scholarly journals Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Konrad Bork ◽  
John T. Anderson ◽  
Teresa Caballero ◽  
Timothy Craig ◽  
Douglas T. Johnston ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Clinical Management ◽  
Disease Burden ◽  
The United States ◽  
Consensus Meeting ◽  
Consensus Statements ◽  
Consensus Report

Abstract Background Hereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in significant physical and emotional burdens for patients and families. To optimize care for patients with HAE, an individualized management plan should be considered in partnership with the physician, requiring comprehensive assessment of the patient’s frequency and severity of attacks, disease burden, and therapeutic control. Although several guidelines and consensus papers have been published concerning the diagnosis and treatment of HAE, there has been limited specific clinical guidance on the assessment of disease burden and quality of life (QoL) in this patient population. Practical guidance is critical in supporting effective long-term clinical management of HAE and improving patient outcomes. The objective of this review is to provide evidence-based guidelines for an individualized assessment of disease burden and QoL in patients with HAE. Methods A consensus meeting was held on February 29, 2020, consisting of 9 HAE experts from the United States and Europe with extensive clinical experience in the treatment of HAE. Consensus statements were developed based on a preliminary literature review and discussions from the consensus meeting. Results Final statements reflect the consensus of the expert panel and include the assessment of attack severity, evaluation of disease burden, and long-term clinical management of HAE caused by C1-esterase inhibitor deficiency. Patient-reported outcome measures for assessing HAE attack severity and frequency are available and valuable tools; however, attack frequency and severity are insufficient markers of disease severity unless they are evaluated in the broader context of the effect on an individual patient’s QoL. QoL assessments should be individualized for each patient and minimally, they should address the interference of HAE with work, school, social, family, and physical activity, along with access to and burden of HAE treatment. Advances in HAE therapies offer the opportunity for comprehensive, individualized treatment plans, allowing patients to achieve minimal attack burden with reduced disease and treatment burden. Conclusion This consensus report builds on existing guidelines by expanding the assessment of disease burden and QoL measures for patients with HAE.

scholarly journals MNGI-27. THE LONG-TERM DISEASE BURDEN OF MENINGIOMA PATIENTS: RESULTS ON HEALTH-RELATED QUALITY OF LIFE, COGNITIVE FUNCTION, ANXIETY AND DEPRESSION

2018 ◽  
Vol 20 (suppl_6) ◽  
pp. vi154-vi155
Author(s):  
Amir Zamanipoor Najafabadi ◽  
Pim van der Meer ◽  
Florien Boele ◽  
Rob Nabuurs ◽  
Johan Koekkoek ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Disease Burden ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Short- and Long-term Cardiovascular Complications of Cancer Treatment: Overview for the Practicing Oncologist

2012 ◽  
pp. 553-554
Author(s):  
Chetan Shenoy ◽  
Gretchen Kimmick
Keyword(s):  
Quality Of Life ◽  
Cancer Treatment ◽  
The United States ◽  
Cardiovascular Complications ◽  
Complex Interaction ◽  
Comorbid Illness ◽  
Increase Risk ◽  
Short And Long Term

Overview: As new therapies improve survival from cancer, attention to comorbid illness and complications of therapy—both short- and long-term—become much more important to improving not only quality of life but also overall survival. Recognized for its importance as the leading cause of death in the United States, heart disease often coexists with cancer, and cancer treatment may increase risk and/or severity. In addition, there are well-recognized cardiovascular toxicities of cancer treatment, including not only cardiomyopathy, but also hypertension, hypercholesterolemia, and others. Oncologists and cardiologists are working closely to learn more about the complex interaction and to improve management and outcome for patients.

Preoperative Pain is the Strongest Predictor of Postoperative Pain and Diminished Quality of Life after Ventral Hernia Repair

2013 ◽  
Vol 79 (8) ◽  
pp. 829-836 ◽  
Author(s):  
Victor B. Tsirline ◽  
Paul D. Colavita ◽  
Igor Belyansky ◽  
Allay Zemlyak ◽  
Amy E. Lincourt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Postoperative Pain ◽  
Hernia Repair ◽  
Ventral Hernia ◽  
Severe Pain ◽  
The United States ◽  
Preoperative Pain ◽  
Patient Reported

