Attribute levels for the DCE
| Attribute . | Description in survey . | Levels . |
|---|---|---|
| How long until cancer advances | The goal of any medicine for CLL is to remove cancer cells from your body, especially from your blood and bone marrow. When the medicine is working, symptoms of CLL, such as swollen lymph nodes, tiredness, and weight loss, may go away or decrease and your blood counts can return to normal. Over time, the medicine can become less effective. Eventually, CLL symptoms may return and blood or bone marrow tests will show that the number of cancer cells is increasing. This means that the medicine is not working to control the cancer anymore, and the cancer is advancing (getting worse). When this happens, your doctor will talk to you about options, including starting a new CLL medicine. | 10 months 26 months 36 months 60 months |
| How you take the medicine | Medicines to treat CLL can be taken in different ways and follow different schedules. Some medicines are taken for a fixed amount of time, while other medicines need to be taken for as long as the medicine continues to work and the cancer does not advance. In this survey, we will ask you to think about 2 different ways you can take a hypothetical CLL medicine. IV (intravenous infusion) 1 time every month for 6 months ▪ An IV (intravenous infusion) administered at a chemotherapy clinic or hospital 1 day each month for 6 months. ▪ An IV tube is inserted into a blood vessel in your arm to administer the medicine. The IV infusion lasts from 1-1/2 to 4 hours. ▪ You need to spend about 6 hours at the hospital or clinic each time you need an IV infusion.Pills every day until the cancer advances. ▪ You take 1 to 4 pills by mouth either once or twice a day at the same time every day for as long as the medicine continues to work. | IV 1-3 times per month for 6 months Pill every day for X months* |
| Diarrhea† | Some medicines that treat CLL can cause diarrhea (loose stools). For this survey, assume that if a medicine causes diarrhea, the diarrhea would last for 2 to 3 days every month for as long as you are taking the medicine. Later in the survey, we will ask you to think about how severe the diarrhea may be with different hypothetical cancer medicines. There are 3 possibilities: ▪ None. You experience no diarrhea. ▪ Mild to moderate. You have fewer than 7 loose stools per day, and you may experience cramping. The diarrhea lasts for 2 to 3 days each month. ▪ Severe. You have 7 or more loose stools per day, and you have bowel control problems. You experience extreme fluid loss (dehydration) and may need IV fluids. You may need help taking care of yourself, including bathing, dressing, feeding yourself, using the toilet, and taking medications. The diarrhea lasts for 2 to 3 days each month. | None Mild to moderate for 2-3 days a month Severe for 2-3 days a month |
| Chance of serious infection† | For some people, medicines that treat CLL can also damage your body’s ability to make the healthy blood cells that protect your body from illness and infection. When this happens, your immune system becomes weaker and you are more likely to get a serious infection during treatment. People taking CLL treatments may develop different types of infections, including respiratory infections like pneumonia, infections with fever, skin infections with rashes or painful sores, hepatitis, or herpes simplex. When taking a medicine that makes you more likely to get a severe infection, you need to avoid situations where you could be exposed to infections. For example, you need to stay away from other people who are sick and avoid being in large groups of people. People who have a severe infection during treatment may need to go to the hospital, sometimes for as long as a couple of weeks. If not successfully treated, some infections can be life-threatening. Once the infection is gone, most people completely recover and no additional medical treatment is required for the infection. | None 5% 15% 30% |
| Chance of organ damage† | When tumor cells die, they break apart and chemicals from the cells are released into the blood. For some people who are treated for CLL, these chemicals can build up in the blood and cause damage to organs, including the kidneys, heart, and liver. People with organ damage can experience severe problems like vomiting, tiredness, muscle weakness, or seizures, and they need to be treated at the hospital for several days until their organs begin to function normally. Severe organ damage can be life-threatening if it is not treated, but this is very rare. Your doctor will monitor you for signs of organ damage. | None 1% 5% 8% |
| Attribute . | Description in survey . | Levels . |
|---|---|---|
