The Rhode Island Toddler Wellness Overview Survey (TWOS) The Rhode Island Toddler Wellness Overview Survey (TWOS): An Opportunity for Data Linkages Samara Viner-Brown, MS Rhode Island Department of Health 13th Annual Maternal and Child Health Epidemiology Conference December 14, 2007

ACKNOWLEDGEMENTS Hanna Kim, PhD, Epidemiologist Rachel Cain, PRAMS Coordinator Denise Cappelli, TWOS Coordinator

OUTLINE Background Survey Design and Methodology Data Linkage Weighting Methodology Examples Limitations Advantages

Background Rhode Island Population Total: ~1 million Births: ~12,500 per year Integrated Child Health Information System: KIDSNET data from 10 programs serving children RI PRAMS ~ 2,000 (~16% all births) women surveyed annually

Why Conduct a Toddler Survey? Little or no data on the health and well-being of children between birth and adolescence PRAMS provides an opportunity for longitudinal analysis Can study the relationship between outcomes of young children and their mothers’ earlier experiences

PRAMS Follow-Up Planned to conduct toddler survey when applied to become a PRAMS state (2001) Obtained RI Dept of Health IRB approval for the toddler survey in 2001 RI PRAMS survey asks respondents if they can be contacted again in two years

Follow-Up Methodology A reminder letter is sent at the time the child reaches their 1st birthday send any new contact information and reconfirm participation (opportunity to opt out) 45% response rate to “birthday letter” and nearly 100% agree to participate PRAMS respondents are transferred to Access database with selected fields demographics, birth certificate number and PRAMS ID #

Survey Design Designed in partnership with RI PRAMS Steering Committee (Toddler Work Group) Questions gathered from multiple sources: RI PRAMS Oklahoma TOTS Survey PEDS Survey National Indicators Survey Database Ages and Stages Questionnaire Other Health Dept surveys (HIS and BRFSS) Final instrument: 58 questions

Survey Methodology Survey sent to all PRAMS respondents, except those who asked not to be re-contacted Two mailings, no telephone follow-up $5 incentive with first mailing

Associated Costs Development (~$25,000) Ongoing (~$50,000/year) Focus groups Survey design Ongoing (~$50,000/year) Printing Postage Staff Incentives

Survey Topics Health Status/Physical Characteristics (ht/wt) Breastfeeding Oral Health Child Development Behavior/Psychosocial Issues Safety (car seat/tobacco smoke exposure) Insurance Health Care/Specialty Care Child Care Family Planning Maternal Factors (depression, stressors, mobility) Demographics

PRAMS-TWOS Linkage PRAMS and TWOS files linked on PRAMS ID# using SAS—merged file SUDANN used for analysis 2005-2006 TWOS linked with 2003-2004 PRAMS data Total linked population = 1,207

Weighting Methodology Three-Step Process: Sample Weights: same as PRAMS Response Weights: Modified PRAMS Stepwise logistic regression Non-Coverage Weights: same as PRAMS

TWOS Response Rates 2005-2006 Percent (n = 649) (n = 548)

Selected Demographics Among TWOS Respondents Percent <20 20-34 35+ <12 12 >12 Married Single Core Rest Priv Pub None <20 20-34 35+ <12 12 >12 Mar Sing White Blk Hisp Non Core Rest Priv Public AGE EDUCATION MARITAL RACE ETHNICITY RESID INSURANCE STATUS

DATA LINKAGE EXAMPLES

Difficult Pregnancy Experience by Maternal Depression Difficult Pregnancy Experience by Maternal Depression* Among TWOS Respondents p < 0.0001 Percent *Over the past 12 months, have you had two or more weeks in a row when you felt sad, blue or depressed, or lost pleasure in things that you usually cared about or enjoyed?

Difficult Pregnancy Experience by Frequency of Feeling Overwhelmed Difficult Pregnancy Experience by Frequency of Feeling Overwhelmed* Among TWOS Respondents Percent p < 0.05 *Over the past 12 months, how often have you felt overwhelmed by the demands of your child or children?

Examples of Other Analyses Significant relationship between pregnancy experience and mother’s: Diagnosis of depression Concerns about child behavior and development Rating of child’s general health TWOS

Examples of Other Analyses Significant relationship between birth outcome, e.g., birth weight and gestational age (PRAMS/birth certificate) with toddler’s: General health Specialty care EI enrollment Hospitalizations Child developmental & behavioral index Parent’s concerns re: development TWOS

Limitations Loss of potential respondents due to attrition Sensitivity of topics Certain topics only captured with single question Different interpretations of questions by respondents Problems with generalizations (e.g., marital status = no support)

Limitations (continued) Small sample sizes can limit interpretation/ significance Response rate lower than desired, which impacts “n” sizes (certain populations are more difficult to reach) PRAMS-TWOS linkage: Different methodologies Different questions or variations of questions

Advantages of a Toddler Follow-Up Survey (TWOS) Provides an opportunity to better understand the relationship between behaviors and experiences during the perinatal period that can influence the well- being of mother and child later in life Data can be linked to other data sets (e.g., PRAMS, Vital Records, KIDSNET (RI’s integrated child health information system) for longitudinal analyses

Chief, Data and Evaluation Samara Viner-Brown, MS Chief, Data and Evaluation Division of Community, Family Health & Equity Rhode Island Department of Health 401.222.5935 samara.viner-brown@health.ri.gov www.health.ri.gov