Advertisement

Quality of Life Research

, Volume 16, Issue 6, pp 1039–1051 | Cite as

‘Translation is not enough’: using the Global Person Generated Index (GPGI) to assess individual quality of life in Bangladesh, Thailand, and Ethiopia

  • Laura CamfieldEmail author
  • Danny Ruta
Original Paper

Abstract

Currently few subjective measures of Quality of Life (QoL) are available for use in developing countries, which limits their theoretical, methodological, and practical contribution (for example, exploring the relationship between economic development and QoL, and ensuring effective and equitable service provision). One reason for this is the difficulty of ensuring that translated measures preserve conceptual, item, semantic, operational, measurement; and functional equivalence (Herdman, M., Fox-Rushby, J., & Badia, X. (1998). Quality of Life Research, 7, 331), which is illustrated by an account of the translation, pre-piloting, and administration of a new individualised QoL measure, the Global Person Generated Index or ‘GPGI’. The GPGI is based on the widely used Patient Generated Index (Ruta, Camfield, & Martin, (2004) Quality of Life Research, 13, 1545.) and offers many of the advantages of the participatory approaches commonly used in developing countries, with added methodological rigour, and quantitative outcomes. It was successfully validated in Bangladesh, Thailand, and Ethiopia, using quantitative and qualitative methods—open-ended, semi-structured interviews (SSIs), conducted immediately post-administration. Both the measure and method of ‘qualitative validation’ described later in the paper offer an exciting alternative for future researchers and practitioners in this field. The quantitative results suggest the GPGI shows cultural sensitivity, and is able to capture both the areas that are important to respondents, and aspects of life one would expect to impact on QoL in developing countries. There were strong correlation between scores from the GPGI and SSIs for the area of health, and moderate correlations for ‘material wellbeing’ (MWB)(‘Material wellbeing’ refers to respondents’ perceptions of their achievement in the areas of farming, debt reduction, assets, crops, livestock, job, land, property, and agriculture) and children. Weak to moderate correlations were observed between the Satisfaction with Life Scale and the GPGI; however, the highest coefficient was between the GPGI and the most conceptually similar item. Statistically significant differences were seen in GPGI scores between rich and poor, urban and rural respondents, and different countries. Health and material wellbeing scores, derived from the SSIs, also showed a linear relationship with GPGI scores, with a suggestion of curvilinearity at the higher levels, as predicted by a general QoL causal model. In conclusion, the GPGI has great potential for use in this area, especially when supported by extensive interviewer training, and supplemented with a cognitive appraisal schedule.

Keywords

Bangladesh Ethiopia Individualised quality of life measures Patient Generated Index Qualitative validation methods Thailand 

Abbreviations

DR

Danny Ruta

ESRC

Economic and Social Research Council

GPGI

Global Person Generated Index

LC

Laura Camfield

MWB

Material wellbeing

GPGI

Patient Generated Index

QoL

Quality of Life

SEIQoL

Schedule for the Evaluation of Individual Quality of Life

SEIQoL-DW

Schedule for the Evaluation of Individual Quality of Life, directweighting

SSI

Semi structured interview

SWLS

Satisfaction with life scale

VAS

Visual analogue scale

WeD

Wellbeing in developing countries ESRC Research Group

Notes

Acknowledgements

Many thanks to the Lead Researchers on QoL in the WeD Countries whose dedication in collecting the original data made this paper possible: Kaneta Choudhury in Bangladesh, Bethlehem Tekola and Ashebir Desalegn in Ethiopia, and Darunee Jongudomkarn and Malee Sabaiying in Thailand. Thanks also to Pip Bevan and Joe Devine for supervising the initial pilot work in Ethiopia and Bangladesh respectively.

