Collegian 28 (2021) 464–468

Contents lists available at ScienceDirect

Collegian
journal homepage: www.elsevier.com/locate/coll

Protocol

Nursing care for patients with endometriosis and/or adenomyosis:

A mixed methods systematic review protocol
Erica O’Donoghue a , Suzanne Kapp a , Tracy Murphy b , Snezana Kusljic a,c,∗
a
Department of Nursing, School of Health Sciences, The University of Melbourne, Melbourne, Australia
b
The Department of General Practice, Melbourne Medical School, The University of Melbourne, Melbourne, Australia
c
Hormones in Psychiatry Laboratory, The Florey Institute of Neuroscience and Mental Health, Melbourne, Australia

a r t i c l e i n f o a b s t r a c t

Article history: Background: Endometriosis and adenomyosis are benign gynaecological conditions that can cause pain
Received 2 June 2020 disorders, menstrual abnormalities, and fertility issues. Due to the variances of clinical presentations, a
Received in revised form 13 October 2020 patient-centred care approach is needed to address the complex healthcare needs of individuals with
Accepted 22 October 2020
endometriosis and/or adenomyosis. This approach can be achieved by nurses both independently, such
as in nurse-led clinics, and in collaboration with other healthcare professionals.
Keywords:
Aim: The review aims to examine the nurse’s role in the delivery of care for patients with endometriosis
Adenomyosis
and/or adenomyosis. An overall research question focuses on: ‘How do nurses deliver care for patients
Endometriosis
Nurses
with endometriosis and/or adenomyosis?’
Nursing care Methods: A mixed methods systematic review will be undertaken using a convergent segregated design
Patient care management approach guided by the relevant Joanna Briggs Institute (JBI) methodology. A three-step search strat-
Quality of health care egy will be applied across six databases to locate qualitative, quantitative, and mixed method studies
which meet the inclusion criteria. At least two independent reviewers will be involved in screening, crit-
ical appraisal, and data extraction of included studies. Results will be tabulated and accompanied by a
narrative summary.
Conclusion: Examination of the review topic and answering the research question will result in a synthesis
of evidence of the nurse’s role in the delivery of care for patients with endometriosis and/or adeno-
myosis. Recommendations may inform in the planning and development of the nurses’ role which has
the potential to improve the quality of healthcare for patients with endometriosis and/or adenomyosis.
© 2021 Published by Elsevier Ltd on behalf of Australian College of Nursing Ltd.

Summary of Relevance
Problem or Issue
Endometriosis and adenomyosis are benign gynaecological conditions with complex healthcare needs causing pain disorders, men-
strual abnormalities, and fertility issues.
What is Already Known
A patient-centred care approach is needed for individuals with endometriosis and/or adenomyosis. This approach can be achieved by
nurses both independently such as through nurse-led clinics and in collaboration with other healthcare professionals.
What this Paper Adds
The review will provide a synthesis of evidence regarding the nursing contributions in the delivery of care for patients with endometriosis
and/or adenomyosis. The review outcomes may provide recommendations regarding how nurses can improve the quality of healthcare
for patients with endometriosis and/or adenomyosis.

∗ Corresponding author at: The University of Melbourne, Department of Nursing, Level 7, Alan Gilbert Building, 161 Barry Street, Carlton, Melbourne, VIC 3053, Australia.
Tel.: +61 383449428
E-mail address: skusljic@unimelb.edu.au (S. Kusljic).

