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PURPOSE: Survivors of adolescent and young adult (AYA) cancer face significant psychological distress and encounter barriers accessing mental health care. However, limited research exists on psychological health among lesbian, gay, and bisexual (LGB) survivors of AYA cancer, particularly in comparison with heterosexual survivors and LGB individuals without a history of cancer. METHODS: Using the National Health Interview Survey (2013-2018), we identified LGB survivors of AYA cancer, LGB individuals without a history of cancer, and heterosexual survivors of AYA cancer. Sociodemographic, chronic health conditions, modifiable factors (such as smoking and alcohol use), and psychological outcomes were assessed using chi-square tests. Logistic regression models, adjusted for survey weights, evaluated the odds of psychological distress by cancer status after accounting for covariates. Interactions between variables and cancer status were explored. RESULTS: The study comprised 145 LGB survivors, 1450 LGB individuals without a history of cancer, and 1450 heterosexual survivors. Compared to heterosexual survivors, LGB survivors were more likely to report severe distress (aOR = 2.26, p = 0.021) and had higher odds of reporting a mental health care visit (aOR = 1.98, p = 0.003). Odds of severe distress (aOR = 1.36, p = 0.36) and reporting a mental health care visit (aOR = 1.27, p = 0.29) were similar between LGB survivors and LGB individuals without a history of cancer. While 47.8% of LGB survivors reported moderate/severe distress, only 29.7% reported a mental health care visit. CONCLUSION: A history of cancer during the AYA years is associated higher odds of severe psychological distress among LGB survivors compared to heterosexual survivors. However, many LGB survivors with psychological distress have not accessed mental health care.
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Sobreviventes de Câncer , Angústia Psicológica , Minorias Sexuais e de Gênero , Humanos , Feminino , Masculino , Adulto Jovem , Adolescente , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Minorias Sexuais e de Gênero/psicologia , Minorias Sexuais e de Gênero/estatística & dados numéricos , Adulto , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Serviços de Saúde Mental/estatística & dados numéricos , Estresse Psicológico/epidemiologiaRESUMO
Introduction: Basal cell carcinoma (BCC) is the most common malignancy in the United States. The majority of cases are identified in Non-Hispanic Whites (NHW) and are far less demonstrated in patients of colour (POC). However, the Hispanic population represents a large and growing proportion of the US population, and skin cancer diagnoses in Hispanics are rising. Thus, the goal of this study is to examine clinicopathologic differences between BCC in Hispanics versus NHW. Methods: A retrospective chart review of Hispanic and NHW patients with BCC at Los Angeles County + USC Medical Center from January 2018 to March 2020 was performed. In total, 101 BCC samples from the first 100 patients identified of Hispanic ancestry, as well as 50 BCC samples identified from the first 50 patients identifying as NHW, were included for analysis. Patient characteristics (age, sex, medical history, and ethnicity), as well as tumour characteristics (location, subtype, tumour depth, and perineural invasion), were collected. We used between subjects t-tests for continuous variables, and chi-square tests for categorical variables. Results: In total, 151 specimens were collected amongst 122 subjects (79 Hispanics and 43 NHW patients). Among NHW, the majority of patients (74.4%) were men, but among the Hispanic population, the majority (68.4%) were female (p < 0.001). Prior history of other skin cancer was more common among NHW (67.4%) than Hispanics (31.6%) (p=<0.001). The Hispanic population had a significantly higher proportion of head and neck tumours (p = 0.0004) but a lower proportion of extremity tumours (p = 0.001) compared to NHW. Pigmented BCC was significantly more common among Hispanic patients (p < 0.01). Finally, within the Hispanic group, there was a significant association between sex and histology (p = 0.004), with Hispanic men demonstrating more aggressive mix histology compared to Hispanic women. Discussion: Our study supports the notion that BCC disparities occur among POC compared to NHW. This includes variations in epidemiologic factors such as sex and past medical history, primary tumour location, and pathologic characteristics. Further research should be conducted to identify additional differences in skin cancer presentation in POC to reduce the gaps in skin cancer knowledge and care.
