Quantitative data were collected using the Short Assessment of Patient Satisfaction (SAPS) questionnaire [21] and the Visual Anxiety Scale (VAS-A) [22], both were administered to women attending the EPLSC, and scores were stored securely on an anonymised Excel spreadsheet, along with baseline data collected from Electronic Patient Records. It should be noted that the response rate for SAPS was initially low because women experienced problems accessing the QR code, this was subsequently changed to paper copies which improved response rates.
Qualitative data were collected through semi-structured interviews and consisted of four pre-determined themes based on EPL literature [1][2][6][7][8][19] - physical health, mental health, role of the bereavement midwife and overall service user experience. Five women took part in interviews either online or face-to-face. Due to the sensitive nature of the topic, a bereavement midwife telephoned the women 24 hours after interview to check on psychological wellbeing.
Analysis
Quantitative data was summarised using descriptive statistics and qualitative data was analysed deductively using Framework analysis. The Framework method is generated towards policy and practice orientated findings and commonly used for the thematic analysis of semi-structured interview transcripts [23][24].
Data was analysed from the four pre-defined themes and followed five steps of data management: familiarisation, constructing an initial thematic framework, indexing, and sorting, reviewing data extracts and data summary and display, followed by interpretation [24][25]. The findings were discussed among the SE team at each stage of analysis and there were several iterations of this process before the final categories were developed and agreed by all authors.
Findings
Quantitative
A total of 127 women were invited to the EPLSC between February 2023 and February 2024, with 110 (87%) attending, and 17 (13%) not attending their appointment. Table 1 summarises the characteristics of the women who attended the EPLSC.
Table 1
Characteristics of women who attended the EPLSC
Characteristics of Women who Attended the EPLSC | N = 110 (%) |
Age (years) | |
< 35 | 48 (44%) |
> 35 | 62 (56%) |
Ethnicity | |
Black (British, Caribbean, African) | 7 (6%) |
Asian (British, South, Indian, Other) | 19 (17%) |
White (British, Other) | 48 (44%) |
Mixed (White & Black Caribbean, White & Black African) | 4 (4%) |
Any Other Group (Other/ not Stated) | 32 (29%) |
Previous Pregnancy Losses < 14 weeks | |
0 | 54 (49%) |
1 | 23 (21%) |
2 | 16 (15%) |
3 | 6 (5%) |
4 or more | 11 (10%) |
Type of Loss | |
Miscarriage | 71 (65%) |
Ectopic | 39 (35%) |
Management Miscarriage | |
Surgical | 26 (37%) |
Medical | 12 (17%) |
Expectant | 33 (46%) |
Management Ectopic | |
Surgical | 27 (70%) |
Medical | 6 (15%) |
Expectant | 6 (15%) |
Post EPL Complications | |
> 3 miscarriages | 5 (5%) |
Gynae issues (fibroids, adenomyosis, endometrial polyps) | 40 (36%) |
Cesarean scar niche | 4 (4%) |
Mental health (anxiety, struggling with emotions) | 7 (6%) |
Other (HCG levels high, medical issues) | 8 (7%) |
No complications | 46 (42%) |
The Short Assessment of Patient Satisfaction (SAPS) questionnaire was completed by 56 (51%) of women who attended the EPLSC. Scores ranged between 21–28 demonstrating that women were either satisfied or very satisfied with the care they received in the EPLSC.
The Visual Anxiety Scale (VAS-A) was completed by 84 women (76%) pre and post EPLSC appointment. 76 (69%) of women reported a decrease in anxiety immediately after attending the EPLSC, compared to 8 (7%) who reported no change or a small increase in anxiety.
Table 2 shows the overall VAS-A scores for pre (319.9) and post (151) EPLSC clinic attendance highlighting a 47% decrease in anxiety scores.
Qualitative
Five women who attended the EPLSC consented to interview, two face-to-face, and three via Microsoft Teams. Three women experienced miscarriage between 11–13 weeks of pregnancy, and two-women, ectopic pregnancy.
Three categories pertaining to women’s experiences of attending the EPLSC were identified as fundamentally important-
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Future Fertility
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Emotional Support
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Bereavement Midwife
Physical health & future fertility
Physical health concerns such as recovery following EPL, recurring miscarriage/ectopic pregnancy and future fertility were commonplace in all women interviewed. However, the EPLSC helped to ameliorate some of these worries through discussions on future fertility and being offered an ultrasound scan (USS). All women who attended the EPLSC were offered USS with only 5% declining-
‘I felt very reassured about that [fertility] because before the [EPLSC] appointment I was worried about it taking years to get pregnant again (003)’. [Ectopic].
‘It [ultrasound scan] was very helpful for two reasons a) confirmation of what’s happened, and b) you also get reassurance that your body is bouncing back, things are as they should be (002)’ [Ectopic].
‘This [menstrual] cycle in particular was a lot more delayed than I’m used to which caused me to worry a little bit but having that checked and told that everything looked fine, has helped put my mind at rest (001)’ [Miscarriage].
Some women discussed how a lack of involvement from their GP, receiving conflicting information and not knowing how or when their IVF referral would take place created further anxiety-
‘Receiving contradictory information from the GP on what you need to do before your referral can be sent off-it would really help knowing what the next steps are (002)’ [Ectopic].
