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Tell us about your interactions with your child's pediatric rheumatologist during a normal visit. For example, do you prepare questions/concerns ahead of time, do you take a notebook, is the appointment a listening session for you or do you interact and ask questions throughout, do you feel you are a partner in the decision making?

• I often prepare questions ahead of time and write them down… Interaction is comfortable and helpful with our rheumatologist. - My husband is involved in all the decisions made concerning [H’s] health. We take care of all her issues as a team.

• [B’s] mother brings questions and takes notes about everything. Her doctor thoroughly answers the questions and in addition she sits down and talks about various things that are going on with [B]. Once she said she would welcome a second opinion and another time she had made arrangements for another doctor to come in to evaluate something as well as giving us examples of options available should things not go as planned.

• We always bring a notebook and I usually have questions. Our rheumatologist can be rushed sometimes which is frustrating. Other times he takes more time to talk with us. He is open to second opinions, which I have appreciated.

• [I would suggest that you] begin a departmental notebook. The notebook would contain the dates/times/data discussed [at the doctor visit] and suggested treatment. Another section would [detail] my problems as they progressed and finally, a section for questions to the physician. …Upon the next visit, the physician would answer the questions.

• I have a note book that I take with me with things I have noticed between appointments and also so I can note down what the doctor has said so I can inform my husband as he is not always able to get the time off work. Our Doctor is fantastic and we are able to contact her any time if need be, she will often ask how I feel [my daughter] is as I see her most so will notice any changes. She always takes my concerns seriously. After we have discussed how [my daughter] is progressing she will do a physical assessment and then discuss any changes in treatment and make sure I'm happy with them. I'm really comfortable telling her if I don't feel [my daughter] is ready when say her prednisone is reduced etc.