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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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Published in: | Pediatric blood & cancer 2015-07, Vol.62 (7), p.1245-1251 |
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description | 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. |
doi_str_mv | 10.1002/pbc.25503 |
format | article |
fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_1681266636</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>1681266636</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4613-bec57af6072c35ef4c7962c9c7db6b7cd9162754528251d6a5f37b46425a4ac63</originalsourceid><addsrcrecordid>eNp1kctu1DAUhi0EoqWw4AWQJTawSOtLbGfYtSPoFKpyUYGl5dgng1tPktoJZV6DJ64z084CiZWto-__dOwfoZeUHFJC2FFf20MmBOGP0D4VpSgEoerx7k5me-hZSlcZlURUT9EeExUlXFT76O8CTBh-4QjBDODwzWiCH9a4a3DwDWDTOtxDtNAPvmuncRr8cmUGn8xm4ltsXBcgWWiHlEO_fbvEtz47k7fXAbCFELDzCUyCCb_wS4jevMPH2MYuJZzATioTsnt06-foSWNCghf35wH6_uH95XxRnH8-PZsfnxe2lJQXNVihTCOJYpYLaEqrZpLZmVWulrWybkYlU_kHWMUEddKIhqu6lCUTpjRW8gP0ZuvtY3czQhr0yqdpWdNCNyZNZUWZlJJP6Ot_0KtujHnjDUUUqRQrM_V2S22eFaHRffQrE9eaEj0VpXNRelNUZl_dG8d6BW5HPjSTgaMtcOsDrP9v0l9O5g_KYpvwaYA_u4SJ11oqroT-eXGqFx_pD_b12yd9ye8AqmWtCQ</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1680708724</pqid></control><display><type>article</type><title>Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study</title><source>Wiley</source><creator>Adeyemo, Titilope A. ; Ojewunmi, Oyesola O. ; Diaku-Akinwumi, Ijeoma N. ; Ayinde, Oluwaseyi C. ; Akanmu, Alani S.</creator><creatorcontrib>Adeyemo, Titilope A. ; Ojewunmi, Oyesola O. ; Diaku-Akinwumi, Ijeoma N. ; Ayinde, Oluwaseyi C. ; Akanmu, Alani S.</creatorcontrib><description>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.</description><identifier>ISSN: 1545-5009</identifier><identifier>EISSN: 1545-5017</identifier><identifier>DOI: 10.1002/pbc.25503</identifier><identifier>PMID: 25810358</identifier><language>eng</language><publisher>United States: Blackwell Publishing Ltd</publisher><subject>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</subject><ispartof>Pediatric blood & cancer, 2015-07, Vol.62 (7), p.1245-1251</ispartof><rights>2015 Wiley Periodicals, Inc.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4613-bec57af6072c35ef4c7962c9c7db6b7cd9162754528251d6a5f37b46425a4ac63</citedby><cites>FETCH-LOGICAL-c4613-bec57af6072c35ef4c7962c9c7db6b7cd9162754528251d6a5f37b46425a4ac63</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpbc.25503$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpbc.25503$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>315,786,790,27957,27958,50923,51032</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25810358$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Adeyemo, Titilope A.</creatorcontrib><creatorcontrib>Ojewunmi, Oyesola O.</creatorcontrib><creatorcontrib>Diaku-Akinwumi, Ijeoma N.</creatorcontrib><creatorcontrib>Ayinde, Oluwaseyi C.</creatorcontrib><creatorcontrib>Akanmu, Alani S.</creatorcontrib><title>Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study</title><title>Pediatric blood & cancer</title><addtitle>Pediatr Blood Cancer</addtitle><description>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.</description><subject>Adolescent</subject><subject>adolescent health</subject><subject>Anemia, Sickle Cell - psychology</subject><subject>Anemia, Sickle Cell - therapy</subject><subject>Case-Control Studies</subject><subject>Cross-Sectional Studies</subject><subject>Female</subject><subject>Follow-Up Studies</subject><subject>health related quality of life</subject><subject>Hematology</subject><subject>Hospitalization - statistics & numerical data</subject><subject>Humans</subject><subject>Life Expectancy</subject><subject>Male</subject><subject>Nigeria</subject><subject>Oncology</subject><subject>Pediatrics</subject><subject>Perception</subject><subject>Prognosis</subject><subject>Prospective Studies</subject><subject>Quality of Life</subject><subject>sickle cell disease</subject><subject>Social Stigma</subject><subject>Socioeconomic Factors</subject><subject>stigmatisation</subject><subject>Surveys and