scholarly journals Prophylactic Treatment in Hereditary Angioedema Is Associated with Reduced Anxiety in Patients in Leipzig, Germany

Author(s):  
Julia Zarnowski ◽  
Marie Rabe ◽  
Paula Kage ◽  
Jan-Christoph Simon ◽  
Regina Treudler

<b><i>Background:</i></b> Hereditary angioedema (HAE) is associated with relevant disease-related burden. We aimed at investigating prevalence of depression and anxiety in patients with HAE in Leipzig, Germany. <b><i>Methods:</i></b> Questionnaire-based evaluation of medical history, Angioedema Control Test (AECT), Angioedema Quality of Life Questionnaire (AE-QoL), Generalized Anxiety Disorder Scale-7 (GAD-7), and Hospital Anxiety and Depression Scale (HADS). <b><i>Results:</i></b> Thirty-seven patients with HAE were included (31 females, mean age 49.6 ± 17.5 years). A mean diagnostic delay between first symptoms and correct diagnosis of 14.2 ± 14.5 years was detected. Patients aged &#x3c;50 years (<i>n</i> = 18) had been diagnosed significantly earlier with HAE than older patients (<i>p</i> = &#x3c;0.001). In 6 patients (16.2%), unnecessary medical interventions were performed and 14 patients (43.8%) reported at least 1 HAE-related death of a family member. Psychological stress was the most common triggering factor (96.2%). HADS scores revealed depression in 5/37 patients (13.5%) and anxiety in 16/37 (43.2%), GAD-7 score indicated anxiety in 9/36 (25%) participants. Patients receiving long-term prophylactic treatment (<i>n</i> = 17, 45.9%) showed significantly better disease control (AECT; <i>p</i> = &#x3c;0.001) and quality of life (AE-QoL; <i>p</i> = &#x3c;0.001) compared to those with on-demand treatment only. Patients with long-term prophylactic treatment showed significantly lower scores for anxiety and depression at GAD-7 (<i>p</i> = 0.011) and HADS (anxiety: <i>p</i> = 0.021; depression: <i>p</i> = 0.008). In 5 patients, treatment regime was changed as AECT score indicated insufficient disease control. Subsequently, we measured significant improvement of quality of life (AE-QoL, <i>p</i> = 0.04) and disease control (AECT; <i>p</i> = 0.032). <b><i>Conclusion:</i></b> Anxiety was a frequent burden in our study group and showed a significant association with low disease control. Our data indicate that prophylactic HAE treatment can improve psychosocial burden of HAE.

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
William R. Lumry ◽  
◽  
Bruce Zuraw ◽  
Marco Cicardi ◽  
Timothy Craig ◽  
...  

