24 Result(s)

Article

Eteplirsen Treatment for Duchenne Muscular Dystrophy: A Qualitative Patient Experience Study

Duchenne muscular dystrophy (DMD) is characterized by rapid functional decline. Current available treatment options aim to delay disease progression or stabilize physical function. To aid in healthcare provide...

Joel Iff, Chloe Carmichael, Stephanie McKee, Ihor Sehinovych… in Advances in Therapy (2024)

Article

Perceptions and Acceptance of a Prophylactic Vaccine for Human Immunodeficiency Virus (HIV): A Qualitative Study

Despite advances in human immunodeficiency virus (HIV) prevention methods, such as the advent of pre-exposure prophylaxis (PrEP), the number of people with newly acquired HIV remains high, particularly in at-r...

Natalie V. J. Aldhouse, Eric K. H. Chan… in The Patient - Patient-Centered Outcomes Re… (2024)

Article

Development of a Conceptual Model for the Patient Experience of Immunoglobulin A Nephropathy (IgAN): A Qualitative Literature Review

Immunoglobulin A nephropathy (IgAN) is a kidney disorder that can lead to progressive kidney disease. Currently, there lacks a comprehensive overview of the symptoms and impacts experienced by those living wit...

Natalie V. J. Aldhouse, Helen Kitchen, Tamara Al-Zubeidi… in Advances in Therapy (2024)

Article

A conceptual model for chronic hepatitis B and content validity of the Hepatitis B Quality of Life (HBQOL) instrument

There is increased emphasis on incorporating patient perspectives and patient-relevant endpoints in drug development. We developed a conceptual model of the impact of chronic hepatitis B (CHB) on patients’ liv...

Jane Abbott, Natalie V. J. Aldhouse, Helen Kitchen… in Journal of Patient-Reported Outcomes (2024)

Article

Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States

People with chronic hepatitis B (CHB) commonly experience social and self-stigma. This study sought to understand the impacts of CHB-related stigma and a functional cure on stigma.

Mondher Toumi, Jack Wallace, Chari Cohen, Chris Marshall… in BMC Public Health (2024)

Article

Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review

Focal segmental glomerulosclerosis (FSGS) is a leading cause of kidney disease and can progress to end stage kidney disease (ESKD). An overview of symptoms and impacts of the disease experienced will help info...

Natalie V. J. Aldhouse, Helen Kitchen, Tamara Al-Zubeidi… in Advances in Therapy (2023)

Article

A Qualitative Study to Develop and Evaluate the Content Validity of the Vitiligo Patient Priority Outcome (ViPPO) Measures

Vitiligo can be associated with a psychological burden, stigmatization and impaired quality of life. Tools to assess the impact of vitiligo exist; however, none were developed in line with the FDA’s patient-re...

Helen Kitchen, Kavita Gandhi, Chloe Carmichael… in Dermatology and Therapy (2022)

Article

Meaningful Changes in What Matters to Individuals with Vitiligo: Content Validity and Meaningful Change Thresholds of the Vitiligo Area Scoring Index (VASI)

This study explored patients’ and dermatologists’ priority outcomes for treatment to address, clinical outcome assessments (COA) for use in vitiligo clinical trials, and perceptions of within-patient meaningfu...

Helen Kitchen, Kathleen W. Wyrwich, Chloe Carmichael… in Dermatology and Therapy (2022)

Article

Key measurement concepts and appropriate clinical outcome assessments in pediatric achondroplasia clinical trials

This study aimed to identify fit-for-purpose clinical outcome assessments (COAs) to evaluate physical function, as well as social and emotional well-being in clinical trials enrolling a pediatric population wi...

Natalie V. J. Aldhouse, Helen Kitchen, Chloe Johnson… in Orphanet Journal of Rare Diseases (2022)

Article

Dermatologist and Patient Perceptions of Treatment Success in Alopecia Areata and Evaluation of Clinical Outcome Assessments in Japan

The content validity and treatment success thresholds of clinical outcome assessments (COAs) for alopecia areata (AA)—including the Alopecia Areata-Investigator Global Assessment™ (AA-IGA™), Scalp Hair Assessm...

Jake Macey, Helen Kitchen, Natalie V. J. Aldhouse… in Dermatology and Therapy (2021)

Article

Patients’ and clinicians’ perspectives on item importance, scoring, and clinically meaningful differences for the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

The Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) are patient-reported outcome measures developed to evaluate efficacy in clinical trials and clinical practice. The ESD is a daily elec...

Helen Kitchen, Christian Seitz, Andrew Trigg… in Health and Quality of Life Outcomes (2021)

Article

Development of Clinician-Reported Outcome (ClinRO) and Patient-Reported Outcome (PRO) Measures for Eyebrow, Eyelash and Nail Assessment in Alopecia Areata

Eyebrow and eyelash hair loss and nail damage—in addition to scalp hair loss—are important signs/symptoms of alopecia areata (AA) to patients and deserve assessment in AA clinical trials.

Kathleen W. Wyrwich, Helen Kitchen… in American Journal of Clinical Dermatology (2020)

Article

“‘You lose your hair, what’s the big deal?’ I was so embarrassed, I was so self-conscious, I was so depressed:” a qualitative interview study to understand the psychosocial burden of alopecia areata

Alopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA.

Natalie V. J. Aldhouse, Helen Kitchen, Sarah Knight… in Journal of Patient-Reported Outcomes (2020)

Article

Exploring the patient experience of locally advanced or metastatic pancreatic cancer to inform patient-reported outcomes assessment

Pancreatic cancer and its treatments impact patients’ symptoms, functioning, and quality of life. Content-valid patient-reported outcome (PRO) instruments are required to assess outcomes in clinical trials. Th...

Joseph M. Herman, Helen Kitchen, Arnold Degboe… in Quality of Life Research (2019)

Article

Patients’ experience of recurrent/metastatic head and neck squamous cell carcinoma and their perspective on the EORTC QLQ-C30 and QLQ-H&N35 questionnaires: a qualitative study

Head and neck squamous cell carcinoma (HNSCC) and its associated treatments may affect all aspects of patients’ health-related quality of life (HRQoL). Although the EORTC QLQ-H&N35 is regularly administered to...

Arnold Degboe, Sarah L. Knight, Katarina Halling… in Journal of Patient-Reported Outcomes (2018)

Article

A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

The Food and Drug Administration patient-reported outcome (PRO) guidance provides standards for PRO development, but these standards bring scientific and logistical challenges which can result in a lengthy and...

Louise Humphrey, Thomas Willgoss, Andrew Trigg… in Journal of Patient-Reported Outcomes (2017)

Article

Patients’ Lived Experiences of Nocturia: A Qualitative Study of the Evening, the Night, and the Next Day

Nocturia, waking to urinate two or more times during the night, is a chronic condition associated with significant patient burden due to sleep disruption. This study aimed to explore the lived experiences of p...

Andrew Trigg, Fredrik L. Andersson… in The Patient - Patient-Centered Outcomes Re… (2017)

Article

Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research

Galina Velikova, Jose M. Valderas, Caroline Potter… in Health and Quality of Life Outcomes (2017)

Article

Healthcare Resource Utilization and Costs Associated with Ketosis Events in Pediatric and Adult Patients with Type 1 Diabetes Mellitus in the UK

Ketosis is a metabolic state associated with insulin deficiency. Untreated, it develops into diabetic ketoacidosis, a significant contributor to mortality and morbidity in people with type 1 diabetes mellitus ...

Nandu Thalange, Natalie Valerie Jane Aldhouse, Helen Kitchen… in Diabetes Therapy (2017)