References

  1. 1.
    Ahmed, S., Mayo, N., Wood-Dauphinee, S., Hanley, J., & Cohen, S. (2005). Using the patient generated index to evaluate response shift post-stroke. Quality of Life Research, 14, 2247–2257.PubMedCrossRefGoogle Scholar
  2. 2.
    Barofsky, I. (1996). Cognitive aspects of QoL assessment. In B. Spilker (Ed.), QOL and pharmacoeconomics in clinical trials(2nd ed.). Philadelphia: Lippincott-RavenGoogle Scholar
  3. 3.
    Barofsky, I., Erickson, P., & Eberhardt, M. (2004). Comparison of a single global item and an index of a multi-item health status measure among persons with and without diabetes in the US. Quality of Life Research, 1671–1681.Google Scholar
  4. 4.
    Baumeister, R. F., & Leary, M. R. (1995). The need to belong: Desire for interpersonal attachments as a fundamental human motivation. Psychological Bulletin, 117, 497–529.PubMedCrossRefGoogle Scholar
  5. 5.
    Bevan, P., Kebede, K., & Pankhurst, A. (2003). A report on a very informal pilot of the Person Generated Index(c) of Quality of Life in Ethiopia. Unpublished manuscript, ESRC Wellbeing in Developing Countries, Swindon, UK.Google Scholar
  6. 6.
    Bowden, A., Fox-Rushby, J., Nyandieka, L., & Wanjau, J. (2002). Methods for pre-testing and piloting survey questions: Illustrations from the KENQOL survey of HR-QoL. Health Policy and Planning, 17, 322–330.PubMedCrossRefGoogle Scholar
  7. 7.
    Brief, A. P., Butcher, A. H., George, J. M., & Link, K.E. (1993). Integrating bottom-up and top-down theories of SWB: The case of health. Journal of Personality and Social Psychology, 64, 646–653.PubMedCrossRefGoogle Scholar
  8. 8.
    Camfield, L., & on behalf of the WeD Group. (2007). QoL in developing nations (including the impact of globalisation). In K. Land (Ed.), Encyclopaedia of Social Indicators and QoL Research (Vol. 3): Springer Publishing CompanyGoogle Scholar
  9. 9.
    Camfield, L., Choudhury, K., & Devine J. (2006). Relationships, happiness, and wellbeing: Insights from Bangladesh. Wellbeing in Developing Countries (WeD) Working Paper, no: 14Google Scholar
  10. 10.
    Camilleri-Brennan, J., Ruta, D., & Steele, R. (2002). Patient generated index: New instrument for measuring quality of life in patients with rectal cancer. World Journal of Surgery, 26, 1354–1359.PubMedCrossRefGoogle Scholar
  11. 11.
    Clark, A., Diener, E., Georgellis, Y., & Lucas, R. (2004). Unemployment alters the set-point for life satisfaction. Psychological Sciences, 15, 8–13.CrossRefGoogle Scholar
  12. 12.
    Cummins, R. (1996). The domains of life satisfaction: An attempt to order chaos. Social Indicators Research, 38, 303–328.CrossRefGoogle Scholar
  13. 13.
    DeNeve, K. M., & Cooper, H. (1998). The happy personality: A meta analysis of 137 personality traits and subjective well-being. Psychological Bulletin, 1242, 197–229.CrossRefGoogle Scholar
  14. 14.
    Diener, E., Emmons, R., Larsen, J. & Griffin, S. (1985). The satisfaction with life scale. J Personality Assessment, 49, 71–75.PubMedCrossRefGoogle Scholar
  15. 15.
    Fitzpatrick, R., Davey, C., Buxton, M. J., & Jones D. R. (1998). Evaluating patient-based outcome measures for use in clinical trials. Health Technology Assessment, 2(i-iv), 1–74.PubMedGoogle Scholar
  16. 16.
    Frey, B. S., & Stutzer, A. (2002). What can economists learn from happiness research? Journal of Economic Literature, XL, 402–435.CrossRefGoogle Scholar
  17. 17.
    Helliwell, J. F. (2003). How’s life? Combining individual and national variables explain subjective well-being. Economic Modelling, 20, 331–360.CrossRefGoogle Scholar
  18. 18.
    Herdman, M., Fox-Rushby, J., & Badia, X. (1998). A model of equivalence in the cultural adaptation of HRQL instruments: the universalist approach. Quality of Life Research, 7, 323–355.PubMedCrossRefGoogle Scholar
  19. 19.
    Hickey, A. M., Bury, G., O’Boyle, C. A., Bradley, F., O’Kelly, F. D., & Shannon, W. (1996). A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. British Medical Journal, 313, 29–33.PubMedGoogle Scholar
  20. 20.
    Inglehardt, R. (1990). Culture shift. Princeton: Princeton University Press.Google Scholar
  21. 21.
    Jongudomkarn, D., & Camfield, L. (2006). Exploring the quality of life of people in North Eastern and Southern Thailand. Social Indicators Research, 78, 489–530.CrossRefGoogle Scholar
  22. 22.
    Koivumaa-Honkanen, H., Hokanen, R., Viinamaki, H., Heikkila, K., Kaprio, J., & Koskenvuo, M. (2001). Life satisfaction and suicide: A 20 year follow-up study. American Journal of Psychiatry, 158, 433–439.PubMedCrossRefGoogle Scholar
