Skip to main content
Top
Published in: BMC Cancer 1/2015

Open Access 01-12-2015 | Research article

Improving the assessment of quality of life in the clinical care of myeloma patients: the development and validation of the Myeloma Patient Outcome Scale (MyPOS)

Authors: Thomas R Osborne, Christina Ramsenthaler, Stephen A Schey, Richard J Siegert, Polly M Edmonds, Irene J Higginson

Published in: BMC Cancer | Issue 1/2015

Login to get access

Abstract

Background

Multiple myeloma is an incurable cancer with a rising incidence globally. Less toxic treatments are increasingly available, so patients are living longer and treatment decisions are increasingly guided by QOL concerns. There is no QOL assessment tool designed specifically for use in the clinical care of people with myeloma. This study aimed to develop and test the psychometric properties of a new myeloma-specific QOL questionnaire designed specifically for use in the clinical setting – the MyPOS.

Methods

The MyPOS was developed using findings from a previously reported literature review and qualitative study. The prototype MyPOS was pretested using cognitive interviews in a purposive sample of myeloma patients and refined prior to field testing. The psychometric properties of the MyPOS were evaluated in a multi-centre, cross sectional survey of myeloma patients recruited from 14 hospital trusts across England.

Results

The prototype MyPOS contained 33 structured and open questions. These were refined using cognitive interviews with 12 patients, and the final MyPOS contained 30 items taken forward for field-testing. The cross-sectional survey recruited 380 patients for the MyPOS validation. Mean time to complete was 7 minutes 19 seconds with 0.58% missing MyPOS items overall. Internal consistency was high (α = 0.89). Factor analysis confirmed three subscales: Symptoms & Function; Emotional Response and Healthcare Support. MyPOS total scores were higher (worse QOL) in those with active disease compared to those in the stable or plateau phase (F = 11.89, p < 0.001) and were worse in those currently receiving chemotherapy (t = 3.42, p = 0.001). Scores in the Symptoms & Function subscale were higher (worse QOL) in those with worse ECOG performance status (F = 31.33, p < 0.001). Good convergent and discriminant validity were demonstrated.

