Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study

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 s...

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Bibliographic Details
Published in:Pediatric blood & cancer 2015-07, Vol.62 (7), p.1245-1251
Main Authors: Adeyemo, Titilope A., Ojewunmi, Oyesola O., Diaku-Akinwumi, Ijeoma N., Ayinde, Oluwaseyi C., Akanmu, Alani S.
Format: Article
Language:English
Subjects:
Adolescent
adolescent health
Anemia, Sickle Cell - psychology
Anemia, Sickle Cell - therapy
Case-Control Studies
Cross-Sectional Studies
Female
Follow-Up Studies
health related quality of life
Hematology
Hospitalization - statistics & numerical data
Humans
Life Expectancy
Male
Nigeria
Oncology
Pediatrics
Perception
Prognosis
Prospective Studies
Quality of Life
sickle cell disease
Social Stigma
Socioeconomic Factors
stigmatisation
Surveys and Questionnaires
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Summary: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. Pediatr Blood Cancer 2015;62:1245–1251. © 2015 Wiley Periodicals, Inc.
ISSN:1545-5009
1545-5017
DOI:10.1002/pbc.25503