https://doi.org/10.1016/j.colegn.2020.10.005
1322-7696/© 2021 Published by Elsevier Ltd on behalf of Australian College of Nursing Ltd.
E. O’Donoghue et al.
1. Introduction
Endometrial tissue is normally found in the inner layer of the
uterus which sheds each month resulting in menstrual bleeding,
also known as a period. Endometriosis occurs when endometrial-
like tissue forms lesions and grows outside the uterus (such
as within the pelvic cavity) while adenomyosis occurs when
endometrial-like tissue invades and grows into the muscle layer
of the uterus (Cockerham, 2012; Gökyıldız & Beji, 2012). Both
conditions may cause signs and symptoms such as pain disor-
ders including pelvic pain, dysmenorrhea, dyspareunia, dyschezia
and dysuria; menstrual abnormalities including abnormal uterine
bleeding (AUB) and heavy menstrual bleeding (HMB); and fertility
issues including infertility and subfertility (Australian Commission
on Safety and Quality in Health Care, 2017; National Institute for
Health and Care Excellence, 2017).
Principles of nursing care are the same for both endometrio-
sis and adenomyosis. Nursing care is the overarching term used to
encompass the nursing processes, standards of care and the con-
duct of nurses in the delivery of patient care. The nursing process
provides a structure consisting of assessment, diagnosis, planning,
implementation, and evaluation for the delivery of patient-centred
care (Buckley, Brown, Edwards, Aitken, & Harding, 2020). The stan-
dard of care is the determination of capability or competency within
the nurse’s scope of practice (Nursing and Midwifery Board of
Australia, 2017). The nursing code of conduct sets the legal require-
ments, professional behaviour and expectations required in the
delivery of care (Nursing and Midwifery Board of Australia, 2018).
Nurses are accountable for the care that is provided including the
level of performance as shown in the conduct of their decisions,
actions, behaviours, and responsibilities (Nursing and Midwifery
Board of Australia, 2017).
2. Literature review
Nurses deliver patient-centred care within diverse roles, set-
tings, and models of care across the healthcare system. In Australia,
the National Action Plan for Endometriosis and the Heavy Men-
strual Bleeding Clinical Care Standard outline the involvement of
nurses as an integral part of the healthcare team to deliver patient-
centred care and improve clinical care pathways for endometriosis
and adenomyosis (Australian Commission on Safety and Quality in
Health Care, 2017; Commonwealth of Australia, 2018).
The nurse is involved in the delivery of care for patients
with endometriosis and/or adenomyosis. Nursing activities can
include the identification of signs and symptoms associated with
endometriosis and/or adenomyosis, referral to other healthcare
professionals or services, direct patient care, implementation of
treatment, coordination of care, pain management, health edu-
cation, evaluation of treatment results and patient advocacy
(Abercrombie & Learman, 2012; Gökyıldız & Beji, 2012; Kelly-
Weeder, 2012; Wilson & Leese, 2013). Healthcare settings where
nurses can deliver care to patients with endometriosis and/or
adenomyosis include general practice, schools, emergency depart-
ments and sexual health services (Altman & Wolcyzk, 2010;
Hammarberg, Collison, Johnson, Nguyen, & Fisher, 2016; Kelly-
Weeder, 2012; Norton & Holloway, 2016).
The nursing workforce has the capacity to provide quality care
to patients with complex health needs such as endometriosis and
adenomyosis, both independently and in collaboration with other
healthcare professionals (Howe, 2016; Young, Eley, Patterson, &
Turner, 2016). The National Action Plan for Endometriosis details
the need for specialised nurses, nurse practitioners, nurse-led
care and to establish ‘Endometriosis Nurses’ like the Breast Care
Nurses (Commonwealth of Australia, 2018). Specialist nursing roles
for endometriosis and related conditions such as adenomyosis
465
Collegian 28 (2021) 464–468
(Commonwealth of Australia, 2018), could also improve the con-
tinuity of care and enhance the quality of care for patients just as
the Breast Care Nurses have shown (Eley & Rogers-Clark, 2012).
This role would also enable nursing practice within a model of care
coordination, support, information, and referral within a multidis-
ciplinary team (Eley & Rogers-Clark, 2012; Royal College of Nursing,
2015).
The importance of advanced nursing roles such as specialist
nurses and nurse practitioners in improving the delivery of patient
care has been reported in the literature (Eley & Rogers-Clark,
2012; Lowe, Plummer, O-Brien, & Boyd, 2012). However, a lack
of role clarity and consistency exists including questions regard-
ing the subsequent value and benefits to patients (Cook, McIntyre,
Recoche, & Lee, 2019; Lowe et al., 2012). It has been suggested that
there is limited research considering how nurses can best support
patients or how the nurse’s role impacts on patients who have signs
and symptoms of endometriosis and/or adenomyosis (Allan, 2013;
Lemaire, 2004). Further research to examine the nursing care for
patients with endometriosis and/or adenomyosis will make a valu-
able contribution to the evidence base. This will enable a foundation
of knowledge that may assist towards the planning and develop-
ment of future nursing roles in this area.
3. Review aim and objective
3.1. Aim
The aim of the review is to examine the nurse’s role in the
delivery of care for patients with endometriosis and/or adeno-
myosis. The PICO and PICo mnemonics are used to develop the
review title, research questions and inclusion criteria (Lizarondo
et al., 2017; Stern, Jordan, & McArthur, 2014). The elements of
the PICO mnemonic include Population, Intervention, Comparison
intervention and Outcome measures, and PICo mnemonic includes
Population, phenomenon of Interest and Context (Stern et al., 2014).
The review will incorporate both criteria by a combination of the
following elements:
Population – nurses
Intervention – nursing processes involved in the delivery of
patient care
Phenomenon of Interest – nursing standards of care and conduct
Context – healthcare system supports
Outcomes – impact of nursing care on patients with
endometriosis and/or adenomyosis
3.2. Preliminary search
A preliminary search was undertaken of The International
Prospective Register of Systematic Reviews (PROSPERO), Cochrane
Database of Systematic Reviews, and Joanna Briggs Institute (JBI)
Database of Systematic Reviews and Implementation Reports (up
to the 16th of May 2020). One systematic review protocol was
related to women with endometriosis and their experience with
healthcare professionals but is not related to nursing care and one
