Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Oct 29, 2024
Open Peer Review Period: Nov 1, 2024 - Dec 27, 2024
Date Accepted: Apr 4, 2025
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Assessing the impact of infertility on patient quality of life: a study based on social media in france
ABSTRACT
Background:
Infertility is defined as the inability to achieve a live birth after one year of regular sexual intercourse, affecting 1 in 6 couples in France. The use of ART for infertility issues has been steadily increasing in recent years, with in vitro fertilization being the most common type of ART. Infertility is frequently regarded as a significant life crisis for many individuals, potentially leading to depression, anxiety, social isolation, and sexual dysfunction. Couples experiencing infertility demonstrate a high prevalence of negative emotional responses and decreased life satisfaction as a result of infertility and its treatments. Social media have become key tools for finding and disseminating medical information.
Objective:
This study aims to explore the most discussed topics among patients with infertility and to characterize the impact of infertility and ART on their quality of life by analyzing social media data.
Methods:
This retrospective observational study includes French messages from patients in France discussing their infertility between 2019 and 2022. A Biterm Topic Model (BTM) algorithm capable of automatically identifying the different topics discussed was applied. A quality of life (QoL) algorithm classified the messages according to 5 dimensions: physical, psychological, activity-related, social and financial.
Results:
An analysis was carried out on a corpus of 26,919 messages written by 9,807 patients. The subjects most frequently discussed were the ART procedures, marked by miscarriages (21%), ovulation cycle monitoring (19%), and baby trials in relation to professional life (13%). Concerning the impact on quality of life, patients mainly expressed a physical impact (62%), particularly linked to miscarriages (59%). Psychological impact (52%), including fear and anxiety (61%), was also mentioned. The social dimension of infertility (11%) - notably its effects on married life (67%) - the financial burden of infertility treatments (9%), and the impact on activities (9%) were also addressed.
Conclusions:
Patients facing infertility share their experiences on social media. We observed a strong impact on their quality of life, affecting their physical and psychological health, as well as their social, financial and professional lives. These results underline the importance of taking into account the multiple dimensions of infertility when caring for patients, and highlight the crucial role of social media in supporting and understanding this reality. Clinical Trial: Not applicable
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