Talking with adolescent and young adult cancer survivors about health after cancer: A review and communication guide for clinicians
Adolescent and young adult (AYA) cancer survivors represent a vulnerable population in cancer care and survivorship. AYA survivors are a heterogeneous group that includes people between the ages of 15 and 39 years who were treated for cancer during their childhood or AYA years, at which time they had variable agency and may have received cancer care in pediatric or adult settings. AYA survivors experience one or multiple health care transitions, moving from active oncology to posttreatment survivorship and/or from pediatric to adult care. Clinician communication that centers the needs and preferences of the AYA and their family (parent, partner, other support person) is a therapeutic tool that can support AYAs in these health care transitions and promote AYA engagement in their care. In this article, the authors review clinician communication practices through the lens of AYAs' and families' lived experiences with a focus on the initial diagnosis and treatment phase, completion of treatment, and throughout posttreatment survivorship care. Specific communication topics relevant to survivorship encompass managing uncertainty and fear of cancer recurrence, discussing treatment‐related future health risks, and supporting self‐management and engagement in care. Best practices for clinician communication include maintaining openness, compassion, and flexibility to re‐assess and adapt communication styles as an AYA cancer survivors' needs, concerns, and preferences change over time.
- Research Article
1
- 10.1007/s11764-025-01812-6
- Apr 22, 2025
- Journal of cancer survivorship : research and practice
Fear of cancer recurrence (FCR) is common and burdensome in adolescent and young adult (AYA) cancer survivors. This systematic review examines FCR assessment, prevalence, severity, progression, related factors, consequences, and interventions in AYA cancer survivors. Electronic databases including PubMed, CINAHL, PsycINFO, Cochrane, and Embase were searched from their inception to October 2024. Two reviewers identified eligible peer-reviewed empirical studies, including both qualitative and quantitative ones on FCR in AYA survivors. The risk of bias was assessed using the Mixed-Methods Appraisal Tool. Quantitative studies were synthesized narratively, while qualitative studies underwent thematic synthesis. Among the 5340 studies identified, 34 studies were included finally. 21.4 to 93.3% of AYA cancer survivors experienced FCR. About one-third of survivors with moderate or high FCR improved over time. Female survivors, those with advanced cancer stages, and individuals with negative illness perceptions or higher anxiety reported higher FCR. Persistent FCR was associated with increased psychological problems and lower quality of life. Two studies on behavioral interventions, particularly internet-based cognitive-behavioral therapy (CBT), were acceptable but had limited evidence of efficacy. FCR is prevalent among AYA cancer survivors, particularly in female survivors, those with advanced cancer stages, and those with negative perceptions or higher anxiety. A significant proportion experience persistent, but variability in current evidence limits a comprehensive understanding of its severity, progression, and intervention efficacy. To enhance FCR management, the use of validated assessment tools is essential in both research and clinical contexts. Addressing the physical and psychological aspects of survivorship through comprehensive care is crucial for alleviating FCR and improving overall well-being. Identifying the key factors of FCR will stimulate the research and the development of targeted interventions for AYA cancer survivors.
