Psychological distress and mental health care utilization among Black survivors of adolescent and young adult cancer.

BACKGROUND: Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. METHODS: National Health Interview Survey data (2010-2018) were analyzed that identified non-Hispanic Black (hereafter, Black) survivors of AYA cancer and age- and sex-matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. RESULTS: The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR], 1.64; p < .001), use mental health care (OR, 1.53; p = .027), report an inability to afford mental health care (OR, 3.82; p < .001), and use medication for anxiety and/or depression (OR, 2.16; p = .001). Forty-one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18-39 years (vs. 40-64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. CONCLUSIONS: A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population.

Clinical, demographic factors, and substance use among Hispanic and non-Hispanic young adult childhood cancer survivors.

PURPOSE: The purpose of this study is to examine the protective and risk factors of substance use behaviors (tobacco, marijuana, e-cigarette, and alcohol) among young adult childhood cancer survivors. The study focused on clinical (receipt of cancer-related follow-up care, treatment intensity, late effects, depressive symptoms, self-rated health) and demographic (race/ethnicity, neighborhood socioeconomic status) factors and their associations with substance use. METHODS: Participants were from the Project Forward cohort, a population-based study of young adult survivors of childhood cancers. Participants (N = 1166, Mage = 25.1 years) were recruited through the Los Angeles Cancer Surveillance Program (Cancer Registry covering Los Angeles County, California). Multivariate path analyses were performed with substance use as the outcome variables and clinical and demographic factors as independent variables. Covariates included age and sex. FINDING: Substance use was positively associated with depressive symptoms, and inversely associated with cancer-related follow-up care, female sex, age, Hispanic ethnicity, treatment intensity, and self-rated health. Neighborhood SES was inversely associated with tobacco use, while being positively associated with binge drinking and e-cigarette use. The results highlight the interrelationship between the clinical and demographic variables and their associations with different substance use. CONCLUSION: Findings support the need for effective interventions targeting substance use behavior among CCS. This will help improve long-term outcomes and mitigate the risk for early morbidity.

Common antiretroviral combinations are associated with somatic depressive symptoms in women with HIV.

OBJECTIVE: While modern antiretroviral therapy (ART) is highly effective and safe, depressive symptoms have been associated with certain ART drugs. We examined the association between common ART regimens and depressive symptoms in women with HIV (WWH) with a focus on somatic vs. nonsomatic symptoms. DESIGN: Analysis of longitudinal data from the Women's Interagency HIV Study. METHODS: Participants were classified into three groups based on the frequency of positive depression screening (CES-D ≥16): chronic depression (≥50% of visits since study enrollment), infrequent depression (<50% of visits), and never depressed (no visits). Novel Bayesian machine learning methods building upon a subset-tree kernel approach were developed to estimate the combined effects of ART regimens on depressive symptoms in each group after covariate adjustment. RESULTS: The analysis included 1538 WWH who participated in 12 924 (mean = 8.4) visits. The mean age was 49.9 years, 72% were Black, and 14% Hispanic. In the chronic depression group, combinations including tenofovir alafenamide and cobicistat-boosted elvitegravir and/or darunavir were associated with greater somatic symptoms of depression, whereas those combinations containing tenofovir disoproxil fumarate and efavirenz or rilpivirine were associated with less somatic depressive symptoms. ART was not associated with somatic symptoms in the infrequent depression or never depressed groups. ART regimens were not associated with nonsomatic symptoms in any group. CONCLUSIONS: Specific ART combinations are associated with somatic depressive symptoms in WWH with chronic depression. Future studies should consider specific depressive symptoms domains as well as complete drug combinations when assessing the relationship between ART and depression.

Psychological distress and mental health care utilization among Hispanic/Latino survivors of adolescent and young adult cancer.

