OS05.4 Optimizing the assessment of psychosocial support and unmet needs in glioma patients and their caregivers in clinical practice - First results of the observational prospective “ERASMUS” Study.
Authors: M. Renovanz, D. Maurer, H. Lahr, E. Weimann, C. Wirtz, F. Ringel, J. Coburger
Journal: Neuro-Oncology (2017)

Objective: To optimize the assessment of received and requested psychosocial support by glioma patients in clinical practice and to assess distress and needs for support of patients’ caregivers. We provide results of the application of a “patients’ perspective questionnaire” (PPQ) applied for the first-time in glioma patients and first results of a caregiver survey. Methods: Patients harboring a glioma were assessed consecutively within their outpatient visits using the Distress Thermometer (DT, score ≥6 indicates significant burden), the EORTC-QLQ-C30+BN20 and the self-administered PPQ: First 9 items assess psychosocial distress by 5 step Likert-scales and respective support requested by patients. Next 10 items survey provided support and its subjective benefit for the individual patient. Last 7 items record support requested currently by patients (e.g. caregiver, physician etc.). In a subgroup, patients’ caregivers were assessed simultaneously by another questionnaire for caregivers developed for the study evaluating, inter alia, quality of life, distress and wish for support. Results: We prospectively enrolled 232 patients. 82% suffered from high-grade gliomas. Mean age was 52 years (range 20–87 yrs.). M:f ratio was1.25:1. Based on PPQ, we observed that 38% (87) of patients felt depressed, 44% (103) were anxious and 39% (91) tense/nervous. According to the results of PPQ, patients with DT ≥6 were significantly more often depressed, anxious and burdened due to the disease (p<0.0001). Only 59% (138) of patients reported to be sufficient informed about disease and therapy. Patients’ reported support was highest among family (75%) and physicians (68%), both classified as helpful in 87%. Only 13% were supported by psychologists, however in 67% it was classified as helpful. Desired further support was highest from physicians (59%), psychologists (19%) and dietitians (15%). 95 caregivers were included, most of them were life partners (64%; n=61). More caregivers (58%) reported DT ≥6 than patients (47%). 19% of those who care for a patient with DT <6, are burdened (DT ≥6, n=17). When patients were undergoing 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). 29% of the caregivers wish for more support from their own relatives and 25% from the physician in charge. Conclusion: Our data show that glioma patients are highly burdened and physicians play a crucial role in these patients’ care. The PPQ showed congruence to DT results and seems to be practicable as it allows evaluating the psychosocial support perceived by the patients, to detect supportive care needs and to provide information to patients and caregivers at a glance. The patients’ needs do not always reflect the caregivers’ situation. Especially caregivers of patients under chemotherapy are burdened.