The impact of hereditary angioedema on quality of life and family planning decisions

• Published in: International journal of psychiatry in medicine Vol. 54; no. 6; pp. 377 - 394
• Main Authors: Kuman Tunçel, Özlem, Gökmen, Nihal Mete, Demir, Ece, Gülbahar, Okan, Pırıldar, Şebnem
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01-11-2019; Sage Publications Ltd
• Subjects: Adult; Aged; Angioedema; Angioedemas, Hereditary - psychology; Anxiety; Anxiety - psychology; Cross-Sectional Studies; Decision Making - physiology; Edema; Family Planning Services; Female; Humans; Male; Mental depression; Middle Aged; Quality of life; Quality of Life - psychology; Social support; Surveys and Questionnaires; Young Adult; hereditary angioedema; medical illness; family planning; anxiety sensitivity; comorbidity; C1-inhibitor function level; marriage; biopsychosocial; depression; quality of life
• ISSN: 0091-2174; 1541-3527
• DOI: 10.1177/0091217419837068

Objective
Hereditary angioedema is a serious disease with unpredictable attacks. It has an impact on patients’ health-related quality of life. This study aimed to assess the quality of life of the hereditary angioedema patients and to investigate the relationship between quality of life and demographic, clinical, laboratory, and psychiatric parameters.
Method
A semistructured face-to-face interview, Hamilton depression rating scale, and Hamilton anxiety rating scale were performed by a psychiatrist. Participants completed Medical Outcomes Study Short Form-36, Revised Form of the Multidimensional Scale of Perceived Social Support, Anxiety Sensitivity Index-3, and Adult Separation Anxiety Questionnaire. Patients’ complement results were recorded, and clinical data obtained by interview were cross-checked from patients’ files.
Results
In 33 hereditary angioedema patients, subscales of the Study Short Form-36, except for physical functioning, vitality, and mental health were significantly lower compared with population norms. Quality of life scores were found to be correlated with depression, anxiety, anxiety sensitivity, separation anxiety, perceived social support, perceived discrimination, perceived limitation, treatment naïve C1-Inhibitor function, and C1q level. Physical role functioning scores were better in the patients using attenuated androgens (p = 0.006, t = −3.027). Hereditary angioedema contributed to the marital problems and childbearing decisions of the patients.
Conclusion
Hereditary angioedema results in significant impairment in quality of life of the patients and has an impact on family life and life style of the patients. In case of depressive and/or anxiety symptoms, patients should be referred to psychiatrists for better quality of life. Higher levels of C1-inhibitor function and C1q seem to correlate with better quality of life; these needs to be further studied.