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\begin{document}

\title{A commentary on the need for support with mental as well as physical
health for people with endometriosis during the COVID-19 pandemic and
beyond.}



\author[1]{Lysia Demetriou}%
\author[2]{Emma Cox}%
\author[1]{Claire Lunde}%
\author[1]{Christian Becker}%
\author[1]{Adriana  Invitti}%
\author[1]{Beatriz Martínez-Burgo}%
\author[3]{Marina Kvaskoff}%
\author[1]{Kurtis Garbutt}%
\author[4]{Emma Evans}%
\author[1]{Elaine Fox}%
\author[1]{Krina Zondervan}%
\author[1]{Katy Vincent}%
\affil[1]{University of Oxford}%
\affil[2]{Endometriosis UK }%
\affil[3]{Universite Paris-Saclay}%
\affil[4]{Oxford University Hospitals NHS Foundation Trust}%


\vspace{-1em}



  
  \date{June 10, 2024}


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\section*{Title Page}

{\label{title-page}}

\subsection*{Title:}

{\label{title}}

A commentary on the need for support with mental as well as physical
health for people with endometriosis during the COVID-19 pandemic and
beyond.

\subsection*{Authors:}

{\label{authors}}

Lysia Demetriou, Emma Cox, Claire E. Lunde, Christian M Becker, Adriana
L. Invitti, Beatriz Mart\selectlanguage{ngerman}ínez-Burgo, Marina Kvaskoff, Kurtis Garbutt,
Emma Evans, Elaine Fox, Krina T Zondervan, Katy Vincent.

\subsection*{Corresponding author contact
information:}

{\label{corresponding-author-contact-information}}

Prof Katy Vincent

Nuffield Department of Women's \& Reproductive Health

University of Oxford

John Radcliffe Hospital

Oxford

OX3 9DU

Tel: 01865 220024

Fax: 01865 769141 katy.vincent@wrh.ox.ac.uk

\subsection*{}

{\label{section}}

\subsection*{Author information:}

{\label{author-information}}

\textbf{Lysia Demetriou} , PhD, lysimachi.demetriou@wrh.ox.ac.uk ,
Nuffield Department of Women's and Reproductive Health, University of
Oxford.

\textbf{Emma Cox} , MSc, MBA, ceo@endometriosis-uk.org, Endometriosis UK

\textbf{Christian Becker} , MD; christian.becker@wrh.ox.ac.uk; Nuffield
Department of Women's and Reproductive Health, University of Oxford

\textbf{Claire E. Lunde} , BS, BA; claire.lunde@spc.ox.ac.uk; (1)
Nuffield Department of Women's and Reproductive Health, University of
Oxford. (2) Biobehavioral Pediatric Pain Lab, Department of Psychiatry,
Boston Children's Hospital; (3) Center for Pain and the Brain (P.A.I.N.
Group), Department of Anesthesiology, Critical Care, and Pain Medicine,
Boston Children's Hospital

\textbf{Adriana Invitti} , PhD, adriana.invitti@wrh.ox.ac.uk; (1)
Nuffield Department of Women's and Reproductive Health, University of
Oxford; (2) Departamento de Ginecologia, Universidade Federal de São
Paulo.

\textbf{Beatriz Martínez-Burgo} , PhD,
beatriz.martinezburgo@wrh.ox.ac.uk, Nuffield Department of Women's and
Reproductive Health, University of Oxford

\textbf{Marina Kvaskoff} , PhD, marina.kvaskoff@inserm.fr, Université
Paris-Saclay, UVSQ, Univ. Paris-Sud, Inserm, Gustave Roussy, ''Exposome
and Heredity'' Team, CESP, F-94805, Villejuif, France

\textbf{Kurtis Garbutt,} EngD, kurtis.garbutt@wrh.ox.ac.uk, Nuffield
Department of Women's and Reproductive Health, University of Oxford.

\textbf{Emma Evans} , DClinPsych, emma.evans@ouh.nhs.uk, Oxford
University Hospitals NHS Foundation Trust

\textbf{Elaine Fox,} PhD, elaine.fox@psy.ox.ac.uk, Department of
Experimental Psychology, University of Oxford.

\textbf{Krina Zondervan} , DPhil, krina.zondervan@wrh.ox.ac.uk, (1)
Nuffield Department of Women's and Reproductive Health, University of
Oxford; (2) Wellcome Centre for Human Genetics, University of Oxford

\textbf{Katy Vincent} , DPhil, katy.vincent@wrh.ox.ac.uk, Nuffield
Department of Women's and Reproductive Health, University of Oxford.

