RESUMO
We compared serum anti-Mullerian hormone (AMH) levels in women with sickle cell disease (SCD) (n = 152) to those of Black comparison women (n = 128) between the ages of 20 and 45 years and evaluated the impact of hydroxyurea (HU) and iron overload on ovarian reserve in those with SCD. SCD treatment was abstracted from medical records. Linear regression models were fit to examine the relationship between log(AMH) and SCD, adjusting for age. The analysis was repeated to account for HU use (current, previous, never) and iron overload (ferritin ≥1000 ng/mL vs. <1000 ng/mL). AMH estimates among women with SCD were lower than those among comparison women (2.23, 95% confidence interval [CI] 1.80-2.76 vs. 4.12, 95% CI 3.11-5.45, respectively). Women with SCD who were currently using HU had 63% lower (95% CI 43-76) AMH values than comparison women; those with SCD with prior or no HU use also had lower AMH estimates than comparison women, but the difference was less pronounced. There were no differences in predicted AMH values among women with SCD for those with and without iron overload. Women with SCD and low AMH may have a shorter reproductive window and may benefit from referral to a reproductive specialist.
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Anemia Falciforme , Hormônio Antimülleriano , Hidroxiureia , Reserva Ovariana , Humanos , Feminino , Anemia Falciforme/tratamento farmacológico , Anemia Falciforme/sangue , Anemia Falciforme/complicações , Adulto , Hormônio Antimülleriano/sangue , Hidroxiureia/uso terapêutico , Pessoa de Meia-Idade , Sobrecarga de Ferro/etiologia , Sobrecarga de Ferro/tratamento farmacológico , Sobrecarga de Ferro/sangue , Adulto Jovem , Negro ou Afro-AmericanoRESUMO
BACKGROUND: 5-year survival after childhood cancer does not fully describe life-years lost due to childhood cancer because there are a large number of deaths occurring beyond 5-years (late mortality) related to cancer and cancer treatment. Specific causes of health-related (non-recurrence, non-external) late mortality and risk reduction through modifiable lifestyle and cardiovascular risk factors are not well described. Through using a well-characterised cohort of 5-year survivors of the most common childhood cancers, we evaluated specific health-related causes of late mortality and excess deaths compared with the general US population and identified targets to reduce future risk. METHODS: In this multi-institutional, hospital-based, retrospective cohort study, late mortality (death ≥5 years from diagnosis) and specific causes of death were evaluated in 34 230 5-year survivors of childhood cancer diagnosed at an age younger than 21 years from 1970 to 1999 at 31 institutions in the USA and Canada; median follow-up from diagnosis was 29 years (range 5-48) in the Childhood Cancer Survivor Study. Demographic, self-reported modifiable lifestyle (ie, smoking, alcohol, physical activity, and BMI) and cardiovascular risk factors (ie, hypertension, diabetes, and dyslipidaemia) associated with health-related mortality (which excludes death from primary cancer and external causes and includes death from late effects of cancer therapy) were evaluated. FINDINGS: 40-year cumulative all-cause mortality was 23·3% (95% CI 22·7-24·0), with 3061 (51·2%) of 5916 deaths from health-related causes. Survivors 40 years or more from diagnosis experienced 131 excess health-related deaths per 10 000 person-years (95% CI 111-163), including those due to the top three causes of health-related death in the general population: cancer (absolute excess risk per 10 000 person-years 54, 95% CI 41-68), heart disease (27, 18-38), and cerebrovascular disease (10, 5-17). Healthy lifestyle and absence of hypertension and diabetes were each associated with a 20-30% reduction in health-related mortality independent of other factors (all p values ≤0·002). INTERPRETATION: Survivors of childhood cancer are at excess risk of late mortality even 40 years from diagnosis, due to many of the leading causes of death in the US population. Modifiable lifestyle and cardiovascular risk factors associated with reduced risk for late mortality should be part of future interventions. FUNDING: US National Cancer Institute and the American Lebanese Syrian Associated Charities.
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Sobreviventes de Câncer , Hipertensão , Neoplasias , Humanos , Criança , Adulto Jovem , Adulto , Estudos Retrospectivos , Fatores de Risco , SobreviventesRESUMO
BACKGROUND: Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics. METHODS: This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care. RESULTS: A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P < .001), less time had elapsed since their diagnosis (P < .001), or they reported a higher number of motivating factors (P = .016). CONCLUSION: Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care.
