title: Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study.
abstract: BACKGROUND
  Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life.
  
  
  METHODS
  We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire.
  
  
  RESULTS
  Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL.
  
  
  CONCLUSIONS
  Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment.
authors: Department of Haematology & Blood Transfusion, College of Medicine, University of Lagos & Lagos University Teaching Hospital, Lagos, Nigeria.
authors: Titilope A
authors: TA
authors: Adeyemo
authors: Sickle Cell Foundation Nigeria, Lagos, Nigeria.
authors: Oyesola O
authors: OO
authors: Ojewunmi
authors: Department of Paediatrics, Lagos State University Teaching Hospital, Ikeja, Lagos, Nigeria.
authors: Ijeoma N
authors: IN
authors: Diaku-Akinwumi
authors: Department of Biomedical Sciences, Aston University, Birmingham, United Kingdom.
authors: Oluwaseyi C
authors: OC
authors: Ayinde
authors: Department of Haematology & Blood Transfusion, College of Medicine, University of Lagos & Lagos University Teaching Hospital, Lagos, Nigeria.
authors: Alani S
authors: AS
authors: Akanmu
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000523:psychology* / Q000628:therapy; D016022:Case-Control Studies; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D008017:Life Expectancy; D008297:Male; D009549:Nigeria; D010465:Perception; D011379:Prognosis; D011446:Prospective Studies; D011788:Quality of Life; D057545:Social Stigma; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
keywords: adolescent health; health related quality of life; sickle cell disease; stigmatisation