PURPOSE: Survivors of adolescent and young adult (AYA) cancer experience psychological distress and insufficient access to mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes in this population. This study compared psychological distress, mental health care use, and inability to afford mental health care between Hispanic/Latino survivors of AYA cancer and Hispanic/Latino controls. METHODS: The National Health Interview Survey data (2010-2018) were analyzed to identify Hispanic/Latino survivors of AYA cancer and Hispanic/Latino age- and sex-matched non-cancer controls. Sociodemographic, chronic health, modifiable factors, and psychological outcomes were compared using chi-square tests. Logistic regression models with survey weights were used to assess the log-odds of psychological distress in relation to covariates, along with the cancer group. Interactions were evaluated between each variable and cancer group. RESULTS: The study included 370 Hispanic/Latino survivors of AYA cancer (mean time since diagnosis = 12.34 years) and 3700 Hispanic/Latino controls. Compared to controls, survivors were more likely to report moderate/severe distress (OR = 2.23, p < 0.001), use of mental health care (OR = 2.11, p < 0.001) and inability to afford mental health care (OR = 3.05, p < 0.001). Forty-one percent of survivors reported moderate/severe distress and only 16% utilized mental health care. Among survivors, having more than two chronic health conditions and public insurance (compared to private insurance) were associated with the presence of moderate/severe distress. Among survivors experiencing moderate/severe distress, lack of insurance was associated with decreased utilization of mental health care. CONCLUSIONS: Having cancer as an AYA may exacerbate disparities in psychological health within the Hispanic/Latino population.

Neuropsychiatric complications and associated management in adolescent and young adult cancer survivors: An All of Us study.

BACKGROUND: About 4.5% of new cancer cases affect adolescent and young adult aged between 15 and 39 years in the United States (US). However, the effect of neuropsychiatric conditions on long-term adolescent and young adult cancer (AYAC) survivors has not been formally investigated. Thus, the impact and management of late neuropsychiatric complications in AYAC survivors compared to non-cancer-matched controls (NCMC) in the US were evaluated using the All of Us (AoU) Research Program. METHODS: Participants in the AoU Controlled Tier Dataset (v6) diagnosed with cancer between ages 15 and 39 were identified from electronic health records and surveys. AYAC survivors were matched with NCMC using the optimal pair-matching algorithm at a 1:4 ratio. Data on past diagnoses, current follow-up care, and treatment patterns of neuropsychiatric complications were collected. RESULTS: Analysis was performed on 788 AYAC survivors and 3152 NCMC. AYAC survivors, with an average of 8.8 years since their first cancer diagnosis, were more likely than NCMC to receive a diagnosis of neuropathy, memory loss and epilepsy (p < 0.001). Survivors also had a higher rate of follow-up care and treatment utilization for these neurological conditions compared to NCMC (p < 0.05). Treatment utilization was highest among survivors receiving care for epilepsy (88%), and lower for neuropathy (70%), memory loss (61%), and chronic fatigue (59%). CONCLUSIONS: This large study reveals that AYAC survivors, on average 9 years after their cancer diagnosis, require more frequent follow-up care for neurological complications compared to non-cancer individuals. However, the management of neuropathy, memory loss, and chronic fatigue is hindered by a lack of mechanism-based effective therapies.

Depressive symptoms and physical activity among young adult survivors of childhood cancer.

OBJECTIVE: Young adult survivors of childhood cancers are less likely to be physically active compared to non-cancer affected controls, putting them at an increased risk for morbidity and mortality. Preliminary research has examined how mental health may contribute to physical activity (PA) in this population; however, those more recently diagnosed and Hispanic survivors have been understudied. The objectives were to examine associations of dimensions of depressive symptoms, demographic characteristics, and cancer-related predictors with PA among a diverse sample of young adult childhood cancer survivors. METHODS: Participants (N = 895) diagnosed with childhood cancer between 1996 and 2010 (53% Hispanic; Mage  = 26.2 ± 4.9 years; Mage  = 14.8 ± 4.4 years at diagnosis) were recruited from the Los Angeles County cancer registry. Self-report surveys assessed current PA, depressive symptoms (i.e., positive affect, negative affect, somatic symptoms, interpersonal problems), late effects of cancer treatment, and demographic factors. Multivariable ordinal regressions examined the study objectives. RESULTS: About 70% of participants engaged in low or moderate frequency PA (fewer than 3 days a week). Participants who were older, female, Asian, or reported more late effects of cancer treatment were less likely to engage in PA. Greater positive affect was significantly associated with higher frequency PA, whereas negative affect, somatic symptoms, and interpersonal problems were not associated with PA. CONCLUSIONS: The findings suggests that positive-but not negative-mental health characteristics are more likely to facilitate or result from PA among young adult survivors of childhood cancers. Interventions seeking to increase PA may benefit from considering positive aspects of mental health/well-being.

Disparities in pediatric cancer survivorship care: A systematic review.