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Neoplasias Encefálicas , Sobreviventes de Câncer , Neoplasias , Humanos , Masculino , Criança , Adulto Jovem , Adulto , Feminino , Sobrevivência , Qualidade de Vida , Motivação , Estudos Transversais , Neoplasias/epidemiologia , Neoplasias/terapia , Austrália/epidemiologia , Progressão da DoençaRESUMO
BACKGROUND: Substance use can exacerbate cancer-related morbidity and mortality in adolescent/young adult (AYA) cancer survivors and place them at increased risk for adverse health outcomes. The objective of this study was to assess substance use, misuse, and substance use disorders [SUDs], as well as receipt of treatment for SUDs, among AYA cancer survivors. METHODS: The authors used data from the National Survey of Drug Use and Health (2015-2018) to identify a nationally representative sample of AYAs aged 12 to 34 years. Outcomes assessed past-year tobacco, alcohol, marijuana, and illicit drug use; misuse of prescription opioids; SUDs; and SUD treatment. Multiple logistic regression was estimated to compare outcomes between 832 AYAs who reported a cancer history (survivors) and 140,826 AYAs who did not, adjusting sequentially for sociodemographic characteristics and health status. RESULTS: In regressions adjusting for sociodemographic characteristics, survivors were more likely than a noncancer comparison group of peers to use alcohol (6% relative increase; P = .048) and illicit drugs (34% relative increase; P = .012), to misuse prescription opioids (59% relative increase; P < .001), and to have a marijuana (67% relative increase; P = .011), illicit drug (77% relative increase; P < .001), or prescription opioid (67% relative increase; P = .048) SUD. When further adjusting for health status, survivors were still 41% more likely (P < .001) to misuse prescription opioids than noncancer peers. Among those with SUDs, survivors were more likely than peers to receive treatment (unadjusted, 21.5% vs 8.0%; adjusted, P < .05). CONCLUSIONS: AYA survivors were as likely as or more likely than noncancer peers to report substance use problems. These findings underscore the importance of interventions to reduce substance use and improve SUD treatment among AYA cancer survivors. LAY SUMMARY: The authors assessed substance use, misuse, and substance use disorders, as well as the receipt of treatment for substance use disorders, among adolescent and young adult (AYA) cancer survivors. In a nationally representative AYA sample, cancer survivors, despite their increased risk for morbidity and early mortality, were as likely as or more likely than peers without cancer to experience substance use problems. In particular, survivors had a significantly higher rate of prescription opioid misuse than peers. However, only 1 in 5 AYA survivors who experienced substance use disorders received treatment. These findings underscore the importance of interventions toward reducing substance use and improving access to treatment among AYA survivors.
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Sobreviventes de Câncer , Neoplasias , Transtornos Relacionados ao Uso de Opioides , Uso Indevido de Medicamentos sob Prescrição , Transtornos Relacionados ao Uso de Substâncias , Adolescente , Adulto , Analgésicos Opioides/uso terapêutico , Criança , Humanos , Neoplasias/induzido quimicamente , Neoplasias/epidemiologia , Neoplasias/terapia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Sobreviventes , Uso de Tabaco , Estados Unidos/epidemiologia , Adulto JovemRESUMO
BACKGROUND: Cancer survivors are at elevated risk for developing mental health (MH) disorders. This study assessed MH service use and unmet service needs among a nationally representative sample of cancer survivors. METHODS: Respondents aged 18 to 64 years were identified from the 2015-2018 National Survey of Drug Use and Health data. Outcomes assessed past-year MH service use and self-reported unmet MH needs. Outcomes were compared between respondents who reported a cancer history (survivors) and those who did not (controls), descriptively and in adjusted analyses controlling for sociodemographic factors and health status. Analyses were stratified by age groups (18-34, 35-49, and 50-64 years). RESULTS: Comparing 3540 survivors with 149,843 controls, within each age group, a higher proportion of survivors than controls received any MH service (P values < .05); this difference persisted among those aged 35 to 49 years (P = .004) in fully adjusted models. Moreover, a higher proportion of survivors than controls reported an unmet need for MH care; this difference was larger among young adults aged 18 to 34 years (20.8% vs 9.0%; P < .001) than those aged 35 to 49 years (9.4% vs 5.3%; P < .001) and 50 to 64 years (4.8% vs 3.4%; P = .029). In fully adjusted models, the survivor-control difference in self-reported unmet MH needs persisted among young adults (24% relative increase; P = .023). Among cancer survivors, young adult survivors had the highest likelihood of reporting unmet MH needs. CONCLUSIONS: This nationally representative study found an increased perception of unmet needs for MH care among cancer survivors, particularly among young adult survivors, compared with the general population without cancer.