Abstract Background Long-term prophylaxis with subcutaneous C1-inhibitor (C1-INH[SC]; HAEGARDA, CSL Behring) in patients with hereditary angioedema (HAE) due to C1-INH deficiency (C1-INH-HAE) was evaluated in an open-label extension follow-up study to the international, double-blind, placebo-controlled COMPACT study. The current analysis evaluated patient-reported health-related quality of life (HRQoL) data from 126 patients in the open-label extension study randomized to treatment with C1-INH(SC) 40 IU/kg (n = 63) or 60 IU/kg (n = 63) twice weekly for 52 weeks. HRQoL was evaluated at the beginning of the open-label study and at various time points using the European Quality of Life-5 Dimensions Questionnaire (EQ-5D), the Hospital Anxiety and Depression Scale (HADS), the Work Productivity and Activity Impairment Questionnaire (WPAI), and the Treatment Satisfaction Questionnaire for Medication. The disease-specific Angioedema Quality of Life Questionnaire (AE-QoL) and HAE quality of life questionnaire (HAE-QoL) instruments were administered in a subset of patients. Statistical significance was determined by change-from-baseline 95% confidence intervals (CIs) excluding zero. No adjustment for multiplicity was done. Results Mean baseline EQ-5D scores (Health State Value, 0.90; Visual Analog Scale, 81.32) were slightly higher (better) than United States population norms (0.825, 80.0, respectively) and mean HADS anxiety (5.48) and depression (2.88) scores were within “normal” range (0–7). Yet, patients using C1-INH(SC) 60 IU/kg demonstrated significant improvement from baseline to end-of-study on the EQ-5D Health State Value (mean change [95% CI], 0.07 [0.01, 0.12] and Visual Analog Scale (7.45 [3.29, 11.62]). In the C1-INH(SC) 60 IU/kg group, there were significant improvements in the HADS anxiety scale (mean change [95% CI], − 1.23 [− 2.08, − 0.38]), HADS depression scale (− 0.95 [− 1.57, − 0.34]), and WPAI-assessed presenteeism (mean change [95% CI], − 23.33% [− 34.86, − 11.81]), work productivity loss (− 26.68% [− 39.92, − 13.44]), and activity impairment (− 16.14% [− 26.36, − 5.91]). Clinically important improvements were achieved in ≥ 25% of patients for all domains except WPAI-assessed absenteeism (which was very low at baseline). Mean AE-QoL total score by visit ranged from 13.39 to 17.89 (scale 0–100; lower scores = less impairment). Mean HAE-QoL global scores at each visit (115.7–122.3) were close to the maximum (best) possible score of 135. Conclusions Long-term C1-INH(SC) replacement therapy in patients with C1-INH-HAE leads to significant and sustained improvements in multiple measures of HRQoL. Trial registration A Study to Evaluate the Long-term Clinical Safety and Efficacy of Subcutaneously Administered C1-esterase Inhibitor in the Prevention of Hereditary Angioedema, NCT02316353. Registered December 12, 2014, https://clinicaltrials.gov/ct2/show/NCT02316353.


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Joan Mendivil ◽  
Ryan Murphy ◽  
Marie de la Cruz ◽  
Ellen Janssen ◽  
Henrik Balle Boysen ◽  
...  

Abstract Background Hereditary angioedema (HAE) is a rare, debilitating, genetic disease characterized by unpredictable, recurrent, and potentially fatal swelling of the skin and mucous membranes. We conducted a noninterventional, cross-sectional, web-based survey of patients with a self-reported diagnosis of HAE type 1/2 in Australia, Austria, Canada, France, Germany, Spain, Switzerland, and the United Kingdom to gain a comprehensive real-world understanding of the characteristics of HAE and its burden from the perspective of the patient. The survey included questions on clinical and demographic characteristics, burden of disease, and treatment. Instruments used to measure patient-reported outcomes included the Angioedema Quality of Life questionnaire (AE-QoL), 12-Item Short-Form Health Survey (SF-12v2), Angioedema Control Test (AECT), Hospital Anxiety and Depression Scale (HADS), and Work Productivity and Impairment questionnaire (WPAI). Data were analyzed with descriptive statistics. Results A total of 242 patients (67.4% female; mean [range] age 43.8 [18–92] years) completed the survey. The mean (SD) age at first symptoms was 11.5 (8.9) years, while diagnosis occurred at 20.8 (13.2) years. Patients reported a mean (SD) of 12.5 (14.1) attacks in the past 6 months. The most recent attack occurred within the past month in 79.7% of patients; most were of moderate severity, 6.6% affected the larynx, 21.9% lasted ≥ 3 days, and 76.4% were treated with on-demand medication. Hospitalizations and emergency/urgent care visits were highest for patients with more attacks. At the time of the survey, 62.4% of patients were using long-term prophylaxis, including 34.4% using androgens. Moderate to severe anxiety and depression were reported in 38.0% and 17.4% of patients, respectively, as measured using the HADS. The severity of anxiety and depression was associated with poorer quality of life and productivity, measured using the AECT (mean overall score 8.00 [moderate perceived disease control]), AE-QoL, WPAI, and SF-12v2. Scores for AECT, AE-QoL, and WPAI were also worse with a higher number of attacks. Conclusions This survey study of a broad international sample of patients with HAE showed that despite the availability of on-demand treatment and long-term prophylaxis for the prevention of attacks, patients across a wide geographical area continue to have high disease activity, likely due to restrictions in the availability of medications or incorrect use. Subsequently, significant disease burden, including impaired quality of life and mental health and decreased productivity, was evident. Increased patient education and access to newer, more effective therapies are needed.


