Survey on IBD Nursing Role in Caring for Patients with Crohn’s Disease & Ulcerative Colitis in Europe


Introduction

The ECCO Committee of Nurses (N-ECCO) is updating the original N-ECCO Consensus to keep up with the latest improvements in IBD nursing. This update is important because of the developments in healthcare (e.g., growing use of technology) and the changing needs of different patient groups.

Survey goals

The results of this survey will help gaining greater insights into the current ideal standards of the IBD-Nurse practice and its relevance to the daily work of an IBD-Nurse. 

Survey instructions

In this survey, you will be asked to rate a series of topics using a Likert scale. The topics correspond to the original N-ECCO Consensus. The scale range allows you to rate the degree of importance of the topic as well as frequency of application in your daily work. 

Time commitment

We understand how precious your time is. That is why we have included only essential topics, that should take you about 10 minutes in total to complete. Please take your time to read through the details and provide your honest feedback. There are no right or wrong answers.

Thank you 

As a thank you for your participation, all survey participants are invited to submit their email address for an annual lottery drawing of 3 x ECCO Interaction Tickets for the upcoming year (ECCO’26).

Note on privacy

If you decide not to participate in the lottery drawing, this survey is anonymous.
If you submit your name and email address for the lottery drawing, your individual responses remain confidential, and will only be used for research purposes.

Demographics

Why do we ask these questions? These demographic questions confirm that we are engaging with people from different backgrounds. They also allow us to identify the needs of different groups.

 

1. I am:
Female
Male
Non-binary
Prefer not to say
Other: 
2. I am:
< 30 years
30-40 years
41-50 years
51-60 years
> 60 years
3. My country: 

Note: Please, provide the country where you work in. Please select "Other", if you cannot find your country on the list and type it in.

Profession

Why do we ask these questions? These profession related questions give us insight on the setting and focus of your work and allow us to explore the importance of various topics related to the IBD nursing experience.

4. My main role is...:   

Adult IBD-Nurse
Paediatric IBD-Nurse
Gastroenterology nurse who also cares for patients with IBD
Research nurse
Nurse carrying out own research
Other: 

5. I work in the following type of centre:

University hospital
Public hospital
Private hospital
Other:

6. How long have you been working in the field of IBD?

< 1 year
1-5 years
6-10 years
> 10 years
7. How many patients with IBD do you have contact with per week (on average):
< 5 patients
5-15 patients
16-25 patients
26-35 patients
36-45 patients
> 45 patients

8. My main contact with patients with IBD is in the following areas:

Outpatient clinic
Ward (in-patients)
Endoscopy department
Research
Other: 

9. Is specific IBD nursing education available for nurses in your country?

Yes
No

IBD nursing practice

Here we ask you to rate a series of topics relating to the IBD-Nurse role. The topics correspond to the original N-ECCO Consensus. Answers may be provided on a scale. First rate the importance of the topic to the IBD-Nurse role in general, then rate how frequently you apply it in your daily work. 

10. The role of the fundamental IBD-Nurse and the definition and requirements of fundamental IBD nursing.

Fundamental nursing means providing the basic nursing care required to meet the needs of patients with IBD across many settings. It provides a framework of basic knowledge of the diseases and understanding of the key diagnostic strategies and the main medical and surgical options available.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is understanding of IBD definition, diagnosis and treatment options for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

11.   Impact of IBD on patients’ lives.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is the awareness for the IBD nurse about the immediate and long-term physical, social, and emotional impact of the disease on patients’ lives?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

12. Psychological impact of living with IBD.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is understanding psychological impact of living with IBD, including anxiety, depression, and psychological distress in the role of an IBD-Nurse ?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

13. Patient advocacy and person-centered care.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is putting patient advocacy and person-centred care in practice for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

14. Communicating with the patient with IBD.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having an empathic and active listening role (i.e. providing essential IBD-related information and holistic support) for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

15. Knowledge about symptoms in IBD.

Nurses caring for patients with IBD need to be able to identify, acknowledge, and, if possible, provide treatments for symptoms like urgency/incontinence, fatigue, pain and fistulas.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having knowledge about symptoms in IBD for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

16. Knowledge about diet and nutrition.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having knowledge about diet and nutrition in IBD for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

17. Knowledge about intimacy and sexuality in IBD.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having knowledge about intimacy and sexuality in IBD for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

18. Knowledge about complications (excluding extraintestinal manifestations).

Nurses caring for patients with IBD need to be able to identify, acknowledge, and, if possible, provide treatments for complications resulting from the disease.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having knowledge about complications for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

19. Knowledge about extraintestinal manifestations.

Nurses caring for patients with IBD need to be able to identify, acknowledge, and, if possible, provide treatments for complications resulting from the disease.

