Preconception Counseling Starts at Puberty for Child-Bearing Women: An Essential Tool in Diabetes Care

While risks related to pregnancy for women with diabetes are well-known, a persistent need remains for evidence-based clinical approaches that take into account the specific needs of childbearing aged women. National organizations, like the American Diabetes Association (ADA),¹ have responded by supporting research in this area and now recommend starting preconception counseling at puberty and repeating it often to help women plan their pregnancies when it’s safe and wanted as a standard of care.

Investigators at the University of Pittsburgh School of Nursing, Denise Charron-Prochownik, PhD, RN, CPNP and Andrea Fischl, PhD, CRNP, along with nationwide collaborators, have been pioneers and leaders in this field. With research supported by the ADA and National Institutes of Health, the goals of their research studies are to develop, examine, and implement developmentally appropriate and culturally relevant preconception counseling programs, and find, through research initiatives, the best ways to help support and guide a successful future pregnancy for women and their families.

Preconception counseling (PC) has been shown to reduce the risk of pregnancy related complications in women with diabetes by preventing unplanned pregnancies and planning healthy pregnancies. Early in their efforts, the research team, led by Denise Charron-Prochownik, PhD, RN, CPNP, surveyed teens with diabetes. They were concerned when they learned that teens were unaware of PC and reproductive complications, had sexual intercourse before the age of 16 years, had some unsafe sexual practices, and were at high risk for an unplanned pregnancy.^2–4 In their studies, it was found that the first sexual experience of participants was 15 years⁶ and 40% had at least one occurrence of unprotected sex.^2–4 They found that young adolescents, starting at puberty (~13 years old), needed developmentally appropriate and culturally relevant information with a sensitive, proactive, and preventative approach before becoming sexually active to empower them to make informed choices regarding reproductive health.

In response, the research team developed READY-Girls (Reproductive-health Education and Awareness of Diabetes in Youth for Girls)^4–6, a developmentally appropriate, theory-based,⁷ and cost-effective PC program for teens with either Type 1 or Type 2 diabetes, and culturally modified it to specifically meet the needs of African American and Latina adolescent women. READY-Girls is designed to engender “awareness” that includes information on several topics including the importance of tight control before conception, diabetes and pregnancy/risk of complications, importance of planning a pregnancy with PC, how to prevent an unplanned pregnancy, and family planning advice.^4-6 The READY-Girls preconception counseling program is endorsed and distributed by the ADA to raise awareness and prevent unplanned pregnancies and pregnancy complications.

Research on READY-Girls has demonstrated the feasibility and efficacy of a PC intervention for teens,^4,8,9 the benefit of “booster” interventions,³ and the feasibility and benefits of a mother-daughter intervention^10,11 and communication.¹¹ READY-Girls has been shown to be a useful resource for health care providers (HCPs) in providing prevention-focused pregnancy counseling to parents of adolescents with diabetes¹² with an economic benefit (costs $18 per participant).² Long-term (15 year follow up) results showed that initiating PC during adolescence was associated with the use of more effective family planning and postponing a participant’s first sexual experience.^3,8 These studies served as the evidence-based platform to support the statement, “Starting at puberty, PC should be incorporated into routine diabetes care for all girls of child bearing potential.”¹ For example, PC and reproductive health is one of four modules provided to adolescents with diabetes in the Diabetes Transition Program at UPMC Children’s Hospital of Pittsburgh. The modules serve as the stimulus for group discussions led by HCPs who focus on issues relevant to teenagers within the context of diabetes, leading to group decision-making and peer support. READY-Girls is presented to female adolescents with diabetes and READY-Guys¹³ is offered to male adolescents with diabetes who participate in the Diabetes Transition Program. The team’s next goal was to develop a PC program for adolescent females at risk for diabetes.^1,3 The READY-Girls book⁵ is available free to families and providers on the ADA website (www.diabetes.org/ReadyGirls) for adolescents and health care providers.

