Young Adult Cancer Research Articles

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.

Impact of flexible work arrangements on job resignation after cancer diagnosis among Japanese young adult cancer survivors.

Many workers had flexible work arrangements during the COVID-19 pandemic. This study aimed to identify the association between flextime and remote working and job resignation among Japanese young adult cancer survivors after diagnosis. This cross-sectional observational study was conducted using an online survey with 401 Japanese young adult cancer survivors diagnosed with adult-onset cancer and aged 20-39years at the time of the survey in January 2022. A multivariable Cox regression analysis was performed to analyze the impact of flextime and remote working on job resignation. In the sample, 264 participants (65.8%) were female, and 185 (46.1%) had been diagnosed with cancer between 1 and 5years ago. After adjusting for potential confounders, the multivariable Cox regression analysis revealed that young adult cancer survivors using remote working only (HR 0.44, 95% CI 0.21-0.96, p = 0.04) and both flextime and remote working (HR 0.37, 95% CI 0.21-0.64, p < 0.01) experienced a lower risk of job resignation after cancer diagnosis compared to those who did not use flextime and remote working. Young adult cancer survivors who used remote working only or remote working combined with flextime could reduce their risk of job resignation after a cancer diagnosis. This study showed that having the option of remote working can be important for young adult cancer survivors' continuing employment. Furthermore, social welfare systems need to promote a workplace culture and climate that allows remote working.

Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study

PurposeA cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality. MethodsCanadian YAs (n = 359) diagnosed with cancer between ages 15–39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use. ResultsParticipants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04). ConclusionPsychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery.

Gaps in Adolescent and Young Adult Cancer Education in Oncology Fellowship Training.

Purpose: Adolescents and young adults (AYAs, 15-39 years) with cancer experience disparities in care and outcomes compared with older/younger patients. AYAs receive care from medical and pediatric oncologists, however, little is known about the extent of training fellows receive. This needs assessment evaluating current AYA oncology (AYA-O) education in pediatric and medical oncology fellowship programs to identify knowledge gaps for curricular development. Methods: An anonymous, cross-sectional, web-based survey developed by pediatric and medical oncologists was sent to medical (n = 178) and pediatric (n = 119) hematology/oncology program directors (PDs) at 251 sites in the United States. PDs were asked to participate and distribute the survey to their fellows. Survey questions addressed current AYA curriculum, provider comfort, and priorities for future AYA educational content. Results: Participants from 69/251 programs responded (program response rate = 27%), including 51 PDs (32 pediatric, 19 medical oncology) and 58 fellows (33 pediatric, 25 medical oncology). Eighty-five percent of PDs (44/51) reported lacking formal AYA curricula. Of these, 80% (35/44) offer some topic-specific lectures, while 20% (9/44) provide little/no education for any topics. For nearly all topics, at least 45% of combined respondents reported little/no education. Respondents believe AYA topics are important for inclusion in future curricula. The most important topics for inclusion reported were oncofertility (82%), survivorship (78%), and communication (77%). Conclusions: There are large and actionable gaps in AYA-O education during fellowship training. Efforts are underway to develop AYA-O curriculum to provide both medical and pediatric oncology fellows with the knowledge and skills required to provide optimal AYA care.

Perspectives From Adolescent and Young Adult Cancer Survivors for a Planned Nurse-Patient Dyadic Storytelling Intervention.

AYA cancer survivors participated in cross-sectional qualitative interviews to provide feedback on the nurse-patient storytelling intervention model. Qualitative content analysis was used to interpret and categorize the data. Barriers and facilitators of the intervention emerged. Themes related to barriers included (a) the disadvantages of an online program, (b) the limitations of the in-person program, (c) interacting with nurses, (d) sharing personal stories with others, and (e) the timing of the program. Themes regarding facilitators included (a) benefits to AYA with cancer, (b) benefits to nurses, (c) benefits of online/in-person programs, and (d) willingness to participate. Conclusions: AYA with cancer may benefit from the nurse-patient dyadic storytelling intervention. Developing innovative methods to optimize and customize interventions based on preferences is essential. Future research should involve nurse feedback and tailored approaches for AYA with cancer.

The Lived Experience of Young Adult Cancer Survivors after Treatment: A Qualitative Study.