Conclusions

The MyPOS is the first myeloma-specific QOL questionnaire designed specifically for use in the clinical setting. The MyPOS is based on qualitative enquiry and the issues most important to patients. It is a brief, comprehensive and acceptable tool that is reliable and valid on psychometric testing. The MyPOS can now be used to support clinical decision making in the routine care of myeloma patients.
Appendix
Available only for authorised users
Literature
2.
go back to reference Parkin M, Bray F, Ferlay J, Pisani P. Global cancer statistics, 2002. CA Cancer J Clin. 2005;55:74–108.CrossRefPubMed Parkin M, Bray F, Ferlay J, Pisani P. Global cancer statistics, 2002. CA Cancer J Clin. 2005;55:74–108.CrossRefPubMed
3.
go back to reference Gulbrandsen N, Wisloff F, Brinch L, Carlson K, Dahl IM, Gimsing P, et al. Health-related quality of life in multiple myeloma patients receiving high-dose chemotherapy with autologous blood stem-cell support. Med Oncol. 2001;18(1):65–77.CrossRefPubMed Gulbrandsen N, Wisloff F, Brinch L, Carlson K, Dahl IM, Gimsing P, et al. Health-related quality of life in multiple myeloma patients receiving high-dose chemotherapy with autologous blood stem-cell support. Med Oncol. 2001;18(1):65–77.CrossRefPubMed
4.
go back to reference Sherman AC. Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplant. 2004;33:955–62.CrossRefPubMed Sherman AC. Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplant. 2004;33:955–62.CrossRefPubMed
5.
go back to reference Uyl-de Groot CA, Buijt I, Gloudemans IJM, Ossenkoppele GJ, Berg HP, Huijgens PC. Health related quality of life in patients with multiple myeloma undergoing a double transplantation. Eur J Haematol. 2005;74(2):136–43.CrossRefPubMed Uyl-de Groot CA, Buijt I, Gloudemans IJM, Ossenkoppele GJ, Berg HP, Huijgens PC. Health related quality of life in patients with multiple myeloma undergoing a double transplantation. Eur J Haematol. 2005;74(2):136–43.CrossRefPubMed
6.
go back to reference Sirohi B, Powles R. Epidemiology and outcomes research for MGUS, myeloma and amyloidosis. Eur J Cancer. 2006;42:1671–8.CrossRefPubMed Sirohi B, Powles R. Epidemiology and outcomes research for MGUS, myeloma and amyloidosis. Eur J Cancer. 2006;42:1671–8.CrossRefPubMed
7.
go back to reference Sherman AC, Simonton S, Latif U, Plante TG, Anaissie EJ. Changes in quality-of-life and psychosocial adjustment among multiple myeloma patients treated with high-dose melphalan and autologous stem cell transplantation. Biol Blood Marrow Transplant. 2009;15(1):12–20.CrossRefPubMed Sherman AC, Simonton S, Latif U, Plante TG, Anaissie EJ. Changes in quality-of-life and psychosocial adjustment among multiple myeloma patients treated with high-dose melphalan and autologous stem cell transplantation. Biol Blood Marrow Transplant. 2009;15(1):12–20.CrossRefPubMed
8.
go back to reference Osborne TR, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol. 2012;89(6):436–57.CrossRef Osborne TR, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol. 2012;89(6):436–57.CrossRef
9.
go back to reference Cocks K, Cohen D, Wisloff F, Sezer O, Lee S, Hippe E, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. Eur J Cancer. 2007;43(11):1670–9.CrossRefPubMed Cocks K, Cohen D, Wisloff F, Sezer O, Lee S, Hippe E, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. Eur J Cancer. 2007;43(11):1670–9.CrossRefPubMed
10.
go back to reference Stead ML, Brown JM, Velikova G, Kaasa S, Wisloff F, Child JA, et al. Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Br J Haematol. 1999;104(3):605–11.CrossRefPubMed Stead ML, Brown JM, Velikova G, Kaasa S, Wisloff F, Child JA, et al. Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Br J Haematol. 1999;104(3):605–11.CrossRefPubMed
11.
go back to reference Wisloff F, Eika S, Hippe E, Hjorth M, Holmberg E, Kaasa S, et al. Measurement of health-related quality of life in multiple myeloma. Nordic Myeloma Study Group. Br J Haematol. 1996;92(3):604–13.CrossRefPubMed Wisloff F, Eika S, Hippe E, Hjorth M, Holmberg E, Kaasa S, et al. Measurement of health-related quality of life in multiple myeloma. Nordic Myeloma Study Group. Br J Haematol. 1996;92(3):604–13.CrossRefPubMed
12.
go back to reference Wagner LI, Robinson DJ, Weiss M, Katz M, Greipp P, Fonseca R, et al. Content development for the Functional Assessment of Cancer Therapy-Multiple Myeloma (FACT-MM): use of qualitative and quantitative methods for scale construction. J Pain Symptom Manage. 2012;43(6):1094–104.CrossRefPubMedPubMedCentral Wagner LI, Robinson DJ, Weiss M, Katz M, Greipp P, Fonseca R, et al. Content development for the Functional Assessment of Cancer Therapy-Multiple Myeloma (FACT-MM): use of qualitative and quantitative methods for scale construction. J Pain Symptom Manage. 2012;43(6):1094–104.CrossRefPubMedPubMedCentral
13.
go back to reference Osborne TR, Ramsenthaler C, de Wolf-Linder S, Schey SA, Siegert RJ, Edmonds PM, et al. What matters most to people with multiple myeloma? A qualitative study of views on quality of life. BMC Cancer. 2014;14:496.CrossRefPubMedPubMedCentral Osborne TR, Ramsenthaler C, de Wolf-Linder S, Schey SA, Siegert RJ, Edmonds PM, et al. What matters most to people with multiple myeloma? A qualitative study of views on quality of life. BMC Cancer. 2014;14:496.CrossRefPubMedPubMedCentral
