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  1. Article

    Open Access

    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)

  2. Article

    Open Access

    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)

  3. Article

    Open Access

    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)

  4. Article

    Open Access

    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)

  5. No Access

    Article

    Using qualitative methods to establish the clinically meaningful threshold for treatment success in alopecia areata

    Traditionally, appropriate anchors are used to investigate the amount of change on a clinician-reported outcome assessment that is meaningful to individual patients. However, novel qualitative methods involvin...

    Kathleen W. Wyrwich, Helen Kitchen, Sarah Knight in Quality of Life Research (2023)

  6. Article

    Open Access

    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)

  7. Article

    Open Access

    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)

  8. Article

    Open Access

    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)

  9. Article

    Open Access

    “‘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)

  10. Article

    Open Access

    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)

  11. Article

    Open Access

    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)