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Importance: Since 2021, American College of Surgeons Commission on Cancer (CoC) accreditation standards require providing a survivorship program for patients with adult-onset cancer treated with curative intent. Since more than 70% of all patients with cancer in the US are treated at CoC-accredited facilities, this presents an opportunity for a landscape analysis of survivorship care availability. Objective: To determine the prevalence, types, and outcomes of cancer survivorship services at CoC-accredited facilities. Design, Setting, and Participants: This survey study used an anonymous, online, cross-sectional survey conducted from May 4 to 25, 2023. Participants were CoC-accredited facilities in the US representing diverse CoC program categories, institutional characteristics, geographic regions, and practice types. Department of Veterans Affairs cancer programs were excluded due to data usage restrictions. Data were analyzed from July to October 2023. Exposure: CoC Survivorship Standard 4.8 was released in October 2019 and programs were expected to adhere to the Standard beginning January 1, 2021. Main Outcomes and Measures: Questions included self-reported survivorship program characteristics, availability of services aligned to CoC Survivorship Standard 4.8, and perceived program impacts. Response frequencies and proportions were determined in aggregate and by CoC program category. Results: There were 1400 eligible programs, and 384 programs participated (27.4% response rate). All regions and eligible program categories were represented, and most had analytic caseloads of 500 to 4999 patients in 2021. Most survivorship program personnel included nurses (334 programs [87.0%]) and social workers (278 programs [72.4%]), while physical (180 programs [46.9%]) and occupational (87 programs [22.7%]) therapists were less common. Services most endorsed as available for all survivors were screening for new cancers (330 programs [87.5%]), nutritional counseling (325 programs [85.3%]), and referrals to specialists (320 programs [84.7%]), while treatment summaries (242 programs [64.7%]), and survivorship care plans (173 programs [43.0%]), sexual health (217 programs [57.3%]), and fertility (214 programs [56.9%]) were less common. Survivorship services were usually delivered by cancer treatment teams (243 programs [63.3%]) rather than specialized survivorship clinics (120 programs [31.3%]). For resources needed, additional advanced practice clinicians with dedicated survivorship effort (205 programs [53.4%]) and electronic health record enhancements (185 programs [48.2%]) were most endorsed. Lack of referrals and low patient awareness were endorsed as the primary barriers. A total of 335 programs (87.2%) agreed that Survivorship Standard 4.8 helped advance their programs. Conclusions and Relevance: These findings of this survey study of CoC-accredited programs establish a benchmark for survivorship care delivery in the US, identify gaps in specific services and opportunities for intervention, contribute to longitudinal reevaluation for tracking progress nationally, and suggest the value of survivorship care standards.
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Acreditação , Sobreviventes de Câncer , Neoplasias , Sobrevivência , Humanos , Estados Unidos , Estudos Transversais , Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/terapia , Neoplasias/mortalidade , Acreditação/estatística & dados numéricos , Institutos de Câncer/estatística & dados numéricos , Institutos de Câncer/normas , Inquéritos e Questionários , Feminino , MasculinoRESUMO
BACKGROUND: Interpersonal communication is a crucial component of the cancer experience that can contribute to managing cancer care and improving cancer survivors' and caregivers' quality of life. Cultural and contextual factors may impact Hispanic childhood cancer survivor (CCS) and parent caregiver relationships and communication. This study sought to describe the healthcare communication experiences of Hispanic parents with CCS, families, and medical providers. METHODS: We conducted 15 semi-structured interviews with Hispanic caregivers from a safety-net hospital in Los Angeles County. Interviews were conducted in English and Spanish, audio-recorded and professionally transcribed, and analyzed using a thematic approach. RESULTS: Caregivers shared the importance and impact of medical communication when exploring the "first big talk" of the diagnosis, uncertainty about treatment, navigating multiple providers, therapeutic communication (i.e., providing emotional reassurance), and current and lingering effects of cancer. All caregivers shared "good communication" experiences, while others shared various barriers to communication, including a lack of understanding of the cancer diagnosis and caregiver experience, psychological challenges impacting communication, cultural and language differences, physical factors that limit communication, and young age of child impacting communication with caregivers. CONCLUSIONS: Our findings suggest that a strong interpersonal communication skill set for clinicians can contribute to managing cancer care and improving caregivers' psychological adjustment.
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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.
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Negro ou Afro-Americano , Sobreviventes de Câncer , Angústia Psicológica , Humanos , Feminino , Masculino , Adulto Jovem , Adolescente , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Adulto , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/etnologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Estresse Psicológico/epidemiologia , Serviços de Saúde Mental/estatística & dados numéricosRESUMO
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.
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Sobreviventes de Câncer , Hispânico ou Latino , Transtornos Relacionados ao Uso de Substâncias , Humanos , Feminino , Masculino , Sobreviventes de Câncer/estatística & dados numéricos , Sobreviventes de Câncer/psicologia , Hispânico ou Latino/estatística & dados numéricos , Hispânico ou Latino/psicologia , Adulto , Adulto Jovem , Los Angeles/epidemiologia , Fatores de Risco , Estudos de Coortes , Adolescente , Depressão/epidemiologia , Neoplasias/terapia , Neoplasias/etnologia , Neoplasias/psicologiaRESUMO
Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.
