Tachibana T¹, Motoyama R², Otaga M³

1. Center for Public Health Informatics, National Institute of Public Health

2. NHO Shizuoka Institute of Epilepsy and Neurological Disorders, National Epilepsy Center

3. Department of Health and Welfare Services, National Institute of Public Health

^*Corresponding author:Tomoko Tachibana, MD, MPH, PhD, 2-3-6 Minami, Wako city, Saitama prefecture 351-0197, Japan, Tel:+81-48-458-6206; Fax: +81-48-469-0326;

Abstract

In recent years, in the control of chronic diseases, not only prevention but also care of patients with chronic diseases has become an issue in public health. In this study, we developed and implemented a self-management support program to enhance social life support for patients and families with various problems after stroke, and verified the effectiveness before and after the intervention by questionnaire survey. Respondents (n=25) were family (68.0%), women (64.0%), age 60.1 ± 10.6, living with spouse (72.0%), and 56.0% respondents had jobs with income. Comparison before and after the intervention by Wilcoxon’s signed rank test showed that the post-intervention group tended to show a lower value in the item BP (bodily pain) than the pre-intervention group (p=0.024). Though this program was suggested to be effective for “reducing the impact of pain on behavioral restrictions”, it was considered it will be necessary to be improved so that participants can learn how to do so by themselves.

Keywords: post stroke survivors, sequelae, disabilities, self-management support program, interventional study, social support

Purpose

In recent years, the increase in the number of chronically ill patients and the accompanying effects have become a problem worldwide, and in chronic disease control, not only prevention but also care of chronically ill patients are issues in healthcare and public health [1]. The number of elderly-onset epilepsy patients in Japan is expected to increase to 439-549,000 in 2030, [2] and countermeasures for post-stroke epilepsy, which frequently occurs in elderly patients’ stroke, are an issue. In the future, it is important to enhance measures to effectively support the community life of home care patients. Tachibana has pointed out that there is a need to promote the development of a self-management support system in a mature society Japan [3,4]. We developed and carried out a self-management support program for patients with sequelae such as symptomatic epilepsy complicated after stroke, with the aim of enhancing social life support. The purpose of this study is to verify the effectiveness of the program by assessing the physical and mental health and health-related quality of life of the course participants before and after the intervention. “Sequelae complicated after stroke” means epilepsy, depression, higher brain dysfunction, physical dysfunction, etc.

Methods

Program development and “Self-management support courses for various post-stroke issues”

Self-Management Education (SME) refers to the teaching of task-solving skills so that patients can take appropriate actions to become healthy from their own perspective [5]. In this study, we developed a prototype program based on this principle and conducted two series of “Self-management support course for post-stroke problems (hereinafter simply referred to as “course”)”. The interval between each course is two weeks, and the outline of the developed program is as shown in Table 1.

The first course was held on January 25, 2020, and the second of the series took place on February 8, 2020, both of which were held in a conference room at the TMG Asaka Medical Center (Saitama prefecture, Japan). Participants of the courses were recruited for patients of stroke and their families, by posters at both medical institutions with epilepsy centers, and NPO organizations in the nearby areas in Saitama prefecture, Japan. With a view to fostering social capital surrounding patients, [6] the course participants were set as “patients with stroke and their families”.

Table 1. Overview of the developed program. The “Self-management support course for post-stroke problems” was held twice in a series, whose interval was two weeks.　Both of the first and second courses were held in a conference room at the TMG Asaka Medical Center (Saitama prefecture, Japan.

Available at https://www.asakadai-hp.jp/ (2020-2-27)(in Japanese)).

The participants (Fax./Tel./email) were mailed with explanatory documents related to the course and the survey.　In addition, we asked for a pre-course answer to a questionnaire on health conditions and matters requiring special consideration, and requested a pledge on “protection of personal information” when participating in the course. Participants wore a nameplate with their own nickname, selected one of the four round tables prepared for each course, and sat down.　At the start of each course, a booklet describing the time allocation of the programs for the day and the challenges of group work was distributed.　 During the “exercise (stretch)” time, the upright participants stood around each round table and moved their bodies under the guidance of the participants who had dance experience. In the first course, “Home Work”, each participant set an initiative entitled “What I would like to try until the next time”, such as exercise and improvement of daily life. The second course started with an oral report on the practice of “home work” in the first course.

