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

Abstract

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. (J Am Board Fam Med 2015;28:750 -758.)

Management and outcome of spontaneous subaponeurotic fluid collections in infants: the Hospital for Sick Children experience and review of the literature

“…Some of the themes that emerged from the research included lack of provider awareness, concern about unnecessary diagnostic procedures, and parental anxiety regarding accusations of child abuse. 15 Hopefully, as increased physician awareness regarding this rare entity emerges, there will be improved understanding of the benign and self-resolving nature of SSFC, and a reduction in unnecessary diagnostic testing, child abuse investigations, inpatient admissions, and interventions.…”

Delayed subaponeurotic fluid collection on an infant’s head: Underreported case and review of the literature

“…[1][2][3][4][5][6][7][8][9][10][11][12][13][14][15][16] Since its rarity and limited cases reported around the world, many physicians never seen DSFCs before and may not recognize its clinical entity in the first place; Worthen et al published article concerning rare scalp mass that identified through a disease-specific blog, analyzing experiences of 69 families whose infants developed DSFCs. [17] Hopkins et al reported the first six cases of DSFCs that managed conservatively and one case was managed by a needle aspiration of the collection on two occasions when serosanguinous fluid was aspirated ×2 after diagnosis. [3] Schoberer et al [11] and Munjal and Kumar [8] reported one case managed by 2 times aspiration, since they observed the reaccumulation of the fluid.…”

Solving the Mystery of a 1-Month-Old Infant With Scalp Swelling: Search the Literature First

“…Seventy-five percent of infants were evaluated in a primary care setting and 38% in the ED. 1 All participants reported that providers were unaware of the clinical features of SFC, which led to imaging in 100% of cases and included exposure to radiation (53% cases), repeated evaluation, and in some cases referral to specialists and/or suspicion of child abuse (9 cases). 1 Many responders felt medical evaluation increased rather than relieved their concerns.…”