The purpose of this qualitative study was to compare the lived experiences among extended (one year or less post-treatment) and long-term (three years or more post-treatment) young adult (YA) cancer survivors (ages 18-39 years old). Two trained researchers conducted semi-structured interviews inquiring about the overall lived experience of N = 24 YA cancer survivors (n = 12 extended and n = 12 long-term). The same two researchers independently completed line-by-line coding and thematic content analysis. Interviews lasted an average of 41 min and revealed common themes of symptoms, psychosocial concerns, coping, and changes in health behaviors (e.g., nutrition and physical activity). All participants discussed symptoms impairing their quality of life and affecting their fear of recurrence. Specific psychosocial concerns among extended survivors were appearance-related (e.g., hair loss, weight gain) whereas concerns among long-term survivors included job loss, fertility, and financial stress. Coping strategies described by extended survivors were often distraction-based (e.g., watching television to "escape"), while long-term survivors described more active coping strategies (e.g., yoga, meditation, and seeking support from family and friends). Most survivors reflected on limited physical activity or unhealthy eating during treatment; however, nearly all declared healthy eating and physical activity post-treatment to improve well-being. YA cancer survivors report differing symptoms, psychosocial concerns, and coping strategies across time since treatment. While survivors reported challenges with physical activity and nutrition during treatment, nearly all emphasized the importance of these health behaviors post-treatment. Thus, health behavior interventions could represent a preferred approach to address post-treatment challenges and improve quality of life for YA survivors.

Evaluation of cardiovascular risk factors in long-term survivors of adult- and childhood-onset brain tumours: a pilot study.

Survivors of childhood brain tumours (SCBT) and teenage and young adult cancer survivors have an adverse cardiovascular risk profile, which translates into an increased vascular mortality. Data on cardiovascular risk profiles in SCBT are limited, and furthermore, there are no data in adult-onset (AO) brain tumours. methods: Fasting lipids, glucose, insulin, 24-h blood pressure (BP), and body composition were measured in 36 brain tumour survivors (20 AO; 16 childhood-onset (CO)) and 36 age- and gender-matched controls. Compared with controls, patients had elevated total cholesterol (5.3 ± 1.1 vs 4.6 ± 1.0 mmol/L, P = 0.007), LDL-C (3.1 ± 0.8 vs 2.7 ± 0.9 mmol/L, P = 0.011), insulin (13.4 ± 13.1 vs 7.6 ± 3.3 miu/L, P = 0.014), and increased insulin resistance (homeostatic model assessment for insulin resistance (HOMA-IR) 2.90 ± 2.84 vs 1.66 ± 0.73, P = 0.016). Patients showed adverse body composition, with increased total body fat mass (FM) (24.0 ± 12.2 vs 15.7 ± 6.6 kg, P < 0.001) and truncal FM (13.0 ± 6.7 vs 8.2 ± 3.7 kg, P < 0.001). After stratification by timing of onset, CO survivors showed significantly increased LDL-C, insulin, and HOMA-IR compared with controls. Body composition was characterized by the increased total body and truncal FM. Truncal fat mass was increased by 84.1% compared with controls. AO survivors showed similar adverse cardiovascular risk profiles, with increased total cholesterol and HOMA-IR. Truncal FM was increased by 41.0% compared with matched controls (P = 0.029). No difference in mean 24-h BP was noted between patients and controls irrespective of the timing of cancer diagnosis. The phenotype of both CO and AO brain tumour survivors is characterized by an adverse metabolic profile and body composition, putatively placing long-term survivors at increased risk of vascular morbidity and mortality.

Analysis of intercellular communication in the osteosarcoma microenvironment based on single cell sequencing data

Osteosarcoma (OS) is the most common primary bone cancer in children and young adults, patient survival rates have not improved in recent decades. To further understand the interrelationship between different cell types in the tumor microenvironment of osteosarcoma, we comprehensively analyzed single-cell sequencing data from six patients with untreated osteosarcoma. Nine major cell types were identified from a total of 46,046 cells based on unbiased clustering of gene expression profiles and canonical markers. Osteosarcoma from different patients display heterogeneity in cellular composition. Myeloid cells were the most commonly represented cell type, followed by osteoblastic and TILs. Copy number variation (CNV) results identified amplifications and deletions in malignant osteoblastic cells and fibroblasts. Trajectory analysis based on RNA velocity showed that osteoclasts in the OS microenvironment could be differentiated from myeloid cells. Furthermore, we explored the intercellular communications in OS microenvironment and identified multiple ligand-receptor pairs between myeloid cells, osteoblastic cells and their cells, including 21 ligand-receptor pair genes that significantly associated with survival outcomes. Importantly, we found chemotherapy may have an effect on cellular communication in the OS microenvironment by analyzing single-cell sequencing data from seven primary osteosarcoma patients who received chemotherapy. We believe these observations will improve our understanding of potential mechanisms of microenvironment contributions to OS progression and help identify potential targets for new treatment development in the future.

Assessment of longitudinal changes in body composition of children with lymphoma and rhabdomyosarcoma.

Studies examining changes in skeletal muscle and adipose tissue during treatment for cancer in children, adolescents, and young adults and their effect on the risk of chemotherapy toxicity (chemotoxicity) are limited. Among 78 patients with lymphoma (79.5%) and rhabdomyosarcoma (20.5%), changes were measured in skeletal muscle (skeletal muscle index [SMI]; skeletal muscle density [SMD]) and adipose tissue (height-adjusted total adipose tissue [hTAT]) between baseline and first subsequent computed tomography scans at the third lumbar vertebral level by using commercially available software. Body mass index (BMI; operationalized as a percentile [BMI%ile]) and body surface area (BSA) were examined at each time point. The association of changes in body composition with chemotoxicities was examined by using linear regression. The median age at cancer diagnosis of this cohort (62.8% male; 55.1% non-Hispanic White) was 12.7 years (2.5-21.1 years). The median time between scans was 48days (range, 8-207 days). By adjusting for demographics and disease characteristics, this study found that patients undergo a significant decline in SMD (β ± standard error [SE]=-4.1±1.4; p<.01). No significant changes in SMI (β ± SE=-0.5±1.0; p=.7), hTAT (β ± SE=5.5±3.9; p=.2), BMI% (β ± SE=4.1±4.8; p=.3), or BSA (β ± SE=-0.02±0.01; p=.3) were observed. Decline in SMD (per Hounsfield unit) was associated with a greater proportion of chemotherapy cycles with grade ≥3 nonhematologic toxicity (β ± SE=1.09±0.51; p=.04). This study shows that children, adolescents, and young adults with lymphoma and rhabdomyosarcoma undergo a decline in SMD early during treatment, which is associated with a risk of chemotoxicities. Future studies should focus on interventions designed at preventing the loss of muscle during treatment. We show that among children, adolescents, and young adults with lymphoma and rhabdomyosarcoma receiving chemotherapy, skeletal muscle density declines early during treatment. Additionally, a decline in skeletal muscle density is associated with a greater risk of nonhematologic chemotoxicities.

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.

Cancer incidence and type of treatment hospital among children, adolescents, and young adults in Japan, 2016-2018.

Cancer in children, adolescents, and young adults (AYAs) although rare, is the leading disease-specific cause of death in Japan. This study aims to investigate cancer incidence and type of treatment hospital among children and AYAs in Japan. Cancer incidence data (2016-2018) for those aged 0-39 years were obtained from the Japanese population-based National Cancer Registry. Cancer types were classified according to the 2017 update of the International Classification of Childhood Cancer (Third Edition), and AYA Site Recode 2020 Revision. Cases were also categorized into three groups: those treated at core hospitals for pediatric cancer treatment (pediatric cancer hospitals [PCHs]), those treated at designated cancer care hospitals, and those treated at nondesignated hospitals. The age-standardized incidence rate was 166.6 (per million-person years) for children (age 0-14 years) and 579.0 for AYAs (age 15-39 years) (including all cancers and benign or uncertain-behavior central nervous system [CNS] tumors). The type of cancer varied with age: hematological malignancies, blastomas, and CNS tumors were common in children under 10 years, malignant bone tumors and soft tissue sarcomas were relatively common in teenagers, and in young adults over 20 years, carcinomas in thyroid, testis, gastrointestinal, female cervix, and breast were common. The proportion of cases treated at PCHs ranged from 20% to 30% for children, 10% or less for AYAs, and differed according to age group and cancer type. Based on this information, the optimal system of cancer care should be discussed.

GALNT1 Expression Is Associated with Angiogenesis and Is a Prognostic Biomarker for Breast Cancer in Adolescents and Young Adults (AYA).

