Download A Transition pilot programme for adolescents with sickle cell disease

A Transition pilot programme for
adolescents with sickle cell
disease
Yvonne Duane, Rosena Geoghegan, Helena Conroy and Corrina McMahon
OLCHC Dublin
HAI 16/10/2015
Overview
Introduction
Aims & Objectives
Methods
Findings
Conclusions
Discussion
Aims & Objectives
 Aims:
 Increase participants understanding and knowledge of SCD
 Aid the process of transition to haematology service
 Objectives:
 Assess knowledge of transition process and readiness to
transition
 Improve level of knowledge and understanding
 Facilitate group discussion on relevant topics
 Provide verbal and written information on SCD and transition
Methods
 Database of SCD patients 12 years + reviewed. Over 16 targeted
and randomly divided into 3 groups
 Invitation letters sent out
 Each session lasted 2 hours
 Programme devised by core team members of haemoglobinopathy
team at OLCHC:
 Welcome / warm up exercises – educational presentation – group discussion –
information packs – individual follow-up at clinic
 Measures of SCD knowledge and transition readiness used pre and
post group session.
 Evaluation – each participant completed feedback/evaluation form
at end of group.
Findings
Patient characteristics
 35 young adults with SCD between the ages of 16 years and 18 years were
invited to the group sessions: 15 (43%) attended.
 Reasons given for the others invited not attending sessions was - not wanting to
miss school .
 Age range was from 16.4 -18.9 years
 Gender: 7 female, 8 male
 SCD genotype 14 Hb SS, 1 Hb SC
 11 participants on a disease modification programme
 6 were on a chronic blood transfusion
 5 were on Hydroxyurea
Findings (continued)
SCD knowledge quiz
Results showed a high level of general SCD knowledge among 75% (10)
participants pre attendance at the session.
 3 had correct responses to all questions (25 out of 25)
 6 had 24 correct responses
 1 had 23 correct responses.
 The remaining 5 participants had somewhat poorer levels of general
knowledge about SCD: 2 had 19 correct responses, 2 had 17 correct
responses and 1 had 15 correct responses.
The three most common mistakes were:
• Using an ice pack for pain instead of a heat pack
• Thinking penicillin was used to help get rid of pain
• Unaware that stress or a fever can cause a sickle crisis
Findings (continued)
SCD knowledge quiz
Following the group session there was general improvement in overall SCD
knowledge on this quiz:
 9 increased their scores to 25 out of 25
 3 maintained the same score (25 out of 25)
 3 increased their scores from medium to high levels of knowledge
Incorrect responses/information post group attendance were addressed at
follow-up individual clinic appointments.
Findings (continued)
Transition Checklist – pre needed advice on:
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Who to call in an emergency
Keeping a record of hospital/clinic appointments
The risks of taking drugs and alcohol
Where to get information about SCD
What is transition and why they have to move to adult services
What challenges to expect during transition from child to adult services
Main differences between child and adult services
Knowledge of own medical history
How much exercise is recommended
The tests she/he needs to have
How SCD may change as she/he gets older
Presentation and group discussion addressed these areas resulting in
increased readiness for transition.
Findings (continued)
Themes from Group Discussion
 Most participants were not aware of their type of SCD
 Most did not know their haemoglobin level or its significance
 Many participants did not know what temperature constitutes a fever
 While most knew why they were taking their medications many lacked an
in depth knowledge and so reported adherence was poor
 Many participants on hydroxyurea therapy reported not knowing the
reason why they take it and some reported not taking it everyday.
Feedback
 All participants were invited to complete feedback forms at the end of the
session. 14 of the 15 participants completed a feedback form.
 Feedback was positive and all rated the session highly.
“
“I found it very useful and learned a lot about going to a adult hospital and found the information very helpful”
“I think it was useful as I got to learn more about our condition….I would like to know is how can sickle cell anaemia
affect you when you are pregnant or how you know when your child have sickle cell anaemia”
“I found it very informative and the atmosphere was extremely friendly. It’s better with no parents around because we’re
more comfortable discussing amongst our age group. We should have these more often. Learnt lots about my
haemoglobin”
“some of the information was very useful as I did not know some facts”
“I want to know more about the effect drugs or alcohol has on sickle cell”
“It was really useful because I learned alot concerning my medical condition. However, in addition, I feel like a personal
one-to-one meeting should be made to inform each person of what type of sickle cell they have and their personal
situation”
“need more information about St. James’s-why your moving to St. James’s- difference between this hospital and St.
James’s. The group talk was very helpful”
“It was useful for me because I got to understand more things I didn’t know about SCD”
“first I got lost but I managed to find my way....... I really liked knowing more about the SCD....... Now I know more on the
lifestyle choices, like alcohol and drugs etc.”
“The talk gave me an understanding of everything that I would be required to know as an adult patient”
Conclusions
 Highlights the need for ongoing transition group
education sessions
 Continued quality improvement strategies should be
implemented and measured prospectively among
adolescents with SCD to evaluate the impact of the
programme in changing and improving care during the
transition process from paediatric to adult haematology
services
Thank you for listening.
Discussion / Questions?