Is Your Child Experiencing Pain and You Don't Know Why?
Summary
Children born with severe brain-based developmental disabilities frequently experience persistent unexplained period of pain and irritability, often compounded by a limited capacity to communicate their distress. We call this entity Pain and irritability of Unknown Origin (PIUO). We have designed a systematic approach, called the PIUO Pathway, to address the management of the children's pain and irritability with the goals of reducing pain symptoms, improving the day-to-day lives of the child and family, and simplifying treatment options for clinicians.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Inclusion criteria:
Children aged 6 months to 18 years with SNI (from any cause) with unexplained pain and irritability and whose cognitive or communication impairments prevent determination of pain location, cause, and type will be eligible to participate.
Children will be identified as possibly experiencing PIUO if a parent (the primary caregiver, including a biological, adoptive, step or foster parent) reports unexplained pain and irritability occurring on average at least one day per week, or nine hours per week, in the preceding two months (60 days). The parent will confirm that the child has unexplained pain and irritability (as opposed to, for example, ongoing pain due to a known cause such as esophagitis).
Children will have cognitive impairment or be non-verbal and have severe levels of disability equivalent to Gross Motor Functional Classification System (GMFCS) scores of 4 or 5.
Parents should have sufficient English/French language skill, or have access to assistance, to participate in the clinic visits and complete survey tools.
Exclusion criteria:
Children will be excluded if they are not within the specified age range; have the communication capabilities and cognitive development to localize their pain; have an explained and treatable cause of pain and irritability.
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
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Additional information
Contact information
Contact Research Nurse Chantel Jolivel Phone: 403-955-7767 E-mail: chantel.jolivel@ahs.ca
Principal investigator:
Vithya Gnanakumar
Clinical trial:
Yes
REB-ID:
REB17-1108