Improvement and Backsliding after Chronic-disease Self-management Education in Japan: One-year Cohort Study

INTRODUCTION

The burden of chronic diseases and disabilities is increasing worldwide. People affected by chronic diseases and disabilities can benefit from learning specific techniques for self-managing their conditions. The Chronic Disease Self-Management Program (CDSMP) (Lorig et al., 1999a) is a behavioral intervention that has been implemented in at least 36 countries (Lorig, 2015).

Evidence from English-speaking countries indicates that the CDSMP is useful, with beneficial effects on psychological health and on some health behaviors (Brady et al., 2013; Ory et al., 2013). In Chinese populations (in Shanghai) (Fu et al., 2003) and Hong Kong (Siu, Chan, Poon, Chui, & Chan, 2007), short-term benefits of the CDSMP included maintenance or improvement of health status and health-related behavior, less utilization of health-care services, better self-management skills, and positive psychological changes (e.g., greater self-efficacy and less depression). In South Korea, the CDSMP increased self-efficacy and physical activity (Kim & Youn, 2015). In Japan, a 6-month follow- up study also showed the CDSMP’s positive outcomes: increased self-efficacy and skills for coping with health problems, improvements in self-management behaviors and health status, and the possibility of enhanced quality of daily life (Yukawa et al., 2010).

Interventions to help people with chronic conditions should of course have benefits that persist. In some previous studies, at least a few of the benefits of self-management education for people with chronic conditions persisted for one year or longer (Barlow et al., 2009a; Brady et al., 2013; Lorig et al., 2001a, Lucas et al., 2001, Yip et al., 2008). One study of an arthritis-specific program found that some benefits persisted for at least 3 years without reinforcement (Lorig, Ritter, Laurent, & Fries, 2004), and another found that some might be maintained for as long as 8 years (Barlow et al., 2009a). In contrast, in other studies the benefits of such programs decayed over time (Caplin & Creer, 2001; D'Souza et al., 2000; Lorig, Lubeck, Kraines, Seleznick, & Holman, 1985; Norris, Lau, Smith, Schmid, & Engelgau, 2002). Also among some CDSMP participants in Japan, such decay has been found with regard to anxiety and depression (Park, 2013a). The present study addresses the question of whether similar patterns of improvement and decay also occur with other important outcomes: self-evaluated health status, coping with symptoms, self-efficacy to manage symptoms, etc. Also included here are 1- year follow-up results regarding healthcare utilization, and implications for further research.

METHODS

3. Data Collection

Time 1 (baseline) data were collected immediately before the first workshop session (n=253), Time 2 data were collected 3 months after the last workshop session (n= 202), Time 3 data were collected 3 months after Time 2 (n=198), and Time 4 data were collected 6 months after Time 3, i.e. 12 months after the last workshop session (n=184). Thus, of the 253 participants who provided baseline data, 184 also provided data at Time 4. Those 184 provided data even at the completion of the follow-up period, so they are referred to here as “completers.” The 69 who provided data at baseline but not at Time 4 are referred to as “non-completers”(Table 1).

Table 1.

Patterns of Questionnaire Return(N=253)

5. Analysis

The completers were compared with the non-completers using x² tests and Mann-Whitney U tests (Tables 2, 3).

Table 2.

Demographic and Clinical Characteristics, Including Comparisons between Completers and Non-completers

Table 3.

Comparisons between Completers and Non-completers at Baseline

The data on health status, self-management behaviors, and psychological changes from Time 1 through Time 4 were analyzed with the paired t-test. The data on disability, social/role limitations, and utilization of medical services from Time 1 through Time 4 were analyzed with the Wilcoxon signed-rank test, because the frequency distributions of those data were very strongly right-skewed. For each outcome measure there were three comparisons: Time 1 to Time 2, Time 1 to Time 3, and Time 1 to Time 4. To minimize the possibility of Type-1 errors in the three comparisons, the Bonferroni correction was used and thus for statistical significance the ⍺ was set at .017 rather than at .05 (because .05/3=.017).

For the data that were approximately normally distributed, the means of the changes from Time 1 to Times 2, 3, and 4 were divided by the standard deviation of the Time 1 data, to obtain standardized effect sizes. Unstandardized effect sizes can be computed from the results shown in Table 4.

Table 4.

One Year of Follow-up after the Japanese Chronic Disease Self-management Program(N=184)

The data were analyzed with version 20 of SPSS. As described above, for statistical significance in the comparisons between completers and non-completers the ⍺ value was 0.05 (Tables 2, 3). Also as described above, for statistical significance in the comparisons between baseline measurements and follow-up measurements the ⍺ value after Bonferroni correction was 0.017 (Table 4).

