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Systematic framework to evaluate the status of physical activity research for persons with multiple sclerosis
Disability and Health Journal 7 (2014) 151e156 www.disabilityandhealthjnl.com
Review Article
Systematic framework to evaluate the status of physical activity research for persons with multiple sclerosis Alicia Dixon-Ibarra, M.S.a,*, Kerri Vanderbom, Ph.D.b, Anisia Dugala, B.S.a, and Simon Driver, Ph.D.a a
School of Biological and Population Health, College of Public Health and Human Sciences, Oregon State University, 123 Women’s 1 Building, Corvallis 97331, USA b University of Alabama Birmingham/Lakeshore Research Collaborative, 4000 Ridegway Dr, Birmingham 35209, USA
Abstract Background: Exploring the current state of health behavior research for individuals with multiple sclerosis is essential to understanding the next steps required to reducing preventable disability. A way to link research to translational health promotion programs is by utilizing the Behavioral Epidemiological Framework, which describes a sequence of phases used to categorize health-related behavioral research. Objective: This critical audit of the literature examines the current state of physical activity research for persons with multiple sclerosis by utilizing the proposed Behavioral Epidemiological Framework. Methods: After searching MEDLINE, PUBMED, PsycINFO, Google Scholar and several major areas within EBSCOHOST (2000 to present), retrieved articles were categorized according to the framework phases and coding rules. Results: Of 139 articles, 49% were in phase 1 (establishing links between behavior and health), 18% phase 2 (developing methods for measuring behavior), 24% phase 3 (identifying factors influencing behavior and implications for theory), and 9% phase 4 and 5 (evaluating interventions to change behavior and translating research into practice). Conclusions: Emphasis on phase 1 research indicates the field is in its early stages of development. Providing those with multiple sclerosis with necessary tools through health promotion programs is needed to reduce secondary conditions and co-morbidities. Reassessment of the field of physical activity and multiple sclerosis in the future could provide insight into whether the field is evolving over time or remaining stagnant. Published by Elsevier Inc. Keywords: Physical activity; Multiple sclerosis; Health promotion; Behavioral theories; Dissemination and implementation
Multiple sclerosis is an auto-immune system disease that is estimated to affect 1 in 1000 people in the US or an estimated 400,000 people.1 Consequently, there are a wide variety of associated (e.g., fatigue, balance issues, spasticity) and secondary conditions (e.g., depression, cardiovascular disease, etc) linked to multiple sclerosis. Furthermore, health professionals are challenged to find ways to help individuals delay the onset of disability, manage disease symptoms, and promote healthy behaviors to reduce secondary conditions.2,3 One healthy behavior is physical activity, which is considered a leading indicator of health and is associated with reduced morbidity and mortality.4 Physical activity has documented general and unique Conflict of interest: The authors have no conflicts of interest to declare. This manuscript has not been submitted to another journal. The results of this review were presented at the 2012 North American Federation of Adapted Physical Activity Symposium on October 12, 2012 in Birmingham, Alabama, USA. * Corresponding author. Tel.: þ1 814 934 0757. E-mail address: [email protected] (A. Dixon-Ibarra). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.10.004
benefits for individuals with multiple sclerosis specifically through symptom management on the effects on fatigue, spasticity, mobility, depression, and pain.5 Despite the benefits of physical activity, those with multiple sclerosis are significantly less active compared to the general population and have higher amounts of sedentary activity.6 Thus, it is critical that researchers are able to identify the links between physical activity and health for this population, as well as determine effective ways to increase physical activity for those with multiple sclerosis. Understanding the current status of physical activity and multiple sclerosis research is needed to identify gaps in the literature that warrant additional focus. One way to understand the area of physical activity for those with multiple sclerosis is through reviewing the current literature. The Behavioral Epidemiology Framework provides a way to categorize health related behavior (e.g., physical activity for those with multiple sclerosis) within a sequence of five research phases.7 The intentions of the framework are to establish a sequential way to describe the current status
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of health-related behavior research and provide evidence needed for health researchers, clinicians, and policymakers to take action to improve population health. The framework consists of five phases to categorize health-related research. Phase 1 includes research that establishes the links between behavior (e.g., physical activity) and health. These are basic epidemiological studies demonstrating an association between behaviors and health. Typically, these studies provide causal evidence of a doseeresponse relationship between behaviors and health outcomes. Phase 2 includes research related to the development of methods for measuring behavior. Articles in phase 2 provide evidence of validity and reliability of behavior measures. Phase 3 studies explore the factors (i.e., direct correlates, moderators, mediators, effect modifiers) that influence behavior. The first purpose of phase 3 research is to describe demographic correlates of behavior. The second purpose is to test hypotheses surrounding determinants of behavior (i.e., theory testing). Phase 4 evaluates interventions that aim to change behavior or change specific determinants of behavior. Knowledge from phases 1, 2, and 3 are used to develop and assess interventions in this phase. When interventions are effective in phase 4, their integration into communities and populations of interest is the next step in the framework. Phase 5 studies include translating research into practice where the primary role is to disseminate effective interventions from phase 4. Studies in phase 5 could evaluate the extent that policies and/or interventions are implemented and managed.7 According to Grant and Booth (2009)’s typology of reviews, the Behavioral Epidemiological Framework is a scoping review because the process provides a preliminary assessment of the available published research in the area of physical activity and multiple sclerosis.8 The utility of this type of review is to inform future research efforts and policymakers whether a full systematic review is needed.8 Moreover, the framework is descriptive in nature and provides information about the level of maturity of a field (revealed by examining the distribution of latterphase studies). It also indicates areas of strengths and weaknesses (represented by the percentage of studies in each phase) and can change priorities in the field to foster change and progress (by addressing phases that are underrepresented).9 The phases in the framework are typically sequential in that they build upon previous phases; however, the framework can also be used to improve earlier stage research.7 For instance, if a valid and reliable tool to assess physical activity is developed, researchers may consider conducting an additional phase 1 study to determine if physical activity is influencing health outcomes based on the new assessment. The sequential aspects of the framework tend to be clearer. An example would be using phase 3 research to determine the significant contributors to physical activity that can be targeted in phase 4 interventions. The purpose of this study is to utilize the Behavioral Epidemiological Framework to examine the current state
of physical activity research for persons with multiple sclerosis. The research questions explored in this review include: a) what is the current state of physical activity research for persons with multiple sclerosis? b) What phases of physical activity research need further inquiry? Methods A literature review was conducted searching MEDLINE, PUBMED, PsycINFO, Google Scholar and several major areas within EBSCOHOST including General, Counseling, Education, Health Science, Psychology, Sociology, and Social Sciences from 2000 to 2012 using key words ‘physical activity,’ ‘health promotion,’ ‘exercise’ and ‘physical fitness’ in addition to ‘multiple sclerosis.’ We conducted a further manual search of the bibliographies of retrieved articles. Studies were included in the review if they assessed physical activity or contributed to physical activity research for those with multiple sclerosis, as it relates to the five phases of the framework. Both quantitative and qualitative studies, reviews, metaanalyses and papers addressing physical activity behavior for persons with multiple sclerosis were classified to one of the five phases based on the Sallis et al (2000) criteria. The following coding rules were utilized: a) editorials without extensive references were not coded, b) highest phase was coded for papers using multiple categories, c) if physical activity measurement was conducted in the research phase 2 was coded, d) papers with measurement of determinants of physical activity were coded phase 3, and e) measurement of factors related to dissemination was coded phase 5.7 The research team was extensively trained on the framework phases. Training included a presentation on the Sallis et al (2000) article, open-ended discussions, and practice categorizing physical activity research for persons with multiple sclerosis prior to final coding. Out of the initial pool of 139 articles, 50 randomly selected studies were used for a reliability estimate among the three coders. The coders were required to achieve 80% or higher reliability on classifying the phases of the framework prior to coding the remaining studies. The rest of the retrieved articles were dispersed across team members for independent classification. If the research team was unsure of a classification, the coding was resolved with consensus of the group. The percentages of articles categorized in each of the five phases were computed.
Results Using the keywords in the various search engines, 1307 articles were initially identified in MEDLINE (PUBMED), 3462 in EBSCOhost, 866 in PsycINFO, and over 80,000 articles in Google Scholar. Duplicate articles, across the search engines, were identified with the use of an online
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reference program. After conducting the audit of the literature, a total of 139 articles were identified that fit the epidemiological framework criteria and were categorized into one of the five phases. Of the 139 articles, 49% of the articles were in phase 1 (n 5 68), 18% phase 2 (n 5 25), 24% phase 3 (n 5 33), 9% phase 4 (n 5 13), and 0% phase 5 (n 5 0). Fig. 1 displays the percentages of the articles categorized in the five phases. Overall, the majority of the research related to physical activity and multiple sclerosis was coded as phase 1 research. Another phase that was more represented than the others was phase 3, determining the correlates to physical activity behavior. Phases 4 and 5 were the lowest areas of inquiry with no articles in phase 5. Discussion This critical audit of the literature analyzed articles related to physical activity and multiple sclerosis published since 2000 in an effort to categorize papers according to the Behavioral Epidemiological Framework. In the area of physical activity for persons with multiple sclerosis, there is an emphasis on phase 1 research including the link between physical activity and health outcomes (i.e., fatigue, biological response to exercise, gait/mobility, balance, quality of life, depression, pain, cognition, disease progression, coronary heart disease risk, etc). According to the framework, this indicates the current state of research in this field is in its early stages of development/maturity.7 This finding is not surprising, as this area of inquiry has changed over the past few decades. Historically, physical activity has been a controversial topic for individuals with multiple sclerosis, since it was thought to increase fatigue and reduce the ability to perform activities of daily living.10 Specifically, the Uhthoff phenomenon, which is the worsening of symptoms due to elevation in body temperature, was a contributing rationale for the recommendation to avoid physical activity.11 However, as with any sedentary population, limited movement can lead to higher rates of chronic conditions (i.e., obesity, heart disease, diabetes, etc) and result in greater muscular
Fig. 1. Percentage of physical activity articles for those with multiple sclerosis by behavioral epidemiology research phase.
