Table 3.

PREM mapped to IBD UK standards where applicable

Item no.	AWARE‐IBD PREM	IBD standards
The Care Team
1	I know who the different people are in the Care Team looking after me	Statement 1.1 Patients should be cared for by a defined IBD multidisciplinary team led by a named consultant adult or paediatric gastroenterologist. Statement 1.9 Clear information about IBD, the local IBD service and patient organizations should be accessible in outpatient clinics, wards, endoscopy and day‐care areas
2	I know how to contact the Care Team between appointments if I need to	Statement 2.4 All patients should be provided with a point of contact and clear information about pathways and timescales while awaiting the outcome of tests and investigations. Statement 4.2 All patients with IBD should be provided with clear information to support self‐management and early intervention in the case of a flare. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.
3	I can get a response from the Care Team by the end of the next working day when experiencing a flare	Statement 4.3 Rapid access to specialist advice should be available to patients to guide early flare intervention, including access to a telephone/email advice line with response by the end of the next working day.
4	I feel that the Care Team has enough time for me when I talk to them
What Matters to Me
5	I know the person on the Care Team who coordinates my care	Statement 1.1 Patients should be cared for by a defined IBD multidisciplinary team led by a named consultant adult or paediatric gastroenterologist. Statement 1.9 Clear information about IBD, the local IBD service and patient organizations should be accessible in outpatient clinics, wards, endoscopy and day‐care areas. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.
6	The Care Team understands the impact my Crohn's or Colitis has on my life	Statement 3.2 After diagnosis, all patients should have full assessment of their disease, nutritional status, bone health and mental health, with baseline infection screen, to develop a personalized care plan. Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account.
7	My concerns are taken seriously when I talk to the Care Team
8	The Care Team ask how I feel while they are treating me
9	I feel I can approach the Care Team to discuss any concerns about my treatment and its effects on my life	Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account. Statement 5.4 Patients with IBD being considered for surgery should be provided with information in a format and language they can easily understand to support shared decision‐making and informed consent and offered psychological support. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.
10	The Care Team understands what matters to me (in healthcare and beyond)	Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.
11	I have the confidence to express my needs and concerns with the Care Team
12	I feel that the Care Team do their best to give me the care I need	Statement 1.2 Multidisciplinary team meetings should take place regularly to discuss appropriate patients.
13	I am involved in decisions about my care and treatment	Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line
14	I feel I have a good relationship with my Care Team
15	I am treated with dignity and respect by the Care Team
16	I usually see the same person from the Care Team at each appointment (either face‐to‐face, telephone or online).
17	The Care Team offers me appointments in a format that suits me, such as face to face, by telephone or video call
18	There is good coordination between the different people involved in my care and treatment: (1) Within my Care Team (e.g., doctors, IBD nurse specialists, surgeons, dietitians)	Statement 5.1 Patients should have access to coordinated surgical and medical clinical expertise, including regular combined or parallel clinics with a specialist colorectal surgeon (paediatric colorectal surgeon where appropriate) and IBD gastroenterologist. Statement 1.2 Multidisciplinary team meetings should take place regularly to discuss appropriate patients.
	(2) Between my Care Team and other teams in the hospital that I may be in contact with (e.g., rheumatology, dermatology, obstetrics)	Statement 1.1 Patients should be cared for by a defined IBD multidisciplinary team led by a named consultant adult or paediatric gastroenterologist.
	(3) Between my Care Team and my GP Practice	Statement 3.6 GPs should be informed of new diagnoses and the care plan that has been agreed within 48 h. Statement 7.3 Clear protocols should be in place for the supply, monitoring and review of medication across primary and secondary care settings. Statement 7.5 Any reviews and changes of treatment in primary or secondary care should be clearly recorded and communicated to all relevant parties within 48 h.
	(4) Between my Care Team and other healthcare professionals
19	The Care Team will refer me to other services if needed (e.g., mental health services)	Statement 3.2 After diagnosis, all patients should have full assessment of their disease, nutritional status, bone health and mental health, with baseline infection screen, to develop a personalized care plan. Statement 5.7 Patients and parents/carers should be provided with information about postoperative care before discharge, including wound and stoma care, and offered psychological support. Statement 6.8 On admission, patients with IBD should have an assessment of nutritional status, mental health and pain management using validated tools and be referred to services and support as appropriate.
20	In general, I am able to understand all the information the Care Team gives me
21	Thinking about the last time I was given information by the Care Team about my care and treatment: (1) It was given in a way that was easy to understand (2) It met my needs (3) It was relevant to me and my needs (4) I had the opportunity to discuss and ask questions about it (5) I liked the way it was given (e.g., verbal or on paper)	Statement 1.9 Clear information about IBD, the local IBD service and patient organizations should be accessible in outpatient clinics, wards, endoscopy and day care areas. Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.
22	The Care Team has recommended or directed me to good, reliable information resources, such as charities and the NHS website	Statement 3.5 Patients should be signposted to information and support from patient organizations. Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
23	The Care Team informs me about opportunities to take part in research studies and clinical trials	Statement 1.17 IBD services should encourage and facilitate involvement in multidisciplinary research through national or international IBD research projects and registries.
24	The frequency of my routine appointments is acceptable	Statement 7.7 All IBD patients should be reviewed at agreed intervals by an appropriate healthcare professional and relevant disease information recorded. Statement 7.8 A mechanism should be in place to ensure that colorectal cancer surveillance is carried out in line with national guidance and that patients and parents/carers are aware of the process.
25	I am able to easily access toilet facilities at the hospital	Statement 6.2 Where en suite rooms are not available, inpatients with IBD should have a minimum of one easily accessible toilet per three beds on a ward.
26	I know how to provide feedback on the service, should I want to	Statement 1.7 Patients and parents/carers should have a voice and direct involvement in the development of the service.
Living with Crohn's or Colitis
27	I know what care and treatment options are available for my Crohn's or Colitis	Statement 1.13 Patients should be fully informed about the benefits and risks of, and the alternatives to, immunomodulator and biological therapies, including surgery. Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account.
28	I understand how Crohn's or Colitis affects me physically	Statement 1.9 Clear information about IBD, the local IBD service and patient organizations should be accessible in outpatient clinics, wards, endoscopy and day care areas. Statement 3.5 Patients should be signposted to information and support from patient organizations.
29	In general, I feel that I can mentally cope with my Crohn's or Colitis
30	I feel able to discuss my mental health with the Care Team if I want to
31	I can do all the tasks that my care team ask me to do at home (such as manage my diet, lifestyle, treatment)	Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line. Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
32	I remember to do all of the tasks that my care team ask me to do (such as take tablets, keep a food diary, etc.)	Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line. Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
33	I am able to keep track of my symptoms	Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
34	I feel it is important to take an active role in my own healthcare	Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
35	I get enough support from the people around me to help me live with Crohn's or Colitis (such as friends, family or people at work)
36	I can access support from the IBD community to help me live with Crohn's or Colitis, if I want to (such as charities, online groups, support groups)	Statement 1.9 Clear information about IBD, the local IBD service and patient organizations should be accessible in outpatient clinics, wards, endoscopy and day care areas. Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line. Statement 7.2 Patients should be supported in self‐management, as appropriate, through referral or signposting to education, groups and support.
37	I believe that my care and treatment will benefit me	Statement 3.3 Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account.
38	I have a personalized written care plan	Statement 7.1 A personalized care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.

Abbreviations: IBD, inflammatory bowel disease; PREM, Patient‐Reported Experience Measure.