Delivery of guideline concordant care for AYAs with cancer in a statewide population-based cohort.
117 Background: Cancer among adolescents and young adults (AYAs) is rising; the current prevalence is over 2 million in the US. Recognizing that AYAs face unique needs and challenges, NCCN clinical practice guidelines were created to enhance care for this population. Evidence on the delivery of these guidelines to AYAs is limited but suggests variable adherence. We sought to characterize the current landscape of guideline concordant care receipt among AYAs. Methods: We conducted a cohort study based on linkage of the North Carolina Central Cancer Registry data (2003 – 2019) with public and select private payer claims data (2002-2020) across NC. Using descriptive statistics and multivariate modified Poisson regression, we evaluated receipt of guideline concordant care among AYAs aged 15-39 diagnosed with seven of the most common AYA cancers between 2003-2020. Guideline concordance was evaluated through three measures that could be readily ascertained from insurance claims data and captured key domains of AYA care: fertility support (constituting counseling or preservation), mental health care, and palliative care. Our analyses examined receipt of these three elements across clinical and sociodemographic characteristics. Results: We identified 4,696 patients between the ages of 15-39 in North Carolina who met inclusion criteria. Only 13.9% of patients had documented receipt of fertility support, this dropped to 1.6% if GnRH agonists were excluded. 36.7% received mental health care; 41.1% received palliative care. In adjusted analyses (Table), fertility support was more likely for patients in their 20s, and less likely for Black or Medicaid-insured patients. Mental health care was less common among male, Black, and Hispanic patients. Palliative care was more frequent among Medicaid-insured patients, those with non-localized stages of disease at presentation, and patients with leukemia, lymphoma or sarcoma. Conclusions: There was significant variability in receipt of three key elements of guideline concordant AYA cancer care, with notable disparities by race and insurance type. These findings highlight the need for research and care delivery efforts to improve outcomes for this vulnerable population. Adjusted risk ratios for factors associated with receipt of guideline concordant care. Fertility Support Mental Health Care Palliative Care Variable (referent) aRR aRR aRR Race/Ethnicity(NHW) Non-Hispanic Black 0.33* 0.62* 1.00 Hispanic 1.40 0.65* 0.91 Age Group(30-39) 13-19 1.74 1.01 1.13 20-29 3.33* 0.94 1.03 Location(Urban) Rural 0.60 0.92 1.04 Insurer(Private) Medicaid 0.20* 2.05* 1.76* Stage (Localized) Regionalized 0.86 0.93 1.36* Distant 0.83 1.02 1.72* Cancer type(Breast) Leukemia 0.89 1.14 1.44* Lymphoma 1.28 1.05 1.35* Melanoma 0.00 0.78* 0.82 Sarcoma 0.86 1.07 1.95* Testes (germ) 0.99 0.90 1.14
Authors
- Jacob Stein (ORCID: https://orcid.org/0000-0002-2082-2760)
- Emily R. Haines (ORCID: https://orcid.org/0000-0001-7208-5937)
- Jennifer L. Lund (ORCID: https://orcid.org/0000-0002-1108-0689)
- Alison Manikowski (ORCID: https://orcid.org/0000-0002-2601-7789)
- Nicole M. Knape (ORCID: https://orcid.org/0000-0002-4718-4842)
- Katherine Elizabeth Reeder-Hayes (ORCID: https://orcid.org/0000-0001-6903-0177)
- Hannah Clark Winslow (ORCID: https://orcid.org/0000-0002-0949-1913)
- John Hunt (ORCID: https://orcid.org/0000-0002-4962-8750)
- Catherine Habashy (ORCID: https://orcid.org/0000-0003-3250-7220)
- Andrew Brian Smitherman (ORCID: https://orcid.org/0000-0002-1059-3853)
- Kyungsu Kim (ORCID: https://orcid.org/0000-0001-8585-0773)
- Christopher D. Baggett
Institutions
- University of North Carolina at Chapel Hill (US)
- University of North Carolina Health Care (US)
- Wake Forest University (US)
Publication Details
- Journal
- JCO Oncology Practice
- Published
- 2025-10-01
- DOI
- https://doi.org/10.1200/op.2025.21.10_suppl.117
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 0.00