BACKGROUND: Childhood cancer survivors (CCS) experience many long-term health problems that can be mitigated with recommended survivorship care. However, many CCS do not have access to survivorship care nor receive recommended survivorship care. We reviewed the empirical evidence of disparities in survivorship care for CCS. METHODS: This systematic review searched PubMed, CINAHL, and PsycINFO for studies on survivorship care for CCS (PROSPERO: CRD42021227965) and abstracted the reported presence or absence of disparities in care. We screened 7945 citations, and of those, we reviewed 2760 publications at full text. RESULTS: A total of 22 studies reported in 61 publications met inclusion criteria. Potential disparities by cancer treatment (N = 14), diagnosis (N = 13), sex (N = 13), and current age (N = 13) were frequently studied. There was high quality of evidence (QOE) of survivorship care disparities associated with non-White race, Hispanic ethnicity, and being uninsured. Moderate QOE demonstrated disparities among CCS who were unemployed and older. Lower QOE was found for disparities based on cancer diagnosis, cancer treatment, age at diagnosis, time since diagnosis, sex, insurance type, income, educational attainment, and geographic area. CONCLUSIONS: We found strong empirical evidence of disparities in survivorship care for CCS associated with race, ethnicity, and insurance status. Multiple other disparate groups, such as those by employment, income, insurance type, education, cancer diagnosis, age at diagnosis, time since diagnosis, cancer treatment, geographic area, sex, and self-identified gender warrant further investigation. Prospective, multilevel research is needed to examine the role of other patient characteristics as potential disparities hindering adequate survivorship care in CCS.

Factors Associated With Agreement Between Parent and Childhood Cancer Survivor Reports on Child's Health Related Quality of Life.

Pediatric Health Related Quality of Life (HRQoL) among childhood cancer survivors (CCS) measures the impact of illness and treatment from the patient's perspective. However, parents often serve as proxies when the child cannot provide information directly. Studies of agreement between parents' proxy assessment and child's self-report have shown discrepancies. Understanding the reasons for discrepancies is under studied. Thus, this study examined the agreement of 160 parent-CCS dyads on the child's domains of HRQoL by mean difference, intra-class correlation coefficients, and Bland-Altman plots. Differences in agreement were assessed by patients' age, ethnicity, and whether or not they lived with their parents. Overall, the Physical Function Score showed good agreement between parents and CCS (ICC = 0.62), while the Social Function Score had fair agreement (ICC = 0.39). CCS were more likely to rate their Social Function Score higher than their parent. The lowest agreement for the Social Function Score was found for 18-20 years old's (ICC = .254) versus younger or older CCS, and among non-Hispanic whites (ICC = 0.301) versus Hispanics. Differences in agreement varied by patient age and ethnicity, suggesting that other factors, including emotional, familial, and cultural factors, may influence parental awareness of CCS HRQoL.

Trauma Across the Life Span and Multisystem Morbidity in Women With HIV.

OBJECTIVE: Sexual and physical abuse are highly prevalent among women living with HIV (WLWH) and are risk factors for the development of mental health and substance use disorders (MHDs, SUDs), and cognitive and medical comorbidities. We examined empirically derived patterns of trauma, MHD, and SUD, and associations with later cognitive and health outcomes. METHODS: A total of 1027 WLWH (average age = 48.6 years) in the Women's Interagency HIV Study completed the World Mental Health Composite International Diagnostic Interview from 2010 to 2013 to identify MHDs, SUDs, and age at onset of sexual and physical abuse. Then, cognitive impairment, cardiovascular/metabolic conditions, and HIV disease outcomes were assessed for up to 8.8 years. Latent class analysis identified patterns of co-occurring trauma, MHDs, and/or SUDs. Generalized estimating equations determined associations between these patterns and midlife cognitive and medical outcomes. RESULTS: Six distinct profiles emerged: no/negligible sexual/physical trauma, MHD, or SUD (39%); preadolescent/adolescent sexual trauma with anxiety and SUD (22%); SUD only (16%); MHD + SUD only (12%); early childhood sexual/physical trauma only (6%); and early childhood sexual/physical trauma with later MHD + SUD (4%). Profiles including early childhood trauma had the largest number of midlife conditions (i.e., cognitive, cardiovascular, HIV-related). Preadolescent/adolescent sexual trauma with anxiety and SUD predicted both global and domain-specific cognitive declines. Only SUD without trauma predicted lower CD4, whereas childhood trauma with MHD + SUD predicted increased CD8. CONCLUSIONS: WLWH have complex multisystem profiles of abuse, MHD, and/or SUD that predict midlife cognitive, metabolic/cardiovascular, and HIV outcomes. Understanding the interplay between these factors over time can identify risks and personalize preventative and treatment interventions.

Hispanic/Latinos and non-Hispanic whites' childhood cancer survivors and parents: a dyadic analysis of coping resources and mental health.

PURPOSE: While limited, dyadic research demonstrates the interdependent relationship between the health and adjustment after treatment between cancer survivors and caregivers. We examined interrelationships between coping resources and mental health among childhood cancer survivors (CCS)-parent dyads. METHODS: One hundred sixty CCS-parent dyads from the Project Forward pilot study completed validated questions assessing social support, religiosity, spirituality, depressive symptoms, and perceived stress. Bidirectional associations were identified with path analysis utilizing the actor-partner interdependence model (APIM). We used a multigroup approach to test for the moderating effects by Hispanic ethnicity on these relationships. RESULTS: Mean age of CCS was 20 years old, 51% female, 30% diagnosed with leukemia, and mean of 7 years from diagnosis. The mean age of parents was 49 years old and 89% were mothers. For both CCS and parents, perceived social support was inversely associated with their depressive symptoms and perceived stress (e.g., actor effects). Parents' social support was not significantly associated with CCS's depressive symptoms and stress. However, higher perceived social support by the CCS was inversely associated with parents' depressive symptoms (ß = - 0.202, p < 0.01) and perceived stress (ß = - 0.164, p < 0.05) (e.g., partner effects). Additional actor effects were observed between spirituality, religiosity, and depressive systems when we explored the moderating effects of Hispanic ethnicity. CONCLUSION: Partner effects of social support among CCS-parent dyads may influence psychological distress. IMPLICATION FOR CANCER SURVIVORS: Our findings on parent-child associations between social support and psychosocial well-being imply that survivorship care can be enhanced when the social support needs of both survivors and their parents are addressed together.

Intersectionality of Socioecological Factors Associated With Cognitive Function Among Older Women With HIV in the United States: A Structural Equation Model Analysis Using Data From the Women's Interagency HIV Study.

ABSTRACT: Increased life expectancy of people with HIV has health implications including the intersection of the long-term use of antiretroviral treatment, inflammatory events, and age-related immunosenescence. In a cross-sectional study utilizing using the Socio-Eecological Model, we identified pathways of cognitive function (CF) among 448 women with HIV, 50 years and older. A structural equation model showed the direct effects of mood (ß = -0.25, p < .01), comorbidities (ß = --0.13, p < .05), race (ß = --0.13, p < .05), and abuse (ß = 0.27, p < .001) on the latent variable CF. Substance and alcohol use, depressive symptoms, cigarette smoking, and the number of comorbidities are important considerations when designing interventions utilizing using a multi-level and intersectional lens to maximize positive CF outcomes.

Melanoma survival by age group: Population-based disparities for adolescent and young adult patients by stage, tumor thickness, and insurance type.

BACKGROUND: Melanoma survival literature predominantly represents patients >65 years of age. Study of younger patients may reveal potential age-group-specific differences in survival outcome. OBJECTIVE: Identify factors associated with differences in melanoma survival in 2 age groups, adolescents and young adults (AYAs; ages 15-39) and older adults (ages 40-64). METHODS: This population-based registry study included all cases (n = 81,597) of cutaneous melanoma diagnosed at ages 15 to 64 from 2004 to 2015 in California. Age-group-specific multivariable Cox hazard regressions were used. RESULTS: In the adjusted, age-group-specific models, AYA patients with stage IV melanoma had worse survival (hazard ratio: 20.39, 95% CI: 13.30-31.20) than was observed among older adults (hazard ratio: 10.79, 95% CI: 9.33-12.48). Thicker tumors and public insurance were also associated with worse survival for AYAs than observed in models for older adults. AYAs experienced better survival when detected at earlier stages. LIMITATIONS: Registry data do not routinely collect behavioral information or family history of melanoma. CONCLUSIONS: Survival was much worse for AYAs with stage IV melanoma than observed among older adults. To improve AYA survival, early melanoma detection is critical. Greater awareness, suspicion, and screening for AYA melanoma may disrupt delays in diagnosis and reduce the excess burden of mortality from stage IV melanoma in young patients.