** This program is an original version designed and created by the authors with reference to programs already conducted in clinical settings in Japan and programs of the Japan Association for the Management of Chronic Diseases.

Objects and survey methods

The subjects of the survey are the participants of the first and second courses, who gave the consent to answer and cooperate. In the survey, self-administered questionnaires were distributed in each course and collected on the spot. The pre-intervention survey was conducted before the start of the first course, and the post-intervention survey was conducted after the completion of the second course.

Questionnaire composition and statistical analysis

The composition of the questionnaire (in the pre-intervention survey and post-intervention survey) and the scales included in the analysis are as shown in Table 2 [7-9]. The pre-intervention survey and the post-intervention survey were completed by the participants in the first course and the second course respectively. The subjects of the analysis were participants who answered both the questionnaires.

R version 3.5.0 ((The R Foundation for Statistical Computing, Vienna, Austria) was used for statistical analysis, and Wilcoxon signed rank test was performed before and after the intervention to calculate “mean ± SD” and quartiles. Considering the multiplicity of the test, the significance level was adjusted to 0.05/7=0.007 by Bonferroni adjustment.

In addition, when performing the non-parametric test, reports such as quartiles should be added to the summary value of every score in Table 4, but since this is exploratory study by small population, those have been omitted, and only “mean ± SD” has been listed.

Table 2. Composition of the Questionnaire and Scales Included in the Analysis

Ethical considerations

This study was approved by the National Institute of Public Health Sciences Research Ethics Review Board (Certificate of approval number: NIPH-IBRA # 12262).

Results

Of the 33 participants in the first course, 32 (97.0%) responded to the pre-intervention survey, and 28 (100%) among the 28 participants in the second course responded to the post-intervention survey. The subjects of the analysis are 25.

Baseline characteristics of the respondents

The baseline characteristics of the respondents (n=25) were as shown in Table 3. Families (68.0%) and women (64.0%) accounted for the majority and ages ranged from 37 to 77 years.

Table 3. Baseline Characteristics of respondents　(n=25)

The spouse was the most common (72.0%), followed by children (60.0%). 56.0% had a job with income, and the majority of respondents answered for the Satisfaction in Life as “Satisfied (neither somewhat satisfied nor Not satisfied)”.

Comparison before and after the intervention by the course program

Table 4 shows a comparison of responses (n=25) before and after the course program intervention. The values of the SF-12v2 subscale were higher than the national standard values in all scales in both the pre- and post-intervention groups. On the other hand, in the comparison before and after the intervention, the post-intervention group tended to show a lower value in the scale BP (bodily pain) than the pre-intervention group (p=0.024). The scale BP was distributed as [Min_0, Q1_75, Q2_100, Q3_100, Max_100] before the intervention, and [Min_0, Q1_25, Q2_75, Q3_100, Max_100] after the intervention. For other scales, post-intervention values compared to pre-intervention values tended to be lower in mRS, lower in self-efficacy 1, 2, and 5, and higher in GHQ12 score and PF of SF-12v2.

Table 4. Comparison before and after the intervention by the course program (n=25). Wilcoxon’s signed rank test.

Considerations

In this study group, the scale with the most significant difference before and after the program intervention was SF-12v2 BP (bodily pain). BP is a measure of the answer to the question, “Was your regular work (including housework) hindered by pain in the past week?” The higher the rank variable scale, the higher the degree that the behavior was hindered by pain. Before the intervention, stroke patients may have had thalamic pain, pain from cranial surgery, and pain from elevated intracranial pressure. Some of these pains may disappear automatically during the recovery from the acute stage, but they may worsen.

The overall pain relief effect of self-management education is reported as follows: Pain and discomfort are common problems in many chronic diseases. As the causes can be as diverse as pain from the disease itself, “muscle tension or weakness,” “lack of sleep,” “stress, anxiety, discouragement, anger, fear, dissatisfaction, etc.”, so, medication is not always the only use.[10] Therefore, it was thought that participation in the program in the self-management support course of this study for stroke may have led to “improvement of behavior restrictions due to pain” through awareness of self-management and reduction of stress. It was considered necessary to improve the program so that we could identify “types of pain” and participants could learn “how to reduce pain by themselves”.

