Utah Families Express Frustration Over Hearing Evaluation

Editor: The Infant Hearing Screening Program has done a great job of ensuring that the vast majority of infants in the US are screened for hearing loss shortly after birth. But what happens following the screening? Is follow-up provided for those babies who fail the screening? What kind of information is provided to the families?

Parents in Utah are frustrated with their treatment following the discovery that their child has hearing loss. Here's the press release.

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A major revolution in the effort to improve outcomes in childhood hearing loss has been the implementation of universal newborn hearing screening, now mandated in 38 states. This program responds to the relatively high frequency of this condition and the inability of other providers to detect congenital hearing loss at an early age.

Consequently, the U.S. Department of Health and Human Services (HHS) has developed a 10-year health objectives plan that includes improving newborn screening to all infants, follow-up audiologic evaluations by three months of age, and a smooth transition to early intervention by six months of age four.

Little information is available on how parents view the guidelines established for an effective universal newborn hearing-screening program. A new study set out to determine how parents perceive the process to diagnose and treat their children with hearing loss. The questions include "Do they believe their child is receiving prompt testing to obtain the diagnosis? Are patients with hearing loss undergoing prompt intervention once the diagnosis is made? Are families satisfied with the overall process?"

The authors of "A Survey of Parental Views Regarding Their Child's Hearing Loss," are Albert H. Park MD, Jonathon Warner, Nanette Sturgill, MS, CCC-A, Stephen C. Alder PhD, all from the University of Utah, Salt Lake City, UT. Their findings are to be presented at the 109th Annual Meeting & OTO EXPO of the American Academy of Otolaryngology-Head and Neck Surgery Foundation, being held September 25-28, 2005, at the Los Angeles Convention Center, Los Angeles, CA.

Methodology: The records of all pediatric patients diagnosed with a sensorineural hearing loss (due to unknown reasons) between 2000 and 2004 who received treatment at the Primary Children's Medical Center (PCMC) in Salt Lake City were include in this study.

Families of these patients were sent a survey asking about their experiences with the testing and treatment of their child's sensorineural hearing loss. Questions included age of diagnosis, number of tests needed for diagnosis, presence and cause of delayed diagnosis, subspecialists seen, tests done to determine etiology, treatment recommended and problems if any with health coverage.

389 surveys were mailed to families in the sensorineural hearing loss audiology database. For this study, some 113 families responded to the survey. Statistical analysis was performed utilizing t-test, Chi Square, and Fisher Exact tests when indicated.

Results: One hundred thirteen of three hundred eighty-nine families questioned responded to the survey. Twenty-three percent of the families recalled that their child passed their newborn screening and 13 percent did not know the results of the newborn screening. When a child was not found to pass the initial screening tests, families remarked that the audiologists or labor and delivery nurses most commonly gave them the information for additional testing. More than 15 percent of the families noted that no one provided information for additional testing. Twenty percent of the patients who did not pass the screening reported that their pediatrician was not aware of their child's possible hearing loss. Thirty percent of that group underwent four or more audiologic tests prior to a diagnosis. Age at diagnosis was 7.1 ± 12.0 months in patients who did not pass their newborn screening (range birth to 60 months). The most common reason for delayed diagnosis was difficulty in obtaining an appointment with an audiologist (25.5 percent) followed by an inability to obtain a referral from the primary care physician and multiple screening testing (12.8 percent). Sixty-two percent of families had difficulties obtaining health coverage for their child's hearing aids. Fifty eight percent of families noted difficulties obtaining health coverage for their child's cochlear implants.

Conclusions

Despite the considerable accomplishments of the Utah Newborn Hearing Screening Program, the results of this survey indicate a significant degree of parental frustration and obstacles to prompt diagnosis and treatment. Fifteen percent of the respondents commented that no one provided information for additional hearing testing when their child did not pass the newborn screening.

The survey also found that delays in diagnosis were attributed to difficulties in obtaining an appointment with a pediatric audiologist, problems in obtaining a referral from the primary care physician, the ordering of multiple tests prior to obtaining a diagnosis, the presence of middle ear fluid, and poor medical advice.
The parental comments do emphasize the need for a better-coordinated effort from all members of the hearing community. Initial steps to address this need would include better early counseling of families during the screening process about the importance of early diagnosis and treatment of hearing loss, more emphasis on greater primary care involvement and education, greater availability of pediatric audiology services, a more streamlined diagnostic evaluation, and more participation from the otolaryngology community. Another important issue generated from the survey is the availability of hearing aids and cochlear implants. Both technologies have been established as effective treatments for pediatric hearing loss.

Unfortunately, the majority of health care companies in Utah do not provide coverage for these important devices. Until, health care coverage organizations start to provide these services, Utah families will continue to have problems obtaining this needed care.

In summary, a survey of more than 100 families in Utah revealed significant frustration and obstacles to prompt management of pediatric sensorineural hearing loss. The difficulties include limited audiology availability, delays in primary care physician referrals, and multiple and possibly unnecessary testing, delays from middle ear fluid and poor health care coverage. The researchers suggest that a national study should to be performed to determine whether the results of this study are more prevalent. The results of this survey indicate that a critical analysis of our paradigm for pediatric hearing loss evaluation and treatment may need to be done.