Clinical Characteristics and Quality of Life in a Cohort of Polish Pediatric Patients with Hereditary Angioedema
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Study Group General Characteristics
3.2. Everyday Problems from Parents’ Perspective
3.3. Quality of life—PedsQLTM 4.0
3.3.1. General Quality of Life among HAE Children (Parents’ Proxy Report)
3.3.2. Correlation between Parent-Reported QoL and Disease Activity
3.3.3. Comparison of QoL Reported by HAE Adolescents and Their Parents
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Characteristic | The Study Group (Children) | Parents |
---|---|---|
Age, years Mean Min, max | 10.6 5, 16 | 40.4 28, 54 |
Sex, n (%) Female Male | 12 (57%) 9 (43%) | 17 (81%) 4 (19%) |
Place of residence Village Small city City 1 | 8 (38%) 4 (19%) 9 (43%) | 8 (38%) 4 (19%) 9 (43%) |
Characteristic | The HAE Group (Children) |
---|---|
Type of HAE, n (%) Type 1 Type 2 | 18 (86%) 3 (14%) |
Positive family history, n (%) yes no | 18 (86%) 3 (14%) |
Age at disease onset, years Mean Min, Max | 4.9 1, 14 |
Time from first symptoms to diagnosis 1, years Mean Min, Max | 2.6 0, 8 |
Health Care-Dependent Area | Independent of Health Care QoL—Mean |
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Area | QoL—Mean (SD 1) HAE Group | QoL—Mean (SD 1) Controls | p |
---|---|---|---|
Physical | 83.78 (21.82) | 91.96 (9.25) | 0.58 |
Emotional | 71.43 (27.21) | 82.62 (14.72) | 0.25 |
Social | 86.67 (20.39) | 96.19 (7.23) | 0.08 |
School-related | 84.25 (22.09) | 88.81 (12.74) | 0.47 |
Psychosocial | 79.84 (22.4) | 89.21 (8.88) | 0.41 |
Total QoL | 81.21 (21.41) | 90.18 (8.24) | 0.35 |
Group I | Group II | Group III | ||
---|---|---|---|---|
Area | Mean (SD) | Mean (SD) | Mean (SD) | p |
Physical | 96.35 (6.08) | 80.62 (15.37) | 50 (23.52) | <0.001 |
Emotional | 82.08 (17.25) | 73 (13.42) | 37.5 (32.02) | 0.004 |
Social | 93.75 (11.1) | 89 (13.41) | 62.5 (33.04) | 0.019 |
School-related | 89.17 (13.79) | 87 (13.03) | 51.25 (28.69) | 0.004 |
Psychosocial | 88.33 (12.73) | 83 (15.78) | 50.42 (30.95) | 0.006 |
Total QoL | 91.12 (9.31) | 82.17 (14.12) | 50.27 (28.32) | 0.001 |
Children | Parents | ||
---|---|---|---|
Area | Mean (SD) | Mean (SD) | p |
Physical | 74.22 (27.89) | 75.39 (30.41) | 0.937 |
Emotional | 70.00 (33.06) | 63.75 (37.3) | 0.728 |
Social | 81.87 (26.58) | 81.87 (29.63) | 0.858 |
School-related | 78.75 (30.56) | 76.25 (31.37) | 0.874 |
Psychosocial | 76.87 (29.55) | 73.96 (32.37) | 0.854 |
Total QoL | 75.95 (28.35) | 74.46 (30.89) | 0.921 |
QoL Reported from Parents | Symptomatic Children | Asymptomatic Children | |
---|---|---|---|
Area | Mean (SD) | Mean (SD) | p |
Physical | 51.56 (25.32) | 99.22 (1.56) | 0.0329 |
Emotional | 45 (42.43) | 82.5 (22.55) | 0.1934 |
Social | 66.25 (37.05) | 97.5 (5.0) | 0.1932 |
School-related | 60 (38.08) | 92.5 (11.9) | 0.2018 |
Psychosocial | 57.08 (38.91) | 90.83 (13.09) | 0.1987 |
Total QoL | 55.16 (34.11) | 93.75 (8.34) | 0.1154 |
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Piotrowicz-Wójcik, K.; Bulanda, M.; Czarnobilska, E.; Porebski, G. Clinical Characteristics and Quality of Life in a Cohort of Polish Pediatric Patients with Hereditary Angioedema. Children 2024, 11, 237. https://doi.org/10.3390/children11020237
Piotrowicz-Wójcik K, Bulanda M, Czarnobilska E, Porebski G. Clinical Characteristics and Quality of Life in a Cohort of Polish Pediatric Patients with Hereditary Angioedema. Children. 2024; 11(2):237. https://doi.org/10.3390/children11020237
Chicago/Turabian StylePiotrowicz-Wójcik, Katarzyna, Malgorzata Bulanda, Ewa Czarnobilska, and Grzegorz Porebski. 2024. "Clinical Characteristics and Quality of Life in a Cohort of Polish Pediatric Patients with Hereditary Angioedema" Children 11, no. 2: 237. https://doi.org/10.3390/children11020237