Purpose Fatigue is a very common symptom in SLE patients and often held responsible for their reduced quality of life. With this survey, we wanted to examine the degree of suffering in SLE patients with fatigue and determine, whether they would trade in years in order to live without fatigue or if they would trade in fatigue for other disease manifestations (skin, joints or kidney). We also looked at the number of patients, who were regularly asked about fatigue by their treating physician.
Methods Our patient survey took place during a meeting with patients from the German SLE self help community on World Lupus Day, May 10th 2019 in Düsseldorf, Germany. We used Edivote®, which is an anonymous, audience response system working with PowerPoint® for our survey. Patients’ demographics (age, gender and disease duration) were documented separately. We asked if patients had been questioned by their treating physicians about fatigue (1: always, 2: sometimes, 3: never), how many years of life they would sacrifice in order to live without fatigue (0, 5, 10, 15, >15 years, respectively) and who would trade in fatigue for another disease manifestation (skin, joints or kidney).
Results 26 patients (25 female) agreed to take part in our survey and completely or in part responded to the questions asked. Most patients were ≤50 years old (n=16, 61.5%). Most patients had a disease duration of >5 years (6–10 years: n=5; >10 years: n=16). Six patients were regularly asked about fatigue, four patients were sometimes asked about fatigue and eight patients had never been asked about fatigue. The results of the time trade-off question are shown in figure 1, sorted by patients’ age. In our cohort, five patients were willing to trade in fatigue for a skin manifestation (consistent redness on exposed skin). One patient was willing to trade in fatigue for a kidney manifestation (50% reduction of kidney function, accompanied by edema and fluid restriction). Twelve patients did not want to trade in fatigue for one of the mentioned disease manifestations.
Conclusion 42% of responding patients in our cohort (n=19) had never been asked about fatigue by their treating physicians. To our surprise, almost all patients were willing to trade in at least 5 years and more for a life without fatigue. This result underlines patients’ degree of suffering and should raise more awareness for SLE patients living with fatigue. Our results clearly indicate the discordant assessment of the importance of fatigue by patients and physicians. Although our cohort is small and relatively young, even some patients between the age of 61 and 70 were willing to trade in up to 10 years for a life without fatigue. Future research must be conducted to better understand fatigue in SLE patients and to develop appropriate treatment strategies. Our results with respect to time trade-offs should be validated in a larger cohort.
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