Advertisement

Quality of Life Research

, Volume 22, Issue 7, pp 1655–1664 | Cite as

Measurement issues in the evaluation of chronic disease self-management programs

  • Sandra Nolte
  • Gerald R. Elsworth
  • Stanton Newman
  • Richard H. Osborne
Article

Abstract

Objectives

To provide an in-depth analysis of outcome measures used in the evaluation of chronic disease self-management programs consistent with the Stanford curricula.

Methods

Based on a systematic review on self-management programs, effect sizes derived from reported outcome measures are categorized according to the quality of life appraisal model developed by Schwartz and Rapkin which classifies outcomes from performance-based measures (e.g., clinical outcomes) to evaluation-based measures (e.g., emotional well-being).

Results

The majority of outcomes assessed in self-management trials are based on evaluation-based methods. Overall, effects on knowledge—the only performance-based measure observed in selected trials—are generally medium to large. In contrast, substantially more inconsistent results are found for both perception- and evaluation-based measures that mostly range between nil and small positive effects.

Conclusions

Effectiveness of self-management interventions and resulting recommendations for health policy makers are most frequently derived from highly variable evaluation-based measures, that is, types of outcomes that potentially carry a substantial amount of measurement error and/or bias such as response shift. Therefore, decisions regarding the value and efficacy of chronic disease self-management programs need to be interpreted with care. More research, especially qualitative studies, is needed to unravel cognitive processes and the role of response shift bias in the measurement of change.

Keywords

Chronic disease Self-management Patient education Program evaluation Bias Outcomes assessment Quality of life PROMs 

