Medical Home Care for Children with Deafness and Hearing Problems.

BACKGROUND AND OBJECTIVES: Since 2001, the American Academy of Pediatrics (AAP) has advocated for improving the effectiveness of early hearing screening, diagnosis, and intervention (EHDI) and reducing hearing health disparities through the medical home model of care (MHMOC). However, the scope of the MHMOC and its components and potential disparities among US children with deafness or hearing problems (DHH) have not been identified. METHODS: Data from the 2016 to 2020 National Survey of Children's Health (N = 174 551) were analyzed, including 12 121 children with DHH, 171 523 children without DHH, and 38 722 with other special health needs (SHCN). Univariable statistics and multivariable logistic regression were used to analyze the association of hearing problems with medical home composite and components and cohort disparities. RESULTS: After adjusting for sociodemographic characteristics, medical home care was less likely for children with DHH (adjusted odds ratio: 0.74; 95% confidence interval: 0.56-0.97) compared with children without DHH. Children with DHH and SHCN were also less likely to receive medical home care compared with other SHCN children (adjusted odds ratio: 0.71; 95% confidence interval: 0.55-0.92). Specific medical home components significantly less prevalent among children with DHH included family-centered care, ease of referrals, and effective care coordination, whereas a usual source for sick care was more prevalent, although not statistically significant. CONCLUSIONS: Despite over two decades of efforts to improve EHDI through the medical home, rates of the MHMOC for children with DHH remain disparately low. Systems-level quality improvement efforts supporting the medical home will be necessary to allow the MHMOC to support early hearing detection and intervention (EHDI) systems.

Geographic, Sociodemographic, and Clinical Factors Associated With Parental Self-Efficacy in Pediatric Patients With Hearing Loss.

OBJECTIVE: To identify geographic, sociodemographic, and clinical factors associated with parental self-efficacy in a diverse cohort of deaf or hard-of-hearing (DHH) children. STUDY DESIGN: Cross-sectional study. SETTING: Tertiary children's hospital. METHODS: Four hundred forty parents of DHH children aged 0 to 17 completed the 25-item Scale of Parental Involvement and Self-Efficacy (SPISE) survey from 2014 to 2022. Residential addresses were geocoded and assigned Area Deprivation Index and Social Vulnerability Index rankings, and univariable and multivariable analyses were conducted using sociodemographic and clinical variables, including sex, race/ethnicity, insurance type, survey language, age at the survey, comorbidities, newborn hearing screening results, and hearing loss laterality and severity. RESULTS: Compared to English and Spanish-speaking parents, Chinese-speaking parents were associated with overall lower parental self-efficacy and involvement (regression coefficient = -0.518, [-0.929, -0.106]), Cohen's d = 0.606) and lower scores on items related to their ability to affect multiple aspects of their child's development and expression of thoughts as well as competency in checking and putting on their child's sensory device. Across univariable and multivariable analyses, besides Chinese language, all other sociodemographic, clinical, and geographic variables were not associated with SPISE score. CONCLUSION: To achieve the best patient outcomes, care teams can use the SPISE to evaluate parental self-efficacy and provide targeted support to parents at risk for having lower knowledge and confidence scores about critical skills necessary to facilitate their child's auditory access and language development. Notably, this study found similar reports of parental efficacy across various sociodemographic, clinical, and geographic variables but significantly lower SPISE scores in Chinese-speaking families.

Sociodemographic Disparities in Educational Services in Children who are Deaf or Hard of Hearing.

OBJECTIVE: Examine the association between sociodemographic factors and Individualized Education Program (IEP) establishment. DESIGN: Retrospective cohort study. SETTING: Tertiary referral center. METHODS: Participants included deaf or hard-of-hearing children who were eligible for an IEP with "deafness" or "hard of hearing" as a primary or secondary disability. Primary outcome measures were time intervals between initial referral for services and parental consent; parental consent to determination of eligibility; and initial referral to eligibility (the sum of the previous 2 intervals). Student's t tests and linear regression were used to examine the association between sociodemographic factors and the primary outcome variables. RESULTS: Of the 88 participants, 51 (58%) were male, 45 (51%) were from underrepresented minority (URM) groups, 35 (40%) spoke a primary language other than English, and 53 (60%) utilized public insurance. IEP establishment was significantly delayed in participants who required an English-language interpreter. Most of the delay occurred in the time between the initial referral and parental consent (mean: 115 vs 37 days, P = .02). There were also significant delays from the time of referral for services to eligibility in URM participants (mean: 159 vs 85 days, P = .04). Significant delays were also associated with Minority Status and Language within social vulnerability index percentile rankings. CONCLUSION: This study found that IEP establishment was delayed in both URM participants and those who required an English-language interpreter. These results highlight the importance of clear communication between the school system and caregivers in the IEP establishment process, particularly with families who require an English-language interpreter or identify as URM.

