130 results on '"Klosky JL"'
Search Results
2. Relations between posttraumatic stress and posttraumatic growth in long- term survivors of childhood cancer: A report from the childhood cancer survivor study
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Klosky, JL, Krull, KR, Kawashima, T, Leisenring, W, Randolph, ME, Zebrack, B, Stuber, ML, Robison, LL, and Phipps, S
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Objective: Contemporary models of trauma suggest that posttraumatic stress and growth should be related and that symptoms of stress resulting from a perceived trauma (e.g., childhood cancer) are prerequisite for posttraumatic growth (PTG) to occur. However, empirical data regarding the relationship of posttraumatic stress and growth have been equivocal. The purpose of this study is to examine the relationship between posttraumatic stress symptoms (PTSS) and PTG among adult survivors of childhood cancer. Methods: Survey methods were used to collect data from 6,162 survivors participating in the Childhood Cancer Survivor Study (CCSS). Nonparametric correlation was examined pairwise between PTG and PTSS using Spearman's correlation coefficient with 95% confidence intervals, with nonlinear canonical correlation analysis being conducted to examine relationships between subscales. A multivariable partial proportional odds model was also fit for PTG total quartiles focusing on associations with PTSS total quartiles while adjusting for sociodemographic and medical variables. Results: Examination of unadjusted PTSS and PTG total scores revealed a Spearman correlation of 0.11 (p
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- 2014
3. Smoking among parents of pediatric cancer patients and children's exposure to environmental tobacco smoke.
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Tyc VL, Throckmorton-Belzer L, Klosky JL, Greeson FL, Lensing S, Rai SN, and Hudson MM
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For 303 children newly diagnosed with cancer, we investigated the prevalence of parental smoking and examined patients' respiratory or pulmonary symptoms according to household smoking status. Results indicated that approximately 45 percent of patients came from households with at least one current parent smoker and 20 percent of current non-smoking parents reported past tobacco use. There was a trend for more patients from smoking households to experience respiratory problems than patients from non-smoking households (p = .068). In conclusion, many patients are at risk for parental smoke exposure and associated health problems if they are continually exposed during therapy. Clinician-delivered interventions to reduce environmental smoke exposure are clearly warranted. [ABSTRACT FROM AUTHOR]
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- 2004
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4. An exploratory study to investigate cognitive-motivational variables as predictors of health behaviours in adolescents.
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Tyc VL, Nuttbrock-Allen D, Klosky JL, and Ey S
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Objective: This study examines the relation between cognitive-motivational variables and self-reported health behaviours among adolescents. Design Cross-sectional survey of adolescents via questionnaires delivered in classrooms.Setting: One large junior high school and two senior high schools located in the Memphis area.Method Data from 257 7th to 12th graders were used to determine their practice of health behaviours as well as their perceptions of health status and vulnerability, optimism and rebelliousness/risk taking.Results: Adolescent males and females who were less rebellious and had better health perceptions reported healthier behavioural practices. A stronger significant inverse relationship between perceived vulnerability and health behaviour scores was found for females. Optimism was significantly and positively correlated with health behaviour scores only among females. Adolescents in lower grades obtained higher health behaviour scores than adolescents in higher grades. Males had higher rebelliousness scores than females. Demographic and cognitive-motivational variables accounted for 26 per cent of the variance in health behaviour scores.Conclusion: Cognitive-motivational factors should be considered when designing health promotion programmes for adolescents. [ABSTRACT FROM AUTHOR]
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- 2004
5. Children's distress in anticipation of radiation therapy procedures.
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Tyc VL, Klosky JL, Kronenberg M, de Armendi AJ, and Merchant TE
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We investigated levels of anticipatory distress in 80 pediatric patients, 2 to 7 years old, awaiting their initial radiation therapy (RT) procedure, and we examined demographic, medical, and psychosocial variables associated with their distress. Both observed behavior and heart rate outcomes were employed as measures of distress. Sixty-five percent of patients exhibited at least some degree of anticipatory behavioral distress prior to their RT simulation procedure. Thirty-four percent of patients displayed high levels of anticipatory behavioral distress; 16.3% exhibited high behavioral distress as well as high heart rates. Younger age and higher parent expectations of child distress were characteristic of children who displayed both high anticipatory behavioral distress and high heart rates. Child demographic factors, particularly younger age, were found to contribute significantly to the prediction of parent expectations of child distress. Implications for at-risk children in need of preparatory interventions for RT procedures are discussed. [ABSTRACT FROM AUTHOR]
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- 2002
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6. Predicting pediatric distress during radiation therapy procedures: the role of medical, psychosocial, and demographic factors.
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Klosky JL, Tyc VL, Tong X, Srivastava DK, Kronenberg M, de Armendi AJ, and Merchant TE
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OBJECTIVES: The purpose of this work was to identify demographic, medical, and psychosocial variables that predict radiation therapy-related distress among pediatric patients with cancer. PATIENTS AND METHODS: Seventy-nine children between the ages of 2 and 7 years were consecutively enrolled in the study. Radiation therapy-related distress was measured by rates of anesthesia, observed behavioral distress, and heart rate. RESULTS: Younger age and higher observed behavioral distress predicted the use of anesthesia, higher baseline heart rate predicted lower initial observed behavioral distress, and prone treatment position was associated with increases in both observed behavioral distress and heart rate relative to baseline. CONCLUSIONS: Modifiable treatment and psychological variables directly relate to pediatric radiation therapy-related distress. Implementation of developmentally appropriate and cost-effective interventions to reduce procedural radiation therapy distress is warranted. [ABSTRACT FROM AUTHOR]
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- 2007
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7. Testing effectiveness and implementation of a standardized approach to sexual dysfunction screening among adolescent and young adult-aged survivors of childhood cancer: A type I hybrid, mixed methods trial protocol.
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Demedis J, Reedy J, Miller K, Hu J, Klosky JL, Dorsey Holliman B, Peterson PN, Chow EJ, and Studts C
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- Adolescent, Adult, Female, Humans, Male, Young Adult, Mass Screening methods, Neoplasms diagnosis, Patient Reported Outcome Measures, Quality of Life, Sexual Dysfunction, Physiological diagnosis, Sexual Dysfunction, Physiological therapy, Multicenter Studies as Topic, Cancer Survivors psychology
- Abstract
Background: Approximately 20-50% of adolescent and young adult-aged childhood cancer survivors (AYA-CCS) experience sexual dysfunction (SD), although this healthcare need is widely underrecognized. Previous research from both AYA-CCS patients and their providers report that SD needs are unaddressed despite patient desires for SD discussions to be incorporated as part of their care. Patients and providers agree that standardized use of a patient-reported outcome measure may facilitate SD discussions; an SD screening approach was developed with patient and provider input. This study will measure the effectiveness of a standardized SD screening intervention and assess implementation outcomes and multilevel barriers and facilitators to guide future research., Methods: This multi-site, mixed methods, type 1 effectiveness-implementation hybrid trial will be evaluated using a pre-post design (NCT05524610). The trial will enroll 86 AYA-CCS (ages 15-39) from two cancer centers in the United States. The SD intervention consists of core fundamental functions with a "menu" of intervention options to allow for flexibility in delivery and tailoring in variable contexts. Effectiveness of the intervention on facilitating SD communication will be measured through patient surveys and clinical data; multivariable logistic regression will be used for the binary outcome of self-reported SD screening, controlling for patient-level predictors. Implementation outcomes will be assessed using mixed methods (electronic health record abstraction, patient and provider surveys, and provider interviews. Quantitative and qualitative findings will be merged using a joint display to understand factors affecting intervention success., Implications: Identification and treatment of SD in AYA-CCS is an important and challenging quality of life concern. The type 1 hybrid design will facilitate rapid translation from research to practice by testing the effects of the intervention while simultaneously identifying multilevel barriers and facilitators to real-world implementation. This approach will inform future testing and dissemination of the SD screening intervention., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Demedis et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2024
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8. A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer.
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DeGroote NP, Harris E, Lange A, Wasilewski-Masker K, Klosky JL, Wolfe J, Kavalieratos D, and Brock KE
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- Humans, Pilot Projects, Female, Male, Adult, Prospective Studies, Young Adult, Adolescent, Child, Patient Satisfaction, Child, Preschool, Caregivers, Infant, Feasibility Studies, Infant, Newborn, Telemedicine, Neoplasms therapy, Hospice Care methods
- Abstract
Background and Aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice collaboration. This pilot examines the impact of three coordinated telehealth visits on these outcomes., Methods: This is a prospective pilot study of 0-29-year-old patients with cancer initiating hospice care between 2021-2023. Adult patients, caregivers, oncology and palliative care clinicians, hospice nurses and administrators were surveyed about feasibility and acceptability with telehealth (Technology Acceptance Model 2) after first and third telehealth visits. Hospice satisfaction (Consumer Assessment of Healthcare Providers and Systems) was completed by caregivers after visit 3 and during bereavement. Healthcare professionals completed the Assessment of Interprofessional Team Collaboration Scale II (AITCS-II). Survey responses were summarized and differences in scores were analyzed., Results: Of 40 eligible patients, 24 enrolled, 19 completed visit 1, and 13 completed visit 3. Fourteen caregivers and two adult patients completed visit 1 surveys; nine caregivers and two adult patients completed visit 3 surveys. Participants highly rated telehealth acceptability after visit 1 (Median: 4.5, IQR: 4.0-4.7) and 3 (Median: 4.4, IQR: 4.0-4.7). Hospice services were rated as highly satisfactory at visit 3 (Median: 4.0, IQR: 3.7-4.0) and during bereavement (Median: 3.7, IQR: 3.5-4.0). Healthcare professionals (n = 85 surveys) reported excellent interprofessional collaboration (Hospital clinicians median: 99/115 and hospice teams 111/115)., Conclusions: Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory. Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)
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- 2024
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9. Testing effectiveness and implementation of a standardized approach to sexual dysfunction screening among adolescent and young adult-aged survivors of childhood cancer: A type I hybrid, mixed methods trial protocol: Effectiveness of sexual dysfunction screening among AYA cancer survivors: a study protocol.
