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Twelve years–experience with the Patient Generated Index (PGI) of quality of life: a graded structured review

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Abstract

The Patient Generated Index (PGI) is an individualised quality of life (QoL) measure that has been in use since 1994. Various adaptations have been made to suit a variety of client groups. The PGI’s psychometric properties have been studied but their review is necessary to inform instrument choice. This article provides a structured review, using grading criteria adapted from those developed to aid outcome measure selection for use with older people. These criteria grade quality of evidence and strength of findings for psychometric validity, providing a useful model for future reviews. All published articles providing data addressing validity, reliability and/or responsiveness were included in the review. Eighteen relevant articles were identified and analysed using the grading criteria. Variable results and quality of investigation were seen. Generally the measure was found to be adequately reliable for group comparisons. The PGI appeared valid but evidence for responsiveness was unclear. Those versions of the measure using fewer points in their Likert scales may have higher reliability. Cognitions involved in QoL judgements remain little understood and investigations of psychometric properties may be enhanced by examination of appraisal processes.

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References

  1. Ahmed, S. M., Mayo, N. E., Wood-Dauphinee, S., Hanley, J. A., & Cohen, S. R. (2005). Using the patient generated index to evaluate response shift post-stroke. Quality of Life Research, 14, 2247–257.

    Article  PubMed  Google Scholar 

  2. Allison, P. J., Locker, D., & Feine, J. S. (1997). Quality of life: A dynamic construct. Social Science and Medicine, 45, 221–30.

    Article  CAS  PubMed  Google Scholar 

  3. Atkins, D., Best, D., Briss, P. A., Eccles, M., Falck-Ytter, Y., Flottorp, S., et al. (2004). Grading quality of evidence and strength of recommendations. British Medical Journal, 328, 1490.

    Article  PubMed  Google Scholar 

  4. Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. The Lancet, 327, 307–10.

    Article  Google Scholar 

  5. Callaghan, B. G., & Condie, M. E. (2003). A post-discharge quality of life outcome measure for lower limb amputees: Test-retest reliability and construct validity. Clinical Rehabilitation, 17, 858–64.

    Article  CAS  PubMed  Google Scholar 

  6. Camilleri-Brennan, J., Ruta, D., & Steele, R. J. C. (2002). Patient generated index: New instrument for measuring quality of life in patients with rectal cancer. World Journal of Surgery, 26, 1354–359.

    Article  PubMed  Google Scholar 

  7. Cummins, R. (2000). Personal income and subjective well-being: A review. Journal of Happiness Studies, 1, 133–58.

    Article  Google Scholar 

  8. Dempster, M., & Donnelly, M. (2000). How well do elderly people compete individualised quality of life measures: An exploratory study. Quality of Life Research, 9, 369–75.

    Article  CAS  PubMed  Google Scholar 

  9. Dempster, M., Donnelly, M., & Fitzsimons, D. (2002). Generic, disease-specific and individualised approaches to measuring health-related quality of life among people with heart disease –a comparative analysis. Psychology and Health, 17, 447–57.

    Article  Google Scholar 

  10. Fitzpatrick, R. (1999). Assessment of quality of life as an outcome: Finding measurements that reflect individuals–priorities. Quality in Health Care, 8, 1–.

    Article  CAS  PubMed  Google Scholar 

  11. Griffiths, R., Jayasuriya, R., & Maitland, H. (2000). Development of a client-generated health outcome measure for community nursing. Australian and New Zealand Journal of Public Health, 24, 529–35.

    Article  CAS  PubMed  Google Scholar 

  12. Guyatt, G., Walter, S., & Norman, G. (1987). Measuring change over time: Assessing the usefulness of evaluative instruments. Journal of Chronic Diseases, 40, 171–78.

    Article  CAS  PubMed  Google Scholar 

  13. Haywood, K., Garratt, A. M., Dziedzic, K., & Dawes, P. T. (2003). Patient centered assessment of ankylosing spondylitis-specific health related quality of life: Evaluation of the patient generated index. The Journal of Rheumatology, 30, 764–73.

    PubMed  Google Scholar 

  14. Helmstadter, G. C. (1964). Principles of psychological measurement. New York: Appleton-Century Crofts.

    Google Scholar 

  15. Herd, R. M., Tidman, M. J., Ruta, D., & Hunter, J. A. A. (1997). Measurement of quality of life in atopic dermatitis: Correlation and validation of two different methods. British Journal of Dermatology, 136, 502–07.