In recent years, many studies on self-management of chronic diseases have been reported in Japan and overseas. Sato et.al. summarized and examined 15 high-evidence randomized controlled trials abroad on the self-management of stroke patients through literature reviews, while pointing out the shortage of intervention studies in Japan [11-26]. On the other hand, the symptoms and sequelae of stroke have been pointed out as one of the difficult factors of self-management, compared with the other chronic diseases, such as diabetes, mental illness, cancer, kidney disease, respiratory disease, heart disease, etc. [27]. From now on in Japan, it seems necessary to promote the developing, implementing, and evaluating self-management programs such as this study, which will not only prevent the recurrence of stroke but also improve the quality of life of patients with disabilities and illness.

Limitations of this Study

In this study it was an exploratory study for a small group, so we did not know what kind of pain the participants suffered. And, as a method for evaluating patients and families who may have memory impairment, a self-administered questionnaire survey mainly based on memory recall might not have been optimal, and further study is needed in the future.

Acknowledgments

We would like to thank Dr. Kubota Y. of Tokyo Women’s Medical University, and Dr. Tachibana H., of Matsui Hospital who cooperated in planning and implementing the program. We also thank everyone who responded to the survey. In addition, the authors acknowledge Brian Ketcham, a lecturer at Kokushikan University for making a critical reading and revision of this material previously.

Disclosure of Conflicts of Interest

This research was supported by the Taiju Life Welfare Foundation’s 52nd Medical Grant, “Study on the Development and Evaluation of a Self-Management Program to Support the Social Life of Patients with Epilepsy after Stroke”. For this study, none of the authors have a COI status to disclose.

Authorship Contribution

Lead author Dr. Tachibana oversaw the work, and worked on the idea and design of the study, planning and implementation of the program, data collection, data analysis and interpretation, writing the dissertation, and making important revisions to the dissertation. Dr. Motoyama and Dr. Otaga planned and implemented the program, collected data, and approved the final draft.

References

1. World Health Organization. Preventing a Health Care Workforce for the 21st Century: The Challenge of Chronic Conditions.2005. https://apps.who.int/iris/bitstream/handle/10665/43044/9241562803.pdf?sequence=1

2. Shigeto H. ⅠEarly-onset epilepsy. Epidemiological issues. The Japanese Society of Neurotherapy Therapeutic Guidelines Development Committee. Standard neurotherapy: Early-onset epilepsy. Neurother. 2012; 26 (4): 463-465.

3. Tachibana T. How can we realize the health promotion measures for all the people in a mature society, Japan? -Proposing for “collaboration between academy and practice” in Japanese public health by Self-management Education, especially Chronic Disease Self-Management Program. Health Educ Public Health. 2019; 2(5): 234-237.doi:10.31488 /heph.131. (in press)

4. Tachibana T. A Suggestion to Promote Public Health Activities in the Mature Society of Japan. For Establishment of a Self-Management Support System. Health Educ Public Health. 2019; 2(5): 238-242. doi:10.31488/heph.132. (in press)

5. Bodenheimer T, Lorig K, Holman H, et al. Patient self-management of chronic disease in primary care. J Am Med Assoc. 2002; 288(19): 2469-2475.

6. Economic and Social Research Institute, Cabinet Office. Research report on community function regeneration and social capital. 2005. http://www.esri.go.jp/jp/prj/hou/hou015/hou015.html

7. Buysse D, Barzansky B, Dinges D, et.al. Sleep, fatigue, and medical training: setting an agenda for optimal learning and patient care. Sleep. 2003; 26: 218-225.

8. Fukuhara S, Suzukamo Y. SF-36v2 Japanese manual: Kyoto: Hope International, 2004.2015. (In Japanese)

9. van Swieten JC, Koudstaal PF, Visser MC, et al. Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 1988; 19:604-607.

10. Lorig K. Living a healthy life with chronic conditions : self-management of heart disease, arthritis, diabetes, asthma, bronchitis, emphysema and others. Bull Pub Co., c2006.3rd ed.