- Author
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Demedis J, Reedy J, Miller K, Hu J, Klosky JL, Holliman BD, Peterson PN, Chow EJ, and Studts C
- Abstract
Background: Approximately 20-50% of adolescent and young adult-aged childhood cancer survivors (AYA-CCS) experience sexual dysfunction (SD), although this healthcare need is widely underrecognized. Previous research from both AYA-CCS patients and their providers report that SD needs are unaddressed despite patient desires for SD discussions to be incorporated as part of their care. Patients and providers agree that standardized use of a patient-reported outcome measure may facilitate SD discussions; an SD screening approach was developed with patient and provider input. This study will measure the effectiveness of a standardized SD screening intervention and assess implementation outcomes and multilevel barriers and facilitators to guide future research., Methods: This multi-site, mixed methods, type 1 effectiveness-implementation hybrid trial will be evaluated using a pre-post design (NCT05524610). The trial will enroll 86 AYA-CCS (ages 15-39) from two cancer centers in the United States. The SD intervention consists of core fundamental functions with a "menu" of intervention options to allow for flexibility in delivery and tailoring in variable contexts. Effectiveness of the intervention on facilitating SD communication will be measured through patient surveys and clinical data; multivariable logistic regression will be used for the binary outcome of self-reported SD screening, controlling for patient-level predictors. Implementation outcomes will be assessed using mixed methods (electronic health record abstraction, patient and provider surveys, and provider interviews. Quantitative and qualitative findings will be merged using a joint display to understand factors affecting intervention success., Implications: Identification and treatment of SD in AYA-CCS is an important and challenging quality of life concern. The type 1 hybrid design will facilitate rapid translation from research to practice by testing the effects of the intervention while simultaneously identifying multilevel barriers and facilitators to real-world implementation. This approach will inform future testing and dissemination of the SD screening intervention., Competing Interests: Declaration of Interests The authors have declared that no competing interests exist.
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- 2024
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10. Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module.
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Alberts NM, Gilbert A, Kang G, Okhomina VI, Flynn JS, Hodges J, Hankins JS, and Klosky JL
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- Humans, Child, Adolescent, Female, Quality of Life, Pain diagnosis, Behavior Therapy, Caregivers, Anemia, Sickle Cell complications, Anemia, Sickle Cell therapy
- Abstract
Abstract: Pain is a primary symptom of sickle cell disease (SCD) and is often severe and chronic. To treat SCD-related pain, proper assessment of SCD pain among youth, including the degree of concordance or agreement between youth and caregiver reports of pain, is essential but has not yet been adequately evaluated. In this study, 525 youth with SCD and their parents were evaluated as part of the Sickle Cell Clinical Research and Intervention Program (SCCRIP) to examine pain rating concordance and predictors of concordance. Youth and parents completed the Pediatric Quality of Life Inventory Sickle Cell Disease module (PedsQL-SCD) to measure pain, pain interference, and pain-related constructs. Disease, clinical, and demographic variables were obtained from the SCCRIP database. Intraclass correlations demonstrated moderate-to-poor consistency between youth and caregiver reports of pain and pain interference (ICCs range from 0.17 to 0.54). Analysis of covariance and regression models found that patient age, frequency of hospitalizations and emergency department (ED) visits, economic hardship, and fetal hemoglobin levels were significantly associated with varying pain-rating agreement levels among parent proxy and child self-report pain. Concordance of pain assessments among youth with SCD and their caregivers using the PedsQL-SCD Module was moderate at best, corroborating prior research. Youth factors predicting discordance among pain-related factors included increased ED visits, older age, and female sex. Collectively, these results bolster the use of integrated pain assessments to reduce parent-child discrepancies, thereby improving the adequacy of SCD-related pain assessment and treatment., (Copyright © 2023 International Association for the Study of Pain.)
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- 2024
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11. Contraceptive methods and fertility testing in young adult survivors of childhood cancer.
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Cherven B, Quast LF, Klosky JL, Gerhardt CA, Baust K, Calaminus G, Kaatsch P, Hagedoorn M, Tuinman MA, and Lehmann V
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- Adolescent, Humans, Child, Young Adult, Female, Male, Fertility, Survivors, Contraception methods, Contraceptive Agents, Cancer Survivors, Neoplasms epidemiology, Neoplasms complications
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Purpose: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany., Methods: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing., Results: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33)., Conclusion: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty., (© 2023. The Author(s).)
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- 2023
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12. Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.
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Frederick NN, Lehmann V, Ahler A, Carpenter K, Cherven B, Klosky JL, Nahata L, and Quinn GP
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- Child, Adolescent, Young Adult, Humans, Adult, Survivors, Survivorship, Cancer Survivors, Neoplasms complications, Neoplasms therapy, Sexual Health
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Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients., (© 2023 Wiley Periodicals LLC.)
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- 2023
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13. Fertility assessment and treatment in adolescent and young adult cancer survivors.
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Moravek MB, Pavone ME, Burns K, Kashanian JA, Anderson RA, Klosky JL, Rotz SJ, Stern CJ, Rodriguez-Wallberg KA, Levine JM, and Meacham LR
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- Humans, Male, Female, Young Adult, Adolescent, Fertility, Survivors psychology, Cancer Survivors psychology, Infertility, Fertility Preservation psychology, Neoplasms complications, Neoplasms therapy, Neoplasms psychology
- Abstract
In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status, and may under- or overestimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Posttreatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors., (© 2023 Wiley Periodicals LLC.)
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- 2023
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14. Evolution and growth of the ECHO (Enriching Communication skills for Health professionals in Oncofertility) program: a 5-year study in the training of oncofertility professionals.
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Pecoriello J, Klosky JL, Augusto B, Santiago-Datil W, Sampson A, Reich R, Vadaparampil S, and Quinn G
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- Humans, Male, Female, Adolescent, Young Adult, Health Personnel education, Reproductive Health education, Health Educators education, Information Dissemination, Cancer Survivors education, Cancer Survivors psychology, Fertility Preservation
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Purpose: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. The ECHO training program provides reproductive health communication training to individuals providing care for AYAs with cancer. The purpose of this project is to describe the growth of ECHO and evaluate changes in learner engagement over a 5-year period., Methods: ECHO is an 8-week online training program offered annually, with the program including learning modules, discussion topics and reflections, and synchronous discussions. Reflection quality scores and number of words were compared between the 5 cohorts using ANOVA with a p < .05 level of significance. Descriptive statistics summarized module topics, reflections, and synchronous discussions., Results: The average number of reflections per unique learner increased each year (1.4 in cohort 1 vs 4.1 in cohort 5), as did average length and quality of reflections (72.1 words in cohort 1 vs 203.4 words in cohort 5, p < .0001; score of 1.21 in cohort 1 vs 4.46 in cohort 5, p < .0001). The percentage of learners in attendance at synchronous discussions increased between cohorts 4 and 5 (4.8% of learners in cohort 4 vs 18.8% of learners cohort 5)., Conclusions: The ECHO program has seen significant growth and improvement in learner engagement over a 5-year period. This is particularly important given that student learning outcomes in online courses can be predicted by the level of engagement with online content., Implications for Cancer Survivors: As fertility and reproductive health remain a top life goal and discussion priority for AYAs surviving cancer, increasing clinical competencies of AHPs in oncofertility is essential., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2023
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15. Diminished ovarian reserve in adolescent cancer survivors treated with heavy metal chemotherapy.
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Pruett M, Williamson Lewis R, Klosky JL, Effinger KE, Meacham LR, and Cherven B
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- Female, Humans, Adolescent, Child, Ovary, Survivors, Anti-Mullerian Hormone, Cancer Survivors, Ovarian Reserve, Metals, Heavy, Neoplasms drug therapy
- Abstract
The extent to which heavy metal chemotherapy results in treatment-related ovarian damage is controversial. Anti-Mullerian hormone (AMH) levels measured more than 1 year after cancer therapy completion were abstracted from the medical records of 39 female survivors of childhood cancer aged 11 years and older, whose only gonadotoxic exposure was heavy metal chemotherapy. One-fifth of survivors who received cisplatin had AMH levels indicative of diminished ovarian reserve at last measurement. There was an observed clustering of low AMH in patients diagnosed in the peripubertal age range (i.e., 10-12 years). These findings may support a small, but present, risk of gonadal damage after heavy metal chemotherapy., (© 2023 Wiley Periodicals LLC.)
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- 2023
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16. Examining decisional needs and contextual factors influencing fertility status assessment among young female survivors of childhood cancer: A sequential mixed methods study protocol.
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Cherven B, Ivankova NV, Spencer JB, Fitzpatrick AM, Burns KC, Demedis J, Hoefgen HR, Mertens AC, and Klosky JL
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- Child, Adult, Female, Humans, Quality of Life, Survivors, Fertility, Cancer Survivors, Neoplasms complications, Neoplasms therapy
- Abstract
Introduction: Female cancer survivors who received gonadotoxic cancer treatment are at risk for profound diminished ovarian reserve and/or primary ovarian insufficiency with resulting infertility, which can be associated with distress and decreased quality of life.. Despite prioritizing future parenthood, many survivors are unsure of the impact of their treatment on their future fertility, and little is known about the perceived reproductive health needs and factors associated with receipt of a fertility status assessment (FSA). There is a lack of developmentally appropriate reproductive health decisional support interventions available for emerging adult cancer survivors. This study will explore the perceived reproductive health needs of emerging adult female survivors of childhood cancer and to identify decisional and contextual factors that influence pursuit of FSA using an explanatory sequential quantitative to qualitative mixed methods design., Methods and Analysis: This study will enroll 325 female survivors (aged 18 to 29 years and >1-year post treatment; diagnosed with cancer < age 21 years) from four cancer centers in the United States. Sociodemographic and developmental factors, reproductive knowledge and values, decisional needs, and receipt of an FSA will be assessed through a web-based survey. Informed by survey findings, a subset of participants will be recruited for qualitative interviews to explore decisional factors associated with uptake of an FSA. Clinical data will be abstracted from the medical records. Multivariable logistic regression models will be developed to identify factors associated with FSA and qualitative descriptive analysis will be used to develop themes from the interviews. Quantitative and qualitative findings will be merged using a joint display to develop integrated study conclusions and direct future interventional research., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Cherven et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2023
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17. Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group.
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Frederick NN, Klosky JL, Meacham L, Quinn GP, Kelvin JF, Cherven B, Freyer DR, Dvorak CC, Brackett J, Ahmed-Winston S, Bryson E, Su HI, Chow EJ, and Levine J
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- Adolescent, Young Adult, Humans, Male, Female, Child, United States, Cross-Sectional Studies, Semen, Medical Oncology, Fertility Preservation, Neoplasms complications, Neoplasms therapy
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Purpose: Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood., Methods: A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression., Results: One hundred forty-four programs (65.5%) returned surveys. Of these, 65 (45.1%) reported routine discussions of fertility with all female patients and 55 (38.5%) all male patients ( P = .25). Ninety-two (63.8%) reported no specific criteria for offering females fertility preservation (FP), compared with 40 (27.7%) for males ( P < .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial., Conclusion: Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.
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- 2023
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18. Reasons for refusal of the human papillomavirus vaccine among young cancer survivors.