With evolution of hernia repair surgery, quality of life (QOL) became a major outcome measure in nearly 350,000 ventral hernia repairs (VHRs) performed annually in the United States. This study identified predictors of chronic pain after VHR. A prospective database of patient-reported QOL outcomes at a tertiary referral center was queried from 2007 to 2010; 512 patients met inclusion criteria. Factors including demographics, medical comorbidities, preoperative symptoms, and hernia characteristics were analyzed using advanced statistical modeling. Average age was 56.4 years, 57.6 per cent were males, mean body mass index was 33 kg/m2, hernia defect size was 138 cm2, and 35.5 per cent were repaired laparoscopically. Preoperatively, 69 per cent of patients had mild and 28 per cent severe pain during some activities. Pain levels were elevated in the first month postoperatively; by 6 months, patients reported significant improvement. The most significant and consistent predictor of postoperative pain was the presence of preoperative pain (odds ratio, 2.1; 95% confidence interval, 1.4 to 3.0; P = 0.0001). Older patients and men had less postoperative pain, but they also had less preoperative pain, so these factors were not independent predictors. Patients with minimal preoperative symptoms uniformly experienced resolution of pain by 6 months postoperatively. Among patients with severe preoperative pain, one-third reported long-term resolution of pain, and one-third had persistent severe pain. The former group had smaller hernias (91 vs 194 cm2, respectively, P = 0.015). Cases of new-onset, long-term pain after VHR were rare (less than 2%). Most patients’ symptoms resolve by 6 months after surgery, but those with severe preoperative pain are at risk for persistent postoperative pain.

scholarly journals Stroke Survivor and Caregiver Perspectives on Post-Stroke Visual Concerns and Long-Term Consequences

2018 ◽  
Vol 2018 ◽  
pp. 1-8 ◽  
Author(s):  
Theresa M. Smith ◽  
Monique R. Pappadis ◽  
Shilpa Krishnan ◽  
Timothy A. Reistetter
Keyword(s):  
Quality Of Life ◽  
Community Support ◽  
Stroke Survivor ◽  
The United States ◽  
Stroke Survivors ◽  
Care Providers ◽  
Post Stroke ◽  
Vision Care

Approximately 800,000 people in the United States have a stroke annually. Up to two thirds of stroke survivors have some visual problems, which result in disability and can affect survivors’ overall rehabilitation outcomes. Although some post-stroke visual impairments can be corrected and respond well to intervention, ocular signs can be subtle and may not be recognized or reported by the stroke survivor but rather by a vigilant caregiver. The purpose of this study was to explore the post-stroke visual concerns and consequences expressed by stroke survivors and caregivers. This study employed a qualitative design using semistructured interviews conducted with a convenience sample of stroke survivors and caregivers recruited from either a community support group or skilled nursing and long-term care facilities. Interviews were recorded and transcribed verbatim. Comparative content analysis was used to identify vision-related themes by two independent coders. All research team members completed quality checking of coding. Twenty participants (11 stroke survivors and 9 caregivers) expressed visual concerns or consequences following stroke: (1) eye movement problems, (2) perceptual issues, and (3) consequences of vision problems or issues, which affected their daily life/quality of life. Stroke survivors and caregivers reported receiving vision care from (1) eye doctors, (2) occupational therapists, and (3) other healthcare professionals. All vision care providers need to be observant of potential post-stroke visual concerns. Stroke survivors should have a thorough vision evaluation to optimize their independence in everyday activities and quality of life.

scholarly journals Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life

2019 ◽  
Vol 18 (2) ◽  
pp. 220-240 ◽  
Author(s):  
Carol Y. Ochoa ◽  
Natasha Buchanan Lunsford ◽  
Judith Lee Smith
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Active Treatment ◽  
Financial Burden ◽  
The United States ◽  
Original Research ◽  
Cancer Caregivers

AbstractObjectiveInformal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.MethodsA systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).ResultsOf 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.Significance of ResultsAdditional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.

Successful Long-Term Prophylactic Treatment With Subcutaneous C1 Esterase Inhibitor in a Patient With Hereditary Angioedema

2019 ◽  
Vol 33 (6) ◽  
pp. 907-911
Author(s):  
Janina Hahn ◽  
Melanie Nordmann-Kleiner ◽  
Susanne Trainotti ◽  
Thomas K. Hoffmann ◽  
Jens Greve
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Prophylactic Treatment ◽  
Upper Airway ◽  
Venous Access ◽  
Current Standard ◽  
C1 Esterase Inhibitor ◽  
Esterase Inhibitor

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.

BCX4161, an Oral Kallikrein Inhibitor, Showed Significant Benefits on Reducing Disease Burden and Improving Quality of Life in Subjects with Hereditary Angioedema in the Opus-1 Study

2015 ◽  
Vol 135 (2) ◽  
pp. AB278 ◽  
Author(s):  
Markus Magerl ◽  
Emel Aygören-Pürsün ◽  
Jochen Graff ◽  
Inmaculada Martinez-Saguer ◽  
Wolfhart Kreuz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Disease Burden ◽  
Kallikrein Inhibitor
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