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RESEARCH PRODUCT

P01.039 Development of signaling questions assessing distress and quality of life in glioma patients - Results of 50 interviews and an expert analysis

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BACKGROUND: Due to cognitive or physical limitations, glioma patients might not be able to validly complete self-reporting tools assessing quality of life, distress, and unmet needs. This not only impairs individual patient care and therapy monitoring but also creates bias in studies applying patient reported outcome measures (PROMs). In our study, we searched for signaling questions implementable in patient-doctor consultations in order to optimize the assessment. METHODS: We performed 1) a literature research to find out the most important questions for glioma patients that are also covered by standard questionnaires. 2) After a pretest in n=10 patients, we performed structured interviews in n=50 patients in an outpatients setting and 3) an online expert survey. Inclusion criteria for the patients were cerebral glioma, understanding German language and legal capacity, exclusion criterion was aphasia. Patients and experts estimated the most important items and questions of psychosocial topics on a Likert scale (0–6). Patients responded to whether the item afflicted them during the last week or not. Further, demographic and clinical data were obtained. Applying a weighted scoring procedure based on experts’ and patients’ ratings as well as whether or not the items affected the patients, we identified the three most important main topics. RESULTS: From July to October 2017, n=96 eligible patients were approached and n=51 were interviewed. Mean age was 56 years (range 30–79), n=35 patients were male and n=46 patients (90%) had a high-grade glioma. Mean time of interview was 17min (range 9-35min). Patients indicated the topics “cognitive”, “mental” and “physical problems” as well as “problems concerning job and free time” to be nearly equally important with emphasis on the issues “fatigue” and “future uncertainty”. N=36 experts (neuro-oncologists) participated; we observed a tendency towards “physical” and “cognitive problems” with emphasis to “seizure” and “depressive symptoms”. Weighted scoring procedure revealed the following signaling main questions: “Has your mood worsened within the last week?”, “Are you strained by physical changes?”, “Do you have memory problems?”. CONCLUSION: Our study indicated 3 areas most important for patients with gliomas: cognitive, physical and mental problems. The corresponding signaling questions could be implemented in clinical consultation.