A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome

Abstract

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 one hour per day of moderate-to-vigorous physical activity (MVPA). 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.

Health behaviour of women with Turner Syndrome

“…While women with TS were as active as women from the SHS, both groups adhered poorly to recommendations for the healthy adult population for Switzerland, 13 from the CDC 14 and the WHO 15 . Our results are similar to those from a study of the University of Colorado, USA, where only 19% of girls with TS adhered to the recommendations of 1 h per day of moderate‐to‐vigorous physical activity 10 . A study from Poland found that girls with TS aged 10–18 years had a lower performance in fitness tests than healthy controls 16 .…”

“…15 Our results are similar to those from a study of the University of Colorado, USA, where only 19% of girls with TS adhered to the recommendations of 1 h per day of moderate-tovigorous physical activity. 10 A study from Poland found that girls with TS aged 10-18 years had a lower performance in fitness tests than healthy controls. 16 Women with TS are often smaller, heavier and have delayed puberty compared with their peers and have to cope with medical and psychosocial difficulties, which might Persons with chronic morbidities such as cardiovascular disease are at risk of being physically inactive, which leads to a cycle of deconditioning.…”

“…5,6 In studies from Sweden, women with TS smoked less and had lower physical activity than a female random population sample. [7][8][9] In a recent single-centre study from the University of Colorado, USA, only one in five girls with TS adhered to physical activity recommendations, 10 and Danish TS women reported less physical activity than healthy controls. 2 We aimed to assess smoking status, alcohol consumption and physical activity in women with TS aged ≥18 years living in Switzerland.…”

Piloting the use of global health measures in a Down syndrome clinic

“…These PROMIS® global health measures have been validated in the general population (Forrest et al, 2014(Forrest et al, , 2016. PROMIS® measures have been used in arthrogryposis, Turner syndrome and neurologic conditions including epilepsy and Parkinson's disease (Shulman et al, 2019;Thompson et al, 2020;Wall et al, 2020).…”

Promoting healthy behaviour in Turner syndrome—the challenge begins in childhood

“…A US study by Thompson et al found that only four of 21 girls aged 12-21 years met the target of one hour per day. 8 Milde and colleagues from Poland compared 184 girls with Turner syndrome aged 10-18 years with 280 controls and found that while the patient group performed better at some tasks, differences in body habitus rendered other motor tasks more difficult. 9 Clearly, much work is needed in helping define activity guidelines which are appropriate for young people with Turner syndrome and which can be usefully documented annually in the manner that we are suggesting for adult patients.…”