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| Preliminary Evaluations of Evidence-Based Interventions for Prader-Willi Syndrome Related Behaviors |
| Saturday, May 25, 2024 |
| 10:00 AM–10:50 AM |
| Convention Center, 100 Level, 103 A |
| Area: DDA/DEV; Domain: Applied Research |
| Chair: Fatima Ahmed (The Chicago School) |
| Abstract: This symposium will provide an overview of current applied research focused on supporting individuals with Prader-Willi syndrome (PWS) and their caregivers. The presentation will begin with a brief review of the literature and will continue with an overview of a behavior analytic treatment package for skin picking, a common self-injurious behavior demonstrated by individuals with PWS (Bedard et al., 2023b). Following development, the Skin Picking Treatment Protocol was assessed in a pilot study with 12 caregiver-child dyads. The results of the pilot study indicate that the intervention resulted in significant changes in caregiver ratings of wound severity and photographic evidence of wounds (Bedard et al., 2023b). The symposium will conclude with the presentation of two studies evaluating PWS Smart-Start, a remote behavior-analytic caregiver training program for caregivers of children with PWS. Study one assessed the feasibility and preliminary efficacy, and results indicated that the intervention was feasible and well accepted, and statistically significant findings across several domains (Bedard et al., 2023a). The second study is a randomized control trial with an embedded multiple baselines across participants’ design. This study evaluates the program across multiple endpoints (Bedard et al., 2023c), and has a full completion date of April 2023. |
| Instruction Level: Intermediate |
| Keyword(s): Parent Training, Prader-Willi syndrome, Skin Picking, Telehealth |
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Historical Use of Behavior Analytic Interventions to Support Individuals With Prader-Willi Syndrome: A Systematic Review of the Literature |
| ALANNA MORRISSEY (The Chicago School), Kasey Bedard (The Chicago School ), Annette Griffith (The Chicago School) |
| Abstract: Prader-Willi syndrome (PWS) is a complex neurogenetic syndrome that is estimated to affect between 1 in 10,000 and 1 in 30,000 live births (Butler et al., 2017; Cassidy et al., 2012). Despite the clear impact of behaviors of concern on the health, safety, and quality of life of people with PWS and their families, research into effective interventions for PWS related behaviors is very limited. The purpose of this systematic literature review is to provide a comprehensive analysis of the historic use of behavior analytic interventions to target behaviors of concern associated with PWS. Following initial search procedures, 4,708 articles were identified, and 32 articles were included following a screening process. These 32 articles were then coded across a variety of variables. Results indicate that there are very few studies evaluating behavior-analytic interventions for PWS. Of the existing literature, many articles include procedural integrity and data collection concerns. Future research is needed to investigate behavioral interventions for the PWS population that address these concerns and expand interventions to a broader set of challenges and concerns. |
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| Evaluation of a Behavior Analytic Intervention for Skin Picking in Prader-Willi Syndrome |
| KELLY KRUKOWSKI (The Chicago School), Kasey Bedard (The Chicago School ), Annette Griffith (The Chicago School) |
| Abstract: Research estimates that skin picking occurs in as many as 50-100% of individuals with Prader-Willi syndrome (PWS). The severity varies from minor abrasions to significant scars, craters, and disfigurement, resulting in infection and potential hospitalization (Morgan et al., 2010, Whittington & Holland, 2020). Although research is still limited, behavioral interventions have successfully reduced skin picking and other forms of body-focused repetitive behaviors for individuals with a variety of developmental disabilities, including Autism and PWS (Lang et al., 2010). This study aims to fill gaps in the literature by testing a caregiver-implemented intervention for skin picking delivered using remote, video technology. During this eight-week pilot study, 12 caregivers of a child with PWS will access a behavior-analytic treatment program that includes a token system with differential reinforcement of alternative and incompatible behaviors, as well as reinforcement of wound healing. The results of the pilot study indicate that the intervention resulted in significant changes across multiple measures and analyses, with 67% of participants showing significant improvement across all measures, and the remaining participants presenting mixed results. The findings are both very preliminary, and promising. Replication is needed, but findings suggest that caregiver implemented interventions may demonstrate significant effect on this complicated behavior. |
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Prader-Willi Syndrome (PWS) Smart-Start: Evaluations of the Efficacy and Remote Delivery of a Behavior-Analytic Caregiver Training Program for Caregivers of Children With PWS |
| KASEY BEDARD (The Chicago School ), Annette Griffith (The Chicago School), Amy Delyla Delyla Ulm (The Chicago School), Mary Strittman (The Chicago School), Kelly Krukowski (The Chicago School), Angeline V Eaton (The Chicago School ) |
| Abstract: Children with Prader-Willi syndrome (PWS) often experience significant behavioral challenges, resulting in a pressing need for effective program to provide behavioral support to caregivers. PWS Smart-Start is a behavior-analytic caregiver training program developed specifically for caregivers of children with PWS aged 3-14. The purpose of the two current studies was to evaluate the acceptability and efficacy of the PWS Smart-Start program when delivered remotely over telehealth technologies. In the first, thirty-four families of children with PWS received the PWS Smart-Start training using online live video-coaching in order to assess feasibility and preliminary efficacy. In the second, 64 caregiver-child dyads received the program, and efficacy was evaluated across a variety of variables. Results of the first study indicated statistically significant improvements across primary and secondary variables. Study two is currently in progress, with full data available in April 2023. These preliminary results indicate that caregiver-implemented behavior analytic interventions have the potential to not only support children with PWS through behavioral challenges, but also to reduce caregiver stress and burnout, and to improve a variety of aspects of family life. |
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