Risk Factors Associated with Delays in Hearing Loss Identification in Pediatric Patients.

OBJECTIVE: To identify sociodemographic factors associated with pediatric late-identified hearing loss (LIHL) and classify novel subgroups within the LIHL population. STUDY DESIGN: Retrospective cohort. SETTING: Tertiary children's hospital. METHODS: Our cohort included children with permanent hearing loss (HL) between 2012 and 2020 (n = 1087). Patients with early-identified HL were compared to patients with LIHL (>6 months of age at diagnosis), and 3 subgroups: (1) late-identified congenital HL: failed NHS but had a diagnostic audiogram >6 months old; (2) late-onset HL: passed NHS and identified with HL after 6 months old; (3) late-identified, unknown-onset: unknown NHS results, identified after 6 months old. Geospatial analysis was performed using ArcGIS Pro. RESULTS: Compared with early-identified children, children with LIHL were more likely to have more comorbidities (odds ratio [OR] = 1.12, [1.01, 1.23]), be an under-represented minority (URM) (OR = 1.92, [1.27, 2.93]) and have a higher social vulnerability index (SVI) (adjusted odds ratio [AOR] = 2.1, [1.14, 3.87]). However, subgroups in the LIHL cohort had variable associations. Children with late-identified unknown onset hearing loss were uniquely associated with a primarily non-English speaking household (AOR = 1.84, [1.04, 3.25]), whereas children with late-onset hearing loss were less likely to have public insurance (AOR = 0.47, [0.27, 0.81]. There were no significant associations for children with late-identified congenital hearing loss. Neighborhood disadvantage, as measured by SVI, had an increased association with late-identified unknown onset HL (AOR = 4.08, [2.01, 8.28]) and a decreased association with late-onset HL (AOR = 0.40, [0.22, 0.72]). CONCLUSION: Sociodemographic factors serve as proxies for health care access, and these factors vary across LIHL pathways. Understanding the risk factors associated with each LIHL subgroup may help address disparities in pediatric HL identification.

Sociodemographic Disparities and Hearing-Related Quality of Life in Children With Hearing Loss.

This cohort study assesses the association of sociodemographic differences with quality of life in deaf and hard-of-hearing children and adolescents in the US.

Hearing Impairment and School Engagement Outcomes in US Children.

Importance: Ensuring appropriate school engagement for deaf or hard of hearing (DHH) children in the US is important for improving their long-term outcomes as they grow into adults. Objective: To examine the associations between hearing loss (HL), its sequelae (speech and/or language disorders, behavioral and/or conduct problems, and neuropsychiatric and/or learning disorders), and various school engagement measures among school-aged children in the US. Design, Setting, and Participants: This cross-sectional study combined data from the nationally representative 2016-2021 National Survey of Children's Health. A total of 155 178 randomly selected children (weighted, approximately 49 340 700 children) aged 6 to 17 years with a parent or caregiver who responded to an address-based survey by mail or online were included. All analyses were weighted to account for the probability of selection and nonresponse and to reflect population-based estimates representative of all noninstitutionalized school-aged US children and adolescents residing in housing units. Main Outcomes and Measures: Diverse school engagement measures, including extracurricular participation in sports, clubs, paid work, volunteer work, and organized lessons, as well as educational performance variables, including missed school days, not caring about doing well in school, not doing required homework, grade repetition, and parent or guardian contacted by school. Results: Of the estimated 49 340 700 children aged 6 to 17 years (41.1% aged 6-10 years; 51.1% male; 54.7% without underrepresented minority status), an estimated 1.4% (95% CI, 1.2%-1.5%) were reported by their parent or guardian to have deafness or hearing problems. Having DHH status was associated with significantly worse outcomes on 8 of 10 school engagement measures (eg, participation in sports: adjusted odds ratio [AOR], 0.75 [95% CI, 0.60-0.93]; missed school days: AOR, 2.98 [95% CI, 2.21-4.00]), even after adjustment for age, sex, underrepresented minority status, highest educational level of parent or guardian, federal poverty level of the household, and primary language in the household. Moreover, although subgroup analyses of DHH children with and without HL sequelae revealed significant differences (speech and/or language disorder: AOR, 5.83 [95% CI, 4.31-7.89]; behavioral and/or conduct problem: AOR, 2.75 [95% CI, 2.10-3.60]; neuropsychiatric and/or learning disorder: AOR, 3.06 [95% CI, 2.39-3.91]), HL sequelae only partially mediated the associations between these disparities. Conclusions and Relevance: In this cross-sectional study, DHH status itself may have been the primary factor directly associated with school engagement disparities. These findings suggest the need for greater emphasis on educational accommodations and support for hearing status itself, independent of the presence or absence of HL sequelae.