Utilizing integrative medicine to treat symptomatic MPN: Thoughts from patients

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.