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Gepubliceerd in: Quality of Life Research 1/2009

01-02-2009

Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples

Auteurs: Matthias Rose, Andrea Bezjak

Gepubliceerd in: Quality of Life Research | Uitgave 1/2009

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Abstract

Purpose

Interest in collecting patient-reported outcomes (PROs), such as health-related quality of life (HRQOL), health status reports, and patient satisfaction is on the rise and practical aspects of collecting PROs in clinical practice are becoming more important. The purpose of this paper is to draw the attention to a number of issues relevant for a successful integration of PRO measures into the daily work flow of busy clinical settings.

Methods

The paper summarizes the results from a breakout session held at an ISOQOL special topic conference for PRO measures in clinical practice in 2007.

Results

Different methodologies of collecting PROs are discussed, and the support needed for each methodology is highlighted. The discussion is illustrated by practical real-life examples from early adaptors who administered paper–pencil, or electronic PRO assessments (ePRO) for more than a decade. The paper also reports about new experiences with more recent technological developments, such as SmartPens and Computer Adaptive Tests (CATs) in daily practice.

Conclusions

Methodological and logistical issues determine the resources needed for a successful integration of PRO measures into daily work flow procedures and influence significantly the usefulness of PRO data for clinical practice.
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Literatuur
3.
go back to reference Ouimette, P., Wade, M., Prins, A., & Schohn, M. (2008). Identifying PTSD in primary care: Comparison of the primary care-PTSD screen (PC-PTSD) and the general health questionnaire-12 (GHQ). Journal of Anxiety Disorders, 22, 337–343. PubMedCrossRef Ouimette, P., Wade, M., Prins, A., & Schohn, M. (2008). Identifying PTSD in primary care: Comparison of the primary care-PTSD screen (PC-PTSD) and the general health questionnaire-12 (GHQ). Journal of Anxiety Disorders, 22, 337–343. PubMedCrossRef
7.
go back to reference Bren, L. (2006). The importance of patient-reported outcomes…it’s all about the patients. FDA Consumer, 40, 26–32. PubMed Bren, L. (2006). The importance of patient-reported outcomes…it’s all about the patients. FDA Consumer, 40, 26–32. PubMed
8.
go back to reference van Andel, G., Bottomley, A., Fossa, S. D., Efficace, F., Coens, C., Guerif, S., et al. (2008). An international field study of the EORTC QLQ-PR25: A questionnaire for assessing the health-related quality of life of patients with prostate cancer. European Journal of Cancer, 44, 2418–2424. doi: 10.​1016/​j.​ejca.​2008.​07.​030. PubMedCrossRef van Andel, G., Bottomley, A., Fossa, S. D., Efficace, F., Coens, C., Guerif, S., et al. (2008). An international field study of the EORTC QLQ-PR25: A questionnaire for assessing the health-related quality of life of patients with prostate cancer. European Journal of Cancer, 44, 2418–2424. doi: 10.​1016/​j.​ejca.​2008.​07.​030. PubMedCrossRef
9.
go back to reference Chisholm, M. A., Williamson, G. M., Lance, C. E., & Mulloy, L. L. (2007). Predicting adherence to immunosuppressant therapy: A prospective analysis of the theory of planned behaviour. Nephrology, Dialysis, Transplantation, 22, 2339–2348. doi: 10.​1093/​ndt/​gfm149. PubMedCrossRef Chisholm, M. A., Williamson, G. M., Lance, C. E., & Mulloy, L. L. (2007). Predicting adherence to immunosuppressant therapy: A prospective analysis of the theory of planned behaviour. Nephrology, Dialysis, Transplantation, 22, 2339–2348. doi: 10.​1093/​ndt/​gfm149. PubMedCrossRef
11.
go back to reference Efficace, F., Innominato, P. F., Bjarnason, G., Coens, C., Humblet, Y., Tumolo, S., et al. (2008). Validation of patient’s self-reported social functioning as an independent prognostic factor for survival in metastatic colorectal cancer patients: Results of an international study by the Chronotherapy Group of the European Organisation for Research and Treatment of Cancer. Journal of Clinical Oncology, 26, 2020–2026. doi: 10.​1200/​JCO.​2007.​12.​3117. PubMedCrossRef Efficace, F., Innominato, P. F., Bjarnason, G., Coens, C., Humblet, Y., Tumolo, S., et al. (2008). Validation of patient’s self-reported social functioning as an independent prognostic factor for survival in metastatic colorectal cancer patients: Results of an international study by the Chronotherapy Group of the European Organisation for Research and Treatment of Cancer. Journal of Clinical Oncology, 26, 2020–2026. doi: 10.​1200/​JCO.​2007.​12.​3117. PubMedCrossRef
13.
go back to reference Rumsfeld, J. S., MaWhinney, S., McCarthy, M., Jr., Shroyer, A. L., VillaNueva, C. B., O’Brien, M., et al. (1999). Health-related quality of life as a predictor of mortality following coronary artery bypass graft surgery. Participants of the Department of veterans affairs cooperative study group on processes, structures, and outcomes of care in cardiac surgery. Journal of the American Medical Association, 281, 1298–1303. doi: 10.​1001/​jama.​281.​14.​1298. PubMedCrossRef Rumsfeld, J. S., MaWhinney, S., McCarthy, M., Jr., Shroyer, A. L., VillaNueva, C. B., O’Brien, M., et al. (1999). Health-related quality of life as a predictor of mortality following coronary artery bypass graft surgery. Participants of the Department of veterans affairs cooperative study group on processes, structures, and outcomes of care in cardiac surgery. Journal of the American Medical Association, 281, 1298–1303. doi: 10.​1001/​jama.​281.​14.​1298. PubMedCrossRef
15.
go back to reference Bettinville, A., Rabenberg, H., & Hansgen, K. D. (2005). An enquiry into the WILDE-Intelligence-Test (WIT): Comparability of application of the paper-pencil-version vs. the computer based application—an analysis based on data of the Leipzig Vocational Retraining Center. Die Rehabilitation, 44, 237–243. doi: 10.​1055/​s-2005-866926. PubMedCrossRef Bettinville, A., Rabenberg, H., & Hansgen, K. D. (2005). An enquiry into the WILDE-Intelligence-Test (WIT): Comparability of application of the paper-pencil-version vs. the computer based application—an analysis based on data of the Leipzig Vocational Retraining Center. Die Rehabilitation, 44, 237–243. doi: 10.​1055/​s-2005-866926. PubMedCrossRef
16.
go back to reference Folk, L. C., March, J. Z., & Hurst, R. D. (2006). A comparison of linear, fixed-form computer-based testing versus traditional paper-and-pencil-format testing in veterinary medical education. Journal of Veterinary Medical Education, 33, 455–464. doi: 10.​3138/​jvme.​33.​3.​455. PubMedCrossRef Folk, L. C., March, J. Z., & Hurst, R. D. (2006). A comparison of linear, fixed-form computer-based testing versus traditional paper-and-pencil-format testing in veterinary medical education. Journal of Veterinary Medical Education, 33, 455–464. doi: 10.​3138/​jvme.​33.​3.​455. PubMedCrossRef
17.
go back to reference Norman, G. J., Sallis, J. F., & Gaskins, R. (2005). Comparability and reliability of paper- and computer-based measures of psychosocial constructs for adolescent physical activity and sedentary behaviors. Research Quarterly for Exercise and Sport, 76, 315–323. PubMed Norman, G. J., Sallis, J. F., & Gaskins, R. (2005). Comparability and reliability of paper- and computer-based measures of psychosocial constructs for adolescent physical activity and sedentary behaviors. Research Quarterly for Exercise and Sport, 76, 315–323. PubMed
18.
go back to reference Webb, P. M., Zimet, G. D., Fortenberry, J. D., & Blythe, M. J. (1999). Comparability of a computer-assisted versus written method for collecting health behavior information from adolescent patients. The Journal of Adolescent Health, 24, 383–388. doi: 10.​1016/​S1054-139X(99)00005-1. PubMedCrossRef Webb, P. M., Zimet, G. D., Fortenberry, J. D., & Blythe, M. J. (1999). Comparability of a computer-assisted versus written method for collecting health behavior information from adolescent patients. The Journal of Adolescent Health, 24, 383–388. doi: 10.​1016/​S1054-139X(99)00005-1. PubMedCrossRef
19.
go back to reference Heuser, J., & Geissner, E. (1998). Computerized version of the pain experience scale: A study of equivalence. Schmerz (Berlin, Germany), 12, 205–208. doi: 10.​1007/​s004820050143. Heuser, J., & Geissner, E. (1998). Computerized version of the pain experience scale: A study of equivalence. Schmerz (Berlin, Germany), 12, 205–208. doi: 10.​1007/​s004820050143.
