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Gepubliceerd in: Quality of Life Research 4/2018

14-12-2017

Conversion of standard retrospective patient-reported outcomes to momentary versions: cognitive interviewing reveals varying degrees of momentary compatibility

Auteurs: Victor Brun Boesen, Stine Birk Nissen, Mogens Groenvold, Jakob Bue Bjorner, Laszlo Hegedüs, Steen Joop Bonnema, Åse Krogh Rasmussen, Ulla Feldt-Rasmussen, Torquil Watt

Gepubliceerd in: Quality of Life Research | Uitgave 4/2018

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Abstract

Purpose

The purpose of this study was to adapt different domains of an existing retrospective questionnaire to momentary versions, to use and assess cognitive interviewing for evaluating the new versions, and to compare momentary compatibility (i.e. an item’s potential to be validly converted to a momentary version) across different scales.

Methods

Initial momentary versions of retrospective patient-reported outcomes were produced by converting present perfect tense wording to present tense wording. Cognitive interviews were conducted iteratively with 21 patients to determine which reference period they actually employed, and to identify problems with new, revised versions. A think-aloud interview protocol was supplemented with non-specific concurrent and specific retrospective probing. The momentary compatibility of each item was evaluated by calculating the proportion of interviews wherein momentary reference periods were identified; problems were categorized according to cognitive aspects of survey methodology taxonomy. The efficiency of various cognitive interviewing techniques was determined by evaluating whether applied reference periods were identified by think-aloud alone or by supplementary probes.

Results

The momentary compatibility varied from 5 to 100% across items. Cognitive interviews revealed potential problems of various severities in the majority of items. Think-aloud alone was sufficient at determining the applied reference period in one-third of the cases, and the efficiency of additional concurrent and retrospective probing was 50 and 94%, respectively.

Conclusions

Cognitive interviewing techniques proved useful for developing and evaluating momentary items. Researchers should be aware of the applied reference period and of emerging problems when evaluating adapted momentary items, since not all concepts are suitable. We recommend the proposed method in future adaptations of existing instruments.
Literatuur
1.
go back to reference Ahmed, S., Berzon, R. A., Revicki, D. A., Lenderking, W. R., Moinpour, C. M., Basch, E., Reeve, B. B., & Wu, A. W., & International Society for Quality of Life, R. (2012). The use of patient-reported outcomes (PRO) within comparative effectiveness research: Implications for clinical practice and health care policy. Medical Care, 50(12), 1060–1070.CrossRefPubMed Ahmed, S., Berzon, R. A., Revicki, D. A., Lenderking, W. R., Moinpour, C. M., Basch, E., Reeve, B. B., & Wu, A. W., & International Society for Quality of Life, R. (2012). The use of patient-reported outcomes (PRO) within comparative effectiveness research: Implications for clinical practice and health care policy. Medical Care, 50(12), 1060–1070.CrossRefPubMed
2.
go back to reference Shiffman, S., Stone, A. A., & Hufford, M. R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed Shiffman, S., Stone, A. A., & Hufford, M. R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed
3.
go back to reference Stone, A. A., Shiffman, S., Atienza, A. A., & Nebeling, L. (2007). The science of real-time data capture: Self-reports in health research. Oxford: Oxford University Press. Stone, A. A., Shiffman, S., Atienza, A. A., & Nebeling, L. (2007). The science of real-time data capture: Self-reports in health research. Oxford: Oxford University Press.
4.
go back to reference Christodoulou, C., Junghaenel, D. U., DeWalt, D. A., Rothrock, N., & Stone, A. A. (2008). Cognitive interviewing in the evaluation of fatigue items: Results from the patient-reported outcomes measurement information system (PROMIS). Quality of Life Research, 17(10), 1239–1246.CrossRefPubMedPubMedCentral Christodoulou, C., Junghaenel, D. U., DeWalt, D. A., Rothrock, N., & Stone, A. A. (2008). Cognitive interviewing in the evaluation of fatigue items: Results from the patient-reported outcomes measurement information system (PROMIS). Quality of Life Research, 17(10), 1239–1246.CrossRefPubMedPubMedCentral
5.
go back to reference Watt, T., Rasmussen, A. K., Groenvold, M., Bjorner, J. B., Watt, S. H., Bonnema, S. J., Hegedus, L., & Feldt-Rasmussen, U. (2008). Improving a newly developed patient-reported outcome for thyroid patients, using cognitive interviewing. Quality of Life Research, 17(7), 1009–1017.CrossRefPubMed Watt, T., Rasmussen, A. K., Groenvold, M., Bjorner, J. B., Watt, S. H., Bonnema, S. J., Hegedus, L., & Feldt-Rasmussen, U. (2008). Improving a newly developed patient-reported outcome for thyroid patients, using cognitive interviewing. Quality of Life Research, 17(7), 1009–1017.CrossRefPubMed
6.
go back to reference Watt, T., Bjorner, J. B., Groenvold, M., Rasmussen, A. K., Bonnema, S. J., Hegedus, L., & Feldt-Rasmussen, U. (2009). Establishing construct validity for the thyroid-specific patient reported outcome measure (ThyPRO): An initial examination. Quality of Life Research, 18(4), 483–496.CrossRefPubMed Watt, T., Bjorner, J. B., Groenvold, M., Rasmussen, A. K., Bonnema, S. J., Hegedus, L., & Feldt-Rasmussen, U. (2009). Establishing construct validity for the thyroid-specific patient reported outcome measure (ThyPRO): An initial examination. Quality of Life Research, 18(4), 483–496.CrossRefPubMed
7.
go back to reference Watt, T., Hegedus, L., Groenvold, M., Bjorner, J. B., Rasmussen, A. K., Bonnema, S. J., & Feldt-Rasmussen, U. (2010). Validity and reliability of the novel thyroid-specific quality of life questionnaire, ThyPRO. European Journal of Endocrinology, 162(1), 161–167.CrossRefPubMed Watt, T., Hegedus, L., Groenvold, M., Bjorner, J. B., Rasmussen, A. K., Bonnema, S. J., & Feldt-Rasmussen, U. (2010). Validity and reliability of the novel thyroid-specific quality of life questionnaire, ThyPRO. European Journal of Endocrinology, 162(1), 161–167.CrossRefPubMed
8.
go back to reference Watt, T., Cramon, P., Hegedus, L., Bjorner, J. B., Bonnema, S. J., Rasmussen, A. K., Feldt-Rasmussen, U., & Groenvold, M. (2014). The thyroid-related quality of life measure ThyPRO has good responsiveness and ability to detect relevant treatment effects. The Journal of Clinical Endocrinology & Metabolism, 99(10), 3708–3717.CrossRef Watt, T., Cramon, P., Hegedus, L., Bjorner, J. B., Bonnema, S. J., Rasmussen, A. K., Feldt-Rasmussen, U., & Groenvold, M. (2014). The thyroid-related quality of life measure ThyPRO has good responsiveness and ability to detect relevant treatment effects. The Journal of Clinical Endocrinology & Metabolism, 99(10), 3708–3717.CrossRef
9.
go back to reference Watt, T., Groenvold, M., Deng, N., Gandek, B., Feldt-Rasmussen, U., Rasmussen, A. K., Hegedus, L., Bonnema, S. J., & Bjorner, J. B. (2014). Confirmatory factor analysis of the thyroid-related quality of life questionnaire ThyPRO. Health and Quality of Life Outcomes, 12, 126.CrossRefPubMedPubMedCentral Watt, T., Groenvold, M., Deng, N., Gandek, B., Feldt-Rasmussen, U., Rasmussen, A. K., Hegedus, L., Bonnema, S. J., & Bjorner, J. B. (2014). Confirmatory factor analysis of the thyroid-related quality of life questionnaire ThyPRO. Health and Quality of Life Outcomes, 12, 126.CrossRefPubMedPubMedCentral
10.
go back to reference Watt, T., Groenvold, M., Hegedus, L., Bonnema, S. J., Rasmussen, A. K., Feldt-Rasmussen, U., & Bjorner, J. B. (2014). Few items in the thyroid-related quality of life instrument ThyPRO exhibited differential item functioning. Quality of Life Research, 23(1), 327–338.CrossRefPubMed Watt, T., Groenvold, M., Hegedus, L., Bonnema, S. J., Rasmussen, A. K., Feldt-Rasmussen, U., & Bjorner, J. B. (2014). Few items in the thyroid-related quality of life instrument ThyPRO exhibited differential item functioning. Quality of Life Research, 23(1), 327–338.CrossRefPubMed
11.
go back to reference Watt, T., Barbesino, G., Bjorner, J. B., Bonnema, S. J., Bukvic, B., Drummond, R., Groenvold, M., Hegedus, L., Kantzer, V., Lasch, K. E., Marcocci, C., Mishra, A., Netea-Maier, R., Ekker, M., Paunovic, I., Quinn, T. J., Rasmussen, A. K., Russell, A., Sabaretnam, M., Smit, J., Torring, O., Zivaljevic, V., & Feldt-Rasmussen, U. (2015). Cross-cultural validity of the thyroid-specific quality-of-life patient-reported outcome measure, ThyPRO. Quality of Life Research, 24(3), 769–780.CrossRefPubMed Watt, T., Barbesino, G., Bjorner, J. B., Bonnema, S. J., Bukvic, B., Drummond, R., Groenvold, M., Hegedus, L., Kantzer, V., Lasch, K. E., Marcocci, C., Mishra, A., Netea-Maier, R., Ekker, M., Paunovic, I., Quinn, T. J., Rasmussen, A. K., Russell, A., Sabaretnam, M., Smit, J., Torring, O., Zivaljevic, V., & Feldt-Rasmussen, U. (2015). Cross-cultural validity of the thyroid-specific quality-of-life patient-reported outcome measure, ThyPRO. Quality of Life Research, 24(3), 769–780.CrossRefPubMed
12.
go back to reference Cramon, P., Winther, K. H., Watt, T., Bonnema, S. J., Bjorner, J. B., Ekholm, O., Groenvold, M., Hegedus, L., Feldt-Rasmussen, U., & Rasmussen, A. K. (2016). Quality-of-life impairments persist six months after treatment of graves’ hyperthyroidism and toxic nodular goiter: A prospective cohort study. Thyroid, 26(8), 1010–1018.CrossRefPubMed Cramon, P., Winther, K. H., Watt, T., Bonnema, S. J., Bjorner, J. B., Ekholm, O., Groenvold, M., Hegedus, L., Feldt-Rasmussen, U., & Rasmussen, A. K. (2016). Quality-of-life impairments persist six months after treatment of graves’ hyperthyroidism and toxic nodular goiter: A prospective cohort study. Thyroid, 26(8), 1010–1018.CrossRefPubMed
13.
go back to reference Willis, G. B. (2005). Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks: Sage Publications.CrossRef Willis, G. B. (2005). Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks: Sage Publications.CrossRef
14.
go back to reference Tourangeau, R., Rips, L. J., & Rasinski, K. A. (2000). The psychology of survey response. Cambridge: Cambridge University Press.CrossRef Tourangeau, R., Rips, L. J., & Rasinski, K. A. (2000). The psychology of survey response. Cambridge: Cambridge University Press.CrossRef
15.
go back to reference Smith, T. J., & Hegedus, L. (2016). Graves’ disease. New England Journal of Medicine, 375(16), 1552–1565.CrossRefPubMed Smith, T. J., & Hegedus, L. (2016). Graves’ disease. New England Journal of Medicine, 375(16), 1552–1565.CrossRefPubMed
16.
go back to reference Mullin, P. A., Lohr, K. N., Bresnahan, B. W., & McNulty, P. (2000). Applying cognitive design principles to formatting HRQOL instruments. Quality of Life Research, 9(1), 13–27.CrossRefPubMed Mullin, P. A., Lohr, K. N., Bresnahan, B. W., & McNulty, P. (2000). Applying cognitive design principles to formatting HRQOL instruments. Quality of Life Research, 9(1), 13–27.CrossRefPubMed
17.
go back to reference Watt, T. (2017). Development, validation, application and abbreviation of an international thyroid-related quality of life patient-reported outcome measure Unpublished Doctoral Dissertation, University of Copenhagen. Watt, T. (2017). Development, validation, application and abbreviation of an international thyroid-related quality of life patient-reported outcome measure Unpublished Doctoral Dissertation, University of Copenhagen.
18.
go back to reference Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273(1), 59–65.CrossRefPubMed Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273(1), 59–65.CrossRefPubMed
19.
go back to reference Burke, L. (2012). An FDA perspective on clinical trial endpoint measurements. ACTTION-II. U. S. F. a. D. Administration (Ed.). Burke, L. (2012). An FDA perspective on clinical trial endpoint measurements. ACTTION-II. U. S. F. a. D. Administration (Ed.).
