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Fertility awareness and quality of life

assessment and impact of fertility problems and infertility

Bayoumi, Rasha R., PhD; van der Poel, Sheryl Z., PhD; Koert, Emily, PhD; Boivin, Jacky, PhD

Global Reproductive Health: December 2018 - Volume 3 - Issue 4 - p e21
doi: 10.1097/GRH.0000000000000021
Brief Reports

Preventative interventions particularly in the form of health awareness have gained prominence as sustainable mechanisms that improve and address gaps in access to health care, including fertility care, especially in low and middle-income countries. Increasingly targeted are preventative as well as supportive care interventions which can impact the quality of life experienced by individuals with fertility problems and infertility. The aim of this brief report is to draw attention to two inexpensive self-administered tools that can be used to begin to tackle these issues; the Fertility Status Awareness tool (FertiSTAT) and the Fertility Quality of Life (FertiQoL) tool. These tools can be utilized in research and clinical settings to help address fertility care needs and identify interventions required at individual and community level. The FertiSTAT and FertiQoL tools have the potential to assess signs, symptoms and preventable causes as well as psychological and social care needs of individuals experiencing fertility problems and infertility. In addition, these tools can function either independently or together within various communication channels, as well as educational and service delivery systems.

Cardiff Fertility Studies Research Group, School of Psychology, College of Biomedical and Life Sciences, Cardiff University, Cardiff, Wales, UK

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

Published online 6 September 2018

Corresponding author Address: Cardiff Fertility Studies Research Group, School of Psychology, College of Biomedical and Life Sciences, Cardiff University, 70 Park Place, Cardiff CF10 3AT, Wales, UK. Tel.: +44 (0)29 2087 5381. E-mail address: bayoumir@cardiff.ac.uk (R.R. Bayoumi).

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. http://creativecommons.org/licenses/by-nc-nd/4.0/

Received July 11, 2018

Accepted August 10, 2018

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Introduction

Preventative care in the form of educational awareness and interventions at community level have gained popularity particularly in low and middle-income countries due to cost-effectiveness of such interventions coupled with reduced burden at the level of clinical health care systems. Such effective community-based education and scaling-up of evidence-based interventions has been reported by the World Health Organization (WHO) to provide sustainable improvement that address gaps in access to sexual and reproductive health care1. Addressing preventative and supportive interventions for “fertility care”2,3 and infertility is becoming a priority area of sexual and reproductive health research and care. Self-administered patient-report tools are inexpensive to implement and additionally are able to address the need for fertility care, to identify psychosocial impact on quality of life and to target areas for psychosocial support and intervention.

The development and adaptation of specific tools for Fertility Awareness (FertiSTAT)4 and Fertility Quality of Life (FertiQoL)5 help to address these needs at individual and community level and this process has been led and coordinated by Cardiff University staff, together with multiple collaborators and advisors, including WHO staff.

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The FertiSTAT

Sociocultural, geographic, and economic factors affect exposure to risks that impact fertility. Globally, knowledge of fertility (eg, fertile window and effect of age) and risk factors (eg, smoking, sexually transmitted infections) is poor. Educational efforts to improve knowledge of these factors and risks (ie, fertility awareness) could help in prevention of, and early referral to address, fertility problems, and infertility.

FertiSTAT, a fertility awareness intervention, is a self-administered, multi-factorial “one-page” tool for women with 22 risk indicators (www.fertistat.com). Developed to increase awareness about risk factors for reduced fertility and to provide personalized guidance. FertiSTAT is one of the more comprehensive fertility awareness tools: in its coverage of risk factors and specific critical thresholds (eg, number of cigarettes at which smoking likely impacts fertility); and, with an accuracy to determine fertility status (ie, medically confirmed pregnant or infertile) in women comparable to ovulation determination tests. FertiSTAT uniquely accounts for the variable importance of risk factors in predicting fertility (eg, smoking vs. amenorrhea) and takes into consideration the multiplicative relationship between risk factors (eg, age and months attempting to become pregnant). An adaptation in the Middle East, based upon research designed to enhance global utility especially in low and middle-income countries and similar settings, has led to inclusion of additional reproductive and lifestyle risk factors with development of additional tools (flipchart, checklist). These added risk factors include, among others, exposure to or risk of: specific forms of female genital mutilation/cutting, consanguineous relationships, lack of exposure to the sun (specific vitamin deficiencies), HIV, genital tuberculosis. The prototype flipchart comprises 34 paired provider-user pages whereas the checklist comprises a 2-panel (male, female), single-sided A4 checklist6.

