The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease

Ashlee R Loughan; Morgan Reid; Kelcie D Willis; Sarah Barrett; Karen Lo

doi:10.1093/nop/npac067

The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease

Neurooncol Pract. 2022 Sep 7;10(1):71-78. doi: 10.1093/nop/npac067. eCollection 2023 Feb.

Authors

Ashlee R Loughan^{1

2}, Morgan Reid³, Kelcie D Willis^{2

3}, Sarah Barrett¹, Karen Lo¹

Affiliations

¹ School of Medicine, Virginia Commonwealth University, Richmond, Virginia, USA.
² Massey Cancer Center, Richmond, Virginia, USA.
³ Department of Psychology, Virginia Commonwealth University, Richmond, Virginia, USA.

Abstract

Background: To achieve patient-centric quality care in neuro-oncology, all aspects of the disease and its impact on quality survival need to be considered. This includes the psychological consequences of a brain tumor diagnosis and subsequent life-altering experiences. Far too often the voice of our patients is unheard. Empowering patients to advocate for their own psychological needs is essential.

Methods: Data were derived from four focus groups with adult patients with brain tumors (N = 15; M _age = 46 years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients' care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on the quality of life and distress reduction. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (M _kappa = 0.92, range = 0.85-0.93) was achieved. Two themes are presented here: Emotional Response to Stressors and Existential Considerations.

Results: Of the two themes presented, 14 codes emerged. Codes were classified into three broad categories: Fear, Despair, and Resilience. The frequency of each category ranged from 31.4% to 34.7%. Example quotes and a discussion of each category follows.

Conclusions: It is imperative that we include the patient perspective in the development of neuro-oncology programs, thereby considering the quality of survival in addition to quantity. Neuro-oncology quality care must be driven by our patients' experiences and should integrate support for emotional distress while promoting resilience throughout this life-threatening illness.

Keywords: brain tumor; despair; fear; quality of life; resilience.

© The Author(s) 2022. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.