Disease burden for patients with primary immunodeficiency diseases identified at reference hospitals in Guanajuato, Mexico
In addition to the deleterious effect on health, there is considerable economic and psychosocial morbidity associated with primary immunodeficiency diseases (PID). Also, the cost of a late diagnosis frequently results in a heavy disease burden on the patient. The objective of this study was to colle...
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| creator | Guaní-Guerra, Eduardo Jiménez-Romero, Ana Isabel García-Ramírez, Ulises Noel Velázquez-Ávalos, José Manuel Martínez-Guzmán, Edgar Sandoval-Ramírez, Eunice Camacho-Meza, Ignacio |
| description | In addition to the deleterious effect on health, there is considerable economic and psychosocial morbidity associated with primary immunodeficiency diseases (PID). Also, the cost of a late diagnosis frequently results in a heavy disease burden on the patient. The objective of this study was to collect and analyze data on patients with PID in the state of Guanajuato in Mexico, to indirectly estimate the burden of the disease.
An observational, longitudinal, and comparative study was conducted. A total of 44 patients were included and grouped according to the updated classification of PID.
The median time elapsed from the onset of symptoms to the reference and diagnosis by a tertiary hospital was of 2.17 (IQR = 6.44) years. Before diagnosis, the number of hospitalizations/year per patient was 0.86 (IQR = 2.28), the number of visit to emergency room/year per patient was 0.92 (IQR = 1.77), the number of doctor's visits/year per patient was 15 (IQR = 11.25), whereas the school/work absence days per patient were reported in 52.72 (IQR = 56.35) days per year. After diagnosis, 20 patients (45.45%) received IVIG replacement therapy, and all of them presented a significant improvement (p |
| doi_str_mv | 10.1371/journal.pone.0175867 |
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An observational, longitudinal, and comparative study was conducted. A total of 44 patients were included and grouped according to the updated classification of PID.
The median time elapsed from the onset of symptoms to the reference and diagnosis by a tertiary hospital was of 2.17 (IQR = 6.44) years. Before diagnosis, the number of hospitalizations/year per patient was 0.86 (IQR = 2.28), the number of visit to emergency room/year per patient was 0.92 (IQR = 1.77), the number of doctor's visits/year per patient was 15 (IQR = 11.25), whereas the school/work absence days per patient were reported in 52.72 (IQR = 56.35) days per year. After diagnosis, 20 patients (45.45%) received IVIG replacement therapy, and all of them presented a significant improvement (p <0.05) in all the mentioned variables. Characteristically, even when patients with PID received IVIG, there was still an important disease burden when comparing them against healthy controls. Complications secondary to PID were detected in 19 patients (43.18%). The reported overall mortality rate was 6.82% (n = 3).
We were able to indirectly estimate an important disease burden in patients with PID; which is considered to be preventable, at least in part, with effective interventions like health planning, research, collaboration with primary care providers, and generation of policies and practices, in order to improve the quality of life and care of families with PID.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0175867</identifier><identifier>PMID: 28448570</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adolescent ; Adult ; Asthma ; Biology and Life Sciences ; Case-Control Studies ; Child ; Child, Preschool ; Chronic illnesses ; Comparative studies ; Complications ; Cost of Illness ; Data processing ; Diagnosis ; Disease control ; Emergency medical care ; Emergency medical services ; Emergency Service, Hospital ; Female ; Food allergies ; Health care ; Health planning ; Hospitalization ; Hospitals ; Humans ; Immunodeficiency ; Immunoglobulins ; Immunoglobulins, Intravenous - therapeutic use ; Immunologic Deficiency Syndromes - diagnosis ; Immunologic Deficiency Syndromes - drug therapy ; Immunologic Deficiency Syndromes - economics ; Immunologic Deficiency Syndromes - mortality ; Immunology ; Infant ; Internet ; Intravenous administration ; Longitudinal Studies ; Male ; Medicine and Health Sciences ; Mexico ; Morbidity ; Occupational health ; Patients ; Pediatrics ; People and places ; Pneumonia ; Primary immunodeficiencies ; Quality of life ; Social Sciences ; Studies ; Survival Rate ; Tertiary Care Centers ; Young Adult</subject><ispartof>PloS one, 2017-04, Vol.12 (4), p.e0175867-e0175867</ispartof><rights>2017 Guaní-Guerra et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2017 Guaní-Guerra et al 2017 Guaní-Guerra et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c526t-6801f45e5a5f5bfaea171b62952e0ad0b2f434effc45567f1cdd02d9edf11a683</citedby><cites>FETCH-LOGICAL-c526t-6801f45e5a5f5bfaea171b62952e0ad0b2f434effc45567f1cdd02d9edf11a683</cites><orcidid>0000-0001-6494-5511</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407621/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5407621/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,2096,2915,23845,27901,27902,53766,53768,79343,79344</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/28448570$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Guaní-Guerra, Eduardo</creatorcontrib><creatorcontrib>Jiménez-Romero, Ana Isabel</creatorcontrib><creatorcontrib>García-Ramírez, Ulises Noel</creatorcontrib><creatorcontrib>Velázquez-Ávalos, José Manuel</creatorcontrib><creatorcontrib>Martínez-Guzmán, Edgar</creatorcontrib><creatorcontrib>Sandoval-Ramírez, Eunice</creatorcontrib><creatorcontrib>Camacho-Meza, Ignacio</creatorcontrib><title>Disease burden for patients with primary immunodeficiency diseases identified at reference hospitals in Guanajuato, Mexico</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>In addition to the deleterious effect on health, there is considerable economic and psychosocial morbidity associated with primary immunodeficiency diseases (PID). Also, the cost of a late diagnosis frequently results in a heavy disease burden on the patient. The objective of this study was to collect and analyze data on patients with PID in the state of Guanajuato in Mexico, to indirectly estimate the burden of the disease.
