Bettina Seekatz1,2, Matthias Lukasczik3, Mario Löhr4, Katja Ehrmann5,3, Michael Schuler3, Almuth F Keßler4, Silke Neuderth6, Ralf-Ingo Ernestus4, Birgitt van Oorschot5. 1. Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany. b.seekatz@uni-wuerzburg.de. 2. Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany. b.seekatz@uni-wuerzburg.de. 3. Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany. 4. Department of Neurosurgery, University Hospital Würzburg, Würzburg, Germany. 5. Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany. 6. Faculty of Applied Social Sciences, University of Applied Sciences Würzburg-Schweinfurt, Würzburg, Germany.
Abstract
PURPOSE: Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC). METHODS: Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs. RESULTS: The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC. CONCLUSIONS: Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.
PURPOSE:Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC). METHODS: Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs. RESULTS: The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC. CONCLUSIONS: Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.
Authors: David Hui; Omar Shamieh; Carlos Eduardo Paiva; Pedro Emilio Perez-Cruz; Jung Hye Kwon; Mary Ann Muckaden; Minjeong Park; Sriram Yennu; Jung Hun Kang; Eduardo Bruera Journal: Cancer Date: 2015-06-08 Impact factor: 6.860
Authors: Diana Zwahlen; Niels Hagenbuch; Margaret I Carley; Christopher J Recklitis; Stefan Buchi Journal: Psychooncology Date: 2008-10 Impact factor: 3.894
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