This project will work closely with patients to design and test a new program that supports brain health in children and youth with childhood-onset lupus (cSLE). The investigators will see how practical and helpful the program is for patients.
The proposed project will use a patient-informed participatory action approach to develop and assess preliminary feasibility and acceptability of an intervention tailored to address the specific brain health needs of cSLE patients.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
TREATMENT
Masking
NONE
Enrollment
60
The Lupus Teen Online Problem Solving program is a brain health intervention developed to meet the needs of youth with childhood-onset lupus. The original Teen Online Problem Solving Program (TOPS) was developed for use with families impacted by traumatic brain injury. The Lupus Teen Online Problem Solving program is based on TOPS, with modifications to maximize relevance and accessibility. The intervention is a 10 session, evidence-based telehealth program providing training in problem-solving, emotion regulation, and communication skills in a one-to-one therapist-mediated design.
The Hospital for Sick Children
Toronto, Ontario, Canada
RECRUITINGNumber of participants recruited
Feasibility will be assessed by rates of participant recruitment.
Time frame: 1 year
Number of intervention sessions attended
Feasibility will be assessed by rates of participant session attendance.
Time frame: through study completion, an average of 1 year
Number of participants completing the intervention
Feasibility will be assessed by rates of participant intervention completion.
Time frame: through study completion, an average of 1 year
Acceptability ratings
Participant acceptability will be determined ratings of their satisfaction with aspects of the program on a brief survey using 5-point Likert scales (ranging from "dissatisfied" to "extremely satisfied").
Time frame: 0-2 weeks post-intervention
Qualitative feedback on feasibility and acceptability of the intervention
Semi- structured interviews administered to participants post-intervention will also assess intervention feasibility and acceptability.
Time frame: 0-2 weeks post-intervention
Depressive symptoms
The 21-item Beck Depression Inventory-II will be used to assess depressive symptoms. Minimum possible total score of 0 and a maximum possible total score of 63. Higher scores means worse.
Time frame: Baseline and 10 weeks
Anxiety symptoms
The 41-item Screen for Child Anxiety Related Disorders self-report form will be used to assess anxiety symptoms. Minimum total score 0 and the maximum total score 82. Higher means worse.
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Time frame: Baseline and 10 weeks
Executive function
The self-report Behavior Rating Inventory of Executive Function, Second Edition will be used to assess executive functioning skills, defined as a set of higher-level cognitive skills that enable problem-solving and goal-directed behaviour.
Time frame: Baseline and 10 weeks
Self-efficacy
The Patient-Reported Outcomes Measurement Information System (PROMIS) Self-Efficacy for Managing Chronic Conditions scale will be used to measure self-efficacy, defined as an individual's belief in their capacity to act in the ways necessary to reach specific goals. Scores range 4-20 with higher scores meaning better efiicacy.
Time frame: Baseline and 10 weeks
Social engagement
The PROMIS Social Role Participation will be used to assess participants' social engagement. Scale is 20-80. Higher score is better.
Time frame: Baseline and 10 weeks
Medication adherence
The Medication Adherence Self-Report Inventory will be used to measure adherence to medication. 0-100% scale with higher meaning better medication adherence.
Time frame: Baseline and 10 weeks
Health-related quality of life
The Pediatric Quality of Life Inventory (PedsQL) will be used to assess participants' health-related quality of life, including aspects of physical functioning, emotional functioning, social functioning, and school functioning. 0-100 range with higher being better.
Time frame: Baseline and 10 weeks