Volume 40, Issue 3 e15014

REVIEW

Open Access

Attendance at pre-pregnancy care clinics for women with type 1 diabetes: A scoping review

Pauline Ferry,

Pauline Ferry

School of Nursing and Midwifery, National University of Ireland, Galway, Ireland

Women and Infants' Services, Letterkenny University Hospital, Donegal, Ireland

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Fidelma P. Dunne,

Fidelma P. Dunne

School of Medicine, National University of Ireland, Galway, Ireland

Department of Diabetes and Endocrinology, Galway University Hospital, Galway, Ireland

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Catherine Meagher,

Catherine Meagher

School of Nursing and Midwifery, National University of Ireland, Galway, Ireland

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Roisin Lennon,

Roisin Lennon

Advanced Nurse Practitioner, Women and Infants' Services, Sligo University Hospital, Galway, Ireland

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Aoife M. Egan,

Aoife M. Egan

Division of Endocrinology, Mayo Clinic, Rochester, Minnesota, USA

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Christine Newman,

Corresponding Author

Christine Newman

[email protected]

School of Medicine, National University of Ireland, Galway, Ireland

Department of Diabetes and Endocrinology, Galway University Hospital, Galway, Ireland

Correspondence

Christine Newman, C/O Diabetes Day Centre, Galway University Hospital, University Road, Galway, Ireland.

Email: [email protected]

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Pauline Ferry,

Pauline Ferry

School of Nursing and Midwifery, National University of Ireland, Galway, Ireland

Women and Infants' Services, Letterkenny University Hospital, Donegal, Ireland

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Fidelma P. Dunne,

Fidelma P. Dunne

School of Medicine, National University of Ireland, Galway, Ireland

Department of Diabetes and Endocrinology, Galway University Hospital, Galway, Ireland

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Catherine Meagher,

Catherine Meagher

School of Nursing and Midwifery, National University of Ireland, Galway, Ireland

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Roisin Lennon,

Roisin Lennon

Advanced Nurse Practitioner, Women and Infants' Services, Sligo University Hospital, Galway, Ireland

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Aoife M. Egan,

Aoife M. Egan

Division of Endocrinology, Mayo Clinic, Rochester, Minnesota, USA

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Christine Newman,

Corresponding Author

Christine Newman

[email protected]

School of Medicine, National University of Ireland, Galway, Ireland

Department of Diabetes and Endocrinology, Galway University Hospital, Galway, Ireland

Correspondence

Christine Newman, C/O Diabetes Day Centre, Galway University Hospital, University Road, Galway, Ireland.

Email: [email protected]

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First published: 21 November 2022

https://doi.org/10.1111/dme.15014

Citations: 1

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Abstract

Introduction

Type 1 diabetes mellitus occurs in one in every 275 pregnancies and can result in increased morbidity and mortality for both mother and baby. Several pregnancy complications can be reduced or prevented by attendance at pre-pregnancy care (PPC). Despite this, less than 40% of pregnant women with pre-gestational diabetes receive formal PPC. The aim of this scoping review is to identify the barriers to PPC attendance among women with type 1 diabetes.

Methods

We conducted a scoping review by searching five databases (Ebsco, Embase, Ovid and PubMed for literature and the ProQuest for any grey/unpublished literature) for studies in English between 2000 and 2022. Studies that evaluated attendance at PPC for women with type 1 diabetes were included.

Results

There are multiple barriers to PPC attendance, and many of these barriers have been unchanged since the 1990s. Identified barriers can be grouped under patient-centered and clinician-centered headings. Patient factors include knowledge and awareness, unplanned pregnancies, negative perceptions of healthcare and communication issues, unclear attendance pathways and logistical issues including time off work and childcare. Clinician factors include physician knowledge, time constraints and lack of comfort discussing pregnancy/contraception.

Conclusion

This review highlights the ongoing problem of poor attendance at PPC and identifies key barriers to be addressed when developing and implementing PPC programs for women with type 1 diabetes.

What's new?

Pre-pregnancy care (PPC) reduces mortality and morbidity for women with diabetes; however, only 32% of pregnant women with pregestational diabetes attended PPC.
Our scoping review identified 31 studies on the topic of PPC attendance.
Several barriers were identified and can be grouped into patient and clinician factors. Patient factors include knowledge and awareness, unplanned pregnancies, negative perceptions of healthcare, unclear attendance pathways and logistical issues including time off work and childcare. Clinician factors include physician knowledge, time constraints, lack of comfort discussing pregnancy/contraception and communication deficits.
These data will inform future work designing PPC programs that are acceptable, relevant, and accessible to all individuals with type 1 diabetes who are planning pregnancy.