    Article  CAS  PubMed  Google Scholar 

  16. Jenkinson, C., Stradling, J., & Petersen, S. (1998). How should we evaluate health status? A comparison of three methods in patients presenting with obstructive sleep apnoea. Quality of Life Research, 7, 95–00.

    Article  CAS  PubMed  Google Scholar 

  17. Jobe, J. (2003). Cognitive psychology and self-reports: Models and methods. Quality of Life Research, 12, 219–27.

    Article  PubMed  Google Scholar 

  18. Jobe, J. B., & Mingay, D. J. (1989). Cognitive research improves questionnaires. AJPH, 79, 1053–055.

    Article  CAS  Google Scholar 

  19. Jolles, B. M., Buchbinder, R., & Beaton, D. E. (2005). A study compared nine patient-specific indices for musculoskeletal disorders. Journal of Clinical Epidemiology, 58, 791–01.

    Article  PubMed  Google Scholar 

  20. Joyce, C., McGee, H., & O’Boyle, C. (1999). Individual quality of life: Approaches to conceptualisation and assessment. London: Psychology Press.

    Google Scholar 

  21. Katz, J. N., Larson, M. G., Philips, C. B., Fossel, A. H., & Liang, M. H. (1992). Comparative measurement sensitivity of short and longer health status instruments. Medical Care, 30, 917–25.

    Article  CAS  PubMed  Google Scholar 

  22. Kelly, T. L. (1927). Principles of psychological measurement. Yonkers: World Books.

    Google Scholar 

  23. Kliempt, P. (2001). Developing a methodology for the identification and selection of outcome measures for use in older people living in the community. PhD thesis, Department of Epidemiology and Public Health. Dundee, Scotland: University of Dundee.

  24. Larsen, R. J., & Fredrickson, B. L. (2003). Measurement issues in emotion research. In D. Kahneman, E. Diener, & N. Schwartz (Eds.), Well-being: The foundations of hedonic psychology (pp. 40–0). London: Russell Sage Publications.

    Google Scholar 

  25. Lintern, T. C., Beaumont, G., Kenealy, P. M., & Murrell, R .C. (2001). Quality of life (QoL) in severely disabled multiple sclerosis patients: Comparison of three QoL measures using multidimensional scaling. Quality of Life Research, 10, 371–78.

    Article  CAS  PubMed  Google Scholar 

  26. LLewellyn, C. D., McGurk, M., & Weinman, J. (2006). Head and neck cancer: To what extent can psychological factors explain differences between health-related quality of life and individual quality of life. British Journal of Oral and Mazillofacial Surgery, 44, 351–57.

    Article  CAS  Google Scholar 

  27. Macduff, C., & Russell, E. (1998). The problem of measuring change in individual health-related quality of life by postal questionnaire: Use of the patient-generated index in a disabled population. Quality of Life Research, 7, 761–19.

    Article  CAS  PubMed  Google Scholar 

  28. Nunnally, J. C. (1978). Psychometric theory. New York: McGraw-Hill.

    Google Scholar 

  29. Nunnally, J. C., & Bernstein, H. I. (1994). Psychometric theory (3rd ed.). New York: McGraw-Hill.

    Google Scholar 

  30. O’Boyle, C., McGee, H., Hickey, A., O’Malley, K., & Joyce, C. R. B. (1992). Individual QOL in patients undergoing hip replacement. Lancet, 339, 1088–091.

    Article  PubMed  Google Scholar 

  31. Patel, K. K., Veenstra, D. L., & Patrick, D. L. (2003). A review of selected patient-generated outcome measures and their application in clinical trials. Value in Health, 6, 595–03.

    Article  PubMed  Google Scholar 

  32. Poellmann, W., Busch, C., & Voltz, R. (2005). Lebensqualitat bei Multipler Sklerose: Messinstrumente, Bedeutung, Probleme und Perspektiven [Quality of life in multiple sclerosis: Measures, relevance, problems and perpsectives. Der Nervenarzt, 76, 154–69.

    Article  Google Scholar 

  33. Rankin, G., & Stokes, M. (1998). Reliability of assessment tools in rehabilitation: An illustration of appropriate statistical analysis. Clinical Rehabilitation, 12, 187–99.

