Maintaining a good life balance is a huge task. The demands of daily life from family, to career ambitions, to carving out your own leisure time, are made even more complicated when you have a neuromuscular condition. You have to think about managing your energy, employing carers, taking medication…the list goes on and on. That’s why it’s crucial that life balance is prioritised when it comes to taking care of your needs.
These additional demands on living a personally fulfilling life are noted in a study by Leenders et al. (2023). The study is a collaboration between several departments and institutions specialising in rehabilitation, brain conditions and health, with the aim of testing tools that evaluate life balance in people with neuromuscular conditions. With so many additional factors to consider, the tools used to measure life balance need to take into account the experiences of people with neuromuscular conditions, making sure they produce accurate results. This process is called ‘test-retest reliability’.
This study examined three tools used to measure life balance: the Activity Calculator (AC); the Activity Card Sort, and the Occupational Balance Questionnaire. These tools were used to assess qualities of activities, which are a crucial part of maintaining a good life balance. These qualities ranged from the amount of time spent doing an activity; the number of activities; what the activity meant to the participant, and how much energy it took for the participant to perform the activity. Each tool is described as follows:
- The Activity Calculator records daily activities, and how long they last. Participants are interviewed, and asked to assign ‘weight’ to how much energy half an hour of the activity takes to perform.
- The Activity Card Sort assesses activities done both in the past and present. Participants are presented with photo cards of people doing various activities, and asked to describe how often they do each one.
- The Occupational Balance Questionnaire measures how participants feel about their life balance. The questionnaire asks eleven questions about time, energy, daily activities and level of satisfaction, with participants ranking their statements between ‘Strongly Disagree’, ‘Disagree’, ‘Agree’, and ‘Strongly Agree.’
These tools were not developed with neuromuscular conditions in mind, but were designed to apply to a broad range of conditions which impact life balance. That is why testing the tools to make sure they produce reliable results is important: it ensures that misleading results aren’t produced, and that effective support and treatment can be given to those who need it most. For this test, 50 participants were recruited with the support of the Dutch neuromuscular condition patient organisation, Spierziekten Nederland. 25 of the participants had Facioscapulohumeral Muscular Dystrophy (FSHD), and the other 25 had mitochondrial myopathy (MM): both neuromuscular conditions where chronic fatigue is a common symptom. All of the participants completed an email questionnaire detailing demographic information (such as age and gender) and clinical diagnosis. Participants who had additional conditions which could cause chronic fatigue were not included in the results.
The study took place over three weeks, with all of the research assistants involved being occupational therapists. Participants were asked to record their days in activity diaries before being interviewed at home (or another location chosen by them). They were also asked for their responses to a tool called the Checklist Individual Strength, or CIS-Fatigue, which assesses for chronic fatigue and related conditions. The Activity Calculator, Activity Card Sort and Occupational Balance Questionnaire were all given to participants twice to assess the test-retest reliability. By assessing participant experiences twice at different, close-together times, researchers were able to see if similar results were reported, indicating that the test was reliable (without being affected by changes in health over time).
Leenders et al. (2023) found that all three tools were consistently reliable, with the Activity Calculator and Occupational Balance Questionnaire having ‘good reliability’, and the Activity Card Sort having ‘excellent reliability’. These results were calculated using something called the ‘intraclass correlation coefficient’, or ICC, which measures similarities between sets of data. As all tools scored .76 and above on their ICC, they all had good to excellent test-retest reliability. This means these tools are effective in measuring the experiences of individuals with neuromuscular conditions.
Studies like these illustrate the importance of ensuring that diagnostic tools actually serve the communities they’re assessing. This can only happen when research is informed by those living with the conditions being examined, like the participants in this study. So the next time you have the opportunity to give feedback about your own life balance, consider sharing your experience. You could make a world of difference for others with your condition.
Too often, the tools which are used to inform the treatment and support of people with neuromuscular conditions are hidden behind complicated language and statistics. Part of the work we do at Pathfinders involves demystifying research which affects the neuromuscular community. Do you have a research paper or topic you’d like to see covered? If so, get in contact with us at quinn@pathfindersalliance.org.uk.
Written by Quinn Clark
References:
J. M. P. Leenders, A. C. H. Geurts, E. M. J. Steultjens, T. L. Packer & E. H. C. Cup (2023): Test-retest reliability of three life balance measures in people with neuromuscular disease: the activity card sort-NL, the activity calculator, and the occupational balance questionnaire, Disability and Rehabilitation, DOI: 10.1080/09638288.2023.2213482