Research

The Quality of Life – CI (QoL-CI) is a health-related quality of life instrument for pediatric cochlear implant (CI) users. Supported by the National Institute for Deafness and Other Communication Disorders (NIDCD) Dr. Cejas and colleagues developed 4 versions of the QOL-CI:

1. parents of children birth to five years
2. school-age children 6-12, plus a parent-proxy measure
3. adolescents ages 13-22 (R03DC014760). These instruments facilitate evaluation of the effectiveness of CI’s over time and
   identification of areas in need of further intervention. HRQoL measures capture how an individual feels, and functions across several domains, including emotional, social, and academic functioning.

These validated instruments were developed using the FDA guidance on development of patient reported outcomes. These measures are freely available in several languages.

For more information on how to access this measure, please visit the Resources page.

Dr. Cejas research lab has evaluated the effects of parenting behaviors on outcomes for children with hearing loss. Parents reporting higher levels of stress, report lower perceptions of self-efficacy and involvement. Family stress also has a direct negative impact on spoken language.

As a result of the literature, our research team developed and validated the Parenting Stress – Cochlear Implant (Parenting Stress – CI) questionnaire. Like with QoL-CI, the Parenting Stress – CI was developed using PRO guidance. There are two versions of the Parenting Stress – CI: 1) Early Childhood for parents of children ages birth – 5 and 2) School-Age for parents of children ages 6 – 12. Psychometric validation was completed and both versions had strong reliability (Early Childhood α=.88; School Age α=.85), with all items significantly correlated with the overall module. The final version of the Parenting Stress – CI Early Childhood measure has 15 questions and the Parenting Stress-CI School Age measure has 8
questions.

For more information on how to access this measure, please visit the Resources page.

Models of early language learning have emphasized the key role played by early caregiver interactions in facilitating communicative intent and attentional frames. Observational studies have shown that hearing mothers of young deaf children engage in more controlling, directive, and intrusive interactions and display less positive affect than mothers of hearing children. Our work has also shown that maternal sensitivity is a critical predictor of language development for children using cochlear implants, and was as important as age at implantation. Another critical influence on language learning is the quality of parent input, such as facilitative language techniques (FLTs). FLTs are strategies that parents and educators use to promote language in children who are deaf or have language delays.These techniques can be used with children from infancy through school-age, and can be tailored to the child’s age and language ability. Our large-scale, multi-center, longitudinal study (CDaCI; R01 DC04797) found that higher-level strategies were significantly associated with better expressive and receptive language 3 years post-implantation.

Based on our findings on maternal sensitivity and facilitative language techniques, our team developed Parent-Child Early Approaches to Raising Language Skills (PEARLS). PEARLS is a manualized parent training intervention that systematically coaches parents on maternal sensitivity and facilitative language techniques. This intervention was designed to be implemented by speech-language pathologists during standard auditory verbal therapy (AVT).

Brief Description of PEARLS

• 10 session intervention
• Focus on coaching parents on improving Maternal Sensitivity: The responsivity, respect for child’s autonomy and positive regard a parent shows their child
• Facilitative Language Techniques: Strategies parents and therapists can use to promote spoken language in deaf children
• Incorporated in weekly auditory-verbal therapy
• Tailored to each family and incorporates practice at home
• Manual available in English & Spanish

For more information on how to access PEARLS intervention, please visit the Resources page.

Severe to profound hearing loss (SPHL) can be a costly condition. Using data obtained from the National Health Interview Survey, the National Health and Nutrition Examination Survey and national Medicare rates, our team estimated the lifetime and societal costs of SPHL. To estimate the costs, continuous time state transition models with individual patient simulations were used. Costs can be broken down into 3 categories: Lost Productivity, Special Education Costs, and Medical Costs.

The Childhood Development after Cochlear Implantation study (CDaCI) study was a multicenter national cohort study of children with cochlear implants and children with typical hearing. All children were under 5 years old at the time of enrollment and were followed for 13 years. Dr. Cejas has work alongside the CDaCI Investigative team for nearly 20 years.

Some of the early work focused on the impact of childhood deafness on the development of visual and joint attention and novel noun learning. Further studies also evaluated that effects of hearing loss and cochlear implants on social competence. More recent work evaluated the long-term educational and quality of life outcomes for cochlear implant users. Our work has consistently highlighted that children who receive cochlear implants early have better overall outcomes. Specifically, children implanted prior to 18 months of age had the highest levels of spoken language and educational outcomes in reading, writing and quality of life compared to non-implanted children with severe to profound hearing loss.