Healthcare provider and staff perspectives on barriers to Medicaid insurance for childhood cancer survivors.

258 Background: One in three childhood cancer survivors are enrolled in Medicaid at diagnosis, a population requiring lifelong health insurance to support long-term outcomes. However, knowledge gaps remain regarding modifiable factors to Medicaid coverage for adolescent/young adult (AYA) or adult survivors of childhood cancer. We explored healthcare provider and staff perspectives on barriers and facilitators to continuous Medicaid coverage for this high-need population. Methods: We conducted semi-structured interviews with 22 stakeholders—including oncologists, nurses, social workers (SW), and financial counselors (FC)—who directly care for AYA/adult survivors of childhood cancer. Interviews (~45 minutes) were audio-recorded, transcribed, coded using both deductive and inductive approaches, and compared across practice type. Results: Participants represented 11 cancer centers in Medicaid expansion (55%) and non-expansion (45%) states. Most were female (91%), aged 40–54 (50%), and non-Hispanic White (73%). Practice types included oncologists/nurses (54%) and SW/FC (46%). Five key barriers to continuous coverage emerged. First, many oncologists and nurses reported a lack of familiarity with Medicaid-related issues and often relied on SW/FC for information. Next, participants described administrative barriers related to burdensome application and renewal processes, including complex documentation and frequent verifications. Third, administrative barriers are particularly challenging for survivors due to unclear disability criteria, post-treatment changes in disability status, and cognitive limitations that impair survivors’ ability to navigate the system. Fourth, many survivors experience missed renewal deadlines, often due to residential transiency or failure to respond to renewal notifications. Finally, the loss of coverage after age 19 in non-expansion states was a major barrier to continuous coverage. Facilitators of continuous coverage included guidance from knowledgeable staff (e.g., SW, dedicated institutional Medicaid teams) and support from family/caregivers and advocacy organizations. To improve continuous coverage, stakeholders proposed simplifying Medicaid processes, expanding eligibility for young adult survivors, increasing Medicaid navigation resources, and educating survivors early—particularly before transitioning from pediatric care. Some participants recommended universal Medicaid coverage for childhood cancer survivors. Conclusions: Healthcare providers and staff identified multilayered barriers to Medicaid coverage for adult survivors of childhood cancer. Our findings underscore the need for reforms to Medicaid access, enhanced survivor and provider education, and greater investment in financial navigation to ensure equitable, seamless coverage for this underserved population.

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Publication Details

Journal
JCO Oncology Practice
Published
2025-10-01
DOI
https://doi.org/10.1200/op.2025.21.10_suppl.258
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
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article

Healthcare provider and staff perspectives on barriers to Medicaid insurance for childhood cancer survivors.

Xu Ji, Janet R. Cummings, Sharon M. Castellino, James L. Klosky et al.
JCO Oncology Practice
Childhood Cancer Survivors' Quality of Life
article

Healthcare provider and staff perspectives on barriers to Medicaid insurance for childhood cancer survivors.

Xu Ji, Janet R. Cummings, Sharon M. Castellino, James L. Klosky, Shaheen A. Rana, Anjali Khanna
article en

Abstract

258 Background: One in three childhood cancer survivors are enrolled in Medicaid at diagnosis, a population requiring lifelong health insurance to support long-term outcomes. However, knowledge gaps remain regarding modifiable factors to Medicaid coverage for adolescent/young adult (AYA) or adult survivors of childhood cancer. We explored healthcare provider and staff perspectives on barriers and facilitators to continuous Medicaid coverage for this high-need population. Methods: We conducted semi-structured interviews with 22 stakeholders—including oncologists, nurses, social workers (SW), and financial counselors (FC)—who directly care for AYA/adult survivors of childhood cancer. Interviews (~45 minutes) were audio-recorded, transcribed, coded using both deductive and inductive approaches, and compared across practice type. Results: Participants represented 11 cancer centers in Medicaid expansion (55%) and non-expansion (45%) states. Most were female (91%), aged 40–54 (50%), and non-Hispanic White (73%). Practice types included oncologists/nurses (54%) and SW/FC (46%). Five key barriers to continuous coverage emerged. First, many oncologists and nurses reported a lack of familiarity with Medicaid-related issues and often relied on SW/FC for information. Next, participants described administrative barriers related to burdensome application and renewal processes, including complex documentation and frequent verifications. Third, administrative barriers are particularly challenging for survivors due to unclear disability criteria, post-treatment changes in disability status, and cognitive limitations that impair survivors’ ability to navigate the system. Fourth, many survivors experience missed renewal deadlines, often due to residential transiency or failure to respond to renewal notifications. Finally, the loss of coverage after age 19 in non-expansion states was a major barrier to continuous coverage. Facilitators of continuous coverage included guidance from knowledgeable staff (e.g., SW, dedicated institutional Medicaid teams) and support from family/caregivers and advocacy organizations. To improve continuous coverage, stakeholders proposed simplifying Medicaid processes, expanding eligibility for young adult survivors, increasing Medicaid navigation resources, and educating survivors early—particularly before transitioning from pediatric care. Some participants recommended universal Medicaid coverage for childhood cancer survivors. Conclusions: Healthcare providers and staff identified multilayered barriers to Medicaid coverage for adult survivors of childhood cancer. Our findings underscore the need for reforms to Medicaid access, enhanced survivor and provider education, and greater investment in financial navigation to ensure equitable, seamless coverage for this underserved population.

JCO Oncology PracticeVol. 21(10_suppl)
Emory Healthcare (US), Emory University (US), Winship Cancer Institute
Openalex Percentile: Top 60%
Childhood Cancer Survivors' Quality of Life
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