Table 1.

Health state descriptions for the four ASTS health states.

ASTS
(i) ASTS is an incurable cancer of no known cause. It often originates in the limbs or trunk and commonly spreads to the lungs, lymph nodes, and bones.
(ii) ASTS frequently presents with a painful swelling or lump. However, symptoms depend on which part of the body is affected and may include pain, cough, breathlessness, nausea, vomiting, constipation, and fatigue.
(iii) Family practitioners would refer patients to hospital for specialist tests that may include X-rays, ultrasound scans, MRI/CT scans, and a biopsy to make the diagnosis.
(iv) Treatment largely involves chemotherapy and/or radiotherapy with the intention of controlling the disease and improving symptoms.
(v) Chemotherapy is generally administered every 21–28 days as an outpatient or inpatient. During treatment, patients are at risk of infections which may result in more doctor visits and hospital admissions. There are four outcomes to treatment: complete response, partial response, stable disease, and progressive disease.
Progressive disease
(i) Patients with progressive disease have not responded to chemotherapy. They may receive further chemotherapy or palliative care and frequently experience weight loss, nausea/vomiting, breathlessness, cough, constipation, and fatigue.
(ii) They may need help with day-to-day activities, for example, washing/dressing, and are likely to experience pain needing strong pain killers.
(iii) The chance of surviving beyond 12 months is rare and patients often experience higher levels of anxiety/depression for which they may receive medication.
Stable disease
(i) Patients with stable disease will almost certainly relapse within 4–9 months. Their cancer is no longer progressing, but they continue to experience symptoms.
(ii) During treatment they may lose weight and have nausea/vomiting, constipation, and fatigue.
(iii) They may require help performing day-to-day activities and be in some pain for which they require pain killers.
(iv) The chance of surviving beyond 16 months is 40–60% and patients are also likely to be anxious and depressed for which they may receive medication.
Partial response
(i) Patients in partial response will almost certainly relapse within 5–9 months.
(ii) After treatment, patients will have an improvement in pain, other symptoms, and level of activity, but less so than those with complete response.
(iii) During treatment patients may lose weight and have nausea/vomiting, constipation, and fatigue.
(iv) The chance of surviving beyond 18 months is 40–60%.
Complete response
(i) Patients in complete response will almost certainly relapse within 10–18 months.
(ii) After treatment, patients are likely to have minimal pain and few symptoms and be active.
(iii) During treatment they may lose weight and have nausea/vomiting, constipation, and fatigue.
(iv) The chance of surviving beyond 2 years is 40–60%.