What is this research about? It is well known that people who live with long-term physical conditions like multiple sclerosis or muscular dystrophy may experience physical problems, such as muscle weakness or trouble balancing, as a direct result of their medical condition. However, we know people experience many problems that may not be directly caused by their disability, but are still related to it. These problems include things like chronic pain, fatigue, depression, worsening muscle spasms, or chronic infections. These kinds of problems are called “secondary” or “secondary conditions.” In fact, sometimes “secondary” problems can be even more difficult to manage than the original disability itself. However, these “secondary” problems often don’t get as much attention from health care providers or coverage from health insurance companies.
What did the researchers do? We asked a large group of people living with spinal cord injury, multiple sclerosis, muscular dystrophy, and post-polio syndrome about their “secondary” problems. About 2,000 people from all over the United States answered a survey for us. We looked at how people’s answers on these “secondary” problems were related to one another. We also looked at how these “secondary” problems impacted people’s ability to live their lives to its fullest. Lastly, we looked to see if there were any differences across age groups (young (under 45 years), middle-aged (45 – 54 years and 55 – 64 years), and older ages (65 or older).
What did the researchers find? As expected, we found that physical problems, such as muscle weakness, trouble speaking, and nerve problems created a big impact in daily life for people aging with a physical disability. However, we also found that “secondary” problems like pain, depression, fatigue and trouble sleeping were very significant problems as well. These “secondary” issues created almost as much trouble in daily life as did the physical problems. In fact, one of these problems, chronic pain, created even more interference in daily life than did certain medical diagnoses, including diabetes, arthritis, and hypertension. We also looked at how these problems change with age, and found that many symptoms, including depression, pain, and fatigue, were at their worst for middle-aged people.
How can you use this research? The more you know, the more you can do. We hope learning about “secondary” problems will help you discuss them with your doctor as well as your family and friends. We invite you to check out our factsheets on “secondary” problems and bring these to your next doctor’s appointment to discuss what problem is the most concerning to you. Finally, we believe middle-age is a particularly difficult period – we advise you to work extra hard to stay physically active, socially connected and emotionally strong.
What you need to know:
Original study: Molton IR, Terrill AL, Smith AE, et al. Modeling Secondary Health Conditions in Adults Aging With Physical Disability. J Aging Health. 2014.
About the researcher(s): Ivan Molton is an Assistant Professor in the Department of Rehabilitation Medicine at the University of Washington, and the director of a federally funded research and training center looking at aging and physical disabilities.