Background: Primary brain tumors (PBTs) pose a significant health challenge, affecting patients and their caregivers. While early integration of palliative care (PC) has shown benefits in advanced cancer, its integration for PBT patients, particularly glioblastoma (GBM) patients, remains complex. We hypothesized that our previous PC integration efforts may have failed due to knowledge-gaps and misconceptions among patients, caregivers, and providers.
Objective: This study aimed to identify knowledge gaps and misconceptions about PC among patients with primary brain tumors (PBTs), their caregivers, and their medical providers.
Method: An electronic survey was distributed to PBT patients, caregivers, and medical providers, that included questions regarding PC from the Health Information National Trends Survey (HINTS). Survey responses were analyzed; comparisons were made between the 3 groups as well as the general population.
Results: Of 141 respondents (59 patients, 57 caregivers, and 25 providers), each group held perspectives on PC differing from the general population. While all groups had an improved understanding of PC's role in symptom management, uncertainty persisted among patients and caregivers regarding life-prolonging treatment and certain PC goals like caregiver support or end-of-life care.
Conclusion: Understanding gaps in knowledge and perceptions of PC among PBT patients and caregivers is crucial for effective intervention, with caregivers playing a vital role in advocating for PC. Future research should explore factors influencing these perceptions and development of targeted education to improve early PC referrals for patients with PBTs.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1177/10499091241280610 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Effects of a Behavior Intervention Based on the Recurrence Risk Perception and Behavioral Decision Model for Ischemic Stroke Patients: A Randomized Controlled Trial.
Res Nurs Health
January 2025
School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
Behavioral management is essential to preventing recurrence after stroke, but its adherence is limited worldwide. We aimed to assess the impact of the behavior intervention based on the Recurrence risk perception and Behavioral decision Model for ischemic stroke patients' health behavior. This study was a single-blind, randomized, controlled trial with a 3-month follow-up.
View Article and Find Full Text PDFExit interviews from two randomised placebo-controlled phase 3 studies with caregivers of young children with autism spectrum disorder.
Front Child Adolesc Psychiatry
June 2024
IM Franchise Department, Les Laboratoires SERVIER, Global Value, Access & Pricing, Suresnes, France.
Introduction: Autism spectrum disorder (ASD) is characterised by difficulty with social communication and restricted, repetitive patterns of behaviour. This study aimed to improve understanding of the ASD patient experience with the treatment (bumetanide) regarding the changes in core symptoms and to assess changes considered as meaningful. To achieve this, qualitative interviews were conducted with caregivers of patients in two phase 3 clinical trials (NCT03715153; NCT03715166) of a novel ASD treatment.
View Article and Find Full Text PDFA roadmap toward promoting and improving brain health in Europe and closing the awareness and funding gap.
Eur J Neurol
January 2025
Department of Neurology, Inselspital, University of Bern, Bern, Switzerland.
Background And Purpose: The global burden of neurological diseases exceeds 43.1%, imposing a significant burden on patients, caregivers and society. This paper presents a roadmap to reduce this burden and improve brain health (BH) in Europe.
View Article and Find Full Text PDFEngaging With a Community of Practice in Dementia: Impacts on Skills, Knowledge, Networks and Accessing Support.
Health Expect
February 2025
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK.
Background: To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in-person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders.
View Article and Find Full Text PDFDerivation and validation of a clinical predictive model for longer duration diarrhea among pediatric patients in Kenya using machine learning algorithms.
BMC Med Inform Decis Mak
January 2025
Kenya Medical Research Institute- Center for Global Health Research (KEMRI-CGHR), P.O Box 1578-40100, Kisumu, Kenya.
Background: Despite the adverse health outcomes associated with longer duration diarrhea (LDD), there are currently no clinical decision tools for timely identification and better management of children with increased risk. This study utilizes machine learning (ML) to derive and validate a predictive model for LDD among children presenting with diarrhea to health facilities.
Methods: LDD was defined as a diarrhea episode lasting ≥ 7 days.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!