systematic review was related to the extent of which menstrual
cyclicity is assessed in clinical trials but is not related to nursing
care (Appendix A in a Supplementary material). Therefore, no com-
pleted or ongoing systematic reviews on this review topic have
been identified.
3.3. Objective
The objective of the review is to provide a synthesis of evi-
dence in a narrative summary on the nursing care for patients with
endometriosis and/or adenomyosis.
E. O’Donoghue et al.
Table 1
Inclusion and exclusion criteria.
Inclusion criteria
• Nurses involved in the delivery of care for patients with endometriosis
and/or adenomyosis including associated pain disorders, menstrual
abnormalities and/or fertility issues
• Processes involving nursing assessment, diagnosis, planning,
implementation & evaluation and/or standards of care & conduct reflecting
the domains of nursing competency
• Studies published in the English language and with full text availability
• Studies from peer reviewed journals and specified primary studies (such as
phenomenology, ethnography, analytical, descriptive, experimental,
nonexperimental)
Exclusion criteria
• Cases of extra pelvic endometriosis
• Acute episodes of pain or menstrual/uterine bleeding
• No, light, iatrogenic or postcoital menstrual bleeding
• Pregnancy or pregnancy related issues, cancer related pain or issues, male
specific issues
• Studies of reviews; textual evidence; grey literature; diagnostic, prevalence,
historical or economic evaluations; or animal models
4. Questions
The overall research question is: how do nurses deliver care for
patients with endometriosis and/or adenomyosis? The sub ques-
tions are:
1. What are the characteristics (demographics, employment,
knowledge, and experience) of nurses involved in the care for
patients with endometriosis and/or adenomyosis?
2. What are the processes, standards, and the conduct of nurses
in the delivery of care for patients with endometriosis and/or
adenomyosis?
3. What healthcare system supports have been utilised in the nurs-
ing care for patients with endometriosis and/or adenomyosis?
4. What impact does the nursing care have on patients with
endometriosis and/or adenomyosis?
5. Methodology
This systematic review protocol has met the PRISMA-P (2015)
checklist of recommended items (Appendix B in a Supplementary
material). The systematic review is guided by the JBI methodology
for mixed methods systematic reviews (Lizarondo et al., 2017).
5.1. Information sources
The databases to be searched include: CINAHL Complete
(EBSCO), MEDLINE (Ovid), EMBASE (Ovid), PubMed, Web of Science
and Emcare (Ovid).
5.2. Eligibility criteria
The screening of studies will be guided by the inclusion and
exclusion criteria (Table 1). Full details of the inclusion and exclu-
sion criteria can be found in Section 6 Study Selection.
5.3. Search strategy
An initial limited search of CINAHL Complete (EBSCO) and MED-
LINE (Ovid) has been undertaken to locate relevant articles that may
be suitable for the topic (Appendix C in a Supplementary material).
An analysis of the text words contained in the titles and abstracts of
relevant articles, and of the index terms used to describe the arti-
cles will be used to develop the full search strategy for the second
search (Appendix D in a Supplementary material).
466
Collegian 28 (2021) 464–468
A second and manual search will be completed with the intent
to locate published and peer reviewed studies. The second search,
including all identified keywords and index terms from the ini-
tial limited search, will be adapted across each of the included
information sources. A manual search will be undertaken from the
reference list of all selected studies to identify any additional arti-
cles which may be relevant to the topic. All identified records from
the manual search (excluding duplicates) will undertake the same
screening process as all included studies. Limitations in the search
strategy will be applied to studies published in the English lan-
guage. There will be no limitations applied to the publication year
in the search strategy.
5.4. Resource management
EndNote X8 (Clarivate Analytics:Philadelphia, PA.) will be used
for the storage of all identified records, documenting the removal
of duplicates and studies to be included in the review (Peters,
2017). The web-based software platform Covidence (Covidence
systematic review software, 2020) will be used to upload all
remaining identified records (excluding duplicates), and for screen-
ing the titles/abstracts and full text studies. Critical appraisal and
data extraction will be completed and compiled with the relevant
document files (via Microsoft Word and Microsoft Excel). Each step
of the search strategy will be documented (Appendix E in a Supple-
mentary material) by using a template of the Preferred Reporting
Items for Systematic Reviews and Meta-Analysis (PRISMA) 2009
Flow Diagram (Moher, Liberati, Tetzlaff, Altman, & The PRISMA
Group, 2009).
6. Study selection
At least two independent reviewers will undertake the screen-
ing, critical analysis, and data extraction of included studies. Any
conflicting reviewer decisions will be resolved with a third reviewer
and by a majority of consensus. If required, reviewers will attempt
to contact authors of papers on one occasion to request missing
or additional data for clarification and will wait for up to one week
for a response. The screening of records will be applied against pre-
determined rules for the inclusion and exclusion criteria (Appendix
F in a Supplementary material). The minimum rule for the inclusion
criteria is to include studies with at least one patient criteria, at least
one nurse criteria, and at least one intervention or phenomenon of
interest criteria. No rule has been set to address the context of the
healthcare system or outcomes of the impact on patients, as not all
studies may include information in these areas and these studies
will still be included in the review.
7. Screening
7.1. Title and abstract
All identified records, excluding duplications, will have the titles
and abstracts screened against the inclusion and exclusion criteria.
Any remaining records that do not have availability in full text,
publication in a peer review journal or published in the English
language will be excluded at this stage.
7.2. Full text
All remaining records will have the full text of articles screened
against the inclusion and exclusion criteria. Full text articles that do
not meet the inclusion criteria will have the reasons for exclusion
recorded and documented in the PRISMA flow chart (Appendix E
in a Supplementary material). Reasons for exclusion may include
(if applicable): incorrect methodology, incorrect patient, incorrect
E. O’Donoghue et al. Collegian 28 (2021) 464–468

