Exploring the delays to diagnosis of endometriosis in the United Kingdom: a qualitative study

In the United Kingdom, the average time to diagnosis of endometriosis, a common gynaecological condition, is 7.5 years. The aim of this qualitative doctoral study was to explore, in two phases, the reasons for the delay to diagnosis of endometriosis from the perspectives of both patients and healthcare professionals. In phase 1, fifteen women with confirmed endometriosis participated in individual, semi-structured interviews, and a conceptual description was generated using constructivist grounded theory. Further analysis resulted in a novel, substantive theory; this describes how the main concern of women with undiagnosed endometriosis is coping with a fracturing life, which they address through a process of making sense. The way in which a woman seeks to make sense depends upon the context of refusal, disbelief or belief arising from her interactions with others. Across each context, the grounded theory identifies how women’s individual experiences influence health-seeking behaviours and the subsequent delays to diagnosis. The findings from phase 1 informed the design of phase 2, where focus groups with fifteen healthcare professionals were conducted to explore delays to diagnosis of endometriosis. The data were analysed using reflexive thematic analysis. Three main themes evolved: (1) endometriosis is peppered with discrimination, (2) invisible women and the invisible line for referral, and (3) visibility in a context of belief: rendering the woman visible. A key finding that connected both phases was the way in which clinicians rendered women invisible and how women recognised and responded to this. This study provides a unique understanding of the health-seeking behaviours of women with undiagnosed endometriosis and develops a multivariate theory to explain the delays to diagnosis. This original contribution can be used to alleviate structural discrimination and encourage collaboration within and among professional bodies and patient groups to facilitate referral and diagnosis

Women’s perceptions of COVID-19 and their healthcare experiences: a qualitative thematic analysis of a national survey of pregnant women in the United Kingdom

Background The aim of this national survey was to explore pregnant women’s perceptions of COVID-19 and their healthcare experiences. Methods Through patient and public involvement, a questionnaire was developed and advertised via the BBC website, Twitter and other online media during May 2020. The findings were analysed by qualitative thematic analysis. Women who are currently pregnant, or who have delivered during the COVID-19 pandemic were invited to partake in a national online survey. Results One thousand four hundred fifty-one participants replied to the online questionnaire. Participants provided significant insight into the perceived barriers to seeking healthcare during this pandemic. These include ‘not wanting to bother anyone’, ‘lack of wider support from allied healthcare workers’ and the influence of the media. Other concerns included the use of virtual clinics antenatally and their acceptability to patients, the presence of birthing partners, and the way in which information is communicated about rapidly changing and evolving services. The influence of the media has also had a significant impact on the way women perceive hospital care in light of COVID-19 and for some, this has shaped whether they would seek help. Conclusions This is the first ever reported study in the United Kingdom to explore pregnant women’s perceptions of COVID-19 and their subsequent healthcare experiences. It has also provided insight into perceived barriers into seeking care as well as maternal concerns antenatally, intrapartum and postpartum

A Study to Explore the Impact of Endometriosis in the United Kingdom: A Qualitative Content Analysis

Objective To gain insight into the areas that impact women with endometriosis. Design A qualitative content analysis of an online survey. Setting Online questionnaire via Endometriosis UK. Population Women diagnosed with endometriosis of any age range. Methods Free-text online questionnaire through Endometriosis UK completed by women. Results were analysed using NVivo version 9, qualitative analysis software. The software creates links between common words (codes), and these links allow data to be placed in nodes (called themes) which are then developed into categories. Content analysis was used to understand this data.  Main outcome measures  Impact of endometriosis on women’s lives. Results In total, 1872 questionnaires were returned but not everyone was able to identify ten separate features that affected them. As such, 1872 women provided at least one area that affected them, 1800 provided two areas, 1770 provided three areas and 1600 provided four areas. The results show that the main areas of concern for these women were pain (53%), heavy menstrual bleeding (11%), low mood (8%) and the perceived lack of understanding displayed by other people (7%). Other important factors were fertility concerns, impact on employment, problems with the medical team and uncertainty. These then impacted on their daily life whereby some women felt “guilty” for not ‘being a normal mother’. A key term that resonated was that endometriosis is an “invisible disease”. Conclusion This analysis provides us with insight into the complex psycho-social factors that interact with bio-physical symptoms. Further research is required in sub-population groups such as teenagers and ethnic minority women to explore any differences in impact and how care can be guided accordingly

Systematic review of patient-specific pre-operative predictors of pain improvement to endometriosis surgery

BACKGROUND: Up to 28% of endometriosis patients do not get pain relief from therapeutic laparoscopy but this subgroup is not defined. OBJECTIVES: To identify any prognostic patient-specific factors (such as but not limited to patients’ type or location of endometriosis, sociodemographics and lifestyle) associated with a clinically meaningful reduction in post-surgical pain response to operative laparoscopic surgery for endometriosis. SEARCH STRATEGY: PubMed, Cochrane and Embase databases were searched from inception to 19 May 2020 without language restrictions. Backward and forward citation tracking was used. SELECTION CRITERIA, DATA COLLECTION AND ANALYSIS: Cohort studies reporting prognostic factors, along with scores for domains of pain associated with endometriosis before and after surgery, were included. Studies that compared surgeries, or laboratory tests, or outcomes without stratification were excluded. Results were synthesised but variation in study designs and inconsistency of outcome reporting precluded us from doing a meta-analysis. MAIN RESULTS: Five studies were included. Quality assessment using the Newcastle–Ottawa scale graded three studies as high, one as moderate and one as having a low risk of bias. Four of five included studies separately reported that a relationship exists between more severe endometriosis and stronger pain relief from laparoscopic surgery. CONCLUSION: Currently, there are few studies of appropriate quality to answer the research question. We recommend future studies report core outcome sets to enable meta-analysis. LAY SUMMARY: Endometriosis is a painful condition caused by displaced cells from the lining of the womb, causing inflammation and scarring inside the body. It affects 6–10% of women and there is no permanent cure. Medical and laparoscopic surgical treatments are available, but about 28% of patients do not get the hoped-for pain relief after surgery. Currently, there is no way of predicting who gets better and who does not. We systematically searched the world literature to establish who may get better, in order to improve counselling when women choose treatment options. We identified five studies of variable quality showing: More complex disease (in specialist hands) responds better to surgery than less, but more studies needed

Provision of obstetrics and gynaecology services during the COVID-19 pandemic:a survey of junior doctors in the UK National Health Service

Objective: The COVID-19 pandemic is disrupting health services worldwide. We aimed to evaluate the provision of obstetrics and gynaecology services in the UK during the acute-phase of the COVID-19 pandemic. Design: Interview-based national survey. Setting: Women’s healthcare units in the National Health Service. Population: Junior doctors in obstetrics and gynaecology. Methods: Participants were interviewed by members of the UKARCOG trainees’ collaborative between 28th March and 7th of April 2020. We used a quantitative analysis for closed-ended questions and a thematic framework analysis for open comments. Results: We received responses from 148/155 units (95%), majority of the participants were in years 3-7 of training (121/148, 82%). Most completed specific training drills for managing obstetric and gynaecological emergencies in women with COVID-19 (89/148, 60.1%) and two-persons donning and doffing of Personal Protective Equipment (PPE) (96/148, 64.9%). The majority of surveyed units implemented COVID-19 specific protocols (130/148, 87.8%), offered adequate PPE (135/148, 91.2%) and operated dedicated COVID-19 emergency theatres (105/148, 70.8%). Most units reduced face-to-face antenatal clinics (117/148, 79.1%), and suspended elective gynaecology services (131/148, 88.5%). The two-week referral pathway for oncology gynaecology was not affected in half of the units (76/148, 51.4%), while half reported a planned reduction in oncology operating (82/148, 55.4%). Conclusion: The provision of obstetrics and gynaecology services in the UK during the acute phase of the COVID-19 pandemic seems to be in line with current guidelines, but strategic planning is needed to restore routine gynaecology services and ensure safe access to maternity care on the longterm

Utilisation of an operative difficulty grading scale for laparoscopic cholecystectomy