1 INTRODUCTION

An estimated 1% of all pregnancies are affected by type 1 diabetes and many women face significant complications during their pregnancies including pre-eclampsia, macrosomia, pre-maturity and stillbirth.^1-3 Outcomes for women with diabetes are frequently worse than those without diabetes and based on this inequality the writers of the 1989 St Vincent's Declaration formulated a 5-year plan to improve maternal and neonatal outcomes for women with diabetes.⁴

The provision of pre-pregnancy care (PPC) is key to preventing many of these life-long consequences, which place a significant financial burden on the health service.⁵

The goal of PPC is to identify and address lifestyle, medical, social and behavioral issues to optimize health and positively impact on the subsequent pregnancy outcome. PPC attempts to ensure that individuals are advised about potential risks and can make an informed decision about becoming pregnant if specific factors are not modifiable.⁶ Furthermore, PPC is cost-effective and reduces many complications of pregnancy.⁷

When delivered in the context of type 1 diabetes, PPC facilitates improved glycaemic control by targeting a haemoglobin A_1C (HbA_1C) below 6.5% (48 mmol/mol), thus providing an optimal environment for the developing fetus. PPC also works alongside other interventions like continuous glucose monitoring and continuous subcutaneous insulin infusions which have been shown to improve the metabolic profile of early pregnancy.⁸

Many studies have reported on the associations between poor glycaemic control in early pregnancy and adverse outcomes for both mother and baby. It is understood that hyperglycemia leads to overproduction of reactive oxygen species and this in turn can cause oxidative stress which affects embryonic development and organogenesis.⁹

There are also many teratogenic drugs used to treat long-term complications of diabetes, which can cause congenital anomalies.¹⁰ PPC aims to improve glycemic control and ensure that all drugs used to control long-term complications are safe in pregnancy. This will ensure an optimal environment for the conception and development of a healthy pregnancy and prevent the devastating feelings of grief and stress experienced by mothers following the diagnosis of a fetal anomaly.^{11, 12}

PPC also provides the opportunity for screening for the unrecognized complications of diabetes. For example, retinopathy may be present in more than 40% of women of child-bearing age.¹³ Many of these complications can progress during pregnancy if not monitored closely and promptly treated. Clinicians should also use this opportunity to discuss lifestyle factors like immunization, smoking and folic acid use.

PPC is recognized as an essential component of the holistic care of a mother with diabetes, the benefits of which can be seen long term for both mother and baby. Although the benefits of PPC have been shown to outweigh the cost of running these clinics, PPC is still very poorly attended and rates of 26%–32% have been reported.^{14, 15}

The aim of this scoping review is to identify studies that have evaluated PPC attendance and non-attendance in women with type 1 diabetes and to identify barriers to attendance. We will present potential solutions to these barriers in our discussion.

2 METHODS

2.1 Literature search

Following best practice for performing scoping reviews, five electronic databases were searched for relevant literature as follows: CINAHL (EBSCOhost), Embase, OVID and PubMed for published literature and ProQuest for grey/unpublished literature.¹⁶ Keywords included in the search were “diabetes”, “type 1”, “preconception”, “prepregnancy”, “attendance” and “non-attendance”. Search words were combined using the Boolean operators “AND” and “OR”. Truncation was used for different word endings.¹⁷

A sample search strategy for the Embase database is demonstrated in Table 1.

TABLE 1. Sample search strategy for the embase database

#1 Diabet* OR type 1 diabet* = 1 493 981

#2 Preconception OR pre-conception = 8164

#3 Prepregnancy OR pre-pregnancy = 58 151

#4 Attendance = 45 858

#5 Nonattendance OR non-attendance = 2483

#6 2 OR 3 = 64 479

#7 4 OR 5 = 46 080

#8 6 AND 7 AND 1 = 97

Research articles, guidelines and reviews were included in the search. Only articles published in English were included.

We excluded studies published before 2000; studies that did not include type 1 diabetes and studies evaluating the benefits of PPC without examining the reasons for non-attendance. We included studies that evaluated clinician or patient perspective of PPC and included studies that evaluated women with T1DM and type 2 diabetes as one group.

Reference lists of pertinent articles were searched manually, and relevant papers were added to the search. One author had written many relevant studies in the search list and was contacted by mail and gave a list of relevant references. These articles were manually searched and those not already discovered were added to the search. All articles were stored on EndNote

The search was conducted from November 2021 until August 2022.

The results of this scoping review were presented in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines.

There is no published protocol available for this scoping review.

2.2 Study selection

One reviewer (PF) completed the search for studies. These articles were saved to Endnote. Duplicates were removed, and all citations were transferred to RAYYAN (a free, web-based screening tool). RAYYAN allows users to indicate whether the article is for inclusion or exclusion and give reasons for this decision.

Titles and abstracts were blindly reviewed by two separate reviewers (RL and PF). Following the initial search, the blind was removed from RAYYAN. Both reviewers could then see decisions made by each other. Any disagreement over article relevance was resolved through discussion.

2.3 Data extraction

Data were extracted on author, date of publication, country, study design, participants, and sampling, aims, outcomes and limitations. These data were then entered into a pre-designed template (see Table 1). We used word mapping to identify common themes or patterns from the relevant studies and grouped them into categories.

3 RESULTS

3.1 Search results

A total of 320 records were identified (Figure 1). Twenty-eight duplicates were removed, and 53 records were excluded before screening due to a lack of access. A total of 231 records were available for screening. On the first round of screening, 70 records were excluded (four were not in English, 35 were not related to type 1 diabetes and 31 were not related to preconception or pre-pregnancy). A further 137 records were excluded as they did not evaluate pre-pregnancy clinic attendance, leaving 31 articles for full-text review.

