From Fatigue Surveys to Survey Fatigue - Notes from Daily Hematology Practice

Background: Monitoring fever, pain, and nausea has become a daily routine in hematology and oncology practice. Fatigue is also common but thematized much less often. Therefore, guidelines and professional organizations recommend implementing fatigue assessment in daily oncology practice. The current deficits can be explained by diverging scientific concepts, inconsistent definitions, and lack of consensus on measurement and therapy. As a quality improvement initiative and first step towards better fatigue assessment we wanted to find out which fatigue questionnaire is best suited for our patients.

Methods: On two educational meetings on general oncology issues we invited patients and healthy controls to participate in an anonymous survey. We distributed three different fatigue questionnaires (Fatigue Assessment Scale - FAS, Functional Assessment of Cancer Therapy-Fatigue-Scale - FACT-F, EORTC questionnaire on cancer related fatigue - EORTC QLQ-FA12, one for each participant) and asked to rate the questionnaires on a 5-point scale (1= fitting best to 5 = not fitting). We also counted the number of questions that had been left blank.

Results: Seventy-seven of 90 questionnaires were returned (85%). The average approval rating of the FAS questionnaire was 2.3 (patients n=10, score 2.0; controls n=35, score 2.3), of EORTC QLQ-FA12 2.4 (patients n=8, score 2.4; controls n=8, score 2.4), and of FACT-F 2.1 (patients n=9, score 2.0; controls n=7, score 2.3). The percentage of questions that had been left blank with FAS was 0.5%, 3% with EORTC QLQ-FA12, and 14% with FACT-F.

Conclusion: This survey did not measure fatigue and we do not know how many of our patients had fatigue. Its purpose was to assess the acceptance of three different fatigue questionnaires. The unexpected finding was that the average rating of all three questionnaires was remarkably similar and close to neutral. The number of blanks was highest with the EORTC QLQ-FA12 questionnaire which had more items than the two others. One explanation could be, that participants do not value questionnaires when they are long ("survey fatigue"). Maybe participants perceive fatigue as a personal failure and do not want to reveal this on a questionnaire, particularly not when there is a chance that this goes into their patient file. Questionnaires were developed for scientific research but might not be the right instrument to thematize fatigue in the setting of a busy hemato-oncology practice.