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Bridging the Gap: Transition to Adult-Centered SCD Care

Explore the challenges and solutions in transitioning adolescents with sickle cell disease to adult care. Join the Nigerian SCD Transition Study Group in advocating for improved practices. Contact us to get involved now!

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Bridging the Gap: Transition to Adult-Centered SCD Care

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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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