Details are in the caption following the image — **FIGURE 1**
Open in figure viewer PowerPoint

Search flow diagram.

3.2 Study characteristics

We identified five semi-structured interviews; four cross-sectional studies; nine surveys; three questionnaires; two mixed-method studies; two prospective studies; two retrospective cohort studies; one randomized control trial; one collective case study; one extended case method and one audit.

Eight studies originated from the United Kingdom; five studies were American; five studies were Australian; three were from China; two were from Spain and one from Canada; one Chilean, one French, one Irish, one Italian, one Saudi Arabian and one Maltese study were also identified. Details of all included studies can be found in table 2.

TABLE 2. List of included studies

No	Author	Country	Study design	Participants and sampling	Aim	Outcomes	Limitations
1	Zhou³⁰ 2018	China	Mixed methods	178 women with type 1 diabetes who were pregnant or planning pregnancy	To assess awareness of pre-pregnancy clinic in women with type 1 diabetes of childbearing age	65.6% of women received pre-pregnancy care Awareness has improved but remains insufficient	Poster presentation
2	Zheng²² 2018	China	Cross-sectional study	435 women of childbearing age with type 1 diabetes	To investigate if the awareness of pre-pregnancy clinic in women with type 1 diabetes	Awareness rates were low at 15.6% Access to pre-pregnancy clinics was low Knowledge of issues with diabetes and pregnancy was low with poor education - poor reception with diabetes education	Small area in China
3	Zhu¹⁹ 2012	Western Australia	Prospective study	51 women with type 1 or type 2 diabetes who attended antenatal care over 6 months.	To investigate the level of awareness of availability of PPC -investigate willingness to attend PPC investigate barriers to access	41% of women know that PPC exists 3.5% would attend if they knew it existed 9.8% would not attend if they knew it existed 54.9 did not know if they would attend if they knew it was available 45% of pregnancies are unplanned Most referrals come from GP 49% Consultant enologists 51% Only 18% of those were offered by GP actually attended pre pregnancy clinic Barriers were unplanned pregnancies, time constraints, difficult to access and previous knowledge (knew enough although knowledge was poor)	Small study one hospital short time frame
4	Wang⁴⁷ 2017	Canada	Audit of attendance and patient survey	150 patients with type 1 diabetes	To identify reasons for nonattendance at clinics and reduce this number by characterizing nonattendance patterns	Reasons for nonattendance were work, fear of judgment and forgetting appointments	Only one hospital was included
5	King⁴⁴ 2009	Australia	Collective case study	7 women with type 1 diabetes	To identify women's experience about pregnancy and birth	Women with type 1 diabetes experienced significant hardship during their pregnancy, including a higher incidence of hypoglycaemic episodes, a loss of hypoglycaemic symptom recognition and weight gain. These difficulties were compounded by a scarcity of available information to support the management of their pregnancy and a lack of availability of experienced health professionals.
6	Shaw⁴⁵ 2008	UK	Extended case method	review 1683 records; 177 women with type 1 diabetes given questionnaire; 32 semi-structured interviews with women with diabetes	To gain knowledge about factors that affect women's decision to plan pregnancy	Attendance at clinic is dependent on the strength of relationship between women and healthcare staff and clinics being less medicalized
7	Sereika³⁷ 2017	UK	Quantitative self-reported retrospective and prospective surveys	102 women with type 1 diabetes	To compare pregnancy planning behaviors of women who received information about preparing for pregnancy while they were teenagers 8to those who did not receive this information	PPC starting in adolescence does have beneficial results in effective use of birth control Patients are more likely to plan a pregnancy more likely to seek advice from professionals when planning a pregnancy	Small study in one area
8	Sapiano²⁹ 2012	Malta	Interventional follow-up prospective study	37 women with type 1 diabetes at age 12 to 30 years	To assess the level of knowledge and awareness related to PPC	There is insufficient knowledge in some women about the benefits of attending PPC Attendance rates are poorer among the less educated, those without private insurance, unmarried, smokers and those who were poor attenders at regular clinics Many poor tenders have negative feelings about healthcare providers Many feel they gain independence by not complying with care regimes Doctors should start discussing PPC in primary care from puberty Innovative techniques that were required to improve the knowledge of both physicians and patients Every medical-related visit by a woman with diabetes is a golden opportunity to strengthen patients' knowledge
9	Magdelano⁵² 2018	USA	Survey	97 of 577 surveys were included in women between 18 and 35 years old with type 1 and type 2 diabetes	Estimate the percentage of women who receive PPC from primary caregivers Determine barriers preventing healthcare providers from providing PPC	Only 18.9% of women received any PPC from primary care Providers would like more time during appointments to discuss PPC Providers believe they are providing more PPC than they are	Small amounts of surveys returned
10	Murphy³⁵ 2010	UK	Semi-structured interviews and qualitative research	29 pregnant women with type 1 or type 2 diabetes	To explore views of women who did not attend PPC prior to pregnancy	Women find PPC advice was not relatable Information leaflets were only read after becoming pregnant Women felt resentful over the intrusion The advice regarding contraception was confusing Many were of the belief they could not fall pregnant because of diabetes There was no knowledge of the full extent of complications that could arise with diabetes and pregnancy 90% were where the PPC was available but timing was an issue logistical and financial concerns Many had previous negative relationships with professionals Professionals need communication training	Small sample size small area
