Background: The purpose of this study was to determine the acceptability of a survey for MPN patients about: a) how patients with MPN cancer perceive information relayed from their healthcare providers in regards to integrative medicine and b) how patients use integrative medicine modalities to cope with their symptom burden (i.e. fatigue, headaches, abdominal discomfort). Additionally, we assessed what MPN patients thought about the survey (i.e., questions asked, how it could be modified, acceptability). This paper presents the patient's assessment of the survey. This information will be used to finalize the survey and distribute nationally to address integrative medicine and symptom burden in MPN patients. Methods: The survey was taken by 366, English speaking patients previously diagnosed with essential thrombocythemia, polycythemia vera, or myelofibrosis (primary and post polycythemia vera/post essential thrombocythemia) and ages 18 or older. The survey had XX questions and took approximately 20 minutes to complete. Acceptability questions were qualitatively analyzed and used to construct recurring themes and modifications for the final MPN Integrative Survey. Results: The following themes were recurrent in the acceptability responses; MPN symptom burden comments, views on healthcare, comments about demographics, and requests for survey modifications. When asked which Integrative Therapies have been used to treat symptom burden, participants most commonly named guidance therapy (i.e. counseling, prayer), physiotherapy ,and supplements administered orally, intravenously, intramuscularly, and topically. Conclusions: These results suggest this survey is an acceptable and feasible tool for MPN patients to assess how patients with MPN cancer perceive information relayed from their healthcare providers in regards to integrative medicine, and how patients use integrative medicine modalities to cope with their symptom burden. These findings also provide a better understanding of what facilitates and prevents MPN patients from using Integrative Medicine to treat MPN symptoms, as well as suggests useful survey modifications to inform the final MPN Integrative Survey.

Myeloproliferative neoplasm (MPN) patients suffer from fatigue and a reduced overall quality of life, both of which are not resolved with current pharmacologic therapy. The purpose of this study was to examine the effects of a 12-week online-streamed yoga intervention on fatigue and QoL in MPN patients as compared to a wait-list control group as well as to determine the feasibility of remotely collecting blood and saliva samples in a national sample. MPN patients were asked to complete 60 min/week of online yoga for 12 weeks. MPN fatigue and QoL were assessed online with single-item questions taken from the MPN SAF (fatigue and QoL) and NIH PROMIS (QoL) at baseline, week 7, and week 12. The practicality of the blood and saliva measures were defined as >70% completion rate at both baseline and week 12. Fidelity of the intervention (i.e., weekly yoga participation) was assessed via both self-report (i.e., daily log) and objective measurement (i.e., Clicky). Of the 62 MPN patients that enrolled in the study, 48 completed the intervention with 27 participating in the yoga group and 21 participating in the wait-list control group. Weekly yoga participation averaged ~41 min/week as measured objectively, whereas self-report yoga participation averaged ~56 min/week. The blood draw was determined to be practical with a 92.6% completion rate at baseline and a 70.4% completion rate at week 12. There were no significant differences from baseline to week 12 in MPN SAF fatigue (ES=0.18; p=0.724) or MPN SAF QoL (ES=-0.53; p=0.19), however, NIH PROMIS QoL was significantly improved from baseline to week 12 (ES=0.7; p=0.031) when compared to the control group. This study builds upon the findings from a prior feasibility study in demonstrating the feasibility of online yoga as well as its preliminary effects of improving total symptom burden, fatigue, pain, depression, anxiety, and sleep disturbance in MPN patients. Given the effects of yoga demonstrated both in the feasibility study and the current pilot study, a future randomized controlled trial with a larger sample size is warranted in order to further investigate the effectiveness of online yoga for MPN patient symptom burden and QoL.