Mental health & emotional support
Women described the emotional burden of EPL as particularly difficult. Variations in mood were linked to different timepoints in the EPL journey. Women reported feeling shocked, scared, and anxious at the point of their EPL diagnosis, while feelings of grief, trauma and isolation were reported in the weeks afterwards-
‘I always felt quite matter of fact [about EPL] but I was off work for a month in the end, just because it felt very difficult (003)’ [Ectopic].
One woman reported her feelings of grief partially attributed to the change in her body after salpingectomy-
‘The grief from that [salpingectomy]… I think actually hit later on. Then I started processing everything and not just the pregnancy loss but the change in my body (002)’ [Ectopic].
The EPLSC was important to women as a safe space to discuss emotions and receive acknowledgement for their loss-
‘It was the first time I was asked how I was feeling and the first time that I thought anybody cared about my miscarriage (004)’ [Miscarriage].
‘I think with an early miscarriage, people don’t talk about it very much and no one knew you were pregnant really, because you weren’t showing. So, I don’t think I would have had a clue where to turn [if it wasn’t for EPLSC] (005)’ [Miscarriage].
Bereavement Midwife
The role of the Bereavement Midwife in relation to EPL care was considered important, especially as an easily accessible point of contact, and for future pregnancy concerns-
‘I do feel like in the future, if I had any worries or concerns, I would probably be more likely to get in touch with her [BM], rather than going to the GP or anybody else because I think I’ll be taken a little bit more seriously (001)’ [Miscarriage].
One woman describes how earlier contact with the BM may have been helpful in the first few weeks following EPL-
‘I think I was given her [BM] details at the four-week follow-up rather than at discharge, but that’s the time [immediately after EPL] that most people would be off work recovering and sitting with their thoughts (002)’ [Ectopic].
Improvement suggestions
Improvements proposed by women who were interviewed included more information on fertility care pathways, better links with primary care services, and signposting to appropriate external resources-
‘It would be really helpful knowing what next steps are [fertility] and given more information on the process, because that’s one of the most frustrating things I’ve had to deal with since’ (002) [Ectopic].
Discussing the risks and benefits when signposting women to EPL online resources for support is important because, as one woman explains, some online platforms can be counterproductive, and induce anxiety rather than relieve it-
‘One of the things that was recommended was the Early Pregnancy Trust website, but the forums and the messages that were there may have been counterproductive because, when people are vocal about things and they post things on forums and stuff, it’s almost always worse case scenarios, and experiences rather than support (002)’ [Ectopic].
Providing women with options on how to access the EPLSC, such as offering online or face-to-face appointments, was also felt to be important, depending on the woman’s preference and need-
‘I went to the clinic in person, and I was happy to go in person, but it might be an idea to offer it online if it's not already. Because people experience miscarriages in different ways, and I was fine to go in and I had the support (004)’ [Miscarriage].
Evaluation Outcome
This SE assessed the quality of a newly implemented EPLSC in one London Trust. Evaluative feedback was obtained to determine women’s views on a new service. Key components of the EPLSC based on recommendations from the recent Pregnancy Loss Review (2023) focused on physical health, mental health and support from the bereavement midwife [19].
Characteristics of women who attended the clinic included age, ethnicity, previous pregnancy loss, type of loss and management, and post EPL complications. Around 56% of women who attended the EPLSC were over 35 years old, 49% experienced their first EPL and 56% of women were non-white. This is concurrent with literature highlighting the increased risk of miscarriage in women from ethnic minority groups [7][26][27].
Out of 110 women, 36% (n = 40) were confirmed to a have gynaecological condition in the EPLSC. Confirming gynae pathology during the EPLSC visit can help focus the consultation on pertinent issues that may impact fertility and help to ensure that appropriate referral pathways are initiated. Furthermore, offering women an USS as part of EPL care is a safe, minimally invasive and relatively quick to perform option, which can be useful in confirming issues such as endometriosis, fibroids, and other abnormalities of the uterus [28][29].
Psychological sequalae, such as post-traumatic stress, anxiety and depression, are commonplace following EPL [30][19] with significant variation in emotional care follow-up [19]. Standardising follow-up EPL care may be important for supporting women emotionally and reducing the mental health burden associated with this event. A decrease in self- reported anxiety was found for 85% of women who attended the EPLSC and a further 8% disclosed struggling with their mental health. Identifying difficulties with mental health in women following EPL means that early intervention can be offered to help provide psychological support. However, further evaluation is needed in this area to fully understand the mental health needs of women following-EPL.
The bereavement midwife role was considered important to women especially as an easily accessible point of contact and for future concerns in subsequent pregnancies. However, women raised concerns about the lack of involvement from their GP. Therefore, involving primary care services may be a crucial next step in developing integrated clinical care pathways, especially as, navigating EPL pathways can be confusing for women [19].
Recommendations
Key findings from this SE have highlighted the importance of EPLSC. Recommendations for improvements and factors to consider when an implementing EPLSC include-
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Provide information about EPL care at the time of loss, including EPLSC follow-up and contact details for bereavement midwife.
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Offer a follow-up EPLSC appointment 3–4 weeks after the first negative pregnancy test.
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Offer ultrasound to all women to detect possible complications following post EPL or undiagnosed gynaecological conditions.
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Provide information on future fertility and next steps (if required).
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Develop services to include pathways for mental health referrals/support and GP involvement.
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Signpost to appropriate outside agencies or/and online resources for further information/support.
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Consider the needs of the local population groups to develop culturally sensitive EPL services.
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Offer EPLSC appointments either face-to-face or online, depending on the women’s preference.