Building on their PC work with adolescents and parents, the research team expanded their program to address the needs of adolescent women at risk for gestational diabetes mellitus (GDM). GDM is among the most common medical complications of pregnancy, affecting 7-18% of all pregnancies in the U.S.¹⁴ with rates that have doubled in the last two decades, paralleling the obesity epidemic.¹⁵ GDM and obesity can increase maternal and fetal morbidity and mortality^16,17 and are associated with severe complications for both the mother and baby. In addition, GDM is a significant risk factor for both mother and baby developing type 2 diabetes (T2D).¹⁵ GDM and obesity complications during pregnancy include maternal high blood pressure, preeclampsia,¹⁸ fetal macrosomia, birth trauma, hypoglycemia, hyperbilirubinemia, and hypocalcemia.^15,19 Increasing the risk of obesity and T2D in the offspring creates a vicious cycle.²⁰

Women are more likely to develop GDM if they are Indigenous,^21,22 have high pre-pregnancy weight, weight gain in young adulthood, a history of GDM or hypertension,¹⁹ a family history of diabetes, or a sedentary lifestyle.²³ Compared to Caucasians, American Indian (AI), Alaska Native (AI/AN)²⁴, and Native Hawaiian (NH) youth^25,26 have more risk factors for GDM and higher rates of GDM and pregnancy-related complications, including higher preterm delivery²² and neonatal mortality rates.^25,26 Indigenous females have twice the risk of GDM than non-Hispanic White females and 52-74% of women with GDM develop T2D.²⁷ The prevention of GDM is imperative for breaking the generational cycle of T2D in Native populations. The widely referred to Diabetes Prevention Program (DPP), translated for AI/AN adults²⁸ with prediabetes from diverse AI/AN community settings, showed that a lifestyle intervention can prevent or delay the onset of diabetes for those at risk.²⁹ Additionally, the most effective intervention, the lifestyle program, was also effective in reducing progression to diabetes among women with a history of GDM who participated in the DPP study.³⁰ However, neither the DPP nor post-partum GDM T2D risk reduction interventions³¹ have been developed to specifically target the primary prevention of GDM or focus on high risk adolescents.³² 

To reduce GDM in youth in Indigenous populations, Stopping GDM, a PC program built upon READY-Girls, was created.^4,6,33 The adapted Stopping GDM program focuses on GDM-at-risk AI adolescent females and their mothers. Stopping GDM combines the DPP healthy lifestyle elements with PC to reduce the risk of GDM prior to the first pregnancy and to reduce the risk of T2D in both the AI adolescent and her future offspring. The aim is to break the intergenerational cycle of diabetes in Indigenous communities starting at puberty, and prior to conception, by raising awareness of adolescent females’ risks and GDM risk-reduction strategies using culturally grounded, community inclusive, and strengths-based holistic health messages to promote healthy family planning.

To culturally inform Stopping GDM development, a robust qualitative needs assessment with key stakeholders was performed that revealed that AI women with a history of GDM lamented a lack of resources tailored for AIs, stories from AI women who had GDM, a focus on instilling traditional values with family and community involvement, and culturally empowering messages for AI girls.^32,34,35 Stopping GDM is an online PC/education program that relies on healthy lifestyle behaviors to reduce risk for GDM in at-risk AI adolescents with support from a female adult family member prior to pregnancy. Stopping GDM includes an online eBook,³⁶ video,³⁷ mother-daughter communication booklet, and an online resource toolkit. The online eBook includes two parts, “GDM and GDM Prevention” and “Taking Care of Your Body: Balancing Mind, Body, and Spirit”. The video, produced by a female AI-owned production company, is ~45 minutes in length and narrated by a female AI physician with real stories from AI women. Stopping GDM is available online at no charge.³⁸ An online delivery method was implemented to reach a wider AI audience during the project dissemination phase and ensure widespread free access after the study was completed. Supported by the literature, online learning has been shown to be a feasible method of providing health education and information to Indigenous audiences.^39–43

