Factors that shape recurrent miscarriage care experiences: findings from a national survey

A cross-sectional study using an anonymous web-based survey was conducted to examine the experience of people who have interacted with the health services following RM.

Women and men over 18 who experienced two or more consecutive first-trimester miscarriages in the preceding ten years (2010–2021), and who received care for RM in Ireland were invited to participate. Two or more consecutive first-trimester miscarriages were selected based on growing consensus and updated guidelines [5, 29], and the period of ten years was chosen to reflect the research and investment in miscarriage services in Ireland following the Miscarriage Misdiagnosis Review in 2010 [30‐32]. The terms women and men are used throughout the paper, but participants were asked to identify themselves as ‘Mother/I carried the pregnancy’ or ‘Father/partner’ in the survey.

We used self-selection or voluntary response sampling, a type of non-probability sampling, where individuals volunteer themselves, i.e. responded to an open call for participants. This is a common approach for samples that need to meet specific criteria. We did this to develop an understanding of a smaller, under researched population in Ireland. We distributed the survey through existing professional, collegial and support networks, and the Clinical Midwife Specialists in Bereavement and Loss in each of the 19 maternity units/hospitals across Ireland from September to November 2021. The link to the survey was shared through email distribution lists, websites, newsletters, and social media, including those of the research team and the INFANT Research Centre, the Pregnancy Loss Research Group, and miscarriage/ pregnancy loss organisations. Recruitment materials, including posters/flyers and business cards, were tailored to women and men by including photos and quotes from those with lived experience of RM, which were also distributed nationally throughout pregnancy loss clinics and early pregnancy assessment units. Women and men with recurrent miscarriage in line with the eligibility criteria were invited to take part in the study through this open call for participants. Information about the study was presented to potential participants when they clicked the survey link and they then provided informed consent prior to completing the survey.

In a questionnaire consisting of 10 sections, 165 questions were purposefully designed using relevant literature [1, 19, 33, 34] and existing care experience surveys [5, 12, 27, 35] related to maternity care and/or pregnancy loss. Research findings from the RE:CURRENT Project [2, 36] informed the questionnaire, specifically qualitative research with healthcare professionals and women and men who had experienced RM [37] to tailor care experience questions to this cohort and ensure that relevant questions were being asked. The final questionnaire (see Additional File 1) was developed by the Research Team in consultation with key stakeholders, including parent advocates from the RE:CURRENT Research Advisory Group.

The structured questionnaire consisted of questions across several areas, including sociodemographic information, pregnancy and pregnancy loss history, investigations, receiving results and treatment for RM, follow-up care for subsequent pregnancies, the impact of RM, information, and support provision. The RE:CURRENT Project research team, and members of the RE:CURRENT Research Advisory Group, and Pregnancy Loss Research Group at Cork University Maternity Hospital, piloted the survey. After this pilot, changes were made to the wording, layout, and the selection of required responses within the online survey platform. The survey was formatted and managed using Qualtrics [38] with the advice and support of the RE:CURRENT Research Advisory Group.

The data were checked by CF to ensure all participants met the inclusion criteria. Analysis was carried out using Stata V.13 [39]. Descriptive analyses were carried out for all variables through the RM care pathway. Associations between sample characteristics and care experience were explored using χ2 test. Unadjusted multinomial logistic regression was conducted to examine the association between patient-centred care items throughout the RM care pathway and overall RM care experience rating. Adjusted multinomial logistic regression analysis was not performed due to varying sample sizes through the RM pathway.

A total of 213 participants completed the survey. However, 74 participants were not eligible for this analysis as they did not experience a consecutive miscarriage (n = 63) or did not receive care between 2011 and 2021 (n = 11). Of the eligible participants (n = 139), 97% were women (n = 135). Due to the small number of men (n = 4) (see Additional File 2), this section only presents results for women who participated. Of the women participants, 79% were aged 35–44 years (n = 106), 85% were married (n = 114), 39% had postgraduate degrees (n = 53) with 80% having private health insurance (n = 108). Furthermore, 57% had experienced two consecutive miscarriages (n = 77), 75% had received care in the last five years (2016–2021), and 24% had been diagnosed with infertility (n = 32) (Table 2).

Rating of overall RM care experience was characterised as follows: poor (44%, n = 60), satisfactory (39%, n = 52) and good (17%, n = 23). Based on χ2 test, overall RM care experience rating was not associated with participant characteristics (Table S3.1, Additional File 3).

