1. 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

2. Overview  Introduction  Aims & Objectives  Methods  Findings  Conclusions  Discussion

3. 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

4. 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.

5. 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

6. 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

7. 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.

8. Findings (continued) Transition Checklist – pre needed advice on:  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.

9. 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.

10. “ “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” I want to know more about the effect drugs or alcohol has on sickle cell Some of the information was very useful as I did not know some facts It was really useful because I learned a lot 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 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 Very informative I found it very useful and learned a lot about going to an 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 It was useful for me because I got to understand more things I didn’t know about SCD It was useful for me because I got to understand more things I didn’t know about SCD The talk gave me an understanding of everything that I would be required to know as an adult patient The talk gave me an understanding of everything that I would be required to know as an adult patient This session was a useful refresher on how to manage our sickle cell and a useful overview about it 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. 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.

11. 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

12. Thank you for listening. Discussion / Questions?