Preference of Young Adult Cancer Survivors for In-Person Versus Telemedicine Cancer Survivorship Visits.

Young adult (YA) cancer survivors face barriers to follow-up care, which can be exacerbated by living in a rural location. Telemedicine may mitigate these barriers, but little is known about the preferences of YA survivors for telemedicine or in-person survivorship visits. We surveyed 57 YA cancer survivors in a rural state to assess their preference for survivorship visits. Forty-six percent of respondents preferred an in-person visit while 16% preferred telemedicine. The remaining 39% reported "it depends" or were undecided. In-person visits were preferred when stratified by rural versus urban location. This work can be used to inform survivorship delivery systems.

Cerebellar pleomorphic xanthoastrocytoma in the setting of neurofibromatosis type-I: Does it portend a different prognosis? A case report and systematic review.

BACKGROUND: Pleomorphic xanthoastrocytoma (PXA) is a rare brain tumor occurring supra- and infra-tentorially in both young adults and children. PXA is a benign tumor with a favorable prognosis. It is not traditionally considered as a neurofibromatosis type 1 (NF-1)-associated lesion, and its prognosis remains largely unknown, on the contrary to non-NF-1 PXA tumors. OBJECTIVE: Herein, we present a rare case of cerebellar PXA in a patient with NF-1 and performed systematic review of NF-1-associated PXA. METHOD: We present a case of NF-1-associated PXA arising in the cerebellar region. We also reviewed the literature in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to identify published cases of cerebellar vs. non-cerebellar NF-1-associated PXA and NF1 vs. non-NF1 PXAs, highlighting their management paradigm, prognosis, and outcomes. RESULT: Our systematic review yielded only four previously reported cases of NF-1-associated PXAs in the cerebellar region. Our review suggests that infratentorial PXAs have a higher recurrence and lower survival rates than non-cerebellar NF-1-associated PXAs and non-NF1 PXAs in general. CONCLUSION: Early and precise diagnosis is important for these lesions with the aid of imaging features, histology, immunohistochemistry, and genetic markers. Surgical resection with goal of GTR remains the mainstay management strategy for PXA, with adjuvant therapy usually reserved for anaplastic or malignant lesions. The identification of BRAF-V600E mutation and role of BRAF inhibitors hold promise as a diagnostic tool and treatment modality, respectively, for PXAs, and their relationship to NF-1 is worth further exploration.

The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: "Lost in Transition" No More.

Purpose: The Reid R. Sacco AYA Cancer Program set out to improve survivorship care for AYA-aged patients (15-39 years) of pediatric or AYA cancer. This article discusses the steps in establishing the clinic, including the creation of a database on cancer history, exposures, and attendant risks of late effects. Results from the database tell the broader story of AYAs who seek care within a dedicated survivorship clinic. Methods: The database was created with REDCap® (Research Electronic Data Capture), a secure web-based, HIPAA compliant application for research and clinical study data. Data were abstracted and analyzed by trained members of the program team. Results: A total of 144 patients were seen for their initial survivorship visit between January 2013 and September 2019. Regarding physical health, two-thirds of the patients presented with an established late effect, one third with an established medical comorbidity, and 11% (n = 16) with secondary cancer related to their oncologic treatment. In assessing mental health, a significant cohort reported a known affective disorder (32%, n = 46) with one quarter already taking a psychotropic medication. Despite the transient nature of AYAs, 85% of patients remained in care within the long-term follow-up clinical model. Conclusions: Data presented illustrate how multilayered and complex survivorship care needs can be, as patients enter the clinic with complicated pre-existing psychosocial issues, significant late effects, and comorbidities. This study reinforces the value of a clinical database to better understand AYA survivors with the ultimate goal of optimizing and coordinating care.

Pleomorphic Xanthoastrocytoma of the Pineal Region in a Pediatric Patient With Neurofibromatosis Type 1.

Background: Pleomorphic xanthoastrocytoma (PXA) is a rare and often focal glioma that most commonly affects children and young adults. Lesions are preferentially supratentorial and superficial, although infratentorial masses have been described, along with occasional involvement of the leptomeninges. The World Health Organization (WHO) categorizes these tumors as grade II, with surgical resection carrying a favorable prognosis. However, these tumors may undergo malignant degeneration and must be identified for appropriate treatment and prognosis. PXA has been associated with neurofibromatosis type 1 (NF1), although it is not the classic phenotype of NF1. We present a novel report of PXA, atypically located in the pineal region of a patient with a history of NF1. Case Report: A 17-year-old male with a history of NF1 presented with 1 month of bifrontal headaches. Magnetic resonance imaging was significant for a heterogeneous tectal mass, suspicious for a glioma extending to the fourth ventricle and causing displacement of the cerebral aqueduct without obstructive hydrocephalus. Following an infratentorial-supracerebellar approach for tumor resection, histopathology confirmed a low-grade variable neoplasm consistent with PXA. Postoperative imaging confirmed gross total resection with no evidence of recurrence at 9 months postoperatively. Conclusion: To our knowledge, this case is the fifth report of pineal PXA and the first associated with NF1. Because PXA presents similarly to other NF1-related intracranial tumors, careful diagnosis via immunohistochemistry is imperative. Gross tumor resection is usually curative; however, PXA has the propensity to undergo malignant degeneration and may require adjuvant treatment.

Timeliness of Treatment Initiation in Newly Diagnosed Patients With Breast Cancer.

BACKGROUND: Evidence-based timeliness benchmarks have been established to assess quality of breast cancer care, as delays in treatment are associated with poor clinical outcomes. However, few studies have evaluated how current breast cancer care meets these benchmarks and what factors may delay the timely initiation of treatment. PATIENTS AND METHODS: Demographic and disease characteristics of 377 newly diagnosed patients with breast cancer who initiated treatment at Tufts Medical Center (2009-2015) were extracted from electronic medical records. Time from diagnosis to initial surgery and time from diagnosis to initiation of hormone therapy were estimated with Kaplan-Meier curves. Multivariable regression analysis was used to identify factors associated with treatment delays. Thematic analysis was performed to categorize reasons for delay. RESULTS: Of 319 patients who had surgery recommended as the first treatment, 248 (78%) met the 45-day benchmark (median, 28 days; 25th-75th %, 19-43). After adjusting for potential confounders, multivariable regression analysis revealed that negative hormone receptor status (odds ratio, 3.48; 95% confidence interval, 1.44-8.43) and mastectomy (odds ratio, 4.07; 95% confidence interval, 2.10-8.06) were significantly associated with delays in surgery. Delays were mostly owing to clinical complexity or logistical/financial reasons. Of 241 patients eligible for hormone therapy initiation, 232 (96%) met the 1-year benchmark (median, 147 days; 25th-75th %, 79-217). CONCLUSION: Most patients met timeliness guidelines for surgery and initiation of hormone therapy, although risk factors for delay were identified. Knowledge of reasons for breast cancer treatment delay, including clinical complexity and logistical/financial issues, may allow targeting interventions for patients at greatest risk of care delays.

Development of Phase-Specific Breast Cancer Survivorship Care Plans.

INTRODUCTION: Phase-specific survivorship care plans (SCPs) have the potential to be powerful tools in providing individualized, comprehensive survivorship care, particularly in terms of care coordination and transition, if used as dynamic documents. MATERIALS AND METHODS: We designed an initial follow-up care plan (FCP) to be used at the conclusion of curative therapy, as well as distinct, phase-specific FCPs for periodic use at 5-year and 10-year time points in the survivorship course. These FCPs incorporate the 4 essential components of survivorship care outlined by the Institute of Medicine: prevention, surveillance, intervention for consequences of cancer treatment, and coordination among health care providers. RESULTS: Phase-specific SCPs were designed by a multidisciplinary team with expertise in breast health, survivorship, and cancer care delivery across diverse practice settings. The FCPs were formulated to align with national guidelines and emergent, peer-reviewed literature, and reflect evolving recommendations regarding the duration of adjuvant hormone therapy. The SCPs were pilot-tested and successfully integrated into the existing work flow of the electronic medical records at each practice site. CONCLUSION: Phase-specific SCPs were developed to incorporate new knowledge about evolving treatment recommendations, screening guidelines, and updated genetic information to encourage timely discussions relevant to the specific stage of survivorship.

Personal Narrative: Raising Awareness of Adolescent and Young Adult Cancer Survivors in Similarly Aged University Students.

Purpose: As part of a programmatic educational initiative, we developed a personal narrative presentation, embedded with evidence-based data, to raise awareness of adolescents and young adults (AYAs) who have been diagnosed with cancer between the ages of 15 and 39 years among similarly aged university students. The narrative encompassed the cancer care continuum from signs of the disease through survivorship and incorporated psychosocial aspects of the experience. Methods: The presenter, diagnosed with lymphoma at the age of 25 years in 2007, interwove AYA data with her narrative in a series of 26 invited lectures given over 2 academic years, 2016-2017 and 2017-2018. Students were asked to provide anonymous open-ended feedback. Six hundred thirteen forms were collected and retrospectively dually coded and analyzed. Results: The majority of students (97%) referenced at least one of the presentation's three objectives: (1) build awareness of the AYA demographic; (2) encourage a personal health care focus; and (3) expand awareness of the far-reaching impact of cancer (i.e., psychological, social, and medical) both during and beyond the treatment phase. Format- and/or content-related suggestions and potential benefits of hearing the narrative also were reported. Conclusion: The use of personal narrative to raise awareness of the AYA cancer experience in an academic setting is both feasible and effective. Students demonstrated a new or enhanced understanding of AYA cancer and its biopsychosocial implications. We provide evidence to inform the design of awareness interventions directed at similarly aged university students.