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Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark

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Journal of Genetic Counseling

Abstract

Outcome measurement in clinical genetics is challenging. Robust outcome measures are needed to provide evidence to support service development within genetic counseling. The Genetic Counselling Outcome Scale (GCOS-24), a Patient Reported Outcome Measure (PROM), was developed in English and validated with clinical genetics patients in the British NHS. This study reports the translation and adaptation of the GCOS-24 for use in Denmark. GCOS-24 was translated and back translated, supervised by an expert committee. Feedback on the first version was collected from genetic counseling patients in qualitative interviews focusing on instructions for use, response options and specific items considered semantically difficult. After further adjustment the adapted and translated version was administered to a second sample of patients, with responses analyzed using descriptive statistics. Eighteen interviews were conducted, and led to adjustment of item wording. Sixty-one patients completed the final version GCOS-24dk. Internal consistency is good (Cronbach’s α =0.79), with an acceptable number of missing responses and no floor or ceiling effect observed. GCOS-24 has been successfully translated and adapted for use in a Danish setting. The study confirms the feasibility of local adaptation of patient reported outcome measures and stresses the importance of adaptation, even across quite similar populations and health care systems.

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References

  • Austin, J. C. (2010). Re-conceptualizing risk in genetic counseling: implications for clinical practice. Journal of Genetic Counseling, 19(3), 228–234.

    Article  PubMed  PubMed Central  Google Scholar 

  • Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976.), 25, 3186–3191.

    Article  CAS  Google Scholar 

  • Boyce, M. B., Browne, J. P., & Greenhalgh, J. (2014). The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research. BMJ Qual.Saf, 23, 508–518.

    Article  PubMed  Google Scholar 

  • Brady, M. J., Cella, D. F., Mo, F., Bonomi, A. E., Tulsky, D. S., et al. (1997). Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J.Clin.Oncol., 15, 974–986.

    Article  CAS  PubMed  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77.

    Article  Google Scholar 

  • Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., et al. (1993). The functional assessment of cancer therapy scale: development and validation of the general measure. J.Clin.Oncol., 11, 570–579.

    Article  CAS  PubMed  Google Scholar 

  • Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., et al. (2007). The patient-reported outcomes measurement information system (PROMIS): progress of an NIH roadmap cooperative group during its first two years. Med.Care, 45, S3–S11.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., et al. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J.Clin.Epidemiol., 63, 1179–1194.

    Article  PubMed  PubMed Central  Google Scholar 

  • Copay, A. G., Subach, B. R., Glassman, S. D., Polly Jr., D. W., & Schuler, T. C. (2007). Understanding the minimum clinically important difference: a review of concepts and methods. The Spine Journal, 7, 541–546.

    Article  PubMed  Google Scholar 

  • Dawson, J., Doll, H., Fitzpatrick, R., Jenkinson, C., & Carr, A. J. (2010). The routine use of patient reported outcome measures in healthcare settings. BMJ, 340, c186.

    Article  PubMed  Google Scholar 

  • Derogatis, L. R. (1983). SCL-90R manual II. Clinical Psychometric Research.

  • Derogatis, L. R., Lipman, R. S., Rickels, K., Uhlenhuth, E. H., & Covi, L. (1974). The Hopkins symptom checklist (HSCL): a self-report symptom inventory. Behav.Sci., 19, 1–15.

    Article  CAS  PubMed  Google Scholar 

  • Drennan, J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42, 57–63.

    Article  PubMed  Google Scholar 

  • Forrest, C. B., Bevans, K. B., Tucker, C., Riley, A. W., Ravens-Sieberer, U., et al. (2012). Commentary: The patient-reported outcome measurement information system (PROMIS(R)) for children and youth: application to pediatric psychology. Journal of Pediatric Psychology, 37, 614–621.

    Article  PubMed  PubMed Central  Google Scholar 

  • Gergen, K. (2009). An invitation to social construction.

  • Goldberg, D. P., & Hillier, V. F. (1979). A scaled version of the general health questionnaire. Psychological Medicine, 9, 139–145.

    Article  CAS  PubMed  Google Scholar 

  • Goldberg, D., & Williams, P. (1988). A user’s guide to the General Health Questionnaire. Windsor, Berks: NFER-Nelson Publishing.

  • Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20, 1727–1736.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Heritage, J. (2010). Garfinkel and ethnomethodology. Cambridge: Blackwell Publishers.

    Google Scholar 

  • Horowitz, M., Wilner, N., & Alvarez, W. (1979). Impact of event scale: a measure of subjective stress. Psychosomatic Medicine, 41, 209–218.

    Article  CAS  PubMed  Google Scholar 

  • Irwin, D. E., Varni, J. W., Yeatts, K., & DeWalt, D. A. (2009). Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health and Quality of Life Outcomes, 7, 3.

    Article  PubMed  PubMed Central  Google Scholar 

  • Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status. Ascertaining the minimal clinically important difference. Control Clin. Trials, 10, 407–415.

    Article  CAS  PubMed  Google Scholar 

  • James, W. (1950). Principles of psychology. New York: Dover Publications.

    Google Scholar 

  • Judge, A., Arden, N. K., Kiran, A., Price, A., Javaid, M. K., et al. (2012). Interpretation of patient-reported outcomes for hip and knee replacement surgery: identification of thresholds associated with satisfaction with surgery. J.Bone Joint Surg.Br., 94, 412–418.

    Article  CAS  PubMed  Google Scholar 

  • Kasparian, N. A., Wakefield, C. E., & Meiser, B. (2007). Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. J.Genet.Couns., 16, 693–712.

    Article  PubMed  Google Scholar 

  • King, M. T. (2011). A point of minimal important difference (MID): a critique of terminology and methods. Expert.Rev.Pharmacoecon.Outcomes.Res., 11, 171–184.

