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

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 question...

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Bibliographic Details
Published in:Quality of life research 2020-08, Vol.29 (8), p.2287-2297
Main Authors: Martins, Ana, Bennister, Lindsey, Fern, Lorna A., Gerrand, Craig, Onasanya, Maria, Storey, Lesley, Wells, Mary, Whelan, Jeremy S., Windsor, Rachael, Woodford, Julie, Taylor, Rachel M.
Format: Article
Language:English
Subjects:
Adolescent
Adult
Aged
Aged, 80 and over
Content analysis
Female
Gastrointestinal cancer
Humans
Male
Medicine
Medicine & Public Health
Middle Aged
Patient Reported Outcome Measures
Patients
Public Health
Quality of Life - psychology
Quality of Life Research
Questionnaires
Sarcoma
Sarcoma - psychology
Sociology
Surveys and Questionnaires
Tumors
Young Adult
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Summary: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
ISSN:0962-9343
1573-2649
DOI:10.1007/s11136-020-02481-x