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weakness, fatigues, and deconditioning. To avoid secondary conditions, the research focus in the past decade shifted to examine the known benefits of physical activity on health and particularly the unique benefits of physical activity for persons with multiple sclerosis. Current research has started to consider the appropriate dose or intensity of physical activity to optimize benefits for this population,10,12 while also debunking the previous assumption that physical activity increases the risk of multiple sclerosis progression.13 Research in the past decade has shown that not only does physical activity help to decrease secondary conditions, but it also has other benefits unique for persons with multiple sclerosis. These benefits include symptom management of the effects on fatigue, spasticity, mobility, depression, and pain.5,14e16 Despite the fact that the majority of research was categorized into Phase 1 (49%), conducting phase 1 studies are an important aspect of research for this population as the biological plausibility of how physical activity benefits persons with multiple sclerosis is still relatively unclear. The overall consensus is that physical activity is not harmful and well tolerated, when performed at the appropriate intensity to meet the needs of the individual, and is needed to prevent disuse and secondary conditions for persons with multiple sclerosis.10,14 With the known links between physical activity and positive health outcomes, the use of phase 2 studies to assess physical activity for persons with multiple sclerosis is essential for all stages of the epidemiological framework. For those with multiple sclerosis, the most common physical activity tools have been self-report questionnaires/diaries, pedometers, and accelerometers. Out of the 25 articles in phase 2 research 64% (n 5 16) discussed accelerometer psychometric properties, 56% (n 5 14) subjective self-reported questionnaires/physical activity diaries, and 32% (n 5 8) discussed pedometer validity and reliability. Some of the articles evaluated multiple assessment tools, thus the percentages described above will not equal 100%. In order to plan for effective interventions, phase 3 studies help identify determinants of behavior and implications for theory to focus interventions. From the retrieved studies, the most widely used theory for physical activity and multiple sclerosis is the social cognitive theory and its constructs.17e27 The core determinants that drive the social cognitive theory are knowledge, self-efficacy, outcome expectations, perceived barriers and facilitators, and goal setting.28 Based on phase 3 research, understanding the social cognitive theory components and their relationships with physical activity can help researchers identify focus areas for health promotion programs specifically for persons with multiple sclerosis. Additional theories discussed were the transtheoretical model,3 health belief model,26 Pender model of health promotion,26 transactional model of stress and coping,18 theory of planned behavior,17 self-determination theory,29 physical activity for people with a disability (PAD) model,30 disablement process model,31 phenomenology,32,33 social learning and expectancy-value theory.20
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In conjunction with theoretical underpinnings, phase 3 research also examines determinants of behavior. The following are some of the demographic variables influencing physical activity behaviors discussed in the coded articles: type of multiple sclerosis,19,34,35 age,34,35 severity of disability,5,30 functional limitations,19,27 use of a cane for ambulation,34 severity of multiple sclerosis symptoms,18,33 fatigue,18,20,36 anxiety and depression,35,36 level of cognition,36 family to care for,18,30 and receiving a disability pension.30 Some of the environmental determinants in phase 3 research included: walkability to shops and stores,37 low cost recreational facilities,36,37 social environment (i.e., social support),18 weather,18 and accessible gym facilities.18 Phase 4 and 5 intervention research to improve physical activity behavior in this population was scarce. Many physical activity interventions developed for those with multiple sclerosis have been to demonstrate the benefits of physical activity on health outcomes, which were categorized in phase 1. The essence of phase 4 and 5 research is to utilize established research in the previous phases to increase behavior (i.e., physical activity). The following intervention approaches were utilized in phase 4 research to increase physical activity for this population: internet-based health promotion,38 telephone counseling,39 randomized control trials of structured exercise regimens,11,40e42 health education,43,44 and group wellness interventions.26,45 The research team did not find any phase 5 research that specifically examined the diffusion, dissemination, implementation, and/or sustainability of physical activity interventions/programs within different settings from the original effectiveness trial. Although the framework states that the lack of published research in Phase 4 and 5 portrays a lack of maturity in the field, we also want to recognize that the lack of these studies may also reflect the fact that limited funding is available to conduct intervention studies. It is less expensive to perform secondary analysis on pre-existing data or assess determinants of a behavior through survey methodology than it is to conduct randomized control trials. Therefore, some of the differences in the percentage of studies could be a result of a lack of funding to conduct these studies and not the lack of maturity or efforts of health promotion researchers. The major conclusion of our analysis is the need to produce more translational health promotion programs for those with multiple sclerosis. Creating translational programs is consistent with federal initiatives by the Surgeon General and Healthy People 2020 to improve the health of Americans with disabilities.46,47 Despite the push for translational programs, funding may be difficult to obtain. Thus, it is essential that funding agencies acknowledge the need for health promotion programs for those with multiple sclerosis. Once funding and clear evidence from Phase 1e3 research is available, researchers can begin to effectively develop health promotion programs for those with multiple sclerosis. The use of established health promotion guidelines for designing and
implementing programs in the disability community could provide additional guidance in program development. Experts in disability, public health, and other related fields established guidelines for conducting and implementing health promotion programs for those with disabilities. The following guidelines were determined key for an effective health promotion intervention/program: 1) including an underlying theoretical framework, 2) implementing process evaluation, 3) using disability-appropriate outcome measures, 4) including all stakeholders in the development and implementation of the program, 5) considering the beliefs, practices, and values of the targeted group, 6) making the program socially, behaviorally, programmatically, and environmentally accessible to participants, and 7) creating an affordable program. These guidelines are strongly encouraged to use as the best available set of practices for implementing health promotion programs for those with disabilities.48 The use of these guidelines could help physical activity researchers develop effective translational programs for those with multiple sclerosis, and move the field forward into phases 4 and 5. Furthermore, beyond the scope of our analysis but emphasized in a review from Rimmer et al (2010), there are specific areas of improvement for physical activity intervention studies that should be addressed in future multiple sclerosis research. As discussed in the Rimmer et al review, disability interventions often lack evidence-based rigor with few randomized control trials and insufficient follow-up assessments examining long term effects of interventions.49 Furthermore, less than half of the physical activity interventions examined in the review (i.e., 32 out of 80 interventions) were randomized control trials. In spite of the known difficulties in obtaining a sufficient sample size and randomizing disability populations for randomized control trials, more attempts to develop physical activity interventions of evidence-based rigor would strengthen the field of multiple sclerosis research and clearly demonstrate the positive effects of physical activity on health. Moreover, the framework utilized in this literature review to describe the state of physical activity research for those with multiple sclerosis is not without limitations. First, our study only captures physical activity research following 2000. Thus, we cannot comment on the physical activity research prior to 2000 and the potential change of research focus over time. In addition, we cannot guarantee that we did not miss articles not published within the designated search engines specified in the methods. The lack of Phase 5 research may be in part due to the traditional search methods used, potentially limiting the representativeness of the articles. For instance, practitioners, within the community, who use interventions developed in Phase 4 may not write them up in a peer reviewed journal; instead the findings may appear in technical reports, which were not reviewed. In addition, if studies did not identify that they were using an intervention reported in a Phase 4, it might not have been identified as Phase 5 in this audit.