Background A reliable system for grading operative difficulty of laparoscopic cholecystectomy would standardise description of findings and reporting of outcomes. The aim of this study was to validate a difficulty grading system (Nassar scale), testing its applicability and consistency in two large prospective datasets. Methods Patient and disease-related variables and 30-day outcomes were identified in two prospective cholecystectomy databases: the multi-centre prospective cohort of 8820 patients from the recent CholeS Study and the single-surgeon series containing 4089 patients. Operative data and patient outcomes were correlated with Nassar operative difficultly scale, using Kendall’s tau for dichotomous variables, or Jonckheere–Terpstra tests for continuous variables. A ROC curve analysis was performed, to quantify the predictive accuracy of the scale for each outcome, with continuous outcomes dichotomised, prior to analysis. Results A higher operative difficulty grade was consistently associated with worse outcomes for the patients in both the reference and CholeS cohorts. The median length of stay increased from 0 to 4 days, and the 30-day complication rate from 7.6 to 24.4% as the difficulty grade increased from 1 to 4/5 (both p < 0.001). In the CholeS cohort, a higher difficulty grade was found to be most strongly associated with conversion to open and 30-day mortality (AUROC = 0.903, 0.822, respectively). On multivariable analysis, the Nassar operative difficultly scale was found to be a significant independent predictor of operative duration, conversion to open surgery, 30-day complications and 30-day reintervention (all p < 0.001). Conclusion We have shown that an operative difficulty scale can standardise the description of operative findings by multiple grades of surgeons to facilitate audit, training assessment and research. It provides a tool for reporting operative findings, disease severity and technical difficulty and can be utilised in future research to reliably compare outcomes according to case mix and intra-operative difficulty

Population‐based cohort study of outcomes following cholecystectomy for benign gallbladder diseases

Background The aim was to describe the management of benign gallbladder disease and identify characteristics associated with all‐cause 30‐day readmissions and complications in a prospective population‐based cohort. Methods Data were collected on consecutive patients undergoing cholecystectomy in acute UK and Irish hospitals between 1 March and 1 May 2014. Potential explanatory variables influencing all‐cause 30‐day readmissions and complications were analysed by means of multilevel, multivariable logistic regression modelling using a two‐level hierarchical structure with patients (level 1) nested within hospitals (level 2). Results Data were collected on 8909 patients undergoing cholecystectomy from 167 hospitals. Some 1451 cholecystectomies (16·3 per cent) were performed as an emergency, 4165 (46·8 per cent) as elective operations, and 3293 patients (37·0 per cent) had had at least one previous emergency admission, but had surgery on a delayed basis. The readmission and complication rates at 30 days were 7·1 per cent (633 of 8909) and 10·8 per cent (962 of 8909) respectively. Both readmissions and complications were independently associated with increasing ASA fitness grade, duration of surgery, and increasing numbers of emergency admissions with gallbladder disease before cholecystectomy. No identifiable hospital characteristics were linked to readmissions and complications. Conclusion Readmissions and complications following cholecystectomy are common and associated with patient and disease characteristics

The Cholecystectomy As A Day Case (CAAD) Score: A Validated Score of Preoperative Predictors of Successful Day-Case Cholecystectomy Using the CholeS Data Set

Background Day-case surgery is associated with significant patient and cost benefits. However, only 43% of cholecystectomy patients are discharged home the same day. One hypothesis is day-case cholecystectomy rates, defined as patients discharged the same day as their operation, may be improved by better assessment of patients using standard preoperative variables. Methods Data were extracted from a prospectively collected data set of cholecystectomy patients from 166 UK and Irish hospitals (CholeS). Cholecystectomies performed as elective procedures were divided into main (75%) and validation (25%) data sets. Preoperative predictors were identified, and a risk score of failed day case was devised using multivariate logistic regression. Receiver operating curve analysis was used to validate the score in the validation data set. Results Of the 7426 elective cholecystectomies performed, 49% of these were discharged home the same day. Same-day discharge following cholecystectomy was less likely with older patients (OR 0.18, 95% CI 0.15–0.23), higher ASA scores (OR 0.19, 95% CI 0.15–0.23), complicated cholelithiasis (OR 0.38, 95% CI 0.31 to 0.48), male gender (OR 0.66, 95% CI 0.58–0.74), previous acute gallstone-related admissions (OR 0.54, 95% CI 0.48–0.60) and preoperative endoscopic intervention (OR 0.40, 95% CI 0.34–0.47). The CAAD score was developed using these variables. When applied to the validation subgroup, a CAAD score of ≤5 was associated with 80.8% successful day-case cholecystectomy compared with 19.2% associated with a CAAD score >5 (p < 0.001). Conclusions The CAAD score which utilises data readily available from clinic letters and electronic sources can predict same-day discharges following cholecystectomy

A grounded theory exploration of the delays to diagnosis of endometriosis

Objective: The average time to diagnosis of endometriosis is 8 years in the United Kingdom. The objective of this doctoral qualitative study was to explore, in two phases, the reasons for the delay to diagnosis of endometriosis from both patient and healthcare professional perspectives. Design: A qualitative study involving the constructivist grounded theory method and reflexive thematic analysis. Method: Firstly, fifteen women with endometriosis underwent individual semi-structured interviews and a substantive theory to explain delay to diagnosis was generated using the constructivist grounded theory approach. Secondly, the findings from phase one informed the design of the second phase of the study where three focus groups were conducted with fifteen healthcare professionals and findings analysed using reflexive thematic analysis. Results: Initially a conceptual description of the delays to diagnosis was generated. Further analysis resulted in a novel, substantive theory; this describes how the main concern of women with undiagnosed endometriosis is coping with a fracturing life (core category), which women address through a process of ‘making sense’. The way in which a woman seeks to make sense depends upon the context of ‘refusal’, ‘disbelief’ or ‘belief’ arising from her interactions with others. Across these contexts, there is variation in the way (i) each woman perceives the credibility of the evidence of her symptoms, (ii) the way in which other people behave towards her and (iii) the power she vests in the ‘other’. Together, these factors impact on the way women seek the meaning of their symptoms and ultimately influence the time taken to diagnose endometriosis. Healthcare professionals discussed three themes: (1) endometriosis is peppered with discrimination, (2) invisible women and the invisible line for referral, and (3) visibility in a context of belief. A key finding that connected both phases of the study was the way in which clinicians rendered women invisible and how women recognised and responded to this. Conclusion: This is the first grounded theory study in the United Kingdom to offer insight into the delays to diagnosis of endometriosis. The study provides a unique understanding of the health-seeking behaviours of women with undiagnosed endometriosis as well as the ways in which clinicians render the women invisible during a consultation. A multivariate theory has been developed to explain the delays to diagnosis. This original contribution can be used to alleviate structural discrimination and encourage collaboration within and among professional bodies and patient groups to facilitate referral and diagnosis

Self help materials for smoking relapse prevention: A process evaluation of the SHARPISH randomised controlled trial

Background: UK Stop Smoking Services are effective at assisting smokers to quit. However, smoking relapse rates are high, representing a significant public health problem. No effective interventions are currently available. This embedded qualitative process evaluation, within a randomized controlled trial of a self-help smoking relapse prevention intervention, aimed to understand patient perspectives in explaining the null trial finding, and to make recommendations for intervention development. Methods: The intervention was a British version of the ‘Forever Free’ self-help booklets (SHARPISH—ISRCTN 36980856). The qualitative evaluation purposefully sampled 43 interview participants, triangulated with the views of 10 participants and 12 health professionals in focus groups. Data were thematically analysed. Results: Analysis revealed important variation in individual engagement with the self-help booklets. Variation was interpreted by the meta-themes of ‘motivation for cessation’, and ‘positioning on information provision’, interacting with the theme of ‘mechanisms for information provision’. Conclusions: Targeting self-help information towards those most motivated to engage may be beneficial, considering the social and cultural realities of individual's lives. Individual preferences for the mechanisms of information delivery should be appraised when designing future interventions. Long-term personalized follow-up may be a simple step in improving smoking relapse rates