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Rheumatic disease (RD) encompasses a wide range of conditions. These include inflammatory arthritides (rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), juvenile idiopathic arthritis (JIA) and inflammatory bowel disease associated arthritis), connective tissue diseases (systemic lupus erythematosus (SLE), Sjögren’s syndrome and scleroderma), vasculitides (Behçet’s syndrome and Takayasu’s arteritis) and antiphospholipid antibody syndrome.
These multi-system conditions can affect many organ systems including musculoskeletal, dermatological, cardiovascular, respiratory and renal. Autoimmune conditions are particularly prevalent in Ireland, affecting over 10 per cent of the population. RA alone affects 860 people per 100,000.
RDs have a predilection for women of childbearing age. These chronic diseases can have a lifelong impact and long-term treatment to control symptoms and quality-of-life is key. Rheumatic disease can affect fertility and cause poor pregnancy outcomes in both mother (pre-eclampsia, renal failure, thrombosis or death) and baby (intra-uterine growth retardation, foetal heart block, preterm delivery or death). Pregnancy can also trigger disease flares (for example, in AS). Thus, in women with rheumatic diseases fertility, disease activity and management from pre-conception to lactation must be considered.
Some treatments (such as methotrexate and cyclophosphamide) are contraindicated in pregnancy and breastfeeding. However, recent guidelines from the British Society of Rheumatology (BSR) and European League Against Rheumatism (EULAR) state some disease-modifying anti-rheumatic drugs (DMARDs) including prednisolone, hydroxychloroquine and azathioprine are compatible with pregnancy and breastfeeding. Biologic DMARDs (etanercept and adalimumab) can be used at least in the early stages of pregnancy and certolizumab is compatible with pregnancy and breastfeeding.
Women of reproductive age need early counselling about their RD and the impact on reproductive outcomes. A multidisciplinary approach to pregnancy in women with RDs ensures best outcomes for mother and baby. Ideally, pregnancies should be planned while in disease remission on medications compatible with pregnancy.
Previous experiences: An unmet need
In a number of international studies, women with RDs and reproductive health needs have reported a level of dissatisfaction in relation to availability and standardisation of knowledge and the possible impact their disease may have on their ability to care for their children.
A 2013 survey of Irish rheumatology clinicians’ (n=114, physicians and nurses) knowledge, medication usage and perceived care needs for RD patients planning a family also showed discrepancies in patient care. Only 55 per cent of rheumatologists consulted directly with the obstetric teams and the majority (74 per cent) had no local guidelines for pregnancy-related care.
Variations existed between prescribing recommendations, prescribing practice and related advice with respect to most DMARDs. Variance in prescribing information was reported for all eight biologic DMARDs. Over 60 per cent of clinician respondents were unsure when biologic therapies should be discontinued pre-conception and considered them unsafe to use during pregnancy.
This discrepancy between evidence and practice led to dissatisfaction among women with their care. Patients reported varying management approaches, poor continuity of care, little evidence of shared care between rheumatologists and obstetricians, and few opportunities to discuss concerns and pregnancy plans in busy rheumatology clinics.
The above data suggested that the area of rheumatology and reproductive health was an area of unmet need for our patients. Thus, from 2013, RD patients with reproductive health needs within University College Dublin Academic Medical Centre were referred to a dedicated nurse-led clinic in Our Lady’s Hospice, Harold’s Cross. Initially, needs were assessed and care provided by an experienced clinical nurse specialist with direct access to rheumatology and obstetric consultants as required.
The aims of this service were to:
1. Identify healthcare and emotional needs of patients with a RD and to improve women’s experience of their reproductive healthcare journey;
2. Ensure access to a multidisciplinary healthcare team, and to timely woman-centred quality care based on best practice guidelines;
3. Ensure maintenance of disease control by appropriate medication management during all stages of pregnancy, optimising conception, positive pregnancy outcome and monitoring for postpartum flare;
4. Develop a model care pathway for dissemination to rheumatology and obstetric colleagues.
From January 2013 to January 2016, a total of 98 women were referred to this service. They had a variety of RD diagnoses and reproductive health needs. The majority of these patients had an inflammatory arthritis (41 RA, 16 PsA, eight AS, five JIA). Smaller numbers had other conditions including connective tissue diseases (seven patients with SLE) and vasculitides. The median age (range) was 35 years (19-48).
