Research to improve patient concerns and outcomes in arthritis in pregnancy

In the UK there are around 14,500 female patients with rheumatoid arthritis (RA) who are of a child-bearing age.

Understandably, people have concerns regarding RA and pregnancy, such as:

·         which drugs are safe to take during pregnancy and while breastfeeding

·         the effect RA may have on a baby

·         what effects pregnancy will have on RA.

Older research studies reported that the majority of patients with RA experienced a significant improvement in their symptoms during pregnancy.

More recent studies using objective measures of disease activity, such as counting the number of swollen and tender joints, have shown that fewer patients with RA improve in pregnancy than was previously thought.

However, measuring and predicting disease activity during pregnancy remains difficult. For example, swollen joint counts in pregnancy may be affected by swelling of hands and feet that is normal in pregnancy.

Therefore, other methods to assess disease activity during pregnancy are needed. One method may be ultrasound scanning of joints. Another could be blood tests to identify abnormalities in patients' immune systems that could increase disease activity during pregnancy.

Recently, evidence has shown the importance of keeping arthritis under control during pregnancy in order to promote the best outcomes for both mother and baby.

We are a team at University College London designing a research project aiming to address these issues by coupling the accurate measurement of disease activity in pregnant RA patients with laboratory research to identify immune system abnormalities associated with different disease activity levels.

To make sure we study the issues that are most important to patients with RA in pregnancy, we would be very grateful if you could take two minutes to answer this short questionnaire.

We will run this survey for 2 - 3 months and will then write up the results for publication in a scientific journal.

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* 1. Are you

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* 2. If you have been pregnant previously, how recently was this?

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* 3. How long have you had RA?

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* 4. Are you satisfied with the amount of information you have been given on pregnancy and arthritis from
.... Discussions with the doctors looking after your arthritis? (from 1 = not at all satisfied to 10 = extremely satisfied):

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 5. ... Discussions with the nurses looking after your arthritis?

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 6. ... Educational materials from the NHS?

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 7. ... Other arthritis organisations and charities?

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 8. Have you ever been dissuaded from pregnancy due to concerns about your arthritis?

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* 9. How important is it for you to know more about
... drug safety during pregnancy? (From 1 = not at all important to 10 = extremely important)

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 10. ... drug safety during breastfeeding?

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 11. How concerned are you that your arthritis will affect your pregnancy? (From 1 = not at all concerned to 10 = extremely concerned)

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 12. How concerned are you that your pregnancy will affect your arthritis?

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 13. How important do you think it is to continue medication to control arthritis in pregnancy? (From 1 = not at all important to 10 = extremely important)

0 10
i We adjusted the number you entered based on the slider’s scale.

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* 14. Which one of the following would be your preference regarding treatment of your RA in pregnancy?

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* 15. Which of the following do you think is the most important for research to focus on? (Please rank each option from 1 = most important to 4 = least important)

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* 16. Would you be prepared to have an ultrasound scan of your joints during pregnancy to help measure the activity of your RA? This is a non-invasive scan using the same equipment used to monitor the development of your baby.

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* 17. Thank you very much for completing this survey. Please leave any other comments you may have about research into RA and pregnancy

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