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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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Supervivientes de Cáncer , Distrés Psicológico , Minorías Sexuales y de Género , Humanos , Femenino , Masculino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Minorías Sexuales y de Género/psicología , Minorías Sexuales y de Género/estadística & datos numéricos , Adulto , Neoplasias/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Servicios de Salud Mental/estadística & datos numéricos , Estrés Psicológico/epidemiologíaRESUMEN
Evidence suggests neighborhood-level factors contribute to cancer outcomes, though most research focuses on pediatric and adult populations. Using population-based data from the Texas Cancer Registry, we examined neighborhood-level social vulnerability, a composite measure of 14 census tract-level social risk factors, and survival among 112,142 adolescents and young adults with cancer (AYAs, age 15-39 years). We estimated one-, five-, and ten-year overall survival by quintile of social vulnerability and used Cox proportional hazards models (two-sided significance testing) to estimate the association between social vulnerability and all-cause mortality. Survival decreased as social vulnerability increased; for example, five-year survival was 86.5% (95% CI 85.1, 87.0) in the least vulnerable quintile compared to 74.0% (95% CI 73.4, 74.5) in the most vulnerable quintile. Social vulnerability was associated with all-cause mortality in adjusted models (highest vs lowest quintile: aHR 1.55, 95% CI 1.48, 1.63). Achieving equity in AYAs' survival requires interventions to address neighborhood disparities.
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Survivors of adolescent and young adult (AYA, age 15-39 years at diagnosis) cancer are a growing population with the potential to live for many decades after treatment completion. Survivors of AYA cancer are at risk for adverse long-term outcomes including chronic conditions, secondary cancers, impaired fertility, poor psychosocial health and health behaviors, and financial toxicity. Further, survivors of AYA cancer from racially minoritized and low socio-economic status populations experience disparities in these outcomes, including lower long-term survival. Despite these known risks, most survivors of AYA cancer do not receive routine survivorship follow-up care, and research on delivering high-quality, evidence-based survivorship care to these patients is lacking. The need for survivorship care was initially advanced in 2006 by the Institute of Medicine. In 2019, the Quality of Cancer Survivorship Care Framework (QCSCF) was developed to provide an evidence-based framework to define key components of optimal survivorship care. In this commentary focused on survivors of AYA cancer, we apply the QCSCF framework to describe models of care that can be adapted for their unique needs, multi-level factors limiting equitable access to care, and opportunities to address these factors to improve short- and long-term outcomes in this vulnerable population.
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INTRODUCTION: Fertility after cancer is a top concern for adolescents and young adults with cancer (AYAs) (15-39 years old at diagnosis). The authors characterized live births after cancer by race and ethnicity ("race/ethnicity") in a population-based sample of female AYAs. METHODS: This study used Texas Cancer Registry data linked to birth certificates (1995-2016) to estimate cumulative incidence of live birth, based on first live birth after cancer, and compared differences by race/ethnicity. Proportional subdistribution hazards models were used to estimate associations between race/ethnicity and live birth, adjusted for diagnosis age, cancer type, stage, year, and prior live birth, overall and for each cancer type. RESULTS: Among 65,804 AYAs, 10-year cumulative incidence of live birth was lower among non-Hispanic Black AYAs than other racial/ethnic groups: 10.2% (95% confidence interval [CI], 9.4-10.9) compared to 15.9% (95% CI, 14.1-17.9) among Asian or Pacific Islander, 14.7% (95% CI, 14.2-15.3) among Hispanic, and 15.2% (95% CI, 14.8-15.6) among non-Hispanic White AYAs (p < .01). In the adjusted overall model, Black AYAs were less likely to have a live birth after cancer than all other groups. In adjusted models for each cancer type, live birth was significantly less likely for Black AYAs with gynecologic cancers or lymphomas (compared to White AYAs) or thyroid cancers (compared to Hispanic AYAs). CONCLUSION: Black AYAs are less likely than AYAs of other races/ethnicities to have a live birth after cancer, in contrast to patterns of live birth in the general population. Research and action to promote childbearing equity after cancer are imperative.