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Sobreviventes de Câncer , Serviços de Saúde Mental , Neoplasias , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Necessidades e Demandas de Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/psicologia , Neoplasias/terapia , Inquéritos e Questionários , Sobreviventes/psicologia , Adulto JovemRESUMO
OBJECTIVE: To demonstrate how formative research methods can be used to plan for implementation of evidence-based psychosocial screening in pediatric oncology. METHODS: Multidisciplinary pediatric oncology professionals participated in focus groups to adapt the distress thermometer for electronic administration and develop health systems processes to promote psychosocial screening in the pediatric oncology outpatient clinic setting. Seven 1-hour focus groups were conducted using a structured guide based on the reach, efficacy, adoption, implementation, and maintenance framework and transcribed verbatim. Two independent raters coded transcripts using a quasi-deductive approach with high inter-coder reliability (Cohen kappa >0.80). RESULTS: Participants' (N = 44) responses were used to identify overarching topics related to the adoption, implementation, and maintenance of electronic screening (e-screening) including: barriers to meeting families' psychosocial needs, identification of champions, suggestions to adapt the proposed e-screening program, perceived barriers to e-screening, and potential impact of carrying out e-screening. Following review of qualitative data, we employed specific implementation strategies to promote adoption, implementation, and maintenance of an e-screening program. CONCLUSIONS: Perceived barriers to the implementation of psychosocial screening remain substantial, yet enthusiasm for using electronic health records (EHRs) technology to help meet patient needs through regular assessment was evident among pediatric oncology professionals. Electronic administration of screening and integration of results into the EHR in real time were identified as critical needs to overcome barriers to e-screening. Formative research including qualitative data from stakeholders can be used to tailor implementation strategies to successfully support the adoption, implementation, and maintenance of e-screening programs in pediatric oncology.
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Registros Eletrônicos de Saúde , Prática Clínica Baseada em Evidências/organização & administração , Programas de Rastreamento/métodos , Neoplasias/psicologia , Adolescente , Adulto , Criança , Feminino , Grupos Focais , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Neoplasias/terapia , PediatriaRESUMO
Features associated with malnutrition are poorly elucidated in pediatric cancer care. We aimed to better understand characteristics associated with weight-for-height (WHZ) and height-for-age (HAZ) changes for infants and young children during cancer treatment. This retrospective study included 434 patients diagnosed <3 years old from 2007 to 2015 at a large pediatric cancer center. Patients starting treatment outside our center, those with relapsed or secondary malignancies, or with inaccurate information were excluded. Abstracted weights and heights for a 24-month period after treatment initiation were converted to sex-specific and age-specific z scores. Although not statistically different at baseline, patients with hematologic malignancies gained weight over time, while other tumor types did not. Higher treatment intensity and younger age at diagnosis increased odds of clinically significant weight loss. Older children had higher HAZ at diagnosis and HAZ also significantly decreased over time for all examined risk factors, which is distinctly different from patterns in WHZ over time. In conclusion, WHZ and HAZ are affected differently by cancer treatment in infants and young children. We identify key risk factors for weight loss and growth stunting which will be necessary to develop prospective trials to examine anthropometric, biochemical, and patient recorded outcomes around nutrition.
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Estatura , Transtornos do Crescimento/patologia , Desnutrição/patologia , Neoplasias/complicações , Estado Nutricional , Redução de Peso , Pré-Escolar , Terapia Combinada , Feminino , Seguimentos , Transtornos do Crescimento/etiologia , Humanos , Lactente , Masculino , Desnutrição/etiologia , Neoplasias/patologia , Neoplasias/terapia , Prognóstico , Estudos RetrospectivosRESUMO
BACKGROUND: This study assessed mental health (MH) outcomes across age groups in a nationally representative US sample of adult cancer survivors. METHODS: The 2015 to 2017 National Survey on Drug Use and Health was used to identify respondents aged 18 to 64 years. The authors compared MH outcomes between respondents with a cancer history and respondents without a cancer history in adjusted analyses controlling for demographics and socioeconomic status. Outcomes included past-year major depressive episodes, serious psychological distress, suicidal thoughts, suicidal plans, suicidal attempts, any mental illness, and serious mental illness. All analyses were stratified by age group (18-34, 35-49, or 50-64 years). RESULTS: In a comparison of 2656 survivors and 112,952 individuals without cancer, within each age group, survivors had an elevated prevalence of MH problems in 5 of the 7 outcome measures. Among young adults (aged 18-34 years), survivors were more likely than noncancer counterparts to experience major depressive episodes (18.1% vs 9.6%), serious psychological distress (34.2% vs 17.9%), suicidal thoughts (10.5% vs 7.0%), any mental illness (41.1% vs 23.3%), and serious mental illness (13.2% vs 5.9%) in the past year (P values <.05). These differences persisted in adjusted analyses (P values <.01). Similar survivor-comparison differences were observed among older groups but with a smaller magnitude. Among survivors, young adult survivors had the highest likelihood of experiencing MH problems across all outcomes (P values <.05). CONCLUSIONS: This population-based study shows an elevated prevalence of MH problems among adult cancer survivors in comparison with the general population. This finding highlights the importance of developing strategies to ensure the early detection of mental illness and to improve access to MH treatment for cancer survivors.
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Transtorno Depressivo Maior/epidemiologia , Saúde Mental , Neoplasias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Transtorno Depressivo Maior/patologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/fisiopatologia , Transtornos Relacionados ao Uso de Substâncias/patologia , Ideação Suicida , Adulto JovemRESUMO
BACKGROUND: Optimal risk-based survivor health care includes surveillance for late effects and education targeted at reducing or preventing risky health behaviors. Understanding the reasons for a lack of risk-based follow-up care is essential. METHODS: Adult participants from the Childhood Cancer Survivor Study were surveyed about having a cancer-related visit in the past 2 years and the likelihood of having a cancer-related visit in the future. Additional factors thought to be related to the primary outcomes were also assessed. RESULTS: Nine hundred seventy-five survivors completed the survey. Twenty-seven percent (95% confidence interval [CI], 24%-30%) had a cancer-related medical visit in the previous 2 years, and 41% (95% CI, 38%-44%) planned to have such a visit within the next 2 years. The likelihood of having had a cancer-related visit within the last 2 years was higher among survivors assigning greater importance to these visits (relative risk [RR], 1.2; 95% CI, 1.1-1.3), perceiving greater susceptibility to health problems (RR, 1.2; 95% CI, 1.1-1.3), having a moderate to life-threatening chronic health problem related to their cancer (RR, 2.1; 95% CI, 1.7-2.7), seeing a primary care provider for a cancer-related problem (RR, 1.3; 95% CI, 1.0-1.6), having a cancer treatment summary (RR, 1.3; 95% CI, 1.0-1.6), and endorsing greater confidence in physicians' abilities to address questions and concerns (RR, 1.2; 95% CI, 1.0-1.3). CONCLUSIONS: Educational interventions improving awareness of treatment history and susceptibility to cancer-related late effects and corresponding risk-based care are likely to be beneficial for survivors of childhood cancers.
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Sobreviventes de Câncer , Neoplasias/epidemiologia , Avaliação de Resultados em Cuidados de Saúde , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neoplasias/patologia , Risco , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. METHODS: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. CONCLUSIONS: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.