20.
go back to reference Kastien-Hilka, T., Rosenkranz, B., Bennett, B., Sinanovic, E., & Schwenkglenks, M. (2016). How to evaluate health-related quality of life and its association with medication adherence in pulmonary tuberculosis—designing a prospective observational study in South Africa. Frontiers in Pharmacology, 7, 125.CrossRefPubMedPubMedCentral Kastien-Hilka, T., Rosenkranz, B., Bennett, B., Sinanovic, E., & Schwenkglenks, M. (2016). How to evaluate health-related quality of life and its association with medication adherence in pulmonary tuberculosis—designing a prospective observational study in South Africa. Frontiers in Pharmacology, 7, 125.CrossRefPubMedPubMedCentral
21.
go back to reference Thielsch, C., Andor, T., & Ehring, T. (2015). Do metacognitions and intolerance of uncertainty predict worry in everyday life? An ecological momentary assessment study. Behavior Therapy, 46(4), 532–543.CrossRefPubMed Thielsch, C., Andor, T., & Ehring, T. (2015). Do metacognitions and intolerance of uncertainty predict worry in everyday life? An ecological momentary assessment study. Behavior Therapy, 46(4), 532–543.CrossRefPubMed
22.
go back to reference Thielsch, C., Ehring, T., Nestler, S., Wolters, J., Kopei, I., Rist, F., Gerlach, A. L., & Andor, T. (2015). Metacognitions, worry and sleep in everyday life: Studying bidirectional pathways using ecological momentary assessment in GAD patients. Journal of Anxiety Disorders, 33, 53–61.CrossRefPubMed Thielsch, C., Ehring, T., Nestler, S., Wolters, J., Kopei, I., Rist, F., Gerlach, A. L., & Andor, T. (2015). Metacognitions, worry and sleep in everyday life: Studying bidirectional pathways using ecological momentary assessment in GAD patients. Journal of Anxiety Disorders, 33, 53–61.CrossRefPubMed
23.
go back to reference Stone, A. A., Schwartz, J. E., Neale, J. M., Shiffman, S., Marco, C. A., Hickcox, M., Paty, J., Porter, L. S., & Cruise, L. J. (1998). A comparison of coping assessed by ecological momentary assessment and retrospective recall. Journal of Personality and Social Psychology, 74(6), 1670–1680.CrossRefPubMed Stone, A. A., Schwartz, J. E., Neale, J. M., Shiffman, S., Marco, C. A., Hickcox, M., Paty, J., Porter, L. S., & Cruise, L. J. (1998). A comparison of coping assessed by ecological momentary assessment and retrospective recall. Journal of Personality and Social Psychology, 74(6), 1670–1680.CrossRefPubMed
24.
go back to reference Redelmeier, D. A., & Kahneman, D. (1996). Patients’ memories of painful medical treatments: Real-time and retrospective evaluations of two minimally invasive procedures. Pain, 66(1), 3–8.CrossRefPubMed Redelmeier, D. A., & Kahneman, D. (1996). Patients’ memories of painful medical treatments: Real-time and retrospective evaluations of two minimally invasive procedures. Pain, 66(1), 3–8.CrossRefPubMed
25.
go back to reference Ware, J. E. Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.CrossRefPubMed Ware, J. E. Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.CrossRefPubMed
26.
go back to reference Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., Filiberti, A., Flechtner, H., Fleishman, S. B., de Haes, J. C., 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.CrossRefPubMed Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., Filiberti, A., Flechtner, H., Fleishman, S. B., de Haes, J. C., 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.CrossRefPubMed
27.
go back to reference Conner, T. S., & Barrett, L. F. (2012). Trends in ambulatory self-report: The role of momentary experience in psychosomatic medicine. Psychosomatic Medicine, 74(4), 327–337.CrossRefPubMedPubMedCentral Conner, T. S., & Barrett, L. F. (2012). Trends in ambulatory self-report: The role of momentary experience in psychosomatic medicine. Psychosomatic Medicine, 74(4), 327–337.CrossRefPubMedPubMedCentral
28.
go back to reference Schwarz, N. (2007). Retrospective and concurrent self-reports: The rationale for real-time data capture. In The science of real-time data capture: Self-reports in health research, (pp. 25 (p. 396). Oxford: Oxford University Press. Schwarz, N. (2007). Retrospective and concurrent self-reports: The rationale for real-time data capture. In The science of real-time data capture: Self-reports in health research, (pp. 25 (p. 396). Oxford: Oxford University Press.
Metagegevens
Titel
Conversion of standard retrospective patient-reported outcomes to momentary versions: cognitive interviewing reveals varying degrees of momentary compatibility
Auteurs
Victor Brun Boesen
Stine Birk Nissen
Mogens Groenvold
Jakob Bue Bjorner
Laszlo Hegedüs
Steen Joop Bonnema
Åse Krogh Rasmussen
Ulla Feldt-Rasmussen
Torquil Watt
Publicatiedatum
14-12-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 4/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1762-7

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