Table 1 Health States

Background

You have been diagnosed with a life-threatening disease that if left untreated will result in death. Your disease predominantly affects the blood, but there are many associated side effects that may be experienced as a result of this condition and its available therapies. These include hair loss, tiredness, weakness, weight loss, infections, psychological issues such as depression, anxiety and impairment of physical and sexual relations, fever, and fertility. Your ability to work and carry out normal daily activities will be disrupted. You are worried about the future with regards to issues such as treatment success, financial issues, and family relations. You don’t know who to tell, and what to tell them.

 Describes a patient undergoing treatment in the hospital, either induction or salvage therapies

You are receiving a treatment that requires you to stay alone in a hospital room for at least a month. You are at high risk of infection so visitors are limited. You require a blood transfusion every 2−3 days. You are being administered antibiotics, and treatment is given via a drip. You are subject to frequent blood tests and scans. You experience symptoms such as fatigue, diarrhea, nausea, pain, weight changes, and eating difficulties. Your family and social life have been disrupted, and you are unable to work. You feel nervous about the treatment outcomes.

 Describes a patient undergoing consolidation therapy

Your doctor has told you that the treatment has worked well so far. However, you now need more treatment to keep the disease from returning, requiring you to be at the hospital again for about 3 weeks, receiving blood transfusions every 2−3 days and treatment through a drip. When you’re no longer staying in the hospital, you do have to go back about twice a month for treatment and tests; and when you’re at home, you’re largely confined to the house. You still feel quite tired and experience symptoms during treatment, including fatigue, diarrhea, nausea, pain, weight changes, and eating difficulties. You are not able to perform your usual activities and are unable to work. You feel physically better, but are very worried about the disease coming back, or requiring a bone marrow transplant, both of which your doctor says are possibilities.

 Describes a patient just after receiving a bone marrow transplant

The treatment has worked so far, and you are now receiving a bone marrow transplant as the next stage of your treatment, which is meant to ensure that the disease does not return. You need to be hospitalized for more than a month in an isolation room. You are on a drip for most of the time and receive blood transfusions every 2−3 days. The side effects of the treatment are much worse than you imagined: you are incapacitated by symptoms such as pain, diarrhea, nausea, dry mouth, and feel very fatigued. At times you need assistance with eating and have to be fed through a tube. You are not able to perform your usual activities and are unable to work. You are very worried as the doctors have told you that you may die from the transplant; you feel nervous but are hopeful for the future.

 Describes a patient who experiences GvHD after transplant

You have now undergone a bone marrow transplant. This has been successful in its aim of reducing your disease; however, you have undergone a complication with this treatment. This has caused you to experience some additional side effects such as skin itchiness, diarrhea, poor mobility, and loss of appetite. As a result, you have been prescribed more medication and have to return to the hospital twice a week for blood tests and appointments. Your risk of infection is high; thus, contact with family and friends is limited. This also means that the time you spend outside the home must be reduced. Currently, you are allowed to be at home, but there is the chance of hospitalization if your condition worsens.

 Describes a patient in remission

Your treatment has now finished and you have been told that it has worked, but your doctor continues to monitor you every month and has warned you that there is still a risk that the disease could return and you’ll need further treatment. You have suffered a lot of side effects from which you have still not fully recovered: you are weak, very tired, and have a poor appetite. You start to resume your social life and usual activities, although in a very limited manner. You are relieved because the treatment worked but you still worry a lot about the disease coming back.

 Describes a patient that has been in complete remission and is now having a relapse. The patient is receiving best supportive care

You have responded to treatment so far but your disease has now returned. Your doctor has advised you that at this point, curing your disease is unlikely if not impossible. You are at home but unable to perform your usual daily activities. A routine is difficult to maintain as you have to return to the hospital every 2 weeks to receive a blood transfusion until your future care is decided. Some of the symptoms of your disease are returning, including fatigue, loss of appetite, and nausea. You are still at high risk of infection; thus, contact with family and friends is limited, along with the time that you are allowed to spend outside of your home. In this situation, you feel depressed and anxious. You are worried about the future and whether there is any treatment left available for your condition. You are considering end of life care.

 Describes a patient that has been in treatment and is not responding to it

Despite many treatments and suffering from their severe side effects, none of them have worked. The disease is no better, and you have been told you have no further treatment options. You are at home but unable to perform your usual daily activities. A routine is difficult to maintain as you have to return to the hospital every 2 weeks to receive a blood transfusion. Some of the symptoms of your disease are returning, including fatigue, loss of appetite, and nausea. You are still at high risk of infection; thus, contact with family and friends is limited, along with the time that you are allowed to spend outside of your home. In this situation, you feel depressed and anxious. You are worried about the future, and considering end of life care.

 Describes a functionally cured patient

Your treatment has worked, but your doctor continues to monitor you. You think your overall health is good and you’re physically able to perform most of your usual activities, although you may have trouble with physical relationships. You are relieved because the treatment worked, and you plan to go back to work in the near future. You still sometimes worry about the disease coming back.