Supervised exercise sessions at home are an effective strategy to improve the levels of physical activity and walking capacity among women with Prader-Willi syndrome (PWS), a new study suggests.
The research, “Increasing physical activity in adult women with Prader–Willi syndrome: A transferability study,” was published in the Journal of Applied Research in Intellectual Disabilities.
People with PWS typically experience hyperphagia (excessive food craving), hypotonia (low muscle tone), weight gain, decreased motor skills, and insufficient physical activity. As such, they are prone to develop obesity with severe complications, such as cardiac or respiratory failure.
Physical activity often is part of behavioral approaches to manage PWS. In line with current guidelines, obese adults are advised to progressively reach a minimum of 150 minutes of moderate‐intensity physical activity per week.
Yet, a recent study using accelerometers (a device used to measure acceleration) found that only 15% of adult women with PWS met these recommendations.
Two case reports suggested that a home-based exercise training program supervised by an instructor is feasible and well-accepted by children with PWS. Improved muscle function and decreased body mass were seen with a similar strategy in youngsters with PWS. However, studies of the effectiveness of such a program are still lacking in in affected adults.
Researchers from France assessed physical activity in adults with PWD and evaluated whether home-based exercise would be possible in those patients (NCT03673813).
First, they compared physical activity between 10 women with PWS and 20 obese women not related to any disease.
Results showed that women with PWS had lower levels of physical activity and spent more time being sedentary (inactive) compared to the control group. As measured with an accelerometer, physical activity was 37% lower in the PWS group than in the non-PWS control group.
In line with previously reported data, sedentary time accounted for almost half of the time in women with PWS and was significantly higher than in the control group.
Also, participants with PWS had more prolonged, uninterrupted sedentary periods compared to the control group, as indicated by more frequent intervals of 30 minutes or longer.
Then the group with PWS participated in a 16-week exercise program with two sessions per week conducted at home and supervised by a trained physical activity instructor. Exercise combined endurance and muscle-strengthening activities of moderate intensity.
Participation was very good, as the median attendance to the exercise sessions reached 100%.
Compared to baseline levels, women with PWS showed an increase in moderate-to-vigorous physical activity and walking capacity (assessed with the 6‐minute walk test) after the program. However, no significant changes were found in body composition, eating behavior and quality of life, although a physical component — measured with a 12-item short-form questionnaire — tended to improve.
Instructors reported having to adapt to the patients’ psychological and cognitive disorders, as well as to their physical limitations, fatigue, and lack of motivation.
“Supervised home-based exercise sessions are an effective strategy to improve PA [physical activity] in women with PWS,” the researchers wrote.
“The data also suggest the need to involve experienced PA instructors with a well-developed capacity to adapt exercise [programs] and make the sessions enjoyable with these patients,” they added.