- Research Article
- 10.1200/jco.2022.40.16_suppl.e24059
- Jun 1, 2022
- Journal of Clinical Oncology
e24059 Background: There is a paucity of information on health outcomes of adolescent and young adult (AYA) cancer survivors outside of Northern Europe or North America. We compared long-term health outcomes of Israeli AYA cancer survivors to non-cancer individuals with similar demographics and access to healthcare, estimated the risk of developing chronic health conditions by cancer type, and compared the comorbidity burden in Israeli AYA survivors to AYA cancer survivors from the U.S. Methods: This was a retrospective cohort of 2-year cancer survivors diagnosed with invasive cancer between 15 to 39 years of age from 2000 to 2018 in Clalit Health Services (CHS), the largest payer-provider healthcare organization in Israel. Non-cancer CHS participants were matched 4:1 to cancer survivors on age, sex, ethnicity, and membership duration. Health conditions were limited to those requiring medical intervention. Incidence rates for health conditions were determined for the two cohorts, and Poisson regression was used to determine the incidence rate ratio (IRR) with associated 95% confidence intervals (CI). A sub-population of CHS AYA survivors was used to compare the incidence of chronic health conditions from the Israeli cohort to AYA cancer survivors from Kaiser Permanente Southern California (KPSC), using Standardized Incidence Rate (SIR). Results: There were 12,674 CHS AYA cancer survivors and 50,696 non-cancer participants. Among survivors, the mean age at diagnosis was 31.02 years (SD: 6.2), 61.7% were female, and 78.4% were Jewish. The most common cancer diagnoses were lymphoma (16.5%), breast (16.4%), and thyroid (14.0%). Cancer survivors were significantly more likely to have any (IRR 1.60 95%CI: 1.54-1.67) or multiple (IRR 1.82 95%CI: 1.72-1.94) chronic health conditions compared to non-cancer participants. Survivors had an increased risk across nearly all examined outcomes, with an especially higher risk for premature ovarian failure (IRR 6.02 95%CI: 2.14-16.91), osteoporosis (IRR 4.74 95%CI: 4.06-5.53), and cardiomyopathy (IRR 4.20 95%CI: 3.35-5.27). We also found clear differences in the risk of specific health conditions by cancer type. Compared to the KPSC cohort, CHS cancer survivors had an overall lower (SIR 0.82 95%CI: 0.79-0.84) incidence of developing any health condition, with noticeably lower incidences of hypertension, hyperlipidemia, chronic liver disease, but higher incidences of cardiopulmonary diseases and osteoporosis. Conclusions: AYA cancer survivors in Israel are at increased risk for developing chronic conditions, compared matched non-cancer individuals, but the overall incidence of was lower when compared to survivors living in the U.S. These findings may allow for refinement of surveillance recommendations for AYA survivors, taking into consideration regional differences in socio-demographics and cancer care.
- Research Article
- 10.1200/op.2025.21.10_suppl.221
- Oct 1, 2025
- JCO Oncology Practice
221 Background: Adolescent and young adult (AYA) cancer survivors often face social risks—such as food insecurity, housing instability, and transportation barriers—that may impact healthcare use. This study examines the prevalence of social risks in a large integrated healthcare system and their association with healthcare use patterns among AYA cancer survivors. Methods: We conducted a cross-sectional study of 330 AYA cancer survivors (ages 15–39) within Kaiser Permanente Northwest who completed a social risk screening survey from 2017 to 2022. Patients were grouped by presence or absence of any social risk (1-4 social risks vs. 0 social risks). Healthcare use following completion of the social risk survey included primary care, obstetrics/gynecology (ob/gyn), urgent care, emergency department (ED), and inpatient admissions. Multivariable logistic regression estimated the association between healthcare use and the presence of any social risk, adjusting for pre-screening visit history, age at diagnosis, sex, insurance, time since diagnosis, and cancer type. Results: Nineteen percent (N = 63) of AYA survivors had ≥1 social risk, including financial hardship (73%), food insecurity (44%), housing instability (42%), and transportation difficulties (14%). Those with any social risk had a higher percentage of non-commercial insurance (42% vs. 14%, p < 0.0001); and, on average, lived in areas that were more socioeconomically disadvantaged (0.13 vs. -0.21, p = 0.004), had lower household income ($69,765 vs. $78,363, p = 0.012), and had lower educational attainment (0.34 vs 0.30, p = 0.021), compared to those with no social risks. AYA survivors with any social risks had significantly higher use of urgent care (48% vs. 34%, p = 0.030) and ED (59% vs. 42%, p = 0.015), but significantly lower use of ob/gyn (31% vs. 50%, p = 0.019). In adjusted models, AYA survivors with social risks had higher odds of ED visits (OR: 2.33, 95% CI: 1.19–4.58) and lower odds of ob/gyn visits among females (OR: 0.27, 95% CI: 0.11–0.64). Conclusions: About 1 in 5 AYA cancer survivors experienced at least one social risk, which was associated with increased use of acute care and reduced preventive or routine ob/gyn visits. These findings highlight the importance of integrated social care strategies to support quality healthcare among AYAs. Addressing social needs may reduce reliance on emergency services and improve care continuity.
