An Interactive On-line Preconception Counseling Program for Teens with Diabetes: READY-Girls

1. An Interactive On-line Preconception Counseling Program for Teens with Diabetes: READY-Girls Denise Charron-Prochownik, PhD, CPNP, FAAN School of Nursing University of Pittsburgh Funded by ADA Clinical Research Awards National Institute of Health-NICHD

2. Background • Diabetes can cause reproductive complications • Up to 9% of diabetic women with unplanned pregnancies have complications (e.g., infants with congenital abnormalities). • Up to 2/3 of diabetic women have unplanned pregnancies. • Reproductive complications can be reduced from 9% to 2%through Preconception Counseling (PC) • ADA recommends PC for all women of child-bearing potential to prevent unplanned pregnancies

3. Background Adolescent girls are unaware of PC and reproductive complications, early and some unsafe practices, and are at high risk for an unplanned pregnancy. • 39% of teenage girls with diabetes had an episode of unprotected sex. • Teens average age of sexual debut was 15.6 years.

4. AWARENESS PRECONCEPTION COUNSELING Survey of 16 - 21 yr old females w/ T1D: What do you know about preconception counseling (PC)? • Nothing 75% • Misconceptions 3%

5. AWARENESS PRECONCEPTION COUNSELING Survey of 13 - 21 yr old females w/ T2D: What do you know about preconception counseling (PC)? • Nothing 100%

6. Purpose The purpose of this presentation is to describe the development, promotion and evaluation of an interactive PC educational program (book and CD-ROM) for girls with diabetes, called Reproductive-health Education and Awareness of Diabetes in Youth for Girls (READY-Girls).

7. “READY-Girls” is Reproductive-health Education and Awareness of Diabetes in Youth for Girls READY-Girlsis a theory- and evidence-based Preconception Counseling program developed as a DVD and book that targets teens with diabetes Expanded Health Belief Model (STRECHER & ROSENSTOCK, 1997) STAR decision model (MEICHENBAUM, 1983)

8. Theoretical/ Decision-making Models for READY-Girls EXPANDED HEALTH BELIEF MODEL (STRECHER & ROSENSTOCK, 1997) STAR model S = Stop T = Think about your choices A = Act on your decision R = Reflect on results of your choice (MEICHENBAUM, 1983)

9. APPLICATION OF THE EXPANDED HEALTH BELIEF MODEL (STRECHER & ROSENSTOCK, 1997) Individual Perceptions Mediating/Modifying Factors Likelihood of Action • Reproductive Health Behaviors • Preventing an unplanned pregnancy • Seeking preconception counseling • Ability to initiate discussion Knowledge Psychosocial Variables Demographic Variables Adherence Perceived benefitsminus perceived barriers to behavior change for promoting reproductive health • Perceived • susceptibility/severity • of reproductive • problems • (e.g. Unplanned • pregnancy, • complications Intervention Perceived threat of reproductive problems Self-Efficacy to perform reproductive health behaviors Motivational Cues Ability to make decisions Sexually Active Awareness of PCRisk Profile/Personal Health Intention (likelihood) to change behavior for promoting reproductive health Metabolic Control *Variables not amendable to change from intervention. Attitudes/Beliefs are italicized. Figure 1

10. Significant Association of PC Awareness with Seeking PC Survey 16-21 yr. old: Motivational Cue: Initial awareness of PC r = .27 (p < .05) (Charron-Prochownik, 01) Survey pregnant women with diabetes: Motivational Cue: HCP encouraged PC OR = 3.13 (p = .02)(Janz, 95)

11. 3 Phases of Preconception Care (PC) • Phase 1: “Awareness Counseling” (anyone, anytime “not ready”) • Phase 2: “Overview” PC (> 6 months “getting ready”) • Phase 3: “In-Depth” PC (< 6 months “being ready”) (Jones, 1995) * READY-Girls is Phase 1