11. Sato M, Hara S, Fukuma M, et.al. A Review of the Literature from Japan and Other Countries on Self-Management in Patients with Stroke. J Jpn Soc Nurs Res. 2019: 42(4): 803-818.

12. Collo BS, Krishnamurthi R, Witt E, et al. Improving Adherence to Sec-ondary Stroke Prevention Strategies Through Motivational Inter-viewing: Randomized Controlled Trial. Stroke. 2015; 46（12): 3451-3458.

13. Cadilhac DA, Hoffmann S, Kilkenny M, et al. A phase II multi-centered, single-blind, randomized, controlled trial of the stroke self-management program. Stroke. 2011; 42(6) : 1673-1679.

14. Cadilhac DA, Kilkenny MF, Srikanth V, et al. Do cognitive, language, or physical impairments affect participation in a trial of self-man-agement programs for stroke? Int J Stroke. 2016; 11(1): 77-84.

15. Wolf TJ, Baum CM, Lee D. et al. The Develop-ment of the Improving Participation after Stroke Self-Management Program （IPASS）: An Exploratory Randomized Clinical Study. Topics in Stroke Rehab. 2017; 23 (4): 284-292.

16. McKenna S, Jones F, Glenfield P, et al. Bridges self-management program for people with stroke in the community: A feasibility randomized controlled trial. Int J Stroke. 2015; 10 (5): 697-704.

17. Jones FP, Pöstges H, Brimicombe L. Building Bridges between healthcare professionals, patients and families: A copro-duced and integrated approach to self-management support in stroke. Neuro Rehab. 2016; 39 (4): 471-480.

18. Marsden D, Quinn R, Pond N, et al. A multidisciplinary group programme in rural settings for community-dwelling chronic stroke survivors and their carers: A pilot randomized controlled trial. Clinical Rehab. 2010; 24(4): 328-341.

19. Tielemans NS, Visser-Meily JM, Schepers VP, et al. Effectiveness of the Restore4Stroke self-management intervention “Plan ahead!”: A randomized controlled trial in stroke patients and partners. J Rehabil Med. 2015; 47(10): 901-909.

20. Lo SHS, Chang AM, Chau JPC. Stroke Self-Man-agement Support Improves Survivors’ Self-Efficacy and Outcome Expectation of Self-Management Behaviors. Stroke. 2018; 49(3): 758-760.

21. Wolf TJ, Spiers MJ, Doherty M, et al. The effect of self-management education following mild stroke: An exploratory randomized controlled trial. Top Stroke Rehabil. 2017; 24(5): 345-352.

22. Kendall E, Catalano T, Kuipers P, et al. Recovery following stroke: The role of self-management education. Social Science of Medication. 2007; 64(3): 735-746.

23. Sit JW, Chair SY, Chan Yip CW, et al. Effect of health empowerment intervention for stroke self-management on behaviour and health in stroke rehabilitation patients. Hong Kong Med J. 2018; 2(1): 12-15.

24. Sit JW, Chair SY, Choi KC, et al. Do empowered stroke patients perform better at self-management and functional recovery after a stroke? A randomized controlled trial. Clin Intervention Again. 2016; 11: 1441-1450.

25. Kronish IM, Goldfinger JZ, Negron R, et al. Effect of peer education on stroke prevention: The prevent recurrence of all inner-city strokes through education randomized controlled trial. Stroke. 2014; 45(11): 3330-3336.

26. Golding K, Kneebone I, Fife-Schaw C. Self-help relax-Clinical Rehab. 2015; 30(2): 174-180.

27. Masahiro K, Kazumi Y, Fumiko O. Difficulties in Self-Management of Stroke Patients: Examination from Narratives of Certified Nurses with Stroke Rehabilitation. Human Nursing Studies. 2015; 13: 9-20.

Received: January 14, 2019;
Accepted: February 19, 2019;
Published: February 24, 2019;

To cite this article : Tachibana T, Motoyama R, Otaga M. A Study on Development and Short-term Evaluation of a Self-Management Support Program for Post Stroke Survivors and Families.Health Education and Public Health. 2020: 3:1.

© Tachibana T, et al. 2020.