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.

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.

Fertility Preservation Discussions Between Young Adult Rectal Cancer Survivors and Their Providers: Sex-Specific Prevalence and Correlates.

BACKGROUND: Young adults (YA) diagnosed with rectal cancer are disproportionately impacted by the gonadotoxic effects of treatment and potential subsequent infertility. OBJECTIVE: The purpose of this study was to characterize the prevalence of fertility preservation measures used, reasons why such measures were not used, and correlates of discussion between providers and YA rectal cancer survivors. DESIGN: An online, cross-sectional survey was administered on the Facebook page of a national colorectal cancer (CRC) advocacy organization. Eligible participants were rectal cancer survivors diagnosed before age 50, between 6 and 36 months from diagnosis or relapse, and based in the US. RESULTS: Participants were 148 rectal cancer survivors. Over half of the survivors reported that their doctor did not talk to them about potential therapy-related fertility complications. Only one-fifth of survivors banked sperm (males) or eggs/embryos (females) prior to their cancer therapy. Older age at diagnosis and greater quality of life were significantly associated with a higher likelihood of fertility discussions among males. Greater quality of life was significantly associated with a higher likelihood of fertility discussion among females. CONCLUSIONS: These findings indicate that the majority of YA rectal cancer survivors do not receive, or cannot recall, comprehensive cancer care, and help to identify patients with rectal cancer who may be at risk for inadequate fertility counseling. Clinicians should provide proper counseling to mitigate this late effect and to ensure optimal quality of life for YA rectal cancer survivors.

Factors associated with syphilis seroprevalence in women with and at-risk for HIV infection in the Women's Interagency HIV Study (1994-2015).

OBJECTIVE: Syphilis rates among women in the USA more than doubled between 2014 and 2018. We sought to identify correlates of syphilis among women enrolled in the Women's Interagency HIV Study (WIHS) to inform targeted interventions. METHODS: The retrospective cross-sectional analysis of secondary data included women with HIV or at-risk of HIV who enrolled in the multisite US WIHS cohort between 1994 and 2015. Syphilis screening was performed at baseline. Infection was defined serologically by a positive rapid plasma reagin test with confirmatory treponemal antibodies. Sociodemographic and behavioural characteristics stratified by baseline syphilis status were compared for women enrolled during early (1994-2002) and recent (2011-2015) years. Multivariable binomial modelling with backward selection (p>0.2 for removal) was used to model correlates of syphilis. RESULTS: The study included 3692 women in the early cohort and 1182 women in the recent cohort. Syphilis prevalence at enrolment was 7.5% and 3.7% in each cohort, respectively (p<0.01). In adjusted models for the early cohort, factors associated with syphilis included age, black race, low income, hepatitis C seropositivity, drug use, HIV infection and >100 lifetime sex partners (all p<0.05). In the recent cohort, age (adjusted prevalence OR (aPOR) 0.2, 95% CI 0.1 to 0.6 for 30-39 years; aPOR 0.5, 95% CI 0.2 to 1.0 for 40-49 years vs ≥50 years), hepatitis C seropositivity (aPOR 2.1, 95% CI 1.0 to 4.1) and problem alcohol use (aPOR 2.2, 95% CI 1.1 to 4.4) were associated with infection. CONCLUSIONS: Syphilis screening is critical for women with HIV and at-risk of HIV. Targeted prevention efforts should focus on women with hepatitis C and problem alcohol use.

Acculturation discrepancy and mental health associations among Hispanic childhood cancer survivors and their parents.

OBJECTIVE: Acculturation discrepancy occurs when the rate of host culture acquisition and/or heritage culture retention between non-native parents and their children diverges. The resulting conflict may exacerbate mental health conditions in already vulnerable populations. The present study examined discrepancies between Hispanic and Anglo-American acculturation, as two separate constructs, and mental health symptomology in Hispanic childhood cancer survivors (HCCS) and their parents. METHODS: Participants were 68 matched parent-child dyads (HCCS (Mage  = 19.4 (2.77) years., 50.0% female); and parent (Mage  = 46.3 (6.07) years., 89.7% female)). Study variables were HCCS posttraumatic-growth (PTG) and quality-of-life (PedsQL); parent posttraumatic stress (PTSD); and parent/HCCS depressive symptoms (CESD) and acculturation orientations. Discrepancy was calculated as the dyadic difference between like acculturation measures. RESULTS: After controlling for covariates, Hispanic acculturation discrepancy and HCCS psychosocial health (a subset of PedsQL) was negatively correlated (r = -0.26, p < 0.5); while Anglo-American acculturation discrepancy was positively associated with HCCS PTG (r = 0.34, p < 0.01) and overall PedsQL (r = 0.24, p < 0.05), and moderated the relationship between parent CESD and HCCS PedsQL. CONCLUSION: The findings suggest that the two acculturation discrepancy constructs have opposite effects. HCCS losing their heritage culture while their parents simultaneously retain it appears to be a deleterious process; whereas, HCCS learning the US culture more rapidly than parents may have protective benefits. This study has important implications for mental health interventions among HCCS. Findings should be used to inform the survivorship clinical community of the value of acculturation timing and parent/child discrepancy.

Palliative care among adult cancer survivors: Knowledge, attitudes, and correlates.

OBJECTIVE: Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors' knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS). METHOD: A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge. RESULTS: Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists. SIGNIFICANCE OF RESULTS: These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.

Parental Cancer-related Information Seeking, Health Communication and Satisfaction with Medical Providers of Childhood Cancer Survivors: Differences by Race/Ethnicity and Language Preference.

For childhood cancer survivors (CCS), parents play an important role in communicating with providers and conveying patient's needs. This exploratory study examined the prevalence of cancer-related information-seeking among parents of CCS and investigated the association between parents' race/ethnicity and language preference with health communication and satisfaction with child's medical providers. One hundred and sixty CCS and their parents from two hospitals in Los Angeles County were recruited from the SEER registry. Multivariable logistic regression analyses assessed associations between parents' race/ethnicity and language preference and their health communication with their child and with their child's medical care providers. Among the parents, 29% were Spanish-speaking Hispanics, 27% English-speaking Hispanics, and 43% English-speaking non-Hispanics. Regardless of language preference, Hispanic parents were more likely than non-Hispanic parents to receive health information about their CCS's cancer from hospital sources versus the internet. There was no difference by ethnicity/language in parent satisfaction with their CCS's medical provider. Spanish-speaking Hispanic parents were more likely to report talking to their CCS about the need for cancer-related follow-up care compared to non-Hispanic English-speaking parents. These findings point to the potential importance of parents' ethnicity and language for sources of health information and frequency of communication with their CCS about their cancer care.

Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population-based registry studies of pediatric cancers.

OBJECTIVE: The Intensity of Treatment Rating (ITR) Scale condenses treatment and clinical characteristics into a single measure to study treatment effects on downstream health outcomes across cancer types. This rating was originally developed for clinicians to determine from medical charts. However, large studies are often unable to access medical charts for all study participants. We developed and tested a method of estimating treatment intensity (TI) using cancer registry and patient self-reported data. METHODS: We estimated two versions of TI for a cohort of pediatric cancer survivors-one utilized information solely available from cancer registry variables (TIR) and the other included registry and self-reported information (TIS) from survey participants. In a subset of cases (n = 135) for whom the gold standard TI (TIC) was known, both TIR and TIS were compared to TIC by calculating percent agreement and weighted Cohen's kappa, overall and within cancer subtypes. RESULTS: In comparison to TIC, 71% of TI scores from both methods were in agreement (k = 0.61 TIR/0.54 TIS). Among subgroups, agreement ranged from lowest (46% TIR/39% TIS) for non-defined tumors (e.g., "Tumor-other"), to highest (94% TIR/94% TIS) for acute lymphoblastic leukemia (ALL). CONCLUSIONS: We developed a methodology to estimate TI for pediatric cancer research when medical chart review is not possible. High reliability was observed for ALL, the most common pediatric cancer. Additional validation is needed among a larger sample of other cancer subgroups. The ability to estimate TI from cancer registry data would assist with monitoring effects of treatment during survivorship in registry-based epidemiological studies.

