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Elicitation of health state utilities in soft tissue sarcoma

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Abstract

Purpose

Soft tissue sarcomas (STS) are uncommon tumours with varying histological subtypes. There is a paucity of available data concerning the quality-of-life (QoL) impact of STS which could be used to support economic evaluation of future treatments. This study aimed to elicit societal utility values for health states that depict the impact of STS and its treatment.

Methods

Following the development of eight health state vignettes, a sample of 100 members of the UK general public participated in a valuation exercise to elicit utility values using the time trade-off procedure.

Results

The treatment response state was valued as the least burdensome by participants followed by the prospect of stable disease (mean utility value: 0.736 SD 0.21). Serious adverse events were associated with a range of disutilities from −0.236 for grade III/IV pain to −0.357 for grade III/IV nausea/vomiting. Progressive disease was deemed the least desirable outcome and was associated with a substantial decline in utility (−0.473).

Conclusions

Findings suggest advanced STS are associated with significant burden for individuals. Treatment-related adverse events were seen as debilitating, however, progression represents an enormous challenge to QoL. This illustrates the significant value to individuals of extending the progression free survival period.

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Acknowledgments

We would like to acknowledge the following clinicians who participated in the study: Dr. M Leahy, Christies Hospital, Manchester, UK; Prof. JY Blay, Centre Léon Bérard, France; Dr. C Benson, The Royal Marsden, UK; Ms C. Propert-Lewis, The Royal Marsden, UK; Ms A Dunlop, The Royal Marsden, UK; Dr J White, The Beatson West of Scotland Cancer Centre, UK; Prof. Schoffski, University Hospitals Leuven, Belgium; Dr P Craft, Canberra Hospital, Australia; Dr J Desai, The University of Melbourne, Australia; Prof D Cella, Northwestern University, US. We would also like to thank Maureen Neary for her contribution to the study. Oxford Outcomes were paid a fixed fee by GSK to conduct this research.

Author information

Authors and Affiliations

  1. Oxford Outcomes, ICON plc Company, Oxford, UK

    Sarah L. Shingler, Paul Swinburn & Andrew Lloyd

  2. GlaxoSmithKline, Uxbridge, UK

    Jose Diaz, Robert Isbell & Stephanie Manson

  3. Sarcoma Unit, Royal Marsden Hospital, London, UK

    Charlotte Benson

Authors
  1. Sarah L. Shingler
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  2. Paul Swinburn
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  3. Andrew Lloyd
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  4. Jose Diaz
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  5. Robert Isbell
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  6. Stephanie Manson
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  7. Charlotte Benson
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Corresponding author

Correspondence to Sarah L. Shingler.

Appendix: Health states used in valuation exercise

Appendix: Health states used in valuation exercise

Stable disease

You have a life-threatening illness which due to your treatment is not getting any worse. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You experience some shortness of breath when you move around.

You have some difficulty in walking long distances and you become tired easily. You need to rest more often than before you became ill.

You are able to wash and dress yourself and do jobs around the home. Shopping and other daily activities take more effort than before you were ill.

You are able to socialise with friends and family, but sometimes have to cut it short due to your illness.

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

Response state

You have a life-threatening illness which is responding to treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You have some difficulty in walking long distances and you become tired easily. You need to rest more often than before you were ill.

You are able to wash and dress yourself and do jobs around the home. Shopping and other daily activities take more effort than before you were ill.

You are able to socialise with friends and family, but sometimes have to cut it short due to your illness.

You experience some anxiety but you are pleased that you are responding to treatment. You sometimes feel worried about dying and how your loved ones will manage without you.

Progressed disease states

You have a life-threatening illness and your condition is getting worse despite undergoing rounds of treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost your appetite and have lost some weight.

You experience pain which means you need to take regular pain medication to control it. You frequently become short of breath and sometimes cough up blood.

You experience difficulty in moving around and are unable to walk long distances. You feel a constant need to rest.

