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

被引:3
作者
Hulbert-Williams, Lee [1 ]
Hulbert-Williams, Nicholas J. [1 ]
Martins, Ana [2 ]
Storey, Lesley [3 ]
Bradley, Jennie [4 ]
O'Sullivan, Hatty [4 ]
Fern, Lorna A. [2 ]
Lawal, Maria [2 ]
Windsor, Rachael [5 ]
Gerrand, Craig [6 ]
Whelan, Jeremy S. [2 ]
Bennister, Lindsey [7 ]
Wells, Mary [8 ,9 ]
Taylor, Rachel M. [10 ,11 ]
机构
[1] Edge Hill Univ, Dept Psychol, Ormskirk L39 4QP, England
[2] Univ Coll London Hosp NHS Fdn Trust, Canc Clin Trials Unit, London NW1 2PG, England
[3] Anglia Ruskin Univ, Dept Psychol, Chelmsford CM1 1SQ, England
[4] Iqvia Ltd, Reading RG1 3JH, England
[5] Univ Coll London Hosp NHS Fdn Trust, Paediat Directorate, London NW1 2PG, England
[6] Royal Natl Orthopaed Hosp NHS Trust, Sarcoma Unit, Stanmore HA7 4LP, England
[7] St Lukes Hosp, Sheffield S2 1GQ, England
[8] Imperial Coll Healthcare NHS Trust, Nursing Directorate, London W2 1NY, England
[9] Imperial Coll London, Dept Surg & Canc, London SW7 5NH, England
[10] Univ Coll London Hosp NHS Fdn Trust, Ctr Nurse Midwife & Allied Hlth Profess Led Res CN, London NW1 2PG, England
[11] UCL, Dept Targeted Intervent, London NW1 2PG, England
关键词
soft tissue sarcoma; bone tumours; gastrointestinal stromal tumours; quality of life; patient-reported outcome; QUALITY-OF-LIFE; CLINICAL-TRIALS; YOUNG-PEOPLE; DEPRESSION; SYMPTOMS; ENGLAND;
D O I
10.3390/cancers16061096
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Simple Summary The Sarcoma Assessment Measure (SAM) is a special questionnaire for patients with sarcomas, a type of cancer. It was created with input from both patients and healthcare professionals and is meant to be used by professionals to better understand how sarcoma affects a patient's life. We tested the SAM on 762 patients who had different types of sarcomas and ranged in age from 13 to 82. We found that the SAM could be a useful tool for both researchers and healthcare professionals to assess how sarcoma symptoms impact a patient's life. However, more testing with a larger and more diverse group of patients is needed to be sure it is a good outcome measure in drug trials.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.
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页数:14
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