Preliminary tabulated results from the Fatigue Project Survey
Compiled and analyzed by Dr. Robyn Emmanuel of the Mayo Clinic team and Mary Cotter, project coordinator for MPNforum.
Dr. Ruben Mesa’s group at the Mayo Clinic estimates preliminary design of the research and the formal questionnaire preceding the clinical trial or interventional study will be available within three months.
Meantime, the MPN-Related Fatigue Project group continues to grow. This is the group that will get periodic updates, be sent the formal questionnaire later this summer, and invited to participate in the clinical trial or study at the Mayo Clinic.
To join the Fatigue Project, just send an e-mail to MRFproject@gmail.com and type FATIGUE in the Subject box. While you won’t receive an immediate confirmation, your e-mail address will be added to the group and sent to the project coordinator to be logged and included in our mailings.
Strategies to Reduce MPN-Related Fatigue (MRF): Results of an Internet-Based Survey Among 879 MPN Patients.
Background:
Symptom burden among MPN patients is severe compared to age-matched controlled and other individuals with cancer. MPN-Related Fatigue (MRF) is among one of the most frequent and debilitating of symptoms among MPN patients and contributes greatly to the loss of quality of life. To date, little is known regarding the breadth and efficacy of strategies to reduce or palliate MRF.
Methods:
A 17-item internet-based survey was hosted on the MPN Forum website during February of 2013. The survey included data on demographics, type of fatigue (chronic, sporadic, or both), strategies to reduce fatigue, and symptom burden using the MPN-SAF TSS. The MPN-SAF TSS also included a validated 1-item measure to assess worst fatigue in the last 24 hours (scored on a 0 (absent/as good as it can be) to 10 (worst-imaginable/as bad as it can be) scale).
Results:
879 MPN patients responded to the online survey. The majority of patients had been diagnosed with their MPN for more than one year (5.8% less than one year, 34.4% one to five years, 30.3% five to ten years, and 27.6% more than 10 years). Mean age of MPN diagnosis was 49.3 (range 12-84). A near equal mix was seen of chronic (35.3%), sporadic (29.9%) and both chronic and sporadic fatigue (28.8%). Average symptom burden was very severe (mean MPN-SAF TSS =31.9), with an average worst 24-hr fatigue rated as 5.9/10.
Many strategies to reduce MPN-related fatigue were mentioned via open and categorical responses (Table 1). Exercise was the most commonly mentioned fatigue reduction strategy, followed by diet and social interaction. Diet strategies included the consumption of fruits and vegetables and using foods to combat specific nutrient deficiencies (e.g., iron). Interventions to increase rest included obtaining >8 hours of sleep at night, taking frequent naps if needed, and strategically timing naps (e.g., sleeping prior to activity). Timing strategies were implemented to maximize energy levels, including scheduling activities at time periods during the day when patients felt most awake. Stress-reduction strategies included massages, meditation and yoga. Some respondents felt work was both source of energy and motivation, although others mentioned cutting back work hours or obligations in order to reduce fatigue. New activities such as gardening and enjoying the outdoors were also mentioned. Use of non-prescription supplementation, including caffeine and over-the counter energy supplementation, was common. Prescription energy stimulants included MPN-specific treatments (e.g., ruxolitinib, hydroxurea, ASA, interferon), steroids, noradrenergic stimulants (e.g., methyphenidate, modafinil), prescription vitamin supplements (e.g., vitamin B12 injections), erythropoietin analogues, and blood thinners.
Conclusions:
Overall patients were very symptomatic of disease (previously reported MPN-SAF TSS scores 18.7 ET, 21.8 PV, and 25.3 MF) and worst 24-hr fatigue (previously reported as 4.0 ET, 4.4 PV, and 5.0 MF) than previously published MPN cohorts (JCO 2012 20;30(36):4590). Future trials investigating pharmacologic, psychosocial, and activity-related interventions to reduce MRF are needed.
Report by Mary Cotter
Question: List any medications/supplements you are taking to relieve MRF.
The top ten responses to this question accounted for fully 72 percent of the medications or supplements used as an attempt to relieve Myeloproliferative Neoplasm- Related Fatigue, MRF. These include hydroxyurea (155), coffee (145), Jakafi (50), aspirin (49), Pegasys (44), multivitamins (20), anagrelide (14), tea (13), caffeine drinks (13), and interferon alpha (11).
Some of the more interesting supplements used by MPN patients include 5 hour energy shots (5), chocolate (4), Alcohol (2), wine (1), and water (1).
The full listing of preferences can be found here.
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Comments on: "MRF Fatigue Project – Interim Report on Interventions" (2)
I just registered so do not know if this is still open for comment but I would like to share I was diagnosed in 5/2012 with medium to high risk Myelofibrosis. Severe daily fatigue was the symptom that caused my internist to run the tests that resulted in my referral to a hematologist/oncologist. He has been my primary physician for over 30 years and he did not see fatigue as natural for me even though I was close to 70 at the time. Jackafi has allowed me to return almost completely to my normal schedule. I do have days where I am not as high energy as I would like but nothing compared to what had become routine fatigue for me prior to the medication.
Edito’rs note: April 7, 2012: Two changes were made to correct errors in the text.