gms | German Medical Science

68th Annual Meeting of the German Society of Neurosurgery (DGNC)
7th Joint Meeting with the British Neurosurgical Society (SBNS)

German Society of Neurosurgery (DGNC)

14 - 17 May 2017, Magdeburg

The proxy's view: The Family Situation, Psychosocial Burden and Needs for Support in 95 Caregivers of Patients with Gliomas assessed in an outpatient Setting

Meeting Abstract

  • Dorothea Maurer - Neurochirurgische Klinik, Universitätsmedizin Mainz, Mainz, Deutschland
  • Elke Weimann - Neurologische Klinik, Klinikum Ludwigsburg, Ludwigsburg, Deutschland
  • Christoph Richter - Neurochirurgische Klinik, Universitätsmedizin Mainz, Mainz, Deutschland
  • Christian Rainer Wirtz - Neurochirurgische Klinik, Universitätsklinikum Ulm, Ulm, Deutschland
  • Florian Ringel - Neurochirurgische Klinik, Universitätsmedizin Mainz, Mainz, Deutschland
  • Jan Coburger - Neurochirurgische Klinik, Universitätsklinikum Ulm, Ulm, Deutschland
  • Mirjam Renovanz - Universitätsmedizin Mainz, Neurochirurgische Klinik, Mainz, Deutschland

Deutsche Gesellschaft für Neurochirurgie. Society of British Neurological Surgeons. 68. Jahrestagung der Deutschen Gesellschaft für Neurochirurgie (DGNC), 7. Joint Meeting mit der Society of British Neurological Surgeons (SBNS). Magdeburg, 14.-17.05.2017. Düsseldorf: German Medical Science GMS Publishing House; 2017. DocMi.22.04

doi: 10.3205/17dgnc515, urn:nbn:de:0183-17dgnc5159

Published: June 9, 2017

© 2017 Maurer et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at



Objective: The prognosis for high-grade glioma patients remains poor. Little is known about the situation of their caregivers. We surveyed patients’ caregivers in an outpatient setting in order to assess their levels of distress and needs for support.

Methods: In a multicentre outpatient setting patients and their caregivers were assessed at the same time. A questionnaire developed for the study and focusing on quality of life, distress and supportive care needs, was completed by caregivers. Amongst others, the questionnaire assessed quality of life, level of distress and wish for support. Simultaneously, the glioma patients were assessed using questionnaires measuring quality of life (EORTC QLQ-C30+BN20), psycho-oncological distress (Distress Thermometer, DT, a score ≥6 indicates significant burden). Socio-demographic factors and clinical data were collected, and associations between situation of patients and their caregivers were performed.

Results: Of 123 included patients (92%, n=113 harboring a high-grade glioma), 95 caregivers completed the questionnaires. The patients’ age was 56 years (SD +/- 14.8, range 19-84). Most of the caregivers (64%; n=61) were life partners. The caregivers’ DT mean was higher than the DT mean of the patients (caregivers: DT=5.9, SD=2.5 vs. patients: DT mean=5.3, SD=2.4). Similarly, more caregivers (58%) reported significant distress (DT ≥6) than patients (47%, n=37). 28% (n=26) of caregivers supporting a patient with DT ≥6 or more are also stressed (n=26). However, 19% of those who care for a patient with DT<6, are burdened (DT ≥6, n=17). In total, of 29 patients reporting family problems, 59% had a caregiver with a DT ≥6 (n=17). When patients were under chemotherapy, their caregivers indicated significantly more often DT ≥6 than the patients themselves (patients: 33%, n=13, vs. caregivers 59%, n=23, p=0.02, Fishers’ exact). 28% (n=26) of the caregivers indicate a moderate and 14% (n=13) indicate a poor quality of life. Emotional problems are reported by 64% of the patients (n=61), 61% of their caregivers state a DT ≥6 (n=37). 29% of the caregivers wish for more support from their own relatives and 25% wish for more support from the doctor in charge.

Conclusion: Although these data reflect the caregivers’ subjective views, it has to be taken into account that not only the needs of the glioma patients themselves but also those of their caregivers should be assessed and support provided adequately as the patients’ needs and burden do not always reflect the caregivers situation. Especially caregivers of patients under chemotherapy are burdened.