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Supervivientes de Cáncer , Nacimiento Vivo , Neoplasias , Adolescente , Adulto , Femenino , Humanos , Adulto Joven , Negro o Afroamericano/estadística & datos numéricos , Supervivientes de Cáncer/estadística & datos numéricos , Hispánicos o Latinos/estadística & datos numéricos , Incidencia , Nacimiento Vivo/epidemiología , Neoplasias/epidemiología , Neoplasias/etnología , Sistema de Registros , Texas/epidemiología , Blanco/estadística & datos numéricosRESUMEN
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 o Afroamericano , Supervivientes de Cáncer , Distrés Psicológico , Humanos , Femenino , Masculino , Adulto Joven , Adolescente , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Adulto , Negro o Afroamericano/psicología , Negro o Afroamericano/estadística & datos numéricos , Neoplasias/psicología , Neoplasias/terapia , Neoplasias/etnología , Aceptación de la Atención de Salud/estadística & datos numéricos , Estrés Psicológico/epidemiología , Servicios de Salud Mental/estadística & datos numéricosRESUMEN
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.
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Supervivientes de Cáncer , Servicios de Salud Mental , Neoplasias , Aceptación de la Atención de Salud , Distrés Psicológico , Adolescente , Humanos , Adulto Joven , Hispánicos o Latinos/psicología , Neoplasias/terapia , Neoplasias/psicología , Supervivientes de Cáncer/psicologíaRESUMEN
BACKGROUND: We examined birth defects in offspring of adolescent and young adult (AYA) women with a history of cancer (age 15-39 years at diagnosis). METHODS: We identified AYA women diagnosed with cancer between January 1, 1999, and December 31, 2015 using population-based data from the Texas Cancer Registry; data were linked with live birth and fetal death certificates through December 31, 2016 to identify singleton births to AYA women after diagnosis. Birth defects in offspring through age 12 months were ascertained from the Texas Birth Defects Registry. We estimated risk of birth defects in offspring of AYA women and women without cancer (matched 3:1 by maternal race/ethnicity, maternal age, and offspring year of birth) and compared risk using log binomial regression models. RESULTS: There were 6,882 singleton births to AYA women after diagnosis. Common cancer types were thyroid (28.9%), lymphoma (12.5%), and breast (10.7%). Risk of any birth defect was higher in offspring of AYA women (6.0%) compared with offspring of women without cancer [n = 20,646; 4.8%; risk ratio (RR) 1.24; 95% confidence interval (CI), 1.11-1.38]. Risk of eye or ear (RR, 1.39; 95% CI, 1.03-1.90), heart and circulatory (RR, 1.32; 95% CI, 1.09-1.60), genitourinary (RR, 1.38; 95% CI, 1.12-1.69), and musculoskeletal (RR, 1.37; 95% CI, 1.13-1.66) defects was also higher. CONCLUSIONS: Risk of birth defects was elevated in liveborn and stillborn offspring of AYA women. IMPACT: Although birth defects are rare, AYA women making decisions about pregnancy and prenatal care should receive appropriate counseling and surveillance.
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Neoplasias , Embarazo , Femenino , Adulto Joven , Adolescente , Humanos , Adulto , Lactante , Neoplasias/epidemiología , Edad Materna , Atención Prenatal , Consejo , FamiliaRESUMEN
BACKGROUND: We examined adverse birth outcomes among adolescent and young adult women diagnosed with cancer (AYA women, ages 15-39 years) during pregnancy. METHODS: We linked data from the Texas Cancer Registry, vital records, and Texas Birth Defects Registry to identify all singleton births to AYA women diagnosed during pregnancy from January 1999 to December 2016. We compared prevalence of adverse live birth outcomes between AYA women and women without cancer (matched 1:4 on age, race and ethnicity, and year). Among AYA women, we used log-binomial regression to identify factors associated with these outcomes. Statistical tests were 2-sided. RESULTS: AYA women had 1271 singleton live births and 20 stillbirths. AYA women (n = 1291) were 33.3% Hispanic and 9.8% non-Hispanic Black and most commonly had breast (22.5%), thyroid (19.8%), and gynecologic (13.3%) cancers. Among live births, AYA women had a higher prevalence of low birth weight offspring (30.1% vs 9.0%), very preterm (5.7% vs 1.2%), and preterm birth (25.1% vs 7.2%); cesarean delivery (44.3% vs 35.2%); and low Apgar score (2.7% vs 1.5%), compared with women without cancer (n = 5084) (all P < .05). Prevalence of any birth defect by age 12 months did not statistically differ (5.2% vs 4.7%; P = .48), but live births to AYA women more often had heart and circulatory system defects (2.2% vs 1.3%; P = .01). In adjusted models, cancer type and chemotherapy were associated with adverse live birth outcomes. CONCLUSIONS: AYA women diagnosed during pregnancy have higher prevalence of adverse birth outcomes and face difficult decisions in balancing treatment risks and benefits.
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Neoplasias , Nacimiento Prematuro , Embarazo , Recién Nacido , Femenino , Adolescente , Adulto Joven , Humanos , Lactante , Nacimiento Prematuro/epidemiología , Recién Nacido de Bajo Peso , Nacimiento Vivo/epidemiología , Neoplasias/epidemiología , Texas/epidemiologíaRESUMEN
Purpose: Adolescent and young adult cancer survivors (AYAs) experience early-onset chronic conditions and disrupted psychosocial development. We report prevalence of disruptions in care delivery and social support during the early wave of the pandemic in a national sample of AYAs in the United States. Materials and Methods: We used data from the population-based National Health Interview Survey (NHIS; July-December 2020), which allows for nationally representative estimates, and included questions related to COVID-19. We identified 61 AYAs diagnosed with cancer between ages 15 and 39 years and not currently receiving cancer treatment and 244 age- and sex-matched controls. We compared the proportion of AYAs and controls reporting delayed care due to the pandemic, not getting needed care due to the pandemic, and changes in social and emotional support. Results: AYAs were predominantly non-Hispanic White (61.3%) and female (58.8%), with a median age at diagnosis of 28 years (interquartile range [IQR] 21-31 years). Fewer AYAs were employed (52.1% vs. 71.5%), and more lived in poverty (32.0% vs. 12.4%) and felt depressed daily (9.9% vs. 3.0%, all p < 0.05). The proportion of AYAs reporting delayed care (39.8% vs. 15.3%) and not getting needed care (31.7% vs. 10.4%) due to the pandemic was more than double that of controls (both p < 0.01). One in five AYAs experienced less social and emotional support compared to the prior year, although not significantly different from controls (21.6% vs. 12.4%, p = 0.10). Conclusions: The pandemic disrupted AYAs' care and exacerbated their psychosocial challenges. Providers and health systems should prioritize reconnecting AYAs to affordable and comprehensive care.
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COVID-19 , Supervivientes de Cáncer , Neoplasias , Humanos , Adolescente , Adulto Joven , Femenino , Estados Unidos/epidemiología , Adulto , Supervivientes de Cáncer/psicología , Pandemias , COVID-19/epidemiología , Neoplasias/epidemiología , Neoplasias/terapia , Neoplasias/psicología , EmocionesRESUMEN
PURPOSE: We examined the association between polypharmacy-an established risk factor for nonadherence in the elderly-and medication fill nonadherence in a large national sample of adolescent and young adult cancer survivors (AYAs) in the USA. METHODS: We pooled data (2008-2017) from the Medical Expenditure Panel Survey. We defined polypharmacy as ≥ 3 unique medications prescribed, based on self-report and pharmacy data, and medication fill nonadherence as self-reported delay or inability to obtain a necessary medication. We estimated prevalence of medication fill nonadherence among AYAs (age 18-39 years with a cancer history). We used logistic regression to estimate the association between (1) polypharmacy and medication fill nonadherence in AYAs, and (2) total number of medications prescribed and medication fill nonadherence, controlling for sex, number of chronic conditions, disability, and survey year. RESULTS: AYAs (n = 598) were predominantly female (76.2%), age 30-39 years (64.9%), and non-Hispanic White (72.1%). Nearly half were poor (19.0%) or near-poor/low income (21.6%). One in ten AYAs reported medication fill nonadherence (9.75%). Of these, more than 70% cited cost-related barriers as the reason. AYAs with polypharmacy had 2.49 times higher odds of medication fill nonadherence (95%CI 1.11-5.59), compared to those without polypharmacy. Odds of medication fill nonadherence increased by 16% with each additional medication prescribed (AOR 1.16, 95% CI 1.07-1.25). CONCLUSIONS: Polypharmacy may be an important risk factor for medication fill nonadherence in AYAs in the USA. IMPLICATIONS FOR CANCER SURVIVORS: Improving AYAs' medication adherence requires eliminating cost-related barriers, particularly for those with polypharmacy.