- Research Article
3
- 10.1089/jayao.2020.0215
- May 6, 2021
- Journal of adolescent and young adult oncology
Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15-32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed.
- News Article
1
- 10.1002/cncr.32952
- May 12, 2020
- Cancer
New research published in Cancer Epidemiology, Biomarkers & Prevention indicates that adolescent and young adult (AYA) cancer survivors have almost double the risk of hospitalization in comparison with their siblings and unrelated, age-matched people without cancer.1 According to Chelsea Anderson, PhD, MPH, a postdoctoral fellow at the American Cancer Society, few studies have investigated the health risk in the AYA population after cancer treatment. Moreover, researchers say, previous studies in this population have not well characterized hospitalization patterns in cancer types that commonly affect patients at the older end of that age group, including breast cancer, colorectal cancer, and other types of cancers. Using the Utah Population Database, Dr. Anderson and colleagues from the University of Utah and the University of North Carolina assessed the risk of first hospitalization and the total hospitalization rate. Their analysis included data from 6330 cancer survivors, 12,924 siblings, and 18,171 age-matched people without cancer. Their findings showed that the risk of a first hospitalization in AYA survivors was 1.78 times higher than the risk in their siblings and 1.93 times higher than the risk in unrelated, age-matched people without cancer. The rate of total hospitalizations increased by 56% for AYA survivors compared with age-matched people without cancer. AYA survivors of melanoma and cervical/uterine cancers had the lowest risk of a first hospitalization. The results also showed that the AYA cancer survivors had more than double the risk for other conditions, including infectious and parasitic diseases, nervous system diseases, circulatory diseases, skin diseases, respiratory conditions, injuries, and poisoning. Furthermore, they had a somewhat elevated risk for digestive, mental, musculoskeletal, and genitourinary diseases. The study's findings illustrate the importance of long-term, risk-based follow-up in this age group to prevent and treat severe late effects and other health problems and may help to guide future guidelines for follow-up care in AYA cancer survivors, Dr. Anderson notes.
- Research Article
1
- 10.1200/jco.2022.40.28_suppl.229
- Oct 1, 2022
- Journal of Clinical Oncology
229 Background: Adolescent and Young Adult (AYA) cancer survivors experience psychological sequelae, yet causal pathways between AYA cancer, mood disorders, and mental healthcare remain unclear. The 2019 National Health Interview Survey (NHIS) applies the Patient Health Questionnaire-8 item (PHQ8) and Generalized Anxiety Disorder-7 item (GAD7), providing validated evaluation of mental health (MH) in a national sample. We investigated how AYA cancer history affects MH symptoms and MH care utilization. Methods: Descriptive statistics evaluated depression (PHQ8), anxiety (GAD7), use of MH medications, and receipt of psychotherapy in three groups: adults with AYA cancer history, adults with Older Adult (OA) cancer history, and cancer-free adults. Structural Equation Modeling (SEM) was used to estimate cancer survivorship impact on medication use and receipt of therapy (total effects), as well as direct/indirect effects through depression and anxiety (mediated effects). Results: AYA cancer survivors had higher mean PHQ8 (3.64, 2.80, 2.43, p < 0.001) and GAD7 (3.05, 1.90, 2.05, p < 0.001) compared to OA survivors and cancer-free adults. They reported more medication use for MH (24.8%, 21.0%, 15.2%, p < 0.001), and received therapy more often (14.0%, 8.6%, 9.5%, p = 0.001). Total effects models showed AYA survivors were more likely to have received therapy (OR 1.55, 95% CI 1.20-2.00) and to have taken medications (OR 1.84, 95% CI 1.49-2.28) compared to cancer-free adults. Mediated models examined indirect (mediated by MH symptoms) and direct (residual) pathways. All indirect partial paths (regressor to mediator or mediator to outcome) showed large, significant effects (p < 0.001), except for regression of GAD7 on OA survivors. Direct paths showed large, significant effects of AYA and OA survivorship on medication use, but small nonsignificant effects on therapy. Indirect full paths (regressor to outcome through mediators) demonstrated smaller effects than direct pathways, but overall larger effects for AYA survivors than OA survivors. Conclusions: AYA survivors experience worse MH symptoms and are more likely to utilize MH care than OA survivors and cancer-free adults. Effects of cancer survivorship on MH care utilization were mediated through MH symptom severity. Mediated effects were larger for AYA survivors than OA survivors.[Table: see text]