Risk of early death in adolescents and young adults with cancer: a population-based study.

BACKGROUND: Advancements in treatment and supportive care have led to improved survival for adolescents and young adults (AYAs) with cancer; however, a subset of those diagnosed remain at risk for early death (within 2 months of diagnosis). Factors that place AYAs at increased risk of early death have not been well studied. METHODS: The Surveillance, Epidemiology, and End Results registry was used to assess risk of early death in AYAs with hematologic malignancies, central nervous system tumors, and solid tumors. Associations between age at diagnosis, sex, race, ethnicity, socioeconomic status, insurance status, rurality, and early death were assessed. RESULTS: A total of 268 501 AYAs diagnosed between 2000 and 2016 were included. Early death percentage was highest in patients diagnosed with hematologic malignancies (3.1%, 95% confidence interval [CI] = 2.9% to 3.2%), followed by central nervous system tumors (2.5%, 95% CI = 2.3% to 2.8%), and solid tumors (1.0%, 95% CI = 0.9% to 1.0%). Age at diagnosis, race, ethnicity, lower socioeconomic status, and insurance status were associated with increased risk of early death in each of the cancer types. For AYAs with hematologic malignancies and solid tumors, risk of early death decreased statistically significantly over time. CONCLUSIONS: A subset of AYAs with cancer remains at risk for early death. In addition to cancer type, sociodemographic factors also affect risk of early death. A better understanding of the interplay of factors related to cancer type, treatment, and health systems that place certain AYA subsets at higher risk for early death is needed to address these disparities and improve outcomes.

Unmet Needs, Barriers, and Facilitators for Conducting Adolescent and Young Adult Cancer Survivorship Research in Southern California: A Delphi Survey.

Introduction: An adolescent and young adult cancer (AYAC) patient is an individual who has received a cancer diagnosis between 15 and 39 years of age. They require significant survivorship care due to a combination of practical, physical, and mental health problems, but research in these areas is sparse. This study aimed to identify the unmet needs, barriers, and facilitators for conducting AYAC survivorship research in Southern California (SoCal) from the providers' and researchers' perspectives. Methods: A two-round, electronically administered Delphi survey study was conducted, involving a panel of 12 health care professionals and/or researchers with substantial work experience in AYAC. A 10-point Likert scale was used to evaluate 24 areas of unmet needs in AYAC survivors, 39 barriers, and 25 facilitators. Results: The top unmet needs in AYAC survivorship requiring research were in mental health issues, improving school/occupational performance, neurocognitive disorders, subsequent malignant neoplasms, and reproductive health. The top barriers identified were as follows: (1) institutions are too short-staffed to administer survivorship studies; (2) oncologists do not have the time/resources; and (3) lack of available funding. The top facilitators identified were as follows: (1) development of a mechanism/program to fund AYAC survivorship research studies; (2) in-person or virtual investigator engagement between children's hospitals and adult cancer centers to discuss research studies; and (3) developing personalized survivorship goals with AYAC patients and survivors to facilitate enrollment into survivorship studies. Conclusion: Experts identified the lack of time, manpower, funding, and resources as major barriers in AYAC survivorship research. Enhancing communication and collaboration with different stakeholders may facilitate AYAC survivorship research efforts within the SoCal region.

Patient Care Satisfaction and Emergency Room Utilization among Young Adult Colorectal Cancer Survivors during the SARS-CoV-2 Pandemic: Lessons Learned.

