Virtual Self-Management Program for Juvenile Arthritis

Overseen By Jessica Booth, BSc

Age: < 18

Sex: Any

Trial Phase: Academic

Sponsor: University of Calgary

Disqualifiers: Untreated psychiatric, Autoimmune, Neurologic, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 4

Duration: 8 weeks

100 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial tests a virtual self-management program for teens with juvenile arthritis (JIA). It aims to determine if online sessions improve symptom management compared to usual care. Participants will attend four group sessions over eight weeks, focusing on disease education, self-care strategies, and peer support. Teens aged 12-17 with a recent JIA diagnosis and internet access may be suitable for this study. After the trial, even those in the control group can try the program. As an unphased trial, this study provides a unique opportunity for teens to gain valuable skills and support in managing their condition.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications. It seems focused on a self-management program rather than medication changes.

What prior data suggests that this virtual self-management program is safe for adolescents with juvenile arthritis?

Research shows that online self-management programs for juvenile idiopathic arthritis (JIA) are generally well-received by participants. Studies on similar programs for teenagers with JIA have found them to be popular and safe. These programs typically include education about the disease, self-care techniques, and peer support, all proven safe.

No serious side effects have been reported from these programs. They aim to enhance knowledge and self-care skills without physical risks. Since this trial tests an online program rather than a drug or surgery, it is considered safe. Participants can expect a helpful and informative experience aimed at better managing their condition. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Virtual Self-Management Program (SMP) for juvenile arthritis because it offers a fresh approach to managing the condition through virtual educational sessions. Unlike standard care, which typically involves medication and periodic doctor visits, SMP empowers patients by providing four 60-90 minute virtual sessions over eight weeks. This method encourages active participation and self-management, potentially leading to better long-term outcomes. By fostering a supportive group environment, this program could help young patients learn to manage their symptoms more effectively, contributing to improved quality of life.

What evidence suggests that this virtual self-management program is effective for juvenile arthritis?

Research shows that self-management programs (SMPs) can effectively assist teenagers with Juvenile Idiopathic Arthritis (JIA) by providing crucial information about the disease, teaching self-care skills, and offering peer support. Earlier studies found that online programs for JIA improve pain control, exercise, and overall quality of life. These programs enhance self-confidence, enabling participants to feel more capable of managing their condition. In this trial, participants will receive either the Virtual Self-Management Program (SMP) alongside standard care or standard care only. The online format of the SMP facilitates connection and experience-sharing among teens, which is vital for emotional support. Overall, SMPs are promising tools for effectively managing JIA. ^{2 6 7 8 9}

Are You a Good Fit for This Trial?

This trial is for adolescents with Juvenile Idiopathic Arthritis (JIA) who are interested in a virtual program to help manage their condition. Participants should be willing to attend online group sessions and complete certain health measures before and after the program.

Inclusion Criteria

I am between 12 and 17 years old.

Willing and able to complete online measures

Followed in one of the pediatric rheumatology clinics participating in the RCT

Exclusion Criteria

I have other chronic conditions that could affect my treatment results.

I do not have untreated mental health issues that prevent me from understanding or participating in group activities.

Past participation in the last year or participating in another peer-support or self-management program

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants in the SMP group partake in four 60-90 minute virtual group sessions over 8 weeks, including JIA disease education, self-management strategies, and peer support.

8 weeks

4 virtual group sessions

Follow-up

Participants are monitored for safety and effectiveness after treatment, including completion of outcome measures.

4 weeks

Optional SMP for Control Group

Participants in the control group are offered the SMP after completion of the post-control outcome measures.

8 weeks

What Are the Treatments Tested in This Trial?

Interventions

• Virtual Self-Management Program (SMP)

Trial Overview

The study is testing a Virtual Self-Management Program (SMP) that includes disease education, self-management strategies, and peer support over eight weeks, compared to standard care without this additional support.

How Is the Trial Designed?

Group I: SMP Program with Standard Care Experimental Treatment 1 Intervention

four 60-90 minute virtual educational sessions over 8 weeks with a group of 4-6 participants

Group II: Standard Care Only Active Control 1 Intervention

Standard of care(no formal education program similar to SMP) and placed on 8-week waitlist for optional intervention.