- Research Article
- 10.1200/jco.2020.38.15_suppl.e19116
- May 20, 2020
- Journal of Clinical Oncology
e19116 Background: Mental distress is associated with poor treatment adherence and adverse psychosocial outcomes, and cancer survivors, especially adolescent and young adults (AYA), may experience greater distress than older adults and the general population. We tested this hypothesis by examining the association between AYA vs. adult cancer survivors vs. the general population without a history of cancer, and mental distress. Methods: Using the 2014-2017 National Health Interview Surveys, 2,516 AYA cancer survivors (aged 15 – 39 years) were identified. We then used propensity score matching (matched on sociodemographics, comorbidities, smoking status and visit to mental health professional in past year) to create 2,516 older cancer survivors (aged ≥ 40 years); and 2,516 adults without cancer (general population) as the comparison groups. Mental distress (outcome of interest) was measured using the validated Kessler nonspecific mental/psychological distress (K6) scale. The 6-item K6 scale examines how frequently within the past 30 days an individual felt nervous, hopeless, restless or fidgety, worthless, sad, and that everything was an effort. Responses were summed to yield a score ranging between 0 and 24 and classified as none/low (0≤K6 < 5), moderate (5≤K6 < 13), and severe (K6≥13) mental distress. Two separate weighted multinomial logistic regression models estimated the odds of mental distress in study population (AYA vs. adult cancer survivors; and AYA vs. general population), adjusting for known covariates. Results: Mental distress was more prevalent among AYAs than adult cancer survivors (moderate: 24.0% vs 18.3%; and severe: 5.7% vs 4.2% [ P= .0002]); and the general population (moderate: 24.3% vs 16.7%; and severe: 6.1% vs 5.3% [ P< .0001]). Similarly, prevalence was higher among adult cancer survivors than the general population (moderate: 16.8% vs 13.6%; and severe: 3.2% vs 2.7% [ P= .0002]). In the multivariable multinomial analyses, AYAs had greater odds of mental distress (aORmoderate = 1.44; 95% CI 1.09, 1.89; and aORsevere = 1.77; 95% CI 1.21, 2.58) vs. adult cancer survivors. AYAs also had greater odds of mental distress vs. the general population (aORmoderate = 1.39; 95% CI 1.08, 1.79), but no significant difference in severe distress. Conclusions: About 1-in-4 AYA cancer survivors report some mental distress, and distress is more prevalent among this younger age group than older adults with cancer and the general population. Psychosocial care may be especially needed in this younger population to mitigate adverse psychosocial outcomes.
- Research Article
- 10.1093/annonc/mdx585
- Oct 1, 2017
- Annals of Oncology
SY18-6 - Work-related difficulties among adolescent and young adult cancer survivors
- Research Article
44
- 10.1002/cncr.33003
- Jun 2, 2020
- Cancer
Although there are a growing number of survivors of adolescent and young adult (AYA) cancer, to the authors' knowledge the long-term overall survival (OS) patterns for AYA cancer survivors are underreported. The objective of the current study was to assess the long-term survival of AYA cancer survivors and identify factors associated with diminished long-term survival. The authors used The University of Texas MD Anderson Cancer Center's tumor registry to identify 5-year survivors of cancer diagnosed as AYAs (ages 15-39years) between the years 1970 and 2005, and who were alive 5years after diagnosis. Kaplan-Meier curves were used to estimate OS rates over time, and Cox proportional hazards models were fitted to evaluate the association of covariates with OS. The authors identified 16,728 individuals who were 5-year survivors of cancer and were diagnosed as AYAs with a median follow-up of 20.0years. The 10-year, 20-year, and 25-year OS rates were 86% (95% confidence interval [95% CI], 85%-86%), 74% (95% CI, 73%-75%), and 68% (95% CI, 67%-68%), respectively, all of which were lower than the age-adjusted estimated survival rates of the general population. Long-term OS improved for AYAs diagnosed between 2000 and 2005 compared with those diagnosed in the prior decades (P<.001). Older age at the time of diagnosis, receipt of radiation, and diagnoses including central nervous system tumors and breast cancer each were associated with diminished long-term survival. AYA cancer survivors have inferior long-term survival compared with the general population. Studies investigating the prevalence and types of late treatment effects and causes of death among AYA survivors are needed to more accurately identify AYAs who are at highest risk of early or late mortality.
