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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
Working Group Members
Dr Deborah Christie (Chair)
Board Observers
Neil Musgrove (Parent representative)
Dr Justin Warner (Clinical lead for NPDA)
Kate Fazakerly (Parent representative)
Dr Jeremy Allgrove (Consultant Endocrinologist)
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)
Objective
To develop a valid and reliable PREM for young people with
diabetes.
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!
National Paediatric Diabetes Audit (NPDA)
3 year project commissioned & sponsored by 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.
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
Involving young people enables active
involvement in service provision
Involve YP in:
commissioning,
development &
evaluation
of services’
To ensure services
are:
• Relevant
• Accessible
• Meet users’ needs
Children's Act 2004
Participants & Method
• Semi-structured interview
78 young people with TI
Diabetes
Quantitative
6 -18 years

4 diabetes clinics:
Birmingham
Rated Importance of parent’s
questions

Waiting time

Clinic staff

Managing Blood glucose,
sickness, exercise, school

Information on technologies
Southampton
UCLH
Qualitative
Harrogate

What they most like/dislike about
coming to clinic

What they want to be different
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%)
Qualitative Results: Thematic analysis
Learning new information
Processing and
understanding clinical
results
Multiple members of
staff and leaflets
Observing change
and the effects.
Meeting other young
people
Age appropriate
Waiting times and
activities
Clinic environment
Communication
Clinic structure
Learning New Information
Processing &
Understanding clinical
results
‘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)
“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)
Multiple members
of staff & leaflets
Meeting other
young people
“I like that you can get different advice from
different members of staff like nurses
dieticians.” (Clara, 16)
“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)
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)
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)
Constructing a young person PREM
• Quotations
were used to create
statements
•Preserved important aspects
“They talk to
me and at my
level”
The team know how
to talk to people my
age and understand
my situation
13 questions were created from the 16 themes.
Cognitive Interviewing
• 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
explores whether the
questions ask what we
are intending to ask
1. I get helpful advice
2. My HbA1c is used to find
positive and useful solutions
7. I can get the advice I need from
my hospital 24 hours/9-5/ by
telephone
3. Clinic appointments are well
organised and give me enough
time
8. I have opportunity to meet and
talk to other young people like
myself
4. Opportunity to feedback clinic
experiences and improvements
9. My team know how to talk to me
5. The environment is right for my
age and a pleasant place to wait.
6. I am supported in becoming
more independent with my
diabetes
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
Where we are now…
• Young
person PREM provided to 185 paediatric
diabetes units in England and Wales
September 2013 alongside the repeat parent
version.
• Online option being piloted.
•Piloting a Patient Reported Outcome Measure
(PROM) for 2014
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)