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

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

Ashlee R Loughan  1   2 , Morgan Reid  3 , Kelcie D Willis  2   3 , Sarah Barrett  1 , Karen Lo  1
Affiliations

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

Ashlee R Loughan et al. Neurooncol Pract. .

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.

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Figures

Fig. 1
Fig. 1
The emotional journey of a brain tumor patient.
See this image and copyright information in PMC

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