  23. 23.
    Lucas, A. E., Clark, A. E., Georgellis, Y., & Diener, E. (2003). Re-examining adaptation and the set point model of happiness: Reactions to changes in marital status. Journal of Personality and Social Psychology, 84, 527–539.PubMedCrossRefGoogle Scholar
  24. 24.
    Mallinson, S. (2002). Listening to respondents: A qualitative assessment of the short-form 36 health status questionnaire. Social Science and Medicine, 54, 11–21.PubMedCrossRefGoogle Scholar
  25. 25.
    Myers, D. G. (1999). Close relationships and quality of life. In D. Kahneman & E. Diener (Eds.), Well being: The foundations of hedonic psychology(pp. 434–450). New York: Russell Sage Foundation.Google Scholar
  26. 26.
    Newman, D. L., Tellegen, A., & Bouchard, T. J. (1998). Individual differences in adult ego development: Sources of influence in twins reared apart. Journal of Personality and Social Psychology, 744, 985–995.CrossRefGoogle Scholar
  27. 27.
    O’Boyle, C., McGee, H., Hickey, A., O’Malley, K., & Joyce C. R. B. (1992). Individual QOL in patients undergoing hip replacement. Lancet, 339, 1088–1091.PubMedCrossRefGoogle Scholar
  28. 28.
    Patel, K., Veenstra, D., & Patrick, D. (2003). A review of selected patient-generated outcome measures and their application in clinical trials. Value in Health, 6, 595–603.PubMedCrossRefGoogle Scholar
  29. 29.
    Paterson, C., & Britten, N. (2003). Acupuncture for people with chronic illness: Combining qualitative and quantitative outcome assessment. Journal of Alternative and Complementary Medicine, 9, 671–681.CrossRefGoogle Scholar
  30. 30.
    Pavot, W., & Diener, E. (1993). Review of the satisfaction with life scale. Psychological Assessment, 5, 164–172.CrossRefGoogle Scholar
  31. 31.
    Rothwell, P. (1997). Doctors and patients don’t agree: study of patients’ and doctors’ perceptions and assessments of disability in MS. British Medical Journal, 314, 1580–1583.PubMedGoogle Scholar
  32. 32.
    Ruta, D. A., 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) Working Paper no. 12. University of Bath, UKGoogle Scholar
  33. 33.
    Ruta, D. A., Camfield, L., & Martin, F. (2004). Assessing individual quality of life in developing countries: Piloting a GPGI in Ethiopia and Bangladesh. Quality of Life Research, 13, 1545.Google Scholar
  34. 34.
    Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life: The patient generated index (GPGI). The Patient Generated Index, Med Care, 32, 1109–1126.Google Scholar
  35. 35.
    Ruta, D. A., 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, 22–29.PubMedCrossRefGoogle Scholar
  36. 36.
    Schmidt, A., & Bullinger, M. (2007). Cross-cultural quality of life assessment approaches and experiences from the health care field. In I. Gough & J.A. McGregor (Eds.) Wellbeing in developing countries: New approaches and research strategies. Cambridge: Cambridge University Press.Google Scholar
  37. 37.
    Sen, A. (1985). Commodities and capabilities. Amsterdam: North-Holland.Google Scholar
  38. 38.
    Sherman, A. M., de Vries, B., & Lansford, J. E. (2000). Friendship in childhood and adulthood: Lessons across the life span. International Journal of Aging and Human Development, 51, 31–51.PubMedCrossRefGoogle Scholar
  39. 39.
    Streiner, D., & Norman, G. (1995). Health measurement scales: A practical guide to their development and use. Oxford: Oxford University Press.Google Scholar
  40. 40.
    Tourangeau, R., Rips, L., & Rasinski, K. (2000). The psychology of survey response. Cambridge: Cambridge University Press.Google Scholar
  41. 41.
    Tully, M., & Cantril, J. (2000). The validity of the modified patient generated index—a qualtitative and qualitative approach. Quality of Life Research, 9, 509–520.PubMedCrossRefGoogle Scholar
  42. 42.
    Van Montfort, K., Oud, J., & Satorra, A. (2004). Recent developments on structural equation models: Theory and applications. Dordrecht: Kluwer Academic Publishers.Google Scholar
  43. 43.
    Ware, N., Tugenberg, T., & Dickey, B. (2003). Ethnography and measurement in mental health: Qualitative validation of a measure of continuity of care (CONNECT). Qualitative Health Research, 13, 1393–1406.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2007

Authors and Affiliations

  1. 1.Wellbeing in Developing Countries ESRC Research GroupUniversity of BathBathUK
  2. 2.Epidemiology & Public Health, School of Population & Health SciencesUniversity of NewcastleNewcastle upon tyneUK

Personalised recommendations