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Cherven B, Klosky JL, Keith KE, Hudson MM, Bhatia S, and Landier W
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- Adolescent, Adult, Child, Female, Humans, Male, Young Adult, Health Knowledge, Attitudes, Practice, Human Papillomavirus Viruses, Parents, Vaccination, Cancer Survivors, Cancer Vaccines, Neoplasms epidemiology, Papillomavirus Infections complications, Papillomavirus Infections prevention & control, Papillomavirus Infections drug therapy, Papillomavirus Vaccines
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Background: Cancer survivors are at risk for developing subsequent human papillomavirus (HPV)-related malignancies. HPV vaccination rates among survivors remain low, and the reasons for refusal of the vaccine are unclear in this population., Methods: The authors conducted a secondary analysis of data from an open-label clinical trial evaluating the immunogenicity and safety of the HPV vaccine among vaccine-naive cancer survivors who were 9-26 years old and 1-5 years from the completion of their cancer treatment. Survivors/parents who declined trial participation were asked their reasons for declining. Refusal reasons were categorized, and multivariable logistic regression models were developed to identify associations between survivor characteristics and primary refusal reasons., Results: Among the 301 survivors who refused participation in the clinical trial, 215 (71.4%) refused for reasons related to the HPV vaccine. Reasons for vaccine-related refusal included safety concerns, vaccine hesitancy/disinterest, external influences, vaccine-related information deficits, and health beliefs/family decisional processes. Compared with males, females were more likely to refuse for reasons related to health beliefs/family decisional processes (odds ratio [OR], 2.08; 95% confidence interval [CI], 1.12-3.93; p = .022) and were less likely to do so because of external influences (OR, 0.43; 95% CI, 0.19-0.92; p = .035). Survivors approached about participation during the latter years of the trial were more likely to refuse because of safety concerns (OR, 3.33; 95% CI, 1.55-7.69; p = .003)., Conclusions: Cancer survivors refused participation in an open-label trial evaluating the immunogenicity and safety of the HPV vaccine primarily because of vaccine-related concerns that were unrelated to the research study. Many of these concerns are potentially addressable by health care providers using evidence-based messages tailored to the cancer survivor population., (© 2022 American Cancer Society.)
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- 2023
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19. Interest in fertility status assessment among young adult survivors of childhood cancer.
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Cherven B, Lewis RW, Pruett M, Meacham L, and Klosky JL
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- Female, Humans, Male, Young Adult, Child, Adolescent, Adult, Retrospective Studies, Survivors, Cancer Survivors, Neoplasms complications, Neoplasms therapy, Infertility therapy, Infertility complications, Fertility Preservation
- Abstract
Background: Cancer survivors who received gonadotoxic treatment are at-risk for future infertility and may desire a fertility status assessment (FSA), defined as semen analysis for males and consultation with a reproductive specialist for females. The purpose of this study was to describe the proportion of, and factors associated with, interest in FSA among young adult survivors of childhood cancer., Methods: This retrospective single-institution review included patients with prior gonadotoxic treatment, aged 18-25 years and >1 year from cancer treatment completion, who received a fertility-focused discussion during survivorship. Documentation of interest in and completion of FSA, worry about infertility, sociodemographic, and clinical characteristics were abstracted from medical records. Multivariable logistic regression was performed to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with interest in FSA., Results: Survivors (N = 259) were on average 19.2 ± 1.2 years at their fertility discussion; 55.6% were male and 57.9% non-Hispanic white. Interest in FSA was reported by 50.7% of males and 46.1% of females. Factors related to interest in FSA for males and females respectively, included worry about infertility (OR 2.40, 95%CI 1.11-5.27, p = 0.026 and OR 4.37, 95%CI 1.71-12.43, p = 0.003) and ≥2 fertility discussions (OR 3.78, 95%CI 1.70-8.75, p = 0.001 and 2.45, 95%CI 1.08-5.67, p = 0.033). Among males, fertility preservation consult/procedure at diagnosis (OR 3.02, 95%CI 1.09-9.04, p = 0.039) and high-risk for infertility (OR 2.47, 95%CI 1.07-5.87, p = 0.036) were also associated with interest in FSA., Conclusions: Cancer survivors are interested in FSA, particularly those who have had repeated fertility-focused discussions during survivorship care and who report worry about infertility., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)
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- 2023
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20. The evolution of fertility preservation care models in a large pediatric cancer and blood disorders center.
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Ludemann J, Pruett M, Klosky JL, Meacham L, and Cherven B
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- Adolescent, Child, Humans, Female, Medical Oncology, Referral and Consultation, Fertility Preservation methods, Neoplasms therapy, Infertility, Hematologic Diseases therapy
- Abstract
Background: Children and adolescents who receive gonadotoxic treatments are at risk for future infertility. While there is a growing focus on integrating fertility preservation (FP) within pediatric cancer and blood disorder centers, wide variations in care models and methods exist across institutions. The purpose of this work is to describe the evolution of FP care models within a large pediatric hematology/oncology center., Methods: Models of care and associated timeframes are described, including a pre-FP program model, establishment of a formal FP program, integration of nurse navigators, and the addition of FP consult stratification based on urgency (urgent/nonurgent). The number of patient consults within each model, patient sex, diagnosis (oncologic/hematologic), and consult timing (pre-gonadotoxic treatment/posttreatment completion) were abstracted from the clinical database., Results: The number of annual consults increased from 24 during the pre-FP program model (2015) to 181 during the current care model (2020). Over time, the proportion of consults for females and patients with nonmalignant hematologic disorders increased. Patient stratification reduced the proportion of consults needing to be completed urgently from 75% at the advent of the FP program to 49% in the current model., Conclusions: The evolution of care models within our FP program allowed for growth in the number of consults completed, expansion of services to more patients with nonmalignant hematologic disorders, and more consults for female patients. Nurse navigators play a critical role in care facilitating referrals, coordination, and patient education. Urgency stratification has allowed FP team members to manage increasing FP-related encounters., (© 2022 Wiley Periodicals LLC.)
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- 2023
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21. Fertility-related worry among emerging adult cancer survivors.
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Cherven B, Kelling E, Lewis RW, Pruett M, Meacham L, and Klosky JL
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- Humans, Adult, Male, Female, Adolescent, Young Adult, Quality of Life, Fertility, Survivors psychology, Cancer Survivors psychology, Infertility psychology, Neoplasms therapy
- Abstract
Purpose: Cancer survivors with a history of gonadotoxic treatment are at risk for future infertility and reproductive concerns, including worry about infertility. The purpose of this study was to describe factors associated with fertility-related worry among emerging adult survivors of childhood cancer., Methods: This chart review included patients aged 18.00-25.99 years and > 1 year from cancer treatment completion with a history of gonadotoxic treatment. Survivors were offered structured fertility-focused discussions at age ≥ 18 years, which assessed worry about future infertility. Data from this discussion (i.e., reported fertility-related worry (yes/no), sociodemographic, and clinical characteristics were abstracted from the medical record. Multivariable logistic regression with backwards elimination was used to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with fertility-related worry., Results: Survivors (N = 249) were a mean age of 19.1 ± 1.2 years at initial fertility discussion; 55.8% were male, 58.2% non-Hispanic White, and 27.3% were at high risk for future treatment-related infertility. Fertility-related worry was reported by 66.3% of survivors. Factors related to worry on multivariable analysis included female sex (OR: 2.64, 95%CI: 1.44-4.96, p = .002), solid tumor diagnosis (OR: 2.31, 95%CI: 1.15-4.71, p = .019), moderate and high risk of infertility (OR: 2.94, 95%CI: 1.23-7.64, p = .02; OR: 3.25, 95%CI: 1.55-7.17, p = .002), and ≥ 2 fertility discussions during survivorship care OR: 2.71, 95%CI: 1.46-5.20, p = .002)., Conclusions: Two-thirds of emerging adult cancer survivors expressed worry about future infertility, which has been linked to a variety of adverse quality of life outcomes. Survivors who are worried about infertility may benefit from psychological interventions., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2022
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22. Implementation of a provider-focused intervention for maximizing human papillomavirus (HPV) vaccine uptake in young cancer survivors receiving follow-up care in pediatric oncology practices: protocol for a cluster-randomized trial of the HPV PROTECT intervention.
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Landier W, Bhatia S, Richman JS, Campos Gonzalez PD, Cherven B, Chollette V, Aye J, Castellino SM, Gramatges MM, Lindemulder S, Russell TB, Turcotte LM, Colditz GA, Gilkey MB, and Klosky JL
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- Adolescent, Aftercare, Child, Humans, Papillomaviridae, Randomized Controlled Trials as Topic, Alphapapillomavirus, Cancer Survivors, Neoplasms, Papillomavirus Infections complications, Papillomavirus Infections prevention & control, Papillomavirus Vaccines
- Abstract
Background: Childhood cancer survivors are at high risk for developing new cancers (such as cervical and anal cancer) caused by persistent infection with the human papillomavirus (HPV). HPV vaccination is effective in preventing the infections that lead to these cancers, but HPV vaccine uptake is low among young cancer survivors. Lack of a healthcare provider recommendation is the most common reason that cancer survivors fail to initiate the HPV vaccine. Strategies that are most successful in increasing HPV vaccine uptake in the general population focus on enhancing healthcare provider skills to effectively recommend the vaccine, and reducing barriers faced by the young people and their parents in receiving the vaccine. This study will evaluate the effectiveness and implementation of an evidence-based healthcare provider-focused intervention (HPV PROTECT) adapted for use in pediatric oncology clinics, to increase HPV vaccine uptake among cancer survivors 9 to 17 years of age., Methods: This study uses a hybrid type 1 effectiveness-implementation approach. We will test the effectiveness of the HPV PROTECT intervention using a stepped-wedge cluster-randomized trial across a multi-state sample of pediatric oncology clinics. We will evaluate implementation (provider perspectives regarding intervention feasibility, acceptability and appropriateness in the pediatric oncology setting, provider fidelity to intervention components and change in provider HPV vaccine-related knowledge and practices [e.g., providing vaccine recommendations, identifying and reducing barriers to vaccination]) using a mixed methods approach., Discussion: This multisite trial will address important gaps in knowledge relevant to the prevention of HPV-related malignancies in young cancer survivors by testing the effectiveness of an evidence-based provider-directed intervention, adapted for the pediatric oncology setting, to increase HPV vaccine initiation in young cancer survivors receiving care in pediatric oncology clinics, and by procuring information regarding intervention delivery to inform future implementation efforts. If proven effective, HPV PROTECT will be readily disseminable for testing in the larger pediatric oncology community to increase HPV vaccine uptake in cancer survivors, facilitating protection against HPV-related morbidities for this vulnerable population., Trial Registration: ClinicalTrials.gov Identifier: NCT04469569, prospectively registered on July 14, 2020., (© 2022. The Author(s).)
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- 2022
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23. An overview of implementing an evidence based program to increase HPV vaccination in HIV community clinics.
