Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents

Sadak, Karim Thomas; Gemeda, Milki T.; Grafelman, Michelle; Aremu, Taiwo Opeyemi; Neglia, Joseph P.; Freyer, David R.; Harwood, Eileen M.; Mikal, Jude P.

doi:10.1002/cam4.4164

Cited by 11 publications

(9 citation statements)

References 21 publications

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“…Provider bias also can cause loss to follow‐up due to difficulties managing their higher rates of nonadherence and psychosocial challenges 1,27,33 . Given that AYAs are at increased risk of developing long‐term physical and psychological complications from their initial therapy, it is crucial to ensure seamless transition of care between pediatric and adult providers to provide consistent survivorship care 34–36 …”

Section: Discussionmentioning

confidence: 99%

“…1,27,33 Given that AYAs are at increased risk of developing long-term physical and psychological complications from their initial therapy, it is crucial to ensure seamless transition of care between pediatric and adult providers to provide consistent survivorship care. [34][35][36] Another factor associated with loss to follow-up was disease group. Patients enrolled on CNS and ALL trials had lower rates of loss to follow-up, whereas those enrolled on GCT and HOD trials had higher loss to follow-up rates.…”

Section: Discussionmentioning

confidence: 99%

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Loss to follow‐up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group

Puthenpura

et al. 2023

Cancer

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Background:The increasing number of childhood cancer survivors necessitates continued follow-up to monitor for long-term complications. Inequities in loss to follow-up for patients enrolled on pediatric clinical trials have not been well studied. Methods:This was a retrospective study of 21,084 patients residing in the United States enrolled on phase 2/3 and phase 3 Children's Oncology Group (COG) trials between January 1, 2000 and March 31, 2021. Rates of loss to follow-up to COG were evaluated using log-rank tests and multivariable Cox proportional hazards regression models with adjusted hazard ratios (HRs). Demographic characteristics included age at enrollment, race, ethnicity, and zip code level socioeconomic data.Results: Adolescent and young adult (AYA) patients 15-39 years old at diagnosis had an increased hazard of loss to follow-up compared to patients 0-14 years old (HR, 1.89; 95% confidence interval (CI), 1.76-2.02). In the overall cohort, non-Hispanic Blacks were found to have an increased hazard of loss to follow-up compared to non-Hispanic Whites (HR, 1.56; 95% CI, 1.43-1.70). Among AYAs, the highest loss to follow-up rates were among non-Hispanic Blacks (69.8% � 3.1%), patients on germ cell tumor trials (78.2% � 9.2%), and patients living in zip codes with a median household income ≤150% of the federal poverty line at diagnosis (66.7% � 2.4%).Conclusions: AYAs, racial and ethnic minority patients, and those living in lower socioeconomic status areas had the highest rates of loss to follow-up among clinical trial participants. Targeted interventions are warranted to ensure equitable followup and improved assessment of long-term outcomes.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Loss to follow‐up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group

Puthenpura

et al. 2023

Cancer

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“…40 Unstructured transitional care from pediatric to adult-centric clinics and inadequate psychosocial support encompassing information needs regarding health insurance, anxiety, stress coping, and financial toxicity discouraged YACCSs from engaging long-term follow-ups. 41,42 For pathway C, we speculate that vaping behavior may not be asked specifically during the visits but more generally as substance misuse in clinical setting. Moreover, vaping as a substance misuse behavior remains contentious, not forgetting that young patients with cancer do not feel the need to discuss their substance use behavior with their providers.…”

Section: Discussionmentioning

confidence: 99%

Substance Use Among Young Adult Survivors of Childhood Cancer With Cognitive Impairment: An Analysis of the Project Forward Cohort