You experience difficulty in washing and dressing independently. You are unable to do jobs around the house or other daily activities. You depend upon others to do your shopping and are unable to do your usual daily activities.

You are often too tired to enjoy spending time with friends and family. Your condition can affect your relationship with other people.

You are depressed and often think about dying. You worry about how your loved ones will manage without you.

Stable disease with fatigue (grade III/IV)

You have a life-threatening illness which is not getting any worse on treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You experience some shortness of breath when you move around.

You feel extremely tired and weak all over. Your tiredness is not relieved by rest. At times you are frustrated at being too tired to do the things you used to do easily.

You struggle to wash and dress yourself and require help to do jobs around the home. Shopping and other daily activities take considerably more effort than before you were ill.

You find it difficult to socialise with friends and family, and frequently have to cut it short due to your illness.

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

Stable disease with pain (grade III/IV)

You have a life-threatening illness which is not getting any worse on treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You experience some shortness of breath when you move around.

You experience severe pain which significantly interferes with your daily activities. Regular painkillers can help but they do not always fully relieve the pain.

You are unable to walk long distances and you become tired easily. You need to rest more often than before you were ill.

You are able to wash and dress yourself and do jobs around the home when your pain is managed. Pain limits your ability to go shopping and complete other daily activities, which take more effort than before you were ill.

You are able to socialise with friends and family in your home, but sometimes have to cut it short due to your illness and pain.

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

Stable disease with diarrhoea (grade III/IV)

You have a life-threatening illness which is not getting any worse on treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You experience some shortness of breath when you move around.

You have developed frequent severe diarrhoea that requires you to find a toilet at least six times a day. You are taking prescribed medicine for the diarrhoea and to replace the water you have lost. You are at risk of being admitted to hospital if you cannot maintain your hydration. You are at risk of these symptoms reoccurring following your next treatment.

You are unable to walk long distances and you can become tired easily. You need to rest more often than before you were ill.

You are able to wash and dress yourself and do jobs around the home. You are unable to go shopping, and other daily activities take more effort than before you were ill.

You are able to socialise with friends and family in your home, but sometimes have to cut it short due to your diarrhoea and tiredness.

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

Stable disease with dyspnoea (grade III/IV)

You have a life-threatening illness which is not getting any worse on treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost some weight.

You are very short of breath and frequently have trouble breathing. You can find it hard to catch your breath when you are moving around the house or going about your normal activities. You experience a dry cough.

You are unable to walk long distances and you can become tired easily. You need to rest more often than before you were ill.

You require some help to wash and dress yourself and are unable to do jobs around the home. You rely on others to do your shopping and other daily activities.

You are able to socialise with friends and family in your home, but sometimes have to cut it short due to your shortness of breath

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

Stable disease with nausea and vomiting (grade III/IV)

You have a life-threatening illness which is not getting any worse on treatment. You have undergone an operation which has left you with some unsightly scarring. You have lost your appetite and have lost some weight.

You experience some shortness of breath when you move around.

You feel very sick with nausea and vomit regularly. You are receiving prescribed medicine for the vomiting and to replenish the water you have lost. You are at risk of being admitted to hospital if you cannot maintain your hydration. You are at risk of these symptoms reoccurring following your next treatment.

You are unable to walk long distances and you can become tired easily. You need to rest more often than before you were ill.

You struggle to wash and dress yourself and do jobs around the home. You rely on others to do your shopping and other daily activities.

You are able to socialise with friends and family in your home, but sometimes have to cut it short due to your nausea and vomiting.

You feel anxious because of your condition, and you can sometimes become depressed. You sometimes feel worried about dying and how your loved ones will manage without you.

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Shingler, S.L., Swinburn, P., Lloyd, A. et al. Elicitation of health state utilities in soft tissue sarcoma. Qual Life Res 22, 1697–1706 (2013). https://doi.org/10.1007/s11136-012-0301-9

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