Introduction: Survivors of colorectal cancer (CRC) are at risk for late effects of therapy and recurrence of cancer. With recurrence rates ranging between 30−40%, follow-up care is needed for both early detection and management of late effects. Cancer care delivery for CRC patients was significantly disrupted by the SARS-CoV-2 pandemic, with decreases of 40% in such services in the United States between April 2020 and 2019. Survivors were left with fewer options for care, potentially causing increases in emergency room (ER) utilization. Methods: This cross-sectional study examined the patterns of ER utilization during the SARS-CoV-2 pandemic among young adult CRC survivors and assessed the relationship between self-reported care satisfaction and ER use. Eligible participants were colon or rectal cancer survivors diagnosed between 18−39 years of age, 6−36 months from diagnosis/relapse, English speaking and residing in the United States. Multivariable logistic regression assessed the association between patient care satisfaction and ER utilization, adjusting for pandemic factors. Covariates were chosen by significance of p < 0.1 at the univariate level and perceived clinical significance. Results: The overall sample (N = 196) had mean age (SD) 32.1 (4.5); 59% were male. Tumor location was colon or rectal in 42% and 57%, respectively, and the majority (56%) were diagnosed with stage 2 disease; 42.6% reported relapsed disease, and 20% had an ostomy. Most survivors (72.5%) had between 1−4 visits to an ER in the last 12 months and were categorized as normal utilizers. Approximately 24.7% of the sample had greater than 4 visits to the ER in the last 12 months and were categorized as super-utilizers. CRC survivors that reported a delay in their follow-up care as a result of the pandemic were two times (OR: 2.05, 95% CI 0.99, 4.24) more likely to be super-utilizers of the ER. Higher self-reported satisfaction with care was associated with a 13.7% lower likelihood of being a super-utilizer (OR: 0.86, 95%CI: −0.68, 1.09). Conclusions: This study found strong associations between delays in care, self-reported care satisfaction, and being a super-utilizer of the ER during the pandemic among young adult CRC survivors off treatment. Increasing patient satisfaction and minimizing care interruptions amongst this vulnerable population may aid in mitigating over-utilization in the ER during an ongoing pandemic.

Substance Use Among Young Adult Survivors of Childhood Cancer With Cognitive Impairment: An Analysis of the Project Forward Cohort.

PURPOSE: Young adult childhood cancer survivors (YACCSs) are often impacted by cancer-related cognitive impairment (CRCI) and psychological distress. Using the Project Forward Cohort, we evaluated the relationship between CRCI and substance use behaviors. METHODS: YACCSs were surveyed between 2015 and 2018 (N = 1,106, female = 50.8%, Hispanic = 51.5%, median age = 25.5 years). Associations between CRCI and substance use (tobacco, binge drinking, marijuana, prescription drug misuse, and e-cigarette/vaporizer) were examined in multivariate logistic or log-binomial regressions, adjusting for child at diagnosis (0-14 years), years since diagnosis, sex, race/ethnicity, cancer type, and treatment intensity. Mediation analysis was performed to determine opportunities for interventions. RESULTS: CRCI was reported by 144 (13.0%) survivors. The highest prevalence was observed in CNS cancers (25.4%) and leukemia (13.3%) survivors. After covariate adjustment, CRCI was associated with 2.26 times the odds of prior 30-day vaping (95% CI, 1.24 to 4.11; P = .007). Mediators with significant indirect effects in the CRCI-vaping relationship include depressive symptoms (Center for Epidemiological Studies Depression Scale) and having two or more cancer-related late effects (P < .05). CONCLUSION: CRCI among YACCSs was associated with reports of vaping. Oncologists should screen for vaping behavior if CRCI is apparent. Increasing access to long-term follow-up clinics, addressing physical and mental health issues, and monitoring and educating on vaping and other substance use behaviors is recommended to improve the long-term health of YACCSs.

Barriers and facilitators of Hispanic/Latino parents caregiving for a childhood cancer survivor: a qualitative study.

PURPOSE: This qualitative study aimed to explore Hispanic parents of childhood cancer survivors (CCS) perceptions of facilitators and barriers to their caregiving experience. METHODS: We conducted semi-structured phone interviews with 15 Hispanic/Latino parents (English and Spanish). Parents were recruited using a purposive sampling method in a safety-net hospital in Los Angeles County from July-September 2020. Interviews were audio-recorded, professionally transcribed, and analyzed in the language they were conducted. Two coders independently coded interviews following reflexive thematic analysis and elements of grounded theory methodology. RESULTS: Most caregivers were mothers caring for leukemia CCS who had finished treatment more than 2 years prior. Caregivers expressed gratitude to social workers for introducing and aiding with the application process for safety-net programs that enabled caregivers to focus on their child's care and well-being. Caregivers revealed the importance of supportive communication with the medical team, particularly after their child's treatment was considered complete. All caregivers found caring for a child with cancer overwhelming, and many described deteriorations in their health and well-being. Financial instability, transportation difficulties, and work disruptions were identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced navigating the healthcare system, seeking care despite lack of legal residency, and staying afloat despite limited employment opportunities. CONCLUSION: Improving navigation to resources and improving relationships with the medical team may reduce the perceived caregiving burden among Hispanic/Latino caregivers throughout their family's cancer journey.

