Why do they do it? Assessing self-report physical activity behavior and quality of life in individuals with multiple sclerosis

Abstract

Physical activity has been shown to effectively aid multiple sclerosis symptom management; however, individuals with multiple sclerosis tend to be inactive physically. Developing effective, sustainable, physical activity interventions involves first understanding motivators for physical activity. Open-ended surveys exploring physical activity motivators were collected from 215 individuals with multiple sclerosis. Responses indicate that self-efficacy and internalized motivation derived from physical activity outcomes were motivators for physical activity, and physical activity was cited as increasing overall quality of life. Future physical activity interventions should incorporate methods for building self-efficacy for physical activity and focus on increasing awareness of the long-term physical benefits derived from physical activity.

Keywords

chronic illness motivation motivators and barriers physical activity quality of life self-efficacy

Background

Multiple sclerosis (MS) is a chronic degenerative autoimmune disease of the central nervous system that impacts approximately 400,000 people in the United States and 2.1 million people world-wide (National Multiple Sclerosis Society (NMSS), 2005). There is no known cure, and the only course of action is disease management with a goal of slowing progression and controlling symptoms (Coyle and Hamond, 2006; NMSS, 2005). Symptoms of MS may include (but are not limited to) muscle weakness, loss of coordination, cognitive impairments, vision problems, bowel and bladder control problems, and additional neurologically based issues, meaning the list of symptoms is extremely vast and varies by individual (Coyle and Hamond, 2006; Iezzoni, 2010). These symptoms can drastically reduce quality of life (QOL) for the patient. Therefore, it becomes imperative that all possible steps are taken to slow disease progression and control symptoms, with a goal of long-term QOL enhancements. Methods for disease management primarily include drug therapy; however, increasingly, individuals diagnosed with MS are turning to other lifestyle modifications to aid in overall disease control. One of these modifications that has been extremely successful is the incorporation of regular physical activity (PA).

PA has been shown to be an effective means to aid in MS symptom management for many individuals diagnosed with MS (Motl et al., 2005; Motl and Pilutti, 2012). Benefits of regular PA participation include a reduction in physical and cognitive symptoms as well as a reduction of the length and duration of disease flare-ups (Snook and Motl, 2009; Stuifbergen et al., 2006). For this reason, PA appears to be a viable intervention in conjunction with drug therapies for many individuals with MS to aid in long-term disease management. Integrating PA into the lives of the individual upon initial diagnosis (if he/she is not already active), before symptoms progress to a point where PA is physically impossible, can be a way to aid in disease management with a simple lifestyle change. Current recommended PA levels for individuals diagnosed with MS, at least 30 minutes of moderate intensity aerobic exercise twice per week and strength training for all the major muscle groups at least twice per week, should be achievable for most individuals (Latimer-Cheung et al., 2013). In spite of this growing body of evidence, the MS population as a whole is very physically inactive (Motl and Snook, 2008; Petajan et al., 1996), and very few individuals diagnosed with MS meet the recommendations (Klaren et al., 2013). The lack of PA in this population presents a complex problem due to the large number of benefits PA presents for these individuals, namely, aiding in symptom control which is often absent from the lives of people diagnosed with MS.

In addition to the physiological benefits that individuals diagnosed MS see from PA participation, there also appear to be benefits to overall QOL (Motl and Gosney, 2008; Motl and Snook, 2008; Petajan et al., 1996; Stuifbergen et al., 2006; Sutherland et al., 2001). In light of what disease symptom control can represent to an individual, this increased QOL is a desirable outcome. Controlling or slowing the progression of the aforementioned symptoms, even minimally, could have a huge impact on how individuals diagnosed with MS experience their lives. For instance, even minimal symptom control could mean the difference between limited mobility and being mobile enough to get around one’s home without assistance, walk up and down stairs, or drive a car. These enhanced abilities translate into improved QOL, and for this reason, there is a direct link between symptoms and reported QOL (Motl and Gosney, 2008).

Previous research on motives for PA in individuals with MS has followed social cognitive theory (SCT) (Motl and Snook, 2008; Young et al., 2014). SCT relies heavily on the concept of self-efficacy—which is an individual’s belief in their ability to succeed in a given situation (Bandura et al., 1977). The more self-efficacy an individual possessed for a behavior, the more likely the individual will maintain the behavior long term (Bandura, 2004). Similar to SCT, self-determination theory (SDT) is based on the general cognitive behavioral framework. SDT relies on the basic needs of competency, autonomy, and relatedness as the driving constructs for behavior motivation and focuses on the origination of needs in the individual (Deci and Ryan, 1985, 2004) As the individual’s ability to meet the aforementioned basic needs increases, motivation for the behavior becomes internalized, and the individual continues the behavior long term. Internalization of motivation exists on a continuum between extrinsic (motivation from external sources) and intrinsic (fully internalized and autonomously driven) (Deci and Ryan, 1985). Because SDT examines the origin of the motivation, it provides a framework that explores motivation in a detailed manner to predict PA participation.

There is support for using SDT and SCT in tandem to gain a better understanding of PA motivation (Sweet et al., 2012). Using self-efficacy to indicate an individual’s overall confidence in PA participation and SDT to indicate how self-determined the motivation is, a more complete picture of PA motivation emerges (Sweet et al., 2012). The current project uses a lens of self-efficacy in conjunction with SDT to examine the motivational aspects of PA participation in individuals with MS. For individuals dealing with a chronic degenerative disease, such as MS, motivation for PA behavior is multifaceted. Constantly changing physical abilities, emotional stress, and depression are just a few of the numerous factors that may complicate motivation for PA (Motl et al., 2005), and therefore a multifaceted approach is necessary to fully understand this behavior.

Methods

A mixed-method approach, using qualitative surveys to locate and describe participants and their basic PA behaviors, combined with detailed, open-ended responses to behavioral motivation questions, was used to add depth of meaning and provide a more complete picture of participants. Inclusion criteria for participation was any individual between the ages of 18 and 65 years old who had received a clinical diagnosis of MS at least 1-year prior. This 1-year requirement was to ensure that they were not still in the initial acute flare-up that prompted diagnosis and have had time to live with MS. There were no other criteria for participation.

Research was approved by the Institutional Review Board, and data were collected using an online anonymous Qualtrics survey. The decision to use online surveys was made in order to reach a large number of participants from a wide geographical area in a short period of time with minimal costs (Ward et al., 2014). Online surveys have been shown to give participants a greater feeling of anonymity and consequently responses may be more direct and open than traditional paper and pencil methods (Cronk and West, 2002; Roster et al., 2004); however, online data collection is not without its challenges. The demographic in an online survey is immediately limited to those individuals who have access and ability to use a computer, and ethical concerns around maintaining true anonyminity must be addressed (Ahrens, 2005; Rhodes et al., 2003). For these reasons, a detailed demographic questionnaire was used to ensure a wide range of participants, and Qualtrics collected no identifiable information from any log-ins to the survey.

The National Multiple Sclerosis Society (NMSS) approved the study for distribution through its organization and posted information and the survey link on the NMSS website (www.nmss.org). Additionally, all 34 NMSS regional chapters were contacted via email explaining the study and asking for assistance in distribution. Nine chapters responded and agreed to help; of those nine, six (North Carolina/South Carolina, Georgia, Alabama, Ohio, Northern California, Gateway Area) sent the link directly to regional support groups for distribution directly to members (via email and/or to be announced during monthly self-help in-person meetings) and three (New England, Indiana, New York City/Southern New York) placed the link in email blasts/monthly mailed newsletters. Concurrently, a social media flyer was shared via Facebook (www.facebook.com). This flyer was posted as a “public” flyer, meaning that it could be seen and shared by anyone on Facebook. It was shared by 37 different individuals.

Measures

Basic demographic measures (age, gender, time since diagnosis, type of PA) were collected from participants, along with established measures of disease step and current PA level to confirm PA levels and disability level. Open-ended questions about PA, MS, and QOL were then asked to allow participants to share their experiences in their own words.

Patient-Determined Disease Step

The Patient-Determined Disease Step (PDDS) is a single question ordinal scale that asks participants to self-rate the severity of their disease symptoms from 0—Normal: “I may have some mild symptoms, mostly sensory due to MS but they do not limit my activity. If I do have an attack, I return to normal when the attack has passed” to 8—Bedridden: “Unable to sit in a wheelchair for more than one hour” (Hohol et al., 1995; 1999). The PDDS was developed as a self-report reflection of the clinical standard Expanded Disability Status Score (EDSS) neurological assessment done by physicians (Kuttzke, 1983).

Godin Leisure-Time Physical Activity Questionnaire

The Godin Leisure-Time Physical Activity Questionnaire (Godin) is a three-question, self-report measure that assesses the frequency that individuals engage in bouts of PA at light, moderate, and strenuous levels (Godin and Shephard, 1985). The measure asks frequency of PA at each activity level and uses a formula to calculate a score (metabolic equivalent (MET) value) for weekly activity. The higher the overall score, the greater the PA level. The MET scores can also be used to classify PA participation as “active” (≥ 24 METS) and “insufficiently active” (≤ 23 METS).

Open-ended responses

Open-ended questions regarding the participants’ experiences with MS, PA, and overall QOL were asked. Questions were as follows: Describe your overall QOL, How does MS impact your life, What motivates you to be physically active, How does physical activity specifically relate to your MS, and How does physical activity relate to your overall QOL? These questions were designed to provide insights by allowing participants to give detailed explanations of the role PA plays in their lives. Capturing this information using quantitative measures loses the depth of information necessary to truly understand the complex interaction of life with MS, PA participation, and QOL.

Data analysis

A phenomenological approach directed at the common lived experiences surrounding PA participation in individuals diagnosed with MS (Creswell, 2013). As such, the analysis focused on the descriptions of the experiences of the individuals as told in their responses and how PA impacts their lives (Moustakas, 1999). Responses to the five open-ended questions were first read by two separate researchers individually, and a list of clusters of meaning was created for each question. If a response did not fit into an already determined cluster, a new cluster was added until an exhaustive list of responses was compiled (Creswell, 2013). The researchers then met and discussed coding of the individual responses until all clusters were agreed upon, as is acceptable protocol for consensus coding (Creswell, 2013). The agreed-upon clusters were in line with the research questions and were shaped by the actual responses of the participants. After all coding was agreed upon, individual responses for each question were counted to determine the number that corresponded with each code. These totals are presented in Tables 4 to 8.

Results

The survey link collected 305 total responses; a response was categorized as any individual who clicked on the survey link that took them to the informed consent and study description. Of the 305 responses, 50 were removed because they did not answer any questions and exited out of the survey without progressing past the informed consent and study description. A total of 36 respondents did not complete all the demographics and/or main research questions and therefore were deemed incomplete and not useable. Four responses were removed because the participants did not fit the inclusion criteria (two were over the age of 65, and two did not report having MS). The final sample consisted of 215 individuals between the ages of 18 and 65 years who had been diagnosed with MS at least 1 year prior to participation. Respondents had a mean age of 48.9 years (standard deviation (SD) = 9.4), with an average time with MS of 11.96 years (SD = 8.28), were 80 percent female (n = 172) and 20 percent male (n = 43), and were predominantly white (n = 197).

Due to the variability of MS, information was collected about the participants’ current stage of MS (PDDS), PA level currently and prior to diagnosis, and Godin PA level, and most common symptoms (Tables 1 to 3). Linear regression indicated a significant relationship between the Godin PA level and PDDS score (F(1, 214) = 27.56, p < 0.01, R² = 0.115). Individuals self-reported higher PA levels than what the Godin assessed when actual activity levels were examined (χ²(1, 214) = 5.347, p < 0.05).

Table 1.

Participant PDDS scores.

PDDS score	Frequency	Percentage
0	56	26.0
1	29	13.5
2	23	10.7
3	32	14.9
4	25	11.6
5	18	8.4
6	19	8.8
7	13	6.0
8	0	0

PDDS: Patient-Determined Disease Step.

Table 2.

Self-report PA before MS diagnosis, PA currently, and Godin PA level.

Physically active before MS?	Frequency	Percentage
Yes	187	87
No	28	13
Physically active currently?	Frequency	Percentage
Yes	134	62.3
No	81	37.7
Godin PA	Frequency	Percentage
≤23—insufficiently active	119	55.3
≥24—active	96	44.7

PA: physical activity; MS: multiple sclerosis.

Table 3.

Most common MS symptoms reported by participants.

Symptoms	Frequency^a	Percentage
Fatigue	109	50.7
Gait/coordination/muscle weakness	98	45.6
Neuropathy/numbness/tingling/burning/itching	73	34.0
Cognitive/brain fog/memory issues	66	30.7
Vertigo/dizziness/balance	43	20.0
Vision problems	39	18.1
Pain	35	16.3
Bladder/bowel	33	15.3
Stiffness/spasticity/cramping	27	12.6
Emotional disturbances/depression	15	7.0
Heat intolerance	8	3.7
Insomnia	6	2.8
Speech problems	6	2.8
Headache	6	2.8
Breathing/swallowing difficulties	4	2.0
MS hug (tightness in chest cavity)	4	2.0
Sexual dysfunction	2	1.0
Tremors	2	1.0
Seizures	2	1.0
Ringing in ears	1	0.4
Stomach/digestive issues	1	0.4
Weight loss	1	0.4
Dysautonomia	1	0.4
Increased blood pressure/heart rate	1	0.4
None	1	0.4

MS: multiple sclerosis.

Most participants reported more than one symptom.

Participants reported a wide variety of symptoms as a result of MS and most reported multiple symptoms (Table 3). The most common symptom, fatigue, was reported by 50.7 percent of participants, and almost half (45.6%) reported gait/coordination/muscle weakness as a symptom. Most symptoms related to physical functioning. The only non-physical symptom reported was emotional disturbances/depression (7% of participants). Only one participant reported not experiencing symptoms.

Open-ended responses

Upon completion of the self-report questionnaires, participants were asked to respond to five open-ended questions. These questions asked participants to describe their overall QOL, indicate the impact of MS on their overall QOL, indicate their motivation for PA, discuss the relationship between PA and MS, and explain their affective responses to PA. Responses were summed based on individual questions and are represented with frequencies in Tables 4 –8. Anecdotal evidence is also provided.

Table 4.

Overall QOL of participants.

Theme/description	Number of participants	Percentage of total
Excellent/MS has little or no impact, I am happy with how my life is	81	45.8
Good days and bad days, some limitations but mostly positive QOL	43	24.3
QOL is okay but there are limitations/challenges, MS definitely impacts it, neither good nor bad	21	11.9
QOL is declining, MS impacts ability and overall QOL on regular basis	18	10.2
QOL is poor, there is severe MS impact, feelings of isolation, desperation	14	7.9

QOL: quality of life; MS: multiple sclerosis.

Table 5.

Impact of MS on overall QOL of participants.

Theme/description	Number of participants	Percentage of total^a
None. MS does not impact QOL	27	15.3
MS has some impact on life but positive outlook and good QOL in spite of symptoms	25	14.1
MS limits physical ability, causes fatigue, decreases QOL in some way	66	37.3
MS limits cognitive functioning, emotion strain, increased depression	18	10.1
MS limits job abilities, employment status, activities, social abilities	26	14.7
MS general limits all aspects of QOL, QOL is poor due to MS	40	22.6

MS: multiple sclerosis; QOL: quality of life.

Percentages total more than 100 percent because some responses listed more than one impact; for example, many individuals cited both physical challenges and cognitive difficulties.

Table 6.

Motivation for PA participation.

Theme/description	Number of participants	Percentage of total^a
Control physical MS symptoms	28	16
Control cognitive MS symptoms	2	1.1
Stress management	2	1.1
Others (family, friends, health care professionals, dog)	42	24
Accomplishment, identity, because I can	8	4.6
Overall health, weight loss, increased strength	48	27.4
Enjoyment, feel better/good, increased mood	37	21.1
Physical appearance, to look good	7	4
Nothing, not motivated, can’t do PA	23	13.1
To beat MS	11	6.3

PA: physical activity; MS: multiple sclerosis.

Percentages total more than 100 percent because some responses listed more than one impact; for example, many individuals cited being active for their families and to feel better.

Table 7.

Specific ways PA relates to the individual’s MS.

Theme/description	Number of participants	Percentage of total^a
Move it or lose it, controls symptoms, disease management	53	30.6
Manage stress	2	1.1
Negative impact of PA, pain, fatigue, increased symptoms	32	18.5
Not able to be physically active	5	2.9
Increases mental state, emotional wellness, self-confidence, generally make me feel good	7	4
PA for general health and well-being, strength	11	6.4
Limited ability to do PA, less PA than before MS	34	19.7
PA and MS related but undefined by response	15	8.7
Not related. MS does not impact PA levels	12	6.9
N/A. Not physically active, don’t want to be	7	4

PA: physical activity; MS: multiple sclerosis.

Percentages total more than 100 percent because some responses listed more than one impact; for example, many individuals cited both long-term physical benefits and fatigue immediately post-exercise.

Table 8.

Positive and negative outcomes to PA participation.

Theme/description	Number of participants	Percentage of total^a
Negative PA outcomes
Pain, muscle soreness, physical issues, added limitations	10	5.7
Tired, fatigue, no energy	58	33.1
Overheated, hot, heat problems	2	1.1
Anxious, depressed, sad, frustrated	6	3.4
Positive PA outcomes
Positive emotional responses—confident, accomplished, enjoyment, happy, and so on	110	62.9
Cognitive improvements, thinking better	4	2.3
Physical improvements, strong, healthy	20	11.4
More energy, energized, full of life	5	2.9
N/A
Explicitly stated that they cannot/do not exercise	7	4

PA: physical activity.

Percentages total more than 100 percent because some responses listed more than one impact; for example, many individuals cited both positive emotional response and fatigue.

Describe your overall QOL

Approximately two-thirds of participants described their QOL as positive. “My QOL is excellent.” Many of these participants reported the occasional bad day due to MS symptoms but still reported overall good QOL:

In spite of physical limitations, I have a great QOL. I am active and that’s important to me. I do not drive but my husband drives me and participates in most of my activities. We go to the gym together but we each do our separate workouts.

A smaller portion of participants reported declining or poor QOL. Those who reported poor QOL cited MS symptoms as the cause. “I feel like I don’t even have a QOL, if I do, it is so low because I can’t do the things I used to enjoy.” This sentiment was echoed by those who cited low QOL. A summary of responses and percentage of respondents can be seen in Table 4.

How does MS impact your overall QOL?

This question prompted more than one response from some participants. Many discussed physical and/or cognitive symptoms that limited the ability to live a normal life and the impact that had on their overall QOL. “MS impacts me mostly from cognitive issues which all but paralyzes me at times. It is hard to communicate when you can’t talk.” Others indicated that MS symptoms sometimes affected their lifestyle but did not affect their QOL. “I don’t think my MS has had an impact on my overall QOL. I just work around the few mild symptoms that I do have.” Some respondents indicated that MS had no impact whatsoever on their lives “It doesn’t,” “Minimally,” and “Not at all” were reported by this group of participants. For a summary of responses, see Table 5.

What motivates you to be physically active (if you are)?

This question directly asks about the motivation for PA participation. The results were in line with SDT. A small number of participants reported no motivation for PA participation (amotivation). “Nothing” and “Not very” were typical of these short responses. A number of participants reported being active for others (introjected regulation). “For my grandkids,” “My girlfriend motivates me to be healthy,” and even “My dog is a motivator. I’ve had her for 15 years, purposefully to keep me moving even if I was too tired.” For these individuals, they are motivated by the obligation to be healthy for the people (or animals) in their lives. A majority of participants reported some type of disease symptom control, physical benefit, health and wellness, or just generally to beat MS as the reason they were physically active (identified regulation). “I can control my cognitive symptom of MS better when I am physically active,” “I work out to keep my muscles strong. I feel that if I keep them strong, I can control them better,” and “I know swimming and strength training have made a huge impact on my MS symptoms. My gait and overall QOL improved” are representatives of the responses given. A number of participants reported participating in PA for the enjoyment of the activity (intrinsic motivation). “Because I love it” and “enjoyment” were the types of responses these individuals gave. Self-efficacy was also a theme throughout the responses. “Because I can” was a sentiment that was cited by more than one participant. A summary of responses can be found in Table 6.

How does PA specifically relate to your MS?

Many participants reported physical and/or psychological benefits and symptom management as a result of this relationship. “It helps manage stress which in turn helps manage my MS,” “The less I move the more spasticity I endure in my shoulders, arms, neck, hips and calves” and

I believe that physical activity is key to those that are living with MS. Muscle atrophy is a symptom that I experienced in my legs. I was able to slowly get strength back by being consistent over time with my workouts.

Other participants reported physical weakness or pain as a result of PA. “Fatigue, fatigue, fatigue” and “Makes me pass out” are representatives of the answers in this theme. Many of these participants reported continuing with PA because of the long-term physical benefits they saw even if the immediate result was negative. “Overall it helps but it is hard to stick it out sometimes because of the pain” and “It is more difficult to exercise because heat triggers symptoms but it is worth it” were ways that this relationship got explained. A small number of participants reported no relationship or no desire or ability to participate in PA. For a summary of all responses, see Table 7.

How does PA make you feel?

This question prompted participants to talk about the positive and negative outcomes of PA participation. Both physical and psychological benefits were included. Many participants simply responded “good” or “excellent” in response to the question. Others elaborated on the positive feelings elicited, for example one participant said “It’s always hard to get to the gym, but after my workouts I feel happy and like I achieved a big goal.” The most common negative responses were pain- and fatigue-related issues. “Extremely fatigued,” “HOT and sometimes that increases my fatigue,” and “Sore, tired, painful some days” were typical response from participants with this theme. Some participants acknowledged both positive and negative outcomes. “Physical activity makes me feel great mentally but exhausted physically.” For this individual, the benefits from PA are recognized, and a reason to continue participating but the negatives also contribute to the decision to participate. For a complete summary of all responses and percentages, see Table 8.

Discussion

The participants’ responses to the open-ended questions supported PA enhancing overall QOL and MS negatively impacting QOL. This aligns with previous research and was not unexpected (Motl and Gosney, 2008). A majority of participants reported excellent or good QOL, with 70 percent of responses in these two categories. However, when asked specifically about the impact of MS on QOL, only 15 percent of respondents reported that MS did not have any impact on QOL. The remaining 85 percent of respondents indicated various ways that MS negatively impacted their lives including limiting physical ability and causing fatigue, limiting cognitive functioning, causing emotional strain, and increasing depression, limiting employment status and social ability, and generally decreasing all aspects of QOL. This is in line with previous research showing a negative impact on QOL as a result of MS symptoms (Motl and McAuley, 2010). These responses suggest that although many individuals diagnosed with MS do report high levels of QOL, MS still has a negative impact on QOL. Therefore, if there are additional means to increase QOL, such as PA, these means should be explored.

Participants discussed how PA participation increased overall QOL and also how PA increased specific aspects of QOL. It has been posited that QOL is a multidimensional construct and as such, increasing all dimensions of QOL, (social, emotional, physical, spiritual, activities of daily living/functional, cognitive, and overall), increase an individual’s overall QOL more than when only one or two dimensions are addressed (Gill et al., 2011). Participants cited improvements in more than one type of QOL resulting from PA participation. For instance, one participant wrote (in response to the question about what motivates her to be physically active): “The fellowship. The feeling of pride I get about myself. The wonderful feeling of using and stretching my muscles, and hopefully weight loss!!” These three responses address social, emotional, and physical QOL. As suggested by many of the responses, this multidimensional impact on more than one aspect of QOL makes PA a means to make a broader impact than other treatments. For example, if an individual diagnosed with MS increased their social QOL through a group PA program and also saw physical benefits from the PA, more than one dimension of QOL is being impacted through this activity. This makes PA especially beneficial for increased overall QOL.

As has been seen in previous research, participants who reported being physically active also appeared to have increased self-efficacy for PA and their ability to use PA to enhance well-being and QOL (Motl and Snook, 2008). This was expected and should be a continued consideration when PA interventions are designed. PA was reported as making participants feel “strong” and “accomplished”—feelings that correspond with high levels of self-efficacy and promote continued participation. Additionally, self-efficacy may be developed through mastery experiences or those in which an individual uses his/her own past successfully accomplished tasks as predictors for present behavior (Bandura et al., 1977). It was found that participants felt more confident to continue being active due to a reduction in physical and cognitive MS symptoms after previous bouts of PA. Developing strong self-efficacy for PA as the individual is learning new forms of PA should be part of any intervention designed to increase participation in the MS population.

An understanding of increased motivation for PA involves self-efficacy, but it also includes an internalization for the behavior in question. Using a SDT framework, an examination of the type of motivation for PA reported by participants appears to be primarily internalized. These individuals are driven to be physically active by a desire for overall health and well-being as well as a means to control MS. This is reflective of self-regulated autonomous behavior in the SDT framework—motivation for a behavior because of the outcome and results that are seen through choices the individual is making. This type of self-regulated motivation is internalized and tends to promote long-term behavior adherence (Patrick and Canevello, 2011). The individual sees specific benefits, and these benefits become the internal drive for continued long-term participation.

When examining PA behavior, it is important to consider the information gathered by self-reported PA levels. An examination of the PA data reflected more individuals self-identified as being physically active (62.3% physically active) than the results of the Godin measure assessed (classified as 44.7% active). This suggests that although many individuals reported being physically active, they did not participate in sufficient PA to be classified as such by the Godin. This explains the discrepancy between the reported PA levels in Table 2. This also suggests that education regarding what is classified as PA and how PA should be incorporated into interventions developed for individuals diagnosed with MS aimed at long-term PA participation needs to be a focus. Although individuals think they are participating in sufficient PA, this is not always the case. These results are in line with previous research on PA behavior in the general population which has found that individuals tend to overestimate actual PA participation (Adams, 2005).

As with all research, this project is not without limitations. These data were collected through self-report, online surveys. This allowed for a larger scale data collection; however, the depth of meaning derived from this manner of data collection may not be as thorough as could have been gathered with one-on-one interviews. The information gathered was also limited to the questions asked by the researchers. These questions were informed by the literature, but it is possible that there are gaps in information due to the limited scope of questioning. For instance, the questions did not directly address barriers to PA participation, which could have added an additional dimension to the understanding of motivation for PA. Future research should focus on developing PA interventions aimed at increasing PA by focusing on the benefits directly gained from PA, with the goal of increased overall QOL.

Conclusion

The goal of this project was to examine a large scale of qualitative responses from individuals living with MS regarding their PA behavior, self-perceived facilitators and motivators for this behavior, and overall perceptions of QOL. Understanding motivation for PA and the resulting impact on QOL is the first step in effectively developing interventions aimed at long-term PA maintenance. The knowledge of the motivations for PA within the MS population may be beneficial for symptom reduction, improved QOL, and the development of interventions for use within this unique population who can greatly benefit from regular PA. Practical implications for professionals could include increasing self-efficacy through continual monitoring of progress and goals, developing PA competencies that correspond with the individual’s strengths and limitations, providing the individual with variation and choices in the specifics of the PA intervention, and educating participants on the long-term QOL benefits from PA participation.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Kimberly S Fasczewski

References

Adams

(2005) The effect of social desirability and social approval on self-reports of physical activity. American Journal of Epidemiology 161(4): 389–398.

Ahrens

(2005) Using the internet to conduct research. Nurse Researcher 13(2): 55–71.

Bandura

(2004) Health promotion by social cognitive means. Health Education & Behavior 31: 143–164.

Bandura

Adams

Beyer

(1977) Cognitive processes mediating behavioral change. Journal of Personality and Social Psychology 35: 125–139.

Coyle

Hamond

(2006) Multiple sclerosis. In: Coyle

Hamond

(eds) Neurologic Diseases in Women. New York: Demos Medical Publishing, pp. 265–287.

Creswell

(2013) Qualitative Inquiry and Research Design (3rd edn). Thousand Oaks, CA: SAGE.

Cronk

West

(2002) Personality research on the internet: A comparison of web-based and traditional instruments in take-home and in-class settings. Behavior Research Methods, Instruments, & Computers 34(2): 177–180.

Deci

Ryan

(1985) Intrinsic Motivation and Self-determination in Human Behavior. New York: Plenum Publishing.

Deci

Ryan

(eds) (2004) Handbook of Self-determination Research (softcover edn). Rochester, NY: University of Rochester Press.

10.

Gill

Chang

Y-K

Murphy

, et al. (2011) Quality of life assessment for physical activity and health promotion. Applied Research in Quality of Life 6(2): 181–200.

11.

Godin

Shephard

(1985) A simple method to assess exercise behavior in the community. Canadian Journal of Applied Sport Sciences 10(3): 141–146.

12.

Hohol

Orav

Weiner

(1995) Disease steps in multiple sclerosis: A simple approach to evaluate disease progression. Neurology 42(2): 251–255.

13.

Hohol

Orav

Weiner

(1999) Disease steps in multiple sclerosis: A longitudinal study comparing disease steps and EDSS to evaluate disease progression. Multiple Sclerosis 5(5): 349–354.

14.

Iezzoni

(2010) Multiple Sclerosis (1st edn). Santa Barbara, CA: ABC-CLIO, LLC.

15.

Klaren

Motl

Dlugonski

, et al. (2013) Objectively quantified physical activity in persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation 94(12): 2342–2348.

16.

Kuttzke

(1983) Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology 33(11): 1444–1452.

17.

Latimer-Cheung

Martin Ginis

Hicks

, et al. (2013) Development of evidence-informed physical activity guidelines for adults with multiple sclerosis. Archives of Physical Medicine and Rehabilitation 94(9): 1829–1836.

18.

Motl

Gosney

(2008) Effect of exercise training on quality of life in multiple sclerosis: A meta-analysis. Multiple Sclerosis 14(1): 129–135.

19.

Motl

McAuley

(2010) Symptom cluster and quality of life: Preliminary evidence in multiple sclerosis. Journal of Neuroscience Nursing 42(4): 212–216.

20.

Motl

Pilutti

(2012) The benefits of exercise training in multiple sclerosis. Nature Reviews. Neurology. 8: 487–497.

21.

Motl

Snook

(2008) Physical activity, self-efficacy, and quality of life in multiple sclerosis. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine 35(1): 111–115.

22.

Motl

McAuley

Snook

(2005) Physical activity and multiple sclerosis: A meta-analysis. Multiple Sclerosis 11(4): 459–463.

23.

Moustakas

(1999) Phenomenological Research Methods (6 print). Thousand Oaks, CA: SAGE.

24.

National Multiple Sclerosis Society (NMSS) (2005) Multiple Sclerosis Information Sourcebook. New York: Information Resource Center; Library of the National Multiple Sclerosis Society.

25.

Patrick

Canevello

(2011) Methodological overview of a self-determination theory-based computerized intervention to promote leisure-time physical activity. Psychology of Sport and Exercise 12(1): 13–19.

26.

Petajan

Gappmaier

White

, et al. (1996) Impact of aerobic training on fitness and quality of life in multiple sclerosis. Annals of Neurology 39(4): 432–441.

27.

Rhodes

Bowie

Hergenrather

(2003) Collecting behavioural data using the world wide web: Considerations for researchers. Journal of Epidemiology and Community Health 57(1): 68–73.

28.

Roster

Rogers

Albaum

, et al. (2004) A comparison of response characteristics from web and telephone surveys. International Journal of Market Research 46(3): 359–373.

29.

Snook

Motl

(2009) Effect of exercise training on walking mobility in multiple sclerosis: A meta-analysis. Neurorehabilitation and Neural Repair 23(2): 108–116.

30.

Stuifbergen

Blozis

Harrison

, et al. (2006) Exercise, functional limitations, and quality of life: A longitudinal study of persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation 87(7): 935–943.

31.

Sutherland

Andersen

Stoové

(2001) Can aerobic exercise training affect health-related quality of life for people with multiple sclerosis? Journal of Sport and Exercise Psychology 23(2): 122–135.

32.

Sweet

Fortier

Strachan

, et al. (2012) Testing and integrating self-determination theory and self-efficacy theory in a physical activity context. Canadian Psychology/Psychologie Canadienne 53(4): 319–327.

33.

Ward

Clark

Zabriskie

, et al. (2014) Paper/pencil versus online data collection. Journal of Leisure Research 46(1): 84–96.

34.

Young

Plotnikoff

Collins

, et al. (2014) Social cognitive theory and physical activity: A systematic review and meta-analysis. Obesity Reviews 15(12): 983–995.