NeuroPathways: A Novel, Population-Specific Information and Support Intervention for Patients with Newly Diagnosed Primary Malignant Brain Tumors
Sumita Strander1, Alyx Podgurski2, Riley Psenka2, Lara Traeger3, Jennifer Temel4, Deborah Forst5
1Harvard Medical School, 2Massachusetts General Hospital, 3Psychology, 4Medical Oncology, 5Neuro-Oncology, Massachusetts General Hospital
Objective:
To develop a targeted intervention aimed at helping patients with newly diagnosed primary malignant brain tumors (PMBT) process and cope with their diagnosis and illness trajectory.
Background:
Patients with newly diagnosed PMBT contend not only with the physical and emotional impact of their cancer but also with the task of absorbing and assimilating an overwhelming amount of information about their diagnosis and treatment, often in the midst of significant cognitive and communicative deficits. As few resources exist to address these particular challenges, we sought to develop an intervention targeting the specific educational and supportive needs of patients with PMBT.
Design/Methods:
We interviewed patients with recently diagnosed PMBT (n=14) and their caregivers (n=11) to explore their cancer-related experiences and needs. Common themes included difficulties processing information, communicating with loved ones and clinicians, coping with uncertainty, and navigating life with a brain tumor. Drawing on these themes and a prior framework for information and support provision in cancer, we developed the NeuroPathways intervention for patients with newly diagnosed PMBT. With input from our multidisciplinary team, we tailored intervention content and delivery for patients with cognitive and/or communication limitations.
Results:
NeuroPathways consists of two components: 1) a comprehensive but accessible information guide containing details about the diagnosis, treatment modalities, practical aspects of living with a PMBT, coping strategies, and techniques for working through cognitive and communication challenges and 2) four one-on-one coaching sessions with a behavioral health clinician designed to help each patient cultivate a unique plan for learning and coping. We will evaluate feasibility and acceptability of NeuroPathways in a forthcoming pilot study and subsequent randomized controlled trial.
Conclusions:
NeuroPathways represents a novel approach to meeting the information and supportive care needs of patients with newly diagnosed PMBT, with potential application towards helping patients with other life-changing neurologic illnesses absorb and process information about their diagnosis.