Development and Validation of a Parenting Stress Module for Parents of Children Using Cochlear Implants.

OBJECTIVES: The purpose of this study was to develop and validate a cochlear implant (CI)-specific parenting stress measure using the FDA Guidance on Patient-Reported Outcomes (2009). METHODS: The development and psychometric validation of the Parenting Stress-CI module for both the Early Childhood (EC; 0-5 years) and School-Age (SA; 6-12 years) versions are reported in this article. Instrument development consisted of qualitative interviews with parents of children with CIs (EC: N = 19; SA: N = 21), content analysis, item development, and cognitive testing of the instrument. Last, we conducted the psychometric validation (EC: N = 72; SA: N = 64), including analyses of internal consistency, test-retest reliability (∼2 weeks between administrations; N = 24), and convergent validity with the Parenting Stress Index-4 (PSI-4). RESULTS: The final EC version includes 15 questions, and the SA version includes 8 questions. Both the EC and SA versions had strong reliability (EC α = .88; SA α = .85), with all items significantly correlated with the overall module (r = .43-.80). Both versions also had strong test-retest reliability (r = .99, p < .001). Last, analyses of convergent validity demonstrated significant correlations with the PSI-4 Total Stress scale for both Parenting Stress-CI versions (EC r = .66, p < .00; SA r = .45, p < .001). CONCLUSIONS: The Parenting Stress-CI modules are reliable and valid condition-specific parenting stress instruments for parents of children with CIs ages 0-12 years, filling a significant gap in the literature. These fully validated instruments can be used to assess parental needs for support and guide the development of targeted, family centered interventions.

Quality of Life-CI: Development of an Early Childhood Parent-Proxy and Adolescent Version.

OBJECTIVES: Severe to profound hearing loss is associated with communication, social, and behavioral difficulties that have been linked to worse health-related quality of life (HRQoL) compared to individuals with normal hearing. HRQoL has been identified as an important health outcome that measures functional ability, particularly for chronic conditions and disabilities. The current study developed the QoL-cochlear implant (CI) for early childhood and adolescents using the recommended Food and Drug Administration and European Medicines Agency guidelines on patient-reported outcomes. DESIGN: Three phases of instrument development were conducted for both the early childhood (0 to 5 years old; parent proxy) and adolescent/young adult (13 to 22 years old) versions of the QoL-CI. Phase 1 included the development of our conceptual framework, which informed the discussion guides for stakeholder focus groups (e.g., audiologists, physicians, and therapists) at CI clinics in Miami and Philadelphia (n = 39). Open-ended interviews with parents (N = 18 for early childhood; N = 6 for adolescent/young adult version) and adolescents/young adults using CIs (n = 17) were then completed at both sites during phase 2. All interviews were transcribed and coded to identify common themes, which were then used to draft items for the QoL-CI. Both versions of the QoL-CI were developed using Qualtrics to allow for quick, easy electronic administration of the instruments on a tablet device. Last, phase 3 included cognitive testing in a new sample (N = 19 early childhood, N = 19 adolescent) to ensure that the draft instruments were clear, comprehensive, and easy to use. RESULTS: Participant responses obtained via the open-ended interviews yielded an early childhood and adolescent version of the QoL-CI that was reportedly easy to complete and comprehensive. The final QoL-CI Early Childhood instrument yielded 35 questions across eight functional domains (environmental sounds, communication, social functioning, behavior, CI device management and routines, school, CI benefits, and early intervention). Similarly, the final QoL-CI adolescent/young adult version consisted of 46 items across eight domains (noisy environments, communication, CI usage and management, advocacy, social functioning, emotional functioning, acceptance, and independence). CONCLUSIONS: The QoL-CI is a condition-specific QoL instrument that can be used for children ages birth through 22 years. These instruments capture the "whole" child by not only focusing on communication and auditory skills but also academic, social and emotional functioning. Once validated, these CI-specific measures will enable providers to track long-term outcomes and evaluate the efficacy of new interventions to improve overall CI use and QoL for pediatric and young adult users.

Costs of Severe to Profound Hearing Loss & Cost Savings of Cochlear Implants.

