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Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM)

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Abstract

Purpose

The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma—the Sarcoma Assessment Measure (SAM).

Methods and results

The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13–82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 ‘items’ which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of < .33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four.

Conclusion

SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients.

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Acknowledgements

Rachel Taylor is a National Institute for Health Research (NIHR) Senior Nurse Research Leader. The views expressed in this article are those of the author and not necessarily those of the NIHR, or the Department of Health and Social Care. The authors would like to thank the following sarcoma teams for recruiting to the study: Dr Fiona Cowie (Beatson Oncology Centre, Glasgow), Dr Helen Hatcher (Cambridge University Hospitals), Dr Dan Stark (Leeds Teaching Hospitals NHS Foundation Trust), Dr Sherron Furtado (Newcastle Upon Tyne Hospitals), Suriya Kirkpatrick (North Bristol NHS Trust), Mr Robert Ashford (Nottingham University Hospitals NHS Foundation Trust and University Hospitals Leicester NHS Trust), Clare McKenzie (Oxford University Hospitals NHS Foundation Trust), Jayne Edwards and Mr Paul Cool (Robert Jones and Agnes Hunt Orthopaedic Hospital), Julie Woodford (Royal National Orthopaedic Hospital), Mr Jonathan Gregory (Royal Orthopaedic Hospital), Dr Robin Young (Sheffield Teaching Hospitals NHS Trust), Dr Mariam Jafri (University Hospitals Birmingham NHS Foundation Trust), Dr Paula Wilson (University Hospitals Bristol NHS Trust), Rebecca Burt (University Hospitals Coventry and Warwickshire NHS Trust), Dr Nicola Keay (University Hospitals Southampton NHS Foundation Trust), Sarah Massey (Royal Liverpool and Broadgreen University Hospitals), Mr Amit Kumar (Central Manchester University Hospital NHS Trust), Prof Jeremy Whelan (University College London Hospitals NHS Foundation Trust).

Funding

This paper presents independent research funded by Sarcoma UK. The views expressed are those of the author(s) and not necessarily those of Sarcoma UK.

Author information

Authors and Affiliations

  1. Cancer Division, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UK

    Ana Martins, Lorna A. Fern, Jeremy S. Whelan, Rachael Windsor & Rachel M. Taylor

  2. Patient Representative, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UK

    Lindsey Bennister & Maria Onasanya

  3. London Sarcoma Service, Royal National Orthopaedic Hospital, Stanmore, Middlesex, HA7 4LP, UK

    Craig Gerrand & Julie Woodford

  4. Department of Psychology, Birmingham City University, Curzon Building, Birmingham, B4 7BD, UK

    Lesley Storey

  5. Nursing Directorate, Imperial College Healthcare NHS Trust, Charing Cross Hospital, London, W6 8RF, UK

    Mary Wells

  6. UCLH Cancer Clinical Trials Unit, 1st Floor East, 250 Euston Road, London, NW1 2PG, UK

    Rachel M. Taylor

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  1. Ana Martins
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  2. Lindsey Bennister
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  3. Lorna A. Fern
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  4. Craig Gerrand
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  5. Maria Onasanya
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  11. Rachel M. Taylor
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Contributions

All the authors were involved in developing the protocol. AM, RMT coordinated the running of the study and were responsible for data acquisition. All the authors contributed to the analysis. RMT drafted the manuscript. All authors critically revised and approved the final manuscript.

Corresponding author

Correspondence to Rachel M. Taylor.

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Martins, A., Bennister, L., Fern, L.A. et al. Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM). Qual Life Res 29, 2287–2297 (2020). https://doi.org/10.1007/s11136-020-02481-x

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