RESULTS

DISCUSSION

As an overall summary of these results, it is noteworthy, first, that self-evaluated health status, health-related distress, and coping with symptoms all improved after the program. Second, it is equally important to note that those improvements were followed by some decay. The use of medical services did not change. Below these results are compared with some results from other countries, and then the short-term and long-term outcomes are discussed in more detail.

Comparing the 1-year results with those from other countries, it is noteworthy that health-related distress decreased and self-efficacy increased, both in this study and in the US (Lorig et al., 2001a, 2001b). Three other measures showed no significant improvements either in this study or in the US: fatigue, social/role limitations, and disability (Lorig et al., 2001a). With no intervention, disability scores can worsen by as much as 0.03 per year (Leveille et al.1998), but after the Japanese CDSMP disability scores did not worsen over 1 year. This suggests that the Japanese CDSMP prevented deterioration in the ability to do common daily activities.

Results of this study are different from previous research with regard to 3 measures. Self-evaluated health status improved in this study, but it did not change in the US (Lorig et al., 2001a, 2001b). On two other measures, there were no significant changes in this study, but there were improvements in the US: physician visits (Lorig et al., 2001a, 2001b) and ER visits (Lorig et al., 2001a, Lorig et al., 2001b). In the US, the CDSMP has been shown to reduce healthcare costs through decreases in ER visits and hospitalizations (Ahn et al., 2013). The lack of decreases in utilization of medical services in Japan is a noteworthy difference from the results in the US. This might be related to differences between healthcare insurance systems in the two countries, but another quite likely explanation is that the participants in this study used medical services very rarely even at baseline. The median number of physician visits was only 3 per 3 months at baseline. All of the other utilization data at baseline already had median values of 0 times per 3 months, so there was no possibility for any improvement (i.e. for decreases from 0). Thus, the potential for the CDSMP to reduce healthcare expenditures in Japan is still unknown. The economic effects of the Japan CDSMP should be studied in people with higher levels of healthcare- service utilization at baseline. They should be studied among people who have chronic conditions and are likely to require hospitalization due to an exacerbation that might be prevented by better self-management.

Regarding now the short-term and long-term outcomes, statistically significant short-term (less than 1 year) benefits were seen in 4 measures: self-evaluated health status, health distress, coping with symptoms, and self-efficacy (starting at Time 3), and statistically significant long-term (1 year) benefits were also seen in those 4 measures. The significant improvement from Time 1 to Time 4 on the scale of “Coping with symptoms” indicates that the participants may have used the skills that they learned in the CDSMP for many months after the program had ended. Future analyses and research could determine whether certain coping skills are particularly useful to certain participants, and which components of the CDSMP have the greatest influence on participants with various chronic diseases.

When evaluating any educational program, it is important to ask whether the benefits of the program are maintained (Green, 1977). Green (1977) used the term “decay of impact” to describe what happens when the short-term benefits of an educational intervention do not persist and instead the participants go back toward their original status. This decay is also called backsliding, attenuation, or, in some contexts, relapse. In the present context, decay of impact would mean going back toward the baseline health status, self-management behaviors, psychological status, etc. As shown by their mean values and standardized effect sizes, for 6 variables (self-evaluated health status, health distress, physical exercise, coping with symptoms, communication with medical doctors, and self-efficacy to manage symptoms) there were improvements from Time 1 to Time 2 and from Time 2 to Time 3, but those improvements were not completely maintained to Time 4 (Table 4). The magnitudes of the attenuations varied between measures, but they occurred on all of the measures for which there was any short-term improvement. That is, all short-term improvements were followed by backsliding. This is consistent with the previously reported results regarding anxiety and depression (Park et al., 2013). It is also consistent with some studies of other health-education interventions (Caplin & Creer, 2001; D'Souza et al., 2000; Norris et al., 2002). There is much literature on relapse in smoking cessation and in rehabilitation from drug and alcohol abuse (Marlatt & Dennis (eds), 2005). Swerissen (2004), referring to Quigley & Marlatt (1999), noted that after beneficial health-related education “there is a high probability that they [the participants] will not maintain the change they make.” In the context of self-management education for people with chronic diseases, Lorig et al (2004) wrote that “attenuation of effect is to be expected” and “even long-term longitudinal trials have failed to show significant results beyond 1 year.” Almost 10 years later, Brady et al. (2013) meta-analyzed the available results, and they concluded that “small to moderate improvements in psychological health and selected health behaviors” remained even 12 months after the CDSMP, when it is implemented in small groups in English-speaking countries. Those findings are certainly encouraging. Unfortunately, reports of the long-term effects of the CDSMP are relatively rare. Brady et al.’s search in preparation for their meta-analysis found only a few trials with long-term follow up, and it is still unclear to what extent decay of impact is the exception and to what extent it is the rule. More information about persistence or attenuation of the CDS MP’s benefits is needed, both to decide how the program should be implemented and to know whether reinforcements (sometimes called “boosters”) are useful (Park et al., 2013). This should be another main focus of future research.

It is also important to note that all studies of the CDSMP uniquely contribute to professional nursing expertise and nursing research. The program’s original developer created the CDSMP from her nursing background (Lorig, 2015), the CDSMP textbook (Lorig et al., 1993) was translated into Japanese by a nurse, and nurses are welcome as CDSMP workshop facilitators. In addition, nursing care involving adults must be concerned with issues of chronic diseases and patient education, and the CDSMP has been extremely influential in the worldwide movement toward a greater role of patients in the management of their chronic conditions. Understanding of both the benefits and the limitations of chronic-disease self-management education is essential for adult-nursing practice. Exploration of the CDSMP’s challenges and potentials is an excellent focus for further contributions of nursing research to patients’ well-being and to population health.

CONCLUSION

The findings of this study should not be generalized to the non-completers, and the lack of a control group limits cause-effect inferences. Those limitations notwithstanding, one conclusion from this study is that some of the improvements seen after the CDSMP in Japan can last for at least 1 year. Also noteworthy was the decay of impact that was seen with regard to self-evaluated health status, health distress, physical exercise, coping with symptoms, communication with medical doctors, and self-efficacy to manage symptoms. Additional interventions to prevent that decay are likely to be needed. The outcomes on which there was no decay also had no noteworthy improvement: fatigue, pain, disability in daily life, social/role limitations, and utilization of medical services.

Further studies of the CDSMP in Japan should include randomized controls for as long as is feasible (as has already been done frequently in the US and elsewhere). In addition, studies of the economic impact of the CDSMP in Japan should enroll participants with higher baseline levels of healthcare-service utilization, including use of rehabilitation services. Those studies should use longer follow- up, longer recall periods for the baseline values, or both. Finally, the decay or persistence of the program’s benefits should be an object of study in itself, particularly with regard to preventing and reducing disabilities and with regard to rehabilitation needs. That might require follow- up well beyond one year and is important not only in Japan.

