MPN-10 自我監察

MPN-10 自我監察

MPN-10症狀評估表是一個快速而有效的自我評估工具,能協助患者自行監察病情。在下次覆診前,使用本評估工具記錄以下任何症狀的改變,方便醫生跟進。²²

疲勞 廣泛性骨頭疼痛
夜間盜汗 活動力欠佳
容易有飽腹感 體溫超過37.8℃
搔癢 注意力下降
腹部不適 過去6個月非刻意的體重減輕
MPN症狀評估表連結 : 請按此

會見醫生時,帶備症狀評估及準備好的問題和筆記本,以便記下答案。此外,可考慮邀請家人或朋友陪伴你一起會見醫生,這能給予你精神上的支持。他們更可協助你抄錄筆記或發問一些你沒有想到的問題。

為甚麼要追蹤症狀?
· 症狀會隨着患者的個體差異和嚴重程度而異
· 症狀會隨着時間,對生活質素的影響越來越大
· 持續跟進並與醫療團隊溝通,有助提升治療質素
· 提升患者參與度,加強醫患合作

參考資料:

  1. Primary Myelofibrosis. National Organization for Rare Disorders. Available at: https://rarediseases.org/rare-diseases/primary-myelofibrosis. Accessed 25 May 2022.
  2. Myeloproliferative Neoplasms (MPN) Research Funded by LLS. Leukemia & Lymphoma Society. Available at: lls.org/research/myeloproliferative-neoplasms-mpn-research-funded-lls. Accessed 25 May 2022.
  3. Myelofibrosis ‒ Symptoms & causes. Mayo Clinic. Available at: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057. Accessed 7 February 2022.
  4. Song MK, et al. Understanding Splenomegaly in Myelofibrosis: Association with Molecular Pathogenesis. Int J Mol Sci. 2018;19(3):898.
  5. Myelofibrosis. Cleveland Clinic. Available at: https://my.clevelandclinic.org/health/diseases/15672-myelofibrosis. Accessed 4 March 2022.
  6. Tefferi A, et al. One thousand patients with primary myelofibrosis: the mayo clinic experience. Mayo Clin Proc. 2012;87(1):25-33.
  7. Ganget N, et al. DIPSS plus: a refined Dynamic International Prognostic Scoring System for primary myelofibrosis that incorporates prognostic information from karyotype, platelet count, and transfusion status. J Clin Oncol. 2011;29(4):392-7.
  8. Stein BL et al. Polycythemia vera disease burden: contributing factors, impact on quality of life, and emerging treatment options. Ann hematol. 2014; 93: 1965-1976.
  9. Scherber RM et al. Quality of Life in MPN Comes of Age as a Therapeutic Target. Curr Hematol Malig Rep. 2014;9:324-330.
  10. Gnessnammer M et al. Current and future treatment options for polycythemia vera. Ann Hematol. 2015; 94: 901-910.
  11. Myeloproliferative Neoplasms Version 2.2021. NCCN Guidelines. Available at: https://www.nccn.org/professionals/physician_gls/pdf/mpn.pdf. Accessed 7 February 2022.
  12. Leukaemia Care. Myelofibrosis. A Guide for Patients. Version 4. Printed October 2022.
  13. Erythropoietin-Stimulating Agents. Cleveland Clinic. Available at: https://my.clevelandclinic.org/health/drugs/14573-erythropoietin-stimulating-agents. Accessed 20 Jun 2022.
  14. Healthy Lifestyle Habits For A Better Quality Of Life. Leukemia & Lymphoma Society. Available at: https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FF7_Healthy_Behaviors.pdf. Accessed 7 February 2022.
  15. Follow-up Care And Survivorship. Leukemia & Lymphoma Society. Available at: https://www.lls.org/treatment/follow-care-and-survivorship. Accessed 7 February 2022.
  16. Staying Healthy through Diet and Physical Activity. Children’s Oncology Group. Available at: http://www.survivorshipguidelines.org/pdf/healthlinks/English/diet_and_physical_activity_Eng.pdf. Accessed 7 February 2022.
  17. Nutrition recommendations for MPN patients. Scherber RS et al. MPN Quality of Life Study Group. Available at https://www.mpnresearchfoundation.org/wp-content/uploads/2021/04/Nutr-Recs-for-MPNs_FINAL_12-4-19.pdf. Accessed 20 June 2022.
  18. Coping With Myelofibrosis. Cancer Care. Available at: https://www.cancercare.org/publications/197-coping_with_myelofibrosis. Accessed 7 February 2022.
  19. What Does It Mean To Be ‘Immunocompromised’?. Yale Medicine. Available at: https://www.yalemedicine.org/news/what-does-immunocompromised-mean. Accessed 7 February 2022.
  20. Prevention & Control ‒ Immunocompromised Persons. Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/parasites/crypto/gen_info/prevent_ic.html. Accessed 7 February 2022.
  21. Coping With Myeloproliferative Neoplasms. Cancer Care. Available at: https://media.cancercare.org/publications/original/282-cfs_coping_mpns.pdf. Accessed 7 February 2022.
  22. Emanuel RM, et al. Myeloproliferative neoplasm (MPN) symptom assessment form total symptom score: prospective international assessment of an abbreviated symptom burden scoring system among patients with MPNs. J Clin Oncol. 2012;20;30(33):4098-103.
  23. Emanuel RM, et al. Myeloproliferative neoplasm (MPN) symptom assessment form total symptom score: prospective international assessment of an abbreviated symptom burden scoring system among patients with MPNs. J Clin Oncol. 2012;20;30(33) (supple 1):4098-103.