Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives

Abstract

Objective To identify perceived health literacy (HL) and patient activation (PA) needs during the transition from pediatric to adult rheumatology among patients with childhood‐onset systemic lupus erythematosus (cSLE). Methods Semistructured interviews of patients and health care professionals were conducted from November 2019 through May 2020, until thematic saturation was achieved. Interviews were audio‐recorded, transcribed, coded, and analyzed using thematic analysis. Results Thirteen post‐transition adult female participants with cSLE were recruited from a public safety‐net hospital system or from private practice. Thirteen health care team members were recruited from two pediatric and four adult rheumatology clinical sites serving patients in the same metropolitan area. Patients and health care team members acknowledged numerous HL components as important to transition, including language fluency, education, SLE‐specific knowledge, self‐efficacy, and accurate knowledge of personal medical history. Our interviews found PA to be an important component of the transition process, driven by internalization of the implications of cSLE diagnosis, self‐education, autonomy, introspection, and trustworthy doctor–patient relationships. Patients valued access to their online electronic medical record, recommended multimodal SLE‐specific education materials, and desired increased access to social workers. Health care team members stressed the importance of early preparation for transition and use of mobile medical applications and endorsed interventions such as lupus camp and increased partnership with psychologists and social workers. Conclusion HL and PA are perceived by patients and health care team members as substantially influencing transition success. Further research is needed to evaluate whether interventions to improve HL and PA positively influence cSLE transition outcomes.

Evaluation of health literacy and its association with medication adherence and quality of life in childhood-onset systemic lupus erythematosus

“… 11 Limited research in cSLE demonstrates a high prevalence of inadequate health literacy 12 while studies in adult-onset lupus show that patients with low health literacy have poor lupus-specific knowledge, and higher health literacy has been shown to influence successful transition to adult care among patients with cSLE. 13 , 14 However, health literacy in youth with cSLE and its relation to medication adherence and quality of life is poorly understood.…”

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

“…In addition, studies describe how disease activity, anxiety, social support, sleep quality, and fatigue negatively impact quality of life (QOL) in aSLE [ 17 , 18 ]. In cSLE, much of the focus has been on treatment targets [ 8 ], adherence [ 19 , 20 ], health literacy and/or knowledge deficits [ 21 ], and the challenges of disease management [ 22 ]. Previous studies in other pediatric rheumatological conditions have demonstrated significant disruptions to the trajectory of young people’s lives, impacts on relationships, effects on self-esteem, and the creation of more challenges for children and young people (CYP) in day-to-day life [ 23 , 24 ].…”