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Endo-ERN 'Transition of care' survey for rare endocrine disorders

Dear Participant,

Thank you for taking the time to participate in this survey, developed by the Endo-ERN 'Transition of Care' Working Group.

This survey aims to explore current practices, challenges, and strategies in managing the transition of care for patients with rare endocrine diseases across different healthcare providers and institutions. The questions address key aspects of evaluation, treatment, follow-up, and multidisciplinary collaboration during the transition from pediatric to adult care.


Survey Details:

- Estimated completion time: 15-20 minutes.

- All responses will be treated as confidential and will be used exclusively for research purposes within the framework of Endo-ERN.

At the end of the survey, you will also have the opportunity to share comments or suggestions to further enhance this research.

If you have any questions or need further clarification, please feel free to contact us at:

andrea.isidori@uniroma1.it & u.doehnert@uni-luebeck.de (Chairs)

francesco.carlomagno@uniroma1.it & matteo.spaziani@uniroma1.it (Managers)

Thank you for your valuable contribution!

Endo-ERN Transition of Care Working Group

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Endo-ERN Transition of care survey
1

Respondent's name, surname and e-mail address

E.g. Dr. John Smith, john.smith@university.com
2

Respondent's centre

E.g., 'Azienda Ospedaliero-Universitaria Policlinico Umberto I' of Rome, Italy
3

Is your centre...?

Select one answer in each row
4

Are you...?

Select one answer in each row
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Endo-ERN Transition of care survey

Setting

Evaluate current clinical setups (e.g., shared outpatient clinics, visit frequency) and standardized transition protocols from paediatrics to adult care.

5

Does your centre provide shared outpatient clinics for transitioning patients?

Select one answer
6

In case, how many joint visits are conducted before the actual transfer?

Select one answer
7

Do you use standardized clinical protocols or guidelines for transition and evaluation of transition efficiency at your clinic?

Select one answer
8

Which of the following topics are routinely addressed during the transition process at your centre?

Select all that apply
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Endo-ERN Transition of care survey

Tools

Assess the use of questionnaires for psychological feedback, and e-Health tools supporting transition. Examine specific tools, such as ‘transition readiness’ questionnaires, patient education courses and for monitoring patient progress.

9

What is the primary purpose of using questionnaires in the transition process in your centre?

Select all that apply
10

Which e-health tools you currently use are most beneficial for supporting transition care?

Select one answer
11

Which e-health tools do you think could be most beneficial for supporting transition care in the future?

Select one answer
12

What is the main barrier to implementing e-health tools for transition care in your centre?

Select one answer
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Endo-ERN Transition of care survey

Caregiver Involvement

Map caregiver roles in the transition process and support offered to them.

13

What strategies would most enhance caregiver involvement and support during transition?

Select one answer
14

What challenges do caregivers report during the transition?

Select all that apply
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Endo-ERN Transition of care survey

Timing and Criteria for Transition

Examine the criteria (e.g., age, clinical stability) for determining the ideal time to start the transition.

15

What age do you deem ideal to initiate the transition process?

Select one answer
16

What criteria do you use (or consider appropriate) to determine the start of the transition process?

Select all that apply
17

Which tool is typically used in your centre to assess the optimal timing for transition?

Select one answer
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Endo-ERN Transition of care survey

Collaboration Among Health Professionals

Analyse paediatric-adult physician collaboration and the transfer of clinical information.

18

Which of the following represents the main unmet need in the collaboration between paediatric and adult physicians during transition in your centre?

Select one answer
19

What is the key barrier to seamless collaboration between paediatric and adult endocrinologists in your centre?

Select one answer
20

Which strategy could most enhance collaboration between paediatric and adult health professionals in your centre?

Select one answer
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Endo-ERN Transition of care survey

Psychological support

Evaluate the role and the involvement of clinical psychologists in assessing patients’ needs and readiness for transition, helping develop transition plans, promote support and treatment adherence.

21

Is psychological readiness assessed during the transition process at your centre?

Select one answer
22

Are psychologists involved in developing transition plans for patients at your centre?

Select one answer
23

What role do psychologists play in post-transition follow-up care at your centre?

Select one answer
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Long-term Monitoring

Review follow-up protocols for post-transition care and continuity of care strategies in Endo-ERN centres.

24

How does your centre evaluate the effectiveness of long-term follow-up care post-transition?

Select one answer
25

What specific challenges do you encounter in ensuring long-term follow-up for transitioned patients?

Select one answer
26

What tools or strategies does your centre prioritize to enhance long-term follow-up care?

Select one answer
27

How satisfied are you with the current transition of care policies and procedures in place at your institution?

Select one answer
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Equity of Access to Services

Explore disparities in access to transition services based on region, socio-economic status, and ethnicity.

28

In your country, is the quality of care during the transition process influenced by regional differences (e.g., geography, availability of specialized centres)?

Select one answer
29

Does socio-economic status influence transition of care in your country?

Select one answer
30

To what extent does ethnicity influence the quality of care provided during the transition process in your country?

Select one answer
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Patient Experience

Gather patient feedback on transition experiences, including satisfaction and challenges faced.

31

Do you systematically collect patient feedback on their transition experience?

Select one answer
32

How is patient feedback on the transition process used in your centre?

Select one answer
33

What are the main challenges patients report during the transition?

Select all that apply
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Privacy and Data Security

Investigate privacy practices and patient data management during the transition process.

34

Are patients asked for consent to medical data transfer during the transition?

Select one answer
35

How is the patient’s medical history transferred during the transition?

Select one answer
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Endo-ERN Transition of care survey
36

Additional comments or observations?

Feel free to share additional information regarding your answers, or concerning 'transition of care' details or procedures at your centre.
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Thank you for your time and your feedback.
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