Self-management and adherence in childhood-onset systemic lupus erythematosus: what are we missing?

Abstract

Objectives The aims of this study are (1) to characterize factors influencing self-management behaviors and quality of life in adolescent and young adult (AYA) patients with childhood-onset systemic lupus erythematosus (cSLE) and (2) to identify barriers and facilitators of treatment adherence via focus groups. Methods AYAs with cSLE ages 12–24 years and primary caregivers of the adolescents participated in this study. Recruitment occurred during pediatric rheumatology clinic visits at a Midwestern children's hospital or the hospital's cSLE active clinic registry. Information about disease severity was obtained from patient health records. Pain and fatigue questionnaires were administered. Descriptive statistics were used to analyze data. Results Thirty-one AYA patients and caregivers participated in six focus groups. Ten major themes emerged from sessions; four were expressed both by the AYA and caregiver groups: knowledge deficits about cSLE, symptoms limiting daily function, specifically mood and cognition/learning, barriers and facilitators of adherence, and worry about the future. Themes unique to AYA participants included symptoms limiting daily functioning—pain/fatigue, self-care and management, impact on personal relationships, and health care provider communication/relationship. For caregiver groups unique themes included need for school advocacy, disruption of family schedule, and sense of normalcy for their adolescent. Conclusion AYAs with cSLE face a lifelong disease characterized by pervasive pain, fatigue, organ damage, isolation—social and/or physical—and psycho-socioeducational challenges. This study confirmed that continued psychosocial support, health information education, adherence interventions, and personalized treatment plans are necessary to increase self-management and autonomy in AYAs with cSLE.

An Update on the Management of Childhood-Onset Systemic Lupus Erythematosus

“…cSLE patients are mainly in the adolescence period [ 20 ]. This transitional phase to adulthood involves several physical and emotional changes [ 37 ], and the impact of this complex disease may affect their self-management and self-esteem [ 174 , 175 ]. In fact, a cSLE study in adolescents and young adults with a semi-structured interview showed that the use of medication served as reminders of their illness and made them feel abnormal [ 176 ].…”

“…Thus, it is recommended that medication adherence should be checked during the pediatric rheumatologist appointments, especially before any decisions around treatment modifications [ 2 , 96 ]. Understanding and responding to adolescent demands with a personalized treatment plan and multidisciplinary teams, including psychological/psychiatric support, health education strategies, and adherence interventions may help cSLE teens to increase compliance with treatment [ 37 , 174 , 176 , 181 , 182 ].…”

Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus

“…Characteristics unique to cSLE make adherence particularly difficult, including number of medications, the complexity of medication regimens, medication-related organ damage, disease flares, and psychological manifestations [7,8]. For young adults with rheumatic diseases, adherence barriers include forgetfulness, polypharmacy, cost, personal problems, and/or refusal [9,10]. Specific to those with cSLE, medication-specific knowledge deficits and the lack of perceived improvement in daily symptoms are significant barriers to medication adherence [2,10,11].…”

“…For young adults with rheumatic diseases, adherence barriers include forgetfulness, polypharmacy, cost, personal problems, and/or refusal [9,10]. Specific to those with cSLE, medication-specific knowledge deficits and the lack of perceived improvement in daily symptoms are significant barriers to medication adherence [2,10,11]. In addition, real or perceived side effects, low medication literacy, and/or poor medication taste were identified as adherence barriers in cSLE.…”

Health‐Related Quality of Life Measures in Childhood‐Onset Systemic Lupus Erythematosus

“…A randomized trial assessing the feasibility and acceptability of automated digital reminders and a personalized prescribed treatment plan in young adults with cSLE assessed baseline pain intensity and fatigue using the PROMIS‐SFs for pain intensity and fatigue (63). The fatigue PROMIS‐SF was also an outcome measure in an observational study assessing self‐management and adherence in adolescents and young adults with cSLE (64).…”