\subsection*{}

{\label{section-1}}

\subsection*{Running Title: Support for people with
endometriosis}

{\label{running-title-support-for-people-with-endometriosis}}

\subsection*{}

{\label{section-2}}

\subsection*{Manuscript word count: 1282
words}

{\label{manuscript-word-count-1282-words}}

\subsection*{}

{\label{section-3}}

The coronavirus disease 2019 (COVID-19) pandemic meant an abrupt change
in healthcare provision around the world. Whilst the primary focus was
(rightly) on the care of those infected with SARS-CoV-2 and public
health measures to prevent transmission/identify those most at risk,
individuals with chronic conditions saw their treatments halted,
cancelled or changed, with little information available and extremely
limited access to clinicians\textsuperscript{1-3}. As the first wave
settled, many units began to restart their benign gynaecology services,
however, this was within the limitations of social distancing, reduced
staffing (due to sickness, shielding or COVID-19 contact) and the
continued need for personal protective equipment (PPE). At a global
level, the focus remained on public health measures and the search for a
vaccine\textsuperscript{4}.

Everyone had their own personal experience of the initial lockdowns and
ongoing restrictions, the extent and timing of which varied throughout
the world. Many were able to find at least some positives to contrast
with the limitation on freedom and continuing background threat from the
virus. These included more time to spend with their nuclear family,
reigniting interest in or starting new hobbies, the opportunity to
tackle home improvements and more time to exercise. However, data also
began to emerge on the significant impact the pandemic was having on
mental health\textsuperscript{5, 6}. Of particular relevance to
Obstetricians and Gynaecologists was the finding that along with young
people and those with small children at home, mental health was
deteriorating most in women\textsuperscript{6}.

As endometriosis is a chronic disease, many of those affected rely on
long term medication, whilst others require one or more procedures
(surgery or fertility treatment). We were concerned as to the impact the
pandemic might be having on the access to treatment for those with
endometriosis. We therefore conducted an online survey study to
determine this impact and understand priorities going forwards. The
survey (open 11\textsuperscript{th} May to 8\textsuperscript{th} June
2020; University of Oxford Central University Research Ethics Committee
approval reference: R69636/RE001) was available in English, French,
German, Spanish and Portuguese and had 7246 respondents. 6729 of these
met inclusion criteria (\(\geq\)18 years old; self-reported
endometriosis diagnosis by surgery or imaging) covering most regions of
the world (Europe: n=4502; North America: n=973; Latin America and
Caribbean: n=662; Oceania: n=379; Asia: n=35; Africa: n=28; Unknown:
n=150).

Overall, 80.7\% (95\% CI {[}79.7, 81.6{]}) reported an impact on their
current or planned treatments. Based on enquiries to Endometriosis UK
and what we were hearing clinically, we had expected many challenges
with accessing medications especially injectables. However, 64.6\%
reported no impact of the pandemic on the availability of their usual
treatments for endometriosis (n=4267). Although 20.3\% (n=1337) did
report difficulty obtaining repeat prescriptions, 10.5\% having to
change their hormone and/or painkiller (4.5\% and 7.0\% respectively),
whilst 9.5\% had to stop a medication altogether (hormones: 3.4\%;
painkillers 6.6\%). The impact on planned care was much greater: 50.0\%
of responders reported cancelled/postponed appointments with
gynaecologists and 14.7\% described cancelled/postponed primary care
appointments; 37.2\% had procedures cancelled/postponed (surgery:
27.0\%; fertility: 12.0\%). These proportions were similar around the
world (Table 1).

Our data demonstrate the considerable impact the COVID-19 pandemic has
had on the care of people around the world with endometriosis. These
findings agree with studies in Urology\textsuperscript{7},
Dermatology\textsuperscript{2} and a smaller Turkish endometriosis
cohort (n=261)\textsuperscript{3}, suggesting a significant impact on
benign services. Concerns have also been expressed about the impact on
those with chronic pain, both in terms of difficulties accessing
treatments including physiotherapy and psychology and the possibility of
medication issues due to telephone prescribing\textsuperscript{8}.
During this second wave and as we move forwards, it is essential that we
minimise the impact on those with chronic conditions. Redesigning
services with the priorities of those suffering with the conditions in
mind will be essential to achieving this aim.

In our survey we also asked ``\emph{During the pandemic, what one thing
would be most helpful to you, relating to endometriosis?} '' and
``\emph{As restrictions begin to ease and healthcare starts to go back
to normal, what one thing do you think should be prioritised with
regards to endometriosis?} ''. Respondents considered that during the
pandemic the most helpful things would be: contact with their
gynaecologist (32.6\%); dates booked for future surgery/fertility
treatments (20.5\%); and mental health support (20.3\%). Improving
availability of medication and contact with primary care were less
popular (11.1\% and 8.6\% respectively). As restrictions ease,
priorities are: arranging cancelled/postponed procedures (42.7\%) or
appointments with their gynaecologists (32.1\%) and mental health
support (13.0\%). Considerably less chose medication availability
(5.3\%) or primary care appointments (3.8\%). Figure 1 illustrates how
similar these priorities were around the world.

It was notable that the top three priorities during and immediately
after the pandemic were remarkably consistent around the world. Given
how rapidly telemedicine has been adopted globally, it should not be a
challenge to arrange contact between patients and their gynaecologists
by either telephone or video. However, this does necessitate
gynaecologists being available to provide this service and argues
against them being redeployed to cover emergency services as commonly
occurred during the height of the first wave. We do not believe that
primary care appointments should be recommended as a substitute for
gynaecology appointments. These are clearly not the priority for those
with endometriosis and primary care services have been placed under
considerable pressures during the pandemic\textsuperscript{9}. Whilst
little can be done to reduce waiting times for procedures (both surgical
and fertility treatments), we should at least be open with patients,
giving a realistic timeframe in which we expect to be able to offer
these.

Although these first two priorities were not surprising, we did not
expect to see such a high proportion prioritising mental health over and
above all other aspects of their endometriosis care. There has been an
increasing focus on comorbid mental health conditions in people with
endometriosis over recent years, including two high profile UK
investigations\textsuperscript{10, 11}, yet guidance on the management
of the condition does not reflect this. Whilst the pandemic continues,
mental health support can be delivered virtually, both standalone and in
the context of pain management\textsuperscript{12}. However, this is one
change we believe should continue for the long-term and therefore
investment in psychology, ideally embedded within gynaecology services,
will be essential. Integrating mental health support into the standard
of care for endometriosis could be one positive to come out of this
pandemic and might be expected to have a real impact on quality of life.

Finally, we were concerned to see that more than half of respondents
worried that their endometriosis makes them more vulnerable to COVID-19
(n=3635, 54.2\% 95\% CI {[}53.0, 55.4{]}; only n=22 did not answer this
question). This may be because the known link to altered immunological
responses has been misinterpreted as endometriosis being an autoimmune
condition\textsuperscript{7}, with additional concerns for those with
thoracic endometriosis. Given that so far there is no evidence to
support this belief, we consider it essential that clinicians address
this issue with their patients, and education campaigns should be
considered. Worries about their vulnerability to COVID-19 may add to the
feelings of threat experienced during the pandemic and thus contribute
to worsening mental health.

In conclusion, COVID-19 has clearly had a devastating effect on health
and healthcare around the world. At least in the initial phases, those
with chronic conditions (including endometriosis) experienced a
significant impact on their care, the longer-lasting effects of which
remain to be determined. Moving forwards, it will be essential to take
patient priorities into consideration as financially-strained healthcare
providers redesign their services. We hope that this additional evidence
of the desire for support with mental health in combination with other
work highlighting this as an area of real need leads to a sustained
change in the availability of psychologists within gynaecology services.

\section*{References}

{\label{references}}

1. Teoh JY, Ong WLK, Gonzalez-Padilla D, Castellani D, Dubin JM, Esperto
F, et al. A Global Survey on the Impact of COVID-19 on Urological
Services. Eur Urol. 2020 Aug;78(2):265-75.

2. Tanacan E, Aksoy Sarac G, Emeksiz MAC, Dincer Rota D, Erdogan FG.
Changing trends in dermatology practice during COVID-19 pandemic: A
single tertiary center experience. Dermatol Ther. 2020 Aug 6:e14136.

3. Yalcin Bahat P, Kaya C, Selcuki NFT, Polat I, Usta T, Oral E. The
COVID-19 pandemic and patients with endometriosis: A survey-based study
conducted in Turkey. Int J Gynaecol Obstet. 2020 Nov;151(2):249-52.