References

  1. 1.
    Wagner, E., Davis, C., Schaefer, J., Von Korff, M., & Austin, B. (1999). A survey of leading chronic disease management programs: Are they consistent with the literature? Managed Care Quarterly, 7(3), 56–66.PubMedGoogle Scholar
  2. 2.
    World Health Organization. (2002). Innovative care for chronic conditions: building blocks for action. Geneva: World Health Organization.Google Scholar
  3. 3.
    Newman, S., Steed, L., & Mulligan, K. (2004). Self-management interventions for chronic illness. Lancet, 364(9444), 1523–1537.PubMedCrossRefGoogle Scholar
  4. 4.
    Barlow, J., Wright, C., Sheasby, J., Turner, A., & Hainsworth, J. (2002). Self-management approaches for people with chronic conditions: a review. Patient Education and Counseling, 48(2), 177–187.PubMedCrossRefGoogle Scholar
  5. 5.
    Lorig, K. R., González, V. M., & Laurent, D. D. (1999). The chronic disease self-management program: Leaders manual. Palo Alto: Stanford University.Google Scholar
  6. 6.
    Lorig, K. R. (2003). Editorial—self-management education: More than a nice extra. Medical Care, 41(6), 699–701.PubMedGoogle Scholar
  7. 7.
    Chodosh, J., Morton, S. C., Mojica, W., Maglione, M., Suttorp, M. J., Hilton, L., et al. (2005). Meta-analysis: chronic disease self-management programs for older adults. Annals of Internal Medicine, 143(6), 427–438.PubMedCrossRefGoogle Scholar
  8. 8.
    Warsi, A., Wang, P. S., LaValley, M. P., Avorn, J., & Solomon, D. H. (2004). Self-management education programs in chronic disease: A systematic review and methodological critique of the literature. Archives of Internal Medicine, 164(15), 1641–1649.PubMedCrossRefGoogle Scholar
  9. 9.
    Astin, J. A., Beckner, W., Soeken, K., Hochberg, M. C., & Berman, B. (2002). Psychological interventions for rheumatoid arthritis: A meta-analysis of randomized controlled trials. Arthritis and Rheumatism, 47(3), 291–302.PubMedCrossRefGoogle Scholar
  10. 10.
    Devos-Comby, L., Cronan, T., & Roesch, S. C. (2006). Do exercise and self-management interventions benefit patients with osteoarthritis of the knee? A metaanalytic review. The Journal of Rheumatology, 33(4), 744–756.PubMedGoogle Scholar
  11. 11.
    Warsi, A., LaValley, M. P., Wang, P. S., Avorn, J., & Solomon, D. H. (2003). Arthritis self-management education programs: A meta-analysis of the effect on pain and disability. Arthritis and Rheumatism, 48(8), 2207–2213.PubMedCrossRefGoogle Scholar
  12. 12.
    March, L., Amatya, B., Osborne, R., & Brand, C. (2010). Developing a minimum standard of care for treating people with osteoarthritis of the hip and knee. Best Practice & Research Clinical rheumatology, 24(1), 121–145.CrossRefGoogle Scholar
  13. 13.
    Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes Retrieved April 15, 2006, from http://www.hqlo.com/content/2/1/16.
  14. 14.
    Schwarz, N., & Strack, F. (1985). Cognitive and affective processes in judgements of subjective well-being: A preliminary model. In H. Brandstatter & E. Kirchler (Eds.), Economic psychology (pp. 439–447). Linz, Austria: R. Tauner.Google Scholar
  15. 15.
    Tourangeau, R., & Rasinski, K. (1988). Cognitive processes underlying context effects in attitude measurement. Psychological Bulletin, 103, 299–314.CrossRefGoogle Scholar
  16. 16.
    Krosnick, J. A. (1999). Survey research. Annual Review of Psychology, 50, 537–567.PubMedCrossRefGoogle Scholar
  17. 17.
    Crowne, D. P., & Marlowe, D. (1964). The approval motive: Studies in evaluative dependence. New York, London, Sydney: Wiley.Google Scholar
  18. 18.
    Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine, 48(11), 1507–1515.PubMedCrossRefGoogle Scholar
  19. 19.
    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(11), 1531–1548.PubMedCrossRefGoogle Scholar
  20. 20.
    Nolte, S., & Osborne, R. H. (2012). A systematic review of outcomes of chronic disease self-management interventions. Quality of Life Research [Epub ahead of print 2012 Oct 31].Google Scholar
  21. 21.
    Lorig, K., Lubeck, D., Kraines, R. G., Seleznick, M., & Holman, H. R. (1985). Outcomes of self-help education for patients with arthritis. Arthritis and Rheumatism, 28(6), 680–685.PubMedCrossRefGoogle Scholar
  22. 22.
    Cohen, J. (1988). Statistical power analysis for the behavioural sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates.Google Scholar
  23. 23.
    Heuts, P. H. T. G., de Bie, R., Drietelaar, M., Aretz, K., Hopman-Rock, M., Bastiaenen, C. H. G., et al. (2005). Self-management in osteoarthritis of hip or knee: A randomized clinical trial in a primary healthcare setting. The Journal of Rheumatology, 32(3), 543–549.PubMedGoogle Scholar
  24. 24.
    Hopman-Rock, M., & Westhoff, M. H. (2000). The effects of a health educational and exercise program for older adults with osteoarthritis of the hip or knee. The Journal of Rheumatology, 27(8), 1947–1954.PubMedGoogle Scholar
  25. 25.
    Keefe, F. J., Caldwell, D. S., Wiliams, D. A., Gil, K. M., Mitchell, D., Robertson, C., et al. (1990). Pain coping skills training in the management of osteoarthritic knee pain: A comparative study. Behavior Therapy, 21, 49–62.CrossRefGoogle Scholar
  26. 26.
    Barlow, J. H., Turner, A. P., & Wright, C. C. (2000). A randomized controlled study of the Arthritis self-management programme in the UK. Health Education Research, 15(6), 665–680.PubMedCrossRefGoogle Scholar
  27. 27.
