Systemic Lupus
Conditions
Keywords
systemic lupus, self-management, social media
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.
Interventions
BEHAVIORALSocial Media
Sponsors
Children's Miracle Network
Lupus Foundation of America
Milton S. Hershey Medical Center
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Investigator)
Eligibility
Sex/Gender
ALL
Age
13 Years to 23 Years
Healthy volunteers
Yes
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Medication Adherence | 6 months | A medication possession ratio was calculated based on fill date information from the subjects' pharmacies |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Self-efficacy utilizing the Children's Arthritis Self-Efficacy scale | 14 weeks | Self-efficacy was measured using the Children's Arthritis Self-Efficacy scale (CASE) which was modified slightly for systemic lupus |
| Quality of Life utilizing the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) index | 14 weeks | Quality of life was assessed using the validated Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) index |
| Stress utilizing the Perceived Severity of Stress Questionnaire | 14 weeks | Stress was measured by the Perceived Severity of Stress Questionnaire (PSQ) |
| Sense of community | 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. |
| Empowerment | 14 weeks | Empowerment was assessed using a validated quantitative Likert scale tool that measured 1) empowering processes (Appendix A), and 2) empowering outcomes |
| Sense of agency | 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) |
Outcome results
None listed