Prevalence and correlates of skin examination among ethnically diverse young adult survivors of childhood cancer.

BACKGROUND: Skin cancer is the most common secondary malignancy among young adult childhood cancer survivors (YA-CCS). Skin examination to detect skin cancer early (including melanoma as well as basal or squamous cell skin cancers), both physician-based (PSE) and self-skin exam (SSE), is recommended, particularly for radiotherapy-exposed YA-CCS who are at high risk of developing skin cancer. METHODS: Awareness and prevalence of skin examination and demographic, clinical, and healthcare correlates were examined in a population-based sample of YA-CCS with diverse cancer types excluding melanoma. Descriptive frequencies and logistic regression models were conducted using sample weights to correct for non-response bias with PSE, SSE and adherence to both as outcomes. RESULTS: The sample comprised 1064 participants with 53% Latino. Eight percent of participants were aware of the need for skin examination; 9% reported receipt of PSE within past 2 years; 35% reported regular SSE; and 6% were adherent to both. Among the radiotherapy-treated, 10% were aware of the need for skin examination, 10% reported recent PSE; 38% reported regular SSE; and 8% were adherent to both. Healthcare and clinical factors including healthcare self-efficacy, engagement in cancer-related follow-up care, greater treatment intensity and greater number of treatment-related late effects were positively associated with PSE and SSE. Latino YA-CCS were less likely to engage in PSE and SSE. CONCLUSION(S): Adherence to recommended screening for skin cancer was low in this at-risk population, notably for YA-CCS exposed to radiotherapy. The development of effective strategies to expand skin cancer screening is needed in this at-risk population.

Examining the Factor Structure of an Adapted Posttraumatic Growth Inventory in a Sample of Childhood Cancer Survivors: A Brief Report.

Posttraumatic growth (PTG) represents positive changes following a trauma, crisis, and/or psychologically distressing event. Experiencing cancer can serve as a traumatic event for patients, resulting in life changes among survivors. Various PTG measures have been used to assess post-cancer change among childhood cancer survivors (CCS), but few have been evaluated for use in this population. This study examined the factor structure of an adapted, 11-item version of the Posttraumatic Growth Inventory (PTGI) among CCS. A randomly selected subgroup of participants (N = 332) was selected from the Los Angeles Cancer Surveillance Program (mean age of 26.5 years at time of survey, mean age at diagnosis of 12 years, primarily male [53.6%], and Hispanic [51.5%]). Participants indicated the degree to which they experienced positive, negative, or no change in their life because of their cancer experience. An exploratory factor analysis (EFA) identified two factors: Appreciation of New Possibilities and Spiritual Change. The adapted, 11-item PTGI was deemed appropriate for use among CCS. Additional research is needed to confirm the use of the two-factor model with confirmatory factor analysis in an independent sample. Future research on PTG among CCS can consider spiritual change as a potential independent factor.

Clinical Trial Participation: A Qualitative Study of Adolescents and Younger Adults Recently Diagnosed with Cancer.

Purpose: Although participation of adolescents and young adults (AYAs) in cancer clinical trials (CCTs, i.e., cancer-directed treatment studies) is low, their decision-making perspectives are not well understood, especially following recent diagnosis. Methods: Semistructured interviews with younger AYAs (15-21 years old) eligible for a CCT were to be held within 60 days of beginning treatment at Children's Hospital Los Angeles, an academic pediatric hospital. Using grounded theory methods, key themes regarding CCT participation, barriers, and facilitators were identified from interview transcripts. Thematic saturation was confirmed. Results: Of nine participants, three were <18 years old, four Hispanic, six male, six diagnosed with leukemia, eight enrolled in a CCT, and eight also enrolled in ancillary studies. Four overarching themes emerged: (1) Initial Consent encompassed the first discussion of CCT with patients reflecting positive and negative effects of timing, decisional role, and the emotional impact following cancer diagnosis; (2) Informing Participation involved decision-making processes, specific knowledge, comprehension, and external influences; (3) Participant Relationships emphasized the importance of communication and relationships with providers and parents; and (4) Patient Determinants centered on motives from different perspectives, pre-conceived attitudes, and understanding of CCTs. Conclusion: Recommendations for improving CCT participation among younger AYAs include separating the diagnosis/treatment and CCT discussions, assigning AYAs a meaningful decisional role, having ongoing provider conversations, designing trials to minimize burden, and developing age-appropriate decision aids.