Sleep disturbances and dermatology-related quality of life in children with cutaneous mastocytosis: a patient-centered perspective

Pediatric cutaneous mastocytosis is a heterogeneous mast cell disorder that typically presents as cutaneous disease with a benign and self-limiting course. Despite its favorable prognosis, children with cutaneous mastocytosis may experience symptom-related effects on daily functioning that have not been comprehensively characterized. Data on sleep disturbances and QoL in pediatric cutaneous mastocytosis, unfortunately, remain limited. This study aimed to evaluate the relationship between sleep parameters and dermatology-related QoL and assess whether disease severity modifies the association between sleep disturbances and QoL. Thirty-five children with confirmed cutaneous mastocytosis and 50 healthy controls were enrolled. Disease severity was assessed with SCORing MAstocytosis (SCORMA) Index. Sleep characteristics were evaluated with Children's Sleep Habits Questionnaire (CSHQ), and dermatology-related QoL was assessed with Children's Dermatology Life Quality Index (CDLQI). Children with cutaneous mastocytosis exhibited significantly higher total CSHQ scores compared with controls (median 47.0 vs 39.0, respectively) (p = 0.004), with a markedly higher proportion exceeding the clinical screening threshold for sleep disturbance (85.7% vs 31.4%, respectively) (p < 0.001). Patients demonstrated increased bedtime resistance, sleep anxiety, night wakings, parasomnias, and daytime sleepiness. CDLQI impairment was generally mild, with 94.2% of patients reporting no or small impact. CDLQI scores correlated strongly with SCORMA scores (ρ = 0.57, p < 0.001) but were not significantly associated with overall sleep disturbance. CONCLUSION: Children with cutaneous mastocytosis frequently exhibit sleep disturbances, whereas the impact on dermatology-related QoL was generally mild in most patients. Notably, sleep problems were highly prevalent even when dermatology-related QoL impact was minimal, indicating that dermatology-specific QoL instruments may not fully capture the sleep-related burden of pediatric cutaneous mastocytosis. These findings support the integration of routine sleep and dermatology-related QoL screening into the comprehensive management of pediatric cutaneous mastocytosis. WHAT IS KNOWN: • Cutaneous mastocytosis in children generally has a favorable prognosis, but symptoms such as pruritus and flushing may affect daily functioning. • Data regarding sleep disturbances and dermatology-related quality of life in pediatric cutaneous mastocytosis are limited. WHAT IS NEW: • Children with cutaneous mastocytosis had significantly more sleep disturbances than healthy controls, with most patients exceeding the clinical screening threshold for sleep problems. • Sleep disturbances were common even among patients reporting minimal impairment in dermatology-related quality of life, suggesting that dermatology-specific QoL measures may underestimate disease burden.