Transcript Evaluating Families Satisfaction with EHDI in Massachusetts Jessica MacNeil, MPH

Evaluating Families Satisfaction
with EHDI in Massachusetts
Jessica MacNeil, MPH
Massachusetts Department of Public Health
Boston, MA
Faculty Disclosure Information
In the past 12 months, I have not had a significant financial
interest or other relationship with the manufacturer(s) of the
product(s) or provider(s) of the service(s) that will be
discussed in my presentation.
This presentation will (not) include discussion of
pharmaceuticals or devices that have not been approved by
the FDA or if you will be discussing unapproved or “offlabel” uses of pharmaceuticals or devices.
Snapshot of Massachusetts
80,000 births annually
 220 children diagnosed with hearing
loss annually
 52 birth facilities
 26 DPH-approved audiological
diagnostic centers (ADCs)
 62 Early Intervention (EI) programs

Massachusetts Statistics*
99% screening rate
 1% refer rate
 89% receive diagnostic evaluation**
 75% receive EI services

*Data are based on 2003-2004 birth cohort.
**Data are based on reports from DPH-approved ADCs only.
Background
Benefits of early identification of
hearing loss in the areas of speech,
language, and cognitive outcomes well
documented
 Little research on the effects of the
EHDI process on families
 Develop a tool for states to evaluate the
quality of EHDI services for families

Objectives
To determine the levels of families’
satisfaction and anxiety associated
with the EHDI process
 To determine what factors affect
families satisfaction levels with the
EHDI process
 To assess whether or not a child’s
hearing status affects the levels of
satisfaction

Partners

Partners:
– Colorado (CO) Infant Hearing Program
– Centers for Disease Control and
Prevention (CDC) EHDI Program

Collaboration:
– Protocol and survey development
– IRB waiver process
– Pilot survey project
Products Developed
Invitation letters
 Surveys
 Translations of surveys and
invitation letters into Spanish
 Microsoft Access databases
 SAS programs

Survey Design

Pool of questions from other studies
developed by the Family Issues
Committee
 MA and CO, with technical assistance
from CDC, selected and modified
questions to address project objectives
 Surveys were coded to allow linkage with
state EHDI systems
 Parents were directly involved in survey
development
Study Groups
Group 1: Families whose newborn
passed their initial hearing screening
Group 2: Families whose infants refer on
their initial screening but subsequently
pass on outpatient re-screen or
diagnostic evaluation
Group 3: Families whose infants are
identified with permanent hearing loss
Sampling Period

Group 1:
– January 1, 2004- July 1, 2004 births

Group 2:
– January 1, 2004- July 1, 2004 births

Group 3:
– January 1, 2002 - April 30, 2004 births
Response Rate / Sample Size

Group 1:
– 1,200 sent (56 Spanish)
– 328 returned (2 Spanish), 27.3% (Final sample size: 748)
 Group 2:
– 2,545 sent (123 Spanish)
– 643 returned (12 Spanish), 25.3% (Final sample size: 223)
 Group 3:
– 393 sent (24 Spanish)
– 135 returned (4 Spanish), 34.4% (Final sample size: 135)
 Total:
– 4,138 sent (203 Spanish)
– 1,106 returned (18 Spanish), 26.7%
Satisfaction with Screening
Services
100
80
Not Satisfied At All
60
Not Very Satisfied
Somewhat Satisfied
40
Satisfied
20
Very Satisfied
0
Group 1
Group 2
Group 3
How did you feel when you first learned
that your baby would have his or her
hearing screened?
100
80
60
40
20
0
Not
Anxious
Somewhat
Anxious
Group 1
Anxious
Group 2
Group 3
Very
Anxious
When you learned the results of your baby’s
hearing screening, how did you feel?
100
80
60
40
20
0
Not
Anxious
Somewhat
Anxious
Group 1
Anxious
Group 2
Group 3
Very
Anxious
What you were told to do
next was…..
Group 2: 83% reported that it was
clear what they should do next after
the screening
 Group 3: 90% reported that it was
clear what they should do next after
the screening

