Study identifies physical therapy priorities in Rett syndrome
They include gross motor skills, multidisciplinary teamwork, parents in lead roles
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Parents and physical therapists caring for people with Rett syndrome named gross motor skills and musculoskeletal function as the main physical therapy priorities to support body stability and movement, according to a study.
The Dutch study, which used questionnaires and interviews, also described factors that help or hinder physical therapy, including multidisciplinary teamwork, parents’ roles, limited knowledge about the condition, and uncertainty about the future.
The study, “Priorities, facilitators and barriers regarding physical therapy for individuals with rett syndrome: perspectives of parents, caregivers and physical therapists,” was published in Developmental Neurorehabilitation.
Communication, motor abilities seen as top priorities
Rett syndrome is a rare genetic disorder that primarily affects girls. It’s marked by developmental regression, motor skill loss, and communication difficulties.
Physical therapy is considered key for individuals living with Rett, but providing such therapy can be challenging. Abilities and needs vary between individuals, and communication limitations make it hard to understand patients’ needs. Moreover, parents, therapists, and doctors may have different goals, and evidence for which physical therapy intervention may be effective is limited.
Therefore, scientists in the Netherlands asked parents, physical therapists, and professional caregivers to describe priorities, facilitators, and barriers in physical therapy for individuals with Rett syndrome.
First, 12 parents, 15 physical therapists, and 15 professional caregivers completed an online questionnaire with multiple-choice and open-ended questions. Rett patients, all girls/women, ranged in age from 4 to 25 years. The team then interviewed seven parents and five physical therapists.
The research identified two priorities across all groups: communication and education, with an emphasis on communicative and cognitive skills, and motor abilities and physical well-being. Participants considered both equally important, with the aim being increased quality of life and independence.
Regarding barriers, parents and therapists described a potential underestimation of cognitive abilities, linked to the communication limitations of individuals with Rett. They also described the need to balance working toward goals with patients’ energy levels.
One parent explained: “Sometimes there is a maximum to what you can do. That applies to everything, including physical activities, so if you would give her 4 hours of therapy per day, she might as well collapse after one hour because it’s just too much.”
Walking viewed as essential by parents, physical therapists
Parents and physical therapists prioritized maintaining or improving gross and fine motor skills and addressing musculoskeletal impairments to maintain functional abilities and prevent pain and further complications. Walking was seen as essential because it relates to independence, overall physical fitness, alertness, and social interaction.
For individuals with low overall motor functioning, therapists focus on the time spent standing and walking during the day. Participants prioritized gross motor skills over fine motor skills, though fine motor skills are still necessary for hand function.
Physical therapists said sessions are less effective when the individual is not “fit” at the planned time. This can be due to low energy after poor sleep or feeding difficulties, sensory overload, or being understimulated. Participants said a flexible schedule would be ideal.
One physical therapist described checking in first: “How is she doing? Does it make sense to get her now or not?”
Parents and professional caregivers also singled out the physical strength needed to care for or exercise with the individual as their weight and height increase due to growth. This sometimes leads to daily exercise being stopped.
Physical therapists recognized parents as valuable team members
Collaboration with other healthcare professionals, medical doctors, and parents was described as a priority and a facilitator for optimal care and development. Both parents and therapists frequently emphasized a need for a multidisciplinary team, including physical and speech therapists, a behavioral specialist, and professional caregivers or teachers.
At the same time, physical therapists recognized parents as valuable team members, especially when parents exercise with their child at home. Yet, parents described home exercise as both a facilitator and a barrier.
“Everything at home already requires a lot of energy. I just hope they use their time at the day care center. So you can just be a parent at home,” one parent said.
Facilitators included healthcare professionals who are open-minded, honest, proactive, and willing to acknowledge their uncertainties. Parents valued clear communication, accessibility, and the opportunity to contribute their input. Poor communication was a barrier. Still, participants said that most differences in opinion between parents and professionals are resolvable.
For all healthcare professionals involved, parents and therapists described experience with and knowledge of Rett as key facilitators. Parents reported that many professionals have limited understanding of Rett because it’s rare, so they often advocate for their child.
Physical therapists, and all healthcare professionals, should strive toward building a therapeutic environment within a strong therapeutic alliance with parents.
Some therapists described parents as very focused on reaching their daughter’s maximum potential, which might result in overstimulation. Some parents said their daughter should exercise mainly at school or daycare and relax at home. Parents also described emotions ranging from sadness and guilt to contentment and pride.
Participants also described fluctuating abilities, such as walking independently on some days and having difficulty on others, especially during episodes of sleep problems, bowel issues, or epilepsy.
“The most consistent thing about Rett is that it’s inconsistent, that’s absolutely the biggest truth in the world,” one parent said.
Parents also reported uncertainty about additional health problems, regression, regaining skills, the future effects of adolescence, adulthood, epilepsy, and which therapies are most effective.
“This study offers a parents’ and physical therapists’ view on priorities, facilitators and barriers for [physical therapy] in Rett syndrome,” the researchers wrote. “Physical therapists, and all healthcare professionals, should strive toward building a therapeutic environment within a strong therapeutic alliance with parents.”
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