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Patient-reported outcomes among survivors of pediatric hematopoietic stem cell transplant (HSCT) are understudied. We compared symptom prevalence, health-related quality of life (HRQOL), and risk factors in adult survivors of childhood hematologic malignancies treated with HSCT to those treated with conventional therapy and noncancer controls. Survivors of childhood hematologic malignancies (HSCT N = 112 [70% allogeneic, 30% autologous]; conventionally treated N = 1106) and noncancer controls (N = 242) from the St. Jude Lifetime Cohort Study completed surveys assessing 10 symptom domains and SF-36 HRQOL summary scores. Chronic health conditions (CHCs) were validated by clinical assessment. Multivariable logistic regression reveals that compared with noncancer controls, HSCT survivors endorsed a significantly higher symptom prevalence in sensation (OR = 4.7, 95% confidence interval [CI], 2.6-8.4), motor/movement (OR = 4.3, 95% CI, 1.6-11.0), pulmonary (OR = 4.6, 95% CI, 1.8-11.8), and memory domains (OR = 4.8, 95% CI, 2.5-9.2), and poorer physical HRQOL (OR = 6.9, 95% CI, 2.8-17.0). HSCT and conventionally treated survivors had a similar prevalence of all symptom domains and HRQOL (all P > .05); however, HSCT survivors had a significantly higher cumulative prevalence for specific symptoms: double vision (P = .04), very dry eyes (P < .0001), and trouble seeing when wearing glasses (P < .0001). Occurrence of organ-specific CHCs, instead of transplant receipt, was significantly associated with a higher prevalence of all symptom domains (all P < .05) in adult survivors of childhood cancer, except for pain and anxiety domains. This study found that patient-reported outcomes were equally impaired between HSCT and conventionally treated survivors, but poorer in both groups compared with noncancer controls. Poor patient-reported outcomes in all survivors of childhood hematologic malignancies correlated with the presence of CHCs, whether treated with conventional therapy or HSCT.
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Supervivientes de Cáncer/estadística & datos numéricos , Neoplasias Hematológicas/terapia , Trasplante de Células Madre Hematopoyéticas/métodos , Medición de Resultados Informados por el Paciente , Calidad de Vida , Adolescente , Adulto , Anciano , Estudios de Casos y Controles , Niño , Enfermedad Crónica , Estudios Transversales , Femenino , Neoplasias Hematológicas/patología , Humanos , Masculino , Persona de Mediana Edad , Factores de Riesgo , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: To the authors' knowledge, social network status in adolescent and young adult (AYA) cancer survivors has not been adequately studied to date. The authors developed and validated a functional social network index (FSNI) for AYA survivors, and compared its performance with that of 2 traditional indices (density and betweenness centrality). METHODS: A total of 102 AYA survivors and 102 noncancer controls who were matched for age, sex, and race were recruited from an Internet panel. Each participant reported relationships with up to 25 close friends and/or relatives. The authors developed a FSNI with reported marital status, contact frequency with friends/relatives, available resources for emotional and tangible support, and available resources for physical activity and weight management advice. Linear regression was used to analyze associations between the FSNI and cancer diagnoses, treatments, and coping skills. RESULTS: Based on the FSNI, survivors were found to have more available resources for emotional support (beta [b] = 3.02; P = .003), tangible support (b = 4.17; P<.001), physical activity advice (b = 3.94; P<.001), and weight management advice (b = 4.10; P<.001) compared with noncancer controls. Survivors of lymphoma had the largest FSNI, whereas survivors of central nervous system malignancies had the smallest (b = 2.77; P = .02). A higher FSNI was associated with better coping skills: less denial (b = 0.10; P = .01), using emotional support (b = 0.08; P = .04), using instrumental support (b = 0.12; P<.001), less behavioral disengagement (b = 0.08; P = .04), venting of emotions (b = 0.10; P = .004), positive reframing (b = 0.12; P = .003), planning for the future (b = 0.08; P = .03), and religious engagement (b = 0.16; P<.001). Density and betweenness centrality indices demonstrated neither significant differences in social networks between cancer survivors and controls (all P values >.05) nor significant associations with coping skills (all P values >.05). CONCLUSIONS: The FSNI appears to provide a better social network assessment for AYA cancer survivors than traditional indices. Cancer 2018;124:2220-7. © 2018 American Cancer Society.