11	Khon³⁴ 2018	USA	Survey and pilot of intervention	29 healthcare providers; 50 adolescent girls with type 1 diabetes	Assess attitudes and behaviors of healthcare providers in providing reproductive health education Assess attitudes and behaviors in reproductive health education of adolescent girls with type 1 diabetes	30% of healthcare providers never discussed pregnancy and 40% never discussed contraception 50% of healthcare providers reported being very uncomfortable discussing contraception Reproductive health education was only provided if the question was raised by the adolescent or their parent or if it was learned that the adolescent was sexually active Barriers included insufficient time, lack of knowledge, healthcare providers prioritise diabetes control, perception of lack of maturity of adolescents Lack of training	Conducted in a single institution Sample limited to those fluent in English Pilot was very small Survey inquired that attitudes leaving social desirability bias
12	Jeraiby²⁰ 2021	Saudi Arabia	Cross-sectional study	187 women of childbearing age with type 1 diabetes	Assess awareness of PPC among women with type 1 diabetes and their self management status	Almost 37% of participants thought they cannot become pregnant with type 1 diabetes 25.1% said that pregnancy is dangerous for mother and baby when a woman has type 1 diabetes 67.3% were unaware of needing retinal screening 51.3% one aware of the need for 5 milligram folic acid -those who attended at or above second level education were more aware	Single center study
13	Glinianaia²³ 2014	UK	Survey Multiple logistic regression	2293 pregnancies in women with type 1 or type 2 diabetes over 15 years	To investigate trends and indications of preparation for pregnancy by women with type 1 and type 2 diabetes and explore their predictors	21.4% of pregnancies resulted in adverse outcomes Adverse outcomes in 28.5% of those not attending PPC 18.1% in those attending PPC Unmarried less likely to attend PPC Older women less likely to attend PPC Women with low income less likely to attend PPC	Large study over long time span
14	Griffiths⁴⁶ 2008	UK	Semi-structured interview	15 women with type 1 diabetes 20–30 weeks pregnant	To explore women's accounts of their journey to becoming pregnant with type 1 diabetes	Women felt they were the experts PPC provokes anxiety Formal PPC can have unintended consequences PPC needs to be given in some degree at every contact with women	Small study Limited to women who are currently pregnant No ethnic diversity Details can be sketchy when talking to a pregnant woman about becoming pregnant
15	Grady²⁷ 2016	USA	Self-reported survey	147 nulligravid women with type 1 diabetes recruited online	To examine how women understand their ability to experience a healthy pregnancy and reduce their risk of adverse outcomes	76.2% of women had not received any PPC 34% had requested PC advice 56.5% of those who had received PPC had received it from endocrinologist	Internet access is restrictive Self reporting can lead to social desirability bias Anticipation of behavior was asked about but no report on actual behavior
16	Giraudo⁴⁸ 2021	Chile	Quantitative research questionnaires	109 women with type 1 diabetes and 362 women without diabetes aged 12–25 years. Parents signed consent for those <18	To evaluate risky behaviors including unprotected sexual intercourse, sources of information and knowledge related to reproductive health in comparison with those without diabetes	57.1% of women with type 1 diabetes had unprotected sex compared with 50% of the control group Low score knowledge about pregnancy and diabetes Having a chronic condition interferes with acceptance to peer group leading to risk-taking Type 1 diabetes and trouble with self care leads to difficulty in other healthcare areas Parents are a great source of education and reproductive health PPC should begin to transition clinics during puberty	Patients with type 1 diabetes were recruited from educational activities and therefore may represent selection bias s Self reporting can be explicitly biased when relative to reproductive health Limited number of confounding factors were assessed
17	Fischl³⁸ 2010	USA	Randomized control trial	88 teens with type 1 diabetes	To evaluate the impact of PPC program for teens with type 1 diabetes	This program can empower women to make well informed reproductive health choices This program reduces barriers to seeking PPC This program brought enhanced patient provider interaction	Mainly Caucasian patients Short time span Small sample
18	Ennack²⁵ 2016	Morocco	Survey	33 young adults with type 1 diabetes	To evaluate the perception of conception in young women with type 1 diabetes Aim to integrate pre-conception education at an early stage	All patients reported never having information about contraception preparation 66.6% did not know that congenital malformations was a complication of pregnancy with diabetes There was a huge lack of knowledge in women with diabetes and this could be due to the unwillingness of healthcare providers to change PPC education	Smmall sample Telephone survey may mean lack of trust
19	Charron-Prochownik²⁶ 2006	USA	Interviews	80 adolescents	To explore awareness of issues related to diabetes in pregnancy, PPC and contraception	34% said they knew nothing about diabetes in pregnancy 65% knew nothing about PPC 57% would not ask endocrinologist if they wanted to know about pregnancy 33% did not know where to get advice When needing birth control 36% would ask the GP, 25% would ask gynecologist, 5% would ask parent and 1% would ask a friend	Convenience sample so sample may not be generalizable Homogenous sample of Caucasian households
20	Earle²⁸ 2017	UK	Mixed methods, systematic review and quantitative interview	Two primary sites and 11 secondary site 12 interviews with women with diabetes and 18 qualitative studies	To identify facilitators and barriers to uptake of PPC	There is a lack of clarity about what PCC involves for women There are issues over who should provide PCC Need to treat women as those who need to make changes rather than women at risk of failure Importance of effective relationship between woman and healthcare professional Professionals need to: understand complexity of pregnancy planning Support women's knowledge of pregnancy plan and risk Understand everyday lives and needs Some women seemed confused about fertility status, suggests a need for nuanced approach to PCC Main reason for non-attendance was lack of awareness Time off work was major issue More likely to attend if treated with dignity and respect Random way in which women are referred to PCC shows that current responsibilities are not meeting needs of women Clear referral pathways are required	Small sample Study closed early due to small sample