An observational, longitudinal, and comparative study was conducted. A total of 44 patients were included and grouped according to the updated classification of PID.
The median time elapsed from the onset of symptoms to the reference and diagnosis by a tertiary hospital was of 2.17 (IQR = 6.44) years. Before diagnosis, the number of hospitalizations/year per patient was 0.86 (IQR = 2.28), the number of visit to emergency room/year per patient was 0.92 (IQR = 1.77), the number of doctor's visits/year per patient was 15 (IQR = 11.25), whereas the school/work absence days per patient were reported in 52.72 (IQR = 56.35) days per year. After diagnosis, 20 patients (45.45%) received IVIG replacement therapy, and all of them presented a significant improvement (p <0.05) in all the mentioned variables. Characteristically, even when patients with PID received IVIG, there was still an important disease burden when comparing them against healthy controls. Complications secondary to PID were detected in 19 patients (43.18%). The reported overall mortality rate was 6.82% (n = 3).
We were able to indirectly estimate an important disease burden in patients with PID; which is considered to be preventable, at least in part, with effective interventions like health planning, research, collaboration with primary care providers, and generation of policies and practices, in order to improve the quality of life and care of families with PID.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Asthma</subject><subject>Biology and Life Sciences</subject><subject>Case-Control Studies</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Chronic illnesses</subject><subject>Comparative studies</subject><subject>Complications</subject><subject>Cost of Illness</subject><subject>Data processing</subject><subject>Diagnosis</subject><subject>Disease control</subject><subject>Emergency medical care</subject><subject>Emergency medical services</subject><subject>Emergency Service, Hospital</subject><subject>Female</subject><subject>Food allergies</subject><subject>Health care</subject><subject>Health planning</subject><subject>Hospitalization</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Immunodeficiency</subject><subject>Immunoglobulins</subject><subject>Immunoglobulins, Intravenous - therapeutic use</subject><subject>Immunologic Deficiency Syndromes - diagnosis</subject><subject>Immunologic Deficiency Syndromes - drug therapy</subject><subject>Immunologic Deficiency Syndromes - economics</subject><subject>Immunologic Deficiency Syndromes - mortality</subject><subject>Immunology</subject><subject>Infant</subject><subject>Internet</subject><subject>Intravenous administration</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>Medicine and Health Sciences</subject><subject>Mexico</subject><subject>Morbidity</subject><subject>Occupational health</subject><subject>Patients</subject><subject>Pediatrics</subject><subject>People and places</subject><subject>Pneumonia</subject><subject>Primary immunodeficiencies</subject><subject>Quality of life</subject><subject>Social Sciences</subject><subject>Studies</subject><subject>Survival Rate</subject><subject>Tertiary Care Centers</subject><subject>Young 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burden for patients with primary immunodeficiency diseases identified at reference hospitals in Guanajuato, Mexico</title><author>Guaní-Guerra, Eduardo ; Jiménez-Romero, Ana Isabel ; García-Ramírez, Ulises Noel ; Velázquez-Ávalos, José Manuel ; Martínez-Guzmán, Edgar ; Sandoval-Ramírez, Eunice ; Camacho-Meza, Ignacio</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c526t-6801f45e5a5f5bfaea171b62952e0ad0b2f434effc45567f1cdd02d9edf11a683</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Asthma</topic><topic>Biology and Life Sciences</topic><topic>Case-Control Studies</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Chronic illnesses</topic><topic>Comparative studies</topic><topic>Complications</topic><topic>Cost of Illness</topic><topic>Data processing</topic><topic>Diagnosis</topic><topic>Disease 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diseases identified at reference hospitals in Guanajuato, Mexico</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2017-04-27</date><risdate>2017</risdate><volume>12</volume><issue>4</issue><spage>e0175867</spage><epage>e0175867</epage><pages>e0175867-e0175867</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>In addition to the deleterious effect on health, there is considerable economic and psychosocial morbidity associated with primary immunodeficiency diseases (PID). Also, the cost of a late diagnosis frequently results in a heavy disease burden on the patient. The objective of this study was to collect and analyze data on patients with PID in the state of Guanajuato in Mexico, to indirectly estimate the burden of the disease.