- Research Article
3
- 10.1089/jayao.2021.0207
- Jun 28, 2022
- Journal of Adolescent and Young Adult Oncology
Purpose: Engagement of patients in their care can lead to better health outcomes, especially for adolescent and young adult (AYA) cancer survivors who experience mental and physical illnesses more often than noncancer adults. We examined how patient engagement in care influences health care expenses and use. Methods: AYA cancer survivors (n = 1162) and a comparison group of matched adults with no history of cancer (n = 2954) were identified from the 2011 to 2016 Medical Expenditure Panel Survey (MEPS) data. Medical expenditures and health care utilization associated with shared decision-making (SDM) measured by a self-administered questionnaire adapted from the Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CAHPS-CG) survey were evaluated using multivariable regression models. Results: AYA cancer survivors were more likely to report poor SDM compared with adults with no history of cancer (odds ratio = 1.31, 95% confidence interval [CI]): 1.06 to 1.62). AYA cancer survivors with poor SDM were more likely to report poor mental and physical health compared with AYAs with good SDM. AYA cancer survivors with poor SDM had $3037 (CI: $110 to $7032) in additional annual medical expenses and 4.86 (CI: 2.00 to 8.52) in additional office visits compared with AYA cancer survivors with optimal SDM, even after adjusting for chronic conditions and psychological distress. Conclusion: Our results highlight the substantial economic burden associated with poor SDM in AYA cancer survivors. Our research suggests that interventions to improve SDM in AYA cancer survivors may contribute to patients' positive perception of their health and result in AYAs seeking fewer medical services resulting in lower medical expenses.
- Research Article
2
- 10.1089/jayao.2024.0053
- Aug 1, 2024
- Journal of adolescent and young adult oncology
Purpose: Few studies have specifically targeted symptom management interventions for adolescent and young adult (AYA) cancer survivors. A greater understanding of AYA cancer survivors' experiences with cancer treatment-related symptoms would help develop age-appropriate oncology symptom management interventions. The purpose of this qualitative analysis was to explore AYA cancer survivors' experience with cancer treatment-related symptoms. Methods: Nineteen post-treatment AYA cancer survivors (18-39 years old) who self-reported moderate-severe cancer treatment-related symptom severity participated in video conferencing or telephone interviews. The questions in the interview guide queried participants to share their experience with cancer treatment-related symptoms. Inductive content analysis was used to identify themes from the interviews. Results: The themes that emerged from the interviews included (1) cancer treatment-related symptoms negatively affected AYA cancer survivors' quality of life (e.g., symptoms served as a reminder of cancer recurrence possibility); (2) AYA cancer survivors' attitudes and feelings about communicating cancer treatment-related symptom concerns to clinicians (e.g., patient-clinician communication was bolstered when AYAs perceived that symptoms were being taken seriously); (3) AYA cancer survivors are interested in oncology symptom management clinical trials, but logistical challenges are barriers to participation; and (4) AYA cancer survivors are interested in nonpharmacological treatments for symptom management. Conclusion: Results highlight the burden of cancer treatment-related symptoms on day-to-day life among post-treatment AYA cancer survivors. Future work is needed to identify nonpharmacological symptom management interventions, strategies to improve patient-clinician communication about symptoms, and strategies to increase the visibility and accessibility of symptom management clinical trials for AYA cancer survivors.
- Research Article
- 10.1200/jco.2025.43.16_suppl.11104
- Jun 1, 2025
- Journal of Clinical Oncology
11104 Background: Research addressing the supportive care needs of diverse adolescent and young adult (AYA) cancer survivors remains underdeveloped relative to younger and older cancer survivor populations. Given their distinct developmental, psychosocial, and healthcare challenges, it is critical to characterize the unmet supportive care needs (USCN) specific to AYAs. This study aimed to compare self-reported USCN between AYA and older (>39 years old) cancer survivors to identify age-specific gaps in care and opportunities to improve outcomes. Methods: Between October 2019 and October 2024, 20,520 cancer survivors (n=1,287 AYA and n=19,233 non-AYA) at Sylvester Comprehensive Cancer Center completed the My Wellness Check (MWC) questionnaire. MWC is fully integrated and scored in real-time in the electronic health record, and evaluates 16 domains of supportive care needs (e.g., stress management, financial concerns, informational resources, transportation) alongside patient-reported outcomes (PROs; PROMIS measures of pain interference, fatigue, physical function, anxiety, and depression) and health-related quality of life (HRQOL; FACT-G7). Sociodemographic and clinical characteristics and the prevalence of USCNs were compared between AYA and other cancer survivors using chi-square and t-tests. Results: The AYA group had a higher proportion of females (64% vs. 51%), non-White (20% vs. 14%), Hispanic (56% vs. 44%), uninsured (4% vs. 3%), and unpartnered individuals (59% vs. 34%) compared to non-AYAs (all p s < 0.01). Across both groups, the most frequently reported USCNs were general cancer education (11%), coping with a cancer diagnosis (11%), and financial concerns (9%). AYAs were more likely to report at least one USCN compared to non-AYA survivors (33% vs. 28%). AYAs were also more likely to endorse needs related to coping with a cancer diagnosis (14% vs. 11%), financial concerns (12% vs. 9%), work-related issues (6% vs. 3%), oncofertility (10% vs. 1%), and childcare (3% vs. 0.5%) (all p s < 0.001). No significant differences were observed for other USCN, including transportation, housing, family problems, sexual health, spiritual concerns, access to medicines, and advance directives. Conclusions: While both AYA and non-AYA cancer survivors face substantial unmet supportive care needs, AYAs exhibit additional challenges, particularly in areas such as financial concerns, work-related issues, fertility preservation, and childcare. These findings align with prior research while uniquely emphasizing the unmet needs of a more ethnically diverse population. This study underscores the urgent need for targeted assessments and interventions to address the unique supportive care needs of AYA cancer survivors, ensuring equitable and age-appropriate survivorship care.
- Research Article
4
- 10.1158/1055-9965.epi-22-0826
- Apr 18, 2023
- Cancer Epidemiology, Biomarkers & Prevention
Subsequent malignant neoplasms (SMN; new cancers that arise after an original diagnosis) contribute to premature mortality among adolescent and young adult (AYA) cancer survivors. Because of the high population prevalence of human papillomavirus (HPV) infection, we identify demographic and clinical risk factors for HPV-associated SMNs (HPV-SMN) among AYA cancer survivors in the SEER-9 registries diagnosed from 1976 to 2015. Outcomes included any HPV-SMN, oropharyngeal-SMN, and cervical-SMN. Follow-up started 2 months after their original diagnosis. Standardized incidence ratios (SIR) compared risk between AYA survivors and general population. Age-period-cohort (APC) models examined trends over time. Fine and Gray's models identified therapy effects controlling for cancer and demographic confounders. Of 374,408 survivors, 1,369 had an HPV-SMN, occurring on average 5 years after first cancer. Compared with the general population, AYA survivors had 70% increased risk for any HPV-SMN [95% confidence interval (CI), 1.61-1.79] and 117% for oropharyngeal-SMN (95% CI, 2.00-2.35); cervical-SMN risk was generally lower in survivors (SIR, 0.85; 95% CI, 0.76-0.95), but Hispanic AYA survivors had a 8.4 significant increase in cervical-SMN (SIR, 1.46; 95% CI, 1.01-2.06). AYAs first diagnosed with Kaposi sarcoma, leukemia, Hodgkin, and non-Hodgkin lymphoma had increased HPV-SMN risks compared with the general population. Oropharyngeal-SMN incidence declined over time in APC models. Chemotherapy and radiation were associated with any HPV-SMN among survivors with first HPV-related cancers, but not associated among survivors whose first cancers were not HPV-related. HPV-SMN in AYA survivors are driven by oropharyngeal cancers despite temporal declines in oropharyngeal-SMN. Hispanic survivors are at risk for cervical-SMN relative to the general population. Encouraging HPV vaccination and cervical and oral cancer screenings may reduce HPV-SMN burden among AYA survivors.
