Psychosocial burden of type 1 and 2 hereditary angioedema: a single-center Canadian cohort study
Open Access
- 29 June 2021
- journal article
- research article
- Published by Springer Science and Business Media LLC in Allergy, Asthma & Clinical Immunology
- Vol. 17 (1), 1-8
- https://doi.org/10.1186/s13223-021-00563-0
Abstract
Background Hereditary angioedema (HAE) is a rare but serious disorder associated with a multifaceted burden of illness including a high prevalence of psychiatric symptoms and impaired health-related quality of life (HRQoL). Despite recent efforts to clarify the psychosocial implications of HAE, important gaps still remain. The aim of this study was to characterize the psychosocial burden associated with HAE types 1 and 2. Methods Type 1 or 2 HAE patients (n = 17), aged 19 years or older, completed the Depression, Anxiety, Stress Scale (DASS-21) and the DSM-5 cross cutting measures to identify psychiatric symptomatology, Angioedema Quality of Life Questionnaire (AE-QoL) and the Short-Form 36-Item Health Survey version 2 (SF-36v2) to assess disease-related and generic HRQoL respectively, and the Work Productivity and Activity Impairment Questionnaire (WPAI) to measure impact on work productivity and daily activities. Data analyses were conducted using SPSS statistical software (Version 25.0; IBM, Armonk, NY). Descriptive statistics were used to summarize continuous demographics and clinical characteristics and outcomes of interest while frequency distributions were used for categorical variables. T tests were used to compare SF-36v2 domain scores to Canadian norms and sex differences in scale scores. Results Depression [DASS-21 score = 6.8 ± 10.2; n = 12 (71%)] anxiety [DASS-21 score = 6.2 ± 8.2; n = 13 (76%)] and stress [DASS-21 score = 10 ± 10.2; n = 13 (76%)] were prevalent. Other psychiatric symptoms warranting inquiry included mania (n = 14, 82.4%), anger (n = 14, 82.4%), sleep disturbances (n = 13, 76.5%), somatic symptoms (n = 11, 64.7%) and impaired personality functioning (n = 9, 52.9%). Mean AE-QoL score was 39 ± 18.2. Mean SF-36v2 domain scores were significantly lower than Canadian normative data for the entire sample (p < 0.05). Impairment in work productivity was minimal; mean activity impairment was 20.6% ± 21.1% [n = 11 (64.7%)]. Female participants reported significantly greater HAE-related stress [DASS; t(15) = − 2.2, p = 0.04], greater HAE-related fears [AEQoL; t(5.6) = − 2.7, p = 0.04), and lower SF-36v2 domain scores than male patients. Conclusions Study findings offer specific, valuable insight into the psychosocial burden of HAE with the potential to improve clinical management of HAE. Best practices for effective management of HAE should include providing holistic care to address the psychosocial and mental health of HAE patients.Keywords
This publication has 29 references indexed in Scilit:
- US Hereditary Angioedema Association Medical Advisory Board 2013 Recommendations for the Management of Hereditary Angioedema Due to C1 Inhibitor DeficiencyThe Journal of Allergy and Clinical Immunology: In Practice, 2013
- Kinin B1 receptors mediate depression-like behavior response in stressed mice treated with systemic E. coli lipopolysaccharideJournal of Neuroinflammation, 2010
- Hereditary angioedema in womenAllergy, Asthma & Clinical Immunology, 2010
- Novel pathogenic mechanism and therapeutic approaches to angioedema associated with C1 inhibitor deficiencyJournal of Allergy and Clinical Immunology, 2009
- Interleukin-1 receptor null mutant mice show decreased anxiety-like behavior and enhanced fear memoryNeuroscience Letters, 2009
- From inflammation to sickness and depression: when the immune system subjugates the brainNature Reviews Neuroscience, 2008
- The short‐form version of the Depression Anxiety Stress Scales (DASS‐21): Construct validity and normative data in a large non‐clinical sampleBritish Journal of Clinical Psychology, 2005
- The Validity and Reproducibility of a Work Productivity and Activity Impairment InstrumentPharmacoEconomics, 1993
- The MOS 36-ltem Short-Form Health Survey (SF-36)Medical Care, 1992
- C1 Inhibitor and Hereditary Angioneurotic EdemaAnnual Review of Immunology, 1988