Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management
Autor(a) principal: | |
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Data de Publicação: | 2020 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://hdl.handle.net/1822/62450 |
Resumo: | Background. Hemophilia is a rare disorder characterized by spontaneous bleeding, with pain being a critical aspect. However, a systematic assessment of hemophilia-related pain in Portugal has never been conducted. Objective. To understand the pain experience among Portuguese people with hemophilia (PWH) by describing its prevalence, characteristics, and impact and uncovering intervention needs in the realm of hemophilia-related pain care. Methods. A cross-sectional observational survey, with age-adapted versions of questions concerning pain, emotional distress, and quality of life, was answered by 104 adults, 21 children/teenagers (10-17 years), and 19 children (1-9 years). Results. Pain was reported by 82 (78.8%) adults, 16 (76.2%) children/teenagers, and 13 (68.4%) children, with 65 (62.5%), 13 (61.9%), and eight (42.1%) of them reporting pain lasting more than three months, respectively. The mean number of pain locations (SD) was 5.23 (3.95) for adults, 4.13 (3.48) for children/teenagers, and 3.15 (1.99) for children age 1-9 years, with lower limbs pain causing the greatest negative impact. More frequent pain-triggering factors were physical effort/movements (61, 74.4%) for adults and hemarthrosis for younger groups (children/teenagers: 14, 87.5%; children: 9, 69.2%). Bleeds yielded the highest mean pain intensity (adults: M [SD] = 5.67 [2.09]; children/teenagers: M [SD] = 5.69 [2.15]). Adults with pain revealed more anxiety (odds ratio [OR] =1.698, P= 0.003) and depression (OR = 1.961, P= 0.025) and lower quality of life (OR = 0.928, P= 0.001). Conclusions. The current findings highlight the high prevalence, duration, and frequency of pain at all ages, its potentially simultaneous acute and chronic nature, its likelihood to affect multiple locations concurrently, and its detrimental impact. Important insights concerning intervention needs are presented, ultimately contributing to the improvement of hemophilia-related pain management and patient care. |
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Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain managementHemophiliaHemarthrosisChronic arthropathyEmotional DistressHealth-Related Quality of LifeCiências Médicas::Medicina BásicaScience & TechnologyBackground. Hemophilia is a rare disorder characterized by spontaneous bleeding, with pain being a critical aspect. However, a systematic assessment of hemophilia-related pain in Portugal has never been conducted. Objective. To understand the pain experience among Portuguese people with hemophilia (PWH) by describing its prevalence, characteristics, and impact and uncovering intervention needs in the realm of hemophilia-related pain care. Methods. A cross-sectional observational survey, with age-adapted versions of questions concerning pain, emotional distress, and quality of life, was answered by 104 adults, 21 children/teenagers (10-17 years), and 19 children (1-9 years). Results. Pain was reported by 82 (78.8%) adults, 16 (76.2%) children/teenagers, and 13 (68.4%) children, with 65 (62.5%), 13 (61.9%), and eight (42.1%) of them reporting pain lasting more than three months, respectively. The mean number of pain locations (SD) was 5.23 (3.95) for adults, 4.13 (3.48) for children/teenagers, and 3.15 (1.99) for children age 1-9 years, with lower limbs pain causing the greatest negative impact. More frequent pain-triggering factors were physical effort/movements (61, 74.4%) for adults and hemarthrosis for younger groups (children/teenagers: 14, 87.5%; children: 9, 69.2%). Bleeds yielded the highest mean pain intensity (adults: M [SD] = 5.67 [2.09]; children/teenagers: M [SD] = 5.69 [2.15]). Adults with pain revealed more anxiety (odds ratio [OR] =1.698, P= 0.003) and depression (OR = 1.961, P= 0.025) and lower quality of life (OR = 0.928, P= 0.001). Conclusions. The current findings highlight the high prevalence, duration, and frequency of pain at all ages, its potentially simultaneous acute and chronic nature, its likelihood to affect multiple locations concurrently, and its detrimental impact. Important insights concerning intervention needs are presented, ultimately contributing to the improvement of hemophilia-related pain management and patient care.This work was supported by the Novo Nordisk HERO Research Grant 2015. PRP is the recipient of a postdoctoral grant (SFRH/BPD/103529/2014) from the Portuguese Foundation of Science and Technology.Oxford University PressUniversidade do MinhoPinto, Patrícia Jesus RibeiroParedes, Ana CristinaAlmeida, Armando20202020-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttps://hdl.handle.net/1822/62450engPinto, P. R., Paredes, A. C., & Almeida, A. (2019). Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management. Pain Medicine.1526-23751526-463710.1093/pm/pny30930812031https://academic.oup.com/painmedicine/advance-article-abstract/doi/10.1093/pm/pny309/5366314info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-21T12:52:28Zoai:repositorium.sdum.uminho.pt:1822/62450Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T19:51:36.578949Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