Prevalence and correlates of adherence to skin examination among adolescent and young adult survivors of melanoma from the Project Forward Study.

BACKGROUND: Melanoma is a common cancer among adolescents and young adults (AYAs), yet adherence to recommended surveillance and factors related to adherence are not well understood in this population. This study assessed the prevalence and correlates of physician-conducted skin examination (PSE) and skin self-examination (SSE) among AYA-aged long-term survivors of melanoma. PROCEDURES: Melanoma cases were identified from the Los Angeles County cancer registry and surveys were then completed by 128 respondents diagnosed between the ages 0 and 24, with stage 1 melanoma or higher, at least 5 years from diagnosis, and who were between the ages 18 and 39 at the time of survey. RESULTS: Eighty-two percent of AYA melanoma survivors reported SSE within the past 6 months, while 65% reported annual PSE. Greater health care self-efficacy was positively associated with adherence to PSE, SSE, and both types of skin examinations (P < .01). Higher socioeconomic status and having a regular source of primary health care were positively associated with annual PSE and adherence to both surveillance practices (P < .05 and P < .01, respectively). Hispanic ethnicity was negatively associated with annual PSE compared to non-Hispanics (P < .01), and greater depressive symptoms were negatively associated with adherence to both skin examinations (P < .05). CONCLUSIONS: High rates of SSE were observed, but PSE adherence was lower than optimal in this sample. Interventions to improve PSE are needed for at-risk AYA survivors of melanoma, and strategies that help melanoma survivors navigate the health care system and access primary care may facilitate greater adherence.

Relationships between parent and adolescent/young adult mental health among Hispanic and non-Hispanic childhood cancer survivors.

PURPOSE: To examine associations between parents and adolescent and young adult (AYA) childhood cancer survivors' (CCS) mental health, and differences by Hispanic ethnicity. SAMPLE: Participants were 129 CCS (Mage = 19.5 yrs.; 49.9% female) and their parents (Mage = 49.0 yrs.; 87.6% female); 52.7% identified as Hispanic. METHODS: CCS completed assessments of Depressive Symptoms (CES-D), Posttraumatic Growth (PTG) and Pediatric Quality of Life (PedsQL), while parents completed CES-D, Perceived Stress (PSS) and Posttraumatic Stress Disorder (PTSD) measures. RESULTS: After controlling for covariates, all three negative parental mental health measures (Parent CES-D, PSS, and PTSD), were positively associated with CCS CES-D indicating that higher depressive symptoms and stress in parents was associated with higher depressive symptoms in CCS. Parent CES-D was negatively associated with CCS PedsQL and parent PSS was negatively associated with CCS PTG. Moderation analysis revealed parent PSS to be negatively associated with PedsQL and positively related to CES-D among Hispanic families only. CONCLUSION: Higher parental negative mental health measures may adversely affect CCS levels of depression, while lower values for parental negative health measures were associated with positive CCS mental health outcomes in AYA. Hispanic parents experience more associations with stress than non-Hispanics. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Long-term survivorship follow-up care guidelines should address the mental health needs of both parents and CCS, paying particular attention to perceived stress in Hispanic families.

Impact of Medicare Part D on mental health treatment and outcomes for dual eligible beneficiaries with HIV.

Depression is common among women with HIV and untreated depression can result in poor quality of life and worsen HIV outcomes. Women with HIV who are dually enrolled in Medicaid and Medicare faced a potential disruption in medication access when Medicare Part D was implemented in 2006. The goal of this study was to estimate the effects of Medicare Part D implementation on antidepressant use, depressive symptoms, and hospitalization in Medicaid-Medicare dual eligible women with HIV. This study used 2003-2008 data from the Women's Interagency HIV Study. The effects of Medicare Part D were estimated using a difference-in-differences approach, adjusting for temporal trends using a matched control group of Medicaid-only enrollees. Before Medicare Part D implementation, dual eligibles differed from Medicaid-only enrollees in antidepressant use and hospitalization, despite having identical prescription drug coverage through Medicaid. For dual enrollees, the transition to Medicare Part D was not associated with changes in antidepressant use, depressive symptoms, or hospitalization. We did not find disruptive effects on antidepressant use and related outcomes among dual eligibles in this study. Stable antidepressant use may be due to better access to medical care for dual eligibles through Medicare both before and after Medicare Part D implementation, which may have eclipsed any effects of the transition. It may also signal that classification of antidepressants as a protected drug class under Medicare Part D was effective in preventing psychiatric medication disruption.

Associations Between Medicare Part D and Out-of-Pocket Spending, HIV Viral Load, Adherence, and ADAP Use in Dual Eligibles With HIV.

BACKGROUND: The implementation of Medicare part D on January 1, 2006 required all adults who were dually enrolled in Medicaid and Medicare (dual eligibles) to transition prescription drug coverage from Medicaid to Medicare part D. Changes in payment systems and utilization management along with the loss of Medicaid protections had the potential to disrupt medication access, with uncertain consequences for dual eligibles with human immunodeficiency virus (HIV) who rely on consistent prescription coverage to suppress their HIV viral load (VL). OBJECTIVE: To estimate the effect of Medicare part D on self-reported out-of-pocket prescription drug spending, AIDS Drug Assistance Program (ADAP) use, antiretroviral adherence, and HIV VL suppression among dual eligibles with HIV. METHODS: Using 2003-2008 data from the Women's Interagency HIV Study, we created a propensity score-matched cohort and used a difference-in-differences approach to compare dual eligibles' outcomes pre-Medicare and post-Medicare part D to those enrolled in Medicaid alone. RESULTS: Transition to Medicare part D was associated with a sharp increase in the proportion of dual eligibles with self-reported out-of-pocket prescription drug costs, followed by an increase in ADAP use. Despite the increase in out-of-pocket costs, both adherence and HIV VL suppression remained stable. CONCLUSIONS: Medicare part D was associated with increased out-of-pocket spending, although the increased spending did not seem to compromise antiretroviral therapy adherence or HIV VL suppression. It is possible that increased ADAP use mitigated the increase in out-of-pocket spending, suggesting successful coordination between Medicare part D and ADAP as well as the vital role of ADAP during insurance transitions.

Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors.

PURPOSE: Childhood cancer survivors (CCS) report high unmet information needs. This study examined the prevalence of cancer-related information-seeking among CCS and investigated associations between information-seeking behavior and positive health outcomes such as follow-up care. METHODS: Participants (n = 193) were young adult CCS diagnosed with cancer in Los Angeles County, 54% of Hispanic ethnicity, with a mean age of 19.87, in remission, and at least 2 years from completion of treatment. CCS were asked where they accessed health information related to their cancer with response options categorized into four information domains: hospital resources, social media, other survivors, and family members. Multivariable logistic regression was used to assess variables associated with each information domain, including sociodemographics, post-traumatic growth (i.e., reporting positive changes since cancer diagnosis), health care engagement, level of education, and health insurance status. RESULTS: Hospital resources were the most commonly accessed information domain (65.3%), and CCS of Hispanic ethnicity (vs. non-Hispanic) were more likely to access this source. Seeking information from other cancer survivors was positively associated with follow-up care and post-traumatic growth. Hispanic CCS were marginally less likely to seek information from other survivors and family than non-Hispanics. CONCLUSIONS: While CCS obtain information from a variety of sources, hospital resources are an important site for access, particularly for individuals of Hispanic ethnicity. Information sharing between survivors may promote positive health care engagement; however, Hispanic CCS may be less likely to utilize this resource and may face barriers in information sharing with other cancer survivors.

Acculturation, Mental Health, and Quality of Life among Hispanic Childhood Cancer Survivors: A Latent Class Analysis.

Objective: Acculturation appears to be an important aspect of the association between ethnicity and disease, but it has not been explored in depth among childhood cancer survivors (CCS). The purpose of our study was to identify distinct acculturative profiles among Hispanic CCS and to assess differences in quality of life and depressive symptoms. Design: Latent class analysis was used to identify distinct acculturative profiles using 9 indicator items reflecting Hispanic and Anglo cultural orientation. Multinomial logistic regression was performed to explore differences in depressive symptoms and quality of life between acculturation classes. Setting and Participants: Participants were diagnosed in Los Angeles County, California, USA between 2000-2007 and were recruited for the study in 2009. Main Outcome Measures: Center for Epidemiologic Studies depression scale and the PedsQL 4.0 quality of life scale. Results: Three distinct acculturation classes emerged. All classes displayed a high probability of endorsing all Anglo orientation items. One class additionally demonstrated a high probability of endorsing all Hispanic orientation items and was labeled bicultural 40%); another demonstrated low probability of endorsing the Hispanic items so was labeled assimilated (32%); and the last demonstrated a high probability of endorsing only the Hispanic items related to language use and was labeled linguistically Hispanic/culturally Anglo (LH) (28%). Conclusions: The assimilated group had significantly more depressive symptoms and lower quality of life than the other two groups. This may indicate that loss of the Hispanic culture may be associated with poorer psychosocial health among CCS.

Posttraumatic growth among childhood cancer survivors: Associations with ethnicity, acculturation, and religious service attendance.

This study assessed the association between ethnicity, religious service attendance (RSA), and acculturation with posttraumatic growth (PTG) in a diverse sample of 235 childhood cancer survivors (CCS). PTG scores were estimated for each ethnicity, and by level of RSA and acculturation. There was a significant curvilinear relationship (inverted U) between RSA and PTG, such that moderate levels of RSA were associated with the highest PTG scores. Hispanics reported the highest PTG, and both Hispanic and Anglo cultural orientation were significantly positively associated with PTG. CCS with high or low frequency of RSA as well as Hispanic CCS who lack a strong sense of cultural identity may benefit from targeted efforts to promote psychosocial adaptation in the aftermath of cancer.

Supporting long-term follow-up of young adult survivors of childhood cancer: Correlates of healthcare self-efficacy.

BACKGROUND: Healthcare self-efficacy (HCSE), the perceived confidence to manage one's health care, has been identified as a critical component in the transition process from pediatric to adult-oriented care for childhood cancer survivors (CCSs). HCSE is amenable to intervention and associated with long-term follow-up care among CCSs. However, factors associated with HCSE have not been fully explored among CCSs. PROCEDURE: We identified correlates of HCSE among a sample of CCSs (n = 193). Descriptive statistics and linear regression methods were used in this cross-sectional analysis. RESULTS: In univariate analyses, higher physical and psychosocial quality of life, posttraumatic growth, and religious/spiritual importance were associated with higher HCSE. Attendance at a survivorship clinic, having a regular source of care (both noncancer and oncologist), and any type of health insurance were also associated with HCSE. Hispanic ethnicity was negatively associated with HCSE relative to non-Hispanics. In a multivariable model, psychosocial quality of life, religious/spiritual importance, survivorship clinic attendance, having a regular oncologist, and Hispanic ethnicity remained significantly associated with HCSE. CONCLUSIONS: CCSs who reported greater well-being, who rated religion and spirituality of high importance, and who accessed specialized cancer services expressed greater HCSE. Hispanic CCSs, however, reported less HCSE than non-Hispanics. Interventions that attend to the quality of life and spiritual needs of CCSs have potential to build HCSE to support the healthcare transition process. Because Hispanic CCSs may be at risk of lower perceived confidence to navigate their health care, culturally competent, efficacy-enhancing interventions are needed for this population.