Table 2 tary material). Qualitative data will be extracted from qualitative

Risk of bias assessment for qualitative research.
studies or the qualitative components of mixed methods studies
Citation Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 and quantitative data will be extracted from quantitative studies
or the quantitative components of mixed methods studies.

Questions can be found in the JBI critical appraisal checklist for qualitative research
(Lockwood et al., 2017). For each question: Yes (low bias), No (high bias), Unclear
(Unclear bias), N/A (not applicable).
Table 3
Risk of bias assessment outcomes.
Rating outcome (Level of Risk)
Positive (Low Risk of Bias)
Negative (High Risk of Bias)
Unknown (Unclear Risk of Bias)
Table 4
Summary of critical appraisal results.
Criterion description
Majority of low bias findings in a
single study
Majority of high bias findings in a
single study
Majority of unclear bias or N/A
findings in a single study
8.3. Data analysis
Data synthesis will be the construction of the separate qual-
itative data and quantitative data from the data extraction into a
configured integration of qualitative evidence and quantitative evi-
dence. Preliminary synthesis of data items will be tabulated (via
Microsoft Excel spreadsheets) from critical appraisal instruments
and data extraction forms. A summary of findings will be presented
in tables and will include the study characteristics, patients, nurs-
ing characteristics, nursing processes, nursing standards of care
and conduct, healthcare system support, and patient impacts. The
summary of findings tables will be used to explore relationships
in the data and develop concepts towards answering the research
questions in a narrative summary.

Citation Rating outcome Risk of bias (Low/High/Unclear) Comments 8.4. Ethical considerations

Any potential research misconduct that is identified while

Rating Outcome: positive rating (+), negative rating (−), unknown rating (?).
Comments: outcomes that impact on bias type e.g., selection bias, attrition bias,
reporting bias (poor/incomplete), conflicts of interest, multiple (duplicate) publica-
tion bias, outcome reporting bias.
population, incorrect intervention, or incorrect phenomenon of
interest.
conducting the review will be reported via email to the correspond-
ing author of the study and/or related journal where the study
had been published. Any papers that are suspected of research
misconduct will be considered for exclusion from the review to
maintain research integrity and is contingent on following the Aus-
tralian Code for the Responsible Conduct of Research (Australian
Government, 2007).

