Clinical trial NCT03218033: Use of Social Media to Improve Medication Adherence in Adolescents and Young Adults With Systemic Lupus
Official title: Improvement of Medication Adherence in Adolescents With SLE Using Web-based Education With and Without a Social Media Intervention
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Systemic Lupus
Keywords: systemic lupus
self-management
social media
Lead sponsor: Milton S. Hershey Medical Center
Sponsor class: OTHER
Collaborators: name: Children's Miracle Network
name: Lupus Foundation of America
First posted: 2017-07-14
Enrollment: 37
Sex: ALL
Minimum age (years): 13
Maximum age (years): 23
Standard ages: CHILD
ADULT
Accepts healthy volunteers: yes
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: OTHER

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.

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.

Primary outcomes:
measure: Medication Adherence
timeFrame: 6 months
Secondary outcomes:
measure: Stress utilizing the Perceived Severity of Stress Questionnaire
timeFrame: 14 weeks
measure: Self-efficacy utilizing the Children's Arthritis Self-Efficacy scale
timeFrame: 14 weeks
measure: Quality of Life utilizing the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) index
timeFrame: 14 weeks
measure: Sense of agency
timeFrame: 14 weeks
measure: Sense of community
timeFrame: 14 weeks
measure: Empowerment
timeFrame: 14 weeks
Other outcomes:
Locations:
Study officials:
References:
citation: 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.