The role of Endometriosis Clinical Nurse Specialists in British Society for Gynaecological Endoscopy registered centres: A UK survey of practice

Abstract Aim To identify Endometriosis Nurse Specialists' roles and responsibilities in accredited Endocentres, how these align with the Royal College of Nursing Skills Framework and potential for development to improve patient care. Design Cross‐sectional national survey. Methods Data were collected from an online survey distributed to all 66 Endometriosis Nurse Specialists working across 58 UK‐based Endometriosis registered centres. The response rate was 58% (N = 38). Data from closed questions were analysed using descriptive statistics, and free text responses were collated and analysed thematically. Results Unlike Nurse Specialists in other fields of practice, most Endometriosis Nurse Specialists (N = 33, 87%) had another nursing role. The median hours worked per week as an endometriosis nurse was only 13.5 hr. Most respondents (N = 35, 92%) spent all or most of their allocated hours collecting and inputting endometriosis data, whilst over a third (N = 13, 34%) were not undertaking any autonomous, nurse‐led patient consultations.

by healthcare professionals (Hudelist et al., 2012). This has resulted in an average delay in diagnosis of 5-8.9 years (Culley et al., 2013), during which time the disease is progressing, which may compromise the woman's fertility (Agarwal et al., 2019).
The cause of endometriosis is uncertain, and there is no definitive cure (World Endometriosis Society & the World Endometriosis Research Foundation, 2012). Endometriosis constitutes a significant burden on the quality of life of women and their families, as well as on healthcare systems, as a result of direct and indirect costs (Eisenberg, Weil, Chodick, & Shalev, 2018;Nnoaham et al., 2011), similar to other chronic diseases such as diabetes, Crohn's disease and rheumatoid arthritis (Simoens et al., 2012). The total annual societal burden of endometriosis-associated symptoms for Europe has been estimated to be between 0.8-12.5 billion euros, based on average costs per woman treated in referral centres (Nnoaham et al., 2011;Simoens et al., 2012).
Women with endometriosis have complex needs and require longterm support (NICE, 2017). Nurses play a pivotal role in the delivery of high-quality holistic care to people with long-term conditions (Coulter, Roberts, & Dixon, 2013), yet to date there is a dearth of evidence on the nurse's role in supporting women with endometriosis.

| BACKG ROU N D
In 2013, the NHS England Health Service Commissioning Board, in response to the European guidance on the management of women with endometriosis (ESHRE, 2013), specified that cases of severe endometriosis should be managed by dedicated specialist centres that have been accredited by the British Society for Gynaecological Endoscopy (BSGE). Severe endometriosis is defined as either deeply infiltrating endometriosis or rectovaginal endometriosis, which has an annual incidence of around 5,000 new cases in the UK per year (NHS England, 2013). Deeply infiltrating endometriosis exists where the disease invades at least 5 mm below the tissue surface and can occur in a variety of sites; this includes the bladder, pelvic sidewalls, ovaries, pelvic brim, bowel surface and diaphragm. Rectovaginal endometriosis is endometriosis that involves the rectovaginal septum area (rectovaginal septum; vagina; utero-sacral ligaments; rectum) (NHS England, 2013). Removing the endometriosis in these cases involves complex surgery and can be associated with high rates of serious complications (Byrne et al., 2018). National BSGE criteria (see www.bsge.org.uk) now exist which set out the standards of service and workload required to undertake surgical excision of advanced endometriosis. To retain accreditation as a BSGE Endocentre, all consenting patients who undergo surgery for deep rectovaginal endometriosis that includes dissection of the pararectal space in an Endocentre must have their data entered on to the BSGE national endometriosis database (Byrne et al., 2018). This increasing caseload is driving the establishment of endometriosis centres where such work can be undertaken by specialist multidisciplinary teams (MDT).
The primary aim of endometriosis centres is to provide woman-centred specialist care that helps improve the quality of life for women with severe endometriosis. In the NHS Commissioning Board Specification (NHS England, 2013), clear reference is made to the role of the Clinical Nurse Specialist (CNS) whose role is to liaise directly with women using the specialist service and provide women with support in the management of the condition. This is the first NHS England Health Service commission to stipulate the importance and accreditation, of a specialist centre being dependent on, having a CNS on the MDT. Nurse specialists have been described as highly skilled registered nurses who provide an optimal return on investment in terms of income generation, patient safety and efficiency, cost savings and improvements in patient care and experience (Royal College of Nursing [RCN], 2010).
NHS England (2013) commissioning service specification outlines the key roles of the specialist nurse as: initial outpatient assessment in specialist clinics, information and counselling provision, completing primary Quality of Life questionnaires and undertaking elective outpatient follow-ups at 6 months post-surgery. The CNS is the interface between the patient and the specialist team.
As BSGE specialist centres expand and develop across the UK, the CNS workload is set to evolve. Recognizing the lack of a national standard to define this role, the RCN, in collaboration with Endometriosis UK, a national patient support charity and the BSGE, devised a skills and knowledge framework that would inform and enhance local practice and establish a baseline nursing standard across the UK (Royal College of Nursing, 2015). This framework defined the role and responsibilities of the Endometriosis CNS and provided a career pathway enabling nurses to further develop skills required for this role to ultimately improve care delivery. This CNS role is complex, demanding a range of clinical, management and leadership skills to be developed and an expectation that the CNS works as an autonomous practitioner (see As the Endometriosis CNS role is yet to be evaluated, this survey was designed to identify Endometriosis CNSs' day-to-day roles and responsibilities, investigate how these align with the RCN skills framework and highlight areas requiring further development.

| Aim
The aim of this study was to identify Endometriosis CNS roles and responsibilities in BSGE registered centres, explore how these align with the RCN Skills Framework and establish potential for further development to improve care for women with endometriosis.

| Design
This study employed a cross-sectional descriptive design, using an online survey and adheres to the CHERRIES guidelines for e-surveys.

| Method
The sampling frame was developed from the endometriosis accredited centre information on the BSGE website, which listed the nurse specialist/s employed at each centre. Sixty-six CNSs working in the 58 UK-based BSGE centres (the number of UK-based BSGE centres at the time of commencing this study) listed on the website (50 fully accredited centres and eight provisionally accredited centres) were invited to take part in the survey.

| Data collection
Data were collected from 10th February 2017 to 31st March 2017.
All CNSs listed on the BSGE website were sent an e-mail from the BSGE Head Office containing a letter from the research team explaining the study and a link to the online survey, hosted by Qualtrics (www.qualt rics.com), a secure online survey provider (see Appendix S1).
Participants were able to partially complete the survey and return to it at any time whilst it remained available. Due to an initially slow response rate, the survey timeframe was extended from 4 weeks to seven and reminder e-mails were sent from the BSGE Head Office to all CNSs at 4 weeks and just before the survey closed. consented to the use of the data as specified. Contact information for the study team was also provided to answer any queries from potential participants. Participation was anonymous to protect data confidentiality.

| Analysis
Data were exported into SPSS (version 22) for analysis. Only submitted questionnaires were included in the final data set. Missing responses were coded and included in the analysis, and no categories were collapsed. Data from the closed questions were analysed using descriptive statistics, and free text responses were collated and analysed thematically and expressed as frequencies and proportions.
Median values are reported for non-normally distributed data. All data were analysed anonymously.

| Rigour
The survey was designed to capture demographic information on endometriosis CNSs (e.g. duration and hours undertaking this role, development) and data collection and management. Further questions were designed to identify aspects of the role that CNSs felt were working well and those that remained challenging, CNSs' views on further development of their role and the skills they identified as most important for their on-going professional development.
A range of response options was used to reflect the different questions, including a 0-5-point Likert scale, yes/no responses and free text boxes. To establish content validity, a draft of the survey was reviewed by the BSGE, then piloted with a gynaecology nurse with previous clinical endometriosis experience. This process verified the acceptability of content, clarity of items, survey length and question format to nurses. Minor revisions were made to three questions for clarity prior to distribution. The final survey questionnaire was approved by BSGE officers prior to dissemination.

| RE SULTS
Of the initial 66 endometriosis CNSs who were invited to take part in the survey, 38 completed the survey, producing a response rate of 58%. Some questions allowed for more than one response and not all respondents answered all questions, consequently data may not equate to the number of respondents.

| Demographic characteristics
The respondents had an average of 21.85 years' post-registration clinical experience (CI 18.98-24.72, range 4.5-35 years) and had worked specifically in women's healthcare for an average of 15.88 years (CI 13.18-18.57, range 1.25-30 years). Of note is that five respondents had not undertaken any women's health-related courses or training. The RCN Skills Framework highlights that CNSs should ideally be working towards Masters level thinking and problem-solving, yet only 11 (29%) of the respondents were educated to Master's level.
When respondents were asked how they came to be an Endometriosis CNS, 14 had applied for this specific post, six respondents had taken on this role as an internal secondment; in two cases, the endometriosis CNS job was advertised as a joint post with their current role, and in one case, the respondent had been personally asked to apply for the role. However, of note is that in 15 cases (39%), the endometriosis CNS role had just been added to a nurse's current gynaecology-related role rather than them having applied for the specific post.
Most participants (N = 33, 87%) had at least one other nursing role alongside their Endometriosis CNS role and of these participants, 27 (82%) had one other role, four participants had two other nursing roles and two participants had three other nursing roles. These other roles related to the following: gynaecology assessment/Advanced Nurse Practitioner (N = 9); gynaecology clinic/ ward management (N = 10); surgical practitioner/theatres (N = 3); hysteroscopy/colposcopy practitioners (N = 3); fertility care (N = 2); gynaecology oncology (N = 2); early pregnancy care (N = 2); ultrasonography (N = 2). The hours worked in these other roles ranged from 4 hr-37.5 hr indicating that some CNSs were working more than their contracted weekly hours to keep up with their caseload.
There was a wide variation in the hours allocated to undertake the endometriosis CNS role, ranging from just 5 hr per week to the maximum full-time 37.5 hr per week. The median hours worked per week as an Endometriosis CNS was 13.5 hr. On a positive note, 26 (68%) of the respondents did report that their endometriosis CNS hours were protected; this may relate to the required 12 complex cases each gynaecological surgeon must perform annually to maintain a centre's accreditation (British Society for Gynaecological Endoscopy, 2017).

| Clinical practice skills
Participants were asked about the clinical skills they had gained during their career and whether these skills were being used within their Endometriosis CNS role, as outlined in the RCN Skills Framework. Table 1 indicates the clinical practice skills of those who answered these questions and responses varied across items. Some respondents with specific skills prior to becoming an Endometriosis CNS appeared not to be using these skills within the CNS role, which may potentially lead to them becoming de-skilled in technical aspects of clinical practice. The biggest decrease in skill use relates to undertaking ultrasound scanning and working to patient group directions (PGDs). In contrast, there was a reported increase in the use of some skills, such as educating women on medical and complementary therapy options.

| Service provision, pathway management and leadership
A key aspect of the RCN skills framework related to the CNS as an autonomous practitioner, who undertakes consultations independently whilst also working across and within multiple specialist teams. However, as outlined in Table 2, only eight (32%) respondents delivered nurse-led face-to-face consultations, undertaking a median of five consultations per week, with a range of two to 12 consultations. Only a third of the respondents (N = 8, 33%) were undertaking nurse-led telephone consultations, six CNSs (24%) were dealing with e-mail enquiries, whilst 11 (58%) were managing more informal patient telephone enquiries. The median number of consultations ranged from 4-5 per week across all the consultation/ enquiry types. In addition, respondents identified a lack of opportunity to undertake or develop their leadership skills to support an autonomous practitioner role. Only three (8%) respondents reported spending their CNS allocated hours using and applying their leadership skills.

| Education, training and profile development
The remit of the CNS also includes educational and profile development components. However, the findings from this study show that most CNSs were not involved in any endometriosis educational provision for healthcare professionals or patients and their partners.
Only 15 (39%) CNSs were providing education for healthcare providers in secondary care, whilst only 8 (21%) were providing education for healthcare providers in primary care settings. Education sessions for women with endometriosis were provided by 16 (42%) CNSs, but only 10 (26%) offered any educational sessions to women's partners.
In relation to profile development, only 11 (29%) respondents were involved with their local endometriosis support group and only three respondents had been involved with any independent research within their Endometriosis CNS role. With respect to the CNSs' continuous professional development, most respondents (N = 27, 71%) had attended a BSGE annual meeting within the previous 2 years, whilst 23 (61%) reported not having any access to supervision, mentoring or buddying support for their role.

| Data collection and management
The CNS allocated hours were not always aligned to patient con-

| Aspects of the role that are working well and those remaining challenging
All CNSs were asked to comment on the aspects of the role they felt were working well and those they felt remained challenging.
Qualitative comments from the respondents were analysed thematically and grouped into distinct areas.
The key aspect of the role that respondents perceived to be working well related to their direct contact with patients and continuity of patient care (N = 21), with 35 respondents (N = 92%) believing that their CNS role enabled them to be a patient advocate.
Other positive aspects of the role were reported to be the multidis-

| Suggestions for role development
All CNSs were asked to comment on how they would like to further develop their role. Thirty-one CNSs responded with suggestions (see Table 3). The most frequent suggestions related to developing the role as an autonomous practitioner, by undertaking more nurseled consultations and/ or clinics and being involved in more educational and patient advocacy-related activities, both core elements of a CNS role.

| Strengths and limitations
This is the first study to explore how the commissioned

| CON CLUS ION
The Endometriosis CNS role has been driven by commissioning services, identifying a gap in service provision, which appears to follow a medical perspective rather than a holistic nursing approach to person-centred care. This emphasis has led to a specific angled focus on how this role has developed, rather than being guided by patients' needs. As the number of accredited BSGE Endocentres and thus the number of Endometriosis nurses increases, there is an urgent need to review the CNS allocated hours to create an effective uniformed provision across BSGE registered centres. We conclude that there is a real opportunity for CNSs to take ownership for this role development enabling them to more effectively respond and adapt to patients' emerging needs. In addition, further research is needed to assess the cost benefits of Endometriosis nurse specialist-led activities, including nurseled clinics, to inform local workforce and service improvement strategies.

ACK N OWLED G EM ENTS
We would like to thank the BSGE and Endometriosis UK for supporting this study, and the Endometriosis CNSs who completed the survey, for sharing their experiences. We would also like to thank the [De Montfort University] Centre for Reproduction Writing for Publication Group, for their constructive feedback on earlier drafts of the manuscript, and acknowledge the assistance of Brigita Skopaite with the data collection.

CO N FLI C T O F I NTE R E S T
None.

AUTH O R S CO NTR I B UTI O N
WN, HM, DH and CL: Conception and planning of the study and contribution to the writing of the manuscript. WN, HM and DH: Survey questionnaire, collection of data and analyses.