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Wells J, Klosky JL, Liu Y, and Gillespie TW
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- Ambulatory Care Facilities, Humans, Vaccination, HIV Infections prevention & control, Papillomavirus Infections complications, Papillomavirus Infections prevention & control, Papillomavirus Vaccines therapeutic use
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Background: HPV-related anal cancer occurs in excess rates among people living with HIV (PLWH) and has been increasing in incidence. The HPV vaccine is an effective and safe approach to prevent and reduce the risk of HPV-related disease. Yet, HPV vaccine programs tailored and implemented in the HIV population are lagging for this high-risk group., Methods: A pre-post intervention study design will be used to tailor, refine, and implement the 4 Pillars™ Practice Transformation Program to increase HPV vaccination among PLWH. Guided by the RE-AIM framework, the CHAMPS study will provide training and motivation to HIV providers and clinic staff to recommend and administer the HPV vaccination within three HIV clinics in Georgia. We plan to enroll 365 HIV participants to receive HPV education, resources, and reminders for HPV vaccination. Sociodemographic, HPV knowledge, and vaccine hesitancy will be assessed as mediators and moderators for HPV vaccination. The primary outcome will be measured as an increase in uptake rate in initiation of the HPV vaccine and vaccine completion (secondary outcome) compared to historical baseline vaccination rate (control)., Discussion: The proposed study is a novel approach to address a serious and preventable public health problem by using an efficacious, evidence-based intervention on a new target population. The findings are anticipated to have a significant impact in the field of improving cancer outcomes in a high-risk and aging HIV population., Trial Registration: NCT05065840; October 4, 2021., (© 2022. The Author(s).)
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- 2022
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24. Infrastructure of Fertility Preservation Services for Pediatric Cancer Patients: A Report From the Children's Oncology Group.
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Frederick NN, Klosky JL, Meacham LR, Quinn GP, Kelvin JF, Cherven B, Freyer DR, Dvorak CC, Brackett J, Ahmed-Winston S, Bryson E, Chow EJ, and Levine J
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- Adolescent, Cross-Sectional Studies, Cryopreservation, Humans, Oocytes, Fertility Preservation, Neoplasms complications, Neoplasms epidemiology, Neoplasms therapy
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Purpose: Fertility preservation (FP) services are part of comprehensive care for those newly diagnosed with cancer. The capacity to offer these services to children and adolescents with cancer is unknown., Methods: A cross-sectional survey was sent to 220 Children's Oncology Group member institutions regarding institutional characteristics, structure and organization of FP services, and barriers to FP. Standard descriptive statistics were computed for all variables. The association between site-specific factors and selected outcomes was examined using multivariable logistic regression., Results: One hundred forty-four programs (65.5%) returned surveys. Fifty-three (36.8%) reported a designated FP individual or team. Sperm banking was offered at 135 (97.8%) institutions, and testicular tissue cryopreservation at 37 (27.0%). Oocyte and embryo cryopreservation were offered at 91 (67.9%) and 62 (46.6%) institutions, respectively; ovarian tissue cryopreservation was offered at 64 (47.8%) institutions. The presence of dedicated FP personnel was independently associated with the ability to offer oocyte or embryo cryopreservation (odds ratio [OR], 4.7; 95% CI, 1.7 to 13.5), ovarian tissue cryopreservation (OR, 2.7; 95% CI, 1.2 to 6.0), and testicular tissue cryopreservation (OR, 3.3; 95% CI, 1.4 to 97.8). Only 26 (18.1%) participating institutions offered all current nonexperimental FP interventions. Barriers included cost (70.9%), inadequate knowledge or training (60.7%), difficulty characterizing fertility risk (50.4%), inadequate staffing (45.5%), and logistics with reproductive specialties (38%-39%)., Conclusion: This study provides the most comprehensive view of the current landscape of FP infrastructure for children and adolescents with cancer and demonstrates that existing infrastructure is inadequate to offer comprehensive services to patients. We discuss modifiable factors to improve patient access to FP., Competing Interests: Gwendolyn P. QuinnHonoraria: Flo Health Christopher C. DvorakConsulting or Advisory Role: Alexion Pharmaceuticals, OmerosResearch Funding: Jasper Therapeutics Julienne BrackettResearch Funding: Bristol Myers Squibb Sameeya Ahmed-WinstonSpeakers' Bureau: Jazz Pharmaceuticals Eric J. ChowResearch Funding: Abbott Jennifer LevineStock and Other Ownership Interests: UMotifNo other potential conflicts of interest were reported.
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- 2022
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25. Immunogenicity and safety of the human papillomavirus vaccine in young survivors of cancer in the USA: a single-arm, open-label, phase 2, non-inferiority trial.
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Landier W, Bhatia S, Wong FL, York JM, Flynn JS, Henneberg HM, Singh P, Adams K, Wasilewski-Masker K, Cherven B, Jasty-Rao R, Leonard M, Connelly JA, Armenian SH, Robison LL, Giuliano AR, Hudson MM, and Klosky JL
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- Adolescent, Adult, Drug Administration Schedule, Female, Human papillomavirus 16 immunology, Human papillomavirus 18 immunology, Humans, Male, United States, Vaccines, Combined administration & dosage, Young Adult, Cancer Survivors statistics & numerical data, Immunogenicity, Vaccine, Papillomavirus Infections immunology, Papillomavirus Infections prevention & control, Papillomavirus Vaccines administration & dosage, Patient Safety
- Abstract
Background: Young survivors of cancer are at increased risk for cancers that are related to human papillomavirus (HPV), primarily caused by oncogenic HPV types 16 and 18. We aimed to examine the immunogenicity and safety of the three-dose series of HPV vaccine in young survivors of cancer., Methods: We conducted an investigator-initiated, phase 2, single-arm, open-label, non-inferiority trial at five National Cancer Institute-designated comprehensive cancer centres in the USA. Eligible participants were survivors of cancer who were HPV vaccine-naive, were aged 9-26 years, in remission, and had completed cancer therapy between 1 and 5 years previously. Participants received three intramuscular doses of either quadrivalent HPV vaccine (HPV4; enrolments on or before March 1, 2016) or nonavalent HPV vaccine (HPV9; enrolments after March 1, 2016) over 6 months (on day 1, at month 2, and at month 6). We also obtained data from published clinical trials assessing safety and immunogenicity of HPV4 and HPV9 in 9-26-year-olds from the general population, as a comparator group. The primary endpoint was antibody response against HPV types 16 and 18 at month 7 in the per-protocol population. A response was deemed non-inferior if the lower bound of the multiplicity-adjusted 95% CI was greater than 0·5 for the ratio of anti-HPV-16 and anti-HPV-18 geometric mean titres (GMTs) in survivors of cancer versus the general population. Responses were examined separately in male and female participants by age group (ie, 9-15 years and 16-26 years). Safety was assessed in all participants who received at least one vaccine dose and for whom safety data were available. This study is registered with ClinicalTrials.gov, NCT01492582. This trial is now completed., Findings: Between Feb 18, 2013, and June 22, 2018, we enrolled 453 survivors of cancer, of whom 436 received one or more vaccine doses: 203 (47%) participants had survived leukaemia, 185 (42%) were female, and 280 (64%) were non-Hispanic white. Mean age at first dose was 15·6 years (SD 4·6). 378 (83%) of 453 participants had evaluable immunogenicity data; main reasons for exclusion from per-protocol analysis were to loss to follow-up, patient reasons, and medical reasons. Data were also obtained from 26 486 general population controls. The ratio of mean GMT for anti-HPV types 16 and 18 in survivors of cancer versus the general population was more than 1 for all subgroups (ie, aged 9-15 years, aged 16-26 years, male, and female groups) in both vaccine cohorts (ranging from 1·64 [95% CI 1·12-2·18] for anti-HPV type 16 in female participants aged 9-15 years who received HPV9, to 4·77 [2·48-7·18] for anti-HPV type 18 in male participants aged 16-26 years who received HPV4). Non-inferiority criteria were met within each age and sex subgroup, except against HPV type 18 in female participants aged 16-26 years receiving HPV9 (4·30 [0·00-9·05]). Adverse events were reported by 237 (54%) of 435 participants; injection site pain was most common (174 [40%] participants). One serious adverse event (ie, erythema nodosum) was possibly related to vaccine (HPV9; 16-26 year female cohort)., Interpretation: Immunogenicity and safety of HPV vaccine three-dose series in survivors of cancer is similar to that in the general population, providing evidence for use in this clinically vulnerable population., Funding: US National Cancer Institute, Merck, Sharp & Dohme, and American Lebanese Syrian Associated Charities., Competing Interests: Declaration of interests JAC reports payment for a consulting or advisory role for X4 Pharmaceuticals. ARG reports payment for membership of a scientific advisory board and global advisory board for, honoraria from, and funds to their institution to conduct research studies unrelated to this research from Merck Sharp & Dohme. MMH reports payment for a consulting or advisory role for the Oncology Research Information Exchange Network Patient Advisory Committee, Princess Maxima Center Scientific Advisory Board, and SurvivorLink. WL reports non-financial support (provision of vaccine and laboratory analysis) to their institution related to this research from Merck Sharp & Dohme and payment for a consulting or advisory role for SurvivorLink. ML reports payment for consulting for Oncoceutics. All other authors declare no competing interests., (Copyright © 2022 Elsevier Ltd. All rights reserved.)
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- 2022
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26. Evaluation of the Modified Reproductive Concerns Scale Among Emerging Adult Cancer Survivors.
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Cherven B, Meacham L, Williamson Lewis R, Klosky JL, and Marchak JG
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- Adult, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Psychometrics, Quality of Life, Reproducibility of Results, Surveys and Questionnaires, Survivors, Cancer Survivors, Fertility Preservation, Neoplasms
- Abstract
Purpose: The reproductive concerns of emerging adult survivors of childhood cancer are not well described, and valid measurement tools tailored to this population are lacking. The purpose of this analysis was to evaluate a modified version of the Reproductive Concerns Scale (mRCS) among male and female survivors of childhood cancer. Methods: This is a secondary analysis of cross-sectional survey data collected from patients enrolled on an infertility-educational intervention study. Participants completed the mRCS at baseline. Cancer treatment data were abstracted from participant medical records. Principal component analyses were conducted to evaluate the factor structure of the mRCS for males, females, and the entire sample. Internal consistency was evaluated using Cronbach's alpha. Open-ended responses were analyzed and used to assess the validity of relevant quantitative items on the mRCS. Results: The sample consisted of N = 98 participants who were an average of 19.1 (±1.1) years of age, 45.9% were male, and 61.2% were non-Hispanic white. Factor analyses revealed three domains: Fertility Concerns (Cronbach's alpha = 0.77), Health Concerns ( α = 0.74), and Information Seeking ( α = 0.57). Sex-specific factor analyses identified differences in scale items for males. The open-ended responses aligned well with participant scores on the Fertility Concerns subscale. Conclusion: The mRCS consists of three subscales relevant to emerging adult survivors of childhood cancer. Further analysis by sex suggests that separate scales for males and females are warranted. Future research is warranted to determine the clinical utility of using the mRCS as a screening tool to identify and address reproductive concerns among emerging adult survivors.
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- 2021
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27. Sexual behaviors and human papillomavirus vaccine non-initiation among young adult cancer survivors.
