Disparities Between Provider Assessment and Documentation of Care Needs in the Care of Adolescent and Young Adult Patients With Sarcoma

Abstract

PURPOSE: Given the occurrence of cancer during a complex developmental time, adolescent and young adult (AYA) patients have unique psychosocial needs that necessitate supportive care, which is optimally provided using National Comprehensive Cancer Network (NCCN) AYA guidelines. We sought to explore compliance with NCCN AYA guidelines and compare with oncology providers' perceptions of AYA care needs. METHODS: Retrospective chart reviews of AYA patients (15-39 years at time of cancer diagnosis) with sarcoma seen at least once in 2019 at the University of Wisconsin identified documentation of discussions deemed critical per NCCN AYA guidelines. As per the ASCO Quality Oncology Practice Initiative certification, we considered a threshold of these factors being discussed 75% of the time or higher to be compliant. Compliance was compared with an electronic survey of University of Wisconsin oncology providers regarding AYA patient needs, with items determined to have adequate resources if noted sufficient by at least 75% of providers. RESULTS: We identified 43 AYA patients with sarcoma. Less than 75% of patients had documentation of discussion of contraception, sexual health, fertility, finances, genetics, social work referral, and clinical trials indicating noncompliance with NCCN guidelines. Surveys, completed by 38 oncology providers, showed significant discordance between providers' perceptions of AYAs' access to resources and providers' documented discussions of supportive care resources. CONCLUSION: Disparities between oncology provider assessment of AYA care needs and documentation of critical components of AYA patient care demonstrate the need for novel tools to evaluate AYA care needs beyond provider assessments.

Disparities in Treatment Satisfaction and Supportive Care Receipt for Young Adult Oncology Patients on the Basis of Residential Location

“…Although satisfaction with available treatments is critical, availability and utilization of supportive care services are also of utmost importance to high-quality care. Consistent with previous studies, 53-57 we found low overall satisfaction with supportive care services and low receipt of such services in all YAs in our study. Given that many YAs noted lack of knowledge regarding these services as a reason for nonuse (79 of 138, 57.2%), deficiencies in informed medical choice may be a significant contributor to these findings.…”

Reply to A. Bertrand et al

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We thank Bertrand et al 1 for their letter in response to our recent publication in JCO Oncology Practice. 2 We agree that the low rates of documentation of discussions including those regarding contraception, sexual health, and fertility preservation are striking and appreciate the added perspective provided by the authors. The data presented in the letter highlight an international need to support care improvement models for adolescents and young adults (AYAs) with cancer.

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Fertility preservation in children and young adults with cancer

“…Gonadal tissue cryopreservation, while still experimental, may be a viable option for many patients in the future. et al [23] who found less than 75% of AYA encounters had documentation of such issues. Korte et al found that although 73% of patients recall counselling on fertility preservation, just over half felt they could make an informed decision on the subject, indicating need for reinforcement and repetition after an initial discussion [24].…”