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

2021 ◽  
pp. OP.20.00938
Author(s):  
Grace E. McKay ◽  
Anna L. Zakas ◽  
Fauzia Osman ◽  
Cathy Lee-Miller ◽  
Priyanka Pophali ◽  
...  

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.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 218-218
Author(s):  
Grace Eileen McKay ◽  
Amanda Marie Parkes

218 Background: Given the occurrence of cancer during a complex developmental time, adolescent and young adult (AYA) patients have unique psychosocial needs, necessitating supportive care guidelines including National Comprehensive Cancer Network (NCCN) AYA guidelines. We sought to assess compliance with NCCN AYA guidelines and compare to oncology provider identified AYA care needs. Methods: Retrospective chart review was performed on AYA patients (15-39 years) with sarcoma seen at least once in 2019 at the University of Wisconsin (UW), identifying documentation of discussions deemed critical per NCCN AYA guidelines. As per ASCO’s Quality Oncology Practice Initiative certification, we considered a threshold of 75% or higher to be compliant. Compliance was compared with an electronic survey of UW oncology providers regarding AYA patient needs, with items determined to have adequate resources if noted sufficient by >75% of providers. Results: We identified 43 AYA patients with sarcoma. As seen in table, <75% of patients had documentation regarding contraception, fertility, finances, genetics, social work referral and clinical trials indicating non-compliance. Surveys, completed by 38 oncology providers, showed significant discordance between provider’s perception of adequate access to resources and compliance on chart review. Conclusions: Disparities between oncology provider assessment of AYA care needs and lack of documentation of critical components of AYA patient care demonstrates the need for novel tools to evaluate AYA care needs beyond provider assessments. Care needs identified in our study will serve as the basis of an ongoing quality improvement project to better support AYA patients at UW. [Table: see text]


2019 ◽  
Vol 28 (3) ◽  
pp. 477-487 ◽  
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Claire Hulme ◽  
Rocio Rodriguez Lopez ◽  
Adam Glaser ◽  
...  

2021 ◽  
Author(s):  
Kee Kiat Yeo ◽  
Darcy E Burgers ◽  
Katelynn Brodigan ◽  
Karen Fasciano ◽  
A Lindsay Frazier ◽  
...  

Abstract Adolescent and young adult (AYA; ages 15-39) patients represent a population that experiences significant challenges in cancer care and research, exemplified by poorer clinical outcomes as well as unmet psychosocial and reproductive health needs. Despite central nervous system (CNS) tumors being one of the most common malignancies diagnosed in the age group, there is a clear paucity of AYA CNS tumor-specific publications, especially those related to the unique psychosocial and reproductive health needs of this population of patients. In this review, we examine various aspects of AYA oncological care including tumor biology, clinical outcome, clinical trials enrollment rate, site of care, unique psychosocial needs, and oncofertility. We assess the current state of these issues, highlight areas of deficiencies, and outline the steps needed to address these concerns. We emphasize the importance of comprehensive molecular testing as part of the diagnostic work-up, expansion of clinical trial availability, access to psychosocial care and oncofertility expertise, and the development of AYA-specific clinical research to define best practices and advancing care for this population.


2021 ◽  
Vol 19 (9) ◽  
pp. 1079-1109
Author(s):  
Patrick A. Brown ◽  
Bijal Shah ◽  
Anjali Advani ◽  
Patricia Aoun ◽  
Michael W. Boyer ◽  
...  

The NCCN Guidelines for Acute Lymphoblastic Leukemia (ALL) focus on the classification of ALL subtypes based on immunophenotype and cytogenetic/molecular markers; risk assessment and stratification for risk-adapted therapy; treatment strategies for Philadelphia chromosome (Ph)-positive and Ph-negative ALL for both adolescent and young adult and adult patients; and supportive care considerations. Given the complexity of ALL treatment regimens and the required supportive care measures, the NCCN ALL Panel recommends that patients be treated at a specialized cancer center with expertise in the management of ALL This portion of the Guidelines focuses on the management of Ph-positive and Ph-negative ALL in adolescents and young adults, and management in relapsed settings.


2007 ◽  
Vol 1 (2) ◽  
pp. 137-145 ◽  
Author(s):  
Brad J. Zebrack ◽  
Jennifer Mills ◽  
Tammy S. Weitzman

2018 ◽  
Vol 7 (5) ◽  
pp. 612-617 ◽  
Author(s):  
Laura Mitchell ◽  
Seline Tam ◽  
Jeremy Lewin ◽  
Amirrtha Srikanthan ◽  
Carol Heck ◽  
...  

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 21-21
Author(s):  
Anne C. Kirchhoff ◽  
Sapna Kaul ◽  
Mark Fluchel ◽  
Christopher F Parmeter ◽  
Holly Lynn Spraker

21 Background: To evaluate perceived health care quality among a national sample of survivors of adolescent and young adult (AYA) cancer relative to individuals from the general population. Methods: Using the Medical Expenditure Panel Surveys from 2008-2012, we identified 1,163 survivors diagnosed with cancer ages 15-39 who were at least five years from diagnosis and currently ages of 20-64. A comparison group with no history of cancer was created via propensity score matching on sex, age at study, race/ethnicity, census-region, and survey year. Participants with one or more health care visit in the past 12 months were asked to rate health care quality from all providers (0 = worst to 10 = best), which we categorized as low (0-4), moderate (5-7) and high (8-10). Among survivors, we identified factors such insurance and health status associated with health care quality using ordinal logistic regression. Results: Mean time since diagnosis was 18.3 years. A total of 18% of survivors of AYA cancer reported no health care visits in the previous 12 months compared to 25% of the comparison group (p < 0.001). Survivors rated their health care quality lower than the comparison group (low/moderate: 30.8% vs. 22.5%, respectively, p = 0.003). Among survivors, those who were publicly insured (odds ratio (OR) = 0.62, 95% confidence interval (CI): 0.39-0.97, p = 0.04) and uninsured (OR = 0.25, 95% CI: 0.13-0.48, p < 0.001) were more likely to provide lower health care quality ratings than privately insured survivors. Survivors in fair/poor health also reported poorer quality compared to those in excellent/very good/good health (OR = 0.43, 95% CI, p < 0.001). Conclusions: Survivors of AYA cancer reported greater health care use and poorer health care quality compared to individuals without cancer. Our results call for targeted interventions to meet AYA cancer survivors’ health care needs and expectations.


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