2020 ◽  
Vol 28 (11) ◽  
pp. 5469-5478
Author(s):  
Yemataw Wondie ◽  
Andreas Hinz

Abstract Purpose Cancer is of increasing prevalence in less-developed countries. However, research on the patients’ quality of life (QoL) in these countries is very limited. The aim of this study was to examine QoL of cancer patients in Africa. Method A sample of 256 cancer patients treated in an Ethiopian hospital was examined with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire EORTC QLQ-C30, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. A group of 1664 German cancer patients served as a comparison group. Results Most of the scales of the EORTC QLQ-C30 showed acceptable reliability in the Ethiopian sample. Compared with the German cancer patients, the Ethiopian patients showed lower QoL in most dimensions, especially in financial difficulties, physical functioning, pain, and appetite loss (effect sizes between 0.52 and 0.75). Illiteracy, tumor stage, and treatment (surgery and chemotherapy) were associated with QoL in the Ethiopian sample. QoL was strongly correlated with fatigue, anxiety, and depression. Conclusion The EORTC QLQ-C30 is a suitable instrument for measuring QoL in Ethiopia. The detriments in QoL in the Ethiopian patients indicate specific cancer care needs for the patients in a developing country.


2008 ◽  
Vol 11 (1) ◽  
pp. 250-258 ◽  
Author(s):  
María Ángeles Pérez San Gregorio ◽  
Agustín Martín Rodríguez ◽  
José Pérez Bernal

The aim of this investigation is to analyze the psychological differences of patients and their relatives according to the formers' post-transplantation anxiety. We used two groups of participants: transplant patients (n = 166) and close relatives (n = 166). Four questionnaires were applied: a Psychological Survey (to both groups), the Hospital Anxiety and Depression Scale, and the Quality of Life Questionnaire (to the transplant patients), and the Leeds Scales for the Self-Assessment of Anxiety and Depression (to the relatives). Participants were assessed twice: post-Intensive Care Unit (ICU; when patients were moved from the ICU to the Transplantation Unit) and post-hospital (one year after transplant). Results showed that high anxiety in patients just after organ transplant was related to an increase of anxiety and depression symptoms both in patients and relatives one year after transplant; it was also related to a decrease in the quality of life of these patients.


Author(s):  
Kristina Holmegaard Nørskov ◽  
Dorthe Overgaard ◽  
Jannie Boesen ◽  
Anne Struer ◽  
Sarah Elke Weber Due El-Azem ◽  
...  

Abstract Purpose This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. Methods A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy–Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. Results Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. Conclusion The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. Trial registration NCT03493906


2019 ◽  
Vol 33 (6) ◽  
pp. 907-911
Author(s):  
Janina Hahn ◽  
Melanie Nordmann-Kleiner ◽  
Susanne Trainotti ◽  
Thomas K. Hoffmann ◽  
Jens Greve

Background: Hereditary angioedema (HAE) patients suffer from recurrent swellings. Current standard therapy consists of C1 esterase inhibitor (C1-INH) and bradykinin receptor B2 antagonists. Severe courses require prophylactic treatment. For such patients, it has been demonstrated that the intravenous (IV) administration of C1-INH [C1-INH(IV)] is safe and effective. A new prophylactic option is subcutaneous (SC) treatment with C1-INH. Methods and Case: We present the case of an HAE patient placed on prophylactic C1-INH(IV) therapy due to frequent attacks when managed with on-demand therapy. An implanted port allowed the periodical and safe application of medication until the device was explanted due to an infection. Due to the poor venous access, repeated IV application failed. Therefore, we began a SC treatment with 1500 IU C1-INH [C1-INH(SC)] as long-term prophylaxis and analyzed the clinical course over 16 months. Results: Under the SC prophylaxis, the number of attacks were reduced to 1/month in comparison to 4.33/month with no prophylactic treatment and 1.83/month with C1-INH(IV). No severe attacks and no attack within the upper airway occurred over the 16 months of C1-INH(SC) treatment. As a result, quality of life improved, as measured by the Angioedema quality of life questionaire (AE-QoL). Conclusion: Self-administered SC prophylactic use of C1-INH over a period of 16 months seems to be a well tolerated and efficient. The patient’s quality of life improved, and by learning self-application, the patient gained independence.