    Article  CAS  PubMed  Google Scholar 

  34. Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality of life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes at http://www.hqlo.com/content/2/1/14 2004; 2.

  35. Robling, M. (2006). Measuring change in patient quality of life over time: An evaluation of scale responsiveness and patient response shift. PhD Thesis, Department of General Practice, Cardiff University.

  36. Ruta, D., Camfield, L., & Donaldson, C. (2006). Sen and the art of quality of life maintenance: Towards a working definition of quality of life. Wellbeing in Developing Countries (WeD) Research Group Working Paper. Available at http://www.bath.ac.uk/econ-dev/wellbeing/research/workingpaperpdf/wed12.pdf

  37. Ruta, D., Garratt, A. M., Leng, M., Russel, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life: The patient generated index. Medical Care, 32, 1109–126.

    Article  CAS  PubMed  Google Scholar 

  38. Ruta, D., Garratt, A. M., & Russell, I. T. (1999). Patient centred assessment of quality of life for patients with four common conditions. Quality in Health Care, 8, 22–9.

    Article  CAS  PubMed  Google Scholar 

  39. Ruta, D., Martin, F., Devine, J., Bevan, P., & Camfield, L. (2004) Assessing individual quality of life in developing countries: Piloting a global PGI in Ethiopia and Bangladesh. International Society for Quality of Life Research: Harmonizing International Health-Related Quality of Life (HRQOL) Research, Hong Kong

  40. Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health and quality of life outcomes at http:/ww.hq10.com/content/2/1/16

  41. Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality of life research. Social Science and Medicine, 48, 1531–548.

    Article  CAS  PubMed  Google Scholar 

  42. Streiner, D. L., & Norman, G. (1995). Health measurement scales: A Practical guide to their development and use Oxford: Oxford University Press.

    Google Scholar 

  43. Symon, A., MacDonald, A., & Ruta, D. (2002). Postnatal quality of life assessment: Introducing the mother-generated index. Birth, 29, 40–6.

    Article  PubMed  Google Scholar 

  44. Symon, A., MacKay, A., & Ruta, D. (2003). Postnatal quality of life: A pilot study using the mother-generated index. Journal of Advanced Nursing, 42, 21–9.

    Article  PubMed  Google Scholar 

  45. Tugwell, P., Bombardier, C., Buchanan, W. W., Goldsmith, C., Grace, E., Benett, K. J., et al. (1990). Methotrexate in rheumatoid-arthritis-impact on quality of life assessed by traditional standard-item and individualized patient preference health-status questionnaires. Archives of Internal Medicine, 150, 59–2.

    Article  CAS  PubMed  Google Scholar 

  46. Tully, M. P., & Cantrill, J. A. (2000). The validity of the modified patient generated index –a quantitative and qualitative approach. Quality of Life Research, 9, 509–20.

    Article  CAS  PubMed  Google Scholar 

  47. Tully, M. P., & Cantrill, J. A. (2002). The test-retest reliability of the modified patient generated index. Journal of Health Service Research Policy, 7, 81–9.

    Article  Google Scholar 

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Acknowledgement

This research was funded by the Economic and Social Research Council (ESRC) as part of a PhD scholarship.

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Authors and Affiliations

  1. WeD 3 East, University of Bath, Bath, BA2 7AY, UK

    Faith Martin & Laura Camfield

  2. Department of Psychology, University of Bath, Bath, BA2 7AY, UK

    Karen Rodham

  3. Wolfson Hyperbaric Medicine Unit, Ninewells Hospital, Level 7, University of Dundee, Dundee, DD1 9SY, UK

    Petra Kliempt

  4. School of Population and Health Sciences, University of Newcastle, William Leech Building, The Medical School, Framlington Place, Newcastle upon Tyne, NE2 4HH, UK

    Danny Ruta

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  1. Faith Martin
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  2. Laura Camfield
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  3. Karen Rodham
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  4. Petra Kliempt
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Correspondence to Faith Martin.

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Martin, F., Camfield, L., Rodham, K. et al. Twelve years–experience with the Patient Generated Index (PGI) of quality of life: a graded structured review. Qual Life Res 16, 705–715 (2007). https://doi.org/10.1007/s11136-006-9152-6

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  • DOI: https://doi.org/10.1007/s11136-006-9152-6

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