Clinical Guidelines and Standards · Diagnostic Criteria and Classification

The International Glossary on Infertility and Fertility Care, 2017

Zegers-Hochschild F, Adamson GD, Dyer S, Racowsky C, de Mouzon J, Sokol R, Rienzi L, Sunde A, Schmidt L, Cooke ID, Simpson JL, van der Poel S

Published September 2017 Human Reproduction (Oxford, England), 32(9), 1786-1801
DOI 10.1093/humrep/dex234 PMID 29117321 PMC PMC5850297

RRM Academy Synopsis

International glossary sets 283 shared terms for infertility care

Experts and patient representatives agreed on 283 terms for infertility care in a 2017 global glossary. The glossary defines infertility as a disease and as an impairment of reproductive capacity. Five working groups of 25 professionals drafted the terms, and 108 professional experts took part in the consensus process.

Key Findings

  • Experts and patient representatives reached consensus on 283 terms and definitions, listed alphabetically. The monitoring committee ICMART led, with partner societies and organizations including ASRM and ESHRE.
  • The glossary widens the definition of infertility to cover individuals, with or without a partner. The definition keeps infertility as a disease that can impair function.
  • Subfertility became a redundant term and now means the same as infertility. Sterility names a permanent state of infertility.
  • The glossary removes the term conception. Consensus held that efforts should be made to use terms such as fertilization, implantation, pregnancy and live birth in its place.
  • Most terms were agreed at a September 2015 meeting. A vote counted as consensus when it passed with 75%. An external group then reviewed the glossary for 9 months.

Interpretation

The glossary is an expert consensus document. Five working groups of 25 professionals drafted the terms, and a consensus meeting then reviewed them with all participants. In all, 108 professional experts took part, along with patient representatives. ICMART monitors assisted reproduction. The authors say some terms were kept consistent with ones the international fertility community already uses. The authors say the 2009 disease definition helped structure debate on access to care, including a 2012 court decision on Costa Rica.

RRM Context

Restorative reproductive medicine sees trouble getting pregnant as a sign of an underlying cause in both partners. The glossary adds terms for male infertility, including andrology laboratory terms. Clinicians in any approach gain shared words to evaluate the male partner. Consensus held that efforts should be made to replace spontaneous pregnancy with terms for pregnancies resulting from medical assistance or without assistance. Reports on restorative care can use that wording.

Abstract

Study Question

Can a consensus and evidence-driven set of terms and definitions be generated to be used globally in order to ensure consistency when reporting on infertility issues and fertility care interventions, as well as to harmonize communication among the medical and scientific communities, policy-makers, and lay public including individuals and couples experiencing fertility problems?

Summary Answer

A set of 283 consensus-based and evidence-driven terminologies used in infertility and fertility care has been generated through an inclusive consensus-based process with multiple stakeholders.

What Is Known Already

In 2006 the International Committee for Monitoring Assisted Reproductive Technologies (ICMART) published a first glossary of 53 terms and definitions. In 2009 ICMART together with WHO published a revised version expanded to 87 terms, which defined infertility as a disease of the reproductive system, and increased standardization of fertility treatment terminology. Since 2009, limitations were identified in several areas and enhancements were suggested for the glossary, especially concerning male factor, demography, epidemiology and public health issues.

Study Design, Size, Duration

Twenty-five professionals, from all parts of the world and representing their expertise in a variety of sub-specialties, were organized into five working groups: clinical definitions; outcome measurements; embryology laboratory; clinical and laboratory andrology; and epidemiology and public health. Assessment for revisions, as well as expansion on topics not covered by the previous glossary, were undertaken. A larger group of independent experts and representatives from collaborating organizations further discussed and assisted in refining all terms and definitions.

Participants/Materials, Setting, Methods

Members of the working groups and glossary co-ordinators interacted through electronic mail and face-to-face in international/regional conferences. Two formal meetings were held in Geneva, Switzerland, with a final consensus meeting including independent experts as well as observers and representatives of international/regional scientific and patient organizations.

Main Results and the Role of Chance

A consensus-based and evidence-driven set of 283 terminologies used in infertility and fertility care was generated to harmonize communication among health professionals and scientists as well as the lay public, patients and policy makers. Definitions such as 'fertility care' and 'fertility awareness' together with terminologies used in embryology and andrology have been introduced in the glossary for the first time. Furthermore, the definition of 'infertility' has been expanded in order to cover a wider spectrum of conditions affecting the capacity of individuals and couples to reproduce. The definition of infertility remains as a disease characterized by the failure to establish a clinical pregnancy; however, it also acknowledges that the failure to become pregnant does not always result from a disease, and therefore introduces the concept of an impairment of function which can lead to a disability. Additionally, subfertility is now redundant, being replaced by the term infertility so as to standardize the definition and avoid confusion.

Limitations, Reasons for Caution

All stakeholders agreed to the vast majority of terminologies included in this glossary. In cases where disagreements were not resolved, the final decision was reached after a vote, defined before the meeting as consensus if passed with 75%. Over the following months, an external expert group, which included representatives from non-governmental organizations, reviewed and provided final feedback on the glossary.

Wider Implications of the Findings

Some terminologies have different definitions, depending on the area of medicine, for example demographic or clinical as well as geographic differences. These differences were taken into account and this glossary represents a multinational effort to harmonize terminologies that should be used worldwide.

Study Funding/Competing Interests

None.

Trial Registration

N/A.

Topics

By this author

Related research

Clinical Guidelines and Standards › Diagnostic Criteria and Classification › Terminology and Definitions · Assisted Reproduction › Registries and Reporting › Reporting Methodology
Fernando Zegers-Hochschild, G David Adamson, Silke Dyer, Catherine Racowsky, Jacques de Mouzon, Rebecca Sokol, Laura Rienzi, Arne Sunde, Lone Schmidt, Ian D Cooke, Joe Leigh Simpson, Sheryl van der Poel
F Zegers-Hochschild, S Dyer, Cathy Racowsky, Kate Racowsky, C Racowsky, J Mouzon, Becky Sokol, R Sokol, L Rienzi, A Sunde, L Schmidt, I Cooke, Joseph Simpson, J Simpson, S Poel
PMID 29117321 29117321 DOI 10.1093/humrep/dex234 10.1093/humrep/dex234 Zegers-Hochschild et al. 2017, Zegers-Hochschild 2017