Participants' experiences of the various stages of the RM care pathway are depicted in Fig. 1 (Also, see supporting data, Tables S3.2-S3.7, Additional File 3). Of the participants (n = 135), 66% had discussed RM with a healthcare professional, 53% had investigations for RM (n = 71), 62% requested these investigations (n = 44), 35% waited between 3–4 months for investigations (n = 25) to take place, and 49% felt their healthcare professional did not do everything to investigate their RM (n = 35).

Of the participants who had investigations (n = 71), 86% received their results (n = 61), 28% waited 3–4 months for results (n = 17), 51% felt the wait time was too long, 51% received results from a private consultant (n = 31), and 64% did not get answers about causes of their RM (n = 39). Furthermore, 52% had a treatment plan in place (n = 70), of which 44% received their treatment plan from a private consultant (n = 31), and 42% did not feel their healthcare professional did everything to treat their RM (n = 23).

Finally, 72% experienced another pregnancy (n = 97), of which 78% were offered early reassurance scans (n = 76), and 39% felt their healthcare professional 'to some extent' did everything to support their subsequent pregnancy (n = 38). When thinking about their RM care, 64% said it was worse than expected (n = 87), with 60% stating that healthcare professionals did not work well together during their care (n = 84).

In the unadjusted multinomial logistic regression, some patient-centred care items for investigations, receiving results, treatment plans and subsequent pregnancy were linked to either satisfactory or good RM care experience (see Additional File 4).

For participants who received their RM investigation results (n = 61), those who received information about their results (RRR 10.21 [95% CI: 1.15–90.53]) had a healthcare professional to talk to about their worries/fears (RRR 18.70 [95% CI: 2.09–167.27]) and whose partner could ask questions about their investigation results (RRR 5.88 [95% CI: 1.30–26.51]) were more likely to report a good overall RM care experience.

Our findings add to the extant knowledge base on the care experiences of people who experience pregnancy loss, addressing an important gap in the literature specifically regarding RM. While our study was conducted in Ireland, our findings regarding overall care experiences are similar to those observed in other international studies. This study employed a strict inclusion criterion that included women/men who had experienced two or more first-trimester miscarriages, and as the guidelines and definitions for RM vary, some women/men were excluded from this analysis. As ten years were chosen to reflect the research and investment in miscarriage services in Ireland since 2010 following the Miscarriage Misdiagnosis Review [30], recall bias may be present. Although less is known about paternal recall, previous studies on reproductive events have demonstrated that maternal recall has acceptably high reliability and is little affected by time from the event [54]. Many participants who took part in this study were of White Irish ethnicity. A more diverse sample in terms of ethnicity and socioeconomic background may have provided broader insight into the experience of RM care. As noted earlier, further work is also needed to engage men in this type of research and to elicit their views and experiences. As the survey was self-selecting, findings cannot be generalised to the Irish population. Most participants were older, of a higher socioeconomic status and well-educated, with private health insurance. Data on miscarriage is not routinely recorded in Ireland; however, cohort studies show that women with recurrent miscarriage tend to be older (aged ≥ 35 years) [55, 56]; age is a key demographic risk factor for miscarriage [1]. Our use of voluntary response sampling introduces some biases in the sample as some people are inherently more likely to volunteer than others, and our sample is not representative of the population under study. For example, negative bias can influence motivation to complete a task, women with negative experiences may be over-represented [57, 58]. Several variables were re-categorised for the analysis, easy interpretation, and presentation of results [59]. Each stage of the RM pathway had different sample sizes resulting in wide confidence intervals indicating the data does not provide a precise representation. While using statistical inference is not recommended in non-probability sampling, in this instance the confidence interval/p-value confronts the sample with a certain probability model, which enabled this analysis to highlight patient centred care items that predict/ influence overall care experience as data is limited in Ireland for RM. Therefore, results should be interpreted with caution.

Nonetheless, the care experience survey was a valuable tool for assessing RM care delivery processes and including women's experiences in quality improvement research [33]. Addressing an identified research gap, our results highlight patient centred care items that influence overall care experience ratings, and provide a starting point for future work. Building on previous surveys and input from the RE:CURRENT Research Advisory Group in the development, distribution and analysis added substantial strength to this study and has resulted in a tool that could be used/adapted in future research.