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Neoplasias , Participação do Paciente , Humanos , Adolescente , Adulto Jovem , Técnica Delphi , Oncologia , Neoplasias/terapiaRESUMO
PURPOSE: To examine the prevalence of female sexual dysfunction (FSD), male erectile dysfunction (ED), and the prevalence and correlates of sexual health discussions between early-onset CRC survivors and their health care providers. METHODS: An online, cross-sectional survey was administered in partnership with a national CRC advocacy organization. Respondents (n = 234; diagnosed < 50 years, 6-36 months from diagnosis/relapse) were colon (36.8%) and rectal (63.3%) cancer survivors (62.5% male). The Female Sexual Function Index (FSFI-6) was used to measure FSD, and the International Index of Erectile Function (IIEF-5) was used to measure ED. Survivors reported whether a doctor communicated with them about sexual issues during/after treatment. RESULTS: Among females (n = 87), 81.6% had FSD (mean FSFI-6 score = 14.3 [SD±6.1]). Among males (n = 145), 94.5% had ED (mean IIEF-5 score = 13.6 [SD±3.4]). Overall, 59.4% of males and 45.4% of females reported a sexual health discussion. Among the total sample, older age of diagnosis and relapse were significantly associated with reporting a discussion, while female sex was negatively associated with reporting a sexual health discussion. Among males, older age at diagnosis and relapse, and among females, older age of diagnosis, were significantly associated with reporting a sexual health discussion. CONCLUSION: The prevalence of FSD and ED were high (8 in 10 females reporting FSD, almost all males reporting ED), while reported rates of sexual health discussion were suboptimal (half reported discussion). Interventions to increase CRC provider awareness of patients at risk for not being counseled are needed to optimize long-term health outcomes.
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Neoplasias Colorretais , Disfunção Erétil , Disfunções Sexuais Fisiológicas , Saúde Sexual , Humanos , Masculino , Feminino , Estudos Transversais , Inquéritos e Questionários , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/complicações , Disfunção Erétil/epidemiologia , Disfunção Erétil/complicações , Sobreviventes , Neoplasias Colorretais/epidemiologia , RecidivaRESUMO
BACKGROUND: Understanding affect as a determinant of physical activity has gained increased attention in health behavior research. Fluctuations in affect intensity from moment-to-moment (i.e., affective variability) may interfere with cognitive and regulatory processes, making it difficult to engage in goal-directed behaviors such as physical activity. Preliminary evidence indicates that those with greater trait-level affective variability engage in lower levels of habitual physical activity. However, the extent to which daily fluctuations in affect variability are associated with same-day physical activity levels is unknown. This study used ecological momentary assessment (EMA) to investigate day-level associations between affective variability (i.e., within-subject variance) and physical activity. METHODS: Young adults (N = 231, M = 23.58 ± 3.02 years) provided three months of smartphone-based EMA and smartwatch-based activity data. Every two weeks, participants completed a 4-day EMA measurement burst (M = 5.17 ± 1.28 bursts per participant). Bursts consisted of hourly randomly-prompted EMA surveys assessing momentary positive-activated (happy, energetic), positive-deactivated (relaxed), negative-activated (tense, stressed), and negative-deactivated (sad, fatigued) affect. Participants continuously wore a smartwatch to measure physical activity across the three months. Mixed-effects location scale modeling examined the day-level associations of affective variability (i.e., positive-activated, positive-deactivated, negative-activated, and negative-deactivated) and physical activity, controlling for covariates such as mean levels of affect, between-subject effects of physical activity, time of day, day of week, day in study, and smartwatch wear time. RESULTS: There were 41,546 completed EMA surveys (M = 182.22 ± 69.82 per participant) included in the analyses. Above and beyond mean levels of affect, greater day-level variability in positive-activated affect was associated with greater physical activity on that same day compared to other days (τ = 0.01, p < .001), whereas greater day-level variability in negative-deactivated affect was associated with less physical activity on that same day compared to other days (τ = -0.01, p < .001). Day-level variability in positive-deactivated affect or negative-activated affect were not associated with day-level physical activity (ps > .05) CONCLUSIONS: Individuals were less active on days with greater variability in feeling sad and fatigued but more active on days with greater variability in feeling happy and energetic. Understanding the dynamic relationships of affective variability with day-level physical activity can strengthen physical activity interventions by considering how these processes differ within individuals and unfold within the context of daily life. Future research should examine causal pathways between affective variability and physical activity across the day.
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Avaliação Momentânea Ecológica , Exercício Físico , Humanos , Adulto Jovem , Exercício Físico/psicologia , Comportamentos Relacionados com a Saúde , Smartphone , Inquéritos e Questionários , AdultoRESUMO
PURPOSE: To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors. RESEARCH APPROACH: Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data. FINDINGS: The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child's cancer diagnosis. CONCLUSION: We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.
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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.