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Cherven B, Klosky JL, Chen Y, York JM, Heaton K, Childs G, Flynn JS, Connelly JA, Wasilewski-Masker K, Robison LL, Hudson MM, Wong FL, Bhatia S, and Landier W
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- Adolescent, Female, Health Knowledge, Attitudes, Practice, Humans, Male, Sexual Behavior, Vaccination, Young Adult, Cancer Survivors, Neoplasms, Papillomavirus Infections prevention & control, Papillomavirus Vaccines therapeutic use
- Abstract
Background: Young adult cancer survivors are at risk for subsequent human papillomavirus (HPV)-related malignancies. High-risk sexual behavior increases risk for HPV acquisition; HPV vaccination protects against infection. We aimed to determine the prevalence of sexual behaviors, factors related to high-risk sexual behaviors, and the relationship between sexual behaviors and HPV vaccine non-initiation among survivors., Methods: Survivors at comprehensive cancer centers, aged 18-26 years and 1-5 years post-treatment, reported sexual behaviors and HPV vaccine initiation (i.e., ≥ 1 dose). Multivariable logistic regression was performed to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with high-risk sexual behaviors (age at first intercourse < 16 years, ≥ 3 lifetime sexual partners, or condom use ≤ 50% of the time) and to explore the relationship between sexual behaviors and vaccine non-initiation., Results: Of the 312 participants (48.1% female, median age at cancer diagnosis 17.2 years and at survey 20.9 years), sexual intercourse was reported by 63.1%. Of those reporting intercourse, 74.6% reported high-risk sexual behavior. Factors related to high-risk sexual behavior included currently dating/partnered (OR = 4.39, 95%CI 2.5-7.7, P < 0.001) and perceived susceptibility to HPV (OR = 1.76, 95%CI 1.3-2.5, P < 0.001). Most survivors (75.3%) reported HPV vaccine non-initiation; sexual behaviors were not associated with vaccine non-initiation (P = 0.4)., Conclusions: Many survivors participate in high-risk sexual behaviors, yet HPV vaccine initiation rates are low. Factors related to high-risk sexual behaviors can inform interventions to reduce risk for HPV acquisition among survivors., Implications for Cancer Survivors: Cancer survivors participate in sexual behaviors that increase risk for HPV acquisition and would benefit from vaccination., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC part of Springer Nature.)
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- 2021
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28. Adolescent and young adult childhood cancer survivors' preferences for screening and education of sexual function.
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Sopfe J, Marsh R, Frederick NN, Klosky JL, Chow EJ, Dorsey Holliman B, and Peterson PN
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- Adolescent, Child, Early Detection of Cancer, Humans, Qualitative Research, Young Adult, Cancer Survivors, Neoplasms, Sexual Dysfunction, Physiological
- Abstract
Background: Sexual dysfunction (SD) is a common yet underrecognized concern among childhood cancer survivors (CCS). CCS who are now adolescent and young adult (AYA-CCS) identify SD as an unmet need. This study sought to explore AYA-CCS preferences on how, when, where, and by whom SD-focused communication should occur., Procedure: This qualitative study utilized semi-structured interviews to explore AYA-CCS (now aged 15-24 years) experiences with, and preferences for, SD conversations. Thematic analysis methodology guided interpretation; themes were clustered into categories of who, how, when, and where SD conversations should occur., Results: AYA-CCS highlighted the importance of patient-provider rapport to facilitate SD conversations, but did not have consistent preferences regarding provider type or specialty. Providers should reduce discomfort by normalizing ongoing, personalized conversations. Some AYA-CCS mentioned that notification that such a conversation is going to occur would be appreciated, and most were in favor of a screening tool to facilitate conversations. Preferences for when and where SD conversations should occur were centered on maximizing privacy., Conclusions: SD is an inadequately addressed concern in AYA-CCS, and providers must familiarize themselves with AYA-CCS preferences for discussing SD to reduce communication barriers and address this unmet need. In addition to corroborating prior studies' findings such as normalizing ongoing SD conversations, this study demonstrated novel ideas for reducing barriers, including use of a notification to prepare them prior to SD conversations, favoring the use of a screening tool, and the importance of establishing rapport prior to the SD conversations., (© 2021 Wiley Periodicals LLC.)
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- 2021
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29. Parent-Adolescent Concordance Regarding Fertility Perspectives and Sperm Banking Attempts in Adolescent Males With Cancer.
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Nahata L, Olsavsky A, Dattilo TM, Lipak KG, Whiteside S, Yeager ND, Audino A, Rausch J, Klosky JL, O'Brien SH, Quinn GP, and Gerhardt CA
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- Adolescent, Child, Female, Humans, Male, Pilot Projects, Prospective Studies, Spermatozoa, Surveys and Questionnaires, Neoplasms, Parents
- Abstract
Objective: Approximately half of male childhood cancer survivors experience impaired fertility, yet fertility preservation (FP) remains underutilized. Although parent recommendation influences adolescents' decision-making, parents may be uncertain and/or underrate their sons' parenthood goals. This study assessed parent-adolescent and family-level concordance regarding adolescent fertility perspectives (i.e., values, goals) and associations with FP attempts., Methods: A prospective pilot study examined the impact of a family-centered values clarification tool (FAST) on banking attempts among adolescent males newly diagnosed with cancer at risk for infertility. The FAST assessed adolescent and parent perceptions of adolescents' fertility values and goals (i.e., perceived threat of infertility, perceived benefits/barriers to banking). Parent-adolescent concordance and family-level concordance on fertility perspectives were examined, along with associations with banking attempts and salient demographic factors., Results: Ninety-eight participants (32 adolescents aged 12-20, 37 mothers, 29 fathers) from 32 families completed the FAST before treatment initiation. Parent-adolescent dyads were concordant on approximately one-half of responses. Banking attempts were associated with higher family-level concordance regarding perceived benefits, r(32) = .40, p = .02. Older adolescent age was associated with higher family-level concordance regarding perceived threat, r(31) = .37, p = .04, and benefits, r(32) = .40, p = .03. Fathers' education was associated with higher family-level concordance regarding barriers, r(21) = .53, p = .01., Conclusions: When parents were concordant with their son's fertility values and goals, particularly perceived benefits, adolescents were more likely to attempt FP. Clinicians should facilitate sharing of fertility perspectives within families before cancer treatment, especially with younger adolescents. Psychosocial support for families facing FP decisions is recommended at diagnosis and across the care continuum., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2021
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30. Intellectual functioning among case-matched cohorts of children treated with proton or photon radiation for standard-risk medulloblastoma.
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Eaton BR, Fong GW, Ingerski LM, Pulsifer MB, Goyal S, Zhang C, Weyman EA, Esiashvili N, Klosky JL, MacDonald TJ, Ebb DH, MacDonald SM, Tarbell NJ, and Yock TI
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- Child, Cognition radiation effects, Humans, Protons, Retrospective Studies, Cerebellar Neoplasms radiotherapy, Medulloblastoma radiotherapy, Proton Therapy adverse effects
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Background: Proton therapy may reduce cognitive deficits after radiotherapy among brain tumor survivors, although current data are limited to retrospective comparisons between historical cohorts. The authors compared intelligence quotient scores within a case-matched cohort of children with medulloblastoma treated with proton radiation (PRT) or photon radiation (XRT) over the same time period., Methods: Among 88 consecutive patients with standard-risk medulloblastoma treated with PRT or XRT at 2 institutions from 2000 to 2009, 50 were matched 1:1 (25 with PRT and 25 with XRT) according to age, gender, date of diagnosis, histology, radiation boost, and craniospinal irradiation dose. One-way analyses of variance were performed to compare the Full-Scale Intelligence Quotient (FSIQ) and associated index scores between the 2 cohorts., Results: Neurocognitive data were available for 37 survivors (17 with PRT and 20 with XRT) from the matched cohort. The mean age was 8.5 years (SD, 4.14 years). The median follow-up was 5.3 years (range, 1.0-11.4 years) and 4.6 years (range, 1.1-11.2 years) for the PRT and XRT cohorts, respectively (P = .193). Patients treated with PRT had significantly higher mean FSIQ (99.6 vs 86.2; P = .021), verbal (105.2 vs 88.6; P = .010), and nonverbal scores (103.1 vs 88.9; P = .011) than the XRT-treated cohort. Differences in processing speed (82.9 vs 77.2; P = .331) and working memory (97.0 vs 92.7; P = .388) were not statistically significant., Conclusions: Radiotherapy-associated cognitive effects appear to be more attenuated after proton therapy. Comprehensive prospective studies are needed to appropriately evaluate the neurocognitive advantages of proton therapy., (© 2021 American Cancer Society.)
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- 2021
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31. Evaluation of the v2.0 Brief Profiles for Sexual Function and Satisfaction PROMIS in Adolescent and Young Adult Childhood Cancer Survivors.
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Sopfe J, Marsh R, Ziniel SI, Klosky JL, Chow EJ, Dorsey Holliman B, and Peterson PN
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- Adolescent, Child, Humans, Patient Reported Outcome Measures, Personal Satisfaction, Young Adult, Cancer Survivors, Neoplasms, Sexual Dysfunction, Physiological diagnosis, Sexual Dysfunction, Physiological etiology
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Purpose: Sexual dysfunction (SD) is a common, but often unrecognized potential late effect among childhood cancer survivors (CCS). Unfortunately, both patients and providers report low levels of routine screening and identify multiple barriers, including lack of knowledge, discomfort, and limited time. This is particularly true among CCS who are adolescent or young adult aged (AYA-CCS). One potential way to increase screening, detection, and treatment for SD among AYA-CCS is to employ patient-reported outcomes measures. While adult screening tools exist, no SD screening tool has been evaluated specifically among this younger population. Methods: This qualitative study used Think-Aloud and cognitive interviewing methods to obtain feedback from AYA-CCS on acceptability, usefulness, and validity of the Patient-Reported Outcomes Measurement Information System
® (PROMIS® ) v2.0 Brief Profiles for Sexual Function and Satisfaction (SexFS Brief) in CCS now 15-24 years of age. Results: The SexFS Brief demonstrated acceptability, response process and content validity, and usefulness among AYA-CCS. There were no detectable differences by age or gender. This study did not reveal any necessary modification to the SexFS Brief for this population. Conclusion: The PROMIS SexFS Brief is an acceptable and useful tool, with demonstrated response process and content validity, and may facilitate improved screening and diagnosis of SD among AYA-CCS. Furthermore, this tool was viewed favorably by AYA-CCS as a way to reduce barriers such as discomfort and lack of knowledge on the part of patients. Further evaluation of its effectiveness and acceptability in a clinical setting is warranted.- Published
- 2021
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32. Satisfaction with Fertility Preservation Decisions among Adolescent Males with Cancer: A Mixed Methods Study.
