Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades

Abstract

This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction/Canaloplasty; and (5) Quality of Life and Patient Satisfaction. Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes.

Stakeholders’ Views on Information Needed in a Patient Decision Aid for Microtia Reconstruction

“… 35 Studies on ACC, PPE and OIP reconstructions have all reported benefits of treatment on psychosocial outcomes and teasing. 12 , 36 Unfortunately, little research has been done on the psychosocial functioning of patients with microtia who have not undergone ear reconstruction. However, a previous prospective study reported a better psychosocial functioning in patients with microtia who had not opted for reconstruction compared to the preoperative groups of patients who had undergone reconstruction.…”

Long‐pulsed neodymium‐doped yttrium aluminum garnet for hair reduction in pediatric microtia repair

“…1 Multiple studies have documented the significant psychosocial impact that occurs with microtia, and team-based models of care are beginning to incorporate psychological and social services to address this important aspect of patient care. 2,3 Surgical reconstruction of the auricle is a mainstay of treatment to address psychosocial impacts of the condition. 2,4 Reconstruction occurs in multiple stages and can be done through autologous costal cartilage (ACC) or porous polyethylene implants.…”

“…2,3 Surgical reconstruction of the auricle is a mainstay of treatment to address psychosocial impacts of the condition. 2,4 Reconstruction occurs in multiple stages and can be done through autologous costal cartilage (ACC) or porous polyethylene implants. 5 In many cases, the reconstructed auricle may include hair-bearing skin of the scalp, motivating the use of laser epilation following reconstruction.…”

“…Microtia is a congenital ear malformation in 1–10 per 10,000 live births in which the auricle does not fully form, leading to hearing deficits 1 . Multiple studies have documented the significant psychosocial impact that occurs with microtia, and team‐based models of care are beginning to incorporate psychological and social services to address this important aspect of patient care 2,3 . Surgical reconstruction of the auricle is a mainstay of treatment to address psychosocial impacts of the condition 2,4 .…”

3D Printing Applications for Craniomaxillofacial Reconstruction: A Sweeping Review

“…A large portion of our self-identity is housed within facial features. Patients with facial differences as a result of cranio­maxillofacial (CMF) trauma, such as sports injuries and road accidents, congenital anomalies, infectious disease, tumor resection, or edentulism have reported associated stressors of self-acceptance, negative responses of others, and difficulty coping with associated impairments. − These associated impairments can include compromised sensory organ function, speech, and mastication . The field of CMF surgery treats a diverse range of ages and pathologies, both of which must be considered when CMF surgeons form and execute their surgical plan.…”