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Sobreviventes de Câncer , Registros Eletrônicos de Saúde , Registros de Saúde Pessoal , Criança , Grupos Focais , Pessoal de Saúde , Humanos , Disseminação de Informação , Internet , Avaliação das Necessidades , Neoplasias , Assistência Centrada no Paciente , Design de Software , Interface Usuário-Computador , Adulto JovemRESUMO
BACKGROUND: Among patients in whom childhood cancer was diagnosed in the 1970s and 1980s, 18% of those who survived for 5 years died within the subsequent 25 years. In recent decades, cancer treatments have been modified with the goal of reducing life-threatening late effects. METHODS: We evaluated late mortality among 34,033 patients in the Childhood Cancer Survivor Study cohort who survived at least 5 years after childhood cancer (i.e., cancer diagnosed before the age of 21 years) for which treatment was initiated during the period from 1970 through 1999. The median follow-up was 21 years (range, 5 to 38). We evaluated demographic and disease factors that were associated with death from health-related causes (i.e., conditions that exclude recurrence or progression of the original cancer and external causes but include the late effects of cancer therapy) using cumulative incidence and piecewise exponential models to estimate relative rates and 95% confidence intervals. RESULTS: Of the 3958 deaths that occurred during the study period, 1618 (41%) were attributable to health-related causes, including 746 deaths from subsequent neoplasms, 241 from cardiac causes, 137 from pulmonary causes, and 494 from other causes. A reduction in 15-year mortality was observed for death from any cause (from 12.4% in the early 1970s to 6.0% in the 1990s, P<0.001 for trend) and from health-related causes (from 3.5% to 2.1%, P<0.001 for trend). These reductions were attributable to decreases in the rates of death from subsequent neoplasm (P<0.001), cardiac causes (P<0.001), and pulmonary causes (P=0.04). Changes in therapy according to decade included reduced rates of cranial radiotherapy for acute lymphoblastic leukemia (85% in the 1970s, 51% in the 1980s, and 19% in the 1990s), of abdominal radiotherapy for Wilms' tumor (78%, 53%, and 43%, respectively), of chest radiotherapy for Hodgkin's lymphoma (87%, 79%, and 61%, respectively), and of anthracycline exposure. Reduction in treatment exposure was associated with reduced late mortality among survivors of acute lymphoblastic leukemia and Wilms' tumor. CONCLUSIONS: The strategy of lowering therapeutic exposure has contributed to an observed decline in late mortality among 5-year survivors of childhood cancer. (Funded by the National Cancer Institute and the American Lebanese-Syrian Associated Charities.).
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Neoplasias/mortalidade , Sobreviventes , Adolescente , Idade de Início , Astrocitoma/mortalidade , Criança , Pré-Escolar , Estudos de Coortes , Progressão da Doença , Feminino , Doença de Hodgkin/mortalidade , Humanos , Incidência , Lactente , Masculino , Mortalidade/tendências , Neoplasias/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/mortalidade , Recidiva , Estados Unidos/epidemiologia , Tumor de Wilms/mortalidadeRESUMO
BACKGROUND: During cancer treatment, children undergo potentially stressful hospitalizations and procedures. Animatronic devices are a promising means of distraction intervention. This study aimed to assess acceptability and feasibility of the My Special Aflac Duck® (MSAD) intervention among pediatric oncology patients and parents. We hypothesized that MSAD would be feasible to implement, have greater than 50% acceptance, and be useful distraction. PROCEDURES: This feasibility study enrolled oncology patients aged 3-11 years admitted to Children's Healthcare of Atlanta between May and August 2018. Patients were exposed to MSAD for 3 days and completed quantitative and qualitative assessments of acceptability. Patient and hospital data were abstracted. RESULTS: Seventeen (80.9%) of 21 eligible patients enrolled; 64.7% were <7 years, 47% were female, 52.9% had leukemia, 41.2% had solid tumors, and 5.9% had brain tumors. Patients had 1-12 previous admissions (mean 4.8, SD 3.1) and approximately 65% were planned hospitalizations. Approximately 69% reported MSAD helped reduce in-patient distress and 93.7% were satisfied with MSAD overall. Child satisfaction was high. There were no significant differences in acceptability or satisfaction with MSAD based on age, gender, number of inpatient procedures or previous hospitalizations, or hospitalization reason. Qualitative interviews revealed patients liked expressing feelings with tokens and thought MSAD was a fun distraction. CONCLUSIONS: MSAD implementation was feasible, and its acceptability was high among both patients and parents. MSAD shows potential as good distraction and an alternative means of communicating feelings. Future research should expand upon the effectiveness of MSAD on reducing distress.
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Desenhos Animados como Assunto , Patos , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Estresse Psicológico/prevenção & controle , Animais , Criança , Pré-Escolar , Estudos de Coortes , Terapia Combinada , Estudos de Viabilidade , Feminino , Seguimentos , Hospitalização , Humanos , Masculino , Neoplasias/terapia , PrognósticoRESUMO
BACKGROUND: Providers often rely on self-reported ovarian function in adolescent and young adult (AYA)-aged childhood cancer survivors when making clinical decisions. This study described reported menstrual patterns and the agreement between respondent-reported and biochemical premature ovarian insufficiency (POI) in this population. PROCEDURE: This was a cross-sectional study of survivors (or their parent proxy) aged 13-21.9 years who received gonadotoxic therapy and were enrolled in a longitudinal health survey. Participants reported menstrual regularity, hormone-replacement therapy (HRT) use, and ovarian dysfunction. Respondent-reported POI was defined as the survivor taking HRT for ovarian failure or having been told she had ovarian failure. Biochemical POI was defined as follicle-stimulating hormone (FSH) level ≥40 mIU/mL. The agreement between respondent-reported and biochemical POI was determined using Cohen's kappa coefficient (κ) and analyzed by demographic and clinical factors. RESULTS: Among 182 AYA-aged survivors (72.5% non-Hispanic White, 46.7% leukemia survivors), 14.8% reported requiring HRT to have menses but 55.5% reported regular menses without HRT use. Among survivors with FSH measurements (n = 130), 17.7% reported POI whereas 18.5% had FSH ≥40 mIU/mL (κ = 0.66, sensitivity 70.8%, specificity 94.3%). The highest agreement between respondent-reported and biochemical POI was with young adult self-report (κ = 0.78) and survivors with >5 survivor clinic (κ = 0.83) and/or >5 endocrinologist (κ = 1.00) visits. CONCLUSIONS: The majority of AYA-aged survivors reported having regular menses without HRT support. The accuracy of respondent-reported POI increased with repeated survivor clinic or endocrinologist visits, highlighting the importance of continued education. Survivors must be informed about their ovarian function to enable them to advocate for their reproductive health.
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Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/terapia , Pais , Medidas de Resultados Relatados pelo Paciente , Insuficiência Ovariana Primária/diagnóstico , Adolescente , Adulto , Terapia Combinada , Estudos Transversais , Feminino , Seguimentos , Georgia/epidemiologia , Humanos , Incidência , Neoplasias/patologia , Insuficiência Ovariana Primária/epidemiologia , Prognóstico , Procurador , Saúde Reprodutiva , Adulto JovemRESUMO
OBJECTIVE: This study aimed to examine the level and predictors of knowledge of late effects risks from childhood cancer treatment in adolescent and young adult (AYA) survivors. METHODS: Seventy-three AYAs, aged 14-21, completed measures of knowledge of late effect risks, executive functioning, and responsibility for health self-management. Sixty-seven parents of these AYA survivors (91.7%) also participated. RESULTS: Survivors demonstrated poor knowledge of their unique risks for treatment-related late effects, with a mean accurate knowledge score of 54.29% (SD = 24.19%). The number of late effects for which survivors were at risk was negatively correlated with risk knowledge (r = -.34, p < .01). Survivors' executive functioning was not related to risk knowledge. In regression analyses, survivor age positively predicted accurate knowledge of late effects risks, and the number of late effects risk was a negative predictor. In separate models, survivor self-report of AYA responsibility for health self-management did not predict knowledge (R2 = .39, F = 10.86, p < .01), but parent proxy-report was a significant positive predictor (R2 = .38, F = 9.62, p < .01). Parental involvement was not a significant predictor in either model. CONCLUSION: There are significant knowledge gaps among AYA survivors of childhood cancer, which appear to be related to younger AYA age and lower levels of AYA responsibility for health self-management. Additional intervention is critical to increase AYA knowledge of their risk for late effects in order to promote continued engagement in long-term follow-up care and surveillance across the lifespan.
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Sobreviventes de Câncer/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Autogestão/psicologia , Adolescente , Adulto , Fatores Etários , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Risco , Autorrelato , Autogestão/métodos , Autogestão/estatística & dados numéricos , Adulto JovemRESUMO
In a 1989 paper, Marchbanks et al. (Am J Epidemiol. 1989;130(2):259-267) noted inconsistent definitions of infertility across research and clinical practice and examined differences in prevalence estimates across definitions. Since their study, there have been substantial changes in society, technology, and clinical practice related to female reproductive health. In response, we revisited the original paper using data from a recent study among reproductive-aged women. Internal comparisons across various definitions of infertility were made by assessing how many and which women were classified as infertile, their age at infertility, and the probability of spontaneous pregnancy after infertility. Results were also compared with Marchbanks et al. Black women were more likely to be classified as infertile than white women based on the definition "12 months of unprotected intercourse" (40.1% vs. 33.7%) but less likely by "12 months of attempting pregnancy" (14.3% vs. 21.8%) and "visiting a doctor for help getting pregnant" (8.4% vs. 19.7%). After unprotected intercourse for 12 months, 36.1% of women who were attempting pregnancy spontaneously conceived by 6 months compared with 13.5% of women who were not attempting pregnancy. While our results for most infertility definitions were similar to those of Marchbanks et al., prevalence estimates continued to differ across demographic groups by definition.
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BACKGROUND: The objective of this retrospective cohort study was to determine whether women who conceive soon after treatment for cancer have higher risks of adverse pregnancy outcomes. METHODS: Vital records data were linked to cancer registry diagnosis and treatment information in 3 US states. Women who conceived their first pregnancy after diagnosis between ages 20 and 45 years with any invasive cancer or ductal carcinoma in situ were eligible. Log-binomial models were used to compare risks in cancer survivors who conceived in each interval to the risks in matched comparison births to women without cancer. RESULTS: Women who conceived ≤1 year after starting chemotherapy for any cancer had higher risks of preterm birth than comparison women (chemotherapy alone: relative risk [RR], 1.9; 95% confidence interval [CI], 1.3-2.7; chemotherapy with radiation: RR, 2.4; 95% CI, 1.6-3.6); women who conceived ≥1 year after starting chemotherapy without radiation or ≥2 years after chemotherapy with radiation did not. In analyses imputing the treatment end date for breast cancer survivors, those who conceived ≥1 year after finishing chemotherapy with or without radiation had no higher risks than women without cancer. The risk of preterm birth in cervical cancer survivors largely persisted but was somewhat lower in pregnancies conceived after the first year (for pregnancies conceived ≤1 year after diagnosis: RR, 3.5; 95% CI, 2.2-5.4; for pregnancies conceived >1 year after diagnosis: RR, 2.4; 95% CI, 1.6-3.5). CONCLUSIONS: In women who received chemotherapy, the higher risk of preterm birth was limited to those survivors who had short intervals between treatment and conception.Cancer 2018;124:000-000.
Assuntos
Antineoplásicos/efeitos adversos , Sobreviventes de Câncer , Resultado da Gravidez/epidemiologia , Nascimento Prematuro/epidemiologia , Adulto , Feminino , Humanos , Modelos Estatísticos , Vigilância da População , Gravidez , Nascimento Prematuro/etiologia , Sistema de Registros , Estudos Retrospectivos , Sobreviventes , Fatores de Tempo , Adulto JovemRESUMO
BACKGROUND: The objective of the current study was to characterize and identify factors associated with perceptions of risk of infertility among adult male survivors of childhood cancer. METHODS: A total of 1233 adult male survivors from the Childhood Cancer Survivor Study who were without a history of disease recurrence or subsequent malignancy reported their perceptions of their risk of infertility compared with men never diagnosed with cancer. Survivors were a median age of 37.8 years (range, 22.0-58.7 years) and were 28.4 years from their diagnosis (range, 21.4-39.2 years). Multivariable logistic regression evaluated factors associated with perceptions of risk. RESULTS: Overall, 35.9% of the survivors (443 of 1233 survivors) reported perceptions of their risk of infertility that were discordant with their actual risk based on previous cancer treatment exposures. Discordant perceptions were equally common among men exposed to gonadotoxic therapies (36.3%; 311 of 857 men) and those with no history of gonadotoxic exposure (35.1%; 132 of 376 men). Survivors who fathered children (odds ratio [OR], 4.14; 95% confidence interval [95% CI], 2.74-6.24), had no survivor-focused health care (OR, 3.07; 95% CI, 1.57-5.99), were nonwhite (OR, 2.28; 95% CI, 1.10-4.75), and were of lower income were more likely to report no increased risk of infertility after gonadotoxic treatment. Perceptions of increased risk of infertility among men with no history of gonadotoxic treatment were predicted by never having fathered a child (OR, 1.88; 95% CI, 1.17-3.03), recent participation in survivor-focused health care (OR, 2.11; 95% CI, 1.01-4.42), and higher educational achievement. CONCLUSIONS: Many male survivors of childhood cancer are unaware of how their cancer treatments could impact their reproductive health, underscoring the need for all patients to receive education regarding their risk of infertility throughout the continuum of cancer care. Cancer 2018;124:2447-55. © 2018 American Cancer Society.
Assuntos
Adultos Sobreviventes de Eventos Adversos na Infância/psicologia , Sobreviventes de Câncer/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Infertilidade/psicologia , Neoplasias/terapia , Adolescente , Adulto , Sobreviventes de Câncer/estatística & dados numéricos , Criança , Pré-Escolar , Estudos de Coortes , Humanos , Infertilidade/etiologia , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/mortalidade , Educação de Pacientes como Assunto , Percepção , Fatores de Risco , Inquéritos e Questionários/estatística & dados numéricos , Testículo/efeitos dos fármacos , Testículo/efeitos da radiação , Adulto JovemRESUMO
OBJECTIVE: To evaluate concurrent and longitudinal associations between psychosocial functioning and physical activity in adolescent and young adult survivors of early childhood cancer. METHODS: Adolescent survivors of early childhood cancer (diagnosed before age four) participating in the Childhood Cancer Survivor Study completed the Coping Health and Illness Profile-Adolescent Edition (CHIP-AE; n = 303; mean age at survey: 17.6 years). A subset of these survivors (n = 248) completed a follow-up survey an average of 6.0 years later (range: 4-10). Logistic regression identified associations between psychosocial functioning in adolescence and physical activity levels in adolescence and young adulthood. RESULTS: Survivors reported low physical activity as adolescents (46.1% scored below CHIP-AE cut-point) and young adults (40.8% below Centers for Disease Control guidelines). Poor physical activity during adolescence was associated with female sex (OR = 2.06, 95% CI, 1.18-3.68), parents with less than a college education (OR = 1.91, 95% CI, 1.11-3.32), previous treatment with cranial radiation (OR = 3.35, 95% CI, 1.69-6.88), TV time (OR = 1.77, 95% CI, 1.00-3.14), and limitations of activity due to health or mobility restrictions (OR = 8.28, 95% CI, 2.87-30.34). Poor diet (OR = 1.84, 95% CI, 1.05-3.26) and low self-esteem (OR = 1.80, 95% CI, 0.99-3.31) during adolescence were associated with lower odds of meeting Centers for Disease Control physical activity guidelines in young adulthood. CONCLUSION: These findings provide targets for future interventional studies to improve physical activity in this high-risk population.
Assuntos
Sobreviventes de Câncer/psicologia , Comportamentos Relacionados com a Saúde , Atividade Motora/fisiologia , Neoplasias/psicologia , Adolescente , Criança , Feminino , Humanos , Modelos Logísticos , Masculino , Fatores de Risco , Inquéritos e Questionários , Adulto JovemRESUMO
Using a survey, we assessed four health habits in 468 pediatric cancer survivors. Approximately 75% were at goal for ≥1 behavior-44% were active ≥1 hr per day, 40% engaged in ≤1 hr of screen time a day, 34% consumed sweetened beverages not often, and 4% ate >4 servings of fruits and vegetables per day. Survivors' age was associated with being active (P < 0.001) and limited screen time (P = 0.001). Males were more likely to be active (P = 0.003). The most common combination of goal behaviors was activity and screen time. Encouraging healthy behaviors may decrease the burden of late effects in survivors.
Assuntos
Sobreviventes de Câncer , Comportamento Alimentar , Comportamentos Relacionados com a Saúde , Caracteres Sexuais , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: To assess where, when, and why survivors of childhood cancer seek health information. PROCEDURE: Data from the Childhood Cancer Survivor Study (CCSS) cohort (n = 1386) and Health Information National Trends Survey (n = 2385) were analyzed to determine the health information seeking strategies of childhood cancer survivors. Descriptive frequencies, χ2 analyses, t-tests, and multivariable logistic regression models were used. RESULTS: To seek health-related information for themselves, 54% (n = 742) of the childhood survivors reported using the Internet in the past 12 months, compared to 45% of the general population (adjusted OR: 2.76; 95% CI: 2.40-3.19). Childhood cancer survivors who used the Internet for health information were more likely to be female, between the ages of 18-34, have received some college education or be a college graduate, and report being in poor health. Although survivors were less likely than the general population to trust health information from the Internet (P < 0.01), they indicated that they would like a secure website that uses information from their medical records to provide individualized health-related information. CONCLUSION: The use of the Internet to access health information among the childhood cancer survivors was over 50%. Information on late effects was a high priority for most survivors, as was their interest in websites related to late effects and a website on patient information tailored to personal situations. Identification of factors associated with searching the Internet for cancer information may provide direction for development of effective cancer communication interventions for this at-risk population.