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Published on: February 16, 2015
Early Palliative Care in Patients with Glioblastoma: Co-Design of an Integrated Care Pathway
Esmée K J van der Poort1, Monique C M Baas-Thijssen1, Marleen Oomes2
1Department of Neurology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands.
Abstract:
Background: Glioblastoma is an incurable form of brain cancer with a median overall survival of 1.5 years. Despite its progressive nature and high symptom burden, palliative care is not consistently integrated in routine glioblastoma care. Early integration of palliative care better addresses the needs of patients and caregivers, improves quality of life, and reduces inappropriate care in the end-of-life phase. This study aims to design an integrated care pathway to support the early integration of palliative care for patients with glioblastoma. Methods: We used a design thinking approach, engaging stakeholders from neuro-oncology, specialist palliative care, primary care, district nursing, healthcare administration, health insurance, health economics, and patient advocacy. The process consisted of thirteen informal interviews (with healthcare professionals, patients, and caregivers), six expert meetings, and two workshops. Results: First, we mapped existing routine glioblastoma care and identified perceived barriers to early palliative care integration, including variations in advance care planning (ACP) timing, clinicians' hesitation, unclear referral criteria to specialist palliative care, suboptimal care coordination, and limited experience with glioblastoma in the primary care setting. Second, iterative prototyping led to the development of a care pathway with key components: initiation of ACP by the lead clinician within six weeks of diagnosis, integrated multidisciplinary team meetings for complex cases, ongoing coordination, clear referral triggers for specialist palliative care, and structured caregiver care. Conclusions: The co-designed pathway provides a feasible model for integrating early palliative care into routine care for patients with glioblastoma. Future steps include implementation and evaluation of the care pathway and development of a payment model.
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