Aging and Quality of Life Survey

A hand of someone filling out one of our survey.What is this research about?

People living and growing older with a long-term physical disability are more likely to struggle with secondary conditions and  access to health care and rehabilitation care.

We hope to learn more about secondary conditions:

  • Which secondary conditions have the most impact on people’s lives?
  • Is there a group of people who experience worse secondary conditions than others?
  • Do secondary conditions get worse with age? Or is there a time when secondary conditions are at their worst?

We hope to learn more about accessing health care and rehabilitation care:

  • What helps someone get better care?
  • What kinds of problems do people have when looking for care?

What does this study involve?

In 2009, we began following about 2,000 adults aging with multiple sclerosis (MS), muscular dystrophy (MD), post-polio syndrome (PPS) and spinal cord injury (SCI) living in the US. Over the last 5 years, the people in our survey have completed 2 to 4 surveys total.

Over the next 5 years, we plan to collect about 3 more surveys.

  • Our surveys are paper and sent out and returned in the mail.
  • Each surveys takes about 45 minutes to fill out.
  • Participants will get $25 for each survey filled out and returned to us.
  • The survey asks many types of questions about secondary conditions, quality of life, life purpose, happiness, well-being, and coping. Also questions about health care, health care providers, and barriers to getting the health care services you need. 

What did the researchers find? (or what have we found so far?)

Our survey newsletters highlight some of our findings:

Also, summaries of our findings are updated on our blog as we publish or present new results. 

How do I learn more about participating in this study?

We are not enrolling new participants at this time. Please check back for updates!

About the researcher:

Mark Jensen, PhD is a rehabilitation psychologist who has more than 20 years of experience working with people living and aging with MS, MD, SCI, and other neurological conditions and injuries. Dr. Jensen is also known world-wide for his work in treating chronic pain with hypnosis.