Satisfaction with Re-testing
Services
100
80
Not Satisfied At All
60
Not Very Satisfied
Somewhat Satisfied
40
Satisfied
20
Very Satisfied
0
Group 2
Group 3
How did you feel when you first learned
that your baby would have his or her
hearing re-tested?
100
80
60
40
20
0
Not
Anxious
Somewhat
Anxious
Group 2
Anxious
Group 3
Very
Anxious
When you learned the results of your baby’s
outpatient hearing re-testing, how did you
feel?
100
80
60
40
20
0
Not
Anxious
Somewhat
Anxious
Group 2
Anxious
Group 3
Very
Anxious
Time until first re-testing
appointment
Group 2 Group 3
(%)
(%)
Less than one week
24
10
1 to 2 weeks
33
26
2 weeks to 1 month
30
30
1 to 2 months
10
26
More than 2 months
3
8
Number of outpatient
re-testing appointments
One Time
Group 2 Group 3
(%)
(%)
88
35
Two Times
9
28
Three Times
1
15
More Than
Three Times
2
22
Satisfaction with Audiologist
100
80
Not Satisfied At All
60
Not Very Satisfied
40
Somewhat Satisfied
20
Satisfied
0
Audiologist's
experience
working with
infants and
young children
Care and
services your
audiologist is
providing
Very Satisfied
Was the information you were given
about intervention/communication
options equally presented?
60% The information was unbiased
 19% The information was somewhat
unbiased
 16% The information was somewhat
biased
 5% The information was very biased

Looking back at the activities involved in
finding out that your child had a hearing
loss, did the benefits outweigh the
negatives?
Many more benefits
than negatives
Few more benefits
than negatives
Few more negatives
than benefits
Many more
negatives than
benefits
Early Intervention Enrollment
81% Receiving EI services
 19% Not receiving EI services

Satisfaction with EI
100
Not Satisfied At All
80
Not Very Satisfied
60
Somewhat Satisfied
40
Satisfied
20
Very Satified
0
EI's knowledge of EI services overall
hearing loss and
deafness
Family Members with Childhood
Hearing Loss
Group 1: 10%
 Group 2: 15%
 Group 3: 28%

Health Problems and Special Needs
Group 1: 15%
 Group 2: 18%
 Group 3: 28%

Were you informed that hearing loss
can develop at any time and that
concerns should be discussed with
your doctor?

Group 1:
– Yes: 39%
– No: 61%

Group 2:
– Yes: 51%
– No: 49%
Parent Concerns

Parents should be present for the screening.
 We live in a rural area and have to wait long
periods of time to see audiologists and the ENT.
 We were given very mixed messages at the
hospital at the time of screening. There needs to
be improved training on how to talk with parents.
 There needs to be more advocacy for insurance
companies to cover at least some of the expenses
for hearing aids.
Positive Feedback

Thank you for having the newborn hearing
test. My son’s result led to re-testing and
enrolling in EI. Your process is working great.
 I am grateful for the screening program. My
son only has hearing loss in one ear so if he
was never screened we would not know he
has a hearing loss and would have missed
out on EI.
 We wish all states approved this law. All
babies deserve this early start.
If you had another baby, would you
want him or her to have his or her
hearing screened?
Group 1 = 99%
 Group 2 = 99%
 Group 3 = 98%

Additional Survey Topics
Parental knowledge and
understanding of the EHDI process
 Timing and delivery of services and
results
 Barriers to service
 Timing and receipt of information
 Additional questions on satisfaction
and parental attitudes toward
screening

Limitations
Selection bias
 Recall bias
 Qualitative data
 Small sample size (Group 2 and 3)

Lessons Learned
To improve response rates surveys
should be sent soon after birth
 Build in as program evaluation activity
to avoid administrative delays
 Additional efforts needed to increase
participation among diverse groups-only 9% of Spanish surveys returned

Conclusions
Overall, families are satisfied with the
EHDI services they receive in
Massachusetts
 Parents support universal newborn
hearing screening
 Most children with hearing loss are
receiving EI services

Next Steps
Developing final report and
manuscript for peer-reviewed
publication
 Distributing surveys to other states
 Utilizing survey feedback to improve
our program and families experience
with EHDI in Massachusetts

Acknowledgments

Janet Farrell, UNHSP Director
 Chia-Ling Liu, Research and Evaluation Specialist
 Sarah Stone, UNHSP Coordinator
 Martha deHahn, Parent Outreach Specialist
 Nancy Wilber, Principal Investigator
 Roger Wong, Data Entry
 Amarilys Triana, Outreach Specialist
 Colorado Infant Hearing Program
 Centers for Disease Control and Prevention (CDC)
EHDI Program
Massachusetts Universal
Newborn Hearing Screening
Program
http://www.mass.gov/dph/fch/unhsp/index.htm
[email protected]
617-624-5959