Pain is one of the most common symptoms of extreme stress in youth. Without treatment, short-term pain can last for months to years (called 'chronic pain'; CP), a problem already affecting 1 in 5 Canadian youth. The COVID-19 pandemic is one of the greatest threats to youth mental health seen in generations. CP in childhood can trigger a wave of mental health issues that last well into adulthood. In 2019, we learned that "access to pain care" is poor and a priority for youth with CP and their families. Unfortunately, COVID-19 has only made access more difficult. In 2020, we created an online "stepped care" program called the Power over Pain Portal for youth with CP. Stepped care is a promising way to improve access to CP care by tailoring care based on the symptoms each youth is experiencing. Like a ladder, youth start with one type of care and then "step up" or "step down" to more or less intense care depending on what they need. Over the past year, funded by CIHR, we worked with hundreds of youth and healthcare professionals across Canada to understand how the pandemic has affected pain and mental health. We also summarized all online pain self-management programs including peer support for youth to find the best resources to include in the Portal and will translate the portal content into French. Together with a diverse group of youth with CP, we have now co-designed the online Portal. The next step (focus of this grant) is to test the Portal with youth to ensure it can be implemented and is helpful. We will recruit 93 youth with CP waiting for specialist care at 11 CP clinics across Canada to use the Portal for 4 months. We will see how they use the Portal and if it helps to improve their pain and mental health. This study is important because it will allow us to understand how the Portal works in the real world before wide public release (English and French) to support all youth in Canada with CP with accessible, evidence-based pain care.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
TREATMENT
Masking
NONE
Enrollment
93
Youth from different ages, sexes, gender, sexual orientations, races, dwelling and school/employment status will receive access to the Power over Pain Portal for 4 months. The portal consists of self-assessment tools (bi-weekly check-ins to provide users with feedback on their mood, anxiety, pain, and sleep and guide decision making on choice of interventions), evidence-based virtual educational (pain neuroscience) and cognitive behavioural therapy (CBT) pain interventions that are delivered in a stepped care manner based on participant needs/preference. The overall objective is to determine the implementation (guided by Proctor's implementation conceptual framework) and clinical effectiveness of the PoP Portal in a sample of youth (12-18 years of age) who are on the waitlist for tertiary care consultation at any pediatric CP clinic in Canada.
IWK Health Center
Halifax, Nova Scotia, Canada
NOT_YET_RECRUITINGMcMaster Children's Hospital
Hamilton, Ontario, Canada
RECRUITINGChildren's Hospital London Health Sciences
London, Ontario, Canada
NOT_YET_RECRUITINGChildren's Hospital of Eastern Ontario (CHEO)
Ottawa, Ontario, Canada
NOT_YET_RECRUITINGHospital for Sick Children
Toronto, Ontario, Canada
RECRUITINGCHU Sainte-Justine
Montreal, Quebec, Canada
NOT_YET_RECRUITINGJim Pattison
Saskatoon, Saskatchewan, Canada
NOT_YET_RECRUITINGAlberta Children's Hospital
Calgary, Canada
NOT_YET_RECRUITINGStollery Children's Hospital
Edmonton, Canada
NOT_YET_RECRUITINGMontreal Children's Hospital
Montreal, Canada
NOT_YET_RECRUITING...and 1 more locations
Acceptability
Will be assessed using the Acceptability e-Scale administered at T2 and during the qualitative interview. Participants rate features of the portal on a scale from 1-5 with higher scores indicating higher acceptability.
Time frame: 16 weeks
Adoption
Characterized via participant-level analytics of interactions with each feature. The benchmark will be \>60% of participants completing ≥ 1 portal intervention.
Time frame: 16 weeks
Appropriateness
Perceived fit and compatibility of portal participants' needs. Assessed via the qualitative interview at T2.
Time frame: 16 weeks
Portal Feasibility
Degree to which to PoP Portal could be used as intended. Will be assessed via monthly audit of support tickets and characterization of the severity of encountered issues.
Time frame: 16 weeks
Fidelity
Degree to which the PoP Portal and each intervention independently (WEBMap, iCanCope, iPeer2Peer) was used as intended. Will be characterized by intervention use analytics.
Time frame: 16 weeks
Pain Intensity
Will be measured using the PROMIS Pain Intensity Scale which assesses pain the past 7 days using an 11-point numerical rating scale (NRS) with verbal anchors "no pain" at 0 and "worst pain you can think of" at 10. This tool demonstrates relevance, feasibility, and understandability for youth with chronic pain.
Time frame: 16 weeks
Pain Interference
Will be assessed using the PROMIS Pain Interference Short-form Scale and 8-item tool that uses a 5-point Likert scale, ranging from never to almost always, with higher scores representing greater interference with function.
Time frame: 16 weeks
Anxiety
Will be assessed using a PROMIS Paediatric Anxiety Short-form Scale, an 8-item tool that uses a 5-point Likert scale, ranging from never to almost always, with higher scores representing more anxiety symptoms.
Time frame: 16 weeks
Depression
Will be assessed using PROMIS Paediatric Depression Short-form Scale, an 8-item tool that used a 5-point Likert scale, ranging from never to almost always, with higher scores representing more depressive symptoms.
Time frame: 16 weeks
Insomnia
Will be assessed using a 7-item Insomnia Severity Index, higher score representing more severe insomnia.
Time frame: 16 weeks
Health Related Quality of Life
Will be assessed using a 7-item PROMIS Paediatric Global Health Short-form Scales with higher scores representing overall better health.
Time frame: 16 weeks
School Attendance
Will be assessed using a single item modified by investigators to capture school absenteeism as a continuous variable ranging from 0 to 240 days. Self-report of school attendance among a CP population is comparable to school administrative data.
Time frame: 16 weeks
Healthcare Utilization
Will capture family physician and emergency visits, psychological or physical therapies and changes in medication, using a CP modified version of Ambulatory and Home Care Record at T1 and T2.
Time frame: 16 weeks
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