Exploring the Experiences of Adults With Microtia: A Qualitative Study

Hamlet, Claire; Harcourt, Diana

doi:10.1177/1055665620931611

Cited by 11 publications

(12 citation statements)

References 30 publications

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“…27 The ongoing impact of hearing difficulties was reported by caregivers, 18 adolescents and young adults, 14 and adults, particularly in work settings (N = 15). 15…”

Section: Resultsmentioning

confidence: 99%

“…27 The ongoing impact of hearing difficulties was reported by caregivers, 18 adolescents and young adults, 14 and adults, particularly in work settings (N = 15). 15 Diagnostic experiences. Formative experiences of learning of diagnosis, etiology beliefs, and related suggestions for providers have been described in several samples, including Dutch parents (N = 84) 28 ; primarily Latinx parents in the United States (n = 87), 17 mothers in 3 US states (N = 20), 20 and an international online group of English-speaking caregivers (n = 42).…”

Section: Healthcare Experiencesmentioning

confidence: 99%

“…14 As adults, ongoing anxiety about their ears being seen in different settings was reported in a UK study. 15 Norwegian adults with CFM also reported negative social experiences, such as teasing, and discussed ways they continue to cope with social situations to feel a greater sense of belonging. 25 Behavioral adjustment.…”

Section: Psychosocial Experiencesmentioning

confidence: 99%

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

Johns

Stock

Costa

et al. 2022

The Cleft Palate Craniofacial Journal

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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.

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“…27 The ongoing impact of hearing difficulties was reported by caregivers, 18 adolescents and young adults, 14 and adults, particularly in work settings (N = 15). 15…”

Section: Resultsmentioning

confidence: 99%

Section: Healthcare Experiencesmentioning

confidence: 99%

See 1 more Smart Citation

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

Johns

Stock

Costa

et al. 2022

The Cleft Palate Craniofacial Journal

View full text Add to dashboard Cite

show abstract

“…Individuals born with microtia and outer ear anomalies are at increased risk of psychological stress during their lifetime. , Ear anomalies could potentially be addressed with timely reconstructive procedures . However, reconstructive surgery using autologous cartilage is complex and demands advanced surgical skills .…”

Section: Discussionmentioning

confidence: 99%

Tissue Engineering the Pinna: Comparison and Characterization of Human Decellularized Auricular Biological Scaffolds

Al‐Qurayshi

Wafa

Meyer

et al. 2021

ACS Appl. Bio Mater.

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Decellularization is one of the promising techniques in tissue engineering used to create a biological scaffold for subsequent repopulation with the patient’s own cells. This study aims to compare two different decellularization protocols to optimize the process of auricle decellularization by assessing and characterizing the decellularization effects on human auricular cartilage. Herein, 12 pairs (8 females, 4 males) of freshly frozen adult human cadaveric auricles were de-epithelialized and defatted leaving only the cartilaginous framework. An auricle from each pair was randomly assigned to either protocol A (latrunculin B-based decellularization) or protocol B (trypsin-based decellularization). Gross examination of the generated scaffolds demonstrated preservation of the auricles’ contours and a change in color from pinkish-white to yellowish-white. Hematoxylin and eosin staining demonstrated empty cartilaginous lacunae in both study groups, which confirms the depletion of cells. However, there was greater preservation of the extracellular matrix in auricles decellularized with protocol A as compared to protocol B. Comparing protocol A to protocol B, Masson’s trichrome and Safranin-O stains also demonstrated noticeable preservation of collagen and proteoglycans, respectively. Additionally, scanning electron micrographs demonstrated preservation of the cartilaginous microtopography in both study groups. Biomechanical testing demonstrated a substantial decrease in Young’s modulus after decellularization using protocol B (1.3 MPa), albeit not significant ( P -value > 0.05) when compared to Young’s modulus prior to decellularization (2.6 MPa) or after decellularization with protocol A (2.7 MPa). A DNA quantification assay demonstrated a significant drop ( P -value < 0.05) in the DNA content after decellularization with protocol A (111.0 ng/mg) and protocol B (127.6 ng/mg) in comparison to before decellularization (865.3 ng/mg). Overall, this study demonstrated effective decellularization of human auricular cartilage, and it is concluded that protocol A provided greater preservation of the extracellular matrix and biomechanical characteristics. These findings warrant proceeding with the assessment of inflammation and cell migration in a decellularized scaffold using an animal model.

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“…Moderate‐to‐severe hearing loss is frequent in the context of A/M (Mandelbaum et al, 2017). This, coupled with the high burden of co‐occurring birth defects, the necessity for reconstructive surgery (Bly et al, 2016), psychosocial challenges manifesting across the life course (Hamlet & Harcourt, 2020; Li et al, 2010), and lack of modifiable risk factors make A/M a public health concern. Our objectives were to: (1) identify factors associated with nonsyndromic A/M overall as well as isolated, nonisolated, unilateral, and bilateral A/M specifically; and (2) determine whether the birth prevalence of nonsyndromic A/M in Texas changed during the study period, using data from a large, population‐based birth defects registry.…”

Section: Introductionmentioning

confidence: 99%

Factors associated with nonsyndromic anotia and microtia, Texas, 1999–2014

Schraw

Woodhouse

Benjamin

et al. 2022

Birth Defects Research

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Background: Few risk factors have been identified for nonsyndromic anotia/ microtia (A/M).Methods: We obtained data on cases and a reference population of all livebirths in Texas for 1999-2014 from the Texas Birth Defects Registry (TBDR) and Texas vital records. We estimated prevalence ratios (PRs) and 95% confidence intervals (CIs) for A/M (any, isolated, nonisolated, unilateral, and bilateral) using Poisson regression. We evaluated trends in prevalence rates using Joinpoint regression. Results: We identified 1,322 cases, of whom 982 (74.3%) had isolated and 1,175 (88.9%) had unilateral A/M. Prevalence was increased among males (PR: 1.3, 95% CI: 1.2-1.4), offspring of women with less than high school education (PR: 1.3, 95% CI: 1.1-1.5), diabetes (PR: 2.0, 95% CI: 1.6-2.4), or age 30-39 versus 20-29 years (PR: 1.2, 95% CI: 1.0-1.3). The prevalence was decreased among offspring of non-Hispanic Black versus White women (PR: 0.6, 95% CI: 0.4-0.8) but increased among offspring of Hispanic women (PR: 2.9, 95% CI: 2.5-3.4) and non-Hispanic women of other races (PR: 1.7, 95% CI: 1.3-2.3). We observed similar results among cases with isolated and unilateral A/M. Sex disparities were not evident for nonisolated or bilateral phenotypes, nor did birth prevalence differ between offspring of non-Hispanic Black and non-Hispanic White women. Maternal diabetes was more strongly associated with nonisolated (PR: 4.5, 95% CI: 3.2-6.4) and bilateral A/M (PR: 5.0, 95% CI: 3.3-7.7).Crude prevalence rates increased throughout the study period (annual percent change: 1.82). Conclusion:We identified differences in the prevalence of nonsyndromic A/M by maternal race/ethnicity, education, and age, which may be indicators of unidentified social/environmental risk factors.

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Exploring the Experiences of Adults With Microtia: A Qualitative Study

Cited by 11 publications

References 30 publications

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

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

Tissue Engineering the Pinna: Comparison and Characterization of Human Decellularized Auricular Biological Scaffolds

Factors associated with nonsyndromic anotia and microtia, Texas, 1999–2014

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