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

Abstract

PurposeGlioma 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.MethodsIn total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.ResultsAdvantages 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.ConclusionsInformal 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 materialThe online version of this article (doi:10.1007/s00520-016-3112-7) contains supplementary material, which is available to authorized users.

Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time

“…This qualitative study is an extension of our earlier report on PBT caregivers' attitudes and preferences toward monitoring care issues [12]. Although PBT caregivers reported to have utilized a range of different formal and informal support services, those who experienced more care issues indicated to have preferred more support.…”

“…In our previous report on the attitudes and preferences of Dutch glioma patients and their family caregivers regarding monitoring symptoms, distress and QOL issues, we found that although the preferred method for monitoring issues is highly personal, a combination of online and personal care ('blended care') was advised [12]. Importantly, we found that family caregivers viewed monitoring symptoms, distress and QOL (collectively called 'care issues' hereafter) more favorably than patients did.…”

“…The same semi-structured interview schedule from our previous publication was used [12]. To summarize, the main topics were (1) experiences with supportive care provision and unmet supportive care needs; (2) thoughts and suggestions regarding keeping track of care issues, including frequency, timing and format; (3) attitudes toward and conditions for use of different paper-based (the Distress Thermometer [15]) and eHealth instruments (Oncoquest [16] and Oncokompas [17]) to track care issues over time.…”

“…Thematic data analysis [18,19], similar to the methods used in our previous publication [12], was conducted by two coders (PRS and FWB). The coders read the transcripts several times to familiarize themselves with the content, and highlighted sections of the transcripts that were related to the research objectives and independently selected and coded these into key issues and themes.…”

Research agenda for life-threatening cancer

“…Rooney et al (2014) demonstrated a design of a "Patient Concerns Inventory" in a neuro-oncological clinic that was more sensitive to the needs and concerns of brain tumour patients than general cancer checklists. Boele et al (2016) found that patients may find some disadvantages of monitoring as it can be time-consuming and may increase awareness of problems they did not know they had.…”