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Theroux CI, Hill KN, Olsavsky AL, Klosky JL, Yeager ND, Audino A, O'Brien SH, Quinn GP, Gerhardt CA, and Nahata L
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Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high ( M = 5.74-6.33 out of 7), with no significant differences between non-attempter ( n = 15) and attempter ( n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.
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- 2021
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33. Family communication about fertility preservation in adolescent males newly diagnosed with cancer.
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Olsavsky AL, Theroux CI, Dattilo TM, Klosky JL, O'Brien SH, Quinn GP, Gerhardt CA, and Nahata L
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- Adolescent, Communication, Decision Making, Female, Humans, Male, Mothers, Parents, Fertility Preservation, Neoplasms therapy
- Abstract
Background: Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision making in this population. This study explored FP communication among mothers, fathers, and their male adolescents newly diagnosed with cancer., Procedure: Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews 1-2 months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis., Results: Five process themes emerged: (1) reliance on health care team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with health care providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent's future partner's desire for biological parenthood (primarily parents); (3) banking while it is a viable option; (4) openness to alternative parenthood options (e.g., adoption/fostering, primary parents)., Conclusions: Understanding variation in what family members discuss and consider relevant when making FP decisions is an important step toward improving pediatric oncofertility care. Interventions are needed to facilitate family FP-related conversations and optimize decisional satisfaction over time., (© 2021 Wiley Periodicals LLC.)
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- 2021
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34. Health Behaviors and Neurocognitive Function in Survivors of Childhood Cancer.
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Kunin-Batson AS, Klosky JL, Carlson-Green B, and Brinkman TM
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- Adolescent, Child, Child, Preschool, Female, Humans, Infant, Male, Cancer Survivors, Cognitive Dysfunction, Health Behavior
- Abstract
Competing Interests: James L. KloskyEmployment: InTown Physical TherapyResearch Funding: Merck Sharp and DohmeNo other potential conflicts of interest were reported.
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- 2021
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35. Impact of a novel family-centered values clarification tool on adolescent sperm banking attempts at the time of a new cancer diagnosis.
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Nahata L, Dattilo TM, Olsavsky AL, Lipak KG, Whiteside S, Yeager ND, Audino A, Klosky JL, Rausch J, Saraf A, O'Brien SH, Quinn GP, and Gerhardt CA
- Subjects
- Adolescent, Adult, Child, Female, Humans, Male, Mothers, Neoplasms epidemiology, Neoplasms pathology, Prospective Studies, Spermatozoa growth & development, Young Adult, Fertility genetics, Fertility Preservation, Semen Preservation, Sperm Banks
- Abstract
Purpose: Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts., Methods: A prospective pilot study was conducted among families of males (12-25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts., Results: Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents' report of perceived threat (r
pb =.45, p=.01) and benefits (rpb =.57, p=.01). Only mothers' proxy reports of adolescent perceived threat (rpb =.42, p=.01) and benefits (rpb =.47, p=.003) were associated with banking attempts, while fathers' self-reported perceived benefits (rpb =.43, p=.03), self-reported barriers (rpb =.49, p=.01), and proxy reports of adolescent perceived threat (rpb =.38, p=.04) and benefits (rpb =.59, p=.02) were associated with banking attempts., Conclusion: Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.- Published
- 2021
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36. Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Mulder RL, Font-Gonzalez A, van Dulmen-den Broeder E, Quinn GP, Ginsberg JP, Loeffen EAH, Hudson MM, Burns KC, van Santen HM, Berger C, Diesch T, Dirksen U, Giwercman A, Gracia C, Hunter SE, Kelvin JF, Klosky JL, Laven JSE, Lockart BA, Neggers SJCMM, Peate M, Phillips B, Reed DR, Tinner EME, Byrne J, Veening M, van de Berg M, Verhaak CM, Anazodo A, Rodriguez-Wallberg K, van den Heuvel-Eibrink MM, Asogwa OA, Brownsdon A, Wallace WH, Green DM, Skinner R, Haupt R, Kenney LB, Levine J, van de Wetering MD, Tissing WJE, Paul NW, Kremer LCM, and Inthorn J
- Subjects
- Adolescent, Adult, Child, Disease Progression, Female, Fertility Preservation trends, Humans, Male, Neoplasms complications, Neoplasms pathology, Neoplasms therapy, Young Adult, Cancer Survivors, Fertility Preservation ethics, Guidelines as Topic, Neoplasms epidemiology
- Abstract
Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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37. Pain in Youth With Sickle Cell Disease: A Report From the Sickle Cell Clinical Research and Intervention Program.
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Alberts NM, Kang G, Li C, Richardson PA, Hodges J, Hankins JS, and Klosky JL
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- Adolescent, Adult, Aged, Caregivers, Child, Cross-Sectional Studies, Humans, Pain Management, Anemia, Sickle Cell complications, Anemia, Sickle Cell epidemiology, Chronic Pain epidemiology
- Abstract
Objectives: Pain is prevalent among youth with sickle cell disease (SCD). However, previous research has been limited by small sample sizes and lacked examinations of developmental differences in pain, which are critical to minimizing the development of chronic pain as youth transition into adulthood. The primary aim of the current study was to compare pain and pain interference across 4 developmental groups in a large sample of youth with SCD. The secondary aim was to identify risk factors for greater pain and pain interference., Materials and Methods: Utilizing a cross-sectional study design, the expression and predictors of pain and pain interference were compared across 4 developmental stages: toddlers/preschoolers (2 to 4 y), school-aged children (5 to 7 y), preadolescents (8 to 12 y), and adolescents (13 to 18 y). Participants included 386 youth with SCD and their caregivers., Results: Caregiver-reported pain and pain interference and youth-reported pain interference increased across developmental groups and plateaued approaching adolescence (multivariate analyses of variance P=0.002 for pain and P<0.001 for pain interference). Elevated fatigue, anxiety, and perceived difficulties with pain management were the most robust predictors of higher youth- and caregiver-reported pain (βs ranging from 0.15 to 0.68; P<0.001) and pain interference (βs ranging from 0.18 to 0.64; P<0.001)., Discussion: Disease and treatment-related variables were not associated with pain. Self-reported pain was elevated in older versus younger developmental groups and was largely linked to anxiety, fatigue, and perceptions of pain management, thus highlighting the modifiable nature of factors influencing pain among youth with SCD.
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- 2021
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38. Factors Associated with Intention of Human Papillomavirus (HPV) Vaccine Initiation Among Females With and Without a History of Childhood Cancer.
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Hardin RN, Russell KM, Flynn JS, Gammel HL, Eddinger JR, Schenck LA, and Klosky JL
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- Adolescent, Adult, Child, Female, Humans, Logistic Models, Papillomavirus Infections psychology, Surveys and Questionnaires, Young Adult, Cancer Survivors psychology, Cancer Survivors statistics & numerical data, Health Knowledge, Attitudes, Practice, Intention, Papillomavirus Infections prevention & control, Papillomavirus Vaccines therapeutic use
- Abstract
Vaccination is available to prevent human papillomavirus (HPV) types that cause cervical and other cancers. This study aimed to describe and compare vaccine intention among young females with and without a cancer history, in addition to identifying factors associated with a HPV vaccination intention. Vaccine-naïve females (aged 18-26 years, n = 120) and maternal caregivers with vaccine-naïve daughters (aged 9-17 years, n = 197) completed surveys querying HPV vaccination intention, HPV knowledge, and communication, along with sociodemographic, medical, and health belief factors. Multivariable logistic regression was utilized to calculate odds ratio (OR) and 95% confidence intervals for HPV vaccination intention. No differences in vaccine intention were identified across cancer and comparison groups. Vaccine intention and predictors of intention among vaccine-naïve females differ by age, and there is variation in the factors which influence vaccine intention by age group. These results suggest interventions should be tailored based on developmental level.
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- 2020
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39. Protein Supplementation and Resistance Training in Childhood Cancer Survivors.
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Krull MR, Howell CR, Partin RE, Lanctot J, Phipps S, Klosky JL, Carney G, Mulrooney DA, Robison LL, Hudson MM, and Ness KK
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- Adolescent, Adult, Double-Blind Method, Exercise physiology, Feasibility Studies, Female, Humans, Male, Middle Aged, Walking Speed, Young Adult, Body Mass Index, Cancer Survivors, Dietary Proteins administration & dosage, Dietary Supplements, Muscle Strength physiology, Resistance Training adverse effects
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Purpose: Muscle weakness, low lean body mass, and poor physical performance are prevalent among adult survivors of childhood cancer (survivors). We evaluated the feasibility and effects of resistance training with and without protein supplementation on lean body mass and muscle strength among survivors., Methods: This double-blind placebo-controlled trial enrolled survivors ≥18 to <45 yr old. Participants were randomized to resistance training with protein supplement (21 g whey protein per day, 90 kcal) (RT + S) or resistance training with placebo (sucrose, 90 kcal) (RT + P). Participants received educational materials, access to a local fitness center, and a tailored resistance training program with tapered supervision. Participant retention and adherence were used to evaluate feasibility. Lean body mass and muscle strength were assessed at baseline and 24 wk, using dual x-ray absorptiometry, and dynamometer testing or one-repetition maximum testing, respectively. Mean changes were compared with two-way ANOVA., Results: Of 70 participants randomized, 57 completed the 24-wk intervention (24 in RT + S, 33 in RT + P). The RT + S group completed 74.8% and the RT + P group completed 67.0% of exercise sessions. Mean ± SD age for those who completed was 33.1 ± 7.0 yr, 67% were White and 47% female. There were no differences in change in lean mass (RT + S, 1.05 ± 2.34 kg; RT + P, 0.13 ± 2.19 kg; P = 0.10) or strength (grip RT + S, 1.65 ± 4.17 kg; RT + P, 1.63 ± 4.47 kg; P = 0.98; mean leg press RT + S, 58.4 ± 78.8 kg; RT + P, 51.0 ± 65.1 kg; P = 0.68) between groups. Both lean mass (P = 0.03) and strength (grip P = 0.003, leg press P < 0.001) increased over time., Conclusions: Supervised resistance training among survivors with protein supplementation is feasible but not more effective at increasing total lean body mass than resistance training alone.
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- 2020
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40. Parent recommendation to bank sperm among at-risk adolescent and young adult males with cancer.