21	Carrasco-Falcon³¹ 2018	Spain	Cross-sectional descriptive observational study	50 women with type 1 and type 2 diabetes	To identify the associated factors and barriers related to involvement of these women in PPC	19% of pregnant women with diabetes attended PPC Those attending PPC have higher education levels, were employed and were married Those attending PPC were more likely to have more complication of diabetes and monitored more closely by endocrinologist Those not attending PPC were more likely to be cared for by GP 41% of pregnancies in those who do not attend PPC were unplanned 11% did not realize they needed PPC Those attending PPC had more positive relationship with the rendering ologist	Small sample Questions completed at clinics prior to appointments may be biased
22	DPSG³² 2005	France	Multicenter cross-sectional study	138 women with type 1 diabetes	To assess knowledge about PPC in women with type 1 diabetes of childbearing age To identify factors associated with absence of PPC	85% of women with type 1 diabetes had received information about PPC; however, only 48.5% attended PPC 78% attended from a diabetologist 28% from leaflets Many women have inadequate knowledge about complications 28% of women thought neonatal diabetes was one of the complications 48% did not know that a congenital anomaly was a risk Women who receive information from a diabetologist were no more aware of congenital anomalies or availability of PPC than those who did not receive information There is a need to improve information strategies for PPC for women with type 1 diabetes	Reasons for poor attendance was not investigated in this study
23	O'Higgins³³ 2013	Ireland	Semi-structured interview	Women with type 1 and tyoe 2 diabetes who are pregnant or of child bearing age	To better understand why women with diabetes chose to attend PPC and identify barriers to attendance	Only 30% of women invited to attend PPC did Reasons for attending were health and welfare of mother and baby to facilitate monitoring and support Reasons for non-attending included lack of awareness, time management, work and childcare, frequency of appointments, negative prototype image descriptions IE lazy idiots, fear, lack of confidence, embarrassment or fear being lectured or labeled	Small sample Exploratory addendum to a much larger project All Caucasian participants
24	Morrison¹⁸ 2018	Australia	Cross-sectional survey	429 women with type 1 and type 2 diabetes	To describe factors associated with uptake of diabetes-specific PPC Determine perceived helpfulness of attending PPC Determine reasons for non-attendance at PPC	48% of women did not know about PPC 47% of pregnancies were unplanned women feel they already knew what to do They did not feel comfortable talking to their healthcare professional about this topic or had previous negative experiences talking to their HCP about this topic They did not think it was important Those with previous unplanned pregnancies were less likely to attend PPC subsequently	Low response rate Study administered in English and some non-English speakers excluded
25	Hendrieckx²¹ 2021	Australia	Survey	526 women with T1DM and 103 women with type 2 diabetes	To assess differences in knowledge and beliefs about pregnancy in women with diabetes	Women with T1DM had better knowledge about pregnancy Major knowledge gaps were needed for high-dose folic acid Women with t1DM were more likely to use contraception and access PPC	Women with T2DM underrepresented
26	Komiti²⁴ 2013	Australia	The Health Belief Model, Social Cognitive Theory, and Theory of Reasoned Action	123 women with T1DM and T2DM	To further our understanding of the factors-associated PPC uptake	Exposure to a greater number of cues predicts PPC attendance Older age and not having children predict PPC attendance	Participants were recruited from a tertiary referral centre Women attending these services were more likely to have received specialised care. Findings from this study not generalisable to other populations
27	Mortagy⁵⁰ 2010	UK	Qualitative cross-sectional study	18 GPs involved in delivering care to women with pre-gestational diabetes	Explore the perspective of GPs and secondary care health professionals on the role of GPs in delivering preconception care to women with diabetes.	GPs and secondary care professionals differ in their perception of the number of women with diabetes requiring preconception care and the extent to which preconception care should be integrated into GPs' roles. Health professionals agreed that GPs have a significant role to play and that delivery of preconception care is best shared between primary and secondary care Lack of clear guidelines and shared protocols detailing the GP's role presents a challenge to implementing ‘shared’ preconception care	May not present perspectives of all clinical disciplines that may be involved in this area
28	Bolla⁵¹ 2013	Italy	Anonymous online questionnaire	395 healthcare professionals	Document training and knowledge on diabetes and pregnancy among diabetes professionals	59% of specialists have training in Diabetes and pregnancy 43% correctly identified fetal risks 55% identified maternal risks	Low rate of competition
29	Magdelano⁴⁹ 2020	Spain	Retrospective cohort study	577 women with diabetes	Identify barriers to preconception counselling To determine differences between family medicine, internal medicine, and obstetrics and gynaecology	88.7% of primary care providers indicated that preconception counselling was important 39.2% reported that they regularly provide preconception counselling
30	Zhou³⁰ 2018	China	Retrospective review	178 women with T1DM	Assess the awareness of preconception counselling in childbearing age women with T1DM	85.9% of patients know the glycaemic targets for pregnancy 2.2% worrying T1DM women cannot get pregnant 93.6% understood the need for folic acid 65.6% received preconception counselling; patients with preconception counselling had better glycaemic control before pregnancy compared with those without counselling	Small cohort, results not generalisable
31	McCorry³⁶ 2012	UK	Semi-structured interviews	14 non-pregnant women with T1DM	Explore the attitudes about pregnancy and preconception care seeking in a group of nonpregnant women with	4 main themes identified the emotional complexity of childbearing decisions preferences for information related to pregnancy the importance of being known by your health professional frustrations with the medical model of care.	Small cohort, results not generalisable

