A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome
Open accessAbstract
Women with Turner syndrome (TS) have a high morbidity from both medical and psychological conditions with a negative impact on quality of life (QoL). Physical activity is a modifiable behavior shown to reduce risk for these chronic medical and mental health conditions and enhance QoL in other populations. Limited research suggests that adolescents and women with TS are less likely to engage in or enjoy physical activity than peers. This mixed methods study aimed to document physical activity levels in a sample of youth with TS and explore how factors unique to TS contribute to and are affected by physical activity. A cross-sectional sample of 21 girls (12-21 years) with TS and their parents (n = 21) completed standardized questionnaires to quantify habitual physical activity (3-day physical activity recall) and QoL (PROMIS) and participated in individual interviews focused on their experience with physical activity. Quantitative and qualitative results were synthesized using a phenomenological mixed methods approach. Results indicate that our sample engaged in less physical activity than peers and only 19% met recommendations for 1 hr per day of moderate-to-vigorous physical activity. Parents reported significant problems with peer relationships and psychological stress, and peer relationships scores correlated with physical activity. Reported barriers to physical activity included physical and psychosocial complications related to TS as well as unique developmental considerations specific to adolescence. Quantitative and qualitative results supported that structured fitness options embedded into routines enhanced activity levels. Results were compiled into specific recommendations for clinical care and areas of future research.
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In recent surveys, a sedentary lifestyle was reported by more than half of children and adults with TS and was associated with arterial hypertension.
“In recent surveys, a sedentary lifestyle was reported by more than half of children and adults with TS and was associated with arterial hypertension.496-498”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [497]
The available literature shows that girls and women with TS do not meet current general recommendations for physical activity, which is concerning because less physical activity has been associated with excess weight gain and hypertension in adults with TS.
“The available literature shows that girls and women with TS do not meet current general recommendations for physical activity,357,455,496-498 which is concerning because less physical activity has been associated with excess weight gain and hypertension in adults with TS.”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [497]
A mixed methods study in adolescents found individuals with TS may have unique factors, such as psychosocial complications, impacting physical activity engagement that warrant tailored approaches to achieve best outcomes.
“A mixed methods study in adolescents found individuals with TS may have unique factors, such as psychosocial complications, impacting physical activity engagement that warrant tailored approaches to achieve best outcomes.497”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [497]
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Clinical practice guidelines for the care of girls and women with Turner syndrome.
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- Authors
- Thompson, T., Zieba, B., Howell, S., Karakash, W., & Davis, S.
- Affiliations
- Children's Hospital Colorado (US)
- Corresponding author
- Davis, Shanlee
- Venue
- American Journal of Medical Genetics Part A
- Publisher
- Wiley
- Published
- 2019-12-08
- Volume
- 182
- Issue
- 2
- Pages
- 386-396
- ISSN
- 1552-4825 (ISSN-L)
- 1552-4833
- PMC
- PMC7413634
- OpenAlex
- W2995021637
- Cited by
- 19
- References
- 41
- Citations by year
- 2025: 1 · 2024: 3 · 2023: 2 · 2022: 3 · 2021: 9
- FWCI
- 2.06
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Locations
- American Journal of Medical Genetics Part A (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Center for Child Health and Development (K23HD092588‐01)
- Topics
- Health Sciences › Medicine › Physiology › Physical Activity and Health
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Social Sciences › Life-span and Life-course Studies › Sports and Physical Education Studies
- Keywords
- Turner syndrome, physical activity, quality of life, adolescents, peer relationships, psychological stress, barriers to physical activity, physical activity guidelines, PROMIS, parent-reported outcomes
- MeSH terms
- Adolescent, Adult, Mental Disorders, Child, Cross-Sectional Studies, Female, Health Status, Humans, Parents, Quality of Life, Surveys and Questionnaires, Turner Syndrome, Exercise, Young Adult
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