The MPN Fatigue Project: Stage 1 Results Of The MPN Forum Internet-Based Survey Among 879 MPN Patients

摘要: Background Symptom burden among MPN patients is severe compared to age-matched controlled and other individuals with cancer. MPN-Related Fatigue (MRF) one of the most frequent debilitating symptoms contributes greatly loss quality life. To date, little known regarding breadth efficacy strategies reduce or palliate MRF. Methods A 17-item internet-based survey was hosted on Forum website during February 2013. The included data demographics, type fatigue (chronic, sporadic, both), fatigue, symptom using MPN-SAF TSS. TSS also a validated 1-item measure assess worst in last 24 hours (scored 0 (absent/as good as it can be) 10 (worst-imaginable/as bad scale). Results 879 responded online survey. majority had been diagnosed their for more than year (5.8% less year, 34.4% five years, 30.3% ten 27.6% years). Mean age diagnosis 49.3 (range 12-84). near equal mix seen chronic (35.3%), sporadic (29.9%) both (28.8%). Average very (mean =31.9), an average 24-hr rated 5.9/10. Many MPN-related were mentioned via open categorical responses ([Table 1][1]). Exercise commonly reduction strategy, followed by diet social interaction. Diet consumption fruits vegetables foods combat specific nutrient deficiencies (e.g., iron). Interventions increase rest obtaining >8 sleep at night, taking naps if needed, strategically timing sleeping prior activity). Timing implemented maximize energy levels, including scheduling activities time periods day when felt awake. Stress-reduction massages, meditation yoga. Some respondents work source motivation, although others cutting back obligations order fatigue. New such gardening enjoying outdoors mentioned. Use non-prescription supplementation, caffeine over-the counter common. Prescription stimulants MPN-specific treatments ruxolitinib, hydroxurea, ASA, interferon), steroids, noradrenergic methyphenidate, modafinil), prescription vitamin supplements B12 injections), erythropoietin analogues, blood thinners. View this table: Table 1 Frequency patients. ![Graphic][2] Conclusions Overall symptomatic disease (previously reported scores 18.7 ET, 21.8 PV, 25.3 MF) 4.0 4.4 5.0 previously published cohorts (JCO 2012 20;30(36):4590). Many intervention are utilized MRF. Future trials investigating pharmacologic, psychosocial, activity-related interventions MRF needed. Disclosures: Harrison: NOVARTIS: Honoraria, Membership entity’s Board Directors advisory committees, Research Funding, Speakers Bureau; Sanofi: YM Bioscience: committees; Celgene: Honoraria; Shire: Sbio: Gilead: committees. [1]: #T1 [2]: T1/embed/inline-graphic-1.gif