Experiences of infertility-related traumatic events and their association with symptoms of Post-Traumatic Stress Disorder (PTSD) and Complex PTSD: results from a mixed-methods online survey.

study questionWhat are experiences of infertility-related traumatic events and are these associated with symptoms of Post-Traumatic Stress Disorder (PTSD) and Complex PTSD (CPTSD)? SUMMARY ANSWER: Infertility-related trauma results from the interplay between a strong unfulfilled desire for children, negative reproductive events and (lack of) associated care, with 9% and 32% of those reporting a traumatic event meeting criteria for PTSD and CPTSD, respectively. WHAT IS KNOWN ALREADY: There is worldwide recognition that fertility treatment is highly stressful, but limited understanding of its potential to trigger traumatic responses like PTSD and CPTSD. PTSD is a mental health disorder characterized by reexperiencing the traumatic event, avoidance of traumatic reminders, and a sense of ongoing threat. CPTSD is diagnosed when trauma also leads to difficulty managing emotions, negative self-concept, and disturbances in relationships. We aimed to document infertility-related traumatic events and how these are associated with symptoms of PTSD and CPTSD. STUDY DESIGN, SIZE, DURATION: Mixed-methods online survey co-produced with and disseminated by the charity Fertility Network UK. Inclusion criteria were being an adult, having suffered from infertility or attended a fertility clinic within the last 5 years, and the ability to read/write English. Eight hundred and sixty-five consented, and 590 (68%, final sample) reported on their most troubling infertility experience. PARTICIPANTS/MATERIALS, SETTING,

methodsMost participants were highly educated white heterosexual women in a relationship. The average age was 37.54% had children, 65% were trying to have (more) children, and 30% were undergoing treatment. Infertility-related trauma experiences and symptoms were assessed with the International Trauma Questionnaire (ITQ, Cloitre et al, 2018, 2021), a validated questionnaire that asks people to describe the experience that troubles them the most and to rate how much 18 trauma-related symptoms bothered them in the past month (Likert scale, from 1-none at all to 5-extremely). The ITQ is used to identify participants meeting criteria for PTSD, CPTSD, or both. We replaced 'experience' with 'infertility experience'. Participants also reported on other traumatic experiences, on 12 negative reproductive events (e.g. failed cycle, treatment, [recurrent] miscarriage, stillbirth, and experiences of care). MAIN RESULTS AND THE ROLE OF CHANCE: Descriptions of infertility troubling experiences yielded 31 categories, 7 themes and 3 meta-themes. Themes showed that suffering and distress are omnipresent in fertility care due to the stressful nature of fertility treatment journeys (e.g. emotional burden, invasive procedures), reproductive loss (e.g. cycle failures, miscarriages), and lack of control (e.g. over access to treatment and its outcomes). This repeated accumulation of distress was compounded by care perceived as dismissive (e.g. insensitive and unsupportive care) and medical trauma (e.g. complications, errors) and had a functional impact at the individual and social level. Fifty-three (9%) participants met criteria for PTSD, 189 (32%) for CPTSD, with 242 (41%) meeting criteria for PTSD or CPTSD. Three-hundred and twenty-eight (56%) participants reported other traumatic events, the 3 most frequent referring to achievement (45%, health and parenthood goals, for example, adoption disruption, recurrent miscarriage), survival (27%, e.g. accidents, traumatic birth) and autonomy (17%, e.g. rape, domestic abuse). The most reported negative reproductive events were unsuccessful cycle (79%), miscarriage (57%), and unsuccessful treatment (52%). Ninety (16%) participants reported that staff discussed trauma with them, 154 (28%) that staff put in place support, and 334 (61%) that the care received made their distress worse. Logistic regression (χ2 = 78.600, df = 11, P < .001) explained 21.7% of variance in meeting criteria for CPTSD. Participants who met criteria for CPTSD were less likely to have children (OR = 0.461 [0.280, 0.759]), more likely to report a strong child desire (OR = 1.202 [1.036, 1.395]), to have experienced their troublesome infertility experience within the last year (ref category within last year, 1 to 5 years OR = 0.557[0.339, 0.917]), having ended treatment without children (OR = 1.630 [1.051, 2.529], having experienced recurrent miscarriage (OR = 2.2028 [1.109, 3.709]), and reporting that care received made trauma worse (OR = 1.788 [1.124, 2.845]). Background factors (e.g. ethnicity, sexual orientation) were not associated with CPTSD and none of the factors measured were associated with PTSD. LIMITATIONS, REASONS FOR CAUTION: The survey may have attracted people self-identifying as having experienced traumatic events, but the sample is overall representative of the typical fertility care population and at risk-groups (e.g. ethnicity, sexual orientation, asylum seekers) were unrepresented. Participants meeting criteria for PTSD and CPTSD diagnoses were identified using a self-reporting questionnaire, but which is validated, sound and internationally used. WIDER IMPLICATIONS OF THE

findingsMany fertility patients have experienced or will experience traumatic events prior to and/or during treatment, and trauma responses can be compounded by poor care and psychosocial contexts. Traumatic events and symptoms must be recognised in clinical practice to prevent (re)traumatising patients, as many will return for treatment and risk re-exposure. STUDY FUNDING/COMPETING INTEREST(S): None. TRIAL REGISTRATION NUMBER: Not applicable.