2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Lucía Dafauce ◽  
David Romero ◽  
Carlos Carpio ◽  
Paula Barga ◽  
Santiago Quirce ◽  
...  

Abstract Background Severe asthma affects a small population but carries a high psychopathological risk. Therefore, the psychodemographic profile of these patients is of interest. A substantial prevalence of anxiety, depression, alexithymia and hyperventilation syndrome in severe asthma is known, but contradictory results have been observed. These factors can also affect patients’ quality of life. For this reasons, our purpose is to evaluate the psychodemographic profile of patients with severe asthma and assess the prevalence of anxiety, depression, alexithymia and hyperventilation syndrome and their impact on the quality of life of patients with severe asthma. Methods A cross-sectional study of 63 patients with severe asthma. Their psychodemographic profile was evaluated using the Hospital Anxiety and Depression Scale (HADS), Toronto Alexithymia Scale (TAS-20), Nijmegen questionnaire and Asthma Control Test (ACT) to determine the state of anxiety and depression, alexithymia, hyperventilation syndrome and control of asthma, respectively. Quality of life was assessed with the Mini Asthma Quality of Life Questionnaire (Mini-AQLQ). Results The mean age was 60 ± 13.6 years. Personal psychopathological histories were found in 65.1% of participants, and 8% reported previous suicidal attempts. The rate of anxiety and/or depression (HADS ≥ 11) was 68.3%. These patients present higher scores on the TAS-20 (p < 0.001) for the level of dyspnea (p = 0.021), and for emotional function (p = 0.017) on the Mini-AQLQ, compared with patients without anxiety or depression. Alexithymia (TAS-20 ≥ 61) was observed in 42.9% of patients; these patients were older (p = 0.037) and had a higher HADS score (p = 0.019) than patients with asthma without alexithymia. On the other hand, patients with hyperventilation syndrome (Nijmegen ≥ 23) scored higher on the HADS (p < 0.05), on the Mini-AQLQ (p = 0.002) and on the TAS-20 (p = 0.044) than the group without hyperventilation syndrome. Quality of life was related to anxiety-depression symptomatology (r =  − 0.302; p = 0.016) and alexithymia (r =  − 0.264; p = 0.036). Finally, the Mini-AQLQ total score was associated with the Nijmegen questionnaire total score (r =  − 0.317; p = 0.011), and the activity limitation domain of the Mini-AQLQ correlated with the ACT total score (r = 0.288; p = 0.022). Conclusions The rate of anxiety, depression, alexithymia and hyperventilation syndrome is high in patients with severe asthma. Each of these factors is associated with a poor quality of life.


Author(s):  
Elżbieta Szlenk-Czyczerska ◽  
Marika Guzek ◽  
Dorota Emilia Bielska ◽  
Anna Ławnik ◽  
Piotr Polański ◽  
...  