12. What Is Given In “Awareness Counseling” • Information about: • Diabetes and pregnancy / risk of complications • Importance of tight control before conception • Importance of planning a pregnancy with PC • How to prevent an unplanned pregnancy • Family planning advice

13. The READY-Girls Message:

14. Impact of a Newly Developed CD-ROM Reproductive Health Education Program on Teen Women with DM:3-month Follow-up Denise Charron-Prochownik, PhD, RN, CPNP Dorothy Becker, Susan Sereika, Meg Ferons, and Jamie Reddinger University of Pittsburgh Funded by an American Diabetes Association Clinical Research Award

15. Sample • 53 adolescent women with T1D, 1 session and 3 groups: CD, BK, SC • Ages 16 to <20 years • No other chronic illness or mental retardation • Not pregnant • Have had type 1 diabetes for at least one year • Recruited from one large Diabetes Center: Children’s Hospital of Pittsburgh

16. Comparison of Intervention vs ControlOutcomes Diff (Post - Pre) 2

18. Results • Compared to CG, IG had significantly increased in knowledge, perceived attitudes and social support • Knowledge, benefits, & barriers were sustained over the 3-month period, but other variables were not

19. Reproductive Health Education for Adolescent Girls with Diabetes (READY-Girls): SustainingLong-range (9 month) OutcomesDenise Charron-Prochownik, Susan M. Sereika, Margaret Ferons Hannan, Andrea Rodgers-Fischl, Dorothy Becker, Joan Mansfield, Peter Draus, William Herman, Linda Freytag, Kerry Milaszewski, University of Pittsburgh, Pittsburgh, PAFunded by American Diabetes Association

20. Methods • Two-group (IG vs standard care control CG), randomized, controlled, repeated measures design • Intervention: Two CD-ROM sessions and one book session of the education program before 3 consecutive routine Diabetes Clinic visits; randomized to web-based message board (for teens and RN); and an RN counseling session • Self-Administered questionnaires (4 Time Points: base, immediate-post CD #1 and CD #2, 9-mo f/u ) • Subjects received $80 for participation

21. Measures / Analyses • Outcome measurements: knowledge, attitudes (EHBM), decision-making and behavior regarding DM and pregnancy, sexuality, birth control (BC), and PC; A1C blood test; and use of the web-site message board • To compare between and within group differences, 2 time points were selected: baseline and 9-mo follow-up • Descriptive • Mixed Model Repeated Measures Analysis

22. Sample • 88 adolescent women with T1D • Intervention group (n=43) • Standard care control group (n=45) • Ages 13 to <20 years • No other chronic illness or mental retardation • Not pregnant • Have had type 1 diabetes for at least one year • Recruited from 2 large Diabetes Center: Children’s Hospital of Pittsburgh and Joslin Clinic Boston

23. BASELINE DEMOGRAPHICS* • Mean Age (yrs.) 16.7 (13.2-19.7) • Mean Duration of Illness (yrs.) 7.2 (1-17) • African American 5 (6 %) • Living with Parents 85 (96%) • Mothers completing College 42 (49%) • Teens currently in High School 54 (64%) • Current Boyfriend (all single) 34 (38%) • Ever Sexually Active 24 (21%) • Age first sexual intercourse (yrs.) 15.6 (13-19) • Had an episode unprotected sex 12/24 (50%) *No statistically significant differences between treatment groups.

24. RESULTS

25. Results KNOWLEDGE • - IG teens increased post-CD (p<.001) in knowledge of PC. - IG teens sustained knowledge over 9-months (p<.001). BEHAVIOR • IG teens consistently used highly effective birth control methods over time compared to CG teens (98.2% vs 95.6% BC effectiveness)

26. Conclusion Teens with T1D are becoming sexually active at an early age; with a high risk for an unplanned pregnancy. Following the CD-ROM IG teens were more likely to: • Be more knowledgeable about DM and pregnancy, sexuality and PC • Be more consistent in their use of effective birth control • Be more likely to seek additional PC information

