Background: Hepatocellular carcinoma (HCC) is the sixth most commonly-diagnosed cancer globally, and the second-leading cause of cancer deaths annually. To better understand the patient journey we conducted the first global survey of patients with HCC in 13 countries.The survey was live from November 2016 to April 2017 and gathered data from 256 respondents

Baiceanu, A.

Clark, P.

Gill, J. L.

Kanavos, P.

Langford, A.

Latiff, J.

Wilson, A.

Yang, P-M.

Yoshida, E.

Kanavos, Panos

LSE Research Online

  J. L Gill, A. Baiceanu, P. Clark, A. Langford, J. Latiff,  A. Wilson, P. – M. Yang, E. Yoshida & P. Kanavos HCC patient voices survey  Survey     Original citation: Gill, J. L. and Baiceanu, A. and Clark, P. and Langford, A. and Latiff, J. and Wilson, A. and Yang, P. - M. and Yoshida, E. and Kanavos, P. (2016) HCC patient voices survey. London School of Economics and Political Science, London, UK.  Originally available from the London School of Economics and Political Science  This version available at: http://eprints.lse.ac.uk/84143/  Available in LSE Research Online: August 2017  © 2016 The Authors  LSE has developed LSE Research Online so that users may access research output of the School. Copyright © and Moral Rights for the papers on this site are retained by the individual authors and/or other copyright owners. Users may download and/or print one copy of any article(s) in LSE Research Online to facilitate their private study or for non-commercial research. You may not engage in further distribution of the material or use it for any profit-making activities or any commercial gain. You may freely distribute the URL (http://eprints.lse.ac.uk) of the LSE Research Online website.        1 HCC Patient Voices Survey   Welcome to your Survey   Many thanks for considering taking part in the first ever global survey on patients who have been diagnosed with Liver Cancer. The purpose of the study is to better understand how Liver Cancer affects day to day life for people who have been diagnosed with the disease. Specifically, we would like to better understand how you have obtained and accessed information about your disease, how your day to day activities and outlook on the future has been affected, and the experiences you have had during different treatments you may have received.   Participation is voluntary and all answers are dealt with in the strictest confidence. The survey will be open until the end of March 2017. The research agency Strategic Sight Ltd is managing the survey and their details can be found by clicking on ‘Legal Info’ below. A report will be available at the end of the survey and we hope this will provide new insights for patients and healthcare professional on how to improve care for patients living with Liver Cancer.   By clicking on Begin below, you are consenting to take part in this research. Many thanks.   If you do have any questions, please contact us at question@hcc-voices.com     Q1 What is your gender? o Male  o Female        2 Q2 To which ethnic group do you belong? o White Caucasian  o Latino/Hispanic  o Middle Eastern  o African  o Caribbean  o South Asian  o East Asian  o Mixed  o Other  o I'd rather not say     Q3 Which type of liver disease did you have before you were diagnosed with Hepatocellular Carcinoma (HCC)? o Chronic Hepatitis B  o Chronic Hepatitis C  o Non-Alcoholic Fatty Liver Disease  o Other  o None          3 Q4 In what year were you born?     Q5 How long has it been since you were diagnosed with HCC? o Less then 1 year  o 1 to 3 years  o 4 to 6 years  o More than 6 years     Q6 How did you learn you had HCC? o From my GP (General Practitioner or Primary Care Doctor)  o Oncologist  o Hepatologist  o Gastroenterologist  o Emergency Room Physician  o Other ________________________________________________    Q7 Which 3 words best describe your feelings when you learned you had HCC?        4 Q8 Do you feel you received enough information about HCC and its treatment at the time you were diagnosed? o Yes  o No     Q9 What treatments have you received since you were diagnosed? o Liver Transplant  o Surgery (removal of some or all cancer)  o Liver Ablation (treating the cancer with extreme hot or cold)  o External Radiotherapy (treating the cancer with an x-ray beam)  o Internal Radiation Therapy (SIRT or radioembolisation - treating the cancer with implanted radioactive beads)  o Transarterial Chemotherapy (TACE - chemotherapy delivered directly to the cancer)  o Chemotherapy tablet (sorafenib/Nexavar)  o Intravenous Chemotherapy (given directly into a vein)  o Alternative medicine  o No treatment offered  o Treatment recommended, but declined     Q10 Of the treatments you selected, in which order did you receive them?        5 Q11 Did you take part in a clinical trial? o Yes  o No     Q12 If yes, do you remember anything key about the trial - name, treatment etc?     