Joel Milam

Inconsistent reporting of age at cancer diagnosis limits the utility of non-interventional studies focused on adolescents and young adults (AYAs), defined by the National Cancer Institute as individuals diagnosed between ages 15 and 39. Standardised reporting is essential to synthesise evidence and develop targeted interventions to address this population’s unique needs. While initiatives have emphasised reporting age at study enrolment in reporting results, there is a lack of guidance on specifying age at diagnosis—an essential detail for accurately identifying AYA status. To estimate the scope of this problem, we reviewed 734 non-interventional cancer studies published between 2018 and 2022 and found that 33% did not report age at diagnosis sufficiently to determine AYA inclusion, with no improvement over time. We recommend that future reporting guidelines explicitly require age-at-diagnosis metrics, including mean, median, range and count of participants diagnosed between ages 15 and 39, to improve data comparability of non-interventional AYA cancer research and accelerate targeted interventions. We further recommend that studies with mixed-age samples report outcomes stratified by AYA status wherever sample size permits.

Purpose: Both short (< 7 h) and long (> 9 h) sleep duration are associated with poor health. Yet, little is known about sleep duration patterns and correlates in young adult childhood cancer survivors (CCS). Methods: Data were from Project Forward, a population-based survey of young adult CCS in Los Angeles County. Average sleep duration, demographic and medical characteristics (e.g., treatment intensity), and mental (i.e., well-being, depressive symptoms) and physical (i.e., general health, comorbidities) health were measured via self-report. Chi-square and one-way ANOVAs assessed correlations between characteristics and short and long sleep duration (versus recommended; 7–9 h). Multivariable linear and negative binomial regressions examined relationships between sleep duration and mental and physical health. Results: Participants ( N = 1,062, Mean age = 26.2 years, 50% female, 51% Hispanic) were, on average, 14.5 years (range: 5–22) post-diagnosis. Overall, 30% reported short and 7% reported long sleep. Short sleep was associated with older age, being employed, and having children ( p s ≤ .001). Unemployment and lower educational attainment were associated with long sleep ( p s ≤ .001). Both short and long sleep were associated with lower well-being ( p s ≤ .001), greater depressive symptoms ( p s ≤ .001), poorer self-rated general health ( ps ≤ .012), and more comorbid conditions ( ps = .001), compared to recommended sleep duration. Associations with physical health remained largely significant controlling for depressive symptoms ( p s < .025). Conclusions: We found unique correlates of short and long sleep duration and associations with poorer mental and physical health among a large, diverse sample of young adult CCS. Implications for Cancer Survivors: As a modifiable behavior, sleep duration is a relevant intervention target for improving outcomes after cancer.

Background: Young adult childhood cancer survivors (YACCS) experience persistent challenges that could delay their transition to independent adulthood. This study examined disparities in life milestone achievement between YACCS and a matched population‐based control group and assessed the impact of clinical and demographic factors, including time since diagnosis, treatment intensity, and race/ethnicity.Methods: This matched case–control study utilized data from Project Forward and the California Health Interview Survey. YACCS were matched to general population controls at a 1:3 ratio based on age, sex, year of survey, and race/ethnicity. Multivariable logistic regression models were used to compare life milestone achievement between the groups and to examine associations between survivor characteristics and life milestone achievement, adjusting for neighborhood socioeconomic status.Results: The study included 1106 YACCS and 3292 matched controls. YACCS were less likely to attain a college degree (OR = 0.79, 95% CI: 0.66–0.95), be employed full‐time (OR = 0.39, 95% CI: 0.33–0.45), or be married/partnered (OR = 0.69, 95% CI: 0.58–0.82). Conversely, they were more likely to be unemployed (OR = 1.89, 95% CI: 1.61–2.23), work part‐time (OR = 1.67, 95% CI: 1.38–2.02), and live with a parent (OR = 3.34, 95% CI: 2.78–4.00). Long‐term survivors (15+ years) and those who received more intensive treatments continue to encounter difficulties, particularly with achieving independent living and securing stable employment.Conclusions: YACCS experience significant delays in achieving key life milestones compared to their peers, highlighting the lasting socioeconomic impact of childhood cancer. Intensive treatments further exacerbate these disparities. Targeted interventions and survivorship support programs are needed to address these challenges and improve long‐term outcomes.