    Article  PubMed  Google Scholar 

  • Kvale, S., & Brinkmann S. (2010). Interview-introduktion til et håndværk.

  • Marteau, T. M., & Bekker, H. (1992). The development of a six-item short-form of the state scale of the Spielberger state-trait anxiety inventory (STAI). Br.J.Clin.Psychol., 31(Pt 3), 301–306.

    Article  PubMed  Google Scholar 

  • McAllister, M. (2016). Genomics and patient empowerment. In D. Kumar & R. Chadwick (Eds.), Genomics and society. Philadelphia: Elsevier Inc..

    Google Scholar 

  • McAllister, M., & Dearing, A. (2014). Patient reported outcomes and patient empowerment in clinical genetics services. Clin.Genet, 88, 114–121.

    Article  PubMed  Google Scholar 

  • McAllister, M., Dunn, G., & Todd, C. (2011a). Empowerment: qualitative underpinning of a new clinical genetics-specific patient-reported outcome. Eur.J.Hum.Genet., 19, 125–130.

    Article  PubMed  Google Scholar 

  • McAllister, M., Wood, A. M., Dunn, G., Shiloh, S., & Todd, C. (2011b). The genetic counseling outcome scale: a new patient-reported outcome measure for clinical genetics services. Clin.Genet., 79, 413–424.

    Article  CAS  PubMed  Google Scholar 

  • McAllister, M., Dunn, G., Payne, K., Davies, L., & Todd, C. (2012a). Patient empowerment: the need to consider it as a measurable patient-reported outcome for chronic conditions. BMC.Health Serv.Res, 12, 157.

    Article  PubMed  PubMed Central  Google Scholar 

  • McAllister, M., Wood, A. M., Dunn, G., Shiloh, S., & Todd, C. (2012b). The perceived personal control (PPC) questionnaire: reliability and validity in a sample from the United Kingdom. American Journal of Medical Genetics. Part A, 158A, 367–372.

    Article  PubMed  Google Scholar 

  • Neuburger, J., Hutchings, A., van der, M. J., & Black, N. (2013). Using patient-reported outcomes (PROs) to compare the providers of surgery: does the choice of measure matter? Med.Care, 51, 517–523.

    Article  PubMed  Google Scholar 

  • Nuttall, D., Parkin, D., & Devlin, N. (2013). Inter-provider comparison of patient-reported outcomes: Developing an adjustment to account for differences in patient case mix. Health Economics, 24, 41–54.

    Article  PubMed  Google Scholar 

  • Payne, K., Nicholls, S., McAllister, M., Macleod, R., Donnai, D., et al. (2008). Outcome measurement in clinical genetics services: a systematic review of validated measures. Value in Health, 11, 497–508.

    Article  PubMed  Google Scholar 

  • Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: plans for the patient-reported outcomes measurement information system (PROMIS). Med.Care, 45, S22–S31.

    Article  PubMed  Google Scholar 

  • Spielberger, C. D., Gorsuch, R. L., & Lushene, R. E. (1970). Manual for the STAI. Consulting Psychologists Tests, 1970.

  • Stratford, P. W., Binkley, J. M., Riddle, D. L., & Guyatt, G. H. (1998). Sensitivity to change of the Roland-Morris back pain questionnaire: part 1. Phys.Ther., 78, 1186–1196.

    Article  CAS  PubMed  Google Scholar 

  • Taylor, M. J., McNicholas, C., Nicolay, C., Darzi, A., Bell, D., et al. (2014). Systematic review of the application of the plan-do-study-act method to improve quality in healthcare. BMJ Qual.Saf, 23, 290–298.

    Article  PubMed  Google Scholar 

  • Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. J.Clin.Epidemiol., 60, 34–42.

    Article  PubMed  Google Scholar 

  • Terwee, C. B., Mokkink, L. B., Knol, D. L., Ostelo, R. W., Bouter, L. M., et al. (2012). Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual.Life Res., 21, 651–657.

    Article  PubMed  Google Scholar 

  • Wild, D., Grove, A., Martin, M., Eremenco, S., McElroy, S., et al. (2005). Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value in Health, 8, 94–104.

    Article  PubMed  Google Scholar 

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Acknowledgements

We are most grateful the patients who participated in the study. We would also like to thank Gunhild Diness, Andy Jefferson, and Tharangini Kern who conducted the translations.

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Authors and Affiliations

  1. Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark

    Birgitte Rode Diness, Tina Duelund Hjortshøj, Trine Bjørg Hammer, Susanne Timshel & Else Sørensen

  2. Department of Clinical Genetics , RH4062, Rigshospitalet, Copenhagen University Hospital, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark

    Birgitte Rode Diness

  3. The Research Unit for General Practice and Section of General Practice, Copenhagen University, Copenhagen, Denmark

    Gritt Overbeck

  4. Institute of Cancer & Genetics, Cardiff University School of Medicine, Cardiff, UK

    Marion McAllister

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  1. Birgitte Rode Diness
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  2. Gritt Overbeck
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  3. Tina Duelund Hjortshøj
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Correspondence to Birgitte Rode Diness.

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Conflicts of Interest

Birgitte Rode Diness, Gritt Overbeck, Tina Duelund Hjortshøj, Trine Bjørg Hammer, Susanne Timshel, Else Sørensen and Marion McAllister declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

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No animal studies were carried out by the authors for this article.

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Diness, B.R., Overbeck, G., Hjortshøj, T.D. et al. Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark. J Genet Counsel 26, 1080–1089 (2017). https://doi.org/10.1007/s10897-017-0086-7

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  • DOI: https://doi.org/10.1007/s10897-017-0086-7

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