-
Article
Development of a disease conceptual model of patient experience with metastatic colorectal cancer: identification of the most salient symptoms and impacts
Patients with metastatic colorectal cancer (mCRC) experience multiple symptoms and impacts affecting their health-related quality of life. However, there is limited data on self-reported experience of the most...
-
Article
Open AccessExperience of Daily Life with Generalized Myasthenia Gravis: A Qualitative Investigation and Assessment of Instrument Content Validity
Generalized myasthenia gravis (gMG) is a rare autoimmune disease. Symptoms of gMG are diverse, and understanding of their impact on patients is limited. This qualitative study aimed to provide an in-depth expl...
-
Article
Open AccessDevelopment, Psychometric Validation and Responder Definition of Worst Itch Scale in Children with Severe Atopic Dermatitis
Itch associated with atopic dermatitis (AD) has a profoundly negative effect on patients of all ages. Therefore, itch is a main target for AD therapeutic approaches, and treatments are perceived as beneficial ...
-
Article
Open AccessDefinition of Clinically Meaningful Within-Patient Changes in POEM and CDLQI in Children 6 to 11 Years of Age with Severe Atopic Dermatitis
The Patient-Oriented Eczema Measure (POEM) assesses patient-reported severity of atopic dermatitis (AD) symptoms, whereas the Children’s Dermatology Life Quality Index (CDLQI) measures how AD affects health-re...
-
Article
Open AccessResponder Threshold for Patient-Oriented Eczema Measure (POEM) and Children’s Dermatology Life Quality Index (CDLQI) in Adolescents with Atopic Dermatitis
The Patient-Oriented Eczema Measure (POEM) assesses patient-reported frequency of atopic dermatitis (AD) symptoms, while the Children’s Dermatology Life Quality Index (CDLQI) measures the impact of skin diseas...
-
Article
Open AccessValidation of the Atopic Dermatitis Control Tool (ADCT©) using a longitudinal survey of biologic-treated patients with atopic dermatitis
The Atopic Dermatitis Control Tool (ADCT©) is a brief patient self-administered instrument designed and validated to assess atopic dermatitis (AD) control; six AD symptoms and impacts are evaluated over the pa...
-
Article
Open AccessLiving with Merkel Cell Carcinoma (MCC): Development of a Conceptual Model of MCC Based on Patient Experiences
Merkel cell carcinoma (MCC) is a rare and aggressive skin cancer with limited treatment options at advanced stages. There is a paucity of data available regarding the impact of MCC and its management on patien...
-
Article
Open AccessHow 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
Demonstrating treatment benefits within clinical trials in the context of rare diseases is often methodologically and practically challenging. Mixed methods research offers an approach to overcome these challe...
-
Article
Open AccessSAGIT®: clinician-reported outcome instrument for managing acromegaly in clinical practice—development and results from a pilot study
The SAGIT instrument is a comprehensive clinician-reported outcome instrument assessing key features of acromegaly: signs and symptoms, associated comorbidities; growth hormone levels; insulin-like growth factor-...
-
Article
Open AccessImproving the primary care physicians' decision making for fibromyalgia in clinical practice: development and validation of the Fibromyalgia Detection (FibroDetect®) screening tool
Fibromyalgia diagnosis is a challenging and long process, especially among primary care physicians (PCPs), because of symptom heterogeneity, co-morbidities and clinical overlap with other disorders. The purpos...
-
Article
Linguistic Validation into 20 Languages and Content Validity of the Rheumatoid Arthritis-Specific Work Productivity and Activity Impairment Questionnaire
Impairments in work productivity and daily activities contribute to the burden of rheumatoid arthritis (RA). It is thus essential to use an instrument assessing both work and daily activity impairments when st...
-
Article
Patients’ Experience and Perception of Hospital-Treated Clostridium difficile Infections: a Qualitative Study
Clostridium difficile is the leading cause of antibiotic-associated diarrhea and an important source of nosocomial infection. Clinical manifestations can range from mild diarrhea to lethal pseu...
-
Protocol
Subcellular Fractionation of Small Sample Amounts
A central issue in proteomics is the generation of qualitative and quantitative protein inventories for a given tissue, organ, or organism. In many eukaryotes, this amounts to a formidable task. Mammals may ex...
-
Article
Open AccessEvaluation of the reliability and validity of the Medical Outcomes Study sleep scale in patients with painful diabetic peripheral neuropathy during an international clinical trial
Sleep is an important element of functioning and well-being. The Medical Outcomes Study Sleep Scale (MOS-Sleep) includes 12 items assessing sleep disturbance, sleep adequacy, somnolence, quantity of sleep, sno...
-
Article
Open AccessStudying the Hurdles of Insulin Prescription (SHIP©): development, scoring and initial validation of a new self-administered questionnaire
Although insulin therapy is well-accepted by symptomatic diabetic patients, it is still often delayed in less severe patients, in whom injectable insulin remains under-used. A better understanding of patients'...
-
Article
Open AccessDevelopment of the conceptual framework for the Eye-Drop Satisfaction Questionnaire (EDSQ©) in glaucoma using a qualitative study
Compliance is a major issue in glaucoma care. It is usually poor in glaucomatous patients, and may ultimately result in an acceleration of the disease progression and a risk of blindness. Reasons for this poor...
