Search Results - "Alexia Marrel"
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Understanding disease symptoms and impacts and producing qualitatively-derived severity stages for MPS IIIA: a mixed methods approach
Published in Orphanet journal of rare diseases (22-02-2022)“…MPS IIIA is a rare, degenerative pediatric genetic disease characterized by symptoms impacting cognition, mobility and behavior; the mean age of death is…”
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Lived experiences of patients with distal renal tubular acidosis treated with ADV7103 and of their caregivers: a qualitative study
Published in Orphanet journal of rare diseases (28-03-2022)“…Consequences of distal renal tubular acidosis (dRTA) on growth, bone and kidney, sometimes associated with hearing loss, may significantly affect quality of…”
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How to address the challenges of evaluating treatment benefits-risks in rare diseases? A convergent mixed methods approach applied within a Merkel cell carcinoma phase 2 clinical trial
Published in Orphanet journal of rare diseases (18-06-2018)“…Demonstrating treatment benefits within clinical trials in the context of rare diseases is often methodologically and practically challenging. Mixed methods…”
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Psychometric properties of the FACT-M questionnaire in patients with Merkel cell carcinoma
Published in Health and quality of life outcomes (22-12-2017)“…No validated disease-specific questionnaires exist to capture health-related quality of life (HRQoL) in patients with Merkel cell carcinoma (MCC). The…”
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Perceived Unmet Needs in Patients Living With Advanced Bladder Cancer and Their Caregivers: Infodemiology Study Using Data From Social Media in the United States
Published in JMIR cancer (20-09-2022)“…Background: Locally advanced or metastatic bladder cancer (BC), which is generally termed advanced BC (aBC), has a very poor prognosis, and in addition to its…”
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Correction to: Psychometric properties of the FACT-M questionnaire in patients with Merkel cell carcinoma
Published in Health and quality of life outcomes (27-03-2019)“…Health and Quality of Life Outcomes (2017) 15:247 https://doi.org/10.1186/s12955-017-0815-5 Unfortunately, the original version of this article [1] contained…”
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Patient and Caregiver Perceptions of Advanced Bladder Cancer Systemic Treatments: Infodemiology Study Based on Social Media Data
Published in JMIR cancer (27-03-2023)“…In 2022, it was estimated that more than 80,000 new cases of bladder cancer (BC) were diagnosed in the United States, 12% of which were locally advanced or…”
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When insulin degludec enhances quality of life in patients with type 2 diabetes: a qualitative investigation
Published in Health and quality of life outcomes (03-05-2018)“…Anecdotal reports suggest that insulin degludec (IDeg) may offer unique health-related quality of life (HRQoL) benefits. As the nature of these benefits remain…”
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Integrating qualitative interviews in drug development and the use of qualitative evidence in product labelling and health technology assessments: a review
Published in Frontiers in medicine (20-06-2023)“…Including qualitative research in clinical trial design is an innovative approach to understanding patients' perspective and incorporate the patient's voice in…”
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Multinational development of a questionnaire assessing patient satisfaction with anticoagulant treatment: the 'Perception of Anticoagulant Treatment Questionnaire' (PACT-Q)
Published in Health and quality of life outcomes (06-02-2009)“…The side effects and burden of anticoagulant treatments may contribute to poor compliance and consequently to treatment failure. A specific questionnaire is…”
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Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients' experience
Published in Health and quality of life outcomes (05-02-2014)“…Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this…”
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Validation of the Pediatric Narcolepsy Screening Questionnaire (PNSQ): A cross-sectional, observational study
Published in Sleep medicine (01-10-2022)“…This study evaluated psychometric properties of the Pediatric Narcolepsy Screening Questionnaire (PNSQ), developed in response to the difficulty of identifying…”
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Patient (pt) experiences with avelumab in treatment-naive metastatic Merkel cell carcinoma (mMCC): Qualitative interview findings from a registrational clinical trial
Published in Journal of clinical oncology (10-03-2019)“…Abstract only 90 Background: MCC is a rare, aggressive skin cancer with a poor prognosis. Avelumab is the only anti–PD-L1 monoclonal antibody approved for…”
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Comparative effectiveness of avelumab versus chemotherapy in Merkel cell carcinoma: innovative use of patient insights
Published in Journal of comparative effectiveness research (01-09-2018)“…To assess patient experience with chemotherapy and avelumab in metastatic Merkel cell carcinoma (mMCC). In the JAVELIN Merkel 200 trial,…”
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Patient Experiences with Avelumab in Treatment-Naïve Metastatic Merkel Cell Carcinoma: Longitudinal Qualitative Interview Findings from JAVELIN Merkel 200, a Registrational Clinical Trial
Published in The patient : patient-centered outcomes research (01-08-2020)“…Background and Objective Avelumab is approved for the treatment of metastatic Merkel cell carcinoma, a rare aggressive skin cancer with a poor prognosis. The…”
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From testimonials to qualitative research embedded in an MPS IIIA observational study
Published in Molecular genetics and metabolism (01-01-2017)Get full text
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How do Clostridium difficile infections affect nurses' everyday hospital work: A qualitative study
Published in International journal of nursing practice (01-05-2015)“…This qualitative study explored the impact of Clostridium difficile infections on nurses’ everyday work in the hospital. Twelve nurses (six in France and six…”
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Patients’ Experience and Perception of Hospital-Treated Clostridium difficile Infections: a Qualitative Study
Published in The patient : patient-centered outcomes research (2014)“…Background Clostridium difficile is the leading cause of antibiotic-associated diarrhea and an important source of nosocomial infection. Clinical…”
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The community-acquired pneumonia symptom questionnaire: a new, patient-based outcome measure to evaluate symptoms in patients with community-acquired pneumonia
Published in Chest (01-09-2002)“…s: To develop and validate a patient-based outcome measure to evaluate symptoms in patients with community-acquired pneumonia (CAP). A psychometric study…”
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