Peer Mentorship for Sickle Cell Disease

Not currently recruiting at 3 trial locations

Overseen By Celia Cassiani, BSc, MSc

Age: < 65

Sex: Any

Trial Phase: Academic

Sponsor: The Hospital for Sick Children

Disqualifiers: Cognitive impairments, Major co-morbid illnesses, others

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

Compensation: Varies

Number of Visits: 10

Duration: 15 weeks

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to determine if a mentor can help young people with sickle cell disease (SCD) manage their condition better. Participants either pair with a mentor who has effectively managed their SCD or join a waitlist to receive a mentor later. The researchers aim to assess the effectiveness of peer mentorship (iPeer2Peer Mentorship) by comparing health outcomes between the two groups. Young people aged 12-18, diagnosed with SCD, who speak English and have internet access might be suitable for this trial. As an unphased trial, this study offers a unique opportunity to explore the potential benefits of mentorship in managing SCD.

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 peer mentorship rather than medication changes.

What prior data suggests that this peer mentorship program is safe for youth with Sickle Cell Disease?

Research has shown that the iPeer2Peer mentorship program is safe for people with sickle cell disease (SCD). In past studies, the program proved to be practical and well-received by participants. Teens in the program reported positive experiences without major negative effects. The program pairs young people with a mentor who has successfully managed their SCD. This approach emphasizes social support and self-care, avoiding medication or physical treatments, which reduces the risk of side effects. Overall, evidence suggests that the iPeer2Peer mentorship is well-tolerated and could benefit young people with SCD. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the iPeer2Peer Mentorship program for sickle cell disease (SCD) because it offers a unique approach by leveraging peer support to enhance self-management skills. Unlike traditional treatments that focus on medication or medical interventions, this program pairs young adults with SCD with trained mentors who have successfully managed their condition. This mentorship aims to provide modeling, reinforcement, and social support, empowering participants to take an active role in managing their health. By focusing on peer-driven encouragement and practical advice, the iPeer2Peer Mentorship could fill a crucial gap in care, potentially improving quality of life for individuals with SCD.

What evidence suggests that the iPeer2Peer Mentorship could be effective for Sickle Cell Disease?

Research shows that the iPeer2Peer Mentorship program, available to participants in this trial, can positively affect young people with sickle cell disease (SCD). Studies have found that this program aids young people with long-term illnesses by connecting them with a peer mentor. These mentors, young adults who successfully manage their own SCD, offer guidance and support. Early results suggest that this mentorship helps participants improve their health management and emotional coping skills. Overall, evidence indicates that this program can enhance young people's health management and social well-being. ^{1 2 3 5 6}

Are You a Good Fit for This Trial?

This trial is for English-speaking youths aged 12-18 with Sickle Cell Disease who have internet access and can use Skype. They should be diagnosed by a hematologist and willing to complete online measures. Those with major illnesses or cognitive impairments, or in other peer support programs cannot join.

Inclusion Criteria

Able to speak and read English

Diagnosed with SCD by a haematologist

Willing and able to complete online measures.

Exclusion Criteria

You have major problems with thinking, remembering, or making decisions.

You have significant medical or mental health conditions that may affect your quality of life assessment.

You are already participating in other programs that provide support or help manage your condition.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants in the experimental group receive the iPeer2Peer mentorship program for 15 weeks, involving up to ten Skype calls with a mentor.

15 weeks

Up to 10 virtual visits (Skype calls)

Waitlist Control

Control group participants are on a waitlist for 15 weeks before receiving the iPeer2Peer program.

15 weeks

Follow-up

Participants are monitored for health outcomes and program acceptability post-intervention.

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

• iPeer2Peer Mentorship

Trial Overview The iPeer2Peer program pairs young SCD patients with mentors who manage their condition well. Over 15 weeks, the intervention group will have up to ten calls with their mentor, while the control group waits for a mentor. The study aims to see if this is doable and how it affects health outcomes.

How Is the Trial Designed?

Group I: iPeer2Peer Mentorship Experimental Treatment 1 Intervention

In addition to standard care, participants in the experimental group will receive the iPeer2Peer program, a peer mentorship program that will provide modelling and reinforcement of self-management by pre-screened and trained peer mentors (young adults with SCD aged 19-25 who have learned to function successfully with their condition). Mentors will encourage participants to develop and engage in self-management skills and provide social support.

Group II: Waitlist Control Group Active Control 1 Intervention

The control group participants will receive standard care and will be on a waitlist to receive the iPeer2Peer program until 15 weeks after completing their baseline questionnaires.

Who Is Running the Clinical Trial?

The Hospital for Sick Children

Lead Sponsor

Trials

724

Recruited

6,969,000+

Children's Hospital of Eastern Ontario

Collaborator

Trials

134

Recruited

61,000+

Royal University Hospital Foundation

Collaborator

Trials

23

Recruited

7,900+

Connecticut Children's Medical Center

Collaborator

Trials

76

Recruited

30,000+

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11795865/

A pilot randomized controlled trial of the iPeer2Peer program ... The objective of this study was to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer program) for adolescents with SCD.

2. clinicaltrials.gov clinicaltrials.gov/study/NCT03989986

iPeer2Peer Program for Youth With Sickle Cell Disease The iPeer2Peer Sickle Cell Disease (SCD) study matches youth (12-18 years of age) with SCD to a mentor (trained young adult) who has learned to manage their ...

3. cjcpc.ca cjcpc.ca/article/S2772-8129(25)00046-6/fulltext

A Mixed-Methods Study of the iPeer2Peer Program in ... iPeer2Peer is an evidence-based virtual peer mentorship program that has improved outcomes for youth in several chronic illness populations.

4. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/39911930/

A pilot randomized controlled trial of the iPeer2Peer ... The objective of this study was to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer program) for adolescents with SCD.

5. withpower.com withpower.com/trial/peer-mentorship-for-sickle-cell-disease-89e14

Peer Mentorship for Sickle Cell Disease · Info for Participants The iPeer2Peer Sickle Cell Disease (SCD) study matches youth (12-18 years of age) with SCD to a mentor (trained young adult) who has learned to manage their ...

6. researchgate.net researchgate.net/publication/387720050_A_Pilot_Randomized_Controlled_Trial_of_the_iPeer2Peer_Program_in_Adolescents_with_Sickle_Cell_Disease_A_Mixed_Method_Study

A Pilot Randomized Controlled Trial of the iPeer2Peer ... Topics Reviewed During Peer Mentor Training. Note. SCD: Sickle Cell Disease. Outcomes. Outcome data consisted of participant self-reported questionnaires ...