It is well established that genetic information differs amongst the adolescent and young adult population (AYA) and older patients. Although several studies on genetic information have been conducted, no current prognostic biomarker exists to help differentiate survival outcomes amongst AYA patients. The GALNT family of genes have been associated with several cancer etiologies, such as the Tn antigen and epithelial-mesenchymal transition (EMT); however, the clinical significance of GALNT1 expression in breast cancer (BC) remains unclear. We investigated the clinical relevance of GALNT1 expression in BC using two large independent cohorts. We found that, although triple-negative BC (TNBC) had the highest GALNT1 expression compared to ER-positive/HER2-negative BC, GALNT1 levels in BC were not associated with clinical aggressiveness, including histological grade, AJCC stage and N-category, and patient survival, consistently in both the METABRIC and GSE96058 cohorts. There was also no biological difference between low- and high-GALNT1 expression BC, as analyzed by hallmark gene sets via gene set enrichment analysis (GSEA). Further, no significant difference was found in GALNT1 expression levels among AYAs and older patients. However, high GALNT1 expression was associated with significantly worse survival in AYA patients, in both cohorts. Furthermore, high GALNT1 expression was found to be an independent factor among several clinical features, including subtype, histological grade, AJCC T and N-category, in AYA patients. In both cohorts, BC with high GALNT1 expression demonstrated low levels of CD8+ T-cell infiltration, but not other anti-cancerous or pro-cancerous immune cells. Finally, high levels of GALNT1 BC demonstrated increased EMT, angiogenesis, and protein secretion in the AYA population, but not in older patients. In conclusion, our findings demonstrate that GALNT1 expression was found to be associated with angiogenesis and EMT, and may have potential as prognostic biomarker, specifically in AYA patients.

Financial hardship differences by LGBTQ+ status among assigned female at birth adolescent and young adult cancer survivors: a mixed methods analysis.

Adolescent and young adult (AYA) cancer survivors are at an elevated risk of financial hardship. However, financial hardship among LGBTQ+ AYAs has not been widely explored. Thus, we used qualitative and quantitative survey data from the Horizon Study cohort to assess financial hardship of AYAs by LGBTQ+ status. Multivariable logit models, predicted probabilities, average marginal effects or differences in predicted probabilities (AME) and 95% confidence intervals (CI) were used to assess the association of LGBTQ+ status and two components of financial hardship: material and psychological. Qualitative content analysis of an open-ended survey question about financial sacrifices was used to describe the third component of financial hardship, behavioral. Among 1,635 participants, 4.3% self-identified as LGBTQ+. Multivariable logit models controlling for demographic factors revealed that LGBTQ+ AYAs had an 18-percentage point higher probability of experiencing material financial hardship (95%CI 6-30%) and a 14-percentage point higher probability of experiencing psychological financial hardship (95%CI 2-26%) than non-LGBTQ+ AYAs. Controlling for economic factors attenuated the association of LGBTQ+ status with psychological financial hardship (AME = 11%; 95%CI -1-23%), while the material financial hardship association remained statistically significant (AME = 14%; 95%CI 3-25%). In the qualitative analysis, LGBTQ+ AYAs frequently reported educational changes and costs (e.g., quitting school), unpaid bills and debt (e.g., medical debt, taking on credit card debt), as well as changes in housing and poor housing conditions (e.g., moving into less expensive house). LGBTQ + targeted and tailored interventions are needed to move toward equity for LGBTQ+ AYAs-an overlooked minority population.

Do discussions of financial burdens decrease long-term financial toxicity in adolescent and young adult cancer survivors?

This study aims to evaluate the associations between patient-provider cost discussions with patient-reported out-of-pocket (OOP) spending and long-term financial toxicity (FT) among adolescent and young adult (AYA; 15-39years old) cancer survivors. Using a cross-sectional survey, we assessed the themes and quality of patient discussions with providers about financial needs and general survivorship preparation, quantified patients' levels of FT, and evaluated patient-reported OOP spending. We determined the association between cancer treatment cost discussion and FT using multivariable analysis. In a subset of survivors (n = 18), we conducted qualitative interviews and used thematic analysis to characterize responses. Two hundred forty-seven AYA survivors completed the survey at a mean of 7years post treatment and with a median COST score of 13. 70% of AYA survivors did not recall having any cost discussion about their cancer treatment with a provider. Having any cost discussion with a provider was associated with decreased FT (β = 3.00; p = 0.02) but not associated with reduced OOP spending (χ2 = 3.77; p = 0.44). In a second adjusted model, with OOP spending included as a covariate, OOP spending was a significant predictor of FT (β = - 1.40; p = 0.002). Key qualitative themes included survivors' frustration about the lack of communication related to financial issues throughout treatment and in survivorship, feeling unprepared, and reluctance to seek help. AYA patients are not fully informed about the costs of cancer care and FT; the dearth of cost discussions between patients and providers may represent a missed opportunity to reduce costs.

