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Dr. Ijeoma N. Akinwumi ( FMCPaed , MSc. Haemoglobinopathy )

Transition to adult centred SCD care: a call to action presented at 2017 SCSSN conference , Enugu. Dr. Ijeoma N. Akinwumi ( FMCPaed , MSc. Haemoglobinopathy ) Lagos State University College of Medicine/ Teaching Hospital, Ikeja Lagos, Nigeria. ADOLESCENTS: A special population.

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Dr. Ijeoma N. Akinwumi ( FMCPaed , MSc. Haemoglobinopathy )

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  1. Transition to adult centred SCD care: a call to actionpresented at 2017 SCSSN conference, Enugu. Dr.Ijeoma N. Akinwumi (FMCPaed, MSc. Haemoglobinopathy) Lagos State University College of Medicine/ Teaching Hospital, Ikeja Lagos, Nigeria

  2. ADOLESCENTS: A special population Child: 0- <18yrs Adolescent: 10-19yrs issues Youth/ Young person: 14-25yrs Adolescent issues • Physical development > psychological • Identitity crisis & peer pressure • Risk taking behaviour, rebellion • Substance abuse • Unplanned pregnancy

  3. Interplay of adolescence and SCD • Growth retardation • Delayed puberty • Prognathism • Jaundice • Leg ulcers • Avascular necrosis • Stroke • Priapism • Chronic pain • Psychosocial problems

  4. Continuity of care in chronic illness SCD is a lifelong chronic health condition, barring a successful BMT. • Continuity of comprehensive care – imperative, our responsibility • 67 in the past 2 months in my clinic • We have more SCD than any other nation • The rest of the world has clear guidelines • Our National Guidelines mention that transition is necessary • Parents’ handbooks for SCD management give tips useful to enhance transition

  5. We need a plan • Our plan must be co-ordinated • It needs to be representative of Nigeria • It is our responsibility to create and document our plan • We must be ready for the next edition of our national guidelines

  6. I HAVE A PLAN A cross-sectional multicentre study of transition to adult centred sickle cell disease care in Nigeria. AIMS:Describe current practices in transition to adult centred SCD care and identify barriers to adult centred care among adolescents and youth with SCD. Objectives: • Describe patients transition experiences • Identify barriers to transition of adolescents and youth with SCD to adult care • Describe patients’, parents’ and SCD healthcare providers’ perspectives on suggestions for improvement of transition to adult care

  7. Progress report on my plan • Coordinated research • A Nigerian SCD Transition Study group birthed • Ethics review approval has been obtained by 2 paediatricians & 1 public health physician in LASUTH to cover LASUTH, OAUTH Ile-Ife, Massey street children’s hospital, Lagos for SW GPZ • Each zone needs approval from a review board in their zone • Appropriately modified research protocol can be arranged • NHREC form for inter-institutional review board approval + my protocol – copy available today

  8. NIGERIAN SCD TRANSITION STUDY GROUP RESPONSIBILITIES • Search out and disseminate relevant evidence to improve transition practices • Research to provide evidence based interventions to improve transition practices. • Provide guidelines and support for transition to adult SCD care • Audit and strengthen transition services across the country • Advocacy for adolescents and young people LWSCD

  9. JOIN THE NIGERIAN SCD TRANSITION STUDY GROUP TO JOIN, Text/e-mail TRANSITION, your name, name of hospital to me 0803 338 9757/ IJEDIAKU@YAHOO.COM OR • PROF. ADEKILE • DR. ADEGOKE

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