Ten women sought information only. A total of 88 women attempted to conceive and 76 babies were born to 62 mothers. Of these, 49 mothers had one live birth, while 13 mothers had two successful pregnancies; 25 singleton pregnancies and one set of twins. Three women conceived using assisted reproductive technology. Treatment wise, 24 women were on biologic agents, with nine remaining on these throughout their pregnancies. Breastfeeding rates at six weeks were relatively low at 28 per cent, compared to the figure of 55 per cent for the general population in Ireland. Patient satisfaction was evaluated using a validated questionnaire. The vast majority – 90 per cent – of women surveyed report that they were ‘very satisfied’ with the physical and emotional support received.
Present: Improving care
The healthcare team has grown to meet patient need, while ensuring safe practice and a learning environment. Since May 2017, a once-monthly clinic takes place in the National Maternity Hospital, Holles Street.
We welcome referrals for all women with an inflammatory arthritis, connective tissue disease or vasculitis who are planning pregnancy (ideally) or pregnant to the Rheumatology Obstetric Service (ROSE) clinic. Many patients have benefitted from shared care with local centres.
This service is now attended by the team members shown in Figure 1. Referral to other multidisciplinary team members in anaesthesiology, physiotherapy, bereavement counselling, occupational therapy and medical social work is facilitated as required.
Prior to commencing this service, no standardised or national care pathway had been developed to guide clinicians with respect to RD in pregnancy. To address this, we created an evidence-based reproductive care pathway for women with RD.
The service is now effectively running for over a year in the National Maternity Hospital. We have developed a care pathway for pre-conception counselling and a standard approach to monitor and manage pregnancy using a multidisciplinary approach. It is now time to look to the future and set new goals for further improvement and for expanding this service.
There are numerous medical ‘hard endpoints’ for us to measure in RD patients. There are disease activity scores for many of the conditions we treat. Some of these have even been validated for use in pregnancy. Collecting clinical data on pregnancy rates, live birth rates and pregnancy outcomes including complications is a clearly very important way of assessing the quality of care provided.
However, it may be an oversimplification to suggest that the success of a multidisciplinary approach should be measured only in terms of maternal and foetal survival and morbidity. Of course, a successful pregnancy outcome is very important for maternal and neonatal wellbeing. With improvement of care and better disease control, these results would often follow naturally. Yet, it became apparent from discussions at the 2018 Rheum Ob Connect meeting, (a collaborative multidisciplinary meeting co-hosted by St Vincent’s University Hospital and the National Maternity Hospital in May 2018) that the situation is not as simple as that.
There are other factors important in the care of women during pregnancy yet to be addressed. During the meeting, there was an interesting debate about what outcome measurements or data we should collect. Clinicians from different backgrounds had differing opinions. For a rheumatologist, long-term disease control and preservation of function is important. While an obstetrician may be more concerned about the effects of the medication on the foetus, our midwives taught us that successful breastfeeding is an issue, as is the confidence of these women in their new role as a mother.
This interdisciplinary expertise and discussion is crucial in further improving care for our patients and their families.
We then asked what are the key issues for our patients, but had no patients at the meeting. This issue seems to have been overlooked. We realised that patient engagement and examining patient-reported outcome measures must be a key priority for future patient-tailored care.
Patient-reported outcome measures have to be collected to prove the benefit of a multidisciplinary approach. While measuring the success of the team in controlling the disease, ‘hard endpoints’ reflect only a part of the possible positive effects.
We have created the ROSE registry to examine the outcomes of our service. This shares common data points with the European network of pregnancy registers in rheumatology (EuNeP), enabling collaboration and comparison with other European centres.
We set our goal not only to improve clinical outcome but also to give prospective mothers a positive experience with our service. This is not only to further improve clinical outcome, but also to justify the use of economic resources to sustain this service in the future.
To conclude, achieving optimal disease control with appropriate medication during all stages of the reproductive health journey is very important to improving reproductive healthcare outcomes in RD patients. Disease activity is a strong predictor of infertility and subfertility. If RD remains active or flares during pregnancy, it is associated with poorer pregnancy outcomes. These data can also be used to counsel women attempting future pregnancies.
The development of this integrated service has been very rewarding. We also believe this novel clinic will provide further evidence for the development and implementation of a national standard of care addressing a hitherto unmet need in an important healthcare setting for this vulnerable RD patient cohort.