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

NCT03218033 | Completed

• 1 other identifier: 038689EP
• Study Type: interventional
• Target: 37
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Systemic Lupus

Keywords

systemic lupus; self-management; social media

Outcome Measures

Primary Outcomes (1)

• Medication Adherence

  A medication possession ratio was calculated based on fill date information from the subjects' pharmacies

  6 months

Secondary Outcomes (6)

• Stress utilizing the Perceived Severity of Stress Questionnaire

  14 weeks

• Self-efficacy utilizing the Children's Arthritis Self-Efficacy scale

  14 weeks

• Quality of Life utilizing the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) index

  14 weeks

• Sense of agency

  14 weeks

• Sense of community

  14 weeks

Study Arms (2)

Control

NO INTERVENTION

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.

Social Media (SM)

ACTIVE COMPARATOR

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.

Behavioral: Social Media

Interventions

Social Media BEHAVIORAL

Social Media (SM)

Eligibility Criteria

• Age: 13 Years - 23 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64)

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• Milton S. Hershey Medical Center: lead
• Children's Miracle Network: collaborator
• Lupus Foundation of America: collaborator

Related Publications (1)

• 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.

  PMID: 29540181 DERIVED

MeSH Terms

Interventions

Media Exposure

Intervention Hierarchy (Ancestors)

Sociology; Social Sciences; Behavioral Sciences; Behavioral Disciplines and Activities

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: INVESTIGATOR
• Purpose: OTHER
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: July 5, 2017
• First Posted: July 14, 2017
• Study Start: May 1, 2014
• Primary Completion: January 31, 2015
• Study Completion: January 31, 2015
• Last Updated: July 14, 2017

Record last verified: 2017-07