Who Is Running the Clinical Trial?

University of Calgary

Lead Sponsor

Trials

827

Recruited

902,000+

University of Alberta

Collaborator

Trials

957

Recruited

437,000+

University of Toronto

Collaborator

Trials

739

Recruited

1,125,000+

University of Manitoba

Collaborator

Trials

628

Recruited

209,000+

The Hospital for Sick Children

Collaborator

Trials

724

Recruited

6,969,000+

University of British Columbia

Collaborator

Trials

1,506

Recruited

2,528,000+

Published Research Related to This Trial

The self-management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) was found to be acceptable, with participants believing it would effectively support their self-management needs.

Feedback indicated that having a rheumatology health care provider facilitate the sessions would enhance trust in the information provided, and adjustments were made to the program based on participant suggestions to improve its content and format.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis. Chomistek, K., Barnabe, C., Naqvi, SF., et al.[2022]

The Internet-based Arthritis Self-Management Program (ASMP) significantly improved health status measures, including pain and disability, in patients with arthritis over a 1-year period, compared to usual care.

Despite the improvements in health status, the program did not lead to significant changes in health behaviors or healthcare utilization, indicating that while it helps with health outcomes, it may not influence how patients engage with their healthcare.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The internet-based arthritis self-management program: a one-year randomized trial for patients with arthritis or fibromyalgia. Lorig, KR., Ritter, PL., Laurent, DD., et al.[2022]

A qualitative study involving 25 participants (9 young people with Juvenile Arthritis, 8 parents or carers, and 8 healthcare professionals) found strong agreement on the need for a mobile app to support self-management of Juvenile Arthritis, emphasizing the importance of ownership and control for young users.

Key features desired for the app include interactive and engaging content, developmentally appropriate information, symptom monitoring, and access to social support, which could enhance the self-management experience for young people with this condition.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Young People's, Parents', and Professionals' Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study. Waite-Jones, JM., Majeed-Ariss, R., Smith, J., et al.[2020]

The Teens Taking Charge Web-based self-management intervention significantly reduced pain intensity and pain interference in adolescents with juvenile idiopathic arthritis (JIA) compared to a Web-based education control, with effects lasting up to 12 months.

Participants in the intervention group also showed improved health-related quality of life (HRQL) related to pain and daily activities, indicating that the program effectively supports long-term health outcomes for adolescents with JIA.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Teens Taking Charge: A Randomized Controlled Trial of a Web-Based Self-Management Program With Telephone Support for Adolescents With Juvenile Idiopathic Arthritis. Stinson, JN., Lalloo, C., Hundert, AS., et al.[2020]

A systematic review of 15 studies found that eHealth and mHealth interventions can effectively support symptom monitoring in children with juvenile idiopathic arthritis (JIA), particularly through real-time pain tracking, which is preferred over traditional recall methods.

While some interventions showed potential benefits in promoting physical activity and self-management, the overall evidence is limited and requires more rigorous research to confirm their long-term effectiveness and impact on health outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis. Butler, S., Sculley, D., Santos, D., et al.[2022]

An online self-management program for adolescents with juvenile idiopathic arthritis (JIA) showed modest improvements in pain and health-related quality of life (HRQOL) over a 12-week period, with no significant differences compared to a control group receiving disease education.

Improvements in self-efficacy, emotional coping, and disease knowledge were linked to better pain and HRQOL outcomes, suggesting that these factors may play a role in managing JIA effectively.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis. Connelly, M., Schanberg, LE., Ardoin, S., et al.[2020]

The usability testing of the bilingual self-management program for adolescents with juvenile idiopathic arthritis (JIA) involved 19 participants (11 English-speaking and 8 French-speaking), revealing that both youth and parents found the program easy to navigate and understand, with no major usability issues identified after iterative testing.

Participants appreciated the interactive features of the program, such as discussion boards and video clips, which helped them feel supported in managing their condition, highlighting the program's effectiveness in meeting the unique needs of adolescents with JIA and their families.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Usability testing of an online self-management program for adolescents with juvenile idiopathic arthritis. Stinson, J., McGrath, P., Hodnett, E., et al.[2021]

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The study objective was to test the acceptability of a self‐management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA)

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Virtual Self-Management Program for JIA

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