Outcomes in patient education programmes for people with rheumatic diseases: Results from a Delphi process and a study of feasibility and responsiveness
Corresponding Author
Renate Røe
National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Correspondence
Renate Røe, National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Pb. 23 Vinderen 0319, Oslo, Norway.
Email: renate.roe@diakonsyk.no
Search for more papers by this authorKjersti Grønning
Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway
Search for more papers by this authorLiv Rognerud Eriksson
Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Search for more papers by this authorHeidi A. Zangi
National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Faculty of Health, VID Specialized University, Oslo, Norway
Search for more papers by this authorCorresponding Author
Renate Røe
National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Correspondence
Renate Røe, National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Pb. 23 Vinderen 0319, Oslo, Norway.
Email: renate.roe@diakonsyk.no
Search for more papers by this authorKjersti Grønning
Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway
Search for more papers by this authorLiv Rognerud Eriksson
Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Search for more papers by this authorHeidi A. Zangi
National Advisory Unit on Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
Faculty of Health, VID Specialized University, Oslo, Norway
Search for more papers by this authorAbstract
Background
Patient education (PE) is recommended as an integral part of disease management for people with chronic inflammatory arthritis (IA). There is no consensus on how PE should be evaluated and which outcome measures should be used.
Objectives
This study had three aims: (a) to identify core aspects that PE for patients with IA may impact on; (b) to identify outcome measures to assess changes in these aspects; (c) to test the feasibility and responsiveness of the identified outcome measures.
Methods
A Delphi process was conducted to identify core aspects and outcome measures. Feasibility and responsiveness were tested in a pre-/post-test study with 3 months follow-up, including 104 patients attending PE programmes.
Results
Seven core aspects were identified: communication with health professionals, coping strategies, empowerment, knowledge about healthy life style, self-efficacy, understanding disease and treatment, and sharing experiences. Four outcome measures were identified; Arthritis Self Efficacy Scale (ASES-11), Effective Consumer scale (EC-17), Health Education Impact Questionnaire (heiQ) and Patient Activation Measure (PAM). At baseline, all measures had low rates of missing data. All measures except two heiQ subscales exhibited ceiling effects. Internal consistency was acceptable. At follow-up, statistically significant, but small improvements were found in EC-17 and three heiQ subscales.
Conclusion
ASES and EC-17 were found to be the most valid and feasible outcome measures to evaluate the identified core aspects of PE and can be recommended as outcome measures to assess PE programmes for patients with IA.
CONFLICT OF INTERESTS
The authors declare no conflicts of interest.
Supporting Information
| Filename | Description |
|---|---|
| msc1456-sup-0001-Appendix A.docxWord 2007 document , 22.1 KB |
Table S1. The systematic literature search terms in phase 2 of the Delphi process |
| msc1456-sup-0002-Appendix B.docxWord 2007 document , 16.6 KB |
Table S2. The programme content in 13 patient education programmes included in the feasibility and responsiveness study, phase 3 |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
REFERENCES
- Banerjee, A., Hendrick, P., Bhattacharjee, P., & Blake, H. (2018). A systematic review of outcome measures utilised to assess self-management in clinical trials in patients with chronic pain. Patient Education and Counseling, 101, 767–778. http://doi.org/10.1016/j.pec.2017.12.002
- Cohen, J. (1988). Statistical power analysis for the behavioral sciences ( 2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates.