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Supervivientes de Cáncer/psicología , Quimioradioterapia/efectos adversos , Neoplasias/psicología , Redes Sociales en Línea , Psicometría/métodos , Adaptación Psicológica/efectos de los fármacos , Adaptación Psicológica/efectos de la radiación , Adolescente , Adulto , Emociones , Femenino , Humanos , Masculino , Neoplasias/terapia , Calidad de Vida , Apoyo Social , Adulto JovenRESUMEN
BACKGROUND: We reviewed the effect of ovarian transposition (OT) on ovarian function among long-term survivors of childhood Hodgkin lymphoma (HL) treated with pelvic radiotherapy. PROCEDURE: Female participants (age 18+ years) with HL in the St. Jude Lifetime Cohort Study (SJLIFE) were clinically evaluated for premature ovarian insufficiency (POI) 10 or more years after pelvic radiotherapy. Reproductive history including age at menopause and pregnancy/live births was available on all patients. RESULTS: Of 127 eligible females with HL, 90 (80%) participated in SJLIFE, including 49 who underwent OT before pelvic radiotherapy. Median age at STLIFE evaluation was 38 years (range 25-60). In a multiple regression adjusted for age at diagnosis, pelvic radiotherapy doses > 1,500 cGy (hazard ratio [HR] = 25.2, 95% confidence interval [CI] = 3.1-207.3; P = 0.0027) and cumulative cyclophosphamide equivalent doses of alkylating agents > 12,000 mg/m2 (HR = 11.2, 95% CI = 3.4-36.8; P < 0.0001) were significantly associated with POI. There was no significant association between OT and occurrence of POI (HR = 0.6, 95% CI = 0.2-1.9; P = 0.41). CONCLUSIONS: OT did not appear to modify risk of POI in this historic cohort of long-term survivors of HL treated with gonadotoxic therapy. Modern fertility preservation modalities, such as mature oocyte cryopreservation, should be offered to at-risk patients whenever feasible.
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Preservación de la Fertilidad/métodos , Enfermedad de Hodgkin/radioterapia , Ovario/cirugía , Insuficiencia Ovárica Primaria/prevención & control , Adolescente , Adulto , Antineoplásicos Alquilantes/administración & dosificación , Antineoplásicos Alquilantes/efectos adversos , Niño , Preescolar , Terapia Combinada , Femenino , Enfermedad de Hodgkin/tratamiento farmacológico , Humanos , Órganos en Riesgo , Ovario/efectos de la radiación , Insuficiencia Ovárica Primaria/etiología , Traumatismos por Radiación/prevención & control , Sobrevivientes , Adulto JovenRESUMEN
BACKGROUND: To evaluate long-term health outcomes among childhood cancer survivors, St. Jude Children's Research Hospital (SJCRH) has established the St. Jude Lifetime Cohort Study (SJLIFE), comprised of adult survivors who undergo risk-directed clinical assessments. As in any human research study, SJLIFE participants are volunteers who may not represent the source population from which they were recruited. A lack of proportional representation could result in biased estimates of exposure-outcome associations. We compared available demographic, disease, and neighborhood level characteristics between participants and the source population to assess the potential for selection bias. PROCEDURES: Potentially eligible patients for SJLIFE were enumerated as of October 31, 2011. Data from electronic medical records were combined with geocoded census data to develop an analytic data set of 3,108 patients (the evaluable source population) of whom 1,766 (57%) underwent clinical assessment (participants). The ratio of relative frequencies (RRFs) for characteristics was compared between participants and the source population, where RRF = 1.0 indicates equal frequency of the characteristic. RESULTS: Participants and the source population had similar frequencies for most characteristics. Characteristics with modest relative differences (RRFs between 0.86 and 1.11) included sex, distance from SJCRH, primary diagnosis, median household income, median home value, and urbanicity. CONCLUSIONS: Our results indicate a lack of substantive differences in the relative frequencies of demographic, disease, or neighborhood characteristics between participants and the source population in SJLIFE, thus alleviating serious concerns about selective non-participation in this cohort. Bias in specific exposure-outcome relations is still possible and will be considered in individual analyses.
