The Prader-Willi Syndrome Association and the Foundation for Prader-Willi Research (FPWR) have partnered to launch a survey assessing the use of telemedicine as a way of improving access to care from Prader-Willi syndrome (PWS) specialists.
The online survey also seeks to evaluate the stress of caregivers within the PWS community due to the need of traveling for healthcare access, and to have a better understanding of their demographics (e.g., age, race, and gender). In addition, the survey will analyze the well-being of children with PWS.
Led by Jennifer Miller, MD, at the Department of Pediatrics at the University of Florida, the survey is open to parents or caregivers, ages 18 or older, of a child diagnosed with PWS.
“Telemedicine offers new opportunities to improve the health of individuals with PWS, wherever they live,” Theresa V. Strong, PhD, director of research programs at FPWR, said in a press release. “We’re excited to be partnering with PWSA |USA and Dr. Miller to explore how telemedicine can be used in the PWS community.”
Participants will need to complete the survey as well as two measures: a modified version of the Generalized Anxiety Disorder 7-item scale (GAD-7) questionnaire to assess anxiety related to healthcare travel; and the Patient Reported Outcomes Measurement Information System (PROMIS) Parent Proxy questionnaire to evaluate health and well-being in PWS.
The survey takes approximately 30 minutes to complete. Participants then are asked if they wish to be contacted for follow-up questions over one year.
Despite no direct benefit to the participants themselves, the results of the survey may aid future caregivers and patients, according to the researchers.
“The launch of this study is really exciting,” said Paige Rivard, CEO at PWSA | USA.
“Not only is it an incredible opportunity to assess the dynamic needs of the PWS community, but it also is a chance for PWSA | USA to partner with FPWR and Dr. Jennifer Miller, a key PWS clinician, to better serve families affected by PWS,” Rivard said. “Through this study we will gain a deeper understanding of who our PWS community is and how technology, particularly telehealth, might increase access to care and help reduce the financial burden of travel to specialists.”
Participation is confidential and no personal information will be shared if the survey’s results are published and presented.
Also, participants can exit the survey at any time. Those who wish to stop can call Miller directly at (352) 273-9600, or ask the investigator for a return call. More details are available here. An informational flyer is available here.
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