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The burden of a brain tumor: guiding patient centric care in neuro-oncology

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Abstract

Purpose

Brain tumor patients report an overwhelming sense of uncertainty when navigating the course of their terminal disease. Historically, organizational experts and/or treating physicians have established neuro-oncology programs. However, given the disease burden and incurable nature of current medical treatments, patient-centric care should be prioritized alongside institutional and academic objectives. Integrating patient perspectives into interdisciplinary programmatic development can improve comprehensive care and empower patients to advocate for their own quality healthcare needs.

Methods

Data was derived from four focus groups with adult brain tumor patients (N = 15; Mage = 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 quality of life and psychological distress reduction for both patients and their loved ones. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (Mkappa = 0.92, range= 0.85–0.93) was achieved.

Results

Six distinct themes emerged, where the frequency of each theme ranged from 12.5 to 23.3%. Specifically, patients discussed relational concerns, navigation of interdisciplinary care, neurobehavioral impacts, emotional responses to stressors, existential concerns, and caregiver support. A discussion of themes follows.

Conclusions

It is imperative that we include the patient perspective in the development of neuro-oncology programs; considering the quality of survival in addition to quantity. Neuro-oncology quality care themes identified were relational concerns, navigating interdisciplinary care, neurobehavioral impact, emotional response to stressors, existential concerns, and caregiver support. A paramount concentration for comprehensive neuro-oncology programs must include patients’ quality needs.

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Acknowledgements

Thank you to our patients who shared their voice on quality care in neuro-oncology

Funding

Funding was provided by Massey Cancer Center.

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Authors and Affiliations

  1. Division of Neuro-Oncology, Department of Neurology, VCU Massey Cancer Center, Virginia Commonwealth University, School of Medicine, 1201 East Marshall St, Richmond, VA, 23298-0037, USA

    Ashlee R. Loughan

  2. VCU Massey Cancer Center, Richmond, VA, USA

    Ashlee R. Loughan

  3. Department of Psychology, Virginia Commonwealth University, Richmond, VA, USA

    Morgan Reid, Kelcie D. Willis & Alexandria Davies

  4. Department of Psychiatry and Behavioral Medicine, Rush University Medical Center, Chicago, IL, USA

    Rachel L. Boutté

  5. Virginia Commonwealth University, School of Medicine, Richmond, VA, USA

    Ashlee R. Loughan, Sarah Barrett & Karen Lo

Authors
  1. Ashlee R. Loughan
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  2. Morgan Reid
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  3. Kelcie D. Willis
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  4. Alexandria Davies
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  7. Karen Lo
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Contributions

ARL initiated project conceptualization. ARL and RLB managed methodology. All authors contributed to study analysis. All authors contributed to original writing and ARL, MR, KDW, RLB completed final editing. All authors reviewed the manuscript. ARL secured project funding.

Corresponding author

Correspondence to Ashlee R. Loughan.

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Loughan, A.R., Reid, M., Willis, K.D. et al. The burden of a brain tumor: guiding patient centric care in neuro-oncology. J Neurooncol 157, 487–498 (2022). https://doi.org/10.1007/s11060-022-03993-x

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  • DOI: https://doi.org/10.1007/s11060-022-03993-x

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