Cancer-related follow-up care among Hispanic and non-Hispanic childhood cancer survivors: The Project Forward study.

BACKGROUND: Follow-up care is critical for childhood cancer survivors (CCS), who are at high risk for comorbidities and late effects of cancer treatments. Understanding the factors associated with maintaining follow-up care is needed, especially for Hispanic CCS, who have been under-represented in previous studies. METHODS: Risk factors and protective factors for receiving cancer-related follow-up care were examined among 193 Los Angeles County CCS diagnosed between 2000 and 2007 (54% Hispanic; mean ± standard deviation age, 19.9 ± 2.8 years; age at diagnosis, 12.1 ± 3.0 years; time since diagnosis, 7.8 ± 2.0 years). Self-report surveys were used to assess follow-up care, insurance status, demographics, clinical factors, and psychosocial risk (eg, depression) and protective (eg, self-efficacy [SE]) factors. Multivariable logistic regression was used to identify factors associated with the previous receipt of cancer-related follow-up care (in prior 2 years) and the intent to seek future cancer-related follow-up care. RESULTS: Seventy-three percent of CCS reported a cancer follow-up visit in the previous 2 years, which was positively associated (P < .05) with having health insurance, white ethnicity (vs Hispanic), younger age, and greater treatment intensity. Sixty-nine percent reported an intent to receive follow-up care in the next 2 years, which was positively associated (P < .05) with having health insurance and greater SE. CONCLUSIONS: Hispanics and older CCS were more likely to lack previous follow-up care. Because health insurance was strongly associated with both previous follow-up care and the intent to seek care, the current results indicate that recent changes in health coverage may improve follow-up among CCS. Interventions targeting improved SE may help increase intent to receive follow-up care for this population.

Post-traumatic growth among an ethnically diverse sample of adolescent and young adult cancer survivors.

OBJECTIVE: Although some survivors of childhood cancer report significant psychosocial distress, many also report having derived benefits, or post-traumatic growth (PTG), from their cancer experience. This study examines PTG and its correlates among an ethnically diverse sample of adolescent/young adult (AYA) cancer survivors who have recently completed treatment. METHODS: Survivors of childhood cancer (n = 94; 47% Hispanic), ages 11-21 and within 6 months of completing cancer therapy, were recruited from three pediatric cancer centers. Participants completed a structured interview that assessed demographics, PTG, post-traumatic stress symptoms, health-related quality of life, optimism, and depressive symptoms. Diagnosis/treatment information was collected from each patient's medical record. Multiple regression analyses were used to identify significant correlates of PTG. RESULTS: The majority of survivors reported positive growth. PTG was positively associated with psychosocial functioning and post-traumatic stress symptoms and inversely associated with physical functioning and depressive symptoms. PTG was significantly lower among survivors of bone tumors (vs. survivors of other cancers) and Hispanic survivors who primarily spoke English at home (vs. Hispanics who primarily spoke Spanish at home and non-Hispanics). PTG was not significantly related to age, sex, optimism, cancer treatment modality, duration of treatment, or treatment intensity. CONCLUSIONS: The AYA survivors commonly reported PTG in the immediate aftermath of cancer treatment. Findings regarding PTG among more acculturated Hispanic and bone tumor AYA survivors may help to inform risk-adapted clinical interventions, among those transitioning from active treatment to post-treatment surveillance, to mitigate negative long-term sequelae and enhance positive psychosocial adaptation from the cancer diagnosis and treatment.

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.

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.