Ritt-Olson

Freyer

et al. 2023

JCO Oncology Practice

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PURPOSE: Young adult childhood cancer survivors (YACCSs) are often impacted by cancer-related cognitive impairment (CRCI) and psychological distress. Using the Project Forward Cohort, we evaluated the relationship between CRCI and substance use behaviors. METHODS: YACCSs were surveyed between 2015 and 2018 (N = 1,106, female = 50.8%, Hispanic = 51.5%, median age = 25.5 years). Associations between CRCI and substance use (tobacco, binge drinking, marijuana, prescription drug misuse, and e-cigarette/vaporizer) were examined in multivariate logistic or log-binomial regressions, adjusting for child at diagnosis (0-14 years), years since diagnosis, sex, race/ethnicity, cancer type, and treatment intensity. Mediation analysis was performed to determine opportunities for interventions. RESULTS: CRCI was reported by 144 (13.0%) survivors. The highest prevalence was observed in CNS cancers (25.4%) and leukemia (13.3%) survivors. After covariate adjustment, CRCI was associated with 2.26 times the odds of prior 30-day vaping (95% CI, 1.24 to 4.11; P = .007). Mediators with significant indirect effects in the CRCI-vaping relationship include depressive symptoms (Center for Epidemiological Studies Depression Scale) and having two or more cancer-related late effects ( P < .05). CONCLUSION: CRCI among YACCSs was associated with reports of vaping. Oncologists should screen for vaping behavior if CRCI is apparent. Increasing access to long-term follow-up clinics, addressing physical and mental health issues, and monitoring and educating on vaping and other substance use behaviors is recommended to improve the long-term health of YACCSs.

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“…Jiang et al ( 38 ) suggested that the “health status” of the insured is also a key factor in the perceptions of benefits. Moreover, Sadak et al and Sanogo et al ( 39 , 40 ) have shown that the experience of the insured is fundamental to evaluating the perceptions of medical insurance benefits.…”

Section: Methodsmentioning

confidence: 99%

Perceptions of the benefits of the basic medical insurance system among the insured: a mixed methods research of a northern city in China

Wang

et al. 2023

Front. Public Health

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BackgroundThe perceptions of the benefits of the basic medical insurance system among the insured not only reflect the system's performance but also the public's basic medical insurance policy literacy, valuable information for countries that have entered the stage of deepening reform. This study aims to examine the factors that affect the perceptions of the benefits of the basic medical insurance system in China, diagnose the key problems, and propose corresponding measures for improvement.MethodsA mixed method design was used. Data for the quantitative study were obtained from a cross-sectional questionnaire survey (n = 1,045) of residents of Harbin who had enrolled for basic medical insurance system. A quota sampling method was further adopted. A multivariate logistic regression model was then employed to identify the factors influencing the perceptions of the benefits of the basic medical insurance system, followed by semi-structured interviews with 30 conveniently selected key informants. Interpretative phenomenological analysis was used to analyze the interview data.ResultsApproximately 44% of insured persons reported low perceptions of benefits. The logistic regression model showed that low perceptions of the benefits of the basic medical insurance system was positively correlated with the experience of daily drug purchases (OR = 1.967), perceptions of recognition with basic medical insurance system (OR = 1.948), perceptions of the financial burden of participation costs (OR = 1.887), perceptions of the convenience of using basic medical insurance for medical treatment (OR = 1.770), perceptions of the financial burden of daily drug purchases costs (OR = 1.721), perceptions of the financial burden of hospitalization costs (OR = 1.570), and type of basic medical insurance system (OR = 1.456). The results of the qualitative analysis showed that the key problem areas of perceptions of the benefits of the basic medical insurance system were: (I) system design of basic medical insurance; (II) intuitive cognition of the insured; (III) rational cognition of the insured; and (IV) the system environment.ConclusionsImproving the perceptions of the benefits of the basic medical insurance system of the insured requires joint efforts in improving system design and implementation, exploring effective publicity methods of basic medical insurance system information, supporting public policy literacy, and promoting the health system environment.

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Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents

Abstract: This is an open access article under the terms of the Creat ive Commo ns Attri bution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 11 publications

References 21 publications

Loss to follow‐up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group

Loss to follow‐up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group

Substance Use Among Young Adult Survivors of Childhood Cancer With Cognitive Impairment: An Analysis of the Project Forward Cohort

Perceptions of the benefits of the basic medical insurance system among the insured: a mixed methods research of a northern city in China

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