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Supervivientes de Cáncer , Neoplasias , Humanos , Femenino , Adulto Joven , Adolescente , Anciano , Adulto , Masculino , Polifarmacia , Encuestas y Cuestionarios , Autoinforme , Cumplimiento de la Medicación , Neoplasias/tratamiento farmacológicoRESUMEN
PURPOSE: We examined prescription medication use and identified correlates of polypharmacy-taking multiple medications-in adolescent and young adult cancer survivors (AYAs), who experience early-onset chronic conditions. METHODS: Our cross-sectional study pooled data (2008-2017) from the national Medical Expenditure Panel Survey. We estimated prevalence of polypharmacy (≥ 5 unique prescription medications over an approximate 1-year period) in AYAs (age 18-39 years with a history of cancer) and age- and sex-matched controls, overall and by sociodemographics, clinical factors, and health indicators. We compared survivors' and controls' medication use across therapeutic classes. To identify correlates of polypharmacy among AYAs, we included factors with p < 0.20 in bivariable analysis in a multivariable logistic regression model. RESULTS: AYAs (n = 601) had a higher prevalence of polypharmacy than controls (n = 2,402), overall (31.5% vs. 15.9%, p < .01) and by all sociodemographics, clinical factors, and health indicators. A majority of AYAs with multiple chronic conditions (58.8%, 95% CI 47.3-70.4) or disability (61.3%, 95% CI 52.6-70.0) had polypharmacy. Patterns of AYAs' medication use across therapeutic classes were consistent with their chronic conditions. Nearly one-third used opioid/narcotic analgesics (32.2% vs. 13.7% of controls, p < 0.01). Among AYAs, multiple chronic conditions (aOR 4.68, 95% CI 2.23-9.83) and disability (aOR 3.70, 95% CI 2.23-6.14) were correlated with polypharmacy. CONCLUSIONS: Chronic conditions and disabilities, including aftereffects of cancer treatment, may drive polypharmacy in AYAs. Future research should examine adverse outcomes of polypharmacy and opioid/narcotic use in AYAs. IMPLICATIONS FOR CANCER SURVIVORS: AYAs with chronic conditions or disabilities should be monitored for polypharmacy.
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Supervivientes de Cáncer , Afecciones Crónicas Múltiples , Neoplasias , Humanos , Adulto Joven , Adolescente , Adulto , Polifarmacia , Afecciones Crónicas Múltiples/tratamiento farmacológico , Estudios Transversales , Analgésicos Opioides/uso terapéutico , Prescripciones , Enfermedad Crónica , Neoplasias/tratamiento farmacológico , Neoplasias/epidemiologíaRESUMEN
BACKGROUND: Gonadotoxic effects of cancer treatment may increase risk of adverse birth outcomes in adolescent and young adult (AYA, aged 15-39 years) women diagnosed with cancer. We estimated risk of stillbirth (fetal death of gestational age ≥20 weeks or weighing ≥350 grams) in a population-based sample of AYA women. METHODS: AYA women diagnosed with cancer between January 1, 1995, and December 31, 2015, were identified using the Texas Cancer Registry and linked to live birth and fetal death certificates through December 31, 2016. Among AYA women, cumulative incidence of stillbirth was estimated by gestational age, and Poisson regression models identified factors associated with stillbirth. Standardized fetal mortality ratios (SMR) compared the observed fetal mortality rate in AYA women with the expected fetal mortality rate in the general population. RESULTS: A total of 11â628 live births and 68 stillbirths occurred to 8402 AYA women after diagnosis. Cumulative incidence of stillbirth in AYA women was 0.70% (95% confidence interval [CI] = 0.51% to 0.96%) at 40 weeks of gestation. Risk of stillbirth was higher among Hispanic (risk ratio [RR] = 2.64, 95% CI = 1.29 to 5.41) and non-Hispanic Black (RR = 4.13, 95% CI = 1.68 to 10.16) women compared with non-Hispanic White women; there was no association with receipt of chemotherapy or time since diagnosis. Age- and race and ethnicity-adjusted fetal mortality rate in AYA women was similar to the general population (SMR = 0.99, 95% CI = 0.77 to 1.26). CONCLUSIONS: AYA women may be counseled that overall risk of stillbirth is low, and for most, cancer does not appear to confer additional risk.
