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 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 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. AWARENESS PRECONCEPTION COUNSELING Survey of 16 - 21 yr old females w/ T1D: What do you know about preconception counseling (PC)? Nothing 75% Misconceptions 3% AWARENESS PRECONCEPTION COUNSELING Survey of 13 - 21 yr old females w/ T2D: What do you know about preconception counseling (PC)? Nothing 100% 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). “READY-Girls” is Reproductive-health Education and Awareness of Diabetes in Youth for Girls READY-Girls is 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) 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) APPLICATION OF THE EXPANDED HEALTH BELIEF MODEL (STRECHER & ROSENSTOCK, 1997) Individual Perceptions Mediating/Modifying Factors Likelihood of Action Reproductive Health Behaviors Knowledge Psychosocial Variables Intervention Perceived susceptibility/severity of reproductive problems (e.g. Unplanned pregnancy, complications Demographic Variables Adherence Perceived threat of reproductive problems Motivational Cues Ability to make decisions Sexually Active Awareness of PC Risk Profile/Personal Health *Variables not amendable to change from intervention. Attitudes/Beliefs are italicized. Perceived benefits minus perceived barriers to behavior change for promoting reproductive health Self-Efficacy to perform reproductive health behaviors Intention (likelihood) to change behavior for promoting reproductive health Figure 1 Preventing an unplanned pregnancy Seeking preconception counseling Ability to initiate discussion Metabolic Control 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) 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 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 The READY-Girls Message: Impact of a Newly Developed CDROM 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 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 Comparison of Intervention vs Control Outcomes Diff (Post - Pre) 2 Normative Beliefs I>C .114 Intention I>C .062 Severity I>C .136 Benefits I>C .095 Social Support I>C .197 D&P Knowledge I>C .291 D&C Knowledge I>C .068 Overall Knowledge I>C .254 2 near .0588, .2000, denote medium and large effects in behavioral sciences 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 Reproductive Health Education for Adolescent Girls with Diabetes (READY-Girls): Sustaining Long-range (9 month) Outcomes Denise 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, PA Funded by American Diabetes Association 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 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 website 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 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 BASELINE DEMOGRAPHICS* • • • • • • • • • • Mean Age (yrs.) 16.7 Mean Duration of Illness (yrs.) 7.2 African American 5 Living with Parents 85 Mothers completing College 42 Teens currently in High School 54 Current Boyfriend (all single) 34 Ever Sexually Active 24 Age first sexual intercourse (yrs.) 15.6 Had an episode unprotected sex 12/24 *No statistically significant differences between treatment groups. (13.2-19.7) (1-17) (6 %) (96%) (49%) (64%) (38%) (21%) (13-19) (50%) RESULTS Results KNOWLEDGE • - IG teens increased post-CD (p<.001) in knowledge of PC. - IG teens sustained knowledge over 9months (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) 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 Innovative Measure of Knowledge Associated with Attitudes regarding Reproductive Health in Teens with Diabetes Denise Charron-Prochownik, PhD, CPNP, FAAN Sereika, 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 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 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) 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. Comprehensive Diabetes Specific RH Knowledge Measure 7 subscales 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. Comparison of Reproductive Health Knowledge Change Scores Within and Between Treatment Groups Knowledge Mean (SD) IG Pre CG p Post Pre p Post Between Groups p Preconception Counseling 67.9 (10.6) 77.4 (11.8) <.01 67.0 (14.4) 65.0 (15.4) .44 <.01 Pregnancy 63.4 (11.5) 76.8 (13.2) <.01 65.5 (15.1) 63.3 (15.0) .33 <.01 Contraception 82.9 (26.6) 85.0 (21.6) .70 76.7 (29.6) 72.4 (28.7) .36 .38 Sexuality 68.3 (29.4) 90.6 (21.0) <.01 73.9 (26.2) 73.0 (30.9) .86 <.01 Puberty 67.5 (43.2) 82.5 (29.0) .05 58.6 (43.1) 65.5 (42.1) .37 .47 General Family Planning 83.1 (16.4) 91.3 (16.6) .01 81.5 (21.2) 82.8 (20.0) .68 .14 General Diabetes 50.0 (15.7) 57.5 (17.1) .02 45.5 (18.7) 46.6 (19.2) .67 .10 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) 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) 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 wellinformed 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. 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. Prior to sexual activity, during routine clinic visits, health care professionals should introduce all women with diabetes to the “Awareness” Phase of Preconception Counseling 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. Programs like: “READY-Girls” an effective, inexpensive, DVD educational, selfadministered Preconception Counseling program for teens with diabetes can be placed online for greater dissemination. These programs could decrease health costs in the future. 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. Acknowledgements • Carnegie Mellon University – – – – – – • Wayne State University – – – – • Julie Downs Baruch Fischhoff Mandy Holbrook Mark Huneke Kerry Reynolds Wandi Bruine de Bruin Rebecca Hunnicutt Margaret M. Maly Kathleen Moltz Angela Purleski University of Pittsburgh – – – – – – – – – – Patricia Schmitt Susan Sereika Margaret Hannan Andrea Rodgers Fischl Dorothy Becker Sarah Ecklund Shiaw-Ling Wang Jessica Devido Monica DiNardo CIDDE Other collaborators - Neil White Joan Mansfield Bill Herman Nancy Janz Nicole Johnson dbaza, inc. Production Co. - All the Research Nurses - All the teens who participated Acknowledgements Other team members: - Beth Cohen - Peter Draus - Linda Freytag - Danielle Lockhart - Cindy McQuaide - Brenda Michel - Kerry Milaszewski - Jamie Reddinger Funded by American Diabetes Association and National Institute of Health - NICHD