Integration of cancer registry and electronic health record data to construct a childhood cancer survivorship cohort, facilitate risk stratification for late effects, and assess appropriate follow‐up care

Noyd, David H.; Neely, Nigel B.; Schroeder, Kristin; Lantos, Paul M.; Power, Steve; Kreissman, Susan G.; Oeffinger, Kevin C.

doi:10.1002/pbc.29014

Cited by 6 publications

(4 citation statements)

References 50 publications

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“…Although this approach provides a reasonable scaffold for stratification, it overlooks key factors to consider in determining which patients may benefit from more frequent interaction with the survivorship care team at the cancer center to support their access to services and resources versus follow-up in a community setting. 106,107 For example, socioeconomic (eg, insurance status) 108,109 and geographic (eg, distance from care) constraints 110,111 may preclude access to specialized providers to address cancer treatment-related toxicities uncommonly encountered in primary care settings. In addition, the burden of CHCs (total number and severity) 112 and the impact of individual CHCs on self-reported daily functioning (ie, health-related quality of life) may challenge identification of community providers comfortable caring for survivors with medically complex needs.…”

Section: Risk-stratified Approaches To Carementioning

confidence: 99%

Health Care Transitions Among Adolescents and Young Adults With Cancer

Ehrhardt,

Friedman,

Hudson

2024

JCO

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Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between age 15 and 39 years, are a growing population with unique developmental, psychosocial, and health-related needs. These individuals are at excess risk of developing a wide range of chronic comorbidities compared with the general population and, therefore, require lifelong, risk-based, survivorship care to optimize long-term health outcomes. The health care needs of survivors of AYA cancers are particularly complicated given the often heterogeneous and sometimes fragmented care they receive throughout the cancer care continuum. For example, AYA survivors are often treated in disparate settings (pediatric v adult) on dissimilar protocols that include different recommendations for longitudinal follow-up. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care and, in many cases, from pediatric to adult clinics while still remaining engaged in long-term follow-up. Systematic, age-appropriate transitional practices involving well-established clinical models of care, survivorship care plans, and survivorship guidelines are needed to facilitate effective transitions between providers. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes in AYA cancer survivors.

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Section: Risk-stratified Approaches To Carementioning

confidence: 99%

Health Care Transitions Among Adolescents and Young Adults With Cancer

Ehrhardt,

Friedman,

Hudson

2024

JCO

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“…23 Coding for bone tumors, central nervous system tumors, Hodgkin's lymphoma, non-Hodgkins lymphoma, leukemia, neuroblastoma, retinoblastoma, sarcoma, Wilms tumor, and other categories were previously reported. 24 The cancer registry captures whether patients received chemotherapy, surgery, radiation, or transplant as dichotomous variables. 21 Late effects risk strati cation, based on primary diagnosis and dichotomous treatment exposures, was conducted based on the British Childhood Cancer Survivor Study risk groups.…”

Section: Disease Classi Cation and Late Effects Risk Strati Cationmentioning

confidence: 99%

Rurality, Cardiovascular Risk Factors, and Early Cardiovascular Disease among Childhood, Adolescent, and Young Adult Cancer Survivors

Noyd,

Bailey,

Janitz

et al. 2024

Preprint

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Background and Aims: Cardiovascular risk factors (CVRFs) later in life potentiate risk for late cardiovascular disease (CVD) from cardiotoxic treatment among survivors. This study evaluated the association of baseline CVRFs and CVD in the early survivorship period. Methods This analysis included patients ages 0–29 at initial diagnosis and reported in the institutional cancer registry between 2010 and 2017 (n = 1228). Patients who died within five years (n = 168), those not seen in the oncology clinic (n = 312), and those with CVD within one year of diagnosis (n = 17) were excluded. CVRFs (hypertension, diabetes, dyslipidemia, and obesity) within one year of initial diagnosis, were constructed and extracted from the electronic health record based on discrete observations, ICD9/10 codes, and RxNorm codes for antihypertensives. Results Among survivors (n = 731), 10 incident cases (1.4%) of CVD were observed between one year and five years after the initial diagnosis. Public health insurance (p = 0.04) and late effects risk strata (p = 0.01) were positively associated with CVD. Among survivors with public insurance(n = 495), two additional cases of CVD were identified from claims data with an incidence of 2.4%. Survivors from rural areas had a 4.1 times greater risk of CVD compared with survivors from urban areas (95% CI: 1.1–15.3), despite adjustment for late effects risk strata. Conclusions Clinically computable phenotypes for CVRFs among survivors through informatics methods were feasible. Although CVRFs were not associated with CVD in the early survivorship period, survivors from rural areas were more likely to develop CVD. Implications for Survivors: Survivors from non-urban areas and those with public insurance may be particularly vulnerable to CVD.

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“…3 Young adulthood is a particularly high-risk time, as many childhood cancer survivors face difficulties transitioning from pediatric to adult healthcare systems and finding clinicians who are familiar with their healthcare needs. 4 Survivors who lack insurance, 3,[5][6][7] have lower income and education, 8 live farther from specialized clinics 3 or in a region with lower area socioeconomic status, 9 or belong to historically marginalized racial or ethnic groups, [10][11][12] are less likely to receive guideline-concordant survivorship care. Inequitable access and adherence to survivorship care lead to health disparities and may place already-vulnerable groups at greater risk of poor long-term health.…”

Section: Introductionmentioning

confidence: 99%

A qualitative study of childhood cancer families’ post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region

Smith,

Teer,

Tolamatl Ariceaga

et al. 2023

Pediatric Blood & Cancer

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BackgroundIndividual‐ and population‐level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non‐English language preference.ProcedureWe partnered with a community‐based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English‐ and Spanish‐speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post‐treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners.ResultsTwelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non‐English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min–max) age 20 (16–32) and 9 (5–19) years post diagnosis; parents (nine female, two male) were age 48 (40–60) and 14 (6–23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent–AYA–clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety‐net, fostering community, and facilitating H/L families’ communication.ConclusionsChildhood cancer has long‐lasting effects on families, and those with non‐English language preference face additional burdens. Community‐based support buffers some of the negative effects of childhood cancer and may reduce disparities.

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Integration of cancer registry and electronic health record data to construct a childhood cancer survivorship cohort, facilitate risk stratification for late effects, and assess appropriate follow‐up care

Cited by 6 publications

References 50 publications

Health Care Transitions Among Adolescents and Young Adults With Cancer

Health Care Transitions Among Adolescents and Young Adults With Cancer

Rurality, Cardiovascular Risk Factors, and Early Cardiovascular Disease among Childhood, Adolescent, and Young Adult Cancer Survivors

A qualitative study of childhood cancer families’ post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region

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