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Flynn JS, Russell KM, Lehmann V, Schenck LA, and Klosky JL
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- Adolescent, Adult, Communication, Cross-Sectional Studies, Female, Follow-Up Studies, Humans, Infertility, Male psychology, Male, Middle Aged, Neoplasms pathology, Neoplasms psychology, Parent-Child Relations, Spermatozoa chemistry, Surveys and Questionnaires, Young Adult, Fertility Preservation psychology, Infertility, Male prevention & control, Neoplasms therapy, Parents psychology, Patient Acceptance of Health Care, Semen Preservation psychology, Sperm Banks statistics & numerical data
- Abstract
Background: Adolescent and young adult (AYA) males newly diagnosed with cancer are often faced with making quick decisions about whether to cryopreserve ("bank") sperm prior to treatment initiation. Given that parental influence is crucial among young patients, the present study examines the prevalence of and factors associated with parent recommendation to bank sperm., Procedure: Parents of 13- to 21-year-old males newly diagnosed with cancer and at risk for infertility secondary to impending gonadotoxic treatment completed questionnaires typically within one week of treatment initiation. Medical and sociodemographic data, communication factors, and psychological factors were considered in a logistic regression model of parent report of parental recommendation to bank sperm (yes/no)., Results: Surveys from 138 parents (70.3% female) of 117 AYA males (mean age = 16.1 years, SD = 2.0) were analyzed. Over half of parents recommended banking to their sons (N = 82; 59.4%). Parents who received a provider recommendation to bank sperm (odds ratio [OR] = 18.44, 95% confidence interval [CI], 4.20-81.01, P < 0.001) or who believed in the benefits of banking (OR = 1.22, 95% CI, 1.02-1.47, P = 0.03) were significantly more likely to recommend sperm banking., Conclusions: Given parents' role in influencing sperm banking outcomes, provider recommendation and promotion of banking benefits may influence parents and empower initiation of these sensitive discussions with their sons. Utilization of this approach should yield beneficial outcomes regardless of the banking decision., (© 2020 Wiley Periodicals LLC.)
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- 2020
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41. Psychosexual Functioning of Female Childhood Cancer Survivors: A Report From the St. Jude Lifetime Cohort Study.
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Bjornard KL, Howell CR, Klosky JL, Chemaitilly W, Srivastava DK, Brinkman TM, Green DM, Willard VW, Jacola LM, Krasin MJ, Hudson MM, Robison LL, and Ness KK
- Subjects
- Adult, Child, Cohort Studies, Female, Humans, Quality of Life, Survivors, Cancer Survivors psychology, Neoplasms, Sexual Dysfunctions, Psychological etiology
- Abstract
Introduction: There is a growing population of childhood cancer survivors at risk for adverse outcomes, including sexual dysfunction., Aim: To estimate the prevalence of and risk factors for sexual dysfunction among adult female survivors of childhood cancer and evaluate associations between dysfunction and psychological symptoms/quality of life (QOL)., Methods: Female survivors (N = 936, mean 7.8 ± 5.6 years at diagnosis; 31 ± 7.8 years at evaluation) and noncancer controls (N = 122) participating in the St. Jude Lifetime Cohort Study completed clinical evaluations, Sexual Functioning Questionnaires (SFQ), and Medical Outcomes Survey Short Forms 36 (SF-36). Linear models compared SFQ scores between sexually active survivors (N = 712) and controls; survivors with scores <10th percentile of controls were classified with sexual dysfunction. Logistic regression evaluated associations between survivor characteristics and sexual dysfunction, and between sexual dysfunction and QOL., Outcomes: Sexual dysfunction was defined by scores <10th percentile of noncancer controls on the SFQ overall, as well as the domains of arousal, interest, orgasm, and physical problems, while QOL was measured by scores on the SF-36 with both physical and mental summary scales., Results: Sexual dysfunction was prevalent among 19.9% (95% CI 17.1, 23.1) of survivors. Those diagnosed with germ cell tumors (OR = 8.82, 95% CI 3.17, 24.50), renal tumors (OR = 4.49, 95% CI 1.89, 10.67), or leukemia (OR = 3.09, 95% CI 1.50, 6.38) were at greater risk compared to controls. Age at follow-up (45-54 vs 18-24 years; OR = 5.72, 95% CI 1.87, 17.49), pelvic surgery (OR = 2.03, 95% CI 1.18, 3.50), and depression (OR = 1.96, 95% CI 1.10, 3.51) were associated with sexual dysfunction. Hypogonadism receiving hormone replacement (vs nonmenopausal/nonhypogonadal; OR = 3.31, 95% CI 1.53, 7.15) represented an additional risk factor in the physical problems (eg, vaginal pain and dryness) subscale. Survivors with sexual dysfunction, compared to those without sexual dysfunction, were more likely to score <40 on the physical (21.1% vs 12.7%, P = .01) and mental health (36.5% vs 18.2%, P < .01) summary scales of the SF-36. Only 2.9% of survivors with sexual dysfunction reported receiving intervention., Clinical Implications: Health care providers should be aware of the increased risk of sexual dysfunction in this growing population, inquire about symptomology, and refer for appropriate intervention., Strengths & Limitations: Strengths of this study include the use of a validated tool for evaluating sexual function in a large population of clinically assessed female childhood cancer survivors. Limitations include potential for selection bias, and lack of clinically confirmed dysfunction., Conclusion: Sexual dysfunction is prevalent among female childhood cancer survivors and few survivors receive intervention; further research is needed to determine if those with sexual dysfunction would benefit from targeted interventions. Bjornard KL, Howell CR, Klosky JL, et al. Psychosexual Functioning of Female Childhood Cancer Survivors: A Report From the St. Jude Lifetime Cohort Study. J Sex Med 2020;17:1981-1994., (Copyright © 2020 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.)
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- 2020
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42. Communication Regarding Therapeutic Clinical Trial Enrollment Between Oncologists and Adolescents and Young Adults with Cancer.
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Isack A, Santana VM, Russo C, Klosky JL, Fasciano K, Block SD, and Mack JW
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- Adolescent, Adult, Female, Humans, Male, Young Adult, Clinical Trials as Topic methods, Oncologists standards, Patient Participation methods
- Abstract
Adolescent and young adult (AYA) cancer patients enroll in therapeutic clinical trials at low rates. Prior study has focused on trial availability; this research attempts to elucidate the role of communication in individual decision-making. We surveyed 193 AYA patients and reviewed medical records of informed consent discussions. Twenty percent (38/193) of patients were offered trials, 58% (22/38) enrolled. Many were unable to correctly identify whether they were offered trials or enrolled, including 27% (6/22) of patients on clinical trials who believed that they were not. Efforts to improve communication have potential to enhance informed decision-making in this vulnerable population.
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- 2020
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43. Patient-Level Factors Associated With Lack of Health Care Provider Recommendation for the Human Papillomavirus Vaccine Among Young Cancer Survivors.
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York JM, Klosky JL, Chen Y, Connelly JA, Wasilewski-Masker K, Giuliano AR, Robison LL, Wong FL, Hudson MM, Bhatia S, and Landier W
- Subjects
- Adolescent, Adult, Child, Communication, Cross-Sectional Studies, Female, Humans, Insurance Coverage statistics & numerical data, Male, Papillomavirus Infections prevention & control, Sex Factors, Surveys and Questionnaires, Young Adult, Cancer Survivors statistics & numerical data, Health Personnel statistics & numerical data, Immunization Programs statistics & numerical data, Papillomavirus Vaccines administration & dosage
- Abstract
Purpose: Young cancer survivors are at increased risk for morbidities related to infection with the human papillomavirus (HPV), yet their HPV vaccine initiation rates remain low. Patient-/parent-reported lack of health care provider recommendation for HPV vaccination is strongly associated with vaccine noninitiation. We aimed to identify patient-level factors associated with survivor-/parent-reported lack of provider recommendation for HPV vaccination among young cancer survivors., Methods: Cancer survivors ages 9-26 years and 1-5 years off therapy completed a cross-sectional survey (parent-completed for survivors 9-17 years of age). Lack of health care provider HPV vaccine recommendation was the outcome of interest in a multivariable logistic regression model that included relevant patient-level sociodemographic, clinical, and vaccine-related variables., Results: Of 955 survivors, 54% were male, 66% were non-Hispanic White, and 36% had leukemia. At survey participation, survivors were an average age (± standard deviation) of 16.3 ± 4.7 years and 32.8 ± 14.7 months off therapy. Lack of provider HPV vaccine recommendation was reported by 73% (95% CI, 70% to 75%) of survivors. For the entire cohort, patient-level factors associated with lack of reported provider recommendation included perceived lack of insurance coverage for the HPV vaccine (odds ratio [OR], 4.0; 95% CI, 2.7 to 5.9; P < .001), male sex (OR, 2.8; 95% CI, 1.9 to 4.0; P < .001), and decreased parent-survivor communication regarding HPV vaccination (OR, 1.7 per unit decrease in score; 95% CI, 1.3 to 2.2; P < .001). In the sex- and age-stratified models, perceived lack of insurance coverage (all models) and male sex (age-stratified models) were also significantly associated with lack of reported provider recommendation., Conclusion: We identified factors characterizing survivors at risk for not reporting receipt of a health care provider HPV vaccine recommendation. Future research is needed to develop interventions that facilitate effective provider recommendations for HPV vaccination among all young cancer survivors.
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- 2020
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44. Change in Pain Status and Subsequent Opioid and Marijuana Use Among Long-Term Adult Survivors of Childhood Cancer.
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Huang IC, Alberts NM, Buckley MG, Li Z, Ehrhardt MJ, Brinkman TM, Allen J, Krull KR, Klosky JL, Greene WL, Srivastava DK, Robison LL, Hudson MM, and Anghelescu DL
- Abstract
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)., (© The Author(s) 2020. Published by Oxford University Press.)
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- 2020
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45. Educational Intervention to Address Infertility-Related Knowledge Gaps Among Adolescent and Young Adult Survivors of Childhood Cancer.
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Meacham LR, Williamson-Lewis R, Cherven BO, Effinger KE, Klosky JL, and Gilleland-Marchak J
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- Adolescent, Adult, Cancer Survivors, Female, Humans, Male, Prospective Studies, Young Adult, Education methods, Health Knowledge, Attitudes, Practice, Infertility therapy, Neoplasms complications
- Abstract
Purpose: This study evaluates the impact of a personalized educational session on survivors' knowledge of risk for infertility and describes preferences for reproductive health care. Methods: This was a two-phase prospective study of an individualized education session for adolescent and young adult (AYA) survivors aged 18-21 years. Sessions used sex-specific visual aids (phase I) or a personalized handout (phase II). Surveys assessing knowledge of overall risk for infertility (yes/no), level of risk (none, low, moderate, or high), relative impact of treatment on the window of fertility (same/less than peers), and the need to use protection to prevent pregnancy (yes/no) were completed at baseline and 1-month follow-up. Changes in knowledge were assessed using McNemar's test. Preferences for fertility education and fertility status assessment were ascertained. Results: In phase I ( n = 44), the educational intervention improved knowledge on the impact on the fertility window (from 69.7% correct responses to 90.9%; p = 0.03). In phase II ( n = 54), the addition of a personalized, take-home visual aid significantly improved knowledge across all four concepts: knowledge of risk (68.4%-93.1%; p = 0.03), risk level (39.5%-86.8%; p < 0.001), impact on the fertility window (55.3%-86.8%; p = 0.003), and protection for pregnancy prevention (62.2%-81.1%; p = 0.03). Nearly all males (97%) and 66% of females preferred private sessions. The majority of survivors (73%) would like to undergo fertility status testing in the next 5 years. Conclusion: In this sample of AYA cancer survivors, individualized education sessions with personalized visual aids and assessment of survivors' understanding of information significantly improved knowledge of key reproductive health concepts.