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Neoplasias , Complicaciones del Embarazo , Embarazo , Adulto Joven , Adolescente , Humanos , Femenino , Mortinato/epidemiología , Etnicidad , Neoplasias/epidemiología , IncidenciaRESUMEN
Women living with HIV (WLWH) are at increased risk of anal cancer compared to women without HIV, often due to persistent human papillomavirus (HPV) infections. This paper describes current practices and challenges conducting anal cancer screening for WLWH at an urban integrated safety-net system and a non-profit community-based HIV clinic. We conducted 25 semi-structured interviews with clinical and administrative stakeholders to assess knowledge, clinic practices and procedures, and experiences with anal cancer screening. Interview transcripts and fieldnotes were thematically analyzed using an iterative deductive and inductive coding scheme. Findings were organized by the Consolidated Framework for Implementation Research (CFIR) domains and constructs. Provider-level barriers to conducting anal cancer screening included limited knowledge of guidelines. System-level barriers included: structural characteristics such as lack of coordination between clinics to discern provider roles and responsibilities; and limitations in available resources such as configuration of electronic health records and infrastructure to manage referrals of abnormal anal Pap results. We conclude that anal cancer screening and follow-up for WLWH requires organization and coordination between multiple care teams, updated clinical information systems to facilitate communication and support anal Pap ordering and result documentation, and infrastructure that includes policies and protocols for management of abnormal results.Trial registration: ClinicalTrials.gov identifier: NCT02135419.
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Neoplasias del Ano , Infecciones por VIH , Neoplasias del Ano/diagnóstico , Detección Precoz del Cáncer/métodos , Femenino , Infecciones por VIH/diagnóstico , Humanos , Tamizaje Masivo/métodosRESUMEN
Background: Individuals living with spinal cord injury (SCI) have a high prevalence of obesity and unique barriers to healthy lifestyle. Objective: To examine barriers and facilitators to engagement and weight loss among SCI participants enrolled in the Group Lifestyle Balance Adapted for individuals with Impaired Mobility (GLB-AIM), a 12-month intensive lifestyle intervention. Methods: SCI participants (N = 31) enrolled in a wait-list, randomized controlled trial where all participants received intervention between August 2015 and February 2017. Analyses of pooled data occurred in 2020 to examine cross-sectional and prospective associations of hypothesized barriers and facilitators with (1) intervention engagement, comprised of attendance and self-monitoring, and (2) percent weight change from baseline to 12 months. We performed multivariable linear regression on variables associated with outcomes at p < .05 in bivariate analyses and controlled for intervention group. Results: Participants were middle-aged (mean age, 48.26 ± 11.01 years), equally male (50%) and female, White (80.7%), and unemployed (65.6%). In participants who completed baseline surveys (n = 30), dietary self-efficacy explained 26% of variance in engagement (p < .01); among the 12-month study completers (n = 22, 71.0%), relationship issues explained 23% of variance in engagement (p < .01). Money problems, health issues unrelated to SCI, lack of motivation, and experimental group explained 57% of variance in weight loss (p for model < .01), with lack of motivation uniquely explaining 24% of variance (p < .01). Conclusion: Improving engagement and weight loss for persons with SCI in the GLBAIM program may be achieved by addressing lack of motivation, relationship issues, and nutrition self-efficacy.
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Promoción de la Salud/métodos , Estilo de Vida Saludable , Obesidad/complicaciones , Obesidad/terapia , Participación del Paciente , Traumatismos de la Médula Espinal/complicaciones , Pérdida de Peso , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , AutoeficaciaRESUMEN
OBJECTIVES: The aims of the study were (1) to describe anal cancer knowledge, perceived risk, screening barriers, and acceptability of sample self-collection among women living with HIV (WLWH) at an integrated safety-net system and (2) to describe differences in demographic and psychosocial variables among a subsample of WLWH with a history of abnormal cervical cytology results versus those with normal results. MATERIALS AND METHODS: We conducted telephone surveys with English- and Spanish-speaking WLWH (N = 99) and used electronic health record data to extract insurance type, CD4+ cell count, RNA viral load, and cervical cytology results. We calculated descriptive statistics for participant demographics, HIV laboratory results, and psychosocial variables. Among the subsample of women who completed a recent cervical Pap, we used Fisher exact test to assess differences in demographic variables, CD4+ counts, RNA viral loads, knowledge, awareness, acceptability, and perceived risk by cervical cytology results. RESULTS: Most participants (70%) reported knowing nothing about anal cancer; 28% correctly responded that HIV increases one's chance of getting anal cancer. Most (68%) never heard of an anal Pap test. Forty percent would get an anal Pap if they could self-collect the sample, whereas 59% were neutral or disagreed. The 2 most commonly cited barriers to obtaining an anal Pap were "I do not know enough about it" (n = 15) and "It might hurt" (n = 9). CONCLUSIONS: This study highlights a gap in knowledge and awareness among WLWH regarding their heightened risk for anal cancer. It indicates the need for health education and suggests an opportunity for a self-collection intervention.
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Neoplasias del Ano/diagnóstico , Neoplasias del Ano/psicología , Detección Precoz del Cáncer/psicología , Infecciones por VIH/psicología , Conocimientos, Actitudes y Práctica en Salud , Adolescente , Adulto , Detección Precoz del Cáncer/métodos , Femenino , Humanos , Persona de Mediana Edad , Prueba de Papanicolaou/psicología , Factores de Riesgo , Texas , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/psicología , Adulto JovenRESUMEN
INTRODUCTION: This study examines the feasibility and effectiveness of an intensive lifestyle intervention adapted for people with impaired mobility. STUDY DESIGN: This was a randomized, wait-list controlled trial. The experimental group immediately received the 12-month weight loss program; the wait-list control group received it after a 6-month delay. Between-group comparisons were conducted for the 6-month RCT study design. Repeated measures were conducted for both groups combined after receiving the 12-month intervention. Data were collected August 2015-February 2017 and analyzed in 2017. SETTING/PARTICIPANTS: A community-based sample received 23, group-based sessions via a mix of telephone and in-person sessions in a hospital-based setting. Participants with impaired mobility (n=66) were middle-aged (49.80 [SD=11.37] years), mostly White (66.7%), female (66.7%), and most commonly had spinal cord injury (47.0%). INTERVENTION: The 12-month intervention delivered 23 group-based sessions that promoted weight loss through reducing caloric intake and increasing physical activity. MAIN OUTCOME MEASURES: Primary outcomes were effectiveness measured as change in weight and time spent in moderate physical activity. Feasibility was assessed in 12-month combined group analyses, measured as retention, attendance, and dietary self-monitoring. RESULTS: The 6-month RCT results showed that the immediate and delayed groups differed significantly (p<0.05) in weight (-1.66 [SD=4.42] kg loss vs 0.05 [SD=4.15] kg gain) and moderate physical activity (52.93 [SD=90.74] minutes/week increase vs -14.22 [SD=96.02] minutes/week decrease), accounting for baseline weight, time with disability, and age of onset. The 12-month results with groups combined demonstrated 74.2% retention and 77.7% core session attendance. Self-monitoring was higher in the delayed group (77.3%), who used a smartphone app, than the immediate group (47.3%), who mostly used paper trackers. Participants achieved significant 12-month weight loss of 3.31 (SD=10.13) kg (d=0.33) in mixed modeling analyses with groups combined yet did not significantly increase moderate physical activity. CONCLUSIONS: Group Lifestyle Balance Adapted for Individuals with Impaired Mobility is a feasible, effective approach to teach healthy lifestyle skills to individuals with mobility impairment, yielding modest weight loss and enhanced self-efficacy. TRIAL REGISTRATION: This study is registered at www.clinicaltrials.gov NCT03307187.
