Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms | | 2022 |
Comparing patient global impression of severity and patient global impression of change to evaluate test–retest reliability of depression, non-small cell lung cancer, and asthma measures | Quality of Life Research | |
Meaningful Improvement in General Health Outcomes with Guselkumab Treatment for Psoriatic Arthritis: Patient-Reported Outcomes Measurement Information System-29 Results from a Phase 3 Study | Patient | |
Saving time and effort: Best practice for adapting existing patient-reported outcome measures in hepatology | World Journal of Hepatology | 2022 |
Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research: The PRO Ethics Guidelines. | JAMA - Journal of the American Medical Association | 2022 |
Establishing content validity of LIMB-Q Kids: a new patient-reported outcome measure for lower limb deformities. | Quality of Life Research | 2022 |
Selecting Outcome Measures | | |
Fundamentals of Biostatistics | | |
Quality of life in neurofibromatosis 1: development and validation of a tool dedicated to cutaneous neurofibromas in adults. | Journal of the European Academy of Dermatology and Venereology | 2022 |
Results on patient-reported outcomes are underreported in summaries of product characteristics for new drugs | Journal of Patient-Reported Outcomes | 2021 |
Psychometric validation and meaningful change thresholds of the Worst Itching Intensity Numerical Rating Scale for assessing itch in patients with chronic kidney disease-associated pruritus. | Journal of Patient-Reported Outcomes | 2021 |
Patient-reported outcomes in the regulatory approval of medical devices | Nature Medicine | 2021 |
Quality of Life Considerations on Fecal Incontinence | | |
Calibration of a physical functioning item bank for measurement of health-related quality of life in Singapore | Quality of Life Research | 2020 |
Communicative Participation After Head and Neck Cancer | | 2019 |
Concept of Alpha | ICSA Book Series in Statistics | 2017 |
Evidence-Based Medicine | | 2017 |
MEASUREMENT OF QUALITY OF LIFE IN ASTHMATIC CHILDREN AGED LESS THAN 5 YEARS | Indian Journal of Child Health | 2015 |
Risk evaluation and mitigation strategy assessments: Social science methodologies to assess goals related to knowledge | | |
Biomarkers and Endpoints in Rare Diseases | | |
3.Practical Use of QOL/PRO for Health Technology Assessment in Japan | Japanese Journal of Pharmacoepidemiology/Yakuzai Ekigaku | 2018 |
Reliability of an e-PRO Tool of EORTC QLQ-C30 for Measurement of Health-Related Quality of Life in Patients With Breast Cancer: Prospective Randomized Trial | Journal of Medical Internet Research | 2017 |
Individual Prognosis of Symptom Burden and Functioning in Chronic Diseases: A Generic Method Based on Patient-Reported Outcome (PRO) Measures | Journal of Medical Internet Research | 2017 |
Assessing the Comparability of Paper and Electronic Versions of the EORTC QOL Module for Head and Neck Cancer: A Qualitative Study | JMIR Cancer | 2017 |
Electronic-Based Patient-Reported Outcomes: Willingness, Needs, and Barriers in Adjuvant and Metastatic Breast Cancer Patients | JMIR Cancer | 2017 |
Fifteen Years' Use of Patient-Reported Outcome Measures at the Group and Patient Levels: Trend Analysis | Journal of Medical Internet Research | 2019 |
Health Data Processes: A Framework for Analyzing and Discussing Efficient Use and Reuse of Health Data With a Focus on Patient-Reported Outcome Measures | Journal of Medical Internet Research | 2019 |
The efficacy and safety of sarilumab, fully human monoclonal antibodies against interleukin 6 receptor, in rheumatoid arthritis: new evidence | Nauchno-Prakticheskaya Revmatologiya | 2019 |
An observational study examining the relationship between respiratory symptoms, airway inflammation and bacteriology in children with severe neurodisability | PLoS ONE | 2015 |
A Psychometric Evaluation of the Motor-Behavioral Assessment Scale for Use as an Outcome Measure in Rett Syndrome Clinical Trials | American Journal on Intellectual and Developmental Disabilities | 2020 |
The Treatment-induced Neuropathy Assessment Scale (TNAS): a psychometric update following qualitative enrichment | Journal of Patient-Reported Outcomes | 2020 |
Criteria for gauging response to sodium oxybate for narcolepsy | Journal of Sleep Research | 2018 |
Patient-reported Outcomes (PROs) in clinical trials in paediatric dentistry | International Journal of Paediatric Dentistry | 2020 |
Advancing Interpretation of Patient-Reported Outcomes | ICSA Book Series in Statistics | 2018 |
Use of Proxies and Informants | | 2012 |
Biometrie | | 2013 |
A Guide to PROMs Methodology and Selection Criteria | | 2016 |
The Question of Value | | 2016 |
Commercially Available Bioengineered Cartilage Grafts | | 2020 |
Rare Diseases and Orphan Drugs | | |
Quality of Life in Primary Open-Angle Glaucoma and Cataract: An Analysis of VFQ-25 and OSDI From the iStent inject® Pivotal Trial | American Journal of Ophthalmology | 2021 |
Confirmatory psychometric evaluations of the Impact of Weight on Quality of Life-Lite Clinical Trials Version (IWQOL-Lite-CT) | Clinical Obesity | 2021 |
Using Item Response Theory to Identify Responders to Treatment: Examples with the Patient-Reported