Developing a National Patient Reported Experience Measure for Young People with Diabetes

1. Developing a National Patient Reported Experience Measure for Young People with Diabetes Dr Deborah Christie Consultant Clinical Psychologist Honorary Reader in paediatric and adolescent psychology, Adele Hoffman Visiting Professor in Adolescent Heath and Medicine & Isabella Girling Assistant Clinical Psychologist

2. Dr Deborah Christie (Chair) Neil Musgrove (Parent representative) Kate Fazakerly (Parent representative) Prof. Peter Hindmarsh (Consultant Endocrinologist) Dr Nicola Trevelyan (Consultant Endocrinologist) Dr Shakeel Rahman (Consultant Endocrinologist) Emma Day/Judith Campbell (CNS) Gavin Terry (DUK) Anna Aseieva /Sion Morris (Project manager) Dr Michael Soljak (Data analysis) Board Observers Dr Justin Warner (Clinical lead for NPDA) Dr Jeremy Allgrove (Consultant Endocrinologist) Working Group Members

3. To develop a valid and reliable PREM for young people with diabetes. Objective

4. Outcomes improve when patients comment upon their encounters • Feedback enables services to • Document patients experiences • Monitor performance • Ensure patient focused care • Empower patients • Compare care with other services • IMPROVE!

5. National Paediatric Diabetes Audit (NPDA) • 3 year project commissioned & sponsoredby Healthcare Quality Improvement Partnership (HQIP) • Delivered by Royal College of Paediatrics and Child Health (RCPCH). • Inter-disciplinary working group set up in December 2011 to collect: • Experience of 25, 000 children and families from 185 paediatric diabetes units (PDUs) across England and Wales.

6. PREM for parents and carers • Consultation with parents from 4 diabetes services and Children with Diabetes conference and online group • PREM sent to 185 diabetes services • 170 diabetes teams provided data • 13,118 PREMs returned (53%) • Results • Waiting time 76.5% seen within 30 minutes • Diabetes management > 83% received adequate advice. • Consultation time Adequate time to answer questions from most professionals • Overall Experience 74% rated their clinic 9 – 10 • 24% rated their clinic 5 - 8 • 2% rated 4 or less

7. Involving young people enables activeinvolvement in service provision • To ensure services are: • Relevant • Accessible • Meet users’ needs Involve YP in: commissioning, development & evaluation of services’ Children's Act 2004

8. 78 young people with TI Diabetes 6 -18 years 4 diabetes clinics: Birmingham Southampton UCLH Harrogate Participants & Method • Semi-structured interview Quantitative • Rated Importance of parent’s questions • Waiting time • Clinic staff • Managing Blood glucose, sickness, exercise, school • Information on technologies • Qualitative • What they most like/dislike about coming to clinic • What they want to be different

9. Quantitative results • All areas important to parents rated as important by over two thirds of young people. • Most important aspect of clinic experience • How to manage high and low blood glucose (82%) • Least important aspect of clinic experience • Being seen on your own (35%)

10. Qualitative Results: Thematic analysis Multiple members of staff and leaflets Processing and understanding clinical results Meeting other young people Observing change and the effects. Age appropriate Waiting times and activities Clinic environment

11. Learning New Information ‘I like talking to doctor, I find it fun and interesting when they talk to me about diabetes… I like learning new things,’ (Alice, 10) Processing & Understanding clinical results “Satisfaction of good Hba1c which isn’t normally the case… Get told off for not writing down sugars (and a) bad Hba1c” (Tom, 13) Observing change & the effects “How good my bloods are to see if been doing well…How I have been doing overall and it being explained to me” (Molly, 15) “I like that you can get different advice from different members of staff like nurses dieticians.” (Clara, 16) Multiple members of staff & leaflets “I’d get two people the same age to get to know each other. I would do fun activities so people get to know each other. I would like this because then I would learn how others cope and if they had any tips.”(Ben, 11) Meeting other young people

12. Clinic Structure “Waiting too long.” (Sam, 10) Waiting times and clinics “I would have more videogames to play with. I would also like toys more for my age, those ones are girly and babyish.” (David 11) Clinic Environment “like seeing same staff, don’t like inconsistency.” (Nyla, 16) “Its cleaner here, everything is new and modern and nice to sit in.” (Hussian, 17)

13. Communication “People here are friendly, they find out my status of health. I like the doctor’s attitude, it makes me feel comfortable to talk to them. I think they have a really good approach for people my age“ (Hasina, 17) “Other nurses rushing past is scary, feels silly asking questions that the Doctor might think is silly but is important to me.” (Ceyda, 14) “They treat you like the expert here, you know what is best because you know your body. They make you feel comfortable... Its different they really listen… They give me all the information but let me make my own decisions. I can change my pump and make decisions on my own which helps me be independent and look after myself, not like old hospital I wasn’t allowed to do anything without asking.” (Caitlin 17) “They talk at your level and they get to know me.” (Josh, 16)

14. Constructing a young person PREM • Quotations were used to create statements • Preserved important aspects The team know how to talk to people my age and understand my situation “They talk to me and at my level” 13 questions were created from the 16 themes.

15. 6 young people 11-17yrs, 4 female Discussed ease of Understanding Appropriateness of language Response options Reviewed questions to Reword or alter the question. Reviewed by the PREM working group to produce the final questions Cognitive Interviewing Cognitive interviewing explores whether the questions ask what we are intending to ask

16. I get helpful advice My HbA1c is used to find positive and useful solutions Clinic appointments are well organised and give me enough time Opportunity to feedback clinic experiences and improvements The environment is right for my age and a pleasant place to wait. I am supported in becoming more independent with my diabetes 7. I can get the advice I need from my hospital 24 hours/9-5/ by telephone 8. I have opportunity to meet and talk to other young people like myself 9. My team know how to talk to me 10. understand my situation 11. concentrate on finding solutions rather than on any previous difficulties 12. I feel heard, respected and understood On a 1 to 10 scale, how likely is it that you would recommend this clinic to a friend or another family with a child who has diabetes? 0 1 2 3 4 5 6 7 8 9 10 Not likely at all Extremely likely

17. Where we are now… • Young person PREM provided to 185 paediatric diabetes units in England and WalesSeptember 2013 alongside the repeat parent version. • Online option being piloted. • Piloting a Patient Reported Outcome Measure (PROM) for 2014

18. Future steps • Dig deeper into patients’ experiences… Hear the story behind the numbers • A well-told story can be powerful and inspirational. Storytelling can engage patients and employees in the mission to deliver world-class care (Merlino and Raman, 2013)