Abbreviations: DPSG, diabetes in the pregnancy study group; PPC, pre-pregnancy care.

3.3 Findings

There are many barriers and facilitators discussed within all the studies; however, several recurring factors were identified, and these will be discussed in depth.

3.3.1 Patient-centered findings

The demographic of participants who attended PPC was analyzed in most of the studies listed below. In general, women attending PPC were older than those who did not, were less likely to have children already, had higher levels of education, were more likely to be married and had better glycaemic control than those who did not.^18-24

Knowledge

The striking recurring theme within all the studies was the lack of awareness about the need for or availability of PPC.^{18, 19, 22, 25-31} In one study, none of the participants reported receiving information on pregnancy preparation²⁵; and in another study, no patient was offered PPC, and more than 50% had never heard the term preconception counselling.²⁶ While lack of awareness of PPC was very common, rates approached 85% in other studies.³²

Other barriers included patients not being aware of the need for PPC or the potential complications of diabetes in pregnancy.^{20, 25, 28, 31-35} Over 25% of women surveyed reported no complications associated with pregnancy in diabetes.³¹ Nearly 40% of women thought they could not get pregnant and one-third knew the importance of retinal screening in pregnancy²⁰ and almost half did not know the risk of congenital anomaly in diabetes.³² Another study identified that women were keen to receive details information about pregnancy, but experienced anxiety around potential complications.³⁶ Follow-up studies of women who received PPC as teenagers found higher rates of PPC and planned pregnancies in adulthood compared with women who did not and found fewer barriers to PPC, demonstrating the importance of PPC at every stage.^{37, 38}

Unplanned pregnancies

Unplanned pregnancies occur in as many as 16.2% of pregnancies.³⁹ This percentage is much higher in women with diabetes. In one study, 41% of pregnancies were unplanned⁴⁰ and rates as high as 45.1%–47% have been reported.^{18, 19} Unplanned pregnancies were a common reason for not attending PPC.^{18, 19, 21, 31}

In the general population, risk factors for unplanned pregnancies include the use of illicit drugs and alcohol; wanting to be accepted by peer groups; lack of knowledge about contraception and sexual abuse.⁴¹

For women with diabetes risk factors for unplanned pregnancies are having type 2 diabetes, lower levels of education, smoking, lower self-reported quality of life, negative relationships with healthcare providers, previous unplanned pregnancies and being involved in unhappy relationships. Women with unplanned pregnancies are also younger and less likely to be married.^{21, 40}

Women with T1DM and unplanned pregnancies have a higher HbA_1C entering pregnancy¹⁹ and represent a high-risk obstetric group with high rates of neonatal hypoglycaemic and neonatal care.^{42, 43}

Despite the frequency of unplanned pregnancies, the majority of HCPs are reluctant to initiate the conversation on contraception and will only do it if the parent or the patient enquires about contraception or on finding on the patient is sexually active.³⁴

Negative perception of healthcare and communication issues

Many studies also evaluated women's perspectives of healthcare interactions and their diabetes control.^{18, 19, 31, 35} A small percentage of the women interviewed in one study felt they knew enough about the diabetes to manage it well before pregnancy and did not consider it necessary.^{18, 19, 31} Others felt that attending PPC would be an intrusion, over-medicalize their pregnancy, make their pregnancy different to women without diabetes and some described their interactions as depressing.^{18, 35, 44, 45}

Studies explored the theme of negative patient–clinician interactions acting as a deterrent to discussing pregnancy.^{18, 27, 29, 33, 35, 46} In particular feelings of self-blame were associated with reduced attendance and poor outcomes.²⁷ In one study, more than 20% of women reported a negative relationship with their healthcare provider.³⁵ Other women felt fear was a strong deterrent from attending and clinicians should focus on the positive aspects of pregnancy.³³ Other studies stressed the importance of avoiding blame or judgement.^{29, 47} For participants who are actively thinking about pregnancy and contraception, the conversation can be difficult to initiate.¹⁸