10.1046/j.1526-4610.2001.111006343.x Google Scholar
- Combe, B., Landewe, R., Daien, C. I., Hua, C., Aletaha, D., Alvaro-Gracia, J. M., … van Vollenhoven, R. (2017). 2016 update of the EULAR recommendations for the management of early arthritis. Annals of the Rheumatic Diseases, 76, 948–959. https://doi.org/10.1136/annrheumdis-2016-210602
- Coulter, A., & Ellins, J. (2007). Effectiveness of strategies for informing, educating, and involving patients. British Medical Journal, 335, 24–27. https://doi.org/10.1136/bmj.39246.581169.80
- Deighton, C., O'Mahony, R., Tosh, J., Turner, C., Rudolf, M., &
Guideline Development Group (2009). Management of rheumatoid arthritis: summary of NICE guidance. British Medical Journal, 338, 710–712. https://dx.doi.org/10.1136/bmj.b702
10.1136/bmj.b702 Google Scholar
- Dejaco, C., Singh, Y. P., Perel, P., Hutchings, A., Camellino, D., Mackie, S., … American College of Rheumatology (2015). 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative. Annals of the Rheumatic Diseases, 74, 1799–1807. https://doi.org/10.1136/annrheumdis-2015-207492
- Eisele, A., Schagg, D., Kramer, L. V., Bengel, J., & Gohner, W. (2019). Behaviour change techniques applied in interventions to enhance physical activity adherence in patients with chronic musculoskeletal conditions: A systematic review and meta-analysis. Patient Education and Counseling, 102, 25–36. https://doi.org/10.1016/j.pec.2018.09.018
- Garratt, A. M., Klokkerud, M., Lochting, I., & Hagen, K. B. (2017). Rasch analysis of the Norwegian version of the Arthritis Self-Efficacy Scale (ASES). Scandinavian Journal of Rheumatology, 46, 33–39. https://doi.org/10.3109/03009742.2016.1155644
- Graffigna, G., Barello, S., Bonanomi, A., Lozza, E., & Hibbard, J. (2015). Measuring patient activation in Italy: Translation, adaptation and validation of the Italian version of the patient activation measure 13 (PAM13-I). BMC Medical Informatics and Decision Making, 15(109), 1–13. https://doi.org/10.1186/s12911-015-0232-9
- Gronning, K., Skomsvoll, J. F., Rannestad, T., & Steinsbekk, A. (2012). The effect of an educational programme consisting of group and individual arthritis education for patients with polyarthritis—A randomised controlled trial. Patient Education and Counseling, 88, 113–120. https://doi.org/10.1016/j.pec.2011.12.011
- Gronning, K., Rannestad, T., Skomsvoll, J. F., Rygg, L. O., & Steinsbekk, A. (2014). Long-term effects of a nurse-led group and individual patient education programme for patients with chronic inflammatory polyarthritis—A randomised controlled trial. Journal of Clinical Nursing, 23, 1005–1017. https://doi.org/10.1111/jocn.12353
- Gronning, K., Midttun, L., & Steinsbekk, A. (2016). Patients' confidence in coping with arthritis after nurse-led education; a qualitative study. BMC Nursing, 15(28), 1–8. https://doi.org/10.1186/s12912-016-0150-x
- Hamnes, B., Garratt, A., Kjeken, I., Kristjansson, E., & Hagen, K. B. (2010). Translation, data quality, reliability, validity and responsiveness of the Norwegian version of the Effective Musculoskeletal Consumer Scale (EC-17). BMC Musculoskeletal Disorders, 11(21), 1–8. https://doi.org/10.1186/1471-2474-11-21
- Hamnes, B., Hauge, M. I., Kjeken, I., & Hagen, K. B. (2011). ‘I have come here to learn how to cope with my illness, not to be cured': A qualitative study of patient expectations prior to a one-week self-management programme. Musculoskeletal Care, 9, 200–210. https://doi.org/10.1002/msc.212
- van der Heijde, D., Ramiro, S., Landewe, R., Baraliakos, X., Van den Bosch, F., Sepriano, A., … Braun, J. (2017). 2016 update of the ASAS-EULAR management recommendations for axial spondyloarthritis. Annals of the Rheumatic Diseases, 76, 978–991. https://doi.org/10.1136/annrheumdis-2016-210770
- Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Services Research, 39, 1005–1026. https://doi.org/10.1111/j.1475-6773.2004.00269.x
- Hibbard, J. H., Mahoney, E. R., Stockard, J., & Tusler, M. (2005). Development and testing of a short form of the patient activation measure. Health Services Research, 40, 1918–1930. https://doi.org/10.1111/j.1475-6773.2005.00438.x
- Jordan, J. L., Holden, M. A., Mason, E. E., & Foster, N. E. (2010). Interventions to improve adherence to exercise for chronic musculoskeletal pain in adults. Cochrane Database Systematic Reviews, 2010(1), 1–62. https://doi.org/10.1002/14651858.CD005956.pub2