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By the nature of a scoping review, we aimed to identify the extent of research evidence in the area, without additional inquiry regarding the intrinsic quality of the reviewed articles.8 Thus, we recognize that there are limitations in the rigor of this type of review. In particular, the framework described the types of studies published; however, the studies were not assessed based on methodological, theoretical, or conceptual quality or innovation.7,8 As Sallis et al suggest, the Behavioral Epidemiological Framework in combination with formal methodological guidelines for evidence-based studies could provide more informative evaluation of the field. Despite the limitations, the use of the behavioral epidemiological framework to classify physical activity research provides critical insight to the state of physical activity research for those with multiple sclerosis. This study will hopefully encourage researchers to fill in the gaps within the framework to ultimately improve health behavior research for those with multiple sclerosis. Our systematic review demonstrates that the current state of physical activity research for persons with multiple sclerosis is still in its infancy due to the low percentage of articles in phases 4 and 5. This evidence should begin to stimulate discussions surrounding behavior change interventions to improve the health and wellness for those with multiple sclerosis and how to fund the development of these interventions.
Conclusion Based on the results of the scoping review, the Behavioral Epidemiological Framework provides the first steps in classifying disability and health behavioral research. This evaluation of physical activity studies for persons with multiple sclerosis highlighted areas of strength and areas for future research. With this information, researchers can design studies specifically targeting these areas of need, allowing the field to grow and progress. The review shows a lack of research in phases 4 and 5, suggesting the need to expand on behavior change interventions. Although the creation and implementation of these programs are important for improving health, the other phases of research are also critical. Since physical activity for individuals with multiple sclerosis is a growing field, a reassessment of the available research in the future could give insight into whether the field is progressing forward or maintaining current research trends. We would further recommend a systematic review to evaluate the internal quality of the articles included in this study. References 1. Mayr W, Pittock S, McClelland R, Jorgensen N, Noseworthy J, Rodriguez M. Incidence and prevalence of multiple sclerosis in Olmsted County, Minnesota, 1985e2000. Neurology. 2003;61(10): 1373e1377.
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24. Kasser S. Exercising with multiple sclerosis: insights into meaning and motivation. Adapt Phys Activ Q. 2009;26(3):274. 25. McAuley E, White SM, Rogers LQ, Motl RW, Courneya KS. Physical activity and fatigue in breast cancer and multiple sclerosis: psychosocial mechanisms. Psychosom Med. 2010;72(1):88e96. 26. Stuifbergen AK, Becker H, Blozis S, Timmerman G, Kullberg V. A randomized clinical trial of a wellness intervention for women with multiple sclerosis. Arch Phys Med Rehabil. 2003;84:467e476. 27. Dlugonski D, W ojcicki TR, McAuley E, Motl RW. Social cognitive correlates of physical activity in inactive adults with multiple sclerosis. Int J Rehabil Res. 2011;34(2):115. 28. Bandura A. Social Foundations of Thought and Action: A Social Cognitive Theory. Englewood Cliffs, NJ: Prentice-Hall; 1986. 29. Gay JL, Saunders RP, Dowda M. The relationship of physical activity and the built environment within the context of self-determination theory. Ann Behav Med; 2011:1e9. 30. Beckerman H, de Groot V, Scholten MA, Kempen JCE, Lankhorst GJ. Physical activity behavior of people with multiple sclerosis: understanding how they can become more physically active. Phys Ther. 2010;90(7):1001e1013. 31. Stuifbergen AK, Blozis SA, Harrison TC, Becker HA. Exercise, functional limitations, and quality of life: a longitudinal study of persons with multiple sclerosis. Arch Phys Med Rehabil. 2006;87(7):935e943. 32. Schneider M, Young N. ‘‘So this is my new life’’: a qualitative examination of women living with multiple sclerosis and the coping strategies they use when accessing physical activity. Disabil Stud Q. 2010;30(3/4). 33. Borkoles E, Nicholls AR, Bell K, Butterly R, Polman RCJ. The lived experiences of people diagnosed with multiple sclerosis in relation to exercise. Psychol Health. 2008;23(4):427e441. 34. Motl RW, Snook EM, McAuley E, Scott JA, Hinkle ML. Demographic correlates of physical activity in individuals with multiple sclerosis. Disabil Rehabil. 2007;29(16):1301e1304. 35. Rietberg MB, van Wegen EEH, Uitdehaag BMJ, Kwakkel G. The association between perceived fatigue and actual level of physical activity in multiple sclerosis. Mult Scler J. 2011;17(10):1231e1237. 36. Vanner EA, Block P, Christodoulou CC, Horowitz BP, Krupp LB. Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis. Disabil Health J. 2008;1(1):58e65. 37. Doerksen SE, Motl RW, McAuley E. Environmental correlates of physical activity in multiple sclerosis: a cross-sectional study. Int J Behav Nutr Phys Act. 2007;4(1):49.
38. Dlugonski D, Motl RW, McAuley E. Increasing physical activity in multiple sclerosis: replicating internet intervention effects using objective and self-report outcomes. J Rehabil Res Dev. 2011;48: 1129e1136. 39. Bombardier CH, Cunniffe M, Wadhwani R, Gibbons LE, Blake KD, Kraft GH. The efficacy of telephone counseling for health promotion in people with multiple sclerosis: a randomized controlled trial. Arch Phys Med Rehabil. 2008;89(10):1849e1856. 40. Khan F, Pallant JF, Brand C, Kilpatrick TJ. Effectiveness of rehabilitation intervention in persons with multiple sclerosis: a randomised controlled trial. J Neurol Neurosurg Psychiatry. 2008;79(11): 1230e1235. 41. Charlton M, Gabriel K, Munsinger T, Schmaderer L, Healey K. Program evaluation results of a structured group exercise program in individuals with multiple sclerosis. Int J MS Care. 2010;12: 92e96. 42. Romberg A, Virtanen A, Ruutiainen J, et al. Effects of a 6-month exercise program on patients with multiple sclerosis: A randomized study. Neurology. 2004;63:2034e2038. 43. Ennis M, Thain J, Boggild M, Baker GA, Young CA. A randomized controlled trial of a health promotion education programme for people with multiple sclerosis. Clin Rehabil. 2006 09;20(9): 783e792. 44. McAuley E, Motl R, Morris K, et al. Enhancing physical activity adherence and well-being in multiple sclerosis: a randomised controlled trial. Mult Scler. 2007;13(5):652e659. 45. Plow MA, Mathiowetz V, Lowe DA. Comparing individualized rehabilitation to a group wellness intervention for persons with multiple sclerosis. Am J Health Promot. 2009;24(1):23e26. 46. U.S. Department of Health and Human Services. Healthy People 2020. Available at: http://www.healthypeople.gov/2020/TopicsObjectives20 20/pdfs/HP2020_brochure_with_LHI_508.pdf; 2010. Accessed 22.05.12. 47. U.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons With Disabilities. Available at: http://www.surgeongeneral.gov/ library/calls/disabilities/index.html; 2005. Accessed 22.05.12. 48. Drum CE, Peterson JJ, Culley C, et al. Guidelines and criteria for the implementations of community-based health promotion programs for individuals with disabilities. Am J Health Promot. 2009;24(2): 93e101. 49. Rimmer JH, Chen MD, McCubbin JA, Drum C, Peterson J. Exercise intervention research on persons with disabilities. Am J Phys Med Rehabil. 2010;89:249e263.
Review Article
Systematic framework to evaluate the status of physical activity research for persons with multiple sclerosis Alicia Dixon-Ibarra, M.S.a,*, Kerri Vanderbom, Ph.D.b, Anisia Dugala, B.S.a, and Simon Driver, Ph.D.a a
School of Biological and Population Health, College of Public Health and Human Sciences, Oregon State University, 123 Women’s 1 Building, Corvallis 97331, USA b University of Alabama Birmingham/Lakeshore Research Collaborative, 4000 Ridegway Dr, Birmingham 35209, USA
Abstract Background: Exploring the current state of health behavior research for individuals with multiple sclerosis is essential to understanding the next steps required to reducing preventable disability. A way to link research to translational health promotion programs is by utilizing the Behavioral Epidemiological Framework, which describes a sequence of phases used to categorize health-related behavioral research. Objective: This critical audit of the literature examines the current state of physical activity research for persons with multiple sclerosis by utilizing the proposed Behavioral Epidemiological Framework. Methods: After searching MEDLINE, PUBMED, PsycINFO, Google Scholar and several major areas within EBSCOHOST (2000 to present), retrieved articles were categorized according to the framework phases and coding rules. Results: Of 139 articles, 49% were in phase 1 (establishing links between behavior and health), 18% phase 2 (developing methods for measuring behavior), 24% phase 3 (identifying factors influencing behavior and implications for theory), and 9% phase 4 and 5 (evaluating interventions to change behavior and translating research into practice). Conclusions: Emphasis on phase 1 research indicates the field is in its early stages of development. Providing those with multiple sclerosis with necessary tools through health promotion programs is needed to reduce secondary conditions and co-morbidities. Reassessment of the field of physical activity and multiple sclerosis in the future could provide insight into whether the field is evolving over time or remaining stagnant. Published by Elsevier Inc. Keywords: Physical activity; Multiple sclerosis; Health promotion; Behavioral theories; Dissemination and implementation
Multiple sclerosis is an auto-immune system disease that is estimated to affect 1 in 1000 people in the US or an estimated 400,000 people.1 Consequently, there are a wide variety of associated (e.g., fatigue, balance issues, spasticity) and secondary conditions (e.g., depression, cardiovascular disease, etc) linked to multiple sclerosis. Furthermore, health professionals are challenged to find ways to help individuals delay the onset of disability, manage disease symptoms, and promote healthy behaviors to reduce secondary conditions.2,3 One healthy behavior is physical activity, which is considered a leading indicator of health and is associated with reduced morbidity and mortality.4 Physical activity has documented general and unique Conflict of interest: The authors have no conflicts of interest to declare. This manuscript has not been submitted to another journal. The results of this review were presented at the 2012 North American Federation of Adapted Physical Activity Symposium on October 12, 2012 in Birmingham, Alabama, USA. * Corresponding author. Tel.: þ1 814 934 0757. E-mail address: [email protected] (A. Dixon-Ibarra). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.10.004
benefits for individuals with multiple sclerosis specifically through symptom management on the effects on fatigue, spasticity, mobility, depression, and pain.5 Despite the benefits of physical activity, those with multiple sclerosis are significantly less active compared to the general population and have higher amounts of sedentary activity.6 Thus, it is critical that researchers are able to identify the links between physical activity and health for this population, as well as determine effective ways to increase physical activity for those with multiple sclerosis. Understanding the current status of physical activity and multiple sclerosis research is needed to identify gaps in the literature that warrant additional focus. One way to understand the area of physical activity for those with multiple sclerosis is through reviewing the current literature. The Behavioral Epidemiology Framework provides a way to categorize health related behavior (e.g., physical activity for those with multiple sclerosis) within a sequence of five research phases.7 The intentions of the framework are to establish a sequential way to describe the current status
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of health-related behavior research and provide evidence needed for health researchers, clinicians, and policymakers to take action to improve population health. The framework consists of five phases to categorize health-related research. Phase 1 includes research that establishes the links between behavior (e.g., physical activity) and health. These are basic epidemiological studies demonstrating an association between behaviors and health. Typically, these studies provide causal evidence of a doseeresponse relationship between behaviors and health outcomes. Phase 2 includes research related to the development of methods for measuring behavior. Articles in phase 2 provide evidence of validity and reliability of behavior measures. Phase 3 studies explore the factors (i.e., direct correlates, moderators, mediators, effect modifiers) that influence behavior. The first purpose of phase 3 research is to describe demographic correlates of behavior. The second purpose is to test hypotheses surrounding determinants of behavior (i.e., theory testing). Phase 4 evaluates interventions that aim to change behavior or change specific determinants of behavior. Knowledge from phases 1, 2, and 3 are used to develop and assess interventions in this phase. When interventions are effective in phase 4, their integration into communities and populations of interest is the next step in the framework. Phase 5 studies include translating research into practice where the primary role is to disseminate effective interventions from phase 4. Studies in phase 5 could evaluate the extent that policies and/or interventions are implemented and managed.7 According to Grant and Booth (2009)’s typology of reviews, the Behavioral Epidemiological Framework is a scoping review because the process provides a preliminary assessment of the available published research in the area of physical activity and multiple sclerosis.8 The utility of this type of review is to inform future research efforts and policymakers whether a full systematic review is needed.8 Moreover, the framework is descriptive in nature and provides information about the level of maturity of a field (revealed by examining the distribution of latterphase studies). It also indicates areas of strengths and weaknesses (represented by the percentage of studies in each phase) and can change priorities in the field to foster change and progress (by addressing phases that are underrepresented).9 The phases in the framework are typically sequential in that they build upon previous phases; however, the framework can also be used to improve earlier stage research.7 For instance, if a valid and reliable tool to assess physical activity is developed, researchers may consider conducting an additional phase 1 study to determine if physical activity is influencing health outcomes based on the new assessment. The sequential aspects of the framework tend to be clearer. An example would be using phase 3 research to determine the significant contributors to physical activity that can be targeted in phase 4 interventions. The purpose of this study is to utilize the Behavioral Epidemiological Framework to examine the current state
of physical activity research for persons with multiple sclerosis. The research questions explored in this review include: a) what is the current state of physical activity research for persons with multiple sclerosis? b) What phases of physical activity research need further inquiry? Methods A literature review was conducted searching MEDLINE, PUBMED, PsycINFO, Google Scholar and several major areas within EBSCOHOST including General, Counseling, Education, Health Science, Psychology, Sociology, and Social Sciences from 2000 to 2012 using key words ‘physical activity,’ ‘health promotion,’ ‘exercise’ and ‘physical fitness’ in addition to ‘multiple sclerosis.’ We conducted a further manual search of the bibliographies of retrieved articles. Studies were included in the review if they assessed physical activity or contributed to physical activity research for those with multiple sclerosis, as it relates to the five phases of the framework. Both quantitative and qualitative studies, reviews, metaanalyses and papers addressing physical activity behavior for persons with multiple sclerosis were classified to one of the five phases based on the Sallis et al (2000) criteria. The following coding rules were utilized: a) editorials without extensive references were not coded, b) highest phase was coded for papers using multiple categories, c) if physical activity measurement was conducted in the research phase 2 was coded, d) papers with measurement of determinants of physical activity were coded phase 3, and e) measurement of factors related to dissemination was coded phase 5.7 The research team was extensively trained on the framework phases. Training included a presentation on the Sallis et al (2000) article, open-ended discussions, and practice categorizing physical activity research for persons with multiple sclerosis prior to final coding. Out of the initial pool of 139 articles, 50 randomly selected studies were used for a reliability estimate among the three coders. The coders were required to achieve 80% or higher reliability on classifying the phases of the framework prior to coding the remaining studies. The rest of the retrieved articles were dispersed across team members for independent classification. If the research team was unsure of a classification, the coding was resolved with consensus of the group. The percentages of articles categorized in each of the five phases were computed.
Results Using the keywords in the various search engines, 1307 articles were initially identified in MEDLINE (PUBMED), 3462 in EBSCOhost, 866 in PsycINFO, and over 80,000 articles in Google Scholar. Duplicate articles, across the search engines, were identified with the use of an online
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reference program. After conducting the audit of the literature, a total of 139 articles were identified that fit the epidemiological framework criteria and were categorized into one of the five phases. Of the 139 articles, 49% of the articles were in phase 1 (n 5 68), 18% phase 2 (n 5 25), 24% phase 3 (n 5 33), 9% phase 4 (n 5 13), and 0% phase 5 (n 5 0). Fig. 1 displays the percentages of the articles categorized in the five phases. Overall, the majority of the research related to physical activity and multiple sclerosis was coded as phase 1 research. Another phase that was more represented than the others was phase 3, determining the correlates to physical activity behavior. Phases 4 and 5 were the lowest areas of inquiry with no articles in phase 5. Discussion This critical audit of the literature analyzed articles related to physical activity and multiple sclerosis published since 2000 in an effort to categorize papers according to the Behavioral Epidemiological Framework. In the area of physical activity for persons with multiple sclerosis, there is an emphasis on phase 1 research including the link between physical activity and health outcomes (i.e., fatigue, biological response to exercise, gait/mobility, balance, quality of life, depression, pain, cognition, disease progression, coronary heart disease risk, etc). According to the framework, this indicates the current state of research in this field is in its early stages of development/maturity.7 This finding is not surprising, as this area of inquiry has changed over the past few decades. Historically, physical activity has been a controversial topic for individuals with multiple sclerosis, since it was thought to increase fatigue and reduce the ability to perform activities of daily living.10 Specifically, the Uhthoff phenomenon, which is the worsening of symptoms due to elevation in body temperature, was a contributing rationale for the recommendation to avoid physical activity.11 However, as with any sedentary population, limited movement can lead to higher rates of chronic conditions (i.e., obesity, heart disease, diabetes, etc) and result in greater muscular
Fig. 1. Percentage of physical activity articles for those with multiple sclerosis by behavioral epidemiology research phase.
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weakness, fatigues, and deconditioning. To avoid secondary conditions, the research focus in the past decade shifted to examine the known benefits of physical activity on health and particularly the unique benefits of physical activity for persons with multiple sclerosis. Current research has started to consider the appropriate dose or intensity of physical activity to optimize benefits for this population,10,12 while also debunking the previous assumption that physical activity increases the risk of multiple sclerosis progression.13 Research in the past decade has shown that not only does physical activity help to decrease secondary conditions, but it also has other benefits unique for persons with multiple sclerosis. These benefits include symptom management of the effects on fatigue, spasticity, mobility, depression, and pain.5,14e16 Despite the fact that the majority of research was categorized into Phase 1 (49%), conducting phase 1 studies are an important aspect of research for this population as the biological plausibility of how physical activity benefits persons with multiple sclerosis is still relatively unclear. The overall consensus is that physical activity is not harmful and well tolerated, when performed at the appropriate intensity to meet the needs of the individual, and is needed to prevent disuse and secondary conditions for persons with multiple sclerosis.10,14 With the known links between physical activity and positive health outcomes, the use of phase 2 studies to assess physical activity for persons with multiple sclerosis is essential for all stages of the epidemiological framework. For those with multiple sclerosis, the most common physical activity tools have been self-report questionnaires/diaries, pedometers, and accelerometers. Out of the 25 articles in phase 2 research 64% (n 5 16) discussed accelerometer psychometric properties, 56% (n 5 14) subjective self-reported questionnaires/physical activity diaries, and 32% (n 5 8) discussed pedometer validity and reliability. Some of the articles evaluated multiple assessment tools, thus the percentages described above will not equal 100%. In order to plan for effective interventions, phase 3 studies help identify determinants of behavior and implications for theory to focus interventions. From the retrieved studies, the most widely used theory for physical activity and multiple sclerosis is the social cognitive theory and its constructs.17e27 The core determinants that drive the social cognitive theory are knowledge, self-efficacy, outcome expectations, perceived barriers and facilitators, and goal setting.28 Based on phase 3 research, understanding the social cognitive theory components and their relationships with physical activity can help researchers identify focus areas for health promotion programs specifically for persons with multiple sclerosis. Additional theories discussed were the transtheoretical model,3 health belief model,26 Pender model of health promotion,26 transactional model of stress and coping,18 theory of planned behavior,17 self-determination theory,29 physical activity for people with a disability (PAD) model,30 disablement process model,31 phenomenology,32,33 social learning and expectancy-value theory.20
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In conjunction with theoretical underpinnings, phase 3 research also examines determinants of behavior. The following are some of the demographic variables influencing physical activity behaviors discussed in the coded articles: type of multiple sclerosis,19,34,35 age,34,35 severity of disability,5,30 functional limitations,19,27 use of a cane for ambulation,34 severity of multiple sclerosis symptoms,18,33 fatigue,18,20,36 anxiety and depression,35,36 level of cognition,36 family to care for,18,30 and receiving a disability pension.30 Some of the environmental determinants in phase 3 research included: walkability to shops and stores,37 low cost recreational facilities,36,37 social environment (i.e., social support),18 weather,18 and accessible gym facilities.18 Phase 4 and 5 intervention research to improve physical activity behavior in this population was scarce. Many physical activity interventions developed for those with multiple sclerosis have been to demonstrate the benefits of physical activity on health outcomes, which were categorized in phase 1. The essence of phase 4 and 5 research is to utilize established research in the previous phases to increase behavior (i.e., physical activity). The following intervention approaches were utilized in phase 4 research to increase physical activity for this population: internet-based health promotion,38 telephone counseling,39 randomized control trials of structured exercise regimens,11,40e42 health education,43,44 and group wellness interventions.26,45 The research team did not find any phase 5 research that specifically examined the diffusion, dissemination, implementation, and/or sustainability of physical activity interventions/programs within different settings from the original effectiveness trial. Although the framework states that the lack of published research in Phase 4 and 5 portrays a lack of maturity in the field, we also want to recognize that the lack of these studies may also reflect the fact that limited funding is available to conduct intervention studies. It is less expensive to perform secondary analysis on pre-existing data or assess determinants of a behavior through survey methodology than it is to conduct randomized control trials. Therefore, some of the differences in the percentage of studies could be a result of a lack of funding to conduct these studies and not the lack of maturity or efforts of health promotion researchers. The major conclusion of our analysis is the need to produce more translational health promotion programs for those with multiple sclerosis. Creating translational programs is consistent with federal initiatives by the Surgeon General and Healthy People 2020 to improve the health of Americans with disabilities.46,47 Despite the push for translational programs, funding may be difficult to obtain. Thus, it is essential that funding agencies acknowledge the need for health promotion programs for those with multiple sclerosis. Once funding and clear evidence from Phase 1e3 research is available, researchers can begin to effectively develop health promotion programs for those with multiple sclerosis. The use of established health promotion guidelines for designing and
implementing programs in the disability community could provide additional guidance in program development. Experts in disability, public health, and other related fields established guidelines for conducting and implementing health promotion programs for those with disabilities. The following guidelines were determined key for an effective health promotion intervention/program: 1) including an underlying theoretical framework, 2) implementing process evaluation, 3) using disability-appropriate outcome measures, 4) including all stakeholders in the development and implementation of the program, 5) considering the beliefs, practices, and values of the targeted group, 6) making the program socially, behaviorally, programmatically, and environmentally accessible to participants, and 7) creating an affordable program. These guidelines are strongly encouraged to use as the best available set of practices for implementing health promotion programs for those with disabilities.48 The use of these guidelines could help physical activity researchers develop effective translational programs for those with multiple sclerosis, and move the field forward into phases 4 and 5. Furthermore, beyond the scope of our analysis but emphasized in a review from Rimmer et al (2010), there are specific areas of improvement for physical activity intervention studies that should be addressed in future multiple sclerosis research. As discussed in the Rimmer et al review, disability interventions often lack evidence-based rigor with few randomized control trials and insufficient follow-up assessments examining long term effects of interventions.49 Furthermore, less than half of the physical activity interventions examined in the review (i.e., 32 out of 80 interventions) were randomized control trials. In spite of the known difficulties in obtaining a sufficient sample size and randomizing disability populations for randomized control trials, more attempts to develop physical activity interventions of evidence-based rigor would strengthen the field of multiple sclerosis research and clearly demonstrate the positive effects of physical activity on health. Moreover, the framework utilized in this literature review to describe the state of physical activity research for those with multiple sclerosis is not without limitations. First, our study only captures physical activity research following 2000. Thus, we cannot comment on the physical activity research prior to 2000 and the potential change of research focus over time. In addition, we cannot guarantee that we did not miss articles not published within the designated search engines specified in the methods. The lack of Phase 5 research may be in part due to the traditional search methods used, potentially limiting the representativeness of the articles. For instance, practitioners, within the community, who use interventions developed in Phase 4 may not write them up in a peer reviewed journal; instead the findings may appear in technical reports, which were not reviewed. In addition, if studies did not identify that they were using an intervention reported in a Phase 4, it might not have been identified as Phase 5 in this audit.
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By the nature of a scoping review, we aimed to identify the extent of research evidence in the area, without additional inquiry regarding the intrinsic quality of the reviewed articles.8 Thus, we recognize that there are limitations in the rigor of this type of review. In particular, the framework described the types of studies published; however, the studies were not assessed based on methodological, theoretical, or conceptual quality or innovation.7,8 As Sallis et al suggest, the Behavioral Epidemiological Framework in combination with formal methodological guidelines for evidence-based studies could provide more informative evaluation of the field. Despite the limitations, the use of the behavioral epidemiological framework to classify physical activity research provides critical insight to the state of physical activity research for those with multiple sclerosis. This study will hopefully encourage researchers to fill in the gaps within the framework to ultimately improve health behavior research for those with multiple sclerosis. Our systematic review demonstrates that the current state of physical activity research for persons with multiple sclerosis is still in its infancy due to the low percentage of articles in phases 4 and 5. This evidence should begin to stimulate discussions surrounding behavior change interventions to improve the health and wellness for those with multiple sclerosis and how to fund the development of these interventions.
Conclusion Based on the results of the scoping review, the Behavioral Epidemiological Framework provides the first steps in classifying disability and health behavioral research. This evaluation of physical activity studies for persons with multiple sclerosis highlighted areas of strength and areas for future research. With this information, researchers can design studies specifically targeting these areas of need, allowing the field to grow and progress. The review shows a lack of research in phases 4 and 5, suggesting the need to expand on behavior change interventions. Although the creation and implementation of these programs are important for improving health, the other phases of research are also critical. Since physical activity for individuals with multiple sclerosis is a growing field, a reassessment of the available research in the future could give insight into whether the field is progressing forward or maintaining current research trends. We would further recommend a systematic review to evaluate the internal quality of the articles included in this study. References 1. Mayr W, Pittock S, McClelland R, Jorgensen N, Noseworthy J, Rodriguez M. Incidence and prevalence of multiple sclerosis in Olmsted County, Minnesota, 1985e2000. Neurology. 2003;61(10): 1373e1377.
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