The aim of this cross-sectional study was to analyze selected variables differentiating rural from urban populations, as well as identify potentially increased levels of depression and anxiety in patients with chronic cardiovascular disease. The study was carried out in 193 patients. The study used the Camberwell Assessment of Need Short Appraisal Schedule (CANSAS), the Health Behavior Inventory Questionnaire (HBI), the WHOQOL-BREF Quality of Life Questionnaire, and the Hospital Anxiety and Depression Scale–Modified Version (HADS-M). Spearman’s rank correlation coefficient test and logistic regression were used for analyses. In rural patients, we observed a relationship between anxiety and age (1/OR = 1.04; 95% CI: 0.91–0.99), the assessment of satisfied needs (1/OR = 293.86; 95% CI: 0.00001–0.56), and quality of life (QoL) in physical (OR = 1.56; 95% CI: 1.11–2.33), social (1/OR = 1.53; 95% CI: 0.04–0.94), and environmental domains (OR = 1.67; 95% CI: 1.06–3.00), as well as between depression and QoL in physical (1/OR = 1.39; 95% CI: 0.50–0.97) and psychological (OR = 1.37; 95% CI: 1.01–1.93) domains. In city patients, we observed a relationship between the drug and Qol in the physical (1/OR = 1.25; 95% CI: 0.62–0.98) and psychological (OR = 1.49; 95% CI: 1.13) domains. Younger patients living in a rural area with a lower assessment of met needs, a higher level of QoL in physical and environmental domains, and a lower social domain, as well as patients living in a city with a lower QoL in the physical domain and a higher psychological domain, have a greater chance of developing anxiety and depressive disorders.


2004 ◽  
Vol 89 (11) ◽  
pp. 5369-5376 ◽  
Author(s):  
Nienke R. Biermasz ◽  
Sjoerd W. van Thiel ◽  
Alberto M. Pereira ◽  
Hendrieke C. Hoftijzer ◽  
Albert M. van Hemert ◽  
...  

Abstract The long-term impact of acromegaly on subjective well-being after treatment of GH excess is unclear. Therefore, we evaluated quality of life by validated questionnaires in a cross-sectional study of 118 successfully treated acromegalic patients. The initial treatment was transsphenoidal surgery in most patients (92%), if necessary followed by radiotherapy or octreotide. All patients were in remission at the time of assessment (GH, &lt;1.9 μg/liter; normal IGF-I for age). General perceived well-being was reduced compared with controls for all subscales (P &lt; 0.001) as measured by the Nottingham Health Profile and the Short Form-36. Acromegalic patients also had lower scores on fatigue (Multidimensional Fatigue Index) and anxiety and depression (Hospital Anxiety and Depression Scale). Radiotherapy was associated with decreased quality of life in all subscales except for the Hospital Anxiety and Depression Scale, and worsened quality of life significantly, according to the fatigue scores. Somatostatin analog treatment was not associated with improved quality of life. Independent predictors of quality of life were age (physical subscales and Nottingham Health Profile), disease duration (social isolation and personal relations), and radiotherapy (physical and fatigue subscales). In conclusion, patients cured after treatment for acromegaly have a persistently decreased quality of life despite long-term biochemical cure of GH excess. Radiotherapy especially is associated with a reduced quality of life.


2015 ◽  
Vol 33 (1) ◽  
pp. 39-53 ◽  
Author(s):  
Helena Sousa ◽  
Leonor Lencastre ◽  
Marina Guerra

ResumoObjetivos: Caracterizar as variáveis alexitimia, espiritualidade (dimensão crenças espirituais/religiosas e dimensão esperança/otimismo), assertividade e qualidade de vida de mulheres com cancro de mama.Método: A amostra é composta por 85 mulheres com cancro de mama de um Hospital do Grande Porto, com uma média de 47 anos e maioritariamente casadas. As doentes foram avaliadas através de 6 instrumentos de autopreenchimento: Questionário Sociodemográfico e Clínico; Hospital Anxiety and Depression Scale (HADS); Escala de Alexitimia de Toronto (TAS-20); Escala de Avaliação da Espiritualidade; Escala de Assertividade de Rathus e The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQC-30, v.3.0). Resultados: Os resultados indicam que a alexitimia se correlaciona de forma negativa com a dimensão esperança/otimismo e com a assertividade e que estas três variáveis têm influência na qualidade de vida. Mostram ainda a existência de uma correlação positiva entre a idade e a qualidade de vida global, bem como uma correlação negativa do número de anos de escolaridade com a alexitimia e com a dimensão crenças. O modelo preditor da qualidade de vida obtido exclui a influência da assertividade e mostra o impacto negativo da alexitimia e a influência positiva da dimensão esperança/otimismo na qualidade de vida de mulheres com cancro de mama, mesmo depois de controladas as variáveis ansiedade e depressão.


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