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- 2020
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46. Breastfeeding practices among childhood cancer survivors.
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Ogg S, Klosky JL, Chemaitilly W, Srivastava DK, Wang M, Carney G, Ojha R, Robison LL, Cox CL, and Hudson MM
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- Cross-Sectional Studies, Female, Humans, Surveys and Questionnaires, Cancer Survivors statistics & numerical data, Lactation physiology
- Abstract
Purpose: This cross-sectional study compared breastfeeding outcomes among childhood cancer survivors to those of women in the general population and evaluated whether breastfeeding is adversely affected by cancer treatment or endocrine-related late effects., Methods: A self-reported survey ascertained breastfeeding practices and incorporated items from the questionnaires used in the Infant Feeding Practices Study II (IFPS II) to allow comparison with the general population. Among 710 eligible survivors, 472 (66%) responded. The participants were predominantly non-Hispanic White (84%), married (73%), and had some college or less (60%). The mean maternal age at the time of birth of the first child after cancer treatment was 24 years (SD 24.3 ± 4.8)., Results: Fewer survivors planned to breastfeed than did IFPS II controls (67% vs. 82%, P < .0001), and fewer survivors initiated breastfeeding (66% vs. 85%, P < .0001). The median breastfeeding duration was shorter among survivors, with early undesired weaning occurring sooner in the survivor group (1.4 months, interquartile range (IQR) 0.5-3.5 months) than in the IFPS II group (2.7 months, IQR 0.9-5.4 months). A higher proportion of survivors reported an unfavorable breastfeeding experience (19% vs. 7.5%, P < .0001) and early, undesired weaning (57.5%, 95% CI 51-64) than did IFPS II participants (45.2%, 95% CI 44-47, P = .0164). Among survivors who expressed intention and chose to breastfeed, 46% endorsed disrupted lactation related to physiologic problems with high risk in those overweight/obese., Conclusions: Survivors are at risk of negative breastfeeding experiences; however, lactation outcomes were not significantly associated with cancer diagnosis, treatments, or endocrine complications., Implications for Cancer Survivors: Prior research has not examined the association of cancer treatments and clinically validated late effects with lactation outcomes in a clinically diverse childhood cancer survivor cohort. Findings from this study suggest that childhood cancer survivors, especially those who are overweight/obese, are at risk of having negative breastfeeding experiences. Early undesired weaning, physiologic problems related to lactation and misconceptions about breastfeeding, especially fears of passing on cancer through breastmilk, highlight the need for counseling and specialized support to optimize lactation outcomes in this vulnerable population.
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- 2020
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47. Fertility-related services in pediatric oncology across the cancer continuum: a clinic overview.
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Lehmann V, Kutteh WH, Sparrow CK, Bjornard KL, and Klosky JL
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- Adolescent, Adult, Cancer Survivors, Communication, Counseling methods, Counseling statistics & numerical data, Decision Making, Female, Fertility, Fertility Preservation psychology, Fertility Preservation statistics & numerical data, Humans, Male, Medical Oncology methods, Neoplasms epidemiology, Neoplasms psychology, Neoplasms rehabilitation, Pediatrics methods, Referral and Consultation, Retrospective Studies, Tennessee epidemiology, Young Adult, Fertility Preservation methods, Neoplasms therapy
- Abstract
Purpose: Fertility-related services in pediatric oncology are increasing, but barriers to care remain and few structured programs are described in the literature. Therefore, the study objectives were (1) to characterize fertility-related services in a large pediatric oncology center and (2) to discuss recommendations for fertility-related services across the pediatric cancer continuum., Methods: Medical records of all cases referred to our Fertility Preservation Clinic within a 3-year period were reviewed, which included 292 patients/survivors with malignant disease. Approximately half (n = 152/292, 52.1%) were cancer patients referred prior to treatment (n = 92/152) or while on active therapy (n = 60/152). The other half (n = 140/292; 47.9%) were survivors who had completed treatment., Results: Referrals more than doubled over 3 years. Most patients referred before treatment were offered and opted for FP (72.8% attempted; 58.9% completed). More male than female patients opted for FP (77.6% vs. 22.4%), but completion rates were higher among females (93.3% vs. 76.9%). Rates of FP before treatment did not increase over time (p = .752). Many patients on-treatment were referred for infertility risk counseling, demonstrating information/support needs in this group. Referred survivors questioned their fertility post-treatment and completed fertility assessments, indicating intact fertility among few (~ 15%)., Conclusions: This review demonstrated the acceptance and increasing need for fertility-related services in pediatric oncology across the cancer continuum, including FP before treatment, counseling during treatment, and fertility assessment in survivorship. Based on our experiences, current recommendations are discussed and include standardized procedures, streamlined referrals, adequate communication/education (of providers and families), and meeting specific needs of young cancer patients/survivors.
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- 2020
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48. Feasibility and acceptability of an animatronic duck intervention for promoting adaptation to the in-patient setting among pediatric patients receiving treatment for cancer.
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Miller TP, Klosky JL, Zamora F, Swift M, and Mertens AC
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- Animals, Child, Child, Preschool, Cohort Studies, Combined Modality Therapy, Feasibility Studies, Female, Follow-Up Studies, Hospitalization, Humans, Male, Neoplasms therapy, Prognosis, Cartoons as Topic, Ducks, Neoplasms psychology, Patient Acceptance of Health Care, Stress, Psychological prevention & control
- Abstract
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., (© 2019 Wiley Periodicals, Inc.)
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- 2019
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49. Leydig Cell Function in Male Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study.
- Author
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Chemaitilly W, Liu Q, van Iersel L, Ness KK, Li Z, Wilson CL, Brinkman TM, Klosky JL, Barnes N, Clark KL, Howell RM, Smith SA, Krasin MJ, Metzger ML, Armstrong GT, Bishop MW, van Santen HM, Pui CH, Srivastava DK, Yasui Y, Hudson MM, Robison LL, Green DM, and Sklar CA
- Subjects
- Adolescent, Adult, Cohort Studies, Cross-Sectional Studies, Humans, Luteinizing Hormone blood, Male, Middle Aged, Retrospective Studies, Risk Factors, Testosterone blood, Young Adult, Cancer Survivors, Leydig Cells pathology, Leydig Cells physiology, Neoplasms pathology
- Abstract
Purpose: Direct assessment of Leydig cell function in childhood cancer survivors has been limited. The objectives of this study were to describe the prevalence of and risk factors for Leydig cell failure (LCF), Leydig cell dysfunction (LCD), and associated adverse health outcomes., Patients and Methods: In this retrospective study with cross-sectional health outcomes analysis, we evaluated 1,516 participants (median age, 30.8 years) at a median of 22.0 years after cancer diagnosis. LCF was defined as serum total testosterone less than 250 ng/dL (or 8.67 nmol/L) and luteinizing hormone greater than 9.85 IU/L, and LCD by testosterone as 250 ng/dL or greater and luteinizing hormone greater than 9.85 IU/L. Polytomous logistic regression evaluated associations with demographic and treatment-related risk factors. Log-binomial regression evaluated associations with adverse physical and psychosocial outcomes. Piecewise exponential models assessed the association with all-cause mortality., Results: The prevalence of LCF and LCD was 6.9% and 14.7%, respectively. Independent risk factors for LCF included an age of 26 years or older at assessment, testicular radiotherapy at any dose, and alkylating agents at cyclophosphamide equivalent doses of 4,000 mg/m
2 or greater. The risk increased with older age, higher doses of testicular radiotherapy, and cyclophosphamide equivalent doses. LCF was significantly associated with abdominal obesity, diabetes mellitus, erectile dysfunction, muscle weakness, and all-cause mortality. LCD was associated with unilateral orchiectomy and the same risk factors as LCF; no significant associations were found with adverse physical or psychosocial outcomes., Conclusion: Older age, testicular radiotherapy, and exposure to alkylating agents were associated with LCF, which was associated with adverse physical and psychosexual outcomes. LCD, although having similar risk factors, was not associated with adverse health outcomes. Additional studies are needed to investigate the role of sex hormone replacement in mitigating the burden from adverse outcomes in survivors.- Published
- 2019
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50. Intent and subsequent initiation of human papillomavirus vaccine among young cancer survivors.
- Author
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Cherven B, Castellino SM, Chen Y, Wong FL, York JM, Wasilewski-Masker K, Hudson MM, Bhatia S, Klosky JL, and Landier W
- Subjects
- Adolescent, Adult, Child, Child, Preschool, Cross-Sectional Studies, Female, Health Knowledge, Attitudes, Practice, Humans, Male, Papillomaviridae physiology, Papillomavirus Infections virology, Papillomavirus Vaccines administration & dosage, Surveys and Questionnaires, Vaccination psychology, Young Adult, Cancer Survivors, Papillomaviridae drug effects, Papillomavirus Infections prevention & control, Papillomavirus Vaccines therapeutic use, Vaccination methods
- Abstract
Background: Despite an increased risk of subsequent human papillomavirus (HPV)-related malignancies, HPV vaccine initiation rates among cancer survivors remain critically low. The purpose of this study was to determine the relationship between HPV vaccine intent and subsequent vaccine initiation among cancer survivors by linking data from a cross-sectional survey with state-based immunization registry records., Methods: Cancer survivors who were 9 to 26 years old were surveyed 1 to 5 years after their treatment to assess their HPV vaccine initiation status, HPV vaccine intent, sociodemographic factors, and vaccine-related health beliefs. HPV vaccine doses/dates were abstracted from the Georgia Registry for Immunization Transactions for 3.5 years after survey participation. Logistic regression models identified factors associated with vaccine intent and subsequent vaccine initiation., Results: Among survivors who were HPV vaccine-naive at survey participation (n = 103), factors associated with vaccine intent included the following: 1) provider recommendation for the HPV vaccine (odds ratio [OR], 5.0; 95% confidence interval [CI], 1.4-18.1; P = .014), 2) positive general attitude toward vaccines (OR, 4.8; 95% CI, 2.0-11.2; P < .001), and 3) perceived severity of HPV disease (OR, 3.5; 95% CI, 1.2-9.9; P = .02). Of the vaccine-naive patients, 28 initiated the HPV vaccine at a median of 1.1 years after the survey. Initiation was more likely among survivors who had reported vaccine intent (OR, 3.9; 95% CI, 1.2-12.5; P = .02) and was less likely among older survivors (OR per year, 0.7; 95% CI, 0.6-0.9; P < .001)., Conclusions: These findings suggest that provider recommendation for the HPV vaccine plays a role in establishing intent, which then translates into subsequent initiation., (© 2019 American Cancer Society.)
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- 2019
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