gms | German Medical Science

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.