title |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
spellingShingle |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management Pinto, Patrícia Jesus Ribeiro Hemophilia Hemarthrosis Chronic arthropathy Emotional Distress Health-Related Quality of Life Ciências Médicas::Medicina Básica Science & Technology |
title_short |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
title_full |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
title_fullStr |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
title_full_unstemmed |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
title_sort |
Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first portuguese survey and implications for pain management |
author |
Pinto, Patrícia Jesus Ribeiro |
author_facet |
Pinto, Patrícia Jesus Ribeiro Paredes, Ana Cristina Almeida, Armando |
author_role |
author |
author2 |
Paredes, Ana Cristina Almeida, Armando |
author2_role |
author author |
dc.contributor.none.fl_str_mv |
Universidade do Minho |
dc.contributor.author.fl_str_mv |
Pinto, Patrícia Jesus Ribeiro Paredes, Ana Cristina Almeida, Armando |
dc.subject.por.fl_str_mv |
Hemophilia Hemarthrosis Chronic arthropathy Emotional Distress Health-Related Quality of Life Ciências Médicas::Medicina Básica Science & Technology |
topic |
Hemophilia Hemarthrosis Chronic arthropathy Emotional Distress Health-Related Quality of Life Ciências Médicas::Medicina Básica Science & Technology |
description |
Background. Hemophilia is a rare disorder characterized by spontaneous bleeding, with pain being a critical aspect. However, a systematic assessment of hemophilia-related pain in Portugal has never been conducted. Objective. To understand the pain experience among Portuguese people with hemophilia (PWH) by describing its prevalence, characteristics, and impact and uncovering intervention needs in the realm of hemophilia-related pain care. Methods. A cross-sectional observational survey, with age-adapted versions of questions concerning pain, emotional distress, and quality of life, was answered by 104 adults, 21 children/teenagers (10-17 years), and 19 children (1-9 years). Results. Pain was reported by 82 (78.8%) adults, 16 (76.2%) children/teenagers, and 13 (68.4%) children, with 65 (62.5%), 13 (61.9%), and eight (42.1%) of them reporting pain lasting more than three months, respectively. The mean number of pain locations (SD) was 5.23 (3.95) for adults, 4.13 (3.48) for children/teenagers, and 3.15 (1.99) for children age 1-9 years, with lower limbs pain causing the greatest negative impact. More frequent pain-triggering factors were physical effort/movements (61, 74.4%) for adults and hemarthrosis for younger groups (children/teenagers: 14, 87.5%; children: 9, 69.2%). Bleeds yielded the highest mean pain intensity (adults: M [SD] = 5.67 [2.09]; children/teenagers: M [SD] = 5.69 [2.15]). Adults with pain revealed more anxiety (odds ratio [OR] =1.698, P= 0.003) and depression (OR = 1.961, P= 0.025) and lower quality of life (OR = 0.928, P= 0.001). Conclusions. The current findings highlight the high prevalence, duration, and frequency of pain at all ages, its potentially simultaneous acute and chronic nature, its likelihood to affect multiple locations concurrently, and its detrimental impact. Important insights concerning intervention needs are presented, ultimately contributing to the improvement of hemophilia-related pain management and patient care. |
publishDate |
2020 |
dc.date.none.fl_str_mv |
2020 2020-01-01T00:00:00Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://hdl.handle.net/1822/62450 |
url |
https://hdl.handle.net/1822/62450 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Pinto, P. R., Paredes, A. C., & Almeida, A. (2019). Pain Prevalence, Characteristics, and Impact Among People with Hemophilia: Findings from the First Portuguese Survey and Implications for Pain Management. Pain Medicine. 1526-2375 1526-4637 10.1093/pm/pny309 30812031 https://academic.oup.com/painmedicine/advance-article-abstract/doi/10.1093/pm/pny309/5366314 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Oxford University Press |
publisher.none.fl_str_mv |
Oxford University Press |
dc.source.none.fl_str_mv |
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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