20.
go back to reference Velikova, G., Wright, E. P., Smith, A. B., Cull, A., Gould, A., Forman, D., et al. (1999). Automated collection of quality-of-life data: A comparison of paper and computer touch-screen questionnaires. Journal of Clinical Oncology, 17, 998–1007. PubMed Velikova, G., Wright, E. P., Smith, A. B., Cull, A., Gould, A., Forman, D., et al. (1999). Automated collection of quality-of-life data: A comparison of paper and computer touch-screen questionnaires. Journal of Clinical Oncology, 17, 998–1007. PubMed
21.
22.
go back to reference Schaeren, S., Bischoff-Ferrari, H. A., Knupp, M., Dick, W., Huber, J. F., & Theiler, R. (2005). A computer touch-screen version of the North American Spine Society outcome assessment instrument for the lumbar spine. The Journal of Bone and Joint Surgery. British Volume, 87, 201–204. doi: 10.​1302/​0301-620X.​87B2.​15548. PubMedCrossRef Schaeren, S., Bischoff-Ferrari, H. A., Knupp, M., Dick, W., Huber, J. F., & Theiler, R. (2005). A computer touch-screen version of the North American Spine Society outcome assessment instrument for the lumbar spine. The Journal of Bone and Joint Surgery. British Volume, 87, 201–204. doi: 10.​1302/​0301-620X.​87B2.​15548. PubMedCrossRef
24.
go back to reference Burke, J. D., Burke, K. C., Baker, J. H., & Hillis, A. (1995). Test-retest reliability in psychiatric patients of the SF-36 Health Survey. International Journal of Methods in Psychiatric Research, 5, 189–194. Burke, J. D., Burke, K. C., Baker, J. H., & Hillis, A. (1995). Test-retest reliability in psychiatric patients of the SF-36 Health Survey. International Journal of Methods in Psychiatric Research, 5, 189–194.
25.
go back to reference Kleinman, L., Leidy, N. K., Crawley, J., Bonomi, A., & Schoenfeld, P. (2001). A comparative trial of paper-and-pencil versus computer administration of the Quality of Life in Reflux and Dyspepsia (QOLRAD) Questionnaire. Medical Care, 39, 181–189. doi: 10.​1097/​00005650-200102000-00008. PubMedCrossRef Kleinman, L., Leidy, N. K., Crawley, J., Bonomi, A., & Schoenfeld, P. (2001). A comparative trial of paper-and-pencil versus computer administration of the Quality of Life in Reflux and Dyspepsia (QOLRAD) Questionnaire. Medical Care, 39, 181–189. doi: 10.​1097/​00005650-200102000-00008. PubMedCrossRef
26.
27.
go back to reference Saleh, K. J., Radosevich, D. M., Kassim, R. A., Moussa, M., Dykes, D., Bottolfson, H., et al. (2002). Comparison of commonly used orthopaedic outcome measures using palm-top computers and paper surveys. Journal of Orthopaedic Research, 20, 1146–1151. doi: 10.​1016/​S0736-0266(02)00059-1. PubMedCrossRef Saleh, K. J., Radosevich, D. M., Kassim, R. A., Moussa, M., Dykes, D., Bottolfson, H., et al. (2002). Comparison of commonly used orthopaedic outcome measures using palm-top computers and paper surveys. Journal of Orthopaedic Research, 20, 1146–1151. doi: 10.​1016/​S0736-0266(02)00059-1. PubMedCrossRef
28.
go back to reference Wilson, A. S., Kitas, G. D., Carruthers, D. M., Reay, C., Skan, J., Harris, S., et al. (2002). Computerized information-gathering in specialist rheumatology clinics: An initial evaluation of an electronic version of the Short Form 36. Rheumatology (Oxford England), 41, 268–273. doi: 10.​1093/​rheumatology/​41.​3.​268. CrossRef Wilson, A. S., Kitas, G. D., Carruthers, D. M., Reay, C., Skan, J., Harris, S., et al. (2002). Computerized information-gathering in specialist rheumatology clinics: An initial evaluation of an electronic version of the Short Form 36. Rheumatology (Oxford England), 41, 268–273. doi: 10.​1093/​rheumatology/​41.​3.​268. CrossRef
29.
go back to reference Beebe, T. J., Harrison, P. A., McRae, J. A., & Evans, J. A. (2006). The effects of data collection mode and disclosure on adolescent reporting of health behavior. Social Science Computer Review, 24, 476–488. doi: 10.​1177/​0894439306288690​. CrossRef Beebe, T. J., Harrison, P. A., McRae, J. A., & Evans, J. A. (2006). The effects of data collection mode and disclosure on adolescent reporting of health behavior. Social Science Computer Review, 24, 476–488. doi: 10.​1177/​0894439306288690​. CrossRef
30.
go back to reference DeAngelis, S. (2000). Equivalency of computer-based and paper-and-pencil testing. Journal of Allied Health, 29, 161–164. PubMed DeAngelis, S. (2000). Equivalency of computer-based and paper-and-pencil testing. Journal of Allied Health, 29, 161–164. PubMed
32.
go back to reference Hepner, K. A., Brown, J. A., & Hays, R. D. (2005). Comparison of mail and telephone in assessing patient experiences in receiving care from medical group practices. Evaluation & the Health Professions, 28, 377–389. doi: 10.​1177/​0163278705281074​. CrossRef Hepner, K. A., Brown, J. A., & Hays, R. D. (2005). Comparison of mail and telephone in assessing patient experiences in receiving care from medical group practices. Evaluation & the Health Professions, 28, 377–389. doi: 10.​1177/​0163278705281074​. CrossRef
38.
40.
go back to reference Meara, A. (2008). Director of medical management at the CMO of the Montefiori Medical Center. Ref Type: Personal Communication. Meara, A. (2008). Director of medical management at the CMO of the Montefiori Medical Center. Ref Type: Personal Communication.
41.
45.
go back to reference Williams, C. A., Templin, T., & Mosley-Williams, A. D. (2004). Usability of a computer-assisted interview system for the unaided self-entry of patient data in an urban rheumatology clinic. Journal of the American Medical Informatics Association, 11, 249–259. doi: 10.​1197/​jamia.​M1527. PubMedCrossRef Williams, C. A., Templin, T., & Mosley-Williams, A. D. (2004). Usability of a computer-assisted interview system for the unaided self-entry of patient data in an urban rheumatology clinic. Journal of the American Medical Informatics Association, 11, 249–259. doi: 10.​1197/​jamia.​M1527. PubMedCrossRef
47.
go back to reference Bezjak, A., Ng, P., Skeel, R., DePetrillo, A. D., Comis, R., & Taylor, K. M. (2001). Oncologists’ use of quality of life information: Results of a survey of eastern cooperative oncology group physicians. Quality of Life Research, 10, 1–13. doi: 10.​1023/​A:​1016692804023. PubMedCrossRef Bezjak, A., Ng, P., Skeel, R., DePetrillo, A. D., Comis, R., & Taylor, K. M. (2001). Oncologists’ use of quality of life information: Results of a survey of eastern cooperative oncology group physicians. Quality of Life Research, 10, 1–13. doi: 10.​1023/​A:​1016692804023. PubMedCrossRef
48.
go back to reference Till, J. E. (1994). Measuring quality of life: Apparent benefits, potential concerns. The Canadian Journal of Oncology, 4, 243–248. PubMed Till, J. E. (1994). Measuring quality of life: Apparent benefits, potential concerns. The Canadian Journal of Oncology, 4, 243–248. PubMed
49.
go back to reference Taylor, K. M., Macdonald, K. G., Bezjak, A., Ng, P., & DePetrillo, A. D. (1996). Physicians’ perspective on quality of life: An exploratory study of oncologists. Quality of Life Research, 5, 5–14. doi: 10.​1007/​BF00435963. PubMedCrossRef Taylor, K. M., Macdonald, K. G., Bezjak, A., Ng, P., & DePetrillo, A. D. (1996). Physicians’ perspective on quality of life: An exploratory study of oncologists. Quality of Life Research, 5, 5–14. doi: 10.​1007/​BF00435963. PubMedCrossRef
50.
52.
go back to reference Regier, D. A., Narrow, W. E., Rae, D. S., Manderscheid, R. W., Locke, B. Z., & Goodwin, F. K. (1993). The de facto US mental and addictive disorders service system. Epidemiologic catchment area prospective 1-year prevalence rates of disorders and services. Archives of General Psychiatry, 50, 85–94. PubMed Regier, D. A., Narrow, W. E., Rae, D. S., Manderscheid, R. W., Locke, B. Z., & Goodwin, F. K. (1993). The de facto US mental and addictive disorders service system. Epidemiologic catchment area prospective 1-year prevalence rates of disorders and services. Archives of General Psychiatry, 50, 85–94. PubMed
53.
go back to reference Rose, M., Hess, V., Horhold, M., Brahler, E., & Klapp, B. F. (1999). Mobile computer-assisted psychometric diagnosis. Economic advantages and results on test stability. Psychotherapie, Psychosomatik, Medizinische Psychologie, 49, 202–207. PubMed Rose, M., Hess, V., Horhold, M., Brahler, E., & Klapp, B. F. (1999). Mobile computer-assisted psychometric diagnosis. Economic advantages and results on test stability. Psychotherapie, Psychosomatik, Medizinische Psychologie, 49, 202–207. PubMed
57.
go back to reference Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA: The Journal of the American Medical Association, 288(23), 3027–3034. doi: 10.​1001/​jama.​288.​23.​3027. CrossRef Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA: The Journal of the American Medical Association, 288(23), 3027–3034. doi: 10.​1001/​jama.​288.​23.​3027. CrossRef
58.
go back to reference Rubenstein, L. V., McCoy, J. M., Cope, D. W., Barrett, P. A., Hirsch, S. H., Messer, K. S., et al. (1995). Improving patient quality of life with feedback to physicians about functional status. Journal of General Internal Medicine, 10, 607–614. doi: 10.​1007/​BF02602744. PubMedCrossRef Rubenstein, L. V., McCoy, J. M., Cope, D. W., Barrett, P. A., Hirsch, S. H., Messer, K. S., et al. (1995). Improving patient quality of life with feedback to physicians about functional status. Journal of General Internal Medicine, 10, 607–614. doi: 10.​1007/​BF02602744. PubMedCrossRef
59.
go back to reference Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22, 714–724. doi: 10.​1200/​JCO.​2004.​06.​078. PubMedCrossRef Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22, 714–724. doi: 10.​1200/​JCO.​2004.​06.​078. PubMedCrossRef
60.
go back to reference Ware, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36® Health Survey Manual and Interpretation Guide. Boston, MA: New England Medical Center, The Health Institute. Ware, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36® Health Survey Manual and Interpretation Guide. Boston, MA: New England Medical Center, The Health Institute.
61.
go back to reference Kroenke, K., Spitzer, R. L., & Williams, J. B. (2002). The PHQ-15: Validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic Medicine, 64, 258–266. PubMed Kroenke, K., Spitzer, R. L., & Williams, J. B. (2002). The PHQ-15: Validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic Medicine, 64, 258–266. PubMed
62.
go back to reference Kroenke, K., Strine, T. W., Spitzer, R. L., Williams, J. B., Berry, J. T., & Mokdad, A. H. (2008). The PHQ-8 as a measure of current depression in the general population. Journal of Affective Disorders (in press). Kroenke, K., Strine, T. W., Spitzer, R. L., Williams, J. B., Berry, J. T., & Mokdad, A. H. (2008). The PHQ-8 as a measure of current depression in the general population. Journal of Affective Disorders (in press).
64.
65.
go back to reference Embretson, S., & Reise, S. P. (2000). Item response theory for psychologists. Mahwah, NJ: Laurence Erlbaum Associates Inc. Embretson, S., & Reise, S. P. (2000). Item response theory for psychologists. Mahwah, NJ: Laurence Erlbaum Associates Inc.
66.
go back to reference Hambleton, R. K., Swaminathan, H., & Rogers, H. J. (1991). Fundamentals of item response theory. London: Sage Publications. Hambleton, R. K., Swaminathan, H., & Rogers, H. J. (1991). Fundamentals of item response theory. London: Sage Publications.
68.
go back to reference Wainer, H., Dorans, N., & Flaugher, R. (2000). Computerized adaptive testing: A primer. Hillsdale, NJ: Lawrence Erlbaum Associates. Wainer, H., Dorans, N., & Flaugher, R. (2000). Computerized adaptive testing: A primer. Hillsdale, NJ: Lawrence Erlbaum Associates.
69.
go back to reference Wainer, H., & Mislevy, R. J. (2000). Item response theory, item calibration, and proficiency estimation. In H. Wainer, N. J. Dorans, R. Flaugher, B. F. Green, R. J. Mislevy, L. Steinberg, & D. Thissen (Eds.), Computerized adaptive testing: A primer (2nd ed., pp. 61–101). Hillsdale, NJ: Lawrence Erlbaum Associates. Wainer, H., & Mislevy, R. J. (2000). Item response theory, item calibration, and proficiency estimation. In H. Wainer, N. J. Dorans, R. Flaugher, B. F. Green, R. J. Mislevy, L. Steinberg, & D. Thissen (Eds.), Computerized adaptive testing: A primer (2nd ed., pp. 61–101). Hillsdale, NJ: Lawrence Erlbaum Associates.
73.
Metagegevens
Titel
Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples
Auteurs
Matthias Rose
Andrea Bezjak
Publicatiedatum
01-02-2009
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 1/2009
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-008-9436-0

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