Aims: To assess the burden of cardiometabolic factors and their associations with cardiovascular disease (CVD) among young adult (YA) cancer survivors (diagnosed between ages 19 and 39 years), while exploring ethnic disparities. Methods and results: We conducted a retrospective cohort study of 8943 YA cancer survivors diagnosed before 31 December 2021 with ≥2-year cancer survivorship using University of California, Irvine electronic medical records. Non-cancer participants were matched 1:1 based on sex and year of birth. The exposure status was defined by cardiometabolic factors including Type 2 diabetes (T2DM), hypertension, hyperlipidaemia, and obesity. Main outcomes were CVD outcomes encompassing stroke, myocardial infarction (MI), and congestive heart failure (CHF). Generalized linear mixed models with binary outcome were conducted to assess the associations of interest. The mean age at cancer diagnosis was 29.2 years (standard deviation: 5.90), with 57.39% female participants. Cardiometabolic factors were more prevalent in cancer survivors compared with non-cancer participants, with racial/ethnic disparities observed. Significant associations between cardiometabolic factors and CVD were identified after adjusting for potential confounders; cancer survivors with T2DM had higher odds of MI [odds ratio (OR): 6.99; 95% confidence interval (CI): 3.45–14.19] and CHF (OR: 12.304; 95% CI: 7.23–20.91). Hypertension was strongly associated with CHF (OR: 20.48; 95% CI: 11.79–35.57). Conclusion: Cardiometabolic factors independently contribute to elevated CVD risk in YA cancer survivors, beyond the effects of cancer treatment alone. These findings underscore the need for integrated cardiometabolic risk assessment and prevention strategies in survivorship care, including early screening, lifestyle interventions, and targeted management approaches. Lay summary: Why are young cancer survivors at higher risk of heart disease? Young adult cancer survivors (aged 19–39 years at diagnosis) may face a higher risk of developing cardiovascular diseases later in life, not only due to prior cancer treatment but also because of common, manageable health conditions such as diabetes and high blood pressure.Young adult cancer survivors had significantly higher rates of heart-related conditions, with those who had diabetes being nearly seven times more likely to experience a heart attack and over 12 times more likely to develop heart failure.These findings underscore the importance of follow-up care that includes early screening and management of cardiometabolic risk factors, not just cardiac monitoring to reduce long-term heart disease risk.

Introduction: Childhood cancer survivors (CCS) experience many long-term health problems that can be alleviated by receiving guideline-concordant survivorship care. However, many CCS encounter barriers to accessing care and do not receive recommended survivorship care. We reviewed the empirical evidence of barriers to and facilitators of survivorship care for CCS. Methods: As part of a larger project on CCS, this systematic review followed a detailed protocol (CRD42021227965) and searched PubMed, CINAHL, and PsycINFO for studies on survivorship care for CCS without date restriction, and abstracted reported barriers and facilitators. Searches identified 8585 citations and 2 independent reviewers screened 2934 publications at full text. We evaluated the risk of bias for individual studies and quality of evidence (QoE) across barriers and facilitators. Results: A total of 49 studies reported barriers and facilitators (survivors N = 33, clinicians N = 19, family members N = 8, and health system leaders N = 7) addressing knowledge (beliefs, autonomy, culture), prioritization (active avoidance, trust, communication), and infrastructure (health system resources, transitions). We found high QoE of barriers including lack of knowledge and inaccurate beliefs (survivorship care not needed or redundant), active avoidance and lack of trust (high level of emotional trauma and anxiety, lack of confidence in care team, no local providers with experience in survivorship care), and gaps in infrastructure (financial toxicity/hardship, lack of insurance coverage, difficulty scheduling appointments, and lack of stable housing). Conversely, knowledge (providing a survivorship care plan or treatment summary, supporting patient autonomy) and prioritization (close relationships with clinicians, enhanced care coordination, communication) can also facilitate survivorship care engagement, documented with high QoE. Conclusions: We found strong empirical evidence of barriers to and facilitators of survivorship care, including potentially modifiable factors surrounding knowledge, prioritization, and infrastructure survivorship care. Prospective, multilevel approaches are needed to improve the receipt of guideline-concordant survivorship care among CCS.

Purpose: This study aims to explore the integration of American Society of Clinical Oncology (ASCO) guidelines for fertility discussion in clinical practice. Methods: A concurrent triangulation mixed methods design was used. We recruited oncologists from an NCI-designated Comprehensive Cancer Center who treat adolescents and young adults (AYAs) at risk for infertility to participate in a semi-structured qualitative interview and conducted a thematic analysis. Simultaneously, self-report fertility-related data were collected from AYAs (age 18-39) diagnosed at the same institution via self-report survey and were analyzed using descriptive statistics. Results: Themes reported by oncologists (N = 12; 66.7% female, on average in practice for 14.3 years) included a lack of oncofertility-related training and limited knowledge surrounding fertility discussion guidelines. Those who were aware of guidelines stated that they informed their discussions. Oncologists’ perceptions of fertility discussion guidelines were largely positive, though reservations were expressed. Discussions were primarily informed by patient needs and research/literature, but seldom by oncologists’ explicit training or experience in oncofertility. Among AYAs (N = 58; 53.5% female, 35.1% Hispanic, on average 32.0 years at diagnosis), 82.3% had a fertility discussion, 62.6% of which occurred with their oncologist. Fertility discussions occurred at some visits (66.7%), and AYAs were very (39.4%) or moderately (27.3%) satisfied with counseling received. Components of ASCO guidelines most often discussed were the timing of preservation and consideration of individual factors in fertility preservation (66.7% each). Patient advocacy resources (33.3%) and informing them that their cancer history does not increase risk of cancer or birth defects in a child (30.3%) were least often discussed. Conclusion: Awareness of fertility discussion guidelines among oncologists was low, and more than half of AYAs reported only two components of ASCO guidelines were included in fertility discussions with their oncologists. Despite this, AYAs’ overall satisfaction with discussions was moderate to high, suggesting adherence to all guideline components may not be necessary for AYAs to derive benefit. While oncologists reported largely positive perceptions of fertility discussion guidelines, several shared that the guidelines themselves may hinder implementation if they do not capture diverse patient scenarios and/or are outdated. Implications for Cancer Survivors: Findings suggest a need to improve oncologists’ knowledge surrounding guidelines, refine recommendations to optimize oncofertility counseling, and subsequently improve their integration in practice to ensure AYAs are provided with desired and actionable information to support goal-concordant reproductive decisions.

Childhood cancer survivors (CCS) face elevated risks for long-term health complications, making continued follow-up care essential. Yet many remain disengaged from survivorship services. This randomized controlled pilot study tested a brief, phone-based narrative intervention aimed at increasing health care self-efficacy (HCSE), posttraumatic growth (PTG), and intent to seek care among adolescent and young adult CCS not currently in follow-up. Thirty-three participants were randomized to either the intervention or a control group. Intervention participants completed a single one-hour phone call in which they reflected on their cancer experience, identified strengths and growth, and considered how these could support re-engagement with care. All participants received a survivorship brochure; intervention participants also received a personalized summary. The intervention was feasible and well-received, with high participation and full survey completion. Compared to controls, intervention participants showed significant increases in HCSE and intent to seek follow-up care (p < .05). PTG increased in both groups with no between-group differences. No differences were observed in appointment-making behavior at four weeks. A single narrative-based session may be sufficient to boost motivation and self-efficacy, but additional strategies may be needed to translate these gains into action. This low-cost, scalable approach merits further exploration in larger, more diverse samples.

Late-onset conditions have been reported in young adult Hodgkin lymphoma (YAHL) survivors but the use of convenience controls may bias estimates. Thirty-five YAHL survivors and their unaffected co-twins completed an online questionnaire on such conditions. McNemar's test and conditional logistic and random-effects linear regression were used to assess differences. On average, YAHL survivors (54.3% monozygotic, 57.1% female) were 27.1 years at diagnosis and 29.7 years post-diagnosis at participation. Survivors had increased risk of secondary malignancy (OR = 4.33), cardiac (12 cases/0 co-twins), lung (6 cases/0 co-twins), and thyroid conditions (18 cases/0 co-twins), and increased utilization of cardiac (OR = 9.00) and thyroid tests (OR = 10.00) compared to their co-twin. Non-significant trends in life milestone achievement, including greater college degree attainment, earlier retirement, and fewer biological children, were also observed in YAHL survivors. Life satisfaction was significantly lower among YAHL survivors (p = .035). Decades after diagnosis, differences in late outcomes were observed in YAHL survivors compared to co-twin controls, providing a more accurate assessment of the late effects of YAHL.

Purpose: To qualitatively explore the content of fertility discussions between oncologists and their adolescent and young adult (AYA; 15–39 years) cancer patients from the perspective of oncologists at an NCI-designated comprehensive cancer center. Methods: We recruited oncologists of various specialties employed at an NCI-designated comprehensive cancer center in California who treat AYAs at risk for infertility. We collected demographics and fertility-related information (if they discuss fertility with AYA patients and level of confidence doing so) via REDCap prior to conducting a semi-structured interview via HIPAA-compliant Zoom. Audio files were transcribed verbatim and reviewed for themes using an inductive codebook thematic analysis approach. Results: Oncologists (n = 12) were female (66.7%), of White or Asian race (41.7% each), and were on average in practice for 14.3 years (SD = 6.7). All endorsed discussing fertility with AYAs and were on average somewhat/fairly confident doing so. The detail with which oncologists reported discussing fertility with AYAs varied substantially and only some reported discussing costs associated with fertility preservation. Oncologists also reported assorted information they always mention, mention on a case-by-case basis, avoid, or feel is not necessary when discussing fertility. Conclusion: This study provides a detailed description of information delivered by oncologists during fertility discussions to their AYA patients, revealing unstandardized oncofertility counseling. Fertility discussions were described to vary widely in depth and content, suggesting adherence to clinical practice guidelines limited. Interventions to increase provision of guideline-concordant counseling are needed to provide actionable pathways by which AYAs can proactively mitigate adverse reproductive health outcomes.

Lifelong, guideline‐based monitoring for late effects is recommended for childhood cancer survivors (CCS). We examined rates of receiving surveillance tests among at‐risk young adult CCS in a population‐based study ( n = 253; 50% Hispanic/Latino; mean post‐treatment interval 14.5 years, range: 5–22). Adherence rates were 36.1%, 31.9%, and 36.4% among those indicated for cardiac ( n = 119), thyroid ( n = 68), and breast ( n = 66) surveillance, respectively, indicating that poor surveillance among long‐term CCS is widespread. Receipt of any of these surveillance tests was positively associated with being in follow‐up care, having any health insurance (vs. none), and receiving education about need for follow‐up with surveillance (all p ‐values less than .05).