Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

PURPOSE: Glioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients’ and caregivers’ attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options. METHODS: In total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently. RESULTS: Advantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments. CONCLUSIONS: Informal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s00520-016-3112-7) contains supplementary material, which is available to authorized users.