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Neoplasias/epidemiología , Sobrevivientes/estadística & datos numéricos , Adolescente , Adulto , Sesgo , Estudios de Cohortes , Demografía , Femenino , Hospitales Pediátricos , Humanos , Masculino , Proyectos de Investigación , Medición de Riesgo , Sesgo de Selección , Resultado del Tratamiento , Adulto JovenRESUMEN
PURPOSE: Social integration and relationship issues have been understudied among adolescent and young adult (AYA) cancer survivors. This study compared social relationships (social networks, support, and isolation) between AYA cancer survivors and noncancer controls, and identified social integration mechanisms through which the cancer experience influences patient-reported outcomes (PROs). MATERIALS AND METHODS: One hundred two AYA cancer survivors and 102 age, sex, and race-matched noncancer controls from a national Internet panel completed an online survey to identify up to 25 of closest friends and relatives whom they have contacted within the past 2 years. Participants' interpersonal connections were used to create a social network index. The Duke-UNC Functional Social Support Questionnaire, UCLA Loneliness Scale, and PROMIS-29 Profile were used to measure social support, perceived isolation or loneliness, and PROs (physical functioning, pain interference, fatigue, anxiety, and depression domains), respectively. Path analysis tested effects of cancer experience on PROs using serial social relationship variables as mediators. RESULTS: Compared with controls, survivors of lymphoma, leukemia, and solid tumor had better social networks; however, survivors of solid tumor and central nervous system malignancies had higher perceived loneliness (all P values < .05). Cancer experience was directly associated with poor PROs (P values < .05 for all domains except fatigue) and indirectly associated through the social network-support-loneliness pathway (all P values < .05). Survivors with higher loneliness had lower physical functioning and higher pain interference, fatigue, anxiety, and depression versus controls with lower loneliness (all P values < .05). CONCLUSION: Compared with controls, survivors were more socially connected but experienced greater loneliness, which was associated with poorer PROs. Screening social integration issues during follow-up care and providing appropriate interventions are warranted.
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Supervivientes de Cáncer , Neoplasias , Adolescente , Ansiedad , Humanos , Relaciones Interpersonales , Soledad , Neoplasias/epidemiología , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Adulto JovenRESUMEN
We evaluated pain status change and associations with subsequent opioid/marijuana use among 1208 adult survivors of childhood cancer. Pain status and opioid/marijuana were self-reported at baseline and follow-up evaluation (mean interval = 4.2 years). Over time, 18.7% of survivors endorsed persistent/increasing significant pain; 4.8% and 9.0% reported having used opioids and marijuana at follow-up. Persistent/increased (vs none/decreased) pain, persistent/increased (vs none/decreased) anxiety, and lack of health insurance increased odds of subsequent opioid use by 7.69-fold (95% confidence interval [CI] = 3.71 to 15.95), 2.55-fold (95% CI = 1.04 to 6.24), and 2.50-fold (95% CI = 1.07 to 5.82), respectively. Persistent/increased (vs none/decreased) depression increased odds of subsequent marijuana use by 2.64-fold (95% CI = 1.10 to 6.33).