- Research Article
- 10.1158/1538-7445.am2022-1997
- Jun 15, 2022
- Cancer Research
Purpose: Data are lacking on the distribution, factors associated with, and long-term impact of diminished health-related quality of life (HRQoL) at diagnosis in adolescent and young adult (AYA) cancer survivors (≥2 years post cancer diagnosis). Our goal was to fill this gap in knowledge. Methods: A cohort of AYA (15y - 39y) cancer patients treated at MD Anderson between 2000-2016 who had survived at least 2 y was identified from our Institutional Tumor Registry. HRQoL was assessed at diagnosis with the SF12v1 questionnaire. Demographic and behavioral risk factors, tumor type, and vital status were ascertained. Physical composite summary (PCS) and mental composite summary (MCS) scores were generated from SF12 responses following mean-based normalization; PCS or MCS &lt; 50 indicated “poor” HRQoL. Statistical tests included ANOVA, quantile regression, and multivariable Cox proportional hazards. Results: 2,609 AYA cancer survivors (75% diagnosed between age of 26-39 y; 67% White, 18% Hispanic and 9% Black) were included. Breast cancer was the most frequent diagnosis (25%), followed by sarcoma (12%) and Hodgkin lymphoma (10%). Median follow-up for participants was 10.5 y. Overall mean PCS and MCS scores at diagnosis were 45.3 (SD: 11.4) and 47.0 (SD: 10.5), respectively. Female AYA cancer patients had significantly higher PCS, yet lower MCS compared to their male counterparts (both P&lt;0.001). A positive association between age at diagnosis and PCS was observed (P&lt;0.001), in contrast to the inverse association with MCS (P&lt;0.001). Differences in PCS (P&lt;0.001) and MCS (P=0.001) were also evident by tumor type. For example, women with breast cancer reported the most favorable PCS (51.5) at diagnosis, yet among the lowest MCS (46.1) of the nine tumor types analyzed. The Black AYA population had a larger burden of poor PCS at diagnosis with 61% of patients reporting scores &lt;50 compared to 55% of Hispanic and 51% of non-Hispanic whites. Significant predictors of diminished PCS in AYA cancer survivors in the bottom 25% of PCS scores were younger age at diagnosis (P=0.003), male gender (P&lt;0.001), diagnosis of a hematologic malignancy versus solid tumor (P&lt;0.001), smoking (P=0.003) and not consuming any alcohol currently (P&lt;0.001). Overall, low PCS (&lt;50) at diagnosis (HR=1.57, P&lt;0.001), and diagnosis of a solid tumor compared to a hematologic malignancy (HR=2.33, P&lt;0.001) were associated with lower survival. Conclusions: In this large, diverse AYA cancer survivor cohort, physical and mental HRQoL at diagnosis were impacted by AYA’s age at diagnosis, gender, tumor type, and smoking status. Low PCS at diagnosis was an independent predictor of diminished survival among AYA cancer survivors ≥2y post diagnosis. Our findings suggest that patient-reported poor physical well-being at diagnosis is a biomarker of poor prognosis for AYA cancers. Further studies are needed to identify interventions to improve outcomes for this population. Citation Format: Goldy C. George, Clark R. Andersen, Xiaohui Tang, John A. Livingston, Michael E. Roth, Michelle A. Hildebrandt. Health-related quality of life at diagnosis in survivors of adolescent and young adult cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2022; 2022 Apr 8-13. Philadelphia (PA): AACR; Cancer Res 2022;82(12_Suppl):Abstract nr 1997.
- Abstract
1
- 10.1016/j.annonc.2022.07.1661
- Sep 1, 2022
- Annals of Oncology
1567P Comparison of sociodemographic characteristics and physical and psychological health of adolescent and young adult (AYA) cancer survivors with those of the general population
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