15.
go back to reference Kvam AK, Fayers P, Wisloff F. What changes in health-related quality of life matter to multiple myeloma patients? A prospective study. Eur J Haematol. 2010;84(4):345–53.CrossRefPubMed Kvam AK, Fayers P, Wisloff F. What changes in health-related quality of life matter to multiple myeloma patients? A prospective study. Eur J Haematol. 2010;84(4):345–53.CrossRefPubMed
16.
go back to reference Beatty PC, Willis GB. Research synthesis: the practice of cognitive interviewing. Public Opin Quart. 2007;71(2):287–311.CrossRef Beatty PC, Willis GB. Research synthesis: the practice of cognitive interviewing. Public Opin Quart. 2007;71(2):287–311.CrossRef
17.
go back to reference Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res. 2009;18:1263–78.CrossRefPubMed Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res. 2009;18:1263–78.CrossRefPubMed
18.
go back to reference Willis GB. Cognitive interviewing in practice: think-aloud, verbal probing and other techniques. In: Cognitive interviewing: a tool for improving questionnaire design. London: Sage Publications; 2005. p. 42–63.CrossRef Willis GB. Cognitive interviewing in practice: think-aloud, verbal probing and other techniques. In: Cognitive interviewing: a tool for improving questionnaire design. London: Sage Publications; 2005. p. 42–63.CrossRef
19.
go back to reference Tourangeau R. Cognitive sciences and survey methods. In: Jabine TB, Straf ML, Tanur JM, Tourangeau R, editors. Cognitive aspects of survey methodology: building a bridge between disciplines. Washington, DC: National Academy Press; 1984. p. 73–101. Tourangeau R. Cognitive sciences and survey methods. In: Jabine TB, Straf ML, Tanur JM, Tourangeau R, editors. Cognitive aspects of survey methodology: building a bridge between disciplines. Washington, DC: National Academy Press; 1984. p. 73–101.
20.
go back to reference Collins D. Pretesting survey instruments: an overview of cognitive methods. Qual Life Res. 2003;12:229–38.CrossRefPubMed Collins D. Pretesting survey instruments: an overview of cognitive methods. Qual Life Res. 2003;12:229–38.CrossRefPubMed
21.
go back to reference Willis GB. Analyzing and documenting cognitive interview results. In: Cognitive interviewing: a tool for improving questionnaire design. London: Sage Publications; 2005. p. 151–74.CrossRef Willis GB. Analyzing and documenting cognitive interview results. In: Cognitive interviewing: a tool for improving questionnaire design. London: Sage Publications; 2005. p. 151–74.CrossRef
22.
go back to reference Nunally JO. Psychometric theory. New York: McGraw-Hill; 1978. Nunally JO. Psychometric theory. New York: McGraw-Hill; 1978.
23.
go back to reference Guilford JP. Psychometric methods. New York: McGraw-Hill; 1956. Guilford JP. Psychometric methods. New York: McGraw-Hill; 1956.
24.
go back to reference Tabachnick BG, Fidell LS. Chapter 13: principal components and factor analysis. In: Tabachnick BG, Fidell LS, editors. Using multivariate statistics. London: Pearson; 2012. Tabachnick BG, Fidell LS. Chapter 13: principal components and factor analysis. In: Tabachnick BG, Fidell LS, editors. Using multivariate statistics. London: Pearson; 2012.
25.
go back to reference Bartlett MS. Tests of significance in factor analysis. Br J Psychol. 1950;3(Part II):77–85. Bartlett MS. Tests of significance in factor analysis. Br J Psychol. 1950;3(Part II):77–85.
26.
go back to reference Kaiser HF. A second-generation little jiffy. Psychometrika. 1970;35(4):401–15.CrossRef Kaiser HF. A second-generation little jiffy. Psychometrika. 1970;35(4):401–15.CrossRef
27.
28.
go back to reference Cattell RB. The scree test for the number of factors. Multivar Behav Res. 1966;1(2):245–76.CrossRef Cattell RB. The scree test for the number of factors. Multivar Behav Res. 1966;1(2):245–76.CrossRef
29.
go back to reference O’Connor BP. SPSS and SAS programs for determining the number of components using parallel analysis and Velicer’s MAP test. Behav Res Methods Instrum Comput. 2000;32:396–402.CrossRefPubMed O’Connor BP. SPSS and SAS programs for determining the number of components using parallel analysis and Velicer’s MAP test. Behav Res Methods Instrum Comput. 2000;32:396–402.CrossRefPubMed
30.
go back to reference Velicer WF, Jackson DN. Component analysis versus common factor-analysis - Some further observations. Multivar Behav Res. 1990;25(1):97–114.CrossRef Velicer WF, Jackson DN. Component analysis versus common factor-analysis - Some further observations. Multivar Behav Res. 1990;25(1):97–114.CrossRef
31.
go back to reference Fayers PM, Machin D. Scores and measurements: vaidity, reliability, sensitivity. In: Quality of life: the assessment, analysis and interpretation of patient reported outcomes. 2nd ed. Chichester: Wiley and Sons Ltd; 2007. p. 77–108.CrossRef Fayers PM, Machin D. Scores and measurements: vaidity, reliability, sensitivity. In: Quality of life: the assessment, analysis and interpretation of patient reported outcomes. 2nd ed. Chichester: Wiley and Sons Ltd; 2007. p. 77–108.CrossRef
