Ontology type: schema:ScholarlyArticle
2019-12
AUTHORSJintana B. Andersen, Knut Midttun, Kristin J. B. Feragen
ABSTRACTBACKGROUND: Common variable immunodeficiency (CVID) and other primary antibody deficiencies (PAD) are a heterogeneous group of > 300 congenital disorders affecting the immune system. Until recently, efforts to measure health-related quality of life (QoL) in PAD patients have utilised generic QoL tools and disease-specific tools for other conditions. Still, the full impact of the disease is probably not understood. We evaluated the performance of the CVID_QoL, a novel disease-specific QoL instrument for adults with CVID, on Norwegian PAD patients and compared the results to those of the generic WHOQOL-BREF. METHODS: Respondents were recruited through the Norwegian Centre for Rare Disorders' patient database. Included patients fulfilled the following criteria (all three): 1.) Age ≥18 years, 2.) a PAD diagnosis, 3.) currently on immunoglobulin therapy. The CVID_QoL is a 32-item questionnaire. Global CVID_QoL scores were compared between Norwegian PAD patients and Italian CVID patients. RESULTS: In total, 83 PAD patients filled out the CVID_QoL, 63% had CVID, 76% were females. 32 patients filled out the WHOQOL-BREF. Feasibility was high (<1% missing). Internal consistency for the emotional- (Cronbach's α-value = 0.91) and relational functioning (α = 0.77) subscales was high, but questionable for the gastrointestinal and skin symptoms subscale (α = 0.66). Convergent validity varied from weak to strong (range 0.3-0.8). Floor and ceiling effects were present. CONCLUSIONS: Although many disease-specific characteristics are probably shared with CVID and other PAD, the CVID_QoL captures some, but not all, dimensions of PAD patients' QoL. More evaluations of the CVID_QoL's performance in different contexts are needed. More... »
PAGES15
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DOIhttp://dx.doi.org/10.1186/s41687-019-0101-x
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"description": "BACKGROUND: Common variable immunodeficiency (CVID) and other primary antibody deficiencies (PAD) are a heterogeneous group of >\u2009300 congenital disorders affecting the immune system. Until recently, efforts to measure health-related quality of life (QoL) in PAD patients have utilised generic QoL tools and disease-specific tools for other conditions. Still, the full impact of the disease is probably not understood. We evaluated the performance of the CVID_QoL, a novel disease-specific QoL instrument for adults with CVID, on Norwegian PAD patients and compared the results to those of the generic WHOQOL-BREF.\nMETHODS: Respondents were recruited through the Norwegian Centre for Rare Disorders' patient database. Included patients fulfilled the following criteria (all three): 1.) Age \u226518 years, 2.) a PAD diagnosis, 3.) currently on immunoglobulin therapy.\u00a0The CVID_QoL is a 32-item questionnaire. Global CVID_QoL scores were compared between Norwegian PAD patients and Italian CVID patients.\nRESULTS: In total, 83 PAD patients filled out the CVID_QoL, 63% had CVID, 76% were females. 32 patients filled out the WHOQOL-BREF.\u00a0Feasibility was high (<1% missing). Internal consistency for the emotional- (Cronbach's \u03b1-value\u00a0= 0.91) and relational functioning (\u03b1\u00a0= \u00a00.77) subscales was high, but questionable for the gastrointestinal and skin symptoms subscale (\u03b1\u00a0= \u00a00.66). Convergent validity varied from weak to strong (range 0.3-0.8).\u00a0Floor and ceiling effects were present.\nCONCLUSIONS: Although many disease-specific characteristics are probably shared with CVID and other PAD, the CVID_QoL captures some, but not all, dimensions of PAD patients' QoL. More evaluations of the CVID_QoL's performance in different contexts are needed.",
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},
"sdSource": "s3://com-uberresearch-data-dimensions-target-20181106-alternative/cleanup/v134/2549eaecd7973599484d7c17b260dba0a4ecb94b/merge/v9/a6c9fde33151104705d4d7ff012ea9563521a3ce/jats-lookup/v90/0000000368_0000000368/records_78947_00000001.jsonl",
"type": "ScholarlyArticle",
"url": "https://link.springer.com/10.1186%2Fs41687-019-0101-x"
}
]Download the RDF metadata as: json-ld nt turtle xml License info
JSON-LD is a popular format for linked data which is fully compatible with JSON.
curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1186/s41687-019-0101-x'
N-Triples is a line-based linked data format ideal for batch operations.
curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1186/s41687-019-0101-x'
Turtle is a human-readable linked data format.
curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1186/s41687-019-0101-x'
RDF/XML is a standard XML format for linked data.
curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1186/s41687-019-0101-x'
This table displays all metadata directly associated to this object as RDF triples.
244 TRIPLES
21 PREDICATES
77 URIs
21 LITERALS
9 BLANK NODES