Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS): A Qualitative Study of Parental Perceptions of Factors in Remission
- Janice Diane Weddle, Liberty UniversityFollow
- Date: 9-9-2022
- Department: School of Behavioral Sciences
- Degree: Doctor of Philosophy in Psychology (PhD)
Read full dissertation: https://digitalcommons.liberty.edu/cgi/viewcontent.cgi?article=4927&context=doctoral
Summary: The purpose of this study was to explore parents’ perceptions related to factors of remission in PANDAS. Findings from this study are supportive of a previous study by Latimer et al. (2015) that length of illness is not related to presence of remission. This study is also supportive of prior research that PANDAS occurs more in males than females, generally with onset at age 6-8 years (Kovacevic et al., 2015; Swedo et al., 2015). This study also found that the mean length of time children were misdiagnosed or undiagnosed from symptom onset to beginning PANDAS treatment was 23.75 months (n=87). This study did not find statistically significant correlations between PANDAS symptoms, age, and severity related to remission. This study found that while in remission (n=59), the majority of children, 85%, still have PANDAS symptoms (n=50). This study found that parents attribute antibiotics to the greatest PANDAS healing treatment effect (n=34) and IVIG as the second most important healing treatment (n=16).
Principal Investigator: Janice Weddle, M.Ed., Ph.D. Candidate, Liberty University
Janice Weddle asks PANDAS parents to enroll in her 5-minute survey. Note, this is for PANDAS Parents only. Details on Janice’s reasons for this are included below.
Janice is a psychology doctoral student at Liberty University and the mom of an eleven-year-old boy diagnosed with PANDAS. The survey is a research component of her Psychology dissertation on PANDAS. The purpose of this study is to shed light on PANDAS remission experiences. Please see below for more information from Janice and a quick question-answer session with ASPIRE.
Please read more from Janice
ATTENTION PANDAS PARENTS! I am a psychology doctoral student at Liberty University and the mom of an eleven-year-old boy diagnosed with PANDAS. I am conducting research as part of the requirements for a Doctor of Philosophy degree at Liberty University. The purpose of my research is to discover parents’ perceptions of remission in PANDAS. To participate, you must be at least 18 years of age and the parent of a child diagnosed with PANDAS by a medical doctor, and English must be your primary language. Participants are asked to complete a short, anonymous online survey regarding their experience with PANDAS remission, which should take about five minutes. If you would like to participate and meet the study criteria, please follow the link below. A consent document is provided on the first page of the survey. If you agree to participate in this study, click the “yes to consent” button at the bottom of the consent page, and you will be directed into the survey. Thank you! “
– Janice Weddle
- PANDAS parents with a PANDAS diagnosis from a medical doctor
- Primary language is English
About the Survey
- 14 questions
- Not expected to take more than 5 minutes
- No identifying information will be requested on the survey. I am committed to protecting privacy, and all information obtained will be kept secure with confidentiality prioritized.
- There is no compensation for participating in this study, however, the benefit of being in this study is answering important questions related to PANDAS experiences that can lead to future research on effective treatment plans and can serve as a path of hope for PANDAS families.
- Participants are free to withdraw or decline for any reason.
At the start of the survey page, there is detailed consent information, contact information for the researcher, and more information on the purpose and procedures of the study.
Ask Janice Questions
Contact Janice Weddle directly with questions or concerns,
- Phone – 417-259-2291
- Email at firstname.lastname@example.org
- If you have any questions or concerns regarding this study and would like to talk to someone other than the researcher, you are encouraged to contact the Institutional Review Board, 1971 University Blvd., Green Hall Ste. 2845, Lynchburg, VA 24515 or email at email@example.com.
Questions & Answers with ASPIRE & Janice
If the patient has a diagnosis of PANS, but not specifically PANDAS, can they participate in this survey? Janice: This survey is related only to PANDAS. Asking about a PANDAS diagnosis is one of the screening questions when people go to the survey, and if they select no to a pandas diagnosis, they are automatically redirected to the end of the survey.
Why only accept PANDAS families and not PANS also?
Janice: My only reason for not including PANS is to create a more narrow focus of the study.
Are Adult PANDAS patients permitted to respond to the survey?
Janice: No, the purpose of this study is to explore parents’ perceptions of factors contributing to the remission of PANDAS. In the screening questions, if a person is not a parent of a child with PANDAS they will be automatically redirected to the end of the survey.
Can people outside the Unites States participate?
Janice: English is the primary language, but the location doesn’t matter.
If you have more than one child with PANS, can you do the survey more than once?
Janice: Yes, and those directions are listed at the top of the survey, too. If they have multiple children with PANDAS parents should complete a separate survey for each.