Use of Social Media to Improve Medication Adherence in Adolescents and Young Adults With Systemic Lupus

NCT ID: NCT03218033

Last Updated: 2017-07-14

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 37 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2014-05-01
• Study Completion Date: 2015-01-31

Brief Summary

The goal of this study was to examine the effect of an online educational program with and without a social media experience.The primary goal of this study was to determine whether medication adherence would be improved by having adolescents and young adults with systemic lupus erythematosus participate in an online educational website, with or without a social media experience. The secondary goal was to determine whether secondary outcomes such as quality of life, stress, and self-efficacy improved in this model, and whether these changes were associated with improvements in medication management.

Detailed Description

Self-management skills, including medication management, are vital to the health of adolescents and young adults with systemic lupus erythematosus (SLE). Non-adherence with medications in patients with systemic lupus has been noted to be as poor as 40%. Success in disease control can be significantly impacted by such non-adherence. Poor medication compliance is associated with higher SLE disease activity scores and higher SLE disease activity in turn has been demonstrated to be significantly associated with a decline in quality of life. Much attention has been paid to how to improve self-management skills in adults, but less is known about how to target adolescents, an age group with a complex set of emotional and developmental needs.

The goal of this study was to examine the effect of an online educational program with and without a social media experience.The primary goal of this study was to determine whether medication adherence would be improved by having adolescents and young adults with SLE participate in an online educational website, with or without a social media experience. The secondary goal was to determine whether secondary outcomes such as quality of life, stress, and self-efficacy improved in this model, and whether these changes were associated with improvements in medication management.

Conditions

Systemic Lupus

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: OTHER
• Blinding Strategy: SINGLE

Study Groups

Control

Participants visited the Facinglupustogether.com website and participated in consecutive weekly modules for 8 weeks. At the end of each module there were questions pertaining to the subject of each module. The control group answered the questions in provided journals and these were sent back to the investigator. All subjects completed surveys in REDCap prior to the study intervention and again 6 weeks after study completion to assess secondary outcome measures. Medication adherence was assessed by calculating a medication possession ratio by acquiring information on fill dates at the subjects' pharmacies.

Group Type: NO_INTERVENTION

No interventions assigned to this group

Social Media (SM)

The intervention phase was 8 weeks in duration. Participants visited the Facinglupustogether.com website and participated in consecutive weekly modules. 8 The SM group answered the questions at the end of each module on a blogging site with other SM participants. SM participants were encouraged to provide feedback or questions about the material or personal questions that arose in response to each module.

All subjects completed surveys in REDCap prior to the study intervention and again 6 weeks after study completion to assess secondary outcome measures. Medication adherence was assessed by calculating a medication possession ratio by acquiring information on fill dates at the subjects' pharmacies.

Group Type: ACTIVE_COMPARATOR

Social Media

Intervention Type: BEHAVIORAL

Interventions

Social Media

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• age between 13 and 23 at the time of recruitment
• having the diagnosis of SLE made or confirmed by a pediatric or adult rheumatologist at Penn State Children's Hospital/Hershey Medical Center
• having regular internet access.

Exclusion Criteria

• age <13 or >23 years
• comorbid medical or psychiatric illness that would affect the outcome measures.

• Minimum Eligible Age: 13 Years
• Maximum Eligible Age: 23 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Children's Miracle Network

OTHER

Sponsor Role: collaborator

Lupus Foundation of America

OTHER

Sponsor Role: collaborator

Milton S. Hershey Medical Center

OTHER

Sponsor Role: lead

Responsible Party

Lisabeth Scalzi

Principal Investigator

Responsibility Role: PRINCIPAL_INVESTIGATOR

References

Scalzi LV, Hollenbeak CS, Mascuilli E, Olsen N. Improvement of medication adherence in adolescents and young adults with SLE using web-based education with and without a social media intervention, a pilot study. Pediatr Rheumatol Online J. 2018 Mar 14;16(1):18. doi: 10.1186/s12969-018-0232-2.

Reference Type: DERIVED

PMID: 29540181 (View on PubMed)

Other Identifiers

038689EP

Identifier Type: -

Identifier Source: org_study_id