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Impact of injectable HAE on-demand treatments on health-related quality of life: a patient and caregiver interview study Open
Background Hereditary angioedema (HAE) attacks can be unpredictable, painful, and debilitating. Although studies described the burden of prophylactic HAE treatments on patient and caregiver health-related quality of life (HRQoL), few have …
Caregiver burden associated with caring for individuals with tuberous sclerosis complex-associated seizures: A descriptive, non-interventional survey in Sweden Open
Tuberous sclerosis complex (TSC)-associated seizures result in a significant burden for caregivers. To quantify time spent and describe activities undertaken by caregivers of individuals with TSC-associated seizures in Sweden, primary care…
View article: P1599: REAL-WORLD CLINICAL PRACTICES IN TREATMENT DISCONTINUATION WITH COMPLEMENT C5 INHIBITORS FOR ATYPICAL HEMOLYTIC UREMIC SYNDROME: A GLOBAL SURVEY OF HEALTHCARE PROFESSIONALS
P1599: REAL-WORLD CLINICAL PRACTICES IN TREATMENT DISCONTINUATION WITH COMPLEMENT C5 INHIBITORS FOR ATYPICAL HEMOLYTIC UREMIC SYNDROME: A GLOBAL SURVEY OF HEALTHCARE PROFESSIONALS Open
Topic: 32. Platelet disorders Background: Atypical hemolytic uremic syndrome (aHUS) is a rare disease characterized by hemolytic anemia, thrombocytopenia and organ damage. Ravulizumab (RAV) and eculizumab (ECU) are complement C5 inhibitors…
Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey Open
Background Tuberous sclerosis complex (TSC) is a rare genetic condition commonly accompanied by neurological and neuropsychological disorders, resulting in a high burden of illness for individuals and a substantial impact on their caregive…
View article: A stated preference survey to explore patient preferences for novel preventive migraine treatments
A stated preference survey to explore patient preferences for novel preventive migraine treatments Open
Objective The objective of this study was to explore patient preference for attributes of calcitonin gene‐related peptide (CGRP) inhibitors for the preventive treatment of migraine and to describe differences in treatment preferences betwe…
View article: Measuring interictal burden among people affected by migraine: a descriptive survey study
Measuring interictal burden among people affected by migraine: a descriptive survey study Open
Background Previous research has extensively documented the impact of migraine episodes (‘ictal’) on patients’ health-related quality of life. Few studies have looked at the impact of migraine on migraine-free days (‘interictal’). This stu…
Real-World experience of interictal burden and treatment in migraine: a qualitative interview study Open
Background: The debilitating nature of migraine attacks is widely established; however, less is known about how the interictal burden (i.e., how patients are affected in-between migraine episodes) of migraine impacts on patients’ health-re…
Patient and Caregiver Treatment Preferences in Type 2 and Non-ambulatory Type 3 Spinal Muscular Atrophy: A Discrete Choice Experiment Survey in Five European Countries Open
Background Spinal muscular atrophy (SMA) is a rare neuromuscular disease that affects motor neurons, resulting in progressive skeletal muscle weakness and atrophy. Objective The aim of this study was to examine treatment preferences of pat…
Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States Open
TTO utility values demonstrate that HAE places a significant burden on patients, which is influenced by attack location, and on caregivers. These utility weights can provide important information on quality of life for future economic eval…
Patient and Caregiver Health State Utilities in Tuberous Sclerosis Complex Open
Findings highlight the substantial burden of living with TSC and caring for a child with TSC. Patient and caregiver burden was greater for generalised versus focal seizures. The burden was greatest for a combination of both seizure types a…
View article: Patient Preferences for Advanced Hepatocellular Carcinoma Treatment: A Multicountry Stated Preference Study
Patient Preferences for Advanced Hepatocellular Carcinoma Treatment: A Multicountry Stated Preference Study Open
The present study aimed to explore patient preferences for attributes of advanced hepatocellular carcinoma (HCC) treatments. A stated preference survey was completed by 150 patients with HCC living in Europe. Overall survival (OS) was the …
Burden of allergic rhinitis and impact of MP-AzeFlu from the patient perspective: pan European patient survey Open
The impact of AR on patients' lives remains high. Real-life use of MP-AzeFlu reduces that impact and is associated with a high level of effectiveness, convenience and global satisfaction.
View article: Implementation intention and planning interventions in Health Psychology: Recommendations from the Synergy Expert Group for research and practice
Implementation intention and planning interventions in Health Psychology: Recommendations from the Synergy Expert Group for research and practice Open
The current article details a position statement and recommendations for future research and practice on planning and implementation intentions in health contexts endorsed by the Synergy Expert Group. The group comprised world-leading rese…
Does psychosocial stress exacerbate avoidant responses to cancer information in those who are afraid of cancer? A population-based survey among older adults in England Open
Cancer fear and psychosocial stress interact to produce disengagement with cancer-related information, highlighting the importance of affective processes to cancer control efforts.
View article: Implementation intention and planning interventions in Health Psychology: Recommendations from the Synergy Expert Group for research and practice
Implementation intention and planning interventions in Health Psychology: Recommendations from the Synergy Expert Group for research and practice Open
The current article details a position statement and recommendations for future research and practice on planning and implementation intentions in health contexts endorsed by the Synergy Expert Group. The group comprised world-leading rese…