Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Abstract Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

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Integration of palliative care into the neuro-oncology practice: patterns in the United States

Neuro-Oncology Practice ◽

10.1093/nop/npt004 ◽

2014 ◽

Vol 1 (1) ◽

pp. 3-7 ◽

Cited By ~ 11

Author(s):

Tobias Walbert

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Brain Tumor ◽

End Of Life ◽

Symptom Control ◽

Tumor Patients ◽

Life Phase ◽

Improve Symptom ◽

Oncology Practice

Abstract Background Between 80%–85 percent of all adult brain tumors are high-grade gliomas (HGGs). Despite aggressive treatment with surgical resection, radiotherapy and chemotherapy, the survival of patients with HGG is limited. Brain tumor patients develop unique symptoms and needs throughout their disease trajectory, and the majority lose the ability to communicate during the end-of-life phase. Palliative care (PC) is a proactive and systematic approach to manage issues that are important to patients and families affected by serious illness. The goal is to improve quality of life and symptom control and thereby reduce suffering. Most PC interventions take place during the end-of-life phase; however, newer data suggest that early PC interventions might improve symptom control and quality of life. Methods A literature review focusing on PC, hospice care, and end-of-life care was performed with the aim to describe the integration of PC into neuro-oncology practice. Results Recently there has been increased interest in the effects of PC and brain tumor patients. The origins, methodology, and conceptual models of delivering PC and how it might be applied to the field of neuro-oncology were reviewed. Patterns of referral and utilization in neuro-oncology are described based on the findings of a recent survey. Conclusions Despite a very high symptom burden, many HGG patients do not receive the same level of PC and have fewer interactions with PC services than other cancer populations. Early PC interventions and structured advance-care planning might improve symptom control and quality of life for brain tumor patients.

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Self-care Agency and Quality of Life in Brain Tumor Patients after Surgery

Asian Oncology Nursing ◽

10.5388/aon.2015.15.4.211 ◽

2015 ◽

Vol 15 (4) ◽

pp. 211 ◽

Cited By ~ 6

Author(s):

Sunjoo Boo

Keyword(s):

Quality Of Life ◽

Brain Tumor ◽

Self Care ◽

Tumor Patients ◽

Care Agency

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A Preliminary Report on Quality of Life and Sexual Function in Brain Tumor Patients

Journal of Sexual Medicine ◽

10.1016/j.jsxm.2021.01.171 ◽

2021 ◽

Vol 18 (4) ◽

pp. 737-742

Author(s):

Maria L. Boccia ◽

Elizabeth I. Anyanda ◽

Ekokobe Fonkem

Keyword(s):

Quality Of Life ◽

Brain Tumor ◽

Sexual Function ◽

Preliminary Report ◽

Tumor Patients

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QL-06 * RELIABILITY OF THE SF-36 QUESTIONNAIRE FOR ASSESSMENT OF HEALTH RELATED QUALITY OF LIFE IN NEUROSURGICAL BRAIN TUMOR PATIENTS

Neuro-Oncology ◽

10.1093/neuonc/nou269.6 ◽

2014 ◽

Vol 16 (suppl 5) ◽

pp. v179-v179

Author(s):

A. Bunevicius ◽

S. Tamasauskas ◽

V. P. Deltuva ◽

A. Tamasauskas ◽

R. Bunevicius

Keyword(s):

Quality Of Life ◽

Brain Tumor ◽

Health Related Quality ◽

Tumor Patients ◽

Sf 36 ◽

Related Quality ◽

Health Related

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Gender difference in relation to depression and quality of life among patients with a primary brain tumor

European Psychiatry ◽

10.1016/j.eurpsy.2005.05.008 ◽

2006 ◽

Vol 21 (3) ◽

pp. 194-199 ◽

Cited By ~ 54

Author(s):

Arja Mainio ◽

Helinä Hakko ◽

Asko Niemelä ◽

John Koivukangas ◽

Pirkko Räsänen

Keyword(s):

Quality Of Life ◽

Brain Tumor ◽

Functional Status ◽

Primary Brain Tumor ◽

Karnofsky Performance Scale ◽

Tumor Patients ◽

The Relationship ◽

Depressive Patients ◽

Performance Scale

AbstractObjective. –We studied the relationship between depressive symptoms and quality of life (QOL) as well as functional status in primary brain tumor patients at recurrent measurements. Differences in QOL between depressive and non-depressive samples by gender were controlled for tumor characteristics and patients' psychosocial factors.Materials and methods. –The data consisted of 77 patients with a primary brain tumor, 30 males and 47 females. Depression of the patients was assessed by Beck Depression Inventory (BDI) and Crown-Crisp Experiential Index (CCEI), functional status by Karnofsky Performance scale (KPS) and QOL by Sintonen's 15D before tumor operation as well as at 3 months and at 1 year from surgical operation of the tumor.Results.The level of QOL in females was lower compared to that of males. Depression was the main predictor for worse QOL in the patients at all measurements. Depressive patients with a benign brain tumor had significantly worse QOL versus non-depressive ones.Discussion and conclusion. –Decreased QOL was strongly related to depression, especially among patients with a benign brain tumor. Further studies are needed to find whether sufficient depression therapy improves the QOL of patients.

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