BACKGROUND: Children with pediatric acute-onset neuropsychiatric syndrome (PANS) present with abrupt and dramatic onset of obsessive–compulsive disorder (OCD) and other neuropsychiatric symptoms that can cause significant distress in the child’s functioning in school and home. They may be referred to occupational therapy for problems such as deterioration in handwriting, sensory processing problems, urinary frequency, and motor incoordination.

Findings from this study will help occupational therapists in identifying functional limitations experienced by children with PANS during exacerbations, because it is not uncommon for these children to be referred to receive occupational therapy (OT) services, and this study was based on the Occupational Therapy Practice Framework: Domain and Process (2nd ed.; American Occupational Therapy Association, 2008).

RESEARCH QUESTIONS: What percentage of children with PANS experience functional limitations during exacerbations in each area of occupation, body function, and performance skills studies? What percentage of children with PANS have received OT services?

DESIGN: This was an exploratory study using a researcher-designed online survey based on the 2nd edition of the Framework. Convenience sampling was used to recruit parents of children with PANS from PANS online support groups and physicians who specialize in PANS.

PARTICIPANTS: Participants had to be an adult parent or guardian whose child was diagnosed with PANS by a physician, and the child had at least one exacerbation in the past 5 yr.

INSTRUMENT: A researcher-designed questionnaire was used to address the research questions. The survey questions were based on the 2nd edition of the Framework. Responses were recorded on a 4-point Likert scale; an open comments section was also included with each question.

ANALYSIS: Descriptive statistics were used to assess demographic characteristics of participants; the percentage of children with PANS experiencing functional limitations in areas of occupation, body functions, and performance skills during exacerbations; and the percentage of children who received OT services during exacerbation.

RESULTS: The study included reports for 111 children. Functional limitations were reported in all 18 areas of occupation (activities of daily living, school functions, play, and social participation) and all 17 aspects of body functions and performance skills (neuromusculoskeletal and movement-related functions, motor skills, sensory and mental functions, and process skills). Only 37 children had received OT services.

DISCUSSION: The impact of PANS may be more pervasive than previously identified. Future research should identify best practice for OT during and after exacerbation.

IMPACT: This study will help OT service providers to build a complete occupational profile of a child with PANS, and plan appropriate intervention for during and after an exacerbation. Health professionals will also be able to educate parents and teachers to develop realistic expectations for the child.

American Occupational Therapy Association. (2008). Occupational therapy practice framework: Domain and process (2nd ed.). American Journal of Occupational Therapy, 62, 625–683. http://dx.doi.org/10.5014/ajot.62.6.625