32.
go back to reference Johnson C, Aaronson N, Blazeby JM, Bottomley A, Fayers P, EORTC Quality of Life Group, et al. Guidelines for developing questionnaire modules (4th Edition). Available online at http://groupseortcbe/qol/sites/default/files/archives/guidelines_for_developing_questionnaire-_final.pdf 2011. Johnson C, Aaronson N, Blazeby JM, Bottomley A, Fayers P, EORTC Quality of Life Group, et al. Guidelines for developing questionnaire modules (4th Edition). Available online at http://​groupseortcbe/​qol/​sites/​default/​files/​archives/​guidelines_​for_​developing_​questionnaire-_​final.​pdf 2011.
33.
go back to reference de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Field testing: item reduction and data structure. In: Measurement in medicine. Cambridge, UK: Cambridge University Press; 2011. p. 65–95.CrossRef de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Field testing: item reduction and data structure. In: Measurement in medicine. Cambridge, UK: Cambridge University Press; 2011. p. 65–95.CrossRef
34.
go back to reference Fayers P, Aaronson NK, Bjordal K, Curran D, and Groenvold M on behalf of the EORTC Quality of Life Study Group. EORTC QLQ-C30 Scoring Manual (Third edition). Brussels: EORTC Quality of Life Group; 2001. Fayers P, Aaronson NK, Bjordal K, Curran D, and Groenvold M on behalf of the EORTC Quality of Life Study Group. EORTC QLQ-C30 Scoring Manual (Third edition). Brussels: EORTC Quality of Life Group; 2001.
35.
go back to reference Dahan J, Auerbach CF. A qualitative study of the trauma and posttraumatic growth of multiple myeloma patients treated with peripheral blood stem cell transplant. Pall Supp Care. 2006;4(4):365–87.CrossRef Dahan J, Auerbach CF. A qualitative study of the trauma and posttraumatic growth of multiple myeloma patients treated with peripheral blood stem cell transplant. Pall Supp Care. 2006;4(4):365–87.CrossRef
36.
go back to reference Maher K, De Vries K. An exploration of the lived experiences of individuals with relapsed Multiple Myeloma. Eur J Cancer Care. 2011;20:267–75.CrossRef Maher K, De Vries K. An exploration of the lived experiences of individuals with relapsed Multiple Myeloma. Eur J Cancer Care. 2011;20:267–75.CrossRef
37.
go back to reference Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Living with multiple myeloma: experiences of patients and their informal caregivers. Supp Care Cancer. 2011;19(1):101–11.CrossRef Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Living with multiple myeloma: experiences of patients and their informal caregivers. Supp Care Cancer. 2011;19(1):101–11.CrossRef
38.
go back to reference Potrata B, Cavet J, Blair S, Howe T, Molassiotis A. Understanding distress and distressing experiences in patients living with multiple myeloma: an exploratory study. Psycho-Oncol. 2011;20(2):127–34.CrossRef Potrata B, Cavet J, Blair S, Howe T, Molassiotis A. Understanding distress and distressing experiences in patients living with multiple myeloma: an exploratory study. Psycho-Oncol. 2011;20(2):127–34.CrossRef
39.
go back to reference Cortina JM. What is coefficient alpha? An examination of theory and applications. J Appl Psychol. 1993;78:98–104.CrossRef Cortina JM. What is coefficient alpha? An examination of theory and applications. J Appl Psychol. 1993;78:98–104.CrossRef
40.
go back to reference Streiner DL. Starting at the beginning: an introduction to coefficient alpha and internal consistency. J Pers Assess. 2003;80(1):99–103.CrossRefPubMed Streiner DL. Starting at the beginning: an introduction to coefficient alpha and internal consistency. J Pers Assess. 2003;80(1):99–103.CrossRefPubMed
42.
go back to reference Osoba D. Translating the science of patient-reported outcomes assessment into clinical practice. J Natl Cancer Inst Monogr. 2007;37:5–11.CrossRefPubMed Osoba D. Translating the science of patient-reported outcomes assessment into clinical practice. J Natl Cancer Inst Monogr. 2007;37:5–11.CrossRefPubMed
43.
go back to reference Fortune-Greeley AK, Flynn KE, Jeffery DD, Williams MS, Keefe FJ, Reeve BB, et al. Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges. Qual Life Res. 2009;18(8):1085–93.CrossRefPubMedPubMedCentral Fortune-Greeley AK, Flynn KE, Jeffery DD, Williams MS, Keefe FJ, Reeve BB, et al. Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges. Qual Life Res. 2009;18(8):1085–93.CrossRefPubMedPubMedCentral
Metadata
Title
Improving the assessment of quality of life in the clinical care of myeloma patients: the development and validation of the Myeloma Patient Outcome Scale (MyPOS)
Authors
Thomas R Osborne
Christina Ramsenthaler
Stephen A Schey
Richard J Siegert
Polly M Edmonds
Irene J Higginson
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Cancer / Issue 1/2015
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-015-1261-6

Other articles of this Issue 1/2015

BMC Cancer 1/2015 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine