End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey
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End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey. / Heese, Oliver; Vogeler, Eva; Martens, Tobias; Schnell, Oliver; Tonn, Jörg-Christian; Simon, Matthias; Schramm, Johannes; Krex, Dietmar; Schackert, Gabriele; Reithmeier, Thomas; Nikkhah, Guido; Sabel, Michael; Steiger, Hans-Jakob; Schlegel, Uwe; Löffler, Markus; Weller, Michael; Westphal, Manfred; German Glioma Network.
in: NEURO-ONCOLOGY, Jahrgang 15, Nr. 9, 01.09.2013, S. 1251-6.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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TY - JOUR
T1 - End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey
AU - Heese, Oliver
AU - Vogeler, Eva
AU - Martens, Tobias
AU - Schnell, Oliver
AU - Tonn, Jörg-Christian
AU - Simon, Matthias
AU - Schramm, Johannes
AU - Krex, Dietmar
AU - Schackert, Gabriele
AU - Reithmeier, Thomas
AU - Nikkhah, Guido
AU - Sabel, Michael
AU - Steiger, Hans-Jakob
AU - Schlegel, Uwe
AU - Löffler, Markus
AU - Weller, Michael
AU - Westphal, Manfred
AU - German Glioma Network
PY - 2013/9/1
Y1 - 2013/9/1
N2 - BACKGROUND: The prognosis for glioma remains dismal, and little is known about the final disease phase. To obtain information about this period, we surveyed caregivers of patients who were registered in the German Glioma Network and who died from the disease.METHODS: A questionnaire with 15 items, focusing on medical, logistic, and mental health support and symptom control during the final 4 weeks, was sent to caregivers. For some of the questions, a scale from 1 (inadequate) to 10 (excellent) was used.RESULTS: Of 1655 questionnaires, 605 were returned (36.6%) and evaluated. We found that 67.9% of the patients were taken care of at home for the last 4 weeks; 47.7% died at home, 22.6% died in hospitals, and 19.3% died in hospice facilities. Medical support was provided by general practitioners in 72.3% of cases, by physicians affiliated with a nursing home or hospice in 29.9%, and by general oncologists in 17%. Specialized neuro-oncologists were involved in 6%. The caregivers ranked the medical support with a mean of 7.2 (using a 10-point scale), nursing service with 8.1, and mental health support with 5.5. In 22.9% of cases, no support for the caregivers themselves was offered by medical institutions.CONCLUSIONS: Although these data reflect the caregivers' subjective views, they are useful in understanding and improving current patterns of care. While patients and their caregivers are supported mainly by neuro-oncologists for most of the disease phase, the end-of-life phase is managed predominantly by general practitioners and specialists in palliative care. Close cooperation between these specialties is necessary to meet the specific needs of glioma patients.
AB - BACKGROUND: The prognosis for glioma remains dismal, and little is known about the final disease phase. To obtain information about this period, we surveyed caregivers of patients who were registered in the German Glioma Network and who died from the disease.METHODS: A questionnaire with 15 items, focusing on medical, logistic, and mental health support and symptom control during the final 4 weeks, was sent to caregivers. For some of the questions, a scale from 1 (inadequate) to 10 (excellent) was used.RESULTS: Of 1655 questionnaires, 605 were returned (36.6%) and evaluated. We found that 67.9% of the patients were taken care of at home for the last 4 weeks; 47.7% died at home, 22.6% died in hospitals, and 19.3% died in hospice facilities. Medical support was provided by general practitioners in 72.3% of cases, by physicians affiliated with a nursing home or hospice in 29.9%, and by general oncologists in 17%. Specialized neuro-oncologists were involved in 6%. The caregivers ranked the medical support with a mean of 7.2 (using a 10-point scale), nursing service with 8.1, and mental health support with 5.5. In 22.9% of cases, no support for the caregivers themselves was offered by medical institutions.CONCLUSIONS: Although these data reflect the caregivers' subjective views, they are useful in understanding and improving current patterns of care. While patients and their caregivers are supported mainly by neuro-oncologists for most of the disease phase, the end-of-life phase is managed predominantly by general practitioners and specialists in palliative care. Close cooperation between these specialties is necessary to meet the specific needs of glioma patients.
KW - Adolescent
KW - Adult
KW - Aged
KW - Aged, 80 and over
KW - Brain Neoplasms
KW - Caregivers
KW - Female
KW - Germany
KW - Glioma
KW - Humans
KW - Male
KW - Middle Aged
KW - Questionnaires
KW - Terminal Care
KW - Young Adult
U2 - 10.1093/neuonc/not089
DO - 10.1093/neuonc/not089
M3 - SCORING: Journal article
C2 - 23814266
VL - 15
SP - 1251
EP - 1256
JO - NEURO-ONCOLOGY
JF - NEURO-ONCOLOGY
SN - 1522-8517
IS - 9
ER -