OBJECTIVE: To estimate costs of severe to profound hearing loss, including costs and cost-savings associated with cochlear implantation. METHODS: Data was obtained from the National Health Interview Survey, the National Health and Nutrition Examination Survey and national Medicare rates. We used continuous time state transition models with individual patient simulations to estimate the costs of severe to profound hearing loss (SPHL) across the lifespan. The model included four states, normal hearing, severe to profound hearing loss, cochlear implantation, and death. RESULTS: The estimated lifetime cost of an individual born with SPHL is $489,274 [377,518; 616,519]. Costs are lower for those who received a cochlear implant before 18 months of age $390,931 [311,976; 471,475], compared to those who are not implanted $608,167 [442,544; 791,719]. For individuals with a later onset of hearing loss (60 years old) lifetime costs were $154,536 [7,093; 302,936]. The annual societal costs for the US population were estimated to be $37 [8; 187] billion. CONCLUSIONS: SPHL is a costly condition, with the primary driver being lost productivity. Medical costs were higher for cochlear implantation, however, the higher income earnings offset the higher medical costs. Overall, early implantation substantially reduced lifetime costs. Access to hearing health care and technology is critical given the documented benefits for language, education, and quality of life. Government and insurance policies should be modified to allow for equal access and coverage for hearing technology, which will ultimately reduce lifetime and societal costs. LEVELS OF EVIDENCE: N/A The current study used existing nationally representative datasets. Thus, these levels of evidence do not apply. Laryngoscope, 2024.

Cochlear Implantation and Educational and Quality-of-Life Outcomes in Adolescence.

Importance: Cochlear implants (CIs) have been shown to be effective in improving auditory skills and speech and language development. However, less is known about the long-term outcomes of CIs on educational functioning or quality of life. Objective: To evaluate long-term educational outcomes and quality of life in adolescents over 13 years postimplantation. Design, Setting, and Participants: This longitudinal cohort study included 188 children with bilateral severe to profound hearing loss with CIs from the Childhood Development After Cochlear Implantation (CDaCI) study from hospital-based CI programs; a cohort of 340 children with severe to profound hearing loss without CIs from a nationally representative survey (National Longitudinal Transition Study-2; NLTS-2), and results from the literature of comparable children without CIs. Exposure(s): Cochlear implantation (early and late). Main Outcomes and Measures: Adolescent performance on measures of academic achievement (Woodcock Johnson), language (Comprehensive Assessment of Spoken Language), and quality of life (Pediatric Quality of Life Inventory, Youth Quality of Life Instrument-Deaf and Hard of Hearing). Results: The CDaCI cohort included 188 children, 136 of whom completed the wave 3 postimplantation follow-up visits (77 [55%] female) with CIs; mean [SD] age was 11.47 [1.27] years. The NLTS-2 cohort included 340 children (50% female) with severe to profound hearing loss without CIs. Children with CIs had better academic performance compared with children without CIs with similar levels of hearing loss. The largest benefits were seen for children who received implants early (prior to age 18 months), who performed at or above age and gender norms for language and academic achievement. Similarly, adolescents with CIs reported better quality of life on the Pediatric Quality of Life Inventory compared with children without CIs. On a condition-specific measure (Youth Quality of Life Instrument-Deaf and Hard of Hearing), children who received implants early scored higher across all 3 domains than comparisons without CIs. Conclusions and Relevance: To our knowledge, this is the first study to evaluate long-term educational outcomes and quality of life in adolescents using CIs. This longitudinal cohort study showed better outcomes of CIs in terms of language, academic performance, and quality of life. While the greatest benefits were observed for children who received implants before age 18 months, benefits were also noted for children who received implants later, providing evidence that children with severe to profound hearing loss with CIs can achieve at or above expected levels compared with hearing peers.

Parenting Stress, Self-Efficacy, and Involvement: Effects on Spoken Language Ability Three Years After Cochlear Implantation.

OBJECTIVE: This study evaluated associations among parenting stress, self-efficacy, and involvement in relation to spoken language outcomes in young children 3 years following cochlear implantation. STUDY DESIGN: Cross-sectional. SETTING: Six university tertiary medical centers. PATIENTS: One hundred sixty-four young children with bilateral, severe-to-profound sensorineural hearing loss who had 3 years of experience with a CI; children with substantial cognitive impairments were excluded from the study. MAIN OUTCOME MEASURESS: Family Stress Scale (FSS), Scale of Parental Involvement and Self-Efficacy (SPISE), Oral and Written Language Scales (OWLS). RESULTS: Correlations were of moderate strength between FSS scores and SPISE scores (Parental Self-Efficacy, r = -0.45, p < 0.01, Parental Involvement r = -0.32, p < 0.01). As hypothesized, parents reporting higher levels of stress reported lower perceptions of self-efficacy and involvement. In addition, results showed that family stress had a direct, negative effect on spoken language (-4.43 [95% confidence interval: -6.97; -1.89]). After controlling for maternal education and activation age, parental self-efficacy mediated the negative effect between family stress and spoken language (indirect effect = -1.91 [3.45; -0.69]; proportion mediated = 0.43). No mediating effects were found for parental involvement. CONCLUSIONS: These findings highlight the need for parenting interventions that focus on reducing stressors and increasing parents' perceptions of self-efficacy in families of children using cochlear implants. Integration of mental health screening and tailored parenting interventions in CI clinics may increase parental self-efficacy and involvement, with measurable benefits in the child's use of spoken language.