Title Page
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.
Authors:
Lysia Demetriou, Emma Cox, Claire E. Lunde, Christian M Becker, Adriana
L. Invitti, Beatriz Martínez-Burgo, Marina Kvaskoff, Kurtis Garbutt,
Emma Evans, Elaine Fox, Krina T Zondervan, Katy Vincent.
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
Author information:
Lysia Demetriou , PhD, lysimachi.demetriou@wrh.ox.ac.uk ,
Nuffield Department of Women’s and Reproductive Health, University of
Oxford.
Emma Cox , MSc, MBA, ceo@endometriosis-uk.org, Endometriosis UK
Christian Becker , MD;
christian.becker@wrh.ox.ac.uk;
Nuffield Department of Women’s and Reproductive Health, University of
Oxford
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
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.
Beatriz Martínez-Burgo , PhD,
beatriz.martinezburgo@wrh.ox.ac.uk,
Nuffield Department of Women’s and Reproductive Health, University of
Oxford
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
Kurtis Garbutt, EngD,
kurtis.garbutt@wrh.ox.ac.uk,
Nuffield Department of Women’s and Reproductive Health, University of
Oxford.
Emma Evans , DClinPsych,
emma.evans@ouh.nhs.uk,
Oxford University Hospitals NHS Foundation Trust
Elaine Fox, PhD,
elaine.fox@psy.ox.ac.uk,
Department of Experimental Psychology, University of Oxford.
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
Katy Vincent , DPhil,
katy.vincent@wrh.ox.ac.uk,
Nuffield Department of Women’s and Reproductive Health, University of
Oxford.
Running Title: Support for people with
endometriosis
Manuscript word count: 1282
words
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 clinicians1-3. 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
vaccine4.
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 health5, 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 women6.
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 11th May to 8th 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 Urology7,
Dermatology2 and a smaller Turkish endometriosis
cohort (n=261)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 prescribing8.
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 “During the pandemic, what one thing
would be most helpful to you, relating to endometriosis? ” and
“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 pandemic9. 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
investigations10, 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 management12. 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
condition7, 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.