Questionnaire on Quality of Life of Chinese CML Patients. Tyrosine kinase inhibitors (TKIs) have dramatically changed the history of

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Supplementary material Questionnaire on Quality of Life of Chinese CML Patients Tyrosine kinase inhibitors (TKIs) have dramatically changed the history of chronic myelogenous leukemia (CML) treatment. Most of patients have a similar life-expectancy to the general population. Lifelong TKI-therapy is still the well-known recommended treatment for CML in the world and stopping TKI therapy is only restricted in clinical trials. However, the decreased quality of life related to TKI-therapy has aroused more and more attention of physicians and patients. In order to explore the influence of TKI-therapy on Chinese CML patients, including quality of life, TKI-therapy related symptoms and the patients common concerns, we design a survey and ask you to complete this questionnaire. We hope this survey will help physicians to make better management for Chinese CML patients. I. Fill in the blank Name: (optional) Date 1. Gender: A. male B. Female 2. Age: 3. Habitual residence: (City) (Province) 4. Household registration: A. urban B. rural 5. Marital status: A. Married B. Single C. Divorced D. Widowed 1

6. Education level: A. Elementary B. Junior high C. Senior high D. Bachelor E. Master/Doctor 7. Do you have co-mobidity (ies)? (multiple choices) A. hypertension B. Diabetes C. Coronary heart disease D. Cerebrovascular disease E. Liver disease F. Chronic pulmonary disease G. other tumor H. thrombus I. peptic ulcer J. kidney disease L. others 8. Other medications 9. When were you diagnosed with CML? (Year) How old when you were diagnosed? 10. Disease phase when diagnosed with CML: A. chronic B. accelerated C. blast crisis 11. Which therapy did you receive after diagnosis (before TKI-therapy)? A. interferon from (year) to (year) B. hydroxycarbamide from (year) to (year) C. chemotherapy from (year) to (year) D. bone marrow transplantation from (year) to (year) E. others, from (year) to (year) 12. When did you start TKI treatment? (month) (year) 13. Which TKI did you take? A. Glivec (Novartis) B. Generic imatinib (GeNiKe, Xinwei) C. Foreign generic imatinib D. Tasgina (Novartis) 2

E. Sprycel (Bristol-Myers Squibb) F. Generic dasatnib (Yinishu) G. Foreign generic Dasatinib H. Ponatinib (branded drug) I. Others (please list) 14. Which TKI are you taking now? A. Glivec (Novartis) B. Generic imatinib (GeNiKe, Xinwei) C. Foreign generic imatinib D. Tasgina (Novartis) E. Sprycel (Bristol-Myers Squibb) F. Generic dasatnib (Yinishu) G. Foreign generic Dasatinib H. Ponatinib (branded drug) I. Others (please list) 15. Duration of TKI-therapy (years) (months) (If it is less than 1 year, please calculate it by months.) (medication), taking from (month) (year) to (month) (year) (medication), taking from (month) (year) to (month) (year) (medication), taking from (month) (year) to (month) (year) 16. Your current disease phase: A. chronic B. accelerated C. blast crisis 17. Your current responses: A. Ph+ chromosome positive negative B. BCR-ABL gene positive negative 3

18. Your satisfaction with TKI therapy: A. high satisfaction; B. satisfaction; C. dissatisfaction; D. extreme dissatisfaction 19. Is your work and daily life negatively influenced by TKI-therapy? A. Yes B. No 20. Your TKI cost-sharing resource is: A. out-of-pocket expense: PAP (patient assistant program) 3+9 PAP 3+12 medical insurance no PAP or reimbursement B. cost free clinical trials special PAP reimbursement 21. Total TKI out-of-pocket expenses per year (RMB) 22. Your concerns on: (multiple choices): (1) CML knowledge (2) New drug development (3) TKI treatment choice (4) TKI dose adjustment (5) TKI-related side effects (6) Drug interactions (7) Long-term efficacy of TKIs (8) Interpretation of laboratory reports (9) Monitoring methods and significance (10) Fertility (11) Stopping TKIs (12) Quality of generic TKIs (13) Switch between branded TKIs and generics (14) Warnings in the daily life (15) TKI cost (16) TKI reimbursement policies II SF-36 QUESTIONNAIRE 4

III If you have any of the following symptom(s), please tick the proper degree Symptoms Degree Discontinue therapy due to symptoms Needing treatment Palpebral/lower limb edema Mild/moderate/severe Yes/no Yes/no Fatigue Mild/moderate/severe Yes/no Yes/no Chest congestion Mild/moderate/severe Yes/no Yes/no Pleural/peritoneal effusion Mild/moderate/severe Yes/no Yes/no Fever Mild/moderate/severe Yes/no Yes/no Weight gain Mild/moderate/severe Yes/no Yes/no Weight loss Mild/moderate/severe Yes/no Yes/no Bleeding Mild/moderate/severe Yes/no Yes/no Palpitation Mild/moderate/severe Yes/no Yes/no Depression /anxiety Mild/moderate/severe Yes/no Yes/no Headache Mild/moderate/severe Yes/no Yes/no Dizziness Mild/moderate/severe Yes/no Yes/no Tinnitus Mild/moderate/severe Yes/no Yes/no Insomnia Mild/moderate/severe Yes/no Yes/no Hypomnesis Mild/moderate/severe Yes/no Yes/no Conjunctivitis excess lacrimation Mild/moderate/severe Yes/no Yes/no Bulbar conjunctiva bleeding Mild/moderate/severe Yes/no Yes/no Dry eye Mild/moderate/severe Yes/no Yes/no 5

Loss of appetite Mild/moderate/severe Yes/no Yes/no Nausea Mild/moderate/severe Yes/no Yes/no Vomiting Mild/moderate/severe Yes/no Yes/no Diarrhoea Mild/moderate/severe Yes/no Yes/no Abdominal pain Mild/moderate/severe Yes/no Yes/no Abdominal distention Mild/moderate/severe Yes/no Yes/no Easily bleeding after skin collision Mild/moderate/severe Yes/no Yes/no Skin rash/ pruritus Mild/moderate/severe Yes/no Yes/no Skin color change Mild/moderate/severe Yes/no Yes/no Hair color change Mild/moderate/severe Yes/no Yes/no Alopecia Mild/moderate/severe Yes/no Yes/no Muscle cramps Mild/moderate/severe Yes/no Yes/no Arthralgi /musculoskeletal pain Mild/moderate/severe Yes/no Yes/no Hyperidrosis Mild/moderate/severe Yes/no Yes/no (Male) breast enlargement Mild/moderate/severe Yes/no Yes/no (Female) mammary swelling pain Mild/moderate/severe Yes/no Yes/no (Female) menorrhagia Mild/moderate/severe Yes/no Yes/no (Female) hypomenorrhea Mild/moderate/severe Yes/no Yes/no (Female) amenorrhea Mild/moderate/severe Yes/no Yes/no Decreased libido/sexual dysfunction Mild/moderate/severe Yes/no Yes/no 6

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