Questionnaires</subject><issn>1545-5009</issn><issn>1545-5017</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><recordid>eNp1kctu1DAUhi0EoqWw4AWQJTawSOtLbGfYtSPoFKpyUYGl5dgng1tPktoJZV6DJ64z084CiZWto-__dOwfoZeUHFJC2FFf20MmBOGP0D4VpSgEoerx7k5me-hZSlcZlURUT9EeExUlXFT76O8CTBh-4QjBDODwzWiCH9a4a3DwDWDTOtxDtNAPvmuncRr8cmUGn8xm4ltsXBcgWWiHlEO_fbvEtz47k7fXAbCFELDzCUyCCb_wS4jevMPH2MYuJZzATioTsnt06-foSWNCghf35wH6_uH95XxRnH8-PZsfnxe2lJQXNVihTCOJYpYLaEqrZpLZmVWulrWybkYlU_kHWMUEddKIhqu6lCUTpjRW8gP0ZuvtY3czQhr0yqdpWdNCNyZNZUWZlJJP6Ot_0KtujHnjDUUUqRQrM_V2S22eFaHRffQrE9eaEj0VpXNRelNUZl_dG8d6BW5HPjSTgaMtcOsDrP9v0l9O5g_KYpvwaYA_u4SJ11oqroT-eXGqFx_pD_b12yd9ye8AqmWtCQ</recordid><startdate>201507</startdate><enddate>201507</enddate><creator>Adeyemo, Titilope A.</creator><creator>Ojewunmi, Oyesola O.</creator><creator>Diaku-Akinwumi, Ijeoma N.</creator><creator>Ayinde, Oluwaseyi C.</creator><creator>Akanmu, Alani S.</creator><general>Blackwell Publishing Ltd</general><general>Wiley Subscription Services, Inc</general><scope>BSCLL</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7T5</scope><scope>7TK</scope><scope>7TO</scope><scope>8FD</scope><scope>FR3</scope><scope>H94</scope><scope>K9.</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope></search><sort><creationdate>201507</creationdate><title>Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study</title><author>Adeyemo, Titilope A. ; Ojewunmi, Oyesola O. ; Diaku-Akinwumi, Ijeoma N. ; Ayinde, Oluwaseyi C. ; Akanmu, Alani S.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4613-bec57af6072c35ef4c7962c9c7db6b7cd9162754528251d6a5f37b46425a4ac63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Adolescent</topic><topic>adolescent health</topic><topic>Anemia, Sickle Cell - psychology</topic><topic>Anemia, Sickle Cell - therapy</topic><topic>Case-Control Studies</topic><topic>Cross-Sectional Studies</topic><topic>Female</topic><topic>Follow-Up Studies</topic><topic>health related quality of life</topic><topic>Hematology</topic><topic>Hospitalization - statistics & numerical data</topic><topic>Humans</topic><topic>Life Expectancy</topic><topic>Male</topic><topic>Nigeria</topic><topic>Oncology</topic><topic>Pediatrics</topic><topic>Perception</topic><topic>Prognosis</topic><topic>Prospective Studies</topic><topic>Quality of Life</topic><topic>sickle cell disease</topic><topic>Social Stigma</topic><topic>Socioeconomic Factors</topic><topic>stigmatisation</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Adeyemo, Titilope A.</creatorcontrib><creatorcontrib>Ojewunmi, Oyesola O.</creatorcontrib><creatorcontrib>Diaku-Akinwumi, Ijeoma N.</creatorcontrib><creatorcontrib>Ayinde, Oluwaseyi C.</creatorcontrib><creatorcontrib>Akanmu, Alani S.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>Neurosciences Abstracts</collection><collection>Oncogenes and Growth Factors Abstracts</collection><collection>Technology Research Database</collection><collection>Engineering Research Database</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Pediatric blood & cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Adeyemo, Titilope A.</au><au>Ojewunmi, Oyesola O.</au><au>Diaku-Akinwumi, Ijeoma N.</au><au>Ayinde, Oluwaseyi C.</au><au>Akanmu, Alani S.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study</atitle><jtitle>Pediatric blood & cancer</jtitle><addtitle>Pediatr Blood Cancer</addtitle><date>2015-07</date><risdate>2015</risdate><volume>62</volume><issue>7</issue><spage>1245</spage><epage>1251</epage><pages>1245-1251</pages><issn>1545-5009</issn><eissn>1545-5017</eissn><notes>ArticleID:PBC25503</notes><notes>istex:8F036414D449BCF8AA068EDA07EEEBA7E582C9BD</notes><notes>ark:/67375/WNG-HJ1V2QRK-T</notes><notes>ObjectType-Article-1</notes><notes>SourceType-Scholarly Journals-1</notes><notes>ObjectType-Feature-2</notes><notes>content type line 23</notes><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. Pediatr Blood Cancer 2015;62:1245–1251. © 2015 Wiley Periodicals, Inc.</abstract><cop>United States</cop><pub>Blackwell Publishing Ltd</pub><pmid>25810358</pmid><doi>10.1002/pbc.25503</doi><tpages>7</tpages></addata></record> |
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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 |
title | Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study |
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