A Pilot Study to Quantify and Describe Personal Social Networks in Patients with Glioblastoma

Abstract Background Patients with glioblastoma experience high physical and psychosocial symptom burden. Poor social relationships have been shown to increase the risk of neurologic illnesses and decline, and conversely, strong personal social networks (PSN) have been shown to reduce the risk of mortality and improve quality of life. The aim of this pilot study is to determine the feasibility of measuring PSN in glioblastoma patients. Methods We recruited 25 adult glioblastoma patients between the initial diagnosis and the first cycle of adjuvant chemotherapy from March to September 2023 in the outpatient neuro-oncology clinic and adapted PERSNET, a quantitative PSN assessment tool, to this population. We collected demographics, tumor measures, treatment courses, and the European Organization for Research and Treatment of Cancer QOL for Patients with Brain Tumors (EORTC QLQ-BN20) and conducted qualitative interviews. Results The average age was 64.5 years old, 56% were female, and 84% had a Karnofsky Performance Status of 70 or higher. Patients had large network sizes (total size of patient’s PSN; mean = 8.8). Participants stressed the importance of social support and how different people filled different roles in their oncology care. Behavioral and/or cognitive changes resulted in delayed presentation, and children, especially daughters, were important in advocating for presentation to the hospital. Conclusion This is the first proof-of-concept study showing that PSN can be measured in patients with glioblastoma. Qualitative data showed that patients felt social support was very important, and different people in their networks addressed different domains of care: physical, emotional, and logistical.