The burden of a brain tumor: guiding patient centric care in neuro-oncology
- 08.04.2022
- Research
Erschienen in:
- Verfasst von
- Ashlee R. Loughan
- Morgan Reid
- Kelcie D. Willis
- Alexandria Davies
- Rachel L. Boutté
- Sarah Barrett
- Karen Lo
- Erschienen in
- Journal of Neuro-Oncology | Ausgabe 3/2022
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.
Anzeige
- Titel
- The burden of a brain tumor: guiding patient centric care in neuro-oncology
- Verfasst von
-
Ashlee R. Loughan
Morgan Reid
Kelcie D. Willis
Alexandria Davies
Rachel L. Boutté
Sarah Barrett
Karen Lo
- Publikationsdatum
- 08.04.2022
- Verlag
- Springer US
- Erschienen in
-
Journal of Neuro-Oncology / Ausgabe 3/2022
Print ISSN: 0167-594X
Elektronische ISSN: 1573-7373 - DOI
- https://doi.org/10.1007/s11060-022-03993-x
Dieser Inhalt ist nur sichtbar, wenn du eingeloggt bist und die entsprechende Berechtigung hast.
