Measuring quality of life of primary antibody deficiency patients using a disease-specific health-related quality of life questionnaire for common variable ... View Full Text


Ontology type: schema:ScholarlyArticle     


Article Info

DATE

2019-12

AUTHORS

Jintana B. Andersen, Knut Midttun, Kristin J. B. Feragen

ABSTRACT

BACKGROUND: 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... »

PAGES

15

References to SciGraph publications

Identifiers

URI

http://scigraph.springernature.com/pub.10.1186/s41687-019-0101-x

DOI

http://dx.doi.org/10.1186/s41687-019-0101-x

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1112391360

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/30806830


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