Titilope A Adeyemo1, Oyesola O Ojewunmi2, Ijeoma N Diaku-Akinwumi3, Oluwaseyi C Ayinde4, Alani S Akanmu1. 1. Department of Haematology & Blood Transfusion, College of Medicine, University of Lagos & Lagos University Teaching Hospital, Lagos, Nigeria. 2. Sickle Cell Foundation Nigeria, Lagos, Nigeria. 3. Department of Paediatrics, Lagos State University Teaching Hospital, Ikeja, Lagos, Nigeria. 4. Department of Biomedical Sciences, Aston University, Birmingham, United Kingdom.
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. PROCEDURE: 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.
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. PROCEDURE: 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: Ann T Farrell; Julie Panepinto; Ankit A Desai; Adetola A Kassim; Jeffrey Lebensburger; Mark C Walters; Daniel E Bauer; Rae M Blaylark; Donna M DiMichele; Mark T Gladwin; Nancy S Green; Kathryn Hassell; Gregory J Kato; Elizabeth S Klings; Donald B Kohn; Lakshmanan Krishnamurti; Jane Little; Julie Makani; Punam Malik; Patrick T McGann; Caterina Minniti; Claudia R Morris; Isaac Odame; Patricia Ann Oneal; Rosanna Setse; Poornima Sharma; Shalini Shenoy Journal: Blood Adv Date: 2019-12-10
Authors: Anna M Hood; Lori E Crosby; Eva Hanson; Lisa M Shook; Jeffrey D Lebensburger; Avi Madan-Swain; Megan M Miller; Zina Trost Journal: Ethn Health Date: 2020-09-08 Impact factor: 2.732