Assessing Psychosocial and Supportive Care Needs in Patients With Gliomas

Study design

In three neuro-oncological outpatient departments of the three study centers (two of them are university medical centers, one a teaching hospital), glioma patients were assessed between March 2014 and March 2015 using three questionnaires. Due to the infrastructure of the outpatient departments, assessing ment of supportive care needs, HRQoL, and distress, by the questionnaires was performed either with the opportunity of personal support by the study members (group A) or by patients alone (group B).

In group A, a member of the study group (no caregivers) offered help and stayed with the patient the whole time while the patient was filling in the questionnaires. Every patient received an explanation and was offered additional support. If questions occurred or the patient was not able to fill in the questionnaires by him-/herself, the study member helped by answering questions, assisting or describing the questionnaires in detail or even reading out the questions to the patient and filling in the answers which were chosen by the patient. The extent of the assistance by the study members varied depending on the impairment of the patient. Occurrence and details of difficulties in completion were assessed by a feedback form especially developed for this study which was filled in by the member of the study group after completing the instruments. If patients were unable to complete the questionnaires by themselves, the reason for this was documented by the interviewer (e.g. neurocognitive impairment, physical disability, decreased attention span, etc. based and categorized on clinical judgement of the interviewer).

In group B, patients completed the questionnaires on their own. In one study center, Allocation to study groups was randomized in one study center (block randomization independently provided by Institute of Medical Biostatistics, Mainz). Patients in the other two centers were either always group A or always group B.

Furthermore, socio-demographic data, tumor stage, Karnofsky Performance Status (KPS), pre-and postsurgical clinical characteristics (e.g. postoperative tumor remnant, localization of the tumor), and adjuvant therapies were documented.