With additional NIH funding, a series of focus groups were conducted with AI/AN tribal leaders, HCPs who care for AI/AN women and teens, AI mothers, AI women with T2D and/or a history of GDM, and AI teen girls to adapt READY-Girls for use in AI communities. Focus group findings found that AI women did not know about GDM or GDM risk reduction principles before they were diagnosed, or that they were at higher risk of developing GDM.³⁴ In a pre-post pilot study, results showed Stopping GDM enhanced knowledge, health beliefs, and the intention to engage in behaviors to reduce the risk of GDM.⁴⁴ In addition, the study team compiled data from a 5-site randomized control trial (RCT) with AI daughters (12-24 years old) and mothers (or other adult female caregiver) (N=149 dyads). Stopping GDM findings are currently being analyzed in the RCT to determine the early effects of engagement on GDM and reproductive health knowledge, health beliefs, self-efficacy, and GDM risk reduction behaviors, such as healthy eating and physical activity, reproductive health choices, family planning, and mother daughter communication. This RCT had also tested Stopping GDM’s effect on adolescent-initiated discussions with HCPs.

The research team’s future plans include exploring ways to address the needs of childbearing women with a focus on those women at highest risk. AI/AN/NH are federally recognized as the three major Indigenous populations of the U.S. While culturally distinct and geographically-based, these three diverse populations are all at increased risk for GDM and this known risk is so high that many in Indigenous communities believe that the development of diabetes is “all but inevitable.”^34,45–47 Since Stopping GDM was uniquely tailored to AI teens, the research team plans to expand their program to all adolescents in U.S. Indigenous populations at high risk for GDM. The model will be expanded to include Ancestral Knowledge Systems (AKS)^48,49, which is traditional ecological knowledge for Indigenous people. A movement toward holistic health or holistic wellness will include a focus on a healthy lifestyle and reproductive health, such as planning future pregnancies with a healthier body weight to decrease risk for GDM. Technological approaches that are evidence-based, relevant, and regularly utilized by Indigenous communities will be implemented.^50–54 The goal is to improve Indigenous health by empowering Indigenous adolescents and their families, building the resilience of Indigenous peoples, and decreasing maternal/fetal morbidity and mortality by lowering the risk of GDM.²⁰

Most importantly, the investigators will continue to use a strong community engagement approach to obtain perspectives from AI/AN/NH adolescent females at risk for GDM and members of their support network, HCPs, and Indigenous community members who are local ‘keepers’ of traditional knowledge. The program will rely on innovative, easy to scale methods, e.g., a mHealth platform, making it relevant for a larger number of Indigenous females across the U.S.⁵⁵ The research team brings a strong background in diabetes research, along with engagement in Indigenous communities. Over 60% of the research team are AI/AN/NH and cumulatively bring decades of academic-Indigenous community partnership experience achieved through strong and thoughtful collaborations with target communities and community leaders.

Preconception counseling needs to be considered as a critical component of routine care for childbearing women with diabetes. While it is important that conversations start early at puberty and prior to sexual activity, all women with diabetes (and those at risk of diabetes) need to be made aware of preconception counseling and its importance. Preconception counseling should be raised at every clinic visit. Women with diabetes need to know that it’s more than preventing an unplanned pregnancy, it’s also knowing how to plan a pregnancy when it’s safe and wanted. It takes knowledge, positive health beliefs, and social support to change health behavior. While counseling must be individually tailored, resources should be available that are culturally adapted for specific populations. Preconception counseling and support leads to empowerment.

Funding Sources

ADA Clinical Research Awards (x3)

R01 HD044097 (NIH/NICHD)

R01 NR014831 (NIH/NINR)

NIH-UL1TR001857 (CRISP- CTSI)

Eli Lilly, Inc

FONDECYT

References

Please refer to the Update in Endocrinology Fall 2021 CME course on UPMCPhysicianResources.com for a full list of references featured in this article.