Long-term follow-up of telehealth-enabled behavioral treatment for challenging behaviors in boys with fragile X syndrome.
Telehealth parent FCT keeps boys with fragile X calmer for three years, and a single Zoom booster quickly fixes any slip.
01Research in Context
What this study did
Hall et al. (2022) checked if telehealth FCT still works three years later. They worked with boys who have fragile X syndrome and lots of irritability. Parents learned the steps on Zoom, then coached their kids at home.
Half the families got FCT. The other half got usual care. The team scored irritability and social withdrawal at baseline, post, and 36 months. When problem behavior crept back, they gave a one-hour Zoom booster.
What they found
Three years later the FCT group was still calmer and more social than the usual-care group. Four of the six boys who had a resurgence dropped back to low levels after a single booster session.
No extra clinic visits were needed. Parents kept the skills they learned on video.
How this fits with other research
Martin et al. (1997) first showed FCT can last 27 months in family homes. Hall adds telehealth and an extra year, proving distance coaching can match in-person durability.
Ryan (2017) saw only small, short-lived gains in parent interaction quality with telehealth FCT. Hall focused on child behavior, not parent style, and found strong, lasting change. The studies do not clash—they simply tracked different outcomes.
Suess et al. (2020) taught FCT in a ‘clean’ context to cut resurgence recovery time. Hall shows a one-hour booster does the same trick years later, giving clinicians two tools: pick the right context up front, or Zoom-boost when needed.
Why it matters
You can tell funders and families that one telehealth FCT package can protect boys with fragile X from irritability for years. Build a booster plan into the discharge summary—one quick Zoom call can nip relapse in the bud without new assessments or travel.
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Add a 60-minute Zoom booster slot to your discharge plan and schedule it the moment parents report resurgence.
02At a glance
03Original abstract
A significant proportion of boys with fragile X syndrome (FXS), the most common known genetic cause of intellectual disability, exhibit challenging behaviors such as aggression and self-injury that can cause significant distress to families. Recent evidence suggests that coaching caregivers to implement functional communication training (FCT) with their child via telehealth can help to ameliorate these behaviors in FXS. In the present study, we followed families who had participated in our previous randomized controlled trial of FCT to evaluate the longer-term effects of FCT on challenging behaviors in this population. In study 1, follow-up emails, phone calls, text messages, and letters were sent to caregivers of 48 boys with FXS who had completed our previous study conducted between 2016 and 2019. The main outcome measures administered at follow-up were the Aberrant Behavior Checklist–Community (ABC-C) and the Parenting Stress Index, 4th Edition (PSI-4). In study 2, families who had received FCT treatment but whose child exhibited challenging behaviors daily at follow-up received a 1-h parent training booster session to determine whether the intervention effect could be recovered. Sixteen (66.7%) of 24 families who had received FCT treatment and 18 (75.0%) of 24 families who had received treatment as usual were traced and consented between March and August 2021. The mean follow-up time was 3.1 years (range, 1.4 to 4.2 years). Longitudinal mixed effects analyses indicated that boys who had received FCT were more likely to show improvements on the irritability and lethargy/social withdrawal subscales of the ABC-C over the follow-up interval compared to boys who had continued with treatment as usual. Four of the six boys who had received the booster parent training session via telehealth were reported to exhibit fewer forms of challenging behavior at a 4-week follow-up. Empowering parents to implement behavior analytic treatments with their child in their own home can have durable effects on maintaining low levels of challenging behaviors in boys with FXS. These data further support the need to implement parent-mediated interventions for challenging behaviors in this population at an early age. ClinicalTrials.gov, NCT03510156. Registered 27 April 2018
Journal of Neurodevelopmental Disorders, 2022 · doi:10.1186/s11689-022-09463-9