27. Innovative Measure of Knowledge Associated with Attitudes regarding Reproductive Health in Teens with Diabetes Denise Charron-Prochownik, PhD, CPNP, FAANSereika, S. , White, N. , Becker, D. , Powell, A. B. , Schmitt, P. , Kennard, K. , Diaz, A. , Jones, J. , Downs, J. University of Pittsburgh Washington University, Carnegie Mellon University Funded by the National Institute of Health-NICHD

28. Sample • 97 adolescent females with T1D and T2D • Ages 13 to <20 years • No other chronic illness or mental retardation • Not pregnant • Had diabetes for at least one year • Recruited from 2 large university Children Hospitals’ Diabetes Clinics

29. Measures Outcome measurements: • Knowledge, beliefs (EHBM), decision-making regarding DM and pregnancy, sexuality and PC; • Intention to & actual initiating PC discussion with Health Care Professional (HCP)

30. Measures Knowledge - 82 multiple choice 2 split-halves : A = pretest B = posttest contextualized within mini-scenarios, with option “I really don’t know”. Other variables - Likert-type scales using the validated RHATD questionnaire.

31. Comprehensive Diabetes Specific RH Knowledge Measure 7subscales confirmed by factor analysis: preconception counseling (14 items); pregnancy (14 items); contraception (2 items); sexuality (4 items); puberty (2 items); general family planning (4 items); general diabetes (4 items). Questions were multiple choice problem-solving vignettes developed by a mental model technique of topics identified by groups of expert health professionals and teens with T1D and T2D. Scores are summed and based on 100% correctness.

32. Comparison of Reproductive Health Knowledge Change Scores Within and Between Treatment Groups IG Pre Post CG Pre Post KnowledgeMean (SD) Between Groups p p p

33. Correlations between Changes in Scores (Post-Pre) in Total Knowledge with Beliefs Change scores for total knowledge were significantly associated with • perceived risk of complications (r=-.49; p<.001) • severity (r=.40; p=.005) • benefit (r=.32; p=.025)

34. Conclusion • The proposed knowledge measure is more comprehensive; demonstrated content and construct validity; and subscales should be used in analyses. • Teens with diabetes lack knowledge regarding diabetes especially with reproductive health. • Findings appear to indicate early beneficial effects of the READY-Girls program on knowledge which was associated with some positive changes in beliefs (risk & benefit)

35. Discussion This suggests that READY-Girls intervention with boosters stimulates interest and discussion; can sustain long-range effects. This early self-instructional program could potentially empower these young women to make well-informed reproductive health choices for themselves and their future children. • Starting at puberty, Health Care Professionals should introduce all diabetic women to the Preliminary Components of PC: • The effects of diabetes on pregnancy. • The risks of complications. • The benefits of preplanning a pregnancy with PC. • Discuss prevention of an unplanned pregnancy.

36. What age do we target? Young adolescents, starting at puberty (~13 yrs. old), need developmentally appropriate information with a sensitive/proactive/preventative approach before becoming sexually active to empower them to make informed choices regarding reproductive health.

38. Prior to sexual activity, during routine clinic visits,health care professionalsshould introduce all women with diabetes to the“Awareness” Phase of Preconception Counseling

48. It was developed in partnership with the ADA and promoted to healthcare providers and consumers with diabetes. The resource utilization cost of the program is $18,a minimal expense considering the potential economic and human costs of an unplanned high-risk pregnancy.

49. Programs like:“READY-Girls” an effective, inexpensive, DVD educational, self-administered Preconception Counseling program for teens with diabetes can be placed online for greater dissemination. These programs could decrease health costs in the future.

50. Social Marketing Raising awareness of PC during early adolescence through a social marketing tool could have far reaching social and public health implications. Starting PC during early adolescence can empower these young women to become educated consumers of health care and alter their reproductive-health behavior to improve their future chances of having healthy pregnancies and healthy babies.