Glioma resource outreach with support: A program to identify and initiate supportive care interventions for unmet needs among adult lower-grade glioma patients

Abstract

Background Lower grade (WHO grade 2-3) gliomas typically affect young and middle-aged adults and exhibit isocitrate dehydrogenase (IDH) mutations. For such patients, symptoms related to the tumor and associated treatment contribute to morbidity and erode quality of life. With improved treatment, better understanding of these effects over time is critically needed. Existing data characterizing unmet needs of lower grade glioma patients is limited and little consensus exists on addressing these needs in clinical practice. Methods In order to better identify and address unmet needs of lower grade glioma patients, focus groups among patients and caregivers were initially conducted among patients treated at a single academic center. A semi-structured interview guide to comprehensively understand unmet needs was then developed. Each patient defined unmet need was categorized into domains through qualitative content analysis. In parallel, a database of established local and regional community-based resources was established, and a dedicated resource specialist provided patient-specific referrals and follow-up. Results 85 patients were interviewed. Median age was 41 years and the median time from tumor diagnosis was 63 months. Approximately 68% had a WHO grade 2 tumor and 60% were off therapy. Qualitative analysis of interview content identified five overarching domains of unmet need: Psychosocial; Neurologic/Cognitive; Lifestyle; Financial; and Other Medical. At least one unmet need was identified by 71% of participants and the most common domains were Psychosocial (40.7%) and Lifestyle (34.9%). Conclusion Our program begins to address frequently unmet survivorship needs of lower grade glioma patients that spanned five major domains. Further research aimed to better define and address unmet needs among these patients is warranted.