    Lorig, K., Feigenbaum, P., Regan, C., Ung, E., Chastain, R. L., & Holman, H. R. (1986). A comparison of lay-taught and professional-taught arthritis self-management courses. Journal of Rheumatology, 13(4), 763–767.PubMedGoogle Scholar
  28. 28.
    Lorig, K., González, V. M., & Ritter, P. (1999). Community-based Spanish language arthritis education program: A randomized trial. Medical Care, 37(9), 957–963.PubMedCrossRefGoogle Scholar
  29. 29.
    Lorig, K., Seleznick, M., Lubeck, D., Ung, E., Chastain, R. L., & Holman, H. R. (1989). The beneficial outcomes of the arthritis self-management course are not adequately explained by behavior change. Arthritis and Rheumatism, 32(1), 91–95.PubMedCrossRefGoogle Scholar
  30. 30.
    Goeppinger, J., Arthur, M. W., Baglioni, A. J., Jr, Brunk, S. E., & Brunner, C. M. (1989). A reexamination of the effectiveness of self-care education for persons with arthritis. Arthritis and Rheumatism, 32(6), 706–716.PubMedCrossRefGoogle Scholar
  31. 31.
    Scholten, C., Brodowicz, T., Graninger, W., Gardavsky, I., Pils, K., Pesau, B., et al. (1999). Persistent functional and social benefit 5 years after a multidisciplinary arthritis training program. Archives of Physical Medicine and Rehabilitation, 80, 1282–1287.PubMedCrossRefGoogle Scholar
  32. 32.
    Taal, E., Riemsma, R. P., Brus, H. L., Seydel, E. R., Rasker, J. J., & Wiegman, O. (1993). Group education for patients with rheumatoid arthritis. Patient Education and Counseling, 20(2–3), 177–187.PubMedCrossRefGoogle Scholar
  33. 33.
    Haas, M., Groupp, E., Muench, J., Kraemer, D., Brummel-Smith, K., Sharma, R., et al. (2005). Chronic disease self-management program for low back pain in the elderly. Journal of Manipulative and Physiological Therapeutics, 28(4), 228–237.PubMedCrossRefGoogle Scholar
  34. 34.
    Von Korff, M., Moore, J. E., Lorig, K., Cherkin, D. C., Saunders, K., González, V. M., et al. (1998). A randomized trial of a lay person-led self-management group intervention for back pain patients in primary care. Spine, 23(23), 2608–2615.CrossRefGoogle Scholar
  35. 35.
    LeFort, S. M., Gray-Donald, K., Rowat, K. M., & Jeans, M. E. (1998). Randomized controlled trial of a community-based psychoeducation program for the self-management of chronic pain. Pain, 74(2–3), 297–306.PubMedCrossRefGoogle Scholar
  36. 36.
    Burckhardt, C. S., Mannerkorpi, K., Hedenberg, L., & Bjelle, A. (1994). A randomized, controlled clinical trial of education and physical training for women with fibromyalgia. Journal of Rheumatology, 21, 714–720.Google Scholar
  37. 37.
    Fu, D., Fu, H., McGowan, P., Shen, Y.-E., Zhu, L., Yang, H., et al. (2003). Implementation and quantitative evaluation of chronic disease self-management programme in Shanghai, China: Randomized controlled trial. Bulletin of the World Health Organization, 81(3), 174–182.PubMedGoogle Scholar
  38. 38.
    Griffiths, C., Motlib, J., Azad, A., Ramsay, J., Eldridge, S., Feder, G., et al. (2005). Randomised controlled trial of a lay-led self-management programme for Bangladeshi patients with chronic disease. British Journal of General Practice, 55, 831–837.PubMedGoogle Scholar
  39. 39.
    Lorig, K. R., Ritter, P. L., & González, V. M. (2003). Hispanic chronic disease self-management—a randomized community-based outcome trial. Nursing Research, 52(6), 361–369.PubMedCrossRefGoogle Scholar
  40. 40.
    Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W., Bandura, A., Ritter, P., et al. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization. Medical Care, 37(1), 5–14.PubMedCrossRefGoogle Scholar
  41. 41.
    Gibbons, F. X. (1999). Social comparison as a mediator of response shift. Social Science and Medicine, 48(11), 1517–1530.PubMedCrossRefGoogle Scholar
  42. 42.
    Prochaska, J. O., Redding, C. A., & Evers, K. E. (2008). The transtheoretical model and stages of change. In K. Glanz, F. M. Lewis, & B. K. Rimer (Eds.), Health behavior and health education: Theory, research, and practice (4th ed., pp. 97–122). San Francisco: Wiley.Google Scholar
  43. 43.
    Buunk, B., Gibbons, F., & Visser, A. (2002). The relevance of social comparison processes for prevention and health care. Patient Education and Counseling, 47, 1–3.PubMedCrossRefGoogle Scholar
  44. 44.
    Osborne, R. H., Batterham, R., & Livingston, J. (2011). The evaluation of chronic disease self-management support across settings: The international experience of the health education impact questionnaire monitoring system. Nursing Clinics of North America, 46(3), 255–270.PubMedCrossRefGoogle Scholar
  45. 45.
    Brady, T. (1997). Do common arthritis self-efficacy measures really measure self-efficacy? Arthritis Care and Research, 10(1), 1–8.PubMedCrossRefGoogle Scholar
  46. 46.
    Osborne, R. H., Elsworth, G. R., & Whitfield, K. (2007). The health education impact questionnaire (heiQ): An outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Education and Counseling, 66, 192–201.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2012

Authors and Affiliations

  • Sandra Nolte
    • 1
    • 2
  • Gerald R. Elsworth
    • 2
  • Stanton Newman
    • 3
  • Richard H. Osborne
    • 2
  1. 1.Medical Clinic for PsychosomaticsCharité–University Medicine BerlinBerlinGermany
  2. 2.Public Health Innovation, Population Health Strategic Research Centre, School of Health and Social Development, Faculty of HealthDeakin UniversityBurwoodAustralia
  3. 3.School of Health SciencesCity University LondonLondonUK

Personalised recommendations