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Article ; Online: A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer.

DeGroote, Nicholas P / Harris, Ebonee / Lange, Anna / Wasilewski-Masker, Karen / Klosky, James L / Wolfe, Joanne / Kavalieratos, Dio / Brock, Katharine E

Journal of pain and symptom management

2024

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 ... ...

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.
Language	English
Publishing date	2024-03-31
Publishing country	United States
Document type	Journal Article
ZDB-ID	639142-4
ISSN	1873-6513 ; 0885-3924
ISSN (online)	1873-6513
ISSN	0885-3924
DOI	10.1016/j.jpainsymman.2024.03.023
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Article ; Online: An overview of implementing an evidence based program to increase HPV vaccination in HIV community clinics.

Wells, Jessica / Klosky, James L / Liu, Yuan / Gillespie, Theresa Wicklin

BMC public health

2022 Volume 22, Issue 1, Page(s) 1696

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Ambulatory Care Facilities ; HIV Infections/prevention & control ; Humans ; Papillomavirus Infections/complications ; Papillomavirus Infections/prevention & control ; Papillomavirus Vaccines/therapeutic use ; Vaccination
Chemical Substances	Papillomavirus Vaccines
Language	English
Publishing date	2022-09-07
Publishing country	England
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2041338-5
ISSN	1471-2458 ; 1471-2458
ISSN (online)	1471-2458
ISSN	1471-2458
DOI	10.1186/s12889-022-14100-0
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Article ; Online: The evolution of fertility preservation care models in a large pediatric cancer and blood disorders center.

Ludemann, James / Pruett, Megan / Klosky, James L / Meacham, Lillian / Cherven, Brooke

Pediatric blood & cancer

2022 Volume 70, Issue 1, Page(s) e30052

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 ... ...

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.
MeSH term(s)	Adolescent ; Child ; Humans ; Female ; Fertility Preservation/methods ; Neoplasms/therapy ; Medical Oncology ; Infertility ; Referral and Consultation ; Hematologic Diseases/therapy
Language	English
Publishing date	2022-10-29
Publishing country	United States
Document type	Journal Article
ZDB-ID	2131448-2
ISSN	1545-5017 ; 1545-5009
ISSN (online)	1545-5017
ISSN	1545-5009
DOI	10.1002/pbc.30052
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Article ; Online: Fertility-related worry among emerging adult cancer survivors.

Cherven, Brooke / Kelling, Erin / Lewis, Rebecca Williamson / Pruett, Megan / Meacham, Lillian / Klosky, James L

Journal of assisted reproduction and genetics

2022 Volume 39, Issue 12, Page(s) 2857–2864

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 ... ...

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.
MeSH term(s)	Humans ; Adult ; Male ; Female ; Adolescent ; Young Adult ; Cancer Survivors/psychology ; Quality of Life ; Fertility ; Infertility/psychology ; Survivors/psychology ; Neoplasms/therapy
Language	English
Publishing date	2022-11-30
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1112577-9
ISSN	1573-7330 ; 1058-0468
ISSN (online)	1573-7330
ISSN	1058-0468
DOI	10.1007/s10815-022-02663-1
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Article ; Online: Interest in fertility status assessment among young adult survivors of childhood cancer.

Cherven, Brooke / Lewis, Rebecca Williamson / Pruett, Megan / Meacham, Lillian / Klosky, James L

Cancer medicine

2022 Volume 12, Issue 1, Page(s) 674–683

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 ... ...

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.
MeSH term(s)	Female ; Humans ; Male ; Young Adult ; Child ; Adolescent ; Adult ; Cancer Survivors ; Neoplasms/complications ; Neoplasms/therapy ; Retrospective Studies ; Infertility/therapy ; Infertility/complications ; Survivors ; Fertility Preservation
Language	English
Publishing date	2022-06-01
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2659751-2
ISSN	2045-7634 ; 2045-7634
ISSN (online)	2045-7634
ISSN	2045-7634
DOI	10.1002/cam4.4887
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Article ; Online: Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.

Frederick, Natasha N / Lehmann, Vicky / Ahler, Astrid / Carpenter, Kristen / Cherven, Brooke / Klosky, James L / Nahata, Leena / Quinn, Gwendolyn P

Pediatric blood & cancer

2023 Volume 70 Suppl 5, Page(s) e30611

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Child ; Adolescent ; Young Adult ; Humans ; Adult ; Cancer Survivors ; Survivors ; Neoplasms/complications ; Neoplasms/therapy ; Sexual Health ; Survivorship
Language	English
Publishing date	2023-08-07
Publishing country	United States
Document type	Review ; Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2131448-2
ISSN	1545-5017 ; 1545-5009
ISSN (online)	1545-5017
ISSN	1545-5009
DOI	10.1002/pbc.30611
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Article ; Online: Reasons for refusal of the human papillomavirus vaccine among young cancer survivors.

Cherven, Brooke / Klosky, James L / Keith, K Elizabeth / Hudson, Melissa M / Bhatia, Smita / Landier, Wendy

Cancer

2022 Volume 129, Issue 4, Page(s) 614–623

Abstract: 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: ...

Abstract	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.
MeSH term(s)	Adolescent ; Adult ; Child ; Female ; Humans ; Male ; Young Adult ; Cancer Survivors ; Cancer Vaccines ; Health Knowledge, Attitudes, Practice ; Human Papillomavirus Viruses ; Neoplasms/epidemiology ; Papillomavirus Infections/complications ; Papillomavirus Infections/prevention & control ; Papillomavirus Infections/drug therapy ; Papillomavirus Vaccines ; Parents ; Vaccination
Chemical Substances	Cancer Vaccines ; Papillomavirus Vaccines
Language	English
Publishing date	2022-12-19
Publishing country	United States
Document type	Clinical Trial ; Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
ZDB-ID	1429-1
ISSN	1097-0142 ; 0008-543X ; 1934-662X
ISSN (online)	1097-0142
ISSN	0008-543X ; 1934-662X
DOI	10.1002/cncr.34521
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Article ; Online: Diminished ovarian reserve in adolescent cancer survivors treated with heavy metal chemotherapy.

Pruett, Megan / Williamson Lewis, Rebecca / Klosky, James L / Effinger, Karen E / Meacham, Lillian R / Cherven, Brooke

Pediatric blood & cancer

2023 Volume 70, Issue 8, Page(s) e30448

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 ...

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.
MeSH term(s)	Female ; Humans ; Adolescent ; Child ; Cancer Survivors ; Ovarian Reserve ; Ovary ; Survivors ; Anti-Mullerian Hormone ; Metals, Heavy ; Neoplasms/drug therapy
Chemical Substances	Anti-Mullerian Hormone (80497-65-0) ; Metals, Heavy
Language	English
Publishing date	2023-05-27
Publishing country	United States
Document type	Journal Article
ZDB-ID	2131448-2
ISSN	1545-5017 ; 1545-5009
ISSN (online)	1545-5017
ISSN	1545-5009
DOI	10.1002/pbc.30448
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Article ; Online: Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module.

Alberts, Nicole M / Gilbert, Alexandra / Kang, Guolian / Okhomina, Victoria I / Flynn, Jessica S / Hodges, Jason / Hankins, Jane S / Klosky, James L

Pain

2023 Volume 165, Issue 3, Page(s) 715–722

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 ... ...

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.
MeSH term(s)	Humans ; Child ; Adolescent ; Female ; Caregivers ; Quality of Life ; Pain/diagnosis ; Anemia, Sickle Cell/complications ; Anemia, Sickle Cell/therapy ; Behavior Therapy
Language	English
Publishing date	2023-10-26
Publishing country	United States
Document type	Journal Article
ZDB-ID	193153-2
ISSN	1872-6623 ; 0304-3959
ISSN (online)	1872-6623
ISSN	0304-3959
DOI	10.1097/j.pain.0000000000003079
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Article ; Online: Evaluation of the Modified Reproductive Concerns Scale Among Emerging Adult Cancer Survivors.

Cherven, Brooke / Meacham, Lillian / Williamson Lewis, Rebecca / Klosky, James L / Marchak, Jordan Gilleland

Journal of adolescent and young adult oncology

2021 Volume 10, Issue 6, Page(s) 661–667

Abstract: Purpose: ...

Abstract	Purpose:
MeSH term(s)	Adult ; Cancer Survivors ; Cross-Sectional Studies ; Female ; Fertility Preservation ; Humans ; Male ; Middle Aged ; Neoplasms ; Psychometrics ; Quality of Life ; Reproducibility of Results ; Surveys and Questionnaires ; Survivors
Language	English
Publishing date	2021-03-26
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2607978-1
ISSN	2156-535X ; 2156-5333
ISSN (online)	2156-535X
ISSN	2156-5333
DOI	10.1089/jayao.2020.0219
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