Maternal Reports of Satisfaction with Care and Outcomes for Children with Microtia
Year: 2009
Type: article
Abstract: Sir: Microtia is characterized by hypoplasia of the external ear and narrowing of the external ear canal. It often requires surgical correction and can present with additional comorbid conditions. To date, little published information is available about treatment outcomes for this defect and accompanying conditions.1,2 Tanzer1 evaluated 43 ear reconstruction operations and reported few late postoperative complications, whereas Fraser and Watson2 studied 17 patients and found recurrent restenosis, skin graft failures, and hearing, speech, and psychiatric problems. Given the improvements in treatment,3 we queried mothers of children with microtia to identify their satisfaction with care received, additional comorbid conditions, and access to healthcare services for their children. Children with microtia and their mothers who resided in Arkansas, Iowa, or New York were identified from participants in the National Birth Defects Prevention Study, a population-based case-control study.4 Eligible children were delivered between January of 1998 and December of 2003 and were diagnosed with microtia but no additional major defects. Birth mothers of these children were asked to complete a computer-assisted telephone interview and results were summarized. The study protocol was approved by the institutional review boards in each state. Thirty-six eligible children were identified (seven in Arkansas, 11 in Iowa, and 18 in New York), and birth mothers for 20 children (55.6 percent) (three in Arkansas, six in Iowa, and 11 in New York) completed interviews. Most mothers reported being “very happy” with the appearance of their child, although they indicated a need for improvement in patient-provider interactions for information and support received at the time of the diagnosis and for answers received regarding microtia and treatment options (Table 1). Overall, 75 percent of mothers reported that their child received care from an organized specialty care team, but only one-half of mothers in New York (n = 6) reported such care (data not shown). Because of the younger age of the sample, only three children (15.0 percent) received ear operations (excluding tympanostomy), although no postoperative complications were reported; one child (5.9 percent) reportedly needed surgery in the previous year but did not receive it. Using a scale of 0 (poor) to 10 (excellent), mothers reported a mean quality score of 8.3 for all medical care received (data not shown).Table 1: Maternal Reports of Satisfaction with Care Received, Comorbid Conditions, and Access to Care for Their ChildWith regard to comorbid conditions, most children (90 percent) reportedly suffered hearing loss; however, only one child (5.6 percent) was fitted with a hearing aid (Table 1). Additional delays in development were also mentioned. Nearly all children (95 percent) reportedly had a primary care practitioner and each had healthcare coverage. Some children received additional care for behavioral or emotional problems (5 percent), speech therapy (60 percent), and learning problems (30 percent). In addition, most children (75 percent) were expected to need additional operations. In summary, mothers of children with microtia were generally satisfied with the care provided, although a need for increased access to an organized specialty care team, improved interactions with healthcare professionals, and a lack of hearing aids were identified. Despite the modest number of participants, our study is the first population-based assessment to measure the baseline needs among parents of children with microtia. Continued follow-up of this sample might provide additional insights into postoperative care and outcomes experienced by these children. Vijaya Kancherla, M.S. Paul A. Romitti, Ph.D. Department of Epidemiology College of Public Health The University of Iowa Iowa City, Iowa Peter C. Damiano, D.D.S., M.P.H. Department of Preventive and Community Dentistry College of Dentistry, and Public Health Policy Center The University of Iowa Iowa City, Iowa Charlotte M. Druschel, M.D., M.P.H. Congenital Malformations Registry New York State Department of Health Albany, N.Y. James M. Robbins, Ph.D. Department of Pediatrics University of Arkansas for Medical Sciences Little Rock, Ark. ACKNOWLEDGMENTS This work was supported by grant RO4/CCR-224375 from the National Foundation for Facial Reconstruction and the Centers for Disease Control and Prevention and by grant U50/CCU 713238 from the Centers for Disease Control and Prevention. The authors are grateful to the families who participated in this study. They thank the many individuals who contributed to this study, including April Austin, Whitney Burnett, Bettye Flowers, Stacey Hockett Sherlock, Sara Kizelnik-Freilich, Laura Mohr, Alex Reading, Margaret Tyler, and Tanner Wenzel.
Source: Plastic & Reconstructive Surgery
Language: English
Subfield: Surgery
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2071592366