The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure

Author:

Hulbert-Williams Lee1ORCID,Hulbert-Williams Nicholas J.1,Martins Ana2,Storey Lesley3,Bradley Jennie4ORCID,O’Sullivan Hatty4,Fern Lorna A.2ORCID,Lawal Maria2,Windsor Rachael5,Gerrand Craig6,Whelan Jeremy S.2,Bennister Lindsey7,Wells Mary89,Taylor Rachel M.1011ORCID

Affiliation:

1. Department of Psychology, Edge Hill University, Ormskirk L39 4QP, UK

2. Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK

3. Department of Psychology, Anglia Ruskin University, Chelmsford CM1 1SQ, UK

4. Iqvia Ltd., Reading RG1 3JH, UK

5. Paediatric Directorate, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK

6. Sarcoma Unit, The Royal National Orthopaedic Hospital NHS Trust, Stanmore HA7 4LP, UK

7. St Luke’s Hospice, Sheffield S2 1GQ, UK

8. Nursing Directorate, Imperial College Healthcare NHS Trust, London W2 1NY, UK

9. Department of Surgery and Cancer, Imperial College London, London SW7 5NH, UK

10. Centre for Nurse, Midwife and Allied Health Profession Led Research (CNMAR), University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK

11. Department of Targeted Intervention, University College London, London NW1 2PG, UK

Abstract

The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.

Funder

Sarcoma UK

UCLH Charity

Teenage Cancer Trust

Imperial Biomedical Research Centre

Publisher

MDPI AG

Reference46 articles.

1. Bleyer, A., Barr, R., Ries, L., Whelan, J., and Ferrari, A. (2017). Cancer in Adolescents and Young Adults, Springer. [2nd ed.].

2. Ferrari, A., Whelan, J., Ries, L., Barr, R., and Bleyer, A. (2017). Cancer in Adolescents and Young Adults, Springer. [2nd ed.].

3. Patient Experience After Lower Extremity Amputation for Sarcoma in England: A National Survey;Furtado;Disabil. Rehabil.,2016

4. Classification and Incidence of Cancers in Adolescents and Young Adults in England 1979–1997;Birch;Br. J. Cancer,2002

5. Experiences of Fear of Recurrence in Patients with Sarcoma;Fern;J. Psychosoc. Oncol. Res. Pract.,2023

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