Turner Syndrome Foundation
This post summarizes an article by Dr. Thalia Thompson, et al. titled “A Mixed-Methods Study of Physical Activity and Quality of Life in Adolescents with Turner Syndrome.” It explores how Turner Syndrome (TS) affects young people’s ability to exercise, given their TS-related health challenges.
About the Study
Purpose
The two purposes of this study were to:
- track the level of exercise of 21 teens with TS, and
- explore how TS impacts how much they exercise.
Previous studies showed that teens with TS often don’t meet the amount of exercise recommended by national and international health organizations to stay healthy (at least an hour of moderate to vigorous exercise daily). Teens/young adults with TS also said that they didn’t enjoy exercising, so Thompson and her colleagues set out to discover why. The study was conducted from 2017 to 2018.
Researchers
The following researchers, all associated with the University of Colorado’s Department of Pediatrics and Children’s Hospital Colorado’s eXtraOrdinary Kids Program, both in Aurora. conducted this study:
- Dr. Talia Thompson, PhD, NCSP
- Briana Zieba, MS, LCGC”
- Susan Howell, MS, CGC, MBA
- William Karakash, medical assistant and incoming medical student**
- Dr. Shanlee Davis, MD, MS
* Zieba also worked for the University of Nebraska Medical Center’s Department of Genetic Medicine, in Omaha, during this project.
** Karakash also worked for the University of North Carolina at Chapel Hill’s Department of Exercise and Sport Science during this project.
Funders
The following organizations funded this project:
- Turner Syndrome Global Alliance (primary funder),
- TS Colorado and the eXtraOrdinary Kids TS clinic and research team, and
- National Institutes of Health (NIH) Eunice Kennedy Shriver National Institute of Child Health and Human Development;=’s (NICHD) Career Development Award (Dr. Davis).
Sample & Methods
The study’s sample had 21 participants with TS, aged 13 to 21. They applied themselves to be part of the study. This was a mixed-methods study, meaning that the researchers used qualitative (non-mathematical) and quantitative (statistical) research.
- The quantitative research was a questionnaire aimed at finding out how much the teens exercised during a three-day period and how intense it was. Their parents completed another version of the questionnaire and were also interviewed.
- The qualitative portion had a short interview with eight primary questions and some follow-up questions for the participants about their thoughts and feelings about exercise and TS.
Limitations
In the research article, Thompson and her colleagues noted two main limitations to their study:
- The sample size (21) was so small that it may be hard to apply the results to the larger population of those with TS.
- The participants self-selected to be part of the study. Knowing that the study had an exercise component probably caused other participants not to participate in this study. Therefore, the study’s results cannot be applied as well as other studies to the wider population of individuals with TS.
Findings
Quantitative
The study found that, of the participants:
- 29% reported being currently or recently involved in sports organizations,
- 19% did an average of an hour or more of moderate to vigorous exercise daily, and
- 10% did over an hour of exercise daily.
Qualitative
Three themes emerged from the study’s 600 analyzed interview responses:
- There were differences in motivation for physical activity between the participants and their parents. The participants valued exercise as a way to spend time with their friends/loved ones. Parents valued the overall health benefits of exercise.
- TS created many barriers to the participants’ wanting to exercise more. They mainly described short stature, fatigue, motor skill challenges, and anxiety as reasons why they didn’t like to exercise.
- Structured fitness options (e.g., scheduled activities, group exercise, classes, team sports) increased the value of exercise for both the participants and their parents. Both groups agreed that adding structure encouraged the teens to exercise more.
Comparison of Results from Other Studies
This study’s finding that less than 20% of teens/young adults with TS exercise the recommended amount mirrored another study with a similar statistic (Sienkiewicz-Dianzenza et al., 2006). This study also had similar findings to a Norwegian study that reported that individuals with TS were likely to enjoy exercise less as children as compared to the average child (Naess, Bahr, & Gravholt, 2010).
This study’s finding that TS negatively impacted participants’ ability to exercise and live the healthy lives they wanted to mirrored another study’s findings. In that study, 16 teens with TS described that their quality of life was affected by the many challenges that TS created for them in their daily lives, including how it affected their bodies (Amedro et al., 2017).
The only study that seemed to contradict this study’s findings was based on a sample of individuals with TS attending summer camp, which showed much higher rates of exercise than this study (Sienkiewicz-Dianzenza et al., 2011). Thompson noted that this contradicting study’s result may be because of the summer camp setting.
Takeaways
For Parents
- Implementing exercise into your teen’s/young adult’s daily routine is important, since scheduling exercise makes it easier for them to enjoy and actually complete exercise. Scheduled fitness classes, joining a team for a sport that is TS-friendly, or including more active chores like walking a dog are ways to help develop an exercise/fitness schedule.
- Help them keep track of their exercise and their emotions while exercising, by having them write in a exercise journal.
- Help your teen/young adult set small, achievable goals related to their physical activity of choice.
- Whenever your teen/young adult needs a boost of motivation or accomplishes a goal, use positive reinforcement to push them forward.
- Consider having your teen/young adult become a member of an online exercise community. This can help motivate them to be active and make new friends.
- If your teen/young adult becomes a member of a sports team, don’t over-emphasize the sport’s competitive aspect. This way, they can stay focused on the overall benefits of exercise in sports with less pressure.
- Be proactive about bringing up exercise with your healthcare providers. That way, you can both be clear on any limits and on appropriate goals for your teen/young adult.
For Health Care Providers, Educators, and Therapists
- Provide families and schools with a letter stating clear and specific individualized recommendations for exercise.
- Physical education teachers and school counselors should play an active role in the school’s support plans for young people with TS. These support plans include IEPs and 504 plans. Helping young people with TS be physically, mentally, and socially healthy can help them live happier lives in the future.
- Understand that teens/young adults with TS often do not tell people about their physical, mental, and social health concerns. Emphasize that your office or classroom is a safe space where they can talk about any issues they have.
- Therapists and educators should start occupational therapy==especially visual-spatial, planning, and motor skill therapy==early. They can help reduce barriers that can prevent teens/young adults from exercising later on. Make this therapy ongoing so these skills won’t be lost later in life.
- Screen for and treat mental health conditions, including anxiety and social isolation, so that they don’t interfere with a teen’s/young adult’s ability to exercise and live a healthy lifestyle.
Conclusion
Dr. Thompson and her colleagues’ study explored the challenges around exercise and young people with TS and why they might exercise less than the average person. This work emphasized the importance of treating TS’s mental & social health effects as part of an overall healthy lifestyle, as they can affect a young person’s ability to exercise. Dr. Thompson and her colleagues’ work also fills a critical research gap. To date, little research has focused on treating those with TS, except those who need hormone replacement therapy (HRT). Hopefully, with these takeaways, you can help your child/loved one with TS live a happier and healthier life.
This article was written by Catherine Martin, a volunteer TSF blog writer. Edited by Liz Rivera, blog content coordinator, and Susan Herman, volunteer TSF blog editor.