Q13 Are you currently under treatment, or have you any new treatment scheduled - if so which one? o Yes, treatment: ________________________________________________ o No     Q14 Which best describes your current situation? o I am fully active; I can do everything I did before I had HCC.  o I am still active, but I can't do all the things I used to do.  o I can get around a bit and take care of myself most of the time, but I can no longer work at my current/previous job.  o I can take care of myself a little bit, but I have to rest in bed or in a chair most of the time.  o I require a caregiver and I'm in bed or in a chair almost all of the time.        6 Q15 During your diagnosis or treatment where have you gone for advice or counsel and how useful have you found it?   Not Used Limited Value Good Value Excellent Value Internet - Medical Sites  o  o  o  o  Internet - Forums / Chat Groups  o  o  o  o  Patient Charities / Organizations  o  o  o  o  Friends / Family  o  o  o  o  Psychological Support  o  o  o  o  Alternative Medicine  o  o  o  o  Healer  o  o  o  o  Primary Care Doctor  o  o  o  o  Church / Religion / Religious Groups  o  o  o  o  Specialist  o  o  o  o  Nurse  o  o  o  o  Other  o  o  o  o         7 Q16 Thinking about your present or most recent medical treatment, what has been its effect on the following:   Significant Negative Effect Negative Effect Improved Somewhat Improved Significantly Your daily activities  o  o  o  o  Your level of energy  o  o  o  o  Your outlook for the future  o  o  o  o  Your general mood  o  o  o  o  Your family / carers  o  o  o  o  Your 'quality of life'  o  o  o  o      Q17 If you were working at the time you started treatment did the side effects prevent you from working? o Yes  o No     Q18 What else would you like to say about how this treatment has affected your everyday life?        8 Q19 Excluding surgery - which of the treatments you've received for your liver cancer has been the most challenging? o N/A - I've not received any treatment other than surgery  o Most challenging: ________________________________________________    Q20 Why was it so challenging?        9 Q21 Thinking specifically about side effects that you may have experienced during treatments, could you rate the impact they had on your quality of life?   I did not experience this Minor problem that I could manage myself Moderate problem that disturbed my daily routine Significant problem that required a doctor's attention Abdominal pain  o  o  o  o  Skin disorders (including painful hands and/or feet, blistering, rash etc.)  o  o  o  o  Nausea and/or vomiting  o  o  o  o  Diarrhea  o  o  o  o  Fatigue  o  o  o  o  Weight loss  o  o  o  o  Alopecia (hair loss)  o  o  o  o  Loss of appetite  o  o  o  o  Other:  o  o  o  o         10 Q22 How long did these side effects last?   1 to 2 days Up to 1 week More than 1 week, up to 4 weeks Most of the time All of the time Abdominal pain  o  o  o  o  o  Skin disorders (including painful hands and/or feet, blistering, rash etc.)  o  o  o  o  o  Nausea and/or vomiting  o  o  o  o  o  Diarrhea  o  o  o  o  o  Fatigue  o  o  o  o  o  Weight loss  o  o  o  o  o  Alopecia (hair loss)  o  o  o  o  o  Loss of appetite  o  o  o  o  o  Other  o  o  o  o  o         11 Q23 Compared to the way you felt before you were diagnosed with HCC how do you feel about the following?   Better than before diagnosis Similar to before diagnosis Slightly worse than before diagnosis Significantly worse than before diagnosis How tired I feel  o  o  o  o  My ability to exercise  o  o  o  o  My memory  o  o  o  o  My concentration  o  o  o  o  My appetite  o  o  o  o  How well I sleep  o  o  o  o  My relationship with my friends and family  o  o  o  o  My overall physical condition  o  o  o  o  My overall mental condition  o  o  o  o         12 Q24 How would you rate your quality of life today? o Excellent  o Good  o Fair  o Poor  o Other: ________________________________________________    Q25 If you could change one thing to improve your quality of life, what would it be?     Q26 Thinking about the future, how do you think further treatments that you might need could affect your everyday life and things you want to accomplish? o No impact  o Minimal impact  o Significant impact     Q27 Have you used supplementary health insurance during your HCC treatment? o Yes  o No    (if ‘No’ survey skips to Q34)    13 Q28 Were all the treatment options covered by your insurance plan? o Yes  o No    (if ‘Yes’ survey skips to Q34)   Q29 Was your treatment chosen based on what was covered by your insurance policy? o Yes  o No, details: ________________________________________________    Q30 Did you have to pay out of pocket for any of the treatments? o Yes  o No     Q31 If yes, were you reimbursed?     Q32 Did your doctor have to make a special request to the hospital administration for your treatment? o Yes  o No        14 Q33 If yes, did you have to wait longer before starting treatment?     Q34 Were your referred to a different hospital because the treatment option that your doctor wanted you to have was not available in the hospital? o Yes  o No   End of Block  

HCC patient voices survey

http://eprints.lse.ac.uk/84143/1/Kanavos_HCC%20patient%20voices_2017.pdf

HCC patient voices survey

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