8. Data extraction and analysis 8.5. Validity and rigour

The review will follow a convergent segregated design for data

extraction as described in the JBI methodology for mixed methods
systematic reviews (Lizarondo et al., 2017).
8.1. Critical appraisal
Critical appraisal will be undertaken to determine the risk of bias
and methodology quality for all included studies. The relevant JBI
critical appraisal checklists will be used depending on the type of
article assessed (Lizarondo et al., 2017). Qualitative studies (and the
qualitative component of mixed methods studies) will be assessed
using the JBI Critical Appraisal Checklist for Qualitative Research
(Lockwood et al., 2017). Quantitative studies (and the quantitative
component of mixed methods studies) will be assessed using the
appropriate JBI critical appraisal checklist for quantitative stud-
ies such as quasi-experimental, cohort, case-control, case series
or reports or cross-sectional studies (Moola et al., 2017; Tufanaru,
Munn, Aromataris, Campbell, & Hopp, 2017). The risk of bias will
be reported in separate tables for each methodology checklist, for
example Table 2 will be used to assess the risk of bias for the qual-
itative research checklist.
Table 3 provides the risk of bias assessment outcomes that will
apply across all studies to determine the level of risk for bias.
Table 4 will be a summary of the critical appraisal results for all
included studies. Regardless of the results, all studies will undergo
data extraction and synthesis. The rating of studies from the critical
appraisal will be tabulated (via Microsoft Excel spreadsheets) in a
preliminary synthesis of data items and presented in a table.
The review will be guided by the JBI methodology for mixed
methods systematic reviews (Lizarondo et al., 2017). This will
demonstrate transparency, reduce the risk of bias, and increase the
validity and rigour of the review.
9. Conclusion
9.1. Key points
The review will examine the nurse’s role in the delivery of care
for patients with endometriosis and/or adenomyosis using a mixed
methods systematic review approach. A mixed methods review will
enable inclusion of evidence arising from qualitative, quantitative
and mixed methods studies across the characteristics of nurses;
their processes, standards and conduct; the healthcare system sup-
ports being utilised; and the impact of the nursing care on patients
with endometriosis and/or adenomyosis.
9.2. Limitations
The review may omit information due to the exclusion of speci-
fied articles such as textual evidence or grey literature, from authors
of studies who are contacted where a response is not received
within the specified timeframe, or of potentially relevant studies
which use other terminology that is not within the inclusion crite-
ria for the search strategy. It is possible that other relevant data or
studies may be missed even though the review will follow methods
using a comprehensive and systematic approach.

8.2. Data extraction 9.3. Impact statement

Qualitative and quantitative data will be extracted separately The review will provide a synthesis of evidence on the nurses’
into a data extraction form (Appendix G in a Supplementary mate- role in the delivery of care for patients with endometriosis and/or
rial). A reviewer guide will be included to outline requirements for adenomyosis. The evidence may inform key members of the mul-
completing the data extraction form (Appendix H in a Supplemen- tidisciplinary healthcare team, education providers, and policy

467
E. O’Donoghue et al.
makers on the need for nurses at all relevant practice levels and
care settings to be involved in improving the delivery of healthcare
for patients with endometriosis and/or adenomyosis.
Conflict of interest
None.
Author contributions
Erica O’Donoghue: Conceptualisation, Methodology, Writing
- original draft, Writing - review & editing. Suzanne Kapp:
Conceptualisation, Methodology, Writing - review & editing, Super-
vision. Tracy Murphy: Conceptualisation, Methodology, Writing -
review & editing, Supervision. Snezana Kusljic: Conceptualisation,
Methodology, Writing - review & editing, Supervision.
Funding
There have been no funding, scholarships or grants received for
this review.
Ethical statement
An ethical statement is not applicable as the work is based on
secondary research.
Acknowledgements
The systematic review will contribute to the Master of Advanced
Nursing Practice (minor thesis with coursework component) at the
University of Melbourne in Australia for E. O’Donoghue (Author A).
Appendix A. Supplementary data
Supplementary material related to this article can be found, in
the online version, at https://doi.org/10.1016/j.colegn.2020.10.005.
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