4. Rawat K, Kumari P, Saha L. COVID-19 vaccine: A recent update in
pipeline vaccines, their design and development strategies. Eur J
Pharmacol. 2020 Nov 24:173751.

5. Torales J, O'Higgins M, Castaldelli-Maia JM, Ventriglio A. The
outbreak of COVID-19 coronavirus and its impact on global mental health.
Int J Soc Psychiatry. 2020 Jun;66(4):317-20.

6. Pierce M, Hope H, Ford T, Hatch S, Hotopf M, John A, et al. Mental
health before and during the COVID-19 pandemic: a longitudinal
probability sample survey of the UK population. Lancet Psychiatry. 2020
Oct;7(10):883-92.

7. Zondervan KT, Becker CM, Koga K, Missmer SA, Taylor RN, Vigano P.
Endometriosis. Nat Rev Dis Primers. 2018 Jul 19;4(1):9.

8. Javed S, Hung J, Huh BK. Impact of COVID-19 on chronic pain patients:
a pain physician's perspective. Pain Manag. 2020 Sep;10(5):275-7.

9. Rawaf S, Allen LN, Stigler FL, Kringos D, Quezada Yamamoto H, van
Weel C, et al. Lessons on the COVID-19 pandemic, for and by primary care
professionals worldwide. Eur J Gen Pract. 2020 Dec;26(1):129-33.

10. APPG. Endometriosis in the UK: time for change. APPG on
Endometriosis Inquiry Report 2020.; 2020.

11. BBC. Endometriosis: Thousands share devastating impact of condition.
2019 {[}cited; Available from:
https://www.bbc.co.uk/news/health-49897873

12. Eccleston C, Blyth FM, Dear BF, Fisher EA, Keefe FJ, Lynch ME, et
al. Managing patients with chronic pain during the COVID-19 outbreak:
considerations for the rapid introduction of remotely supported
(eHealth) pain management services. Pain. 2020 May;161(5):889-93.

\section*{Contribution to authorship}

{\label{contribution-to-authorship}}

KV conceived the study. EC, CL, CB, AI, BM, MK, KG, EE, EF, KZ AND KV
designed the study including translations. LD, CB, AI, BM and MK
analysed the data. KV drafted the manuscript. All authors contributed to
revising the manuscript.

\section*{Disclosure of interests}

{\label{disclosure-of-interests}}

There are no competing interests directly relevant to this work.
Completed ICMJE disclosure of interest forms for each author are
available.

\section*{Ethics approval}

{\label{ethics-approval}}

The study was approved by the University of Oxford Central University
Research Ethics Committee approval reference: R69636/RE001.

\section*{Funding}

{\label{funding}}

There was no funding associated with this study.\selectlanguage{english}
\begin{figure}[H]
\begin{center}
\includegraphics[width=0.70\columnwidth]{figures/image1/image1}

\end{center}
\end{figure}

\section*{\textbackslash{}protectTable}

{\label{table}}

\textbf{Table 1. Alterations to current and planned treatments.} Global
and regional results for Europe, Oceania, North America, Latin America
and Caribbean to the questions ``Has the pandemic altered the
availability of your treatments for endometriosis?'' and ``Has the
pandemic altered your planned treatments relating to endometriosis?''.
For clarity, the table include answers that had more than 5\% frequency.
Regions are defined as per WHO recommendations
(https://www.ghsindex.org/). Data presented as frequencies (No.) and
percentages (\%). Percentages are calculated using the number of
responders in each region for each question as denominator.

\section*{Figure Legend}

{\label{figure-legend}}

Figure 1. Regional results for: \textbf{(a) Priorities during the
pandemic.} Regional results for Europe (N=4398), Oceania (N=370), North
America (N=939), Latin America and Caribbean (N=642) to the question
``During the pandemic, what one thing would be most helpful to you,
relating to endometriosis?''. \textbf{(b) Priorities as restrictions
ease.} Regional results for Europe (N=6334), Oceania (N=370), North
America (N=951), Latin America and Caribbean (N=649) to the question
``As restrictions begin to ease and healthcare starts to go back to
normal, what one thing do you think should be prioritised with regards
to endometriosis?''. For clarity, the graphs include answers that had
more than 2\% frequency. Regions are defined as per WHO recommendations.
Data presented as frequencies (No.).\selectlanguage{english}
\begin{figure}[H]
\begin{center}
\includegraphics[width=0.70\columnwidth]{figures/Figure-1/Figure-1}

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\selectlanguage{english}
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