Cancer survivorship and risk of pregnancy complications, adverse obstetric outcomes, and maternal morbidities in female adolescents and young adults: a nationwide population-based study from Taiwan.

Cancer treatment in female adolescent and young adult (AYA) cancer survivors (i.e., those diagnosed between 15 and 39 years of age) may adversely affect multiple bodily functions, including the reproductive system. We initially assembled a retrospective, nationwide population-based cohort study by linking data from two nationwide Taiwanese data sets. We subsequently identified first pregnancies and singleton births to AYA cancer survivors (2004-2018) and select AYA without a previous cancer diagnosis matched to AYA cancer survivors for maternal age and infant birth year. The study cohort consisted of 5151 and 51,503 births to AYA cancer survivors and matched AYA without a previous cancer diagnosis, respectively. The odds for overall pregnancy complications (odds ratio [OR], 1.09; 95% confidence interval [CI], 1.01-1.18) and overall adverse obstetric outcomes (OR, 1.07; 95% CI, 1.01-1.13) were significantly increased in survivors compared with matched AYA without a previous cancer diagnosis. Specifically, cancer survivorship was associated with an increased risk of preterm labour, labour induction, and threatened abortion or threatened labour requiring hospitalisation. AYA cancer survivors are at increased risk for pregnancy complications and adverse obstetric outcomes. Efforts to integrate individualised care into clinical guidelines for preconception and prenatal care should be thoroughly explored.

Fertility assessment and treatment in adolescent and young adult cancer survivors.

In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status, and may under- or overestimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Posttreatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.

Rural-urban differences in distress, quality of life, and social support among Canadian young adult cancer survivors: A Young Adults with Cancer in Their Prime (YACPRIME) study.

Geographic location plays a significant role in the health and wellbeing of those with cancer. This project explored the impact of rurality and social support on distress and quality of life in young adults (YAs) with cancer in Canada. The current research analyzed data from the Young Adults with Cancer in Their Prime (YACPRIME) study. Participants completed measures of emotional distress (10-item Kessler Psychological Distress Scale), quality of life (12-item Short-form Health Survey), and social support (Medical Outcomes Study-Social Support Survey). Rural and urban-dwelling survivors were compared using MANOVAs. Bivariate analyses were conducted to explore associations between distress and social support. Of the sample (N = 379), 26% identified their location as rural. Rural YA cancer survivors reported higher distress and worse physical health-related quality of life (HRQOL) than survivors from urban areas but similar levels of mental-health-related quality of life. Social support appeared to have a marginally greater effect on psychosocial outcomes for urban participants. All types of social support were associated with lower levels of distress. However, different types of social support were associated more strongly with distress depending on a participant's geography. Rural-dwelling YA cancer survivors experience significantly more distress and poorer physical HRQOL than urban-dwelling survivors. Different needs and preferences for social support may influence the psychological health of rural cancer survivors. Additional research is needed to determine how best to understand and address distress in rural YAs with cancer.

Poor Mental Health Among Survivors of Childhood Cancer—Risk Factors and a Call for Intervention

Lifetime Burden of Psychological Symptoms, Disorders, and Suicide Due to Cancer in Children, Adolescents, and Young Adults

O-115 Fertility preservation or egg donation for hereditary cancer syndromes?

