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Stacie Bell, PhD, discusses the disagreement between adolescents and parents regarding how lupus impacts daily life.
In an interview with HCPLive, Stacie Bell, PhD, executive vice president of Lupus Therapeutics, the clinical research affiliate of the Lupus Research Alliance, expands on the results of a recent study analyzing the agreement between parent- and self-report of executive function in patients with childhood-onset systemic lupus erythematosus (SLE), with an emphasis on the significant differences observed between groups regarding the lived experience.1 For example, if an adolescent is living with lupus, their perception, especially concerning executive function and its impact on their daily life, may drastically contrast with appearances.
As a parent of 2 adolescent daughters, Bell can attest their experiences—interactions with teachers, friends, academic challenges, and participation in activities—would vastly differ from her perspective.
Understanding these nuances is crucial, not just for the adolescent to receive better care but also for them to express and articulate their experiences effectively. It's essential for anyone interacting with the adolescent—be it in their school, healthcare, or provider environment—to realize their unique perspective and challenges.
The best way to understand the lived experiences of lupus, she explained, is by listening to those who live with it daily. Patient-reported outcomes incorporated into clinical studies give voice to these experiences during treatment evaluation. These outcomes go beyond daily experiences, delving into disease progression, hopes, thoughts, and emotional impacts. They measure various aspects, from fatigue to clinical expressions of the disease, shedding light on its emotional and daily toll. Additionally, there are numerous patient-reported outcomes available, and ongoing efforts aim to develop outcomes designed to capture the patient's voice.
When considering patient-reported outcomes, their integration into the clinical trial process is essential. Recognizing these voices across therapeutic areas is gaining traction, even by regulatory bodies like the US Food and Drug Administration (FDA), ensuring these voices are central to clinical development and care.
There's often disagreement between adolescents and parents regarding how lupus impacts daily life. While some aspects align, differences exist, particularly in how adolescents perceive the impact of executive function compared to parents. It's important for clinicians and parents to understand the daily experiences of individuals with lupus. Clinically, when adolescents visit healthcare providers, integrating the patient's voice into evaluations becomes crucial. Acknowledging this disconnect between parents and adolescent patients is vital for healthcare providers, ensuring they listen and prioritize the individual living with lupus in assessments and decision-making processes.