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OpenTrials
Completed

NCT Number: NCT03218033

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

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.

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Key information

Conditions

Systemic Lupus

Age range

13 year–23 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Social Media

Behavioral

Primary outcomes

  1. Medication Adherence

    Time frame: 6 months

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

Secondary outcomes

  1. Stress utilizing the Perceived Severity of Stress Questionnaire

    Time frame: 14 weeks

    Stress was measured by the Perceived Severity of Stress Questionnaire (PSQ)

  2. Self-efficacy utilizing the Children's Arthritis Self-Efficacy scale

    Time frame: 14 weeks

    Self-efficacy was measured using the Children's Arthritis Self-Efficacy scale (CASE) which was modified slightly for systemic lupus

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

    Time frame: 14 weeks

    Quality of life was assessed using the validated Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) index

  4. Sense of agency

    Time frame: 14 weeks

    Sense of agency (SOA) was measured via three Likert scale questions aimed to tap three core concepts of agency: competence ("Blogging… makes me feel I have control over my own voice"), assertiveness ("…enables me to assert myself"), and confidence ("…makes me feel I have a distinct voice")

  5. Sense of community

    Time frame: 14 weeks

    Sense of community (SOC) was measured using a 22-item scale (8, 9, 20). SOC consists of feelings of belonging to the community, having influence on, and being influenced by, the community, being supported by the community while also supporting them; and feelings of shared emotional connection.

  6. Empowerment

    Time frame: 14 weeks

    Empowerment was assessed using a validated quantitative Likert scale tool that measured 1) "empowering processes" (Appendix A), and 2) "empowering outcomes"

Sponsors and collaborators

Lead sponsor

Milton S. Hershey Medical Center

Other

Collaborators

  • Children's Miracle Network
  • Lupus Foundation of America

Registry information

Official study title

Improvement of Medication Adherence in Adolescents With SLE Using Web-based Education With and Without a Social Media Intervention

Important dates

Study start
2014
Primary completion
2015
Study completion
2015
First posted
Jul 14, 2017
Registry last updated
Jul 14, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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