Abstract Individuals with hereditary cancer syndromes are at risk of developing multiple tumours and, therefore, undergo life-long surveillance procedures and risk-reducing and/or therapeutic surgeries. Knowledge and testing for hereditary cancer susceptibility genes is rapidly spreading, often performed at the first cancer diagnosis. Different physical, psychosocial, ethical and economic considerations need to be taken into account when deciding on reproductive options in individuals with a hereditary cancer syndrome. The psychosocial impact of genetic predisposition to cancer may be particularly problematic and still represents an ongoing challenge for the professional taking care of these patients. In fact, worries about passing on a genetic risk for cancer to offspring are concerns expressed by the 65% of female young adult cancer survivors when specifically interviewed. At cancer diagnosis, fertility preservation procedures represent an effort to retain the opportunity to have genetically related children. Unfortunately, oocytes, embryo or ovarian cortex cryopreservation do not guarantee live birth. The success rates of these procedures are highly dependent on age, number of oocytes cryopreserved and may be influenced by other medical, lifestyle and (future) male factors. In addition, carriers of pathogenetic gene variants for cancer predisposition should also be thoroughly counselled about preimplantation genetic testing (PGT), a technique allowing the interruption of passing on the gene associated to cancer risk. However, this option inevitably lowers the efficacy of fertility preservation interventions in terms of future pregnancies. Egg donation is a spreading procedure with higher success rates than fertility preservation techniques. This approach allows individuals to avoid undergoing oocytes retrieval or ovarian tissue cryopreservation surgery, thus avoiding procedural risks (infection, haemorrhage, ovarian hyperstimulation syndrome) and postponement of oncological treatments. On the other side, offspring will not have a genetic link with recipient and the beneficial psychological role of fertility preservation would be missing. In fact, several recent studies have underlined the message of hope that is indirectly perceived by oncological patients when counselled for fertility preservation. Moreover, counselling on the possibility of egg donation is challenging at the time of cancer diagnosis. Making the right reproductive choice in carriers of hereditary cancer syndromes is a dilemma which can’t be solved generalizing. Even patients’ attitude could be different according to the time of counselling, whether is at cancer diagnosis or at the genetic predisposition diagnosis in healthy carriers. Egg donation should be considered in the available armamentarium. The complexity of the topic needs a personalized and multidisciplinary counselling.

Parental Cancer History and Its Association With Minor Children’s Unmet Food, Housing, and Transportation Economic Needs

A cancer diagnosis is associated with substantial economic burden for patients and their families. Young adult cancer survivors with dependent children may be particularly vulnerable to financial hardship. To examine associations of parental cancer with their children's unmet economic needs. This cross-sectional study used data from the nationally representative 2013 to 2018 US National Health Interview Survey. Children aged 5 to 17 years living in families with and without parental cancer history were queried about recent 1-year experiences. Statistical analyses were conducted from January 2022 to April 2023. Parental cancer history. The main outcomes were children's unmet economic needs, including family-level food insecurity, parent's financial worry about paying for monthly bills and housing costs, and delayed child medical care owing to lack of transportation. Multivariable logistic regressions adjusted for (1) child's characteristics (ie, age group, sex, and race and ethnicity), (2) parent's characteristics (ie, age group, sex, health insurance coverage, comorbid conditions, and obesity status), and (3) family's characteristics (ie, family structure [married or cohabiting parents vs single parent families], highest educational attainment in the family, and family income). Additional analyses focused on children with a parental cancer history to identify potentially modifiable characteristics associated with unmet economic needs. In this cross-sectional study of 22 941 children with (812 children; weighted number, 860 488 children) and without (22 129 children; weighted number, 24 545 463 children) a parental cancer history, the majority of children were aged 5 to 11 years (12 022 children [52.4%]), male (11 920 children [52.0%]), and non-Hispanic White (11 863 children [51.7%]). In adjusted analyses, parental cancer history was associated with more severe family-level food insecurity, including worrying about food running out (odds ratio [OR], 1.97; 95% CI, 1.56-2.49; P < .001), food not lasting (OR, 2.01; 95% CI, 1.56-2.58; P < .001), and inability to afford balanced meals (OR, 1.38; 95% CI, 1.06-1.79; P = .02). Moreover, parental cancer history was associated with parent's worry about paying monthly bills (OR, 1.41; 95% CI, 1.15-1.74; P = .001) and housing-related costs (OR, 1.31; 95% CI, 1.07-1.60; P = .009) and delays in child medical care because of lack of transportation (OR, 2.31; 95% CI, 1.49-3.59; P < .001). Among children with parental cancer history, female children, non-Hispanic Black children, children whose parents had multiple comorbidities, and children living in low-income families were especially vulnerable to unmet economic needs. Parental cancer is associated with greater likelihood of food insecurity, unaffordability of housing and other necessities, and transportation barriers to medical care for minor children. Strategies to identify such children and address their needs are warranted.