Part One: Free Listing of Informational Needs

Date: ______

Coordinator: ______

Interview Guide

Version 2 January 2015

Part One: Free Listing of Informational Needs

Introduction: Thank you for agreeing to participate in this study. The researchers are interested in building a tool to help patients and doctors make decisions about HCV treatment. For example, a patient may consider whether or not they want to do treatment. Or if they decide they want to do treatment, they may want to learn about different treatment options available to decide which regimen might be best for them. Each person is different in terms of what is most important to them and what they need to know to make a good decision for them. Today we are going to be asking you to share your thoughts about making a decision about HCV treatment or choosing between different medications that are available.

First, I would like you to list off all the different kinds of information that you feel you need to have to make the rightdecision for you, such as choosing between two different types of medications.

(After a few answers, ask twice more “Anything else you might want to know about HCV treatment, or about differences between medications, to help you make a good decision?” –Do NOT offer any suggestions)

Write Exact Answer Below, and put number 1-17 from reference list that you think best captures their answer.

Put an X next to any answer that you do not think fitsinto any of the a priori subcategories.

Reference List

• What is Hep C?
• How long have I had Hep C?
• What are genotypes?
• Does Hep C affect the immune system?
• How do I take care of my liver?
• How many people of my ethnicity have this genotype?
• Can I donate organs or blood after being cured?
• What is viral load?

• How did I contract Hep C?
• How is Hep C transmitted?
• Is Hep C sexually transmitted?
• Can Hep C be transmitted from mother to child?
• Can I transmit Hep C if I have sex while on my period?

• How do I cope with the shame of having it?
• Are there Hep C support groups?

• At what point does your eye color change?
• At what stage of the disease does skin turn yellow?
• Is shortness of breath a side effect of tx?
• Is joint pain a side effect of tx?
• Does Hep C have the same effects as cirrhosis?

• What is the stage of my liver disease?
• How do I cope with fatigue?
• How do I cope with disease and symptoms?
• How does the disease progress if left untreated?
• Do I have cirrhosis?

• How long does treatment last?
• How many doctor visits do I attend?
• What is the medical regimen like?
• Are there different treatment options?
• How many times must I come back after treatment?
• If my lab readings are normal, does it mean I’m cured?
• Will I still qualify for treatment if I am overweight?
• What labs are necessary in treatment?
• How do I involved my family with treatment, what info do they need?

• How will treatment be administered, pills? injections?
• What do the medicines do in my body?
• Does treatment affect other tx medications I’m taking?
• What type of medicine will I get?
• Are there medications that interfere with Hep C treatment?

• Will there be a change in diet?
• Will there be dietary restrictions?
• Do I need to be on a specific vitamin regimen?
• Will I need a personalized system of care?
• If I live alone, will I need another person to care for me?

• What are the common side effects of treatment?
• What are the rare side effects of treatment?
• Does thetx medication affect my concentration? mood?
• Will treatment make me lose weight?
• Does treatment cause hair loss?
• Will I need to be on an anti-depressant?
• Will treatment cause nausea?
• Will medication affect my appetite?
• Will treatment cause weight gain?
• Does treatment affect sexual desire?
• Will treatment cause sores?
• How safe is the treatment for my body?

• Will treatment affect my ability to work?
• How debilitating will this treatment be?
• Will treatment affect my family and social life?
• Will treatment reduce my quality of life?

• How much will treatment cost me personally?
• How does my health-plan pay for treatment?
• Is there any compensation for clinical trials to off-set treatment cost?

• What is the cure rate?
• What are my chances of getting rid of Hep C?
• Which treatment has worked most with others?
• Can Hep C come back after being cured?
• Are there benefits to a partial course of treatment?

• Will I live longer if I undergo treatment?

• What are the long-term benefits of getting rid of Hep C?
• Does treatment affect(benefit) my already existing conditions?
• How long after treatment will I feel better?
• Am I going to function well after treatment?
• If I get rid of Hep C, will some of my symptoms diminish?

• What is the risk if I don’t get treatment?
• Will my Hep C cause cancer if I don’t get treatment?
• What else can Hep C affect other than the liver?