| How long until cancer advances | The goal of any medicine for CLL is to remove cancer cells from your body, especially from your blood and bone marrow. When the medicine is working, symptoms of CLL, such as swollen lymph nodes, tiredness, and weight loss, may go away or decrease and your blood counts can return to normal. Over time, the medicine can become less effective. Eventually, CLL symptoms may return and blood or bone marrow tests will show that the number of cancer cells is increasing. This means that the medicine is not working to control the cancer anymore, and the cancer is advancing (getting worse). When this happens, your doctor will talk to you about options, including starting a new CLL medicine. | 10 months 26 months 36 months 60 months |
| How you take the medicine | Medicines to treat CLL can be taken in different ways and follow different schedules. Some medicines are taken for a fixed amount of time, while other medicines need to be taken for as long as the medicine continues to work and the cancer does not advance. In this survey, we will ask you to think about 2 different ways you can take a hypothetical CLL medicine. IV (intravenous infusion) 1 time every month for 6 months ▪ An IV (intravenous infusion) administered at a chemotherapy clinic or hospital 1 day each month for 6 months. ▪ An IV tube is inserted into a blood vessel in your arm to administer the medicine. The IV infusion lasts from 1-1/2 to 4 hours. ▪ You need to spend about 6 hours at the hospital or clinic each time you need an IV infusion.Pills every day until the cancer advances. ▪ You take 1 to 4 pills by mouth either once or twice a day at the same time every day for as long as the medicine continues to work. | IV 1-3 times per month for 6 months Pill every day for X months* |
| Diarrhea† | Some medicines that treat CLL can cause diarrhea (loose stools). For this survey, assume that if a medicine causes diarrhea, the diarrhea would last for 2 to 3 days every month for as long as you are taking the medicine. Later in the survey, we will ask you to think about how severe the diarrhea may be with different hypothetical cancer medicines. There are 3 possibilities: ▪ None. You experience no diarrhea. ▪ Mild to moderate. You have fewer than 7 loose stools per day, and you may experience cramping. The diarrhea lasts for 2 to 3 days each month. ▪ Severe. You have 7 or more loose stools per day, and you have bowel control problems. You experience extreme fluid loss (dehydration) and may need IV fluids. You may need help taking care of yourself, including bathing, dressing, feeding yourself, using the toilet, and taking medications. The diarrhea lasts for 2 to 3 days each month. | None Mild to moderate for 2-3 days a month Severe for 2-3 days a month |
| Chance of serious infection† | For some people, medicines that treat CLL can also damage your body’s ability to make the healthy blood cells that protect your body from illness and infection. When this happens, your immune system becomes weaker and you are more likely to get a serious infection during treatment. People taking CLL treatments may develop different types of infections, including respiratory infections like pneumonia, infections with fever, skin infections with rashes or painful sores, hepatitis, or herpes simplex. When taking a medicine that makes you more likely to get a severe infection, you need to avoid situations where you could be exposed to infections. For example, you need to stay away from other people who are sick and avoid being in large groups of people. People who have a severe infection during treatment may need to go to the hospital, sometimes for as long as a couple of weeks. If not successfully treated, some infections can be life-threatening. Once the infection is gone, most people completely recover and no additional medical treatment is required for the infection. | None 5% 15% 30% |
| Chance of organ damage† | When tumor cells die, they break apart and chemicals from the cells are released into the blood. For some people who are treated for CLL, these chemicals can build up in the blood and cause damage to organs, including the kidneys, heart, and liver. People with organ damage can experience severe problems like vomiting, tiredness, muscle weakness, or seizures, and they need to be treated at the hospital for several days until their organs begin to function normally. Severe organ damage can be life-threatening if it is not treated, but this is very rare. Your doctor will monitor you for signs of organ damage. | None 1% 5% 8% |
X months is the same as length of time until cancer advances, meaning you take the pill every day until the cancer advances.
In the DCE questions, respondents were reminded that the chance of serious infection and organ damage and diarrhea lasted for the duration of treatment (6 months or PFS, depending on whether mode of administration was an IV or a pill). See Figure 1A for a sample DCE question.