REFERENCES

• Ahn, S., Basu, R., Smith, M. L., Jiang, L., Lorig, K., Whitelaw, N., et al , (2013), The impact of chronic disease self-management programs: Healthcare savings through a community-based intervention, BMC Public Health, 13, p1141. [https://doi.org/10.1186/1471-2458-13-1141]
• Barlow, J., Turner, A., Swaby, L., Gilchrist, M., Wright, C., & Doherty, M., (2009a), An 8-yr follow-up of arthritis self-management programme participants, Rheumatology, 48, p128-133.
• Brady, T. J., Murphy, L., O’Colmain, B. J., Beauchesne, D., Daniels, B., Greenberg, M., et al , (2013), A meta-analysis of health status, health behaviors, and health care utilization outcomes of the chronic disease self-management program, Preventing Chronic Disease, 10, p1-14. [https://doi.org/10.5888/pcd10.120112]
• Caplin, D. L., & Creer, T. L., (2001), A self-management program for adult asthma. III. Maintenance and relapse of skills, Journal of Asthma, 38, p343-356. [https://doi.org/10.1081/jas-100000263]
• D'Souza, W. J., Slater, T., Fox, C., Fox, B., TeKaru, H., Gemmell, T., et al , (2000), Asthma morbidity 6 yrs after an effective asthma self-management programme in a Maori community, European Respiratory Journal, 15, p464-469. [https://doi.org/10.1034/j.1399-3003.2000.15.07.x]
• 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, p174-182.
• Green, L. W., (1977), Evaluation and measurement: Some dilemmas for health education, American Journal of Public Health, 67, p155-161. [https://doi.org/10.2105/ajph.67.2.155]
• Kim, S. H., & Youn, C. H., (2015), Efficacy of chronic disease self-management program in older Korean adults with low and high health literacy, Asian Nursing Research, 9, p42-46. [https://doi.org/10.1016/j.anr.2014.10.008]
• Leveille, S. G., Wagner, E. H., Davis, C., Grothaus, L., Wallace, J., LoGerfo, M., et al , (1998), Preventing disability and managing chronic illness in frail older adults: A randomized trial of a community-based partnership with primary care, Journal of the American Geriatrics Society, 46, p1191-1198. [https://doi.org/10.1111/j.1532-5415.1998.tb04533.x]
• Lorig, K. R., (2015), Chronic disease self-management program: insights from the eye of the storm, Frontiers in Public Health, 2, p253. [https://doi.org/10.3389/fpubh.2014.00253]
• Lorig, K. R., González, V., & Laurent, D., (1999b), The chronic disease self-management workshop leaders’ manual, (Rev. ed.), Stanford, CA, Stanford Patient Education Research Center, Stanford University.
• Lorig, K. R., Ritter, P. L., Laurent, D. D., & Fries, J. F., (2004), Long-term randomized controlled trials of tailored-print and small-group arthritis self-management interventions, Medical Care, 42, p346-354. [https://doi.org/10.1097/01.mlr.0000118709.74348.65]
• Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown, B. W. Jr., Bandura, A., et al , (2001a), Chronic disease self-management program: 2-year health status and health care utilization outcomes, Medical Care, 39, p1217-1223.
• Lorig, K. R., Sobel, D. S., Ritter, P. L., Laurent, D., & Hobbs, M., (2001b), Effect of a self-management program on patients with chronic disease, Effective Clinical Practice, 4, p256-262.
• Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W. Jr., Bandura, A., Ritter, P., et al , (1999a), Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial, Medical Care, 37, p5-14.
• Lorig, K., Holman, H., Sobel, D., Laurent, D., González, V., & Minor, M., (1993), Living a healthy life with chronic conditions, Palo Alto, Bull Publishing Company.
• Lorig, K., Lubeck, D., Kraines, R. G., Seleznick, M., & Holman, H. R., (1985), Outcomes of self-help education for patients with arthritis, Arthritis & Rheumatology, 28, p680-685. [https://doi.org/10.1002/art.1780280612]
• Lorig, K., Stewart, A., Ritter, P., Gonzalez, V., Laurent, D., & Lynch, J., (1996), Outcome measures for health education and other health care interventions, Thousand Oaks, Sage.
• Lucas, D. O., Zimmer, L. O., Paul, J. E., Jones, D., Slatko, G., Liao, W., et al , (2001), Two-Year results from the asthma self-management program: long-term impact on health care services, costs, functional status, and productivity, Journal of Asthma, 38, p321-330. [https://doi.org/10.1081/jas-100001491]
• Marlatt, A. G., & Dennis, M. D. (Eds.), (2005), Relapse prevention: Maintenance strategies in the treatment of addictive behaviors, (2nd ed.), New York, The Guilford Press.
• Morisky, D. E., Kominski, G. F., Afifi, A. A., & Kotlerman, J. B., (2009), The effects of a disease management program on self-reported health behaviors and health outcomes: Evidence from the “Florida: A Healthy State (FAHS)” Medicaid Program, Health Education & Behavior, 36, p505-517. [https://doi.org/10.1177/1090198107311279]
• Norris, S. L., Lau, J., Smith, S. J., Schmid, C. H., & Engelgau, M. M., (2002), Self-management education for adults with type 2 diabetes: A meta-analysis of the effect on glycemic control, Diabetes Care, 25, p1159-1171. [https://doi.org/10.2337/diacare.25.7.1159]
• Ory, M. G., Ahn, S., Jiang, L., Lorig, K., Ritter, P., Laurent, D. D., et al , (2013), National study of chronic disease self-management: six-month outcome findings, Journal of Aging and Health, 25, p1258-1274.
• Park, M. J., Green, J., Ishikawa, H., & Kiuchi, T., (2013), Hidden decay of impact after education for self-management of chronic illnesses: hypotheses, Chronic Illness, 9, p73-80. [https://doi.org/10.1177/1742395312453351]
• Park, M. J., Green, J., Ishikawa, H., Yamazaki, Y., Kitagawa, A., Ono, M., et al , (2013a), Decay of impact after self-management education for people with chronic illnesses: Changes in anxiety and depression over one year, PLoS ONE, 8(6), p:e65316. [https://doi.org/10.1371/journal.pone.0065316]
• Quigley, L., & Marlatt, A., (1999), Relapse prevention: maintenance of change after initial treatment, In B. S. McCrady, & E. E. Epstein (eds.), Addictions: A Comprehensive Guidebook, p370-384, New York, Oxford University Press.
• Siu, A. M., Chan, C. C., Poon, P. K., Chui, D. Y., & Chan, S. C., (2007), Evaluation of the chronic disease self-management program in a Chinese population, Patient Education and Counseling, 65, p42-50. [https://doi.org/10.1016/j.pec.2006.04.013]
• Swerissen, H., & Crisp, B. R., (2004), The sustainability of health promotion interventions for different levels of social organization, Health Promotion International, 19, p123-130. [https://doi.org/10.1093/heapro/dah113]
• Yip, Y. B., Sit, J. W., Wong, D. Y., Chong, S. Y., & Chung, L. H., (2008), A 1-year follow up an experimental study of a self-management arthritis programme with an added exercise component of clients with osteoarthritis of the knee, Psychology, Health & Medicine, 13, p402-414.
• Yukawa, K., Yamazaki, Y., Yonekura, Y., Togari, T., Abbott, F. K., Homma, M., et al , (2010), Effectiveness of chronic disease self-management program in Japan: Preliminary report of a longitudinal study, Nursing & Health Sciences, 12, p456-463. [https://doi.org/10.1111/j.1442-2018.2010.00559.x]