Evaluation of the Awareness of Vasculitis and Lupus Patients of Medication Side-Effects

EVALUATION OF THE AWARENESS OF VASCULITIS AND LUPUS PATIENTS OF MEDICATION SIDE-EFFECTS, INCLUDING EFFECTS ON FERTILITY Mrinalini Dey1, Lisa Willcocks1 1Vasculitis and Lupus Service, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust

INTRODUCTION: Complex autoimmune diseases such as ANCA vasculitis and systemic lupus erythematosus (SLE), and their therapy, have multiple effects on the physical and mental well-being of patients, including effects on fertility. Immunosuppressive treatment may reduce fertility, or be teratogenic. Although only a proportion of vasculitis patients is of child-bearing age, we were concerned that these effects are often overlooked. AIMS: We wished to assess quality of life of patients attending the vasculitis and lupus clinic in our hospital, and review patient awareness of side-effects of immunosuppression, with a focus on fertility. We planned to use the information obtained to improve patients’ understanding of the impact of medication on fertility and general health. METHODS: The study cohort comprised 45 patients, 18-40 years, attending the vasculitis and lupus clinic at our hospital over 5 weeks. Male:female ratio was 1:4, reflecting the disease epidemiology in this age group - SLE is most common in females 20-45 years, and was also the most common diagnosis in this cohort. Data was collected during a 20 minute interview, all conducted by the same interviewer. The interview aimed to gain a clinical history, assess quality of life and patient awareness of side-effects of immunosuppressants and other medication, and establish the quantity, quality and adequacy of information patients had received on side-effects. RESULTS: Regarding quality of life, >50% interviewees were in full-time employment/ study. Of those who had permanently/ temporarily stopped work, the most common diagnoses were Behcet’s disease and granulomatosis with polyangiitis (GPA). 24 patients (53%) described their condition as having a ‘major effect’ on their social lives (defined as no longer feeling able or comfortable to socialise). The most common reasons given were fatigue or reduced mobility. The most common diagnosis among such patients was Behcet’s. Regarding medication, side-effects and fertility, the most commonly prescribed immunosuppressant was prednisolone. The majority of patients felt that the weight gain associated with this drug was the most obvious and irksome side-effect of the treatment. The most common cause for stopping a drug (aside from reaching the end of the course) was intolerance; the least well-tolerated drug was azathioprine. 17 out of 45 patients (38%) denied receiving information leaflets on immunosuppressant side-effects. Of patients who received information leaflets, 25% denied receiving information on fertility-related side-effects, while 21 of 45 patients (47%) did not know whether to stop medications prior to conception. 5 of the 7 patients (71%) taking cyclophosphamide were aware of its fertility-related side-effects. Mycophenolate and methotrexate are teratogenic; 15 of the 18 mycophenolate users (83%) were aware of this, compared to 4 of the 8 methotrexate users (50%). Of patients wishing to have children in the future, 30% were aware of pre-conception counselling services, available via our service. CONCLUSIONS: 38% patients did not receive adequate information on treatment side-effects, highlighting a need to ensure patients receive such information, particularly as side-effects of medications such as steroids are potentially highly debilitating. A proportion of patients who are on immunosuppressants were unaware of fertility-related side-effects of their medication, as well as the availability of pre-conception counselling services. Early discussions should be encouraged with patients of this age on immunosuppression side-effects, future family plans and how this may be affected by treatment, as well as the availability of pre-conception counselling.