. The quantitative phase will be a survey among childhood and young adult cancer survivors recruited from the Kampala Cancer Registry (KCR). The survey will utilize a Computer Assisted Telephone Interview (CATI) platform on a minimum of 362 survivors. The survey will obtain information on self-reported reproductive morbidity and access to oncofertility care. The qualitative phase will use grounded theory to explore contextual barriers and enablers to addressing reproductive morbidity associated with cancer treatment. The quantitative and qualitative phases will be integrated at the intermediate and results stage. Results from this study will inform the development of policy, guidelines, and programs supporting reproductive health among childhood and young adult cancer survivors.