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Pérdida de Peso , Programas de Reducción de Peso , Peso Corporal , Femenino , Estilo de Vida Saludable , Humanos , Estilo de Vida , Persona de Mediana EdadRESUMEN
BACKGROUND: Little is known about population-level sexually transmitted disease (STD) testing in emergency departments (EDs). We sought to explore STD testing patterns in EDs in a large, urban metroplex in North Texas, a high prevalence region. METHODS: Emergency department claims data were extracted from the Dallas Fort Worth Hospital Council databank for patients attending 54 EDs in 4 counties (Dallas, Tarrant, Collin, and Denton) who were tested for an STD during an ED visit between July 2014 and June 2015. We analyzed patterns of testing for 3 types of STD tests: (1) combined gonorrhea and chlamydia DNA-based tests, (2) human immunodeficiency virus (HIV) antibody tests, and (3) syphilis serological tests. RESULTS: Emergency departments administered at least 1 STD test to 65,702 unique patients over 1 year; most were ethnoracial minorities (73%), female (72%), and had no known insurance (59%). Only 8% of patients received more than 1 of these tests at that same visit; of those, 90% were cotested for HIV. The most common diagnosis code associated with STD testing was "genital/urinary symptoms" (31%). The majority of tests took place at the ED of a single county-funded hospital (42%). Only 36% of all patients had visits that were deemed true emergencies. CONCLUSIONS: Most patients tested for syphilis, HIV, or chlamydia/gonorrhea in EDs received only 1 test type at that visit, and most visits were nonemergent in nature. Given shared risk factors for multiple STD and high coinfection rates, EDs serving high-risk populations could consider STD cotesting to help reduce transmission of undiagnosed, untreated infections.
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Infecciones por Chlamydia/diagnóstico , Gonorrea/diagnóstico , Infecciones por VIH/diagnóstico , Enfermedades de Transmisión Sexual/diagnóstico , Sífilis/diagnóstico , Adolescente , Adulto , Anciano , Niño , Preescolar , Infecciones por Chlamydia/epidemiología , Servicio de Urgencia en Hospital , Femenino , Gonorrea/epidemiología , Infecciones por VIH/epidemiología , Humanos , Lactante , Masculino , Persona de Mediana Edad , Prevalencia , Factores de Riesgo , Enfermedades de Transmisión Sexual/epidemiología , Sífilis/epidemiología , Serodiagnóstico de la Sífilis , Texas/epidemiología , Salud Urbana , Adulto JovenRESUMEN
OBJECTIVE: We explored patient perspectives after a positive human papillomavirus (HPV) self-sampling result to describe experiences and information needs for this home-based screening modality. MATERIALS AND METHODS: We recruited women who tested high-risk (hr) HPV positive during a pragmatic trial evaluating mailed hrHPV self-sampling kits as an outreach strategy for women overdue for Pap screening in a U.S. integrated health care system. Telephone interviews were conducted from 2014 to 2017. Five independent coders analyzed transcripts using iterative content analysis. RESULTS: Forty-six women (61% of invited; median age 55.5 years) completed a semistructured interview. Six themes emerged: (1) convenience of home-based screening, (2) intense feelings and emotions after receiving positive kit results, (3) importance of seeing provider and discussing kit results, (4) information seeking from various sources, (5) confusion about purpose and meaning of HPV versus Pap tests, and (6) concern that HPV self-sampling is inaccurate when the subsequent Pap test is normal. CONCLUSIONS: Although women liked the kit's convenience, discussion about discordant home HPV and in-clinic Pap results led them to question the accuracy of HPV self-sampling. Patient-provider communication around home HPV kits is more complex than for reflex or cotesting because clinician-collected Pap results are unknown at the time of the positive kit result. Patients need education about differences between HPV and Pap tests and how they are used for screening and follow-up. To reassure patients and keep them interested in self-sampling, education should be provided at multiple time points during the screening process.
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Conocimientos, Actitudes y Práctica en Salud , Prueba de Papanicolaou/métodos , Infecciones por Papillomavirus/diagnóstico , Autoexamen , Neoplasias del Cuello Uterino/diagnóstico , Adulto , Detección Precoz del Cáncer/métodos , Femenino , Humanos , Tamizaje Masivo/métodos , Persona de Mediana Edad , Papillomaviridae/aislamiento & purificación , Educación del Paciente como Asunto/métodosRESUMEN
BACKGROUND: The high prevalence of cervical cancer at safety-net health systems requires careful analysis to best inform prevention and quality improvement efforts. We characterized cervical cancer burden and identified opportunities for prevention in a U.S. safety-net system. METHODS: We reviewed tumor registry and electronic health record (EHR) data of women with invasive cervical cancer with ages 18+, diagnosed between 2010 and 2015, in a large, integrated urban safety-net. We developed an algorithm to: (i) classify whether women had been engaged in care (≥1 clinical encounter between 6 months and 5 years before cancer diagnosis); and (ii) identify missed opportunities (no screening, no follow-up, failure of a test to detect cancer, and treatment failure) and associated factors among engaged patients. RESULTS: Of 419 women with cervical cancer, more than half (58%) were stage 2B or higher at diagnosis and 40% were uninsured. Most (69%) had no prior healthcare system contact; 47% were diagnosed elsewhere. Among 122 engaged in care prior to diagnosis, failure to screen was most common (63%), followed by lack of follow-up (21%), and failure of test to detect cancer (16%). Tumor stage, patient characteristics, and healthcare utilization differed across groups. CONCLUSIONS: Safety-net healthcare systems face a high cervical cancer burden, mainly from women with no prior contact with the system. To prevent or detect cancer early, community-based efforts should encourage uninsured women to use safety-nets for primary care and preventive services. IMPACT: Among engaged patients, strategies to increase screening and follow-up of abnormal screening tests could prevent over 80% of cervical cancer cases.
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Atención a la Salud/normas , Proveedores de Redes de Seguridad/normas , Neoplasias del Cuello Uterino/prevención & control , Adulto , Anciano , Anciano de 80 o más Años , Detección Precoz del Cáncer , Femenino , Humanos , Persona de Mediana Edad , Neoplasias del Cuello Uterino/patología , Adulto JovenRESUMEN
BACKGROUND: "I don't know" (DK) responses are common in health behavior research. Yet analytic approaches to managing DK responses may undermine survey validity and researchers' ability to interpret findings. OBJECTIVE: Compare the usefulness of a methodological strategy for reducing DK responses to 3 analytic approaches: 1) excluding DKs as missing data, 2) recoding them to the neutral point of the response scale, and 3) recoding DKs with the mean. METHODS: We used a 4-group design to compare a methodological strategy, which encourages use of the response scale after an initial DK response, to 3 methods of analytically treating DK responses. We examined 1) whether this methodological strategy reduced the frequency of DK responses, and 2) how the methodological strategy compared to common analytic treatments in terms of factor structure and strength of correlations between measures of constructs. RESULTS: The prompt reduced DK response frequency (55.7% of 164 unprompted participants vs. 19.6% of 102 prompted participants). Factorial invariance analyses suggested equivalence in factor loadings for all constructs throughout the groups. Compared to excluding DKs, recoding strategies and use of the prompt improved the strength of correlations between constructs, with the prompt resulting in the strongest correlations (.589 for benefits and intentions, .446 for perceived susceptibility and intentions, and .329 for benefits and perceived susceptibility). LIMITATIONS: This study was not designed a priori to test methods for addressing DK responses. Our analysis was limited to an interviewer-administered survey, and interviewers did not probe about reasons for DK responses. CONCLUSION: Findings suggest that use of a prompt to reduce DK responses is preferable to analytic approaches to treating DK responses. Use of such prompts may improve the validity of health behavior survey research.