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Article
Open AccessAppropriateness of the EQ-5D-5L in capturing health-related quality of life in individuals with transfusion-dependent β-thalassemia: a mixed methods study
Individuals with transfusion-dependent β-thalassemia (TDT) experience symptoms and functional impacts that reduce their health-related quality of life. However, EQ-5D-derived health utility index scores in TDT...
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Article
Open AccessA qualitative study to explore the burden of disease in activated phosphoinositide 3-kinase delta syndrome (APDS)
Activated phosphoinositide 3-kinase delta syndrome (APDS) is an ultra-rare primary immunodeficiency, with only 256 cases reported globally. This study aimed to explore the disease burden of APDS from the persp...
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Article
Open AccessShared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey
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 impac...
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Article
Open AccessThe Burden of Caring for Individuals with Tuberous Sclerosis Complex (TSC) Who Experience Epileptic Seizures: A Descriptive UK Survey
Tuberous sclerosis complex (TSC) is a rare multisystem genetic condition characterised by benign tumours; prevalent manifestations include epilepsy and neuropsychiatric disorders. This study examined the burde...
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Article
Open AccessSymptoms and impacts of aromatic l-amino acid decarboxylase (AADC) deficiency among individuals with different levels of motor function
Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare neurological disorder associated with a range of symptoms and functional impairments. The aim of this study was to describe the experience of AADC d...
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Article
Open AccessCorrection to: Demographic and psychological predictors of community pharmacists’ cancer-related conversations with patients: a cross-sectional analysis and survey study
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Article
Open AccessDemographic and psychological predictors of community pharmacists’ cancer-related conversations with patients: a cross-sectional analysis and survey study
There is increasing interest in the role of community pharmacy in the early diagnosis and prevention of cancer. This study set out to examine how often community pharmacists (CPs) encourage patients to spot or...
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Article
Open AccessPatient and Caregiver Health State Utilities in Tuberous Sclerosis Complex
Tuberous sclerosis complex (TSC) is a rare multisystem disorder often associated with treatment-resistant epilepsy. Cost-effectiveness analysis for new antiseizure medications typically requires health state u...
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Article
Open AccessBarriers to bowel scope (flexible sigmoidoscopy) screening: a comparison of non-responders, active decliners and non-attenders
Participation in bowel scope screening (BSS) is low (43%), limiting its potential to reduce colorectal cancer (CRC) incidence and mortality. This study aimed to quantify the prevalence of barriers to BSS and e...
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Article
Open AccessText-message Reminders in Colorectal Cancer Screening (TRICCS): a randomised controlled trial
We investigated the effectiveness of a text-message reminder to improve uptake of the English Bowel Cancer Screening programme in London.
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Article
Open AccessUsing Specialist Screening Practitioners (SSPs) to increase uptake of the Bowel Scope (Flexible Sigmoidoscopy) Screening Programme: a study protocol for a feasibility single-stage phase II trial
The NHS Bowel Scope Screening (BSS) programme offers men and women aged 55 years a once-only flexible sigmoidoscopy (FS), a test that can help reduce colorectal cancer (CRC) incidence and mortality. However, t...
