Informing Parents About Newborn Screening: Hidden Problems, Practical Solutions

Terry Davis, PhD Department of Pediatrics & Medicine Louisiana State University Health Sciences Center-Shreveport May 5, 2004

NBS Communication Stages Initial Screening Retest Confirmed Positive

Parent informational & psychological needs vary

NBS Parent Education Background ü NBS parent education materials available in 49 of 51

states ü Written consent required in Wyoming and Maryland ü AAP -NBS Task Force recommends families be

educated during the prenatal/ perinatal periods ü Prenatal NBS/ UNHS education is rare ü NBS pamphlets often focused on program vs. parent

NBS Communication Challenges ü New technology/rapidly changing environment ü Parents/ public lack basic knowledge ü Hospital birth visit a “fog” for most parents ü Primary providers may lack up-to-date

information, patient education materials, time ü NBS information not a priority for parents or

providers until retesting is needed ü Best practices yet to be identified

Hidden Barriers to Informing Parents about NBS Patients/ providers/nurses/ state programs: ü Agendas/ communication styles/ knowledge level differ Patients: ü Education/ Literacy/ Language ü Health Literacy:

Capacity to • Obtain, process, understand basic health information and services • Make appropriate health care decisions (act on information) • Access/ navigate healthcare system

Health communication Hot national topic IOM: 2004 Report ü 90 million adults have trouble understanding and acting on health information ü Complex text must be simplified and attention paid to culture and language ü Quality standards are needed for patient education Healthy People 2010 ü Improve health communication/health literacy JCAHO (1993); Balanced Budget Act (1997) ü Patients must be given info they can understand

National Adult Literacy Survey n = 26,000

• Most accurate portrait of literacy in U.S. • Scored on 5 levels • Levels 1 and 2 cannot: o

Use a bus schedule or bar graph

o

Explain the difference in two types of employee benefits

o

Write a simple letter explaining an error on a bill

1993 National Adult Literacy Survey 17% 32% Level 3

Level 4

Level 1 Level 2

High School grads

27%

Level 5 - 3%

21% Atlanta Baltimore Boston Chicago Los Angeles

38% 38% 28% 37% 37%

Video • Healthcare is increasingly a written culture. • It’s hard to be a patient • It’s easy to make a mistake

Mismatched Communication

Provider Process/ State NBS Program: Giving information Patient Process: Understanding, remembering, and acting on information

Simplifying Written Materials: Will it make a difference?

% Correct

Immunization Knowledge Score By Polio Pamphlet Read CDC

100 90 80 70 60 50 40 30 20 10 0

LSU

** *

1st to 3rd

4th to 6th

7th to 8th

9th +

Reading Ability Davis, TC, Fredrickson DD, et al. 1988

*p