Helena Bradley
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View article: Qualitative exploration of women’s experiences of vasomotor symptoms to support the content validity of patient-reported outcomes
Qualitative exploration of women’s experiences of vasomotor symptoms to support the content validity of patient-reported outcomes Open
Background Frequency and severity of vasomotor symptoms (VMS; hot flashes) associated with menopause significantly impact women’s health-related quality of life (HRQoL). Treatment benefit in VMS clinical trials is assessed using patient-re…
View article: Understanding the Patient Experience of Advanced Parkinson’s Disease: Qualitative Research with Patients and Expert Clinicians to Identify Symptoms and Associated Health-Related Quality of Life Impacts
Understanding the Patient Experience of Advanced Parkinson’s Disease: Qualitative Research with Patients and Expert Clinicians to Identify Symptoms and Associated Health-Related Quality of Life Impacts Open
The study provides in-depth insights into the symptoms and HRQoL impacts experienced by those with advanced PD. A comprehensive conceptual model of the patient experience of advanced PD was developed to support the identification of releva…
View article: Psychometric evaluation of the HFDD, PROMIS SD SF 8b, and MENQOL questionnaire in women experiencing vasomotor symptoms associated with menopause
Psychometric evaluation of the HFDD, PROMIS SD SF 8b, and MENQOL questionnaire in women experiencing vasomotor symptoms associated with menopause Open
Background Vasomotor symptoms (VMS; hot flashes) associated with menopause have significant impacts on health-related quality of life and are a leading cause for women seeking medical attention. Patient-reported outcome (PRO) instruments a…
View article: Development and content validity of the Glut1DS Movement Disorder Diary
Development and content validity of the Glut1DS Movement Disorder Diary Open
To explore the experience of patients with glucose transporter type 1 deficiency syndrome (Glut1DS) and paroxysmal movement disorders (PMDs) and develop a novel movement disorder diary. A qualitative literature review, semi-structured conc…
View article: Patient‐Reported Outcome Measures for Severe Recurrent Bilateral Nasal Polyps: Psychometric Evaluation and Content Validity
Patient‐Reported Outcome Measures for Severe Recurrent Bilateral Nasal Polyps: Psychometric Evaluation and Content Validity Open
Objective To date, no patient‐reported outcome measures have been specifically developed to assess pharmacological treatment effect in participants with severe chronic rhinosinusitis (CRS) with recurrent bilateral nasal polyps (NP). These …
View article: Qualitative exploration of the visual function impairments and impacts on vision-dependent activities of daily living in Retinitis Pigmentosa and Leber Congenital Amaurosis: content validation of the ViSIO-PRO and ViSIO-ObsRO measures
Qualitative exploration of the visual function impairments and impacts on vision-dependent activities of daily living in Retinitis Pigmentosa and Leber Congenital Amaurosis: content validation of the ViSIO-PRO and ViSIO-ObsRO measures Open
Background Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA) are rare inherited retinal degenerative disorders. The associated visual impairments have significant impacts on patients’ vision-dependent activities of daily livin…
View article: Development of Novel Patient-Reported Outcome (PRO) and Observer-Reported Outcome (ObsRO) Instruments in Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA): ViSIO-PRO and ViSIO-ObsRO
Development of Novel Patient-Reported Outcome (PRO) and Observer-Reported Outcome (ObsRO) Instruments in Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA): ViSIO-PRO and ViSIO-ObsRO Open
Results informed and supported development of the instruments to assess visual functioning symptoms and vision-dependent ADL, mobility and distal HRQoL in RP/LCA, in accordance with regulatory standards. Next steps to further support use i…
View article: Psychometric Validation of the ViSIO-PRO and ViSIO-ObsRO in Retinitis Pigmentosa and Leber Congenital Amaurosis
Psychometric Validation of the ViSIO-PRO and ViSIO-ObsRO in Retinitis Pigmentosa and Leber Congenital Amaurosis Open
Findings supported item reduction and established scoring of the instruments. Evidence of reliability and validity as outcome measures in RP/LCA was also reported. Further research is ongoing to explore responsiveness of the ViSIO-PRO and …
View article: Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN)
Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN) Open
Objective SLE and lupus nephritis (LN) have significant impacts on the health-related quality of life of patients living with the condition, which are important to capture from the patient’s perspective using patient-reported outcomes (PRO…
View article: Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany
Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany Open
Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL.