High Satisfaction and Improved Quality of Life with Rock Steady Boxing in Parkinson’s Disease: results of a large-scale survey
Larson D, Chen Y, Rafferty M, Bega D. High satisfaction and improved quality of life with Rock Steady Boxing in Parkinson’s disease: results of a large-scale survey. Disability and Rehabilitation. 2021;44(20):6034-6041. doi:10.1080/09638288.2021.1963854Link to Original Article: https://www.tandfonline.com/doi/full/10.1080/09638288.2021.1963854
Key Points
1. The study compares demographics, self-reported symptom burden, Health-Related Quality of Life (HRQL), and Self-Efficacy for Exercise (SEE) between participants and non-participants of Rock Steady Boxing (RSB), a non-contact boxing program for individuals with Parkinson’s disease (PD).
2. RSB participants reported improvement in non-motor impairments, including fatigue, fear of falling, depression, and anxiety, and had significantly better HRQL and SEE compared to never-participants.
3. Parkinson’s disease (PD) is a neurodegenerative condition that affects motor function and quality of life. Exercise is increasingly recognized as an important treatment for motor and non-motor symptoms of PD.
4. RSB is a specific non-contact boxing program designed for people living with PD, emphasizing multi-modal exercises to improve both fine and large motor impairments, socialization, and empowerment.
5. The survey revealed high satisfaction with the RSB program, with self-reported benefits on quality of life, depression, anxiety, and fatigue. The majority of RSB participants reported improvement in their social life and non-motor impairments.
6. RSB participants reported improvement in difficult-to-treat non-motor PD impairments, suggesting advantages of this PD-specific group-based exercise style over other forms of exercise for individuals with PD.
Introduction
Parkinson's disease (PD) affects an estimated 572 per 100,000 individuals in the United States and is the second most common neurodegenerative disorder. PD is characterized by both motor (tremor, bradykinesia, rigidity, and postural instability) and non-motor impairments (fatigue, apathy, anxiety, and depression). The effects of non-motor impairments can be disabling and lead to a decreased quality of life. Pharmacologic interventions have limitations in addressing non-motor impairments, leading to a decreased quality of life for PD patients. Various forms of exercise including aerobic, strength training, yoga, Tai Chi, and Tango dancing have shown positive impacts on both motor and non-motor features of PD. Rock Steady Boxing (RSB) is a non-contact boxing fitness program designed specifically for people with PD, incorporating multi-modal exercises aimed at improving motor impairments and promoting socialization. The RSB program has grown rapidly, with approximately 43,500 participants at 900 sites internationally, leading to a need for more specific data regarding its impact on PD impairments.
Studies have shown that participating in RSB is associated with improvements in gait velocity, mobility, quality of life, and UPDRS motor scores. RSB participants have reported greater improvements in gait velocity compared to traditional exercise, and qualitative data suggests that the program leads to inspiration, anxiety relief, camaraderie, and identity maintenance. The objectives of the study discussed in the paper were to understand the demographics and disease profiles of RSB participants, compare their health-related quality of life, self-efficacy for exercise, apathy level, and self-perceived improvement in motor and non-motor impairments, determine aspects of RSB that contribute to continued participation, and identify barriers to RSB participation.
Methods
Study design
The study employed a 20-minute, 61-item electronic survey administered online to investigate the impact of the Rock Steady Boxing (RSB) program on Parkinson's disease (PD) impairments and quality of life. The participants were recruited at the Northwestern University PD and Movement Disorders Center (NUPDMDC) during regular clinic visits. Recruitment methods included dissemination of an Institutional Review Board (IRB)-approved flyer by clinicians and email distribution to existing NUPDMDC patients through a pre-existing list-serve. Additionally, the survey link was shared on RSB Inc. and the Parkinson Foundation websites. The recruitment period spanned from July 2018 to February 2019, targeting adults aged 18 years or older with physician-diagnosed PD who were aware of RSB. Prior to participation, participants provided electronic consent, with the understanding that their involvement was voluntary and would not impact their clinical care. While care partners could aid in technical aspects of survey completion, they could not consent for or complete the survey on the participants' behalf. Data exclusion criteria included failure to complete all survey questions, and participant information remained anonymous. The study received clearance from the Northwestern University IRB, ensuring ethical compliance.
Survey design and measures
The study utilized an electronic survey by the online survey platform, SurveyMonkey, to collect data from individuals with Parkinson's disease who were aware of the Rock Steady Boxing (RSB) program. The respondents first answered if they had heard of RSB, and only those who replied “yes” were included in the analysis. Those who answered “yes” to the first question were divided into three groups: current RSB participant, Previous participants, and never-participants. The survey included 12 demographic questions (age, sex, employment status, income, and living environment), 13 questions about Parkinson's disease (PD) characteristics (years since diagnosis, use of PD medications, and/or Deep Brain Stimulation), exercise habits, RSB practices, attitudes towards RSB classes, and barriers to RSB participation. Additionally, previous and current RSB participants were asked about the effects of RSB on 4 motor impairments (tremor, medication wearing-off, freezing of gait, and falls) and 8 non-motor impairments (fear of falls, depression, anxiety, sleep, memory loss/cognitive impairments, fatigue, dizziness, and social life).
The survey incorporated three validated patient-reported outcome measures, including the Parkinson's Disease Questionnaire-39 (PDQ-39) to measure health-related quality of life (HRQL), the Self-Efficacy for Exercise Scale (SEE) to measure confidence in continuing exercise, and the Starkstein Apathy Scale (SAS) to measure apathy. The PDQ-39 consisted of 39 items covering 8 domains, with higher scores indicating lower HRQL. The SEE comprised 9 items with higher scores indicating higher self-efficacy for exercise. The SAS included 14 questions, with higher total scores indicating more severe apathy. The survey and outcome measures were used to gather information on the demographics and disease profiles of RSB participants, their health-related quality of life, self-efficacy for exercise, apathy level, and self-perceived improvement in motor and non-motor impairments.
Analysis
The analysis section of the research paper focused on comparing demographic data, participant-reported improvements in Parkinson's disease (PD) impairments, and facilitators and barriers to Rock Steady Boxing (RSB) participation among different groups. The RSB participants (combined previous and current) were compared to never-participants, and current participants were compared to previous participants to assess statistical differences in reported improvements. Additionally, data on facilitators and barriers to RSB participation were compared between current participants, previous participants, and never participants, as well as between all participants (current and previous) and never participants.
The study utilized descriptive statistics, including frequencies and percentages for categorical variables and medians with interquartile range for continuous variables. Statistical tests such as the Wilcoxon Mann Whitney rank sum test, Kruskal-Wallis test, and Chi-squared test were employed to examine the associations between demographic variables, PDQ-39, Self-Efficacy for Exercise (SEE), Snaith-Hamilton Pleasure Scale (SAS), and RSB participation. Bar plots with p-values from the Wilcoxon test were created to illustrate the differences in median scores on PDQ-39, SEE, and SAS between the three groups of current participants, previous participants, and never-participants.
Results
Out of 2054 people who completed the survey, 345 were excluded due to incomplete data, lack of a PD diagnosis, or never having heard of RSB, which left with 1709 respondents who were included in the analysis. 1499 respondents (87.7%) were current or previous RSB participants.
Participant and non-participant demographics
The research paper analyzed the demographics of individuals participating in Rock Steady Boxing (RSB) program compared to those who never participated. The median age of RSB participants was 69, which was statistically different from the median age of never-participants at 68. While 59% of RSB participants were male and 97% were Caucasian, these proportions did not significantly differ from those of never-participants, which were 57% male and 96% Caucasian. However, there were significant differences in other demographic aspects; a higher percentage of RSB participants were retired (76% vs. 66%) and married or partnered (86% vs. 80%) compared to never-participants. Additionally, RSB participants were more likely to be taking Parkinson's disease (PD) medications compared to never-participants. There were no significant differences between the groups in terms of years since PD diagnosis or the use of movement disorders specialists (67% vs. 62% respectively). Overall, the study highlighted demographic variations between RSB participants and never-participants, indicating differences in age, employment, marital status, and medication use, while there were no differences in PD diagnosis duration or specialist usage.
Objective measures
The research paper stated current participants had higher PDQ-39 scores and better SEE scores compared to previous and never-participants. This results indicate better HRQL and exercise self-efficacy. However, SAS scores did not significantly differ between three groups.
Self-reported symptom improvement
The research paper on the impact of Rock Steady Boxing (RSB) program on Parkinson's disease (PD) impairments and quality of life found that when current RSB participants were asked about the effect of the program on their impairments, the majority reported improvement in non-motor impairments such as social life (70.3%), fatigue (63.3%), fear of falling (61.9%), depression (59.9%), and anxiety (58.5%). Additionally, a notable proportion reported improvement in select motor impairments including tremor (43.7%), falls (44.8%), freezing of gait (44.2%), and medication wearing-off (26.8%). A comparison between current and previous participants' responses showed a statistically significant difference only in the percentage reporting improvement in fatigue and lightheadedness/dizziness.
RSB participation: motivation and barriers
The research paper's section on RSB participation: motivation and barriers discusses factors influencing participants' involvement in the Rock Steady Boxing (RSB) program and the reasons behind non-participation. The study found that participants and never-participants learned about RSB from various sources, including physicians, friends or relatives, support groups, news, websites, and pamphlets. The main motivators for participating in RSB were the perception of its PD-specific nature and the group structure. RSB participants reported engaging in more hours of moderate and vigorous exercise per week compared to never-participants. Among previous participants, reasons for discontinuation included illness/hospitalization and inconvenient RSB location, while high cost was less cited as a barrier. On the other hand, never-participants cited difficult access to RSB sites and high cost as the main reasons for non-participation. However, the majority of both never-participants and current participants relied on themselves or others for transportation. The monthly cost for RSB participation was similar for previous and current participants. Few never-participants cited exercise-related variables as reasons for non-participation, and the majority of participants felt that the benefits of RSB were worth the cost, displaying a high willingness to recommend RSB to others with PD.
Discussion
The discussion section of the research paper presents the findings of the largest survey of Rock Steady Boxing (RSB) participants, indicating high satisfaction and self-reported benefits on quality of life, depression, anxiety, and fatigue. The study found that previous participants who stopped attending RSB did so largely due to illness or hospitalization, rather than dissatisfaction. RSB participants reported improvement in non-motor PD impairments, such as fatigue, anxiety, depression, and fear of falling, as well as improvement in social life. The survey also revealed that RSB may address difficult-to-treat non-motor symptoms of PD, and its potential in decreasing activity limitations and improving HRQL. Participants recommended RSB, with 94-99% recommending the program, including those who no longer participate. The study highlighted the unprecedented level of self-reported fatigue improvement (63%) by RSB participants, and the potential for RSB as an adjunct intervention to address nonmotor impairments. Additionally, the survey identified a positive change in social life associated with RSB participation, adding to the limited literature on exercise's impact on this domain of HRQL. It also emphasized the importance of exercise for HRQL in PD, with consistent exercisers showing a smaller decline in HRQL over time than non-exercisers. In conclusion, the study suggests the need for future randomized controlled trials to investigate the effect of RSB on specific nonmotor symptoms of PD and its potential in improving HRQL and decreasing activity limitations.
Limitations
The limitations of the study include the use of self-reported, cross-sectional data, which limits the ability to draw causal conclusions about the impact of Rock Steady Boxing (RSB) on Parkinson's disease (PD) symptoms. The lack of objective measures of disease severity and motor impairment, as well as the reliance on participant recall without controlling for potential cognitive impairment, further restricts generalizability. Additionally, the study does not account for concurrent medication or non-pharmacologic management changes that could have affected symptom improvement. Recruitment bias through the use of Parkinson's foundation and RSB Headquarters websites may have led to a respondent bias, with the majority of participants being male, Caucasian, and educated above a high school degree, raising questions about the representativeness of the sample. These limitations challenge the generalizability of recommending RSB as a mode of exercise for all people with Parkinson's (PwP). The study emphasizes the need for further research and analysis of RSB participants' demographics to gain a better understanding of the participant profile and to address the limitations identified.
Conclusions
The research paper concludes that regular exercise is crucial for Parkinson's disease (PD) care, as patients who do not exercise regularly tend to experience worse quality of life, physical function, and disease progression. Despite the increasing awareness among healthcare providers about recommending exercise for PD patients, there is still uncertainty about the specific method, quantity, and type of exercise intervention to prescribe for different PD impairments. The study, which is the largest analysis of Rock Steady Boxing (RSB) use and its effects on PD impairments, aims to provide insights for healthcare providers and the Movement Disorder community regarding recommendations for exercise participation for PD patients.
The findings suggest that RSB is associated with reduced fatigue, depression, anxiety, and fear of falling, based on patient-reported data. Additionally, RSB participation is linked with better health-related quality of life (HRQL) and self-efficacy for exercise (SEE). The paper emphasizes that while these associations are not definitively causative, it is important for providers and patients to be aware of the potential benefits of RSB participation. The study's conclusions highlight the significance of RSB in improving various aspects of PD impairments and encourage clinicians to consider these findings when counseling PD patients about exercise.
