The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: "Lost in Transition" No More
Linendoll, Nadine; Murphy-Banks, Rachel; Barthel, Erin; Bartucca, Lisa; Boehm, Lauren; Welch, Madison; Weidner, Ruth Ann; Parsons, Susan K
Timeliness of Treatment Initiation in Newly Diagnosed Patients With Breast Cancer
Dong, Jinghui; Esham, Kimberly S; Boehm, Lauren; Karim, Sabrina A; Lin, Mingqian; Mao, Daqin; Wang, Fengqing; Fein, Daniel; Wang, Hanyin; Studenmund, Christine; Weidner, Ruth Ann; Noubary, Farzad; Freund, Karen M; Erban, John K; Parsons, Susan K
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/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/CONCLUSIONS: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.
Pleomorphic Xanthoastrocytoma of the Pineal Region in a Pediatric Patient With Neurofibromatosis Type 1 [Case Report]
Hanna, Joshua A; Mathkour, Mansour; Gouveia, Edna E; Lane, JonMark; Boehm, Lauren; Keen, Joseph R; Biro, Erin E; Sulaiman, Olawale A; Bui, Cuong J
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.
Development of Phase-Specific Breast Cancer Survivorship Care Plans
Boehm, Lauren; Weisberg, Tracey; Linendoll, Nadine; Damon, A Circe; Erban, John K; Parsons, Susan K
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
Murphy-Banks, Rachel; Blanch-Hartigan, Danielle; Boehm, Lauren; Hamel, Pauline C; Parsons, Susan K