.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is having knowledge about extraintestinal manifestations for the role of an IBD-Nurse??
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

20. Knowledge about health maintenance.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is being able to identify risk, screen, provide support, and to refer to a specialist, if necessary, for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this fundamental knowledge in your daily work?
1
2
3
4
5
6
7
8
9

21. The role of the Advanced IBD-Nurse and definition, requirements, and skills of advanced IBD nursing.

Advanced IBD nursing refers to nurses who have developed knowledge, skills, research, and expertise in IBD. Advanced IBD nursing care means providing guidance to and supporting patients with IBD who are facing particular situations. The Advanced IBD nurse is responsible for the assessment and provision of evidence-based care planning and treatment evaluation, and who provides practical information, education and emotional support to the patients with IBD and work as a part of the multi-disciplinary team (MDT).

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is understanding the advanced IBD nursing for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

22. The Advanced IBD-Nurse caring for complex patients.

The Advanced IBD-Nurse plays a key role in the MDT and is able to provide direct care as well as holistic support, through providing social, physical, and psychological support in addition to providing education to the patient and their family.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is understanding complex situations for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

23. The Advanced IBD nursing assessment.

The Advanced IBD-Nurse may use biomarkers, imaging, and physical assessment, including endoscopy in the management of patients with IBD. The Advanced IBD-Nurse is also using assessment scales such as IBD Fatigue Scale, IBDQ, Perceived Stress Scale, Harvey Bradshaw when appropriate.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is understanding different assessment tools for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

24. The Advanced IBD nursing role in providing accessibility.

With  Advice Lines and different e-health systems, the Advanced IBD-Nurse offers rapid accessibility to the patients by providing many aspects of care and support, and for assessment, investigation and treatment of an unwell patient.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is the ability to provide Advice Lines and different e-health systems for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

25. The Advanced IBD-Nurse and patient information and education.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is providing education to patients with IBD that is based on evidence, individual needs, preferences and coping ability for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

26. The Advanced IBD-Nurse's role in the planned review, care and follow-up of patients with IBD.

The Advanced IBD-Nurse facilitates follow-up of patients during relapse and in remission, providing a link between the patient and the family doctor, hospital care, and rapid access in the event of care.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is playing a key role in following up with patients during both relapse and remission, acting as a link between the patient, family doctor, and hospital care, while ensuring rapid access in the event of a flare-up for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

27. The Advanced IBD-Nurse’s role in transitional care.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is the role of an IBD-Nurse in the transition process?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

28. The Advanced IBD-Nurse and travelling.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is giving information, support and referral to relevant resources to patients planning to travel for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

29. The Advanced IBD-Nurse concerning pregnancy and fertility.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is supporting both, male and female patients, who are considering/planning pregnancy, for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

30. The Advanced IBD-Nurse in caring for the patient undergoing stoma and ileal–anal pouch formation.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is supporting the patient in the peri-operative period for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

31. The Advanced IBD-Nurse and IBD in elderly patients.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is a nursing assessment of elderly patients for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

32. The Advanced IBD-Nurse and examinations in IBD.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is investigating and interpreting results from different examinations for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

33. The role of the senior IBD-Nurse in mentoring.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is mentoring junior colleagues for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

34. Benefits of an IBD-Nurse.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is providing nurse-led services that are cost-efficient and beneficial to patients with IBD and healthcare providers for the role of an IBD-Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9

35. The Advanced IBD-Nurse and research.

Please rate each question on a 1-9 scale where:

a) importance: 1-3 represents “limited importance”, 4-6 represents “important but not critical”, and 7-9 represents “critical importance”

b) frequency: 1-3 represents “never to rarely”, 4-6 represents “sometimes/occasionally”, and 7-9 represents “frequently to very frequently”

  1 2 3 4 5 6 7 8 9
a) How important is undertaking original research within the field of IBD for the role of an IBD Nurse?
1
2
3
4
5
6
7
8
9
b) How frequently do you use this advanced knowledge in your daily work?
1
2
3
4
5
6
7
8
9
36. Please state here topics, that you are missing in this questionnaire.

37. Please state here other suggestions or thoughts you wish to share.

IBD-Nurse participation in the annual ECCO Congress and awareness of N-ECCO activities

We ask this to better understand what challenges IBD-Nurses face when it comes to attending the annual ECCO Congress and having access to N-ECCO activities and opportunities.
38. Have you ever participated in the annual ECCO Congress?
Yes
No

39. What do you think ECCO could do to promote your participation in the annual ECCO Congress?

Note: Tick all options which apply. 

Support travel funds for attendance.
Help you explore research grants, travel funds, or professional development budgets within your hospital or university.
Enable on-site translation services or real-time translation apps during the congress.
Connect you with colleagues who are fluent in English for assistance with understanding presentations and networking.
Enable tailor-made Agenda, reviewing the congress program and select sessions that directly align with your specific interests and areas of expertise.
Seek your feedback on topics that are relevant to your current role and future career goals.
Facilitate networking events and connecting you with colleagues in your field to learn about their experiences and how the congress has benefited them.
Other:

40. Which N-ECCO activities and publications are you familiar with?

Note: Tick all options which apply. 

N-ECCO Consensus
Nurse IBD Curriculum
IBD Nurse Education Programme
ECCO e-learning platform
N-ECCO School
N-ECCO Network Meeting
N-ECCO Research Forum
N-ECCO Research Grant
N-ECCO Travel Award
N-ECCO School travel bursary
None of the above

ECCO Interaction: Hearts and Minds

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