Measurement and evaluation of quality of life and well-being in individuals having or having had fertility problems: a systematic review

Abstract

Objectives: The aims of this study were: (1) to identify which measurement instruments are used in practice to assess the quality of life or well-being of individuals with and without (sub)fertility; (2) to describe the design and outcomes of studies comparing quality of life or well-being of individuals with and without fertility problems; and (3) to determine which of the outcomes of the identified studies could be used in cost-utility studies. Methods: A systematic literature review was performed of studies published before July 2018, using multiple databases. Included studies investigated (health-related) quality of life or well-being of individuals with fertility problems. The applied instruments were assessed, as were the outcomes and suitability for use in cost-utility studies. Results: Twenty-six studies met the inclusion criteria. Twelve distinct instruments of measurement were applied: two generic quality-of-life instruments, five generic well-being instruments and five disease-specific instruments. Most studies found negative associations in one or more domains assessing fertility problems and quality of life or well-being. However, two studies found the opposite. None of the studies reported outcomes relevant for cost-utility studies. Conclusion: Quality of life and well-being related to having fertility problems are regularly studied. However, the reported information is not suitable for use in cost-utility studies. There is a clear need for studies investigating the impact of fertility problems on quality of life in a way that outcomes can be compared across studies and disease areas.

Valuing live births from assisted reproduction: A health economics viewpoint

“…Translating quality of life measures collected in primary research into utility values required for generating QALYs to apply in CEAs implies the use of preference-based instruments [16]. It is common for studies assessing infertility or sub-fertility-related quality of life to use such instruments; nonetheless it is not common for these studies to report utilities or HRQoL measures that can be converted to utilities [21].…”

“…This approach fails to take into consideration that the perception of infertility and involuntary childlessness changes over time as people adapts, and over time there can often be limited differences in HRQoL between those with children and involuntarily childless couples [41e43]. Due to the limitations of many patient-reported outcome instruments, past reviews suggest that available HRQoL studies in infertile couples are not suitable for capturing utilities for use in CEAs [21]. When these observations are coupled with the varying biological effects of being pregnant, and the changing perception of involuntary childlessness over time, there are likely to be limits to applying QALY-based economic evaluations in MAR couples.…”

Empowering tomorrow's leaders: the impact of the 15th Network of Young Researchers in Andrology (NYRA) meeting on male reproductive health and interdisciplinary collaboration

“…The conventional method of its diagnosis involves examining semen parameters ( WHO, 2023 ), where sperm count has decreased by over 50% in the last 40 years, with a continuous decline of 2.6% per year among Western men ( Barratt et al, 2017 ; Levine et al, 2023 ). This decline not only impacts fertilization rates but also leads to increased disease burden and healthcare costs ( Hubens et al, 2018 ; Kasman et al, 2020 ; Levine et al, 2017 ). The root causes of male infertility are complex and diverse, including (epi)genetics, psychology, lifestyle, pathogens, and environmental insults (such as xenobiotics, oxidative stress, heat stress and chemotherapeutic agents) – all of which require further research to better understand their contributions ( Aitken, 2022 ).…”

Development and validation of the health-related quality of life instrument for Chinese infertile couples: a mixed-methods study protocol

“…However, empirical studies have shown that some items in the FertiQoL are poorly understood in a Chinese cultural setting and irrelevant to the Chinese health service system [ 21 ]. Generic HRQoL instruments such as EuroQol-5 dimensions-5 levels (EQ-5D-5L), Medical Outcomes Study 36-Item Health Survey (SF-36), WHO Quality of Life Measure (WHOQOL-BREF) have been frequently used to assess HRQoL among infertility patients [ 9 , 22 , 23 ]. However, the generic measures are not able to include important disease-specific domains, which are useful to detect clinical changes specific to infertility.…”