Testimony on Comparative Effectiveness Research
Shirley Russ, Department of Academic Primary Care Pediatrics, Cedars-Sinai Medical Center
Delivered Via Electronic Mail
Comments on AHRQ Comparative Effectiveness Program related to Children with Early Hearing Loss
Thank you for considering these comments
Comments on AHRQ Comparative Effectiveness Program.
Need for Comparative Effectiveness Research to Guide Optimal Management for Children with Early Hearing Loss
Hearing loss is the commonest congenital anomaly, affecting at least 1-2 per thousand newborns. If children with milder losses, and those with losses in only one ear are included, the number almost doubles. These newborns are at risk of poor speech and language development. Newborn hearing screening has enabled early detection of hearing loss, so that intervention can begin early. Evidence suggests that early identification and intervention (before the age of 6 months) is associated with better language development, and, overwhelmingly, parents and professionals prefer early diagnosis. Given the high lifetime costs of both education and support for individuals that are deaf or hard of hearing, improving outcomes could result in significant cost savings both to health, welfare, and education services. However, many questions remain about the optimal management of children with early hearing loss. Many of these questions could be addressed through comparative effectiveness research. Possible research topics include
- Very early (<4 weeks) hearing aid fitting vs later aiding for congenital hearing loss. Effect on language and speech outcomes.
- Hearing aid vs. no aiding in unilateral hearing loss. Effect on language and speech.
- Unilateral vs. bilateral cochlear implantation for children with bilateral severe-profound hearing loss. Effect on language, speech, quality of life.
- Tele-intervention via web-based system vs. center-based intervention. Effect on language, speech, quality of life, family satisfaction, cost-effectiveness analysis.
- Early (<2 years) vs. later cochlear implantation for severe/profound congenital hearing loss.
Need for Comparative Effectiveness Research focused on Content and Delivery of Early Intervention
There are many questions regarding the best types of intervention for children with early hearing loss, and little evidence in the field on which to base decisions. It is widely believed that this dearth of research must be addressed if outcomes for children that are deaf or hard of hearing are to improve. Suggested areas of focus include.
- The nature of early intervention offered to children that are deaf or hard of hearing.
- the counseling strategies,
- the characteristics of habilitative interventions,
- the fidelity of the intervention,
- the knowledge and skills of the intervention provider
- whether or not the family gets regular progress monitoring information
These may in fact, be stronger predictor variables than the type of amplification or the age at which amplification was acquired, although these are aspects of intervention that are more challenging to measure.
- Studies in this area might include:
- oral approaches vs. sign language
- Intervention supplemented by contact with a deaf mentor vs. no mentoring.
- Intervention aimed at improving aspects of the mother-infant interaction vs. interventions that focus on speech development.
- Aspects of successful intervention approaches that are associated with measured improved outcomes.
- Interventions for children that have hearing loss in addition to other sensory or developmental conditions.
- Interventions for mild and unilateral hearing loss e.g. trials of more intense vs. less intense intervention approaches.
- Delivery of Intervention Services
- These may be home-based, center-based or delivered via tele-intervention.
- Could compare effectiveness of tele-intervention via web-based system vs. center-based intervention. Effect on language, speech, quality of life, family satisfaction, cost-effectiveness analysis.
- This research may also benefit children with other types of speech and language delays, and children that are receiving early intervention for other developmental conditions.
- Outcomes research: Outcomes have not been well measured. Outcomes of interest include:
- Language development(sign and oral)
- Speech development
- Academic achievement including reading ability
- Quality of Life
- Mental Health
- Functioning in adulthood-college attendance, occupation, income, social function, self-esteem
- Patient registry
The US does not have a national registry of deaf/hard of hearing children. The creation of such a register could assist with tracking the progress of the newborn screening program, and determining how effective it is being in early diagnosis and intervention, and in evaluating outcomes. Give the degree of interest within the Deaf and hard of hearing communities on determining the best approaches to management of early hearing loss, including choice of communication modality and nature of intervention, there could be support for a voluntary registry. Such a registry could serve as a resource for research into outcomes across the lifecourse for children that are Deaf or hard of hearing.
The results of these initiatives would also inform development of the broader system of care for children with developmental challenges.
Thank you for considering these comments which were compiled by Dr Shirley Russ MD MPH with input on needed research in the content and delivery of early intervention services from Dr Christie Yoshinaga-Itano PhD.
April 2nd 2009
Shirley Russ MD MPH MRCP FRACP
Associate Clinical Professor of Pediatrics, UCLA
Department of Academic Primary Care Pediatrics, Cedars-Sinai Medical Center.
8700 Beverly Blvd., Rm 1165W
Los Angeles, CA 90048