Documentation of Late-Effects Risks and Screening Recommendations for Adolescent and Young Adult Central Nervous System, Soft Tissue, or Bone Tumor Survivors Treated with Radiotherapy in British Columbia, Canada

2019 ◽  
Vol 8 (2) ◽  
pp. 142-148 ◽  
Author(s):  
A. Fuchsia Howard ◽  
Jordan Tran ◽  
Analuisa Aparicio ◽  
Andrea Lo ◽  
Avril Ullett ◽  
...  
Keyword(s):  
Central Nervous System ◽  
British Columbia ◽  
Nervous System ◽  
Young Adult ◽  
Soft Tissue ◽  
Bone Tumor ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Adult Central Nervous System

scholarly journals 01 Adolescent and Young Adult Central Nervous System Tumour Survivors: Documentation of late-effects risks and screening recommendations in British Columbia, Canada

2018 ◽  
Vol 45 (S3) ◽  
pp. S1-S1
Author(s):  
A. Fuchsia Howard ◽  
Jordan Tran ◽  
Avril Ullett ◽  
Michael McKenzie ◽  
Karen Goddard
Keyword(s):  
Primary Care ◽  
Central Nervous System ◽  
Nervous System ◽  
Radiation Therapy ◽  
Young Adult ◽  
Late Effects ◽  
Medical Records ◽  
Primary Care Providers ◽  
Adolescent And Young Adult ◽  
Care Providers

Survivors of adolescent and young adult (AYA) central nervous system (CNS) neoplasms are at risk for late effects (LE) - treatment-related health problems occurring more than 5 years after therapy). Since, in Canada, AYA survivors are usually followed in the community, information must be conveyed to primary care providers to guide risk-based follow-up care. Objective: To assess documentation of LE risks and screening recommendations (SR) in medical records of AYA CNS tumor survivors treated with radiation therapy. Methods: The medical records of all patients diagnosed with a CNS neoplasm (benign or malignant) at ages 15-39 years, treated between 1985 and 2010 in the province of British Columbia, surviving >5 years and discharged to the community were assessed. Documentation of LE and SR were extracted, and analyzed descriptively. Results: Among 132 survivors (52% female), treated with radiation therapy (95% partial brain, 10% craniospinal, 8% partial spine, and 4% whole brain) and chemotherapy (17%), 19% of charts included no documentation of LE risks, 26% included only non-specific documentation, and 55% had minimal documentation (1 or 2 LE). Documentation of at least one specific LE increased from 24% in 1980-1989, to 54% in 1990-1999, to 86% in 2000 – 2010. Based on treatment information, all survivors were at high-risk for LE, such as radiation induced neoplasm, meningioma and cerebrovascular events. Yet, SR were documented in only 25% of charts. Conclusions: The documentation of LE risks and screening recommendations has been limited, highlighting the need to improve written communication with primary care providers.

Factors associated with delays in diagnosis of pediatric, adolescent and young adult patients with central nervous system tumors.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e13532-e13532
Author(s):  
Diane Marie Puccetti ◽  
Lena Winestone ◽  
Jeffrey McPheeters ◽  
Jennifer Jill Wilkes ◽  
Henry J. Henk ◽  
...  
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
Young Adult ◽  
Adolescent And Young Adult ◽  
Urgent Care ◽  
Cns Tumors ◽  
Cancer Symptoms ◽  
Delay In Diagnosis ◽  
Factors Associated ◽  
Delays In Diagnosis

e13532 Background: Central Nervous System (CNS) tumors are the most common solid tumor in children and have the highest mortality. Delays in diagnosis (Dx) may lead to reduced survival. We identify factors associated with delays in Dx in pediatric, adolescent and young adult (AYA) patients with CNS tumors. Methods: A retrospective cohort from the OptumLabs Data Warehouse, which includes claims data for privately insured enrollees in a large US health plan, was identified. Patients diagnosed with CNS tumors between 2001-17 continuously enrolled 6 months prior to diagnosis (Dx) were included. The onset of cancer symptoms was identified by the date of the first encounter associated with cancer symptoms. Time to Dx was calculated as the days between cancer symptom onset and Dx date. The likelihood of presenting with symptoms and the time to Dx (among those with symptoms) was modeled using logistic regression and included sociodemographic and clinical factors. A delay in Dx was defined as > 3 months after a symptom. Results: We identified 6,627 eligible patients, 5,637 (85%) of whom presented with symptoms prior to Dx. Likelihood of a delay appears greatest in those first presenting to a specialist (OR 1.28 vs PCP; P = .24 ) but lowest in those presenting to Urgent care/ER (OR .56 vs PCP; P < 0.001) and was greatest among children < 5 years of age were more likely to present with a symptom (table). However, among those with a symptom, children < 5 had the longest time to Dx (Median 122 days). Males were less likely to present with a symptom prior to Dx (OR .80, P = 0.040) and when experiencing a symptom they experienced shorter time to Dx compared to females (Median 85 vs 110 days). Race, income, and census region were not significant predictors of either likelihood of presenting with symptoms or delay in time to Dx. Conclusions: This study indicates that young children < 5 years had a longer delay in diagnosis compared to older patients. [Table: see text]

Perceptions of Young Adult Central Nervous System Cancer Survivors and Their Parents Regarding Career Development and Employment

2014 ◽  
Vol 28 (3) ◽  
pp. 158-168 ◽  
Author(s):  
David R. Strauser ◽  
Stacia Wagner ◽  
Fong Chan ◽  
Alex W. K. Wong
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
Young Adults ◽  
Young Adult ◽  
Career Development ◽  
Cancer Survivors ◽  
Psychosocial Treatment ◽  
Adult Central Nervous System ◽  
Central Nervous System Cancer ◽  
Nervous System Cancer

Purpose: Identify barriers to career development and employment from both the survivor and parent perspective.Method: Young adult survivors (N = 43) and their parents participated in focus groups to elicit information regarding perceptions regarding career development and employment.Results: Perceptions of both the young adults and parents indicate that there is a significant need for comprehensive career and employment services targeted for young adult central nervous system cancer survivors.Conclusions: Findings provide initial evidence and support for the need to incorporate career and vocational services into psychosocial treatment programs. More research is needed in this area to gain an understanding of the specific career and vocational needs and to further explore how the interaction between the young adults and their parents impact vocational outcomes.

scholarly journals Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

2017 ◽  
Vol 50 ◽  
pp. 150-157 ◽  
Author(s):  
Judy Y. Ou ◽  
Holly Spraker-Perlman ◽  
Andrew C. Dietz ◽  
Rochelle R. Smits-Seemann ◽  
Sapna Kaul ◽  
...  
Keyword(s):  
Young Adult ◽  
Soft Tissue ◽  
Soft Tissue Sarcoma ◽  
Bone Tumor ◽  
Adolescent And Young Adult ◽  
Conditional Survival ◽  
Tumor Patients
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