Experiences of Parents Caring for Infants with Rare Scalp Mass as Identified through a Disease-Specific Blog.

BACKGROUND: Delayed subaponeurotic fluid collection (DSFC) is a self-limited disorder of unknown etiology characterized by a benign, fluid-filled mass in the subaponeurotic layer of an infant's scalp. While a few case series describe DSFC, the experiences of families whose infants develop this condition have not previously been reported.
METHODS: We used a disease-specific blog to evaluate the experiences of 69 families affected by DSFC. We identified self-reported clinical features of DSFC and qualitatively analyzed the families' experiences with obtaining a diagnosis and care for their infants.
RESULTS: Infants presented in several clinical settings, and multiple diagnostic procedures were administered, including ultrasound (46%), computed tomography (30%), and head radiography (22%). Qualitative themes emerged: lack of provider awareness of DSFC, concern about potentially harmful diagnostic procedures, suspicion of child abuse, and the importance of the website in providing support to families.
CONCLUSIONS: Though DSFC can be diagnosed clinically and its natural history is benign, its presence can be emotionally draining for parents. Physicians should be aware of this clinical entity to rapidly allay parental distress and avoid unnecessary procedures. Disease-specific blogs can help providers learn about rare diseases, contain useful clinical information for research, and can benefit patient care by providing social support for families. © Copyright 2015 by the American Board of Family Medicine.