Patient and Caregiver Perspectives on Clinical Care, Comprehensive Support, and Communication in Langerhans Cell Histiocytosis Management

ABSTRACT Background Patient and caregiver perspectives are becoming more commonly represented in medical literature, though they are not always present for rare conditions, such as Langerhans cell histiocytosis (LCH). This study was performed to explore patient and parental perspectives regarding treatment, psychosocial support, and unaddressed healthcare needs in children diagnosed with LCH. Methods Four focus group discussions (FGDs) were held with six adolescents with LCH, as well as eight caregivers. Participants were recruited from a single tertiary pediatric academic medical center. Native English speakers representing recurrent and non‐recurrent disease were included using consecutive sampling recruitment. FGDs were designed to elicit thematic factors experienced at diagnosis, during treatment, and during surveillance for LCH. Key themes and concepts were identified and classified using the methodological orientation of grounded theory. The cross‐platform application Dedoose was used to analyze the qualitative data. Results Seven major themes were identified: (1) the impact of LCH diagnosis and treatment on one's education and school experience; (2) the impact of the medical and healthcare system on one's experience; (3) the need for support and information for families; (4) the impact of LCH on family dynamics; (5) lack of knowledge and understanding before and after diagnosis; (6) emotional responses and coping strategies; and (7) communication challenges related to its lack of classification as a cancer. Conclusions These patient and caregiver perspectives provide opportunities to improve the experience of individuals with LCH throughout diagnosis, treatment, and surveillance. These accounts should be heavily considered when developing, altering, or customizing treatment plans for patients with LCH moving forward.