Partial Restriction. Restriction lift date: 2025-12-31
Infertility and recurrent miscarriage: an examination of pregnancy outcomes, services and patient experience
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Date
2024
Authors
Linehan, Laura Aoife
Journal Title
Journal ISSN
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Publisher
University College Cork
Published Version
Abstract
Background
Miscarriage and infertility are distinct reproductive health conditions which profoundly impact the lives of women and men affected. Although miscarriage is the most common complication of pregnancy affecting an estimated 23 million women globally a year, it remains poorly understood (1). There is a limited evidence base for investigation and treatments for miscarriage or recurrent miscarriage (RM), and approximately half of women/couples will have unexplained RM (2). Similarly, up to one in six couples are affected by infertility, this is an estimated 48.5 million people, with 30% having unexplained infertility (2,3). Miscarriage and infertility share a number of risk factors and are reciprocally associated, in addition to being associated with adverse pregnancy outcomes. The impacts of RM and infertility are also in parallel, with both experiences bearing psychological sequelae, economic burdens and isolation as a consequence of stigmatisation. Despite these commonalities, the dual experience of RM and infertility is not widely described in the literature or clinical practice guidelines and the optimal management of women/couples is unclear. RM and infertility are separately receiving greater attention from policy makers, nationally and internationally, therefore greater evidence is needed to inform policy and practice. Thus, the overall objective of this thesis is to examine the dual experience of RM and infertility and to add to the knowledge base on the current care issues, reproductive outcomes and lived experiences to inform improvements in care.
Methods
To meet this objective, a number of quantitative and qualitative studies were conducted. A narrative review of the literature was undertaken to determine what is known of the dual experience of RM and infertility and to identify the knowledge gaps (Chapter 2). A National Clinical Guideline was developed to provide evidence-based guidance for the management of RM in the Republic of Ireland (Chapter 3). A retrospective cohort study of women with three consecutive first-trimester miscarriages was undertaken to examine reproductive outcomes after RM, including women with a history of RM and infertility (Chapter 4). For this study descriptive and inferential statistics were utilised. A national service evaluation was conducted using key performance indicators (KPIs) for RM to establish how care for women/couples with RM and infertility compares to international recommendations (Chapter 5). These KPIs were also employed in an audit of RM and infertility care in a tertiary referral maternity hospital to examine how care compared to international recommendations (chapter 6). A qualitative semi-structured interview study of women with lived experience of RM and infertility and healthcare professionals working in these areas was also undertaken, utilising reflexive thematic analysis (Chapter 8).
Results
The narrative review (Chapter 2) demonstrated that women with RM and infertility are not well studied in the wider literature and feature predominantly within sub-groups of investigations or treatments, and their experiences are underexplored within qualitative studies. These findings are reflected in the exclusion of women with RM and infertility in international Clinical Practice Guidelines, thus it is unclear how best to manage and support this complex cohort. The National Clinical Practice Guideline for the management of RM (Chapter 3) sets out evidence-based recommendations for the structure of care, supportive care, investigation and treatment of RM, including subsequent pregnancy management. The retrospective cohort study of 748 women with RM (Chapter 4) found a subsequent pregnancy rate of 77%, with a cumulative live-birth rate of 63%. The multinomial regression analysis demonstrated that maternal age, smoking and parental karyotype were associated with reproductive outcomes. Additionally, there was a lower live-birth rate in women age over 40 years (44%) or with a history of infertility (54%). The national service evaluation (Chapter 5) found that while care is largely in line with international clinical practice guidelines, there is variation in counselling, imaging and surgical treatments offered. Areas for education identified included fertility counselling and resources for information provision and supportive care. Importantly, clinical outcomes were seldom audited. The audit of care for 128 women with RM and infertility (Chapter 6) found that alongside good clinical practice there are several areas for improvement: Counselling regarding risk factors and treatments, availability of genetic counselling, access to ultrasound and cytogenetic investigation should be improved. The subsequent pregnancy rate was 70% with a live-birth rate of 63% and a preterm birth rate of 11%, with 36% of women conceiving with assisted reproductive technologies. For the qualitative study (Chapter 7), 33 individuals were interviewed: 17 women with lived experience of RM and infertility and 16 healthcare professionals. Four themes were actively generated: “exploring all avenues”, “exhausting all resources”, “separateness” and “no woman is an island”, which captured this complex experience. The themes encompassed the challenges in seeking care and the many personal burdens of RM and infertility, which were compounded by stigmatisation, a lack of knowledge and awareness, the divisions within the healthcare system and the limited availability of supports.
Conclusions
This doctoral work has examined the dual experience of RM and infertility in the ROI and has provided meaningful insights into the difficulties within current service provision and the management of RM and infertility. This work has also provided guidance for evidence-based management for the care of women/couples with RM. It has made an important contribution to the literature in describing the reproductive outcomes for women following RM and RM and infertility. This thesis has also distinctly depicted the lived experiences of women with RM and infertility and also of relevant healthcare professionals. Through analysis of these findings, this thesis identified three overarching themes: 1) the dual experience of RM and infertility needs greater recognition; 2) there is a need for equity and balance in the care provided to women with RM and infertility; 3) information is central to improving care. Several recommendations for practice and policy are made. There is a need for greater education and training for healthcare professionals regarding reproductive health, which must be supplemented by increased availability of high-quality and accessible information resources for women and their families. Improvements in knowledge and awareness of RM and infertility must be accompanied by improved data collection to inform and develop services, identify inequities in care and better direct resources to improve access to RM and fertility care. There must be increased investment in supportive care for women/couples experiencing RM and infertility, with better acknowledgement of the life impacts of this experience on both partners. Recommendations from the Clinical Practice Guidelines for RM and for fertility must be appropriately resourced and implemented to facilitate standardisation of care, alongside implementation of the Assisted Human Reproduction legislation to ensure better regulation within fertility services. Future research must prioritise the inclusion of women with a dual experience of RM and infertility in investigations, treatments, and outcome studies, thereby enriching the evidence base for management. Moreover, there is a need to explore factors contributing to delayed childbearing in Irish society and develop strategies to enhance and disseminate reproductive health knowledge effectively. Facilitators and barriers to accessing fertility and RM care across all levels of society must be examined to address the current inequities in care. Further patient and public involvement in research are also necessary to identify the optimal supportive care and resources for women/couples with RM and infertility. Addressing these issues can promote a more compassionate, informed, and equitable approach to reproductive healthcare for individuals dealing with RM and infertility in the Republic of Ireland.
Description
Partial Restriction
Keywords
Pregnancy loss , Miscarriage , Infertility , IVF , Recurrent miscarriage
Citation
Linehan, L. A. 2024. Infertility and recurrent miscarriage: an examination of pregnancy outcomes, services and patient experience. PhD Thesis, University College Cork.