Table 1 The 25 questions on the national survey

1

What is your age?

2

What is your sex?

3

What is your highest degree?

4

How long have you been engaged in endocrine clinical work?

5

What is your professional title?

6

Are you currently working at a teaching hospital?

7

What is the approximate number of cases of rare endocrine diseases that you treat every year?

8

How many times do you participate in the multidisciplinary diagnosis and treatment of patients with rare endocrine diseases every year?

9

How many times do you receive online/offline academic training on the diagnosis and treatment of rare endocrine diseases each year?

10

Do you invite patients to participate in medical decision-making during the diagnosis and treatment of rare endocrine diseases?

11

Do you provide patients with detailed information on the available treatment options?

12

Would you say to a patient, ‘Different people have different considerations, and among the possible benefits and risks of these plans, which outcomes do you expect to achieve? Which outcomes are your concerns?’

13

After clarifying a patient’s preferences for treatment, would you help them weigh the pros and cons of possible options?

14

During the diagnosis and treatment process, would you say to a patient, ‘Let’s discuss what needs to be done next?’

15

Do you use doctor‒patient collaborative decision-making network resources in your daily work?

16

What do you think are the obstacles to making appropriate joint decisions with patients?

For question 17 to question 25, a scene of an adult patient with Turner syndrome is described. The patient is unwilling to continue treatment due to concerns about the impact of oral oestrogen and progesterone on liver function. You have discussed the next treatment plan with her. Please answer the following questions. A score of 0 points indicates that you complete disagree, and a score of 5 points indicates that you completely agree (the SMD-Q-Doc questionnaire).

17

I have made it clear to the patient that taking oral oestrogen and progesterone is very important, and whether to continue treatment must be decided upon.

18

I would like to have a clear understanding of how the patient made the decision to terminate oestrogen and progesterone therapy.

19

I have informed the patient what different treatment options are available based on the current situation.

20

I accurately explained the pros and cons of different treatment options to the patient.

21

I helped the patient understand all the relevant information about the disease itself and oestrogen and progesterone treatment.

22

I asked the patient what treatment plan she was most willing to choose.

23

I discussed with the patient, and we comprehensively weighed the pros and cons of different treatment plans such as stopping the medication, adjusting the dosage, and using different formulations.

24

We made joint decisions about the next treatment plan.

25

I reached a consensus with the patient regarding whether she should receive oestrogen and progesterone treatment, as well as the methods and details of treatment.