Occupational Performance Patterns in Children with PANS

Parents and Carers Needed to Participate in Research Study!
Do you have a child aged between 5 and 12 years with a PANS/ PANDAS diagnosis and currently live in either Australia, UK, USA, Canada, Ireland or New Zealand? Researchers at the University of Newcastle, Australia, are researching the impact that PANS/ PANDAS flares has on a child’s participation in daily life activities. If you are interested in finding out more or participating, please click here.

We encourage you to invite other families you know, who may also be interested in participating in the study, by sharing this flyer or the above link.

This research is being coordinated by Michelle Newby, PhD Candidate; Shelly J Lane, PhD, OTR; Kirsti Haracz, PhD ; and Janice Tona, PhD, OTR.

This project has been approved by the University of Newcastle, Human Research Ethics Committee, Approval No. H-2019-0284.

Gabriella: Tell us about the PP research study you’re leading.

Michelle: I’m working with fellow Occupational Therapy researchers to study the impact that experiencing a PP flare has on a child’s participation in daily life activities. We know from other research and from our own clinical experience that PP flares make it difficult for children to participate in daily activities. However, this has not been systematically measured. In this project, we are using standardized assessment tools, which will allow us to record each child’s participation more precisely, and compare it to other children in the same age group. We are looking for parents and caregivers of PANS/PANDAS diagnosed patients who are between ages 5 and 12 years of age and have had a flare in the past six months. They can live in Australia, UK, USA, Canada, Ireland or New Zealand.

Gabriella: Is it just a single questionnaire, or do you track patients over time?

Michelle: We are asking caregivers to complete a series of questionnaires at two different time points. Once when their child is experiencing a PP flare and then again when they have recovered from the flare.

Gabriella: What do the questionnaires include?

Michelle: The questionnaires we are using include:

  • A short questionnaire about you and your child: This will include questions about the caregivers’ background and current situation, as well as questions about the child’s diagnosis.
  • The Vineland Adaptive Behaviour Scale: This will include questions about the child’s communication, daily living skills, and socialization skills.
  • The Sensory Processing Measure (Home form): This will include questions about the child’s responses to sensory stimulation.
  • Caregivers will be sent an email every 4 weeks with a link to a short online survey to help us understand if their child has had a flare in the past month or not. The assessment forms included in this study are commonly used by Occupational Therapists to assess a child’s sensory responses to and performance in daily tasks.

Gabriella: How long will it take to participate?

Michelle: The questionnaires should take no more than 60 minutes to complete at each of the two-time points.

Gabriella: How will the information collected in this study be used?

Michelle: Findings from this study will be used to inform Occupational Therapists and other health professionals about PANS/PANDAS, and help guide their assessment and treatment methods. We plan to inform health professionals of our findings by publishing papers in scientific journals and in professional presentations. The results will also be reported in my PhD thesis at the University of Newcastle, NSW, Australia.

All information collected will be securely stored. Information collected will be de-identified to protect privacy.

Gabriella: We have a permanent page with more information on How to Enroll in this study on Occupational Performance Patterns in Children with PANS/PANDAS and people can contact you directly.

Michelle: You can read our Participant Information Form by clicking on this link. You can also email me directly on michelle.newby@uon.edu.au. I’m really happy to answer any questions you have about the study.

Michelle Newby BHSc(OT), MSc
PhD Candidate, University of Newcastle, NSW, Australia
Occupational Therapist & Director, Stepping Stones Therapy for Children, Newcastle, NSW, Australia

Gabriella: Thank you so much for this important work. We urge everyone to take the time to check out the requirements and enroll if you can. I looked over the information, and it would not take too much time or effort to participate. It is so important to enroll in studies such as this in order to keep moving the data forward. This is our community; we need all hands on deck to improve the lives of those affected by PANS/PANDAS.