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Sobreviventes de Câncer , Sintomas Inexplicáveis , Neoplasias , Humanos , Criança , Feminino , Adulto Jovem , Adulto , Adolescente , Neoplasias/psicologia , Depressão/epidemiologia , Depressão/psicologia , Exercício Físico , Sobreviventes/psicologia , Inquéritos e QuestionáriosRESUMO
Throughout the cancer trajectory, parents of childhood cancer survivors (CCSs) may experience mental and social challenges requiring continual adaptation to cancer-induced stress. Using Lazarus and Folkman's Transactional Model of Stress and Coping framework, this qualitative study aimed to describe Hispanic parents' psychological health and explore their coping strategies. Purposive sampling was used to recruit 15 Hispanic caregivers from a safety-net hospital in Los Angeles County. To be eligible, participants had to be: the primary caregiver of a CCS who had completed active treatment, the primary caregiver or child self-identified as Hispanic, and proficient in English or Spanish. The interviews lasted approximately 60 min, were audio-recorded (in English and Spanish), and professionally transcribed. Data were analyzed following a thematic content analysis with deductive and inductive approaches on Dedoose. Participants described high levels of stress and fear when their child was diagnosed with cancer. They also shared experiencing symptoms of social anxiety, post-traumatic stress disorder, and depression. Participants' coping strategies were encompassed by three major themes: problem-focused, emotion-focused, and avoidant coping strategies. Problem-focused coping strategies included self-efficacy, behavioral change, and social support. Emotion-focused coping strategies included religious practices and positive reframing. Avoidant coping strategies included denial and self-distraction. Despite the evident disparities in psychological health for Hispanic parents of CCSs, gaps remain in designing a culturally tailored program to help alleviate the caregiver burden. This study provides insights regarding coping strategies that Hispanic caregivers use to deal with the psychological impact of their child's cancer diagnosis. Our findings also delve into the contextual and cultural factors that impact psychological adjustment.
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Adaptação Psicológica , Neoplasias , Humanos , Criança , Inquéritos e Questionários , Emoções , Saúde Mental , Neoplasias/terapia , Cuidadores/psicologia , Hispânico ou Latino , Estresse PsicológicoRESUMO
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.
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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.
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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 268â501 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.
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Neoplasias do Sistema Nervoso Central , Neoplasias Hematológicas , Neoplasias , Humanos , Adolescente , Adulto Jovem , Neoplasias/epidemiologia , Neoplasias/terapia , Etnicidade , Classe Social , Neoplasias do Sistema Nervoso Central/epidemiologia , Neoplasias do Sistema Nervoso Central/terapia , Sistema de RegistrosRESUMO
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.
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Sobreviventes de Câncer , Disfunção Cognitiva , Sistemas Eletrônicos de Liberação de Nicotina , Neoplasias , Transtornos Relacionados ao Uso de Substâncias , Humanos , Criança , Feminino , Adulto Jovem , Adulto , Neoplasias/psicologia , Sobreviventes de Câncer/psicologia , Sobreviventes , Transtornos Relacionados ao Uso de Substâncias/psicologiaRESUMO
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.
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Sobreviventes de Câncer , Melanoma , Neoplasias Cutâneas , Humanos , Criança , Adulto Jovem , Prevalência , Autoexame , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/etiologia , Melanoma/diagnósticoRESUMO
Melanoma incidence is increasing, with poor prognosis cases growing faster in California Hispanics than in non-Hispanic whites. Ultraviolet Radiation (UVR) exposure as a child has been found to disproportionately increase the risk of melanoma. To determine correlates of UVR exposure in this high-risk population, we conducted a study in predominately Hispanic 4th and 5th grade classrooms in Los Angeles County, a high UVR environment, during the spring. To address potential reporting bias, electronic UV dosimeters were utilized to objectively measure the association between UVR exposure and constructs (acculturation, sun protective behavior and knowledge, family interventions) obtained on baseline questionnaires (n = 125). Tanning attitude (wanting to get a tan) was associated with lower median time spent outside (1.73 min versus 22.17, AUC 82.08, Sensitivity 0.78, Specificity 0.73) and standard erythemal dose (SED) on weekends, but positively associated with sun protective knowledge. Sun protective knowledge and family discussion of sunscreen were also inversely associated with objectively measured time outside. Students spent a median 30.61 (IQR 19.88) minutes outside per day (SED 0.30, IQR 0.20), with only 35.70% of it occurring in nonschool hours. We determined the majority of UVR exposure in this population occurs at school, providing valuable guidance for future interventions.
Assuntos
Melanoma , Neoplasias Cutâneas , Queimadura Solar , Criança , Humanos , Adolescente , Raios Ultravioleta/efeitos adversos , Luz Solar/efeitos adversos , Autorrelato , Melanoma/etiologia , Comportamentos Relacionados com a Saúde , Protetores Solares , Neoplasias Cutâneas/etiologiaRESUMO
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.
Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Criança , Pais , Cuidadores , Pesquisa Qualitativa , Hispânico ou LatinoRESUMO
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.