- Junger, S., Payne, S. A., Brine, J., Radbruch, L., & Brearley, S. G. (2017). Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliative Medicine, 31, 684–706. https://doi.org/10.1177/0269216317690685
- Kristjansson, E., Tugwell, P. S., Wilson, A. J., Brooks, P. M., Driedger, S. M., Gallois, C., … Wells, G. A. (2007). Development of the effective musculoskeletal consumer scale. The Journal of Rheumatology, 34, 1392–1400. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17552066
- Lorig, K., Chastain, R. L., Ung, E., Shoor, S., & Holman, H. R. (1989). Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis and Rheumatism, 32, 37–44. https://doi.org/10.1002/anr.1780320107
- Miles, C. L., Pincus, T., Carnes, D., Taylor, S. J., & Underwood, M. (2011). Measuring pain self-efficacy. Clinical Journal of Pain, 27, 461–470. https://doi.org/10.1097/AJP.0b013e318208c8a2
- Moljord, I. E., Lara-Cabrera, M. L., Perestelo-Perez, L., Rivero-Santana, A., Eriksen, L., & Linaker, O. M. (2015). Psychometric properties of the Patient Activation Measure-13 among out-patients waiting for mental health treatment: A validation study in Norway. Patient Education and Counseling, 98, 1410–1417. https://doi.org/10.1016/j.pec.2015.06.009
- Newman, S., Steed, L., & Mulligan, K. (2004). Self-management interventions for chronic illness. Lancet, 364, 1523–1537. https://doi.org/10.1016/S0140-6736(04)17277-2
- Olsen, C. L., Lie, E., Kvien, T. K., & Zangi, H. A. (2016). Predictors of fatigue in rheumatoid arthritis patients in remission or in a low disease activity state. Arthritis Care & Research, 68, 1043–1048. https://doi.org/10.1002/acr.22787
- 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. https://doi.org/10.1016/j.pec.2006.12.002
- Richette, P., Doherty, M., Pascual, E., Barskova, V., Becce, F., Castaneda-Sanabria, J., … Bardin, T. (2017). 2016 updated EULAR evidence-based recommendations for the management of gout. Annals of the Rheumatic Diseases, 76, 29–42. https://dx.doi.org/10.1136/annrheumdis-2016-209707
- Smolen, J. S. (2016). Treat-to-target as an approach in inflammatory arthritis. Current Opinion in Rheumatology, 28, 297–302. https://doi.org/10.1097/BOR.0000000000000284
- Smolen, J. S., Breedveld, F. C., Burmester, G. R., Bykerk, V., Dougados, M., Emery, P., … van der Heijde, D. (2016). Treating rheumatoid arthritis to target: 2014 update of the recommendations of an international task force. Annals of the Rheumatic Diseases, 75, 3–15. https://doi.org/10.1136/annrheumdis-2015-207524
- Stenberg, U., Haaland-Overby, M., Fredriksen, K., Westermann, K. F., & Kvisvik, T. (2016). A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness. Patient Education and Counseling, 99, 1759–1771. https://doi.org/10.1016/j.pec.2016.07.027
- Taylor, P. C., Moore, A., Vasilescu, R., Alvir, J., & Tarallo, M. (2016). A structured literature review of the burden of illness and unmet needs in patients with rheumatoid arthritis: a current perspective. Rheumatology International, 36, 685–695. https://doi.org/10.1007/s00296-015-3415-x
- Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., … de Vet, H. C. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60, 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012
- Trevelyan, E. G., & Robinson, P. N. (2015). Delphi methodology in health research: How to do it? European Journal of Integrative Medicine, 7, 423–428. https://doi.org/10.1016/j.eujim.2015.07.002
- Zangi, H. A., Hauge, M. I., Steen, E., Finset, A., & Hagen, K. B. (2011). "I am not only a disease, I am so much more". Patients with rheumatic diseases' experiences of an emotion-focused group intervention. Patient Education and Counseling, 85, 419–424. https://doi.org/10.1016/j.pec.2010.12.032
- Zangi, H. A., Ndosi, M., Adams, J., Andersen, L., Bode, C., Bostrom, C., … European League Against Rheumatism (2015). EULAR recommendations for patient education for people with inflammatory arthritis. Annals of the Rheumatic Diseases, 74, 954–962. https://doi.org/10.1136/annrheumdis-2014-206807
- Zill, J. M., Dwinger, S., Kriston, L., Rohenkohl, A., Harter, M., & Dirmaier, J. (2013). Psychometric evaluation of the German version of the Patient Activation Measure (PAM13). BMC Public Health, 13(1027), 1–9. https://doi.org/10.1186/1471-2458-13-1027
