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29-03-2020

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

Auteurs: Ana Martins, Lindsey Bennister, Lorna A. Fern, Craig Gerrand, Maria Onasanya, Lesley Storey, Mary Wells, Jeremy S. Whelan, Rachael Windsor, Julie Woodford, Rachel M. Taylor

Gepubliceerd in: Quality of Life Research | Uitgave 8/2020

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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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Literatuur
1.
go back to reference Furtado, S., Briggs, T., Fulton, J., Russell, L., Grimer, R., Wren, V., et al. (2016). Patient experience after lower extremity amputation for sarcoma in England: a national survey. Disability & Rehabilitation,39, 1171–1190.CrossRef Furtado, S., Briggs, T., Fulton, J., Russell, L., Grimer, R., Wren, V., et al. (2016). Patient experience after lower extremity amputation for sarcoma in England: a national survey. Disability & Rehabilitation,39, 1171–1190.CrossRef
2.
go back to reference Kwong, T. N. K., Furtado, S., & Gerrand, C. (2014). What do we know about survivorship after treatment for extremity sarcoma? A systematic review. European Journal of Surgical Oncology,40(9), 1109–1124.CrossRef Kwong, T. N. K., Furtado, S., & Gerrand, C. (2014). What do we know about survivorship after treatment for extremity sarcoma? A systematic review. European Journal of Surgical Oncology,40(9), 1109–1124.CrossRef
3.
go back to reference Storey, L., Fern, L. A., Martins, A., Wells, M., Bennister, L., Gerrand, C., et al. (2019). A critical review of the impact of sarcoma on psychosocial wellbeing. Sarcoma,2019, 9730867.CrossRef Storey, L., Fern, L. A., Martins, A., Wells, M., Bennister, L., Gerrand, C., et al. (2019). A critical review of the impact of sarcoma on psychosocial wellbeing. Sarcoma,2019, 9730867.CrossRef
4.
go back to reference Davis, A. M., Bell, R. S., Badley, E. M., Yoshida, K., & Williams, J. I. (1999). Evaluating functional outcome in patients with lower extremity sarcoma. Clinical Orthopaedics & Related Research.,358, 90–100.CrossRef Davis, A. M., Bell, R. S., Badley, E. M., Yoshida, K., & Williams, J. I. (1999). Evaluating functional outcome in patients with lower extremity sarcoma. Clinical Orthopaedics & Related Research.,358, 90–100.CrossRef
5.
go back to reference Skalicky, A. M., Ghate, S. R., Perez, J. R., & Rentz, A. M. (2017). Results of a qualitative study to develop a patient reported outcome measure for patients with 4 subtypes of soft tissue sarcoma. Sarcoma,2017, 6868030.CrossRef Skalicky, A. M., Ghate, S. R., Perez, J. R., & Rentz, A. M. (2017). Results of a qualitative study to develop a patient reported outcome measure for patients with 4 subtypes of soft tissue sarcoma. Sarcoma,2017, 6868030.CrossRef
6.
go back to reference Bekkering, W. P., Vlieland, T. P. M. V., Koopman, H. M., Schaap, G. R., Schreuder, H. W. B., Beishuizen, A., et al. (2009). The Bt-DUX: development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor. Pediatric Blood & Cancer,53(3), 348–355.CrossRef Bekkering, W. P., Vlieland, T. P. M. V., Koopman, H. M., Schaap, G. R., Schreuder, H. W. B., Beishuizen, A., et al. (2009). The Bt-DUX: development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor. Pediatric Blood & Cancer,53(3), 348–355.CrossRef
9.
go back to reference Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute,85(5), 365–376.CrossRef Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute,85(5), 365–376.CrossRef
10.
go back to reference Davidge, K., Bell, R., Ferguson, P., Turcotte, R., Wunder, J., & Davis, A. M. (2009). Patient expectations for surgical outcome in extremity soft tissue sarcoma. Journal of Surgical Oncology,100(5), 375–381.CrossRef Davidge, K., Bell, R., Ferguson, P., Turcotte, R., Wunder, J., & Davis, A. M. (2009). Patient expectations for surgical outcome in extremity soft tissue sarcoma. Journal of Surgical Oncology,100(5), 375–381.CrossRef
11.
go back to reference Fauske, L., Bondevik, H., Bruland, O. S., & Ozakinci, G. (2015). Negative and positive consequences of cancer treatment experienced by long-term osteosarcoma survivors: A qualitative study. Anticancer Research,35(11), 6081–6090.PubMed Fauske, L., Bondevik, H., Bruland, O. S., & Ozakinci, G. (2015). Negative and positive consequences of cancer treatment experienced by long-term osteosarcoma survivors: A qualitative study. Anticancer Research,35(11), 6081–6090.PubMed
12.
go back to reference Novakovic, B., Fears, T. R., Wexler, L. H., McClure, L. L., Wilson, D. L., McCalla, J. L., et al. (1996). Experiences of cancer in children and adolescents. Cancer Nursing,19(1), 54–59.CrossRef Novakovic, B., Fears, T. R., Wexler, L. H., McClure, L. L., Wilson, D. L., McCalla, J. L., et al. (1996). Experiences of cancer in children and adolescents. Cancer Nursing,19(1), 54–59.CrossRef
13.
go back to reference Fauske, L., Bruland, O. S., Grov, E. K., & Bondevik, H. (2015). Cured of primary bone cancer, but at what cost: A qualitative study of functional impairment and lost opportunities. Sarcoma,2015, 1–10.CrossRef Fauske, L., Bruland, O. S., Grov, E. K., & Bondevik, H. (2015). Cured of primary bone cancer, but at what cost: A qualitative study of functional impairment and lost opportunities. Sarcoma,2015, 1–10.CrossRef
14.
go back to reference Fauske, L., Lorem, G., Grov, E. K., & Bondevik, H. (2016). Changes in the body image of bone sarcoma survivors following surgical treatment: A qualitative study. Journal of Surgical Oncology,113(2), 229–234.CrossRef Fauske, L., Lorem, G., Grov, E. K., & Bondevik, H. (2016). Changes in the body image of bone sarcoma survivors following surgical treatment: A qualitative study. Journal of Surgical Oncology,113(2), 229–234.CrossRef
16.
go back to reference Parsons, J. A., Eakin, J. M., Bell, R. S., Franche, R., & Davis, A. M. (2008). 'So, are you back to work yet?' Re-conceptualizing 'work' and 'return to work' in the context of primary bone cancer. Social Science & Medicine,67(11), 1826–1836.CrossRef Parsons, J. A., Eakin, J. M., Bell, R. S., Franche, R., & Davis, A. M. (2008). 'So, are you back to work yet?' Re-conceptualizing 'work' and 'return to work' in the context of primary bone cancer. Social Science & Medicine,67(11), 1826–1836.CrossRef
17.
go back to reference Department of Health. (2010). Equity and excellence: Liberating the NHS. London: The Stationery Office Ltd. Department of Health. (2010). Equity and excellence: Liberating the NHS. London: The Stationery Office Ltd.
18.
go back to reference Taylor, R. M., Gibson, F., & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: A critical review of the literature. Journal of Clinical Nursing,17, 3083–3091.CrossRef Taylor, R. M., Gibson, F., & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: A critical review of the literature. Journal of Clinical Nursing,17, 3083–3091.CrossRef
19.
go back to reference Lawshe, C. H. (1975). A quantitative approach to content validity. Personnel Psychology,28, 563–575.CrossRef Lawshe, C. H. (1975). A quantitative approach to content validity. Personnel Psychology,28, 563–575.CrossRef
20.
go back to reference Taylor, R. M., Fern, L. A., Solanki, A., Hooker, L., Carluccio, A., Pye, J., et al. (2015). Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer. Health and Quality of Life Outcomes,13, 107.CrossRef Taylor, R. M., Fern, L. A., Solanki, A., Hooker, L., Carluccio, A., Pye, J., et al. (2015). Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer. Health and Quality of Life Outcomes,13, 107.CrossRef
21.
go back to reference Bredart, A., Marrel, A., Abetz-Webb, L., Lasch, K., & Acquadro, C. (2014). Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients' experience. Health & Quality of Life Outcomes,12, 15.CrossRef Bredart, A., Marrel, A., Abetz-Webb, L., Lasch, K., & Acquadro, C. (2014). Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients' experience. Health & Quality of Life Outcomes,12, 15.CrossRef
22.
go back to reference Polit, D. F., Beck, C. T., & Owen, S. V. (2007). Is the CVI an acceptable indicator of content validity? Appraisal and recommendations. Research in Nursing & Health,30(4), 459–467.CrossRef Polit, D. F., Beck, C. T., & Owen, S. V. (2007). Is the CVI an acceptable indicator of content validity? Appraisal and recommendations. Research in Nursing & Health,30(4), 459–467.CrossRef
23.
go back to reference Schilling, L. S., Dixon, J. K., Knafl, K. A., Grey, M., Ives, B., & Lynn, M. R. (2007). Determining content validity of a self-report instrument for adolescents using a heterogeneous expert panel. Nursing Research,56(5), 361–366.CrossRef Schilling, L. S., Dixon, J. K., Knafl, K. A., Grey, M., Ives, B., & Lynn, M. R. (2007). Determining content validity of a self-report instrument for adolescents using a heterogeneous expert panel. Nursing Research,56(5), 361–366.CrossRef
24.
go back to reference Beatty, P. C., & Willis, G. B. (2007). Research synthesis: The practice of cognitive interviewing. Public Opinion Quarterly,71(2), 287–311.CrossRef Beatty, P. C., & Willis, G. B. (2007). Research synthesis: The practice of cognitive interviewing. Public Opinion Quarterly,71(2), 287–311.CrossRef
25.
go back to reference Martins, A., Whelan, J. S., Bennister, L., Fern, L. A., Gerrand, C., Onasanya, M., et al. (Under review). Experiences of patients with soft-tissue sarcoma: qualitative study. Sarcoma. Martins, A., Whelan, J. S., Bennister, L., Fern, L. A., Gerrand, C., Onasanya, M., et al. (Under review). Experiences of patients with soft-tissue sarcoma: qualitative study. Sarcoma.
26.
go back to reference Martins, A., Whelan, J. S., Bennister, L., Fern, L. A., Gerrand, C., Onasanya, M., et al. (2019). Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK. British Medical Journal Open,9(9), e028693. Martins, A., Whelan, J. S., Bennister, L., Fern, L. A., Gerrand, C., Onasanya, M., et al. (2019). Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK. British Medical Journal Open,9(9), e028693.
27.
go back to reference Medical, R. C. (2008). Developing and evaluating complex interventions: New guidance. International Journal of Nursing Studies.,50, 587–592. Medical, R. C. (2008). Developing and evaluating complex interventions: New guidance. International Journal of Nursing Studies.,50, 587–592.
28.
go back to reference Crist, J. V., & Grunfeld, E. A. (2013). Factors reported to influence fear of recurrence in cancer patients: A systematic review. Psycho-oncology,22(5), 978–986.CrossRef Crist, J. V., & Grunfeld, E. A. (2013). Factors reported to influence fear of recurrence in cancer patients: A systematic review. Psycho-oncology,22(5), 978–986.CrossRef
29.
go back to reference Hall, D. L., Luberto, C. M., Philpotts, L. L., Song, R., Park, E. R., & Yeh, G. Y. (2018). Mind-body interventions for fear of cancer recurrence: A systematic review and meta-analysis. Psycho-oncology,27(11), 2546–2558.CrossRef Hall, D. L., Luberto, C. M., Philpotts, L. L., Song, R., Park, E. R., & Yeh, G. Y. (2018). Mind-body interventions for fear of cancer recurrence: A systematic review and meta-analysis. Psycho-oncology,27(11), 2546–2558.CrossRef
30.
go back to reference Koch, L., Jansen, L., Brenner, H., & Arndt, V. (2013). Fear of recurrence and disease progression in long-term (%3e= 5 years) cancer survivors: A systematic review of quantitative studies. Psycho-oncology,22(1), 1–11.CrossRef Koch, L., Jansen, L., Brenner, H., & Arndt, V. (2013). Fear of recurrence and disease progression in long-term (%3e= 5 years) cancer survivors: A systematic review of quantitative studies. Psycho-oncology,22(1), 1–11.CrossRef
31.
go back to reference Simard, S., Thewes, B., Humphris, G., Dixon, M., Hayden, C., Mireskandari, S., et al. (2013). Fear of cancer recurrence in adult cancer survivors: A systematic review of quantitative studies. Journal of Cancer Survivorship,7(3), 300–322.CrossRef Simard, S., Thewes, B., Humphris, G., Dixon, M., Hayden, C., Mireskandari, S., et al. (2013). Fear of cancer recurrence in adult cancer survivors: A systematic review of quantitative studies. Journal of Cancer Survivorship,7(3), 300–322.CrossRef
32.
go back to reference Walter, F. M., Penfold, C., Joannides, A., Saji, S., Johnson, M., Watts, C., et al. (2019). Missed opportunities for diagnosing brain tumours in primary care: A qualitative study of patient experiences. British Journal of General Practice,69(681), e224–e235.CrossRef Walter, F. M., Penfold, C., Joannides, A., Saji, S., Johnson, M., Watts, C., et al. (2019). Missed opportunities for diagnosing brain tumours in primary care: A qualitative study of patient experiences. British Journal of General Practice,69(681), e224–e235.CrossRef
33.
go back to reference Zhou, Y., van Melle, M., Singh, H., Hamilton, W., Lyratzopoulos, G., & Walter, F. M. (2019). Quality of the diagnostic process in patients presenting with symptoms suggestive of bladder or kidney cancer: A systematic review. British Medical Journal Open,9(10), e029143. Zhou, Y., van Melle, M., Singh, H., Hamilton, W., Lyratzopoulos, G., & Walter, F. M. (2019). Quality of the diagnostic process in patients presenting with symptoms suggestive of bladder or kidney cancer: A systematic review. British Medical Journal Open,9(10), e029143.
34.
go back to reference Fern, L. A., Martins, A., & Taylor, R. M. (2019). The diagnostic experience of sarcoma patients; secondary analysis of the SAM study. Sarcoma UK, SUK,203, 2018. Fern, L. A., Martins, A., & Taylor, R. M. (2019). The diagnostic experience of sarcoma patients; secondary analysis of the SAM study. Sarcoma UK, SUK,203, 2018.
Metagegevens
Titel
Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM)
Auteurs
Ana Martins
Lindsey Bennister
Lorna A. Fern
Craig Gerrand
Maria Onasanya
Lesley Storey
Mary Wells
Jeremy S. Whelan
Rachael Windsor
Julie Woodford
Rachel M. Taylor
Publicatiedatum
29-03-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02481-x

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