To combat these barriers HCPs need to come up with new and innovative ways to assist and encourage women with diabetes to plan pregnancies and attend PPC, and patients should be empowered to access and request referrals at a time and through a medium that suits them.³⁸

Unclear attendance pathways and practical issues

Lastly, practical issues such as clear referral pathways and logistical issues were also reviewed. Four studies evaluated how patients attend PPC.^{19, 28, 29, 48} Endocrinologists, obstetricians and general practitioners were all common routes of referrals; however, women were occasionally uncertain about how best to access care. Studies found that 49% of referrals came from general practice; however, only 16% of those referred attended their appointment indicating sub-optimal communication between GP and the patient.¹⁹

Other studies found that 29% of women attending PPC were referred by their GPs, 57% by their endocrinologist and 14% through other sources.

Other logistical and practical factors identified were time restraints caused by childcare, work commitments, distance to clinic and forgetting appointments.^{18, 28, 33, 34, 47} Many also felt that greater education of family and friends would lead to much social support.³³

3.3.2 Clinician-centered findings

Clinician factors include physician knowledge, time constraints, lack of comfort discussing pregnancy/contraception and communication deficits.

Physician knowledge

A study performed by Magdaleno et al.⁴⁹ found that many professionals believe they are providing far more PPC than they actually are. It was found that only 18.9% of women reported having been informed about or received PPC whereas HPCs felt they had informed all women. Similarly Kohn et al. found that 30% of healthcare providers have had never discussed pregnancy and 40% had never discussed contraception with women with diabetes.³⁴ Many GPs report being unsure of their role in providing PPC⁵⁰ and not all endocrinologists have received formal training in diabetes and pregnancy.⁵¹ This is particularly evident as not all clinicians are willing to prescribe contraception to women with diabetes and sub-optimal control.⁵¹

From a patient perspective, patients feel that their GPs and practice nurses need to be more aware and more involved in the provision of care.^{33, 44}

Time constraints and lack of comfort

Primary care providers often report time constraints, feelings of discomfort regarding sexual health discussions and difficulty in initiating the conversation as barriers to discussing contraception.^{34, 49, 50, 52} Others feel that while reproductive health is important, 21% of healthcare providers feel that other aspects of diabetes care should take precedence.³⁴

4 DISCUSSION

A large body of evidence demonstrates benefits from PPC for women with diabetes, their offspring and the health service; however, attendance rates continue to be below 50%.^{7, 15} The broad geographical range from which studies originate does demonstrate that this is a global problem, however with only 24 relevant articles identified, it is clear that the prevention of diabetes-related complications through PPC is an under-studied area. It is also disappointing to see that many of these issues, which were identified as far back as 1996 still have not been resolved.^{40, 53} This scoping review identified many of the reasons why PPC attendance is so low, and many ways in which small changes could make a significant difference to overcome this problem. These issues can be categorized under patient-centered and clinician-centered headings. Patient factors include knowledge and awareness, unplanned pregnancies, negative perceptions of healthcare and communication issues, unclear attendance pathways and logistical issues including time off work and childcare. Clinician factors include physician knowledge, time constraints and lack of comfort discussing pregnancy/contraception.

The first big change that can be made is ensuring that education regarding pregnancy complications begins at puberty for all girls with diabetes. Women and teenage girls should know that a pre-pregnancy service is available and how they can access this service. This knowledge imparted to young women can then be used in later life and have major health benefits for decisions made in adulthood.⁵⁴ Sereika et al. demonstrated that women who are given information about PPC as an adolescent are more likely to use effective birth control and look for guidance from a HCP when planning a pregnancy.³⁷ A deterrent to providing contraception advice to adolescents may be a perceived feeling of awkwardness in initiating the conversation; however, this needs to be overcome to deliver high standards of healthcare delivery.³⁴

All the studies reviewed demonstrated the lack of knowledge regarding the need for PPC and that many women fail to realize the potential complexity of diabetes and pregnancy.

Studies have highlighted the issue of time limitations during consultations to raise the issue of birth control and pre-conceptual counseling. Lack of knowledge within primary healthcare teams has also been displayed.

To improve attendance in this area clinicians should focus on improved communication.³⁵ Service planners and managers need to be made aware of these issues and consider the benefits of providing finance and education to HCPs so that their knowledge can be updated and maintained. It is vital that there is no conflicting information given to women as this can lead to lack of trust, a reluctance to engage in the future and increased levels of fear and self-protection in doctors.⁵⁵

A number of studies also evaluated the prevention of unplanned pregnancies. Recommendations are made within many studies to commence education about contraception and PPC at puberty and continue throughout childbearing age as unplanned pregnancies are not simply confined to the teens and early twenties.^{23, 29, 35, 37, 48} Despite the frequency of unplanned pregnancies, HCPs are reluctant to hold this conversation. The frequency of unplanned pregnancies highlights the need for new and innovative ways to improve how young women get access to this important information regarding contraception and allow them to make an informed decision about attending these vital clinics.²⁸

