Ep15.05 an Evidence-based and Person-centered Care Plan for Patients With Primary Malignant Brain Tumor- a Phd Project Protocol
Year: 2025
Type: article
Study design: Study Protocol
Abstract: BACKGROUND Patients with high-grade gliomas (HGG) experience significant physical, psychological, and cognitive symptoms, which can impact their ability to communicate and reduce their quality of life. Additionally, informal caregivers face substantial challenges impacting family dynamics. The high burden and unpredictable course of the disease, combined with the complexity of symptom clusters, make it essential to offer patients with HGG and their families a well-defined care plan (CP). A CP facilitates involvement in shared clinical decision-making processes, and may help inform and empower patients, ultimately improving quality of life and reducing hospital visits. Although effective symptom management is a crucial and integral part of CP, systematic symptom identification followed by information and support are often suboptimal in clinical practice, which may negatively impact patient symptom experience and treatment adherence. To address these challenges, this PhD project plans to develop a person-centered and evidence-based neuro-oncological CP: ‘My NeuroPath,’ tailored to HGG patients and their caregivers’ unique needs. MATERIAL AND METHODS The PhD study (2025-2028) is a three-phase, multi-method, sequential cohort study with the following objectives: 1) A systematic review 2) Establish a NeuroPath Panel of HGG patients and caregivers, 3) Design of the intervention My NeuroPath through an iterative participatory process, 4) Develop a Neuro-Care educational program for health care professionals, and 5) Examine the feasibility and safety of ‘My NeuroPath’ using a multi-methods design, and its potential impact on patients’ quality of life. RESULTS Although yet unavailable, at the EANO meeting, we will share findings related to objectives 1 and 2. Specifically, we will share the systematic review findings, which will be used to support the overall research rationale and the establishment of NeuroPath Panel. CONCLUSION By developing and testing a tailored neuro-oncological CP, we anticipate improving the collaboration between patients, caregivers, and healthcare professionals, thereby ensuring person-centered care with the potential to maintain or improve patients’ quality of life. Furthermore, we envision that the Neuro Care educational program will be useful guidance for healthcare professionals.
Source: Neuro-Oncology
Authors: M Mathiasen, H Pappot, K Piil, A D Nørøxe, F W Boele
Language: English
Topic: Cancer survivorship and care
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W4414799550
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