An observational, longitudinal, and comparative study was conducted. A total of 44 patients were included and grouped according to the updated classification of PID.
The median time elapsed from the onset of symptoms to the reference and diagnosis by a tertiary hospital was of 2.17 (IQR = 6.44) years. Before diagnosis, the number of hospitalizations/year per patient was 0.86 (IQR = 2.28), the number of visit to emergency room/year per patient was 0.92 (IQR = 1.77), the number of doctor's visits/year per patient was 15 (IQR = 11.25), whereas the school/work absence days per patient were reported in 52.72 (IQR = 56.35) days per year. After diagnosis, 20 patients (45.45%) received IVIG replacement therapy, and all of them presented a significant improvement (p <0.05) in all the mentioned variables. Characteristically, even when patients with PID received IVIG, there was still an important disease burden when comparing them against healthy controls. Complications secondary to PID were detected in 19 patients (43.18%). The reported overall mortality rate was 6.82% (n = 3).
We were able to indirectly estimate an important disease burden in patients with PID; which is considered to be preventable, at least in part, with effective interventions like health planning, research, collaboration with primary care providers, and generation of policies and practices, in order to improve the quality of life and care of families with PID.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>28448570</pmid><doi>10.1371/journal.pone.0175867</doi><orcidid>https://orcid.org/0000-0001-6494-5511</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | PloS one, 2017-04, Vol.12 (4), p.e0175867-e0175867 |
| issn | 1932-6203 1932-6203 |
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| source | Public Library of Science (PLoS) Journals Open Access; MEDLINE; DOAJ Directory of Open Access Journals; EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Adolescent Adult Asthma Biology and Life Sciences Case-Control Studies Child Child, Preschool Chronic illnesses Comparative studies Complications Cost of Illness Data processing Diagnosis Disease control Emergency medical care Emergency medical services Emergency Service, Hospital Female Food allergies Health care Health planning Hospitalization Hospitals Humans Immunodeficiency Immunoglobulins Immunoglobulins, Intravenous - therapeutic use Immunologic Deficiency Syndromes - diagnosis Immunologic Deficiency Syndromes - drug therapy Immunologic Deficiency Syndromes - economics Immunologic Deficiency Syndromes - mortality Immunology Infant Internet Intravenous administration Longitudinal Studies Male Medicine and Health Sciences Mexico Morbidity Occupational health Patients Pediatrics People and places Pneumonia Primary immunodeficiencies Quality of life Social Sciences Studies Survival Rate Tertiary Care Centers Young Adult |
| title | Disease burden for patients with primary immunodeficiency diseases identified at reference hospitals in Guanajuato, Mexico |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-02-01T13%3A18%3A13IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_plos_&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Disease%20burden%20for%20patients%20with%20primary%20immunodeficiency%20diseases%20identified%20at%20reference%20hospitals%20in%20Guanajuato,%20Mexico&rft.jtitle=PloS%20one&rft.au=Guan%C3%AD-Guerra,%20Eduardo&rft.date=2017-04-27&rft.volume=12&rft.issue=4&rft.spage=e0175867&rft.epage=e0175867&rft.pages=e0175867-e0175867&rft.issn=1932-6203&rft.eissn=1932-6203&rft_id=info:doi/10.1371/journal.pone.0175867&rft_dat=%3Cproquest_plos_%3E1990012663%3C/proquest_plos_%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=1990012663&rft_id=info:pmid/28448570&rft_doaj_id=oai_doaj_org_article_d6dbcb67250a47b1a353e64a4a3dd2ae&rfr_iscdi=true |