It is also important that attendance at pre-pregnancy clinic does not disrupt the woman's day-to-day life. Clinics that run during office hours are not always suitable for women to attend. Work and childcare commitments make attendance at these clinics very difficult, and many women do not want to take time off work or let their employers know they are planning pregnancy. The provision of clinics with the professional highly qualified in diabetes and pregnancy, at a time that suits most women, would prove beneficial and cost-effective when balanced against the potential complications of an unplanned pregnancy. Primary care, and community-based PPC have been successful in women with type two diabetes.⁵⁶ Digital healthcare education initiatives have been successful and well received in other areas of maternal health,⁵⁷ and young, especially computer-literate women appreciate digital educational resources.⁵⁸

Relationships with HCPs are also crucial. Poor attendance is known to be a major problem in people with diabetes worldwide.⁵⁹ As much of diabetes management relies on effective self management guilt can become part of daily living when participants feel they have not met the expected targets.⁶⁰ Participants feel that constant correction becomes a routine part of their consult with HCP and relationships can become very difficult. Archer et al. explain that pointing out a patient's failings and poor control is a trigger for guilt and shame⁶⁰ which leads to non-attendance. Failure to attend routine diabetes and endocrine clinics may lead to a decline in health, a lack of valuable knowledge and re-attendance can be very difficult to establish.⁵⁹ Holistic treatment of diabetes requires the treatment of the person as much as the disease; however, the importance of this can be lost in the busy clinic environment.⁶¹ While improving relationships can take a long time and require ongoing effort, the introduction of a new and qualified HCP can improve patient care. Nurse-led education is often positively viewed by participants and the identification of a key worker or supporter for a patient with diabetes who helps patients engage with the healthcare system is being evaluated in young adults with type 1 diabetes.^{62, 63} Employment of additional staff would also ease the burden of under-staffing, which is widely recognized as a barrier to effective diabetes care and reduce the over-reliance on non-specialists, which often typifies diabetes care.^{64, 65}

This study has a number of strengths. We used a robust methodology to identify all relevant studies and provide a comprehensive and detailed review of the current literature. The limitations of this study include the exclusion of studies published in languages other than English and the exclusion of women with type 2 diabetes mellitus. Type 2 diabetes now accounts for between one third to half of the pregnancies in women with diabetes.^{3, 66} Our review demonstrates that women with type 2 diabetes were less likely to get PPC than those with T1DM.^{18, 21} Women with type 2 diabetes face particular challenges in their pregnancies including older age and higher BMIs on entering pregnancies and slightly higher rates of neonatal deaths compared with women with type 1 diabetes (1.1% vs. 0.7%, p = 0.013).⁶⁶ These adverse events happen despite better blood glucose control on entering pregnancy; however, the higher rates of smoking, teratogenic medication use and hypertension at conception indicated that this group stands to benefit significantly from PPC. Future studies should aim to address the barriers to PPC attendance in this cohort.

5 CONCLUSION

Despite the clear benefits for both mother and infant, PPC remains poorly attended among women with type 1 diabetes. This scoping review categorises and provides a comprehensive summary of the identified barriers to attendance at PPC in this population. These data provide a framework on which to develop PPC programs that are effective and accessed by a majority of women with type 1 diabetes (Table 2).

AUTHOR CONTRIBUTIONS

Pauline Ferry, AEM and Fidelma P. Dunne contributed to the original idea and design of the study. Pauline Ferry, Catherine Meagher, Roisin Lennon and Christine Newman carried out the literature search and reviewed abstracts. Christine Newman and Pauline Ferry compiled results and drafted the manuscript. All authors contributed to manuscript revision and approved the final manuscript. Christine Newman is responsible for the integrity of the work as a whole.

ACKNOWLEDGMENTS

We wish to acknowledge Dr Linda Biesty, senior lecturer in midwifery at the National University of Ireland, Galway, for her conceptual guidance for this work.

CONFLICTS OF INTEREST

The authors have no conflict of interest to declare.

Open Research

DATA AVAILABILITY STATEMENT

Data derived from public domain resources.

Supporting Information

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Citing Literature

Volume40, Issue3

March 2023

e15014

Attendance at pre-pregnancy care clinics for women with type 1 diabetes: A scoping review

Abstract

Introduction

Methods

Results

Conclusion

What's new?

1 INTRODUCTION

2 METHODS

2.1 Literature search

2.2 Study selection

2.3 Data extraction

3 RESULTS

3.1 Search results

3.2 Study characteristics

3.3 Findings

3.3.1 Patient-centered findings

Knowledge

Unplanned pregnancies

Negative perception of healthcare and communication issues

Unclear attendance pathways and practical issues

3.3.2 Clinician-centered findings

Physician knowledge

Time constraints and lack of comfort

4 DISCUSSION

5 CONCLUSION

AUTHOR CONTRIBUTIONS

ACKNOWLEDGMENTS

CONFLICTS OF INTEREST

Open Research

DATA AVAILABILITY STATEMENT

Supporting Information

REFERENCES

Citing Literature

Figures

References

Related

Information