The potential utility of the updated FertiSTAT (Fig. 1, left side) includes education at both community and individual level to reduce preventable risk factors and their sequelae (eg, screening for tuberculosis to prevent untreatable tubal damage). FertiSTAT can be used as a cost-effective checklist in patient triage to augment health care referral systems that identify those requiring additional diagnostics. Increasingly young people are attending fertility clinics to confirm their fertility status, and for example, in Scandinavia this need was met by using questions inspired by FertiSTAT. Research in the Sudan, found that the majority of fertility clinic patients were married, however, mothers with their young daughters were also brought to clinic for determination of fertility status before marriage. FertiSTAT also provides opportunities to open communication about sensitive topics that may otherwise not be discussed but could have detrimental effects on future fertility (eg, effects of condom-less sex with multiple sexual partners.) FertiSTAT can be utilized as a framework to support or enhance other research questions (eg, estimating fertility knowledge and assessing unmet need for fertility care and infertility).

Figure 1

Figure 1

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The FertiQoL

The negative impact of infertility on quality of life (QoL) has been well documented. For example, in Middle-Eastern and African countries, infertility has been shown to be a major concern for couples, and can cause extreme psychological consequences, especially for women.

FertiQoL is an instrument to measure QoL in individuals with fertility problems that was patterned after the WHO QoL tool. FertiQoL includes a Core component of 24 items that measure the impact of fertility problems on 4 subscales: emotional, mind-body, relational, and social QoL. The optional treatment component is a measure of treatment QoL that includes treatment tolerability and environment. A higher score on all subscales and total scores indicates a greater QoL. It is inexpensive and easy to administer in both clinical and community settings, with broad utility due to translation into 44 languages (www.fertiqol.org). New language translations include Arabic-Tunisia, Hindi, Indonesian, Malay, Malayalam, Portuguese-Brazil, Sinhalese, Swahili, and Urdu.

FertiQoL addresses the unmet need for a more standardized approach to fertility-specific QoL measurements for patient and provider understanding and service delivery (Fig. 1, right side). A recent systematic search on FertiQoL research evidence identified 41 published articles (Koert et al, under review). On the basis of the search analysis, FertiQoL appears to perform well as a QoL instrument to reliably measure the impact of fertility problems and infertility across all domains and can predict QoL in diverse settings. Its uses include the assessment of need for psychosocial care during infertility diagnosis and treatment in order to direct targeted support strategies and interventions. In service development, FertiQoL can be used to identify treatment approaches more tolerable to patients (eg, fewer effects on physical or mental health, daily life) or that enhance the patient treatment environment (eg, accessibility, addressing needs). FertiQoL scores can be utilized to determine the degree of psychosocial burden that fertility problems place on overall QoL and identify factors (eg, socio-demographic, cultural, medical) that increase or decrease QoL within and between countries. In addition, from a policies and practices perspective, FertiQoL can be used to address research questions to help discover solutions that could lessen the psychosocial burden on couples and individuals with fertility problems and infertility.

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Conflict of interest disclosures

The authors declare that they have no financial conflict of interest with regard to the content of this report.

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References

1. World Health Organization. Strengthening the capacity of community health workers to deliver care for sexual, reproductive, maternal, new born, child and adolescent health. H4+ (UNAIDS, UNFPA, UNICEF, UN Women, WHO and the World Bank). 2015. Available at: www.who.int/workforcealliance/knowledge/resources/who_2015_h4_chws_srmncah.pdf. Accessed September 2017.
2. Zegers-Hochschild F, Adamson GD, Dyer S, et al. The international glossary on infertility and fertility care. Hum Reprod 2017;32:1786–801.
3. Zegers-Hochschild F, Adamson GD, Dyer S, et al. The international glossary on infertility and fertility care. Fertil Steril 2017;108:393–406.
4. Bunting L, Boivin J. Development and preliminary validation of the fertility status awareness tool: FertiSTAT. Hum Reprod 2010;25:1722–33.
5. Boivin J, Takefman J, Braverman A. The fertility quality of life (FertiQoL) tool: development and general psychometric properties. Hum Reprod 2011;26:2084–91.
6. Bayoumi RR, van der Poel S, El Samani EZ, et al. An evaluation of comprehensiveness, feasibility and acceptability of a fertility awareness educational tool. Reprod Biomed Soc Online 2018. Available at: https://doi.org/10.1016/j.rbms.2018.06.003.
Keywords:

Fertility awareness; Fertility quality of life; FertiSTAT; FertiQoL

Copyright © 2018 The Authors. Published by Wolters Kluwer on behalf of the International Federation of Fertility Societies. All rights reserved.