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PURPOSE: The majority of research examining posttraumatic stress symptoms/disorder (PTSS/PTSD) among adult survivors of childhood cancer has been oriented to cancer, assuming that cancer has been the most traumatic experience in their lives. Whether that assumption is valid, and how it might impact assessment of PTSS, is unknown. METHODS: Survivors in the St. Jude Lifetime Cohort study completed an assessment of PTSS without cancer orientation, global psychological functioning, perceived stress, and cancer-related anxiety. RESULTS: Participants (n = 2969; Mage = 32.5 ± 8.5 years, 24.1 years since diagnosis, 49.1% female) obtained a mean score on the PTSD Checklist of 27.7, which is comparable to a normative population. Using established cutoffs, 11.8% obtained scores in the at-risk range. Multivariable modeling indicated that psychological factors [global distress (p < 0.0001), perceived stress (p = 0.001), cancer-related anxiety (p < 0.0001)] and demographic variables [female gender (p < 0.0001), survivors with less than a college education (p = 0.002)] were risk factors for increased PTSS. Only 14.5% identified a cancer-related traumatic event, and there was no difference in PTSS scores between those who identified cancer vs. non-cancer events as most stressful (28.4 ± 12.6 vs. 28.5 ± 12.7, p = 0.93). CONCLUSION: One in eight adult long-term survivors of childhood cancer had PTSS above the cutoff, though subgroups (e.g., females and those with lower education) report more distress symptoms. Most adult survivors do not identify cancer as their most stressful event. IMPLICATIONS FOR CANCER SURVIVORS: Screening for distress in survivorship clinics should not assume that distress is directly related to the survivor's cancer experience.
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Adultos Sobrevivientes de Eventos Adversos Infantiles , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/psicología , Adolescente , Adulto , Adultos Sobrevivientes de Eventos Adversos Infantiles/psicología , Adultos Sobrevivientes de Eventos Adversos Infantiles/estadística & datos numéricos , Edad de Inicio , Ansiedad/epidemiología , Ansiedad/etiología , Ansiedad/fisiopatología , Ansiedad/psicología , Niño , Cognición/fisiología , Estudios de Cohortes , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Neoplasias/epidemiología , Neoplasias/fisiopatología , Neoplasias/psicología , Neoplasias/rehabilitación , Factores de Riesgo , Trastornos por Estrés Postraumático/etiología , Trastornos por Estrés Postraumático/fisiopatología , Estrés Psicológico/epidemiología , Estrés Psicológico/etiología , Estrés Psicológico/fisiopatología , Adulto JovenRESUMEN
PURPOSE: The purposes of this study were to estimate the prevalence of emotional distress in a large cohort of adult survivors of childhood cancer and to evaluate the interrelationship of risk factors including cancer-related late effects. METHODS: Adult survivors of childhood cancer (N = 1,863), median age of 32 years at follow-up, completed comprehensive medical evaluations. Clinically relevant emotional distress was assessed using the Brief Symptom Inventory 18 and was defined as T-scores ≥63. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated using multivariable logistic regression models to identify risk factors for distress. Path analysis was used to examine associations among identified risk factors. RESULTS: Elevated global distress was reported by 15.1% of survivors. Cancer-related pain was associated with elevated distress (OR 8.72; 95% CI, 5.32-14.31). Survivors who reported moderate learning or memory problems were more likely to have elevated distress than survivors who reported no learning or memory problems (OR 3.27; 95% CI, 2.17-4.93). Path analysis implied that cancer-related pain has a direct effect on distress symptoms and an indirect effect through socioeconomic status and learning or memory problems. Similar results were observed for learning or memory problems. CONCLUSIONS: Childhood cancer-related morbidities including pain and learning or memory problems appear to be directly and indirectly associated with elevated distress symptoms decades after treatment. Understanding these associations may help inform intervention targets for survivors of childhood cancer experiencing symptoms of distress. IMPLICATIONS FOR CANCER SURVIVORS: A subset of long-term childhood cancer survivors experience significant emotional distress. Physical and cognitive late effects may contribute to these symptoms.
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Neoplasias/mortalidad , Neoplasias/psicología , Estrés Psicológico/epidemiología , Sobrevivientes , Adulto , Femenino , Humanos , Masculino , Análisis Multivariante , Neoplasias/fisiopatología , Dolor Intratable/psicología , PrevalenciaRESUMEN
Cancer survivors experience treatment-related complications that can be exacerbated by tobacco use. This study reports the prevalence of smokeless and dual tobacco use, compares these rates to the U.S. population, and examines tobacco risk factors among males surviving childhood cancer. Data from the Childhood Cancer Survivor Study (CCSS) 2007 survey were used (N = 3378). Standardized incidence ratios (SIR) were obtained by comparing CCSS data with the National Survey on Drug Use and Health. Logistic regression was used to evaluate associations between risk factors and tobacco use. Among male survivors, 8.3% and 2.3% were current smokeless tobacco and dual tobacco users, respectively. Survivors were less likely than population males to report smokeless tobacco [SIR = 0.64; 95% confidence interval (CI), 0.57-0.72) or dual tobacco (SIR = 0.37; CI, 0.29-0.46) use; however, non-White survivors aged 35 to 49 years were more likely to use smokeless tobacco (SIR = 2.32; CI, 1.27-3.90). Smokeless tobacco use was associated (P < 0.05) with younger age at diagnosis, lower education, being married or divorced/separated, and not living in the Northeastern United State, whereas history of cardiovascular- and/or pulmonary-toxic treatment was protective. Dual tobacco use was associated with younger age at diagnosis, lower education, divorce/separation, and high psychologic distress. Having active heart or circulatory conditions was protective. Although smokeless tobacco/dual tobacco use is generally low among childhood cancer survivors, these findings suggest that tobacco use screening should be expanded to include smokeless tobacco use, and that smokeless tobacco-specific education and cessation interventions should be provided to users. Screening and intervening for smokeless tobacco/dual tobacco use in childhood cancer survivors will reduce tobacco-related morbidity and mortality.
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Neoplasias/mortalidad , Sobrevivientes/psicología , Tabaquismo/epidemiología , Uso de Tabaco/efectos adversos , Tabaco sin Humo/efectos adversos , Adulto , Estudios de Cohortes , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Neoplasias/terapia , Pronóstico , Factores de Riesgo , Tasa de Supervivencia , Tabaquismo/etiología , Adulto JovenRESUMEN
PURPOSE: The aim of this study was to evaluate the clinical benefits of open lung biopsy in the diagnosis and treatment of pulmonary infiltrates in children who have undergone bone marrow transplantation. METHODS: The authors retrospectively reviewed the medical records of all patients in whom pulmonary infiltrates developed within 6 months after bone marrow transplantation. Of 528 patients who received bone marrow transplants (313 allogeneic, 215 autologous) at St Jude Children's Research Hospital between June 1991 and December 1998, 83 (16%) had radiographic evidence of pulmonary infiltrates after the procedure. Of these, 43 (52%) underwent bronchoalveolar lavage (BAL), 19 (23%) underwent open lung biopsy (OLB), 6 (7%) underwent needle biopsy, and 5 (6%) underwent transbronchial biopsy; 21 received medical therapy alone. The authors evaluated the outcome, culture results, histopathologic findings, radiographic findings, and clinical features of those who underwent OLB. RESULTS: The 19 patients ranged in age from 0.9 to 19.8 years (median, 11.4 years). Histopathologic studies indicated an infectious process in 6 patients (30%), bronchiolitis obliterans organizing pneumonia (BOOP) in 5 (26%), interstitial pneumonitis (IP) in 4 (21%), gangliosidosis in 1, and lymphocytic infiltrate in 1. Although the clinical plan was changed on the basis of the histopathologic diagnosis for 17 of the 19 patients (90%), improvement in outcome was seen in only 8 (47.5%) of these patients. Postoperative morbidity (30 days) was 47% and included prolonged intubation (7 patients), pneumothorax (2 patients), and pleural effusion (1 patient). The 30-day survival rate was 63.2% plus minus 10.6%. No patient with multisystem organ failure (MSOF), ventilator dependence, or a postoperative complication survived after OLB. CONCLUSIONS: Histopathologic analysis of OLB specimens is very accurate in determining the cause of pulmonary infiltrates in pediatric patients who have undergone BMT, but OLB may not improve patient outcome. Because the postoperative morbidity and mortality rates associated with OLB are high, careful patient selection is necessary. The mortality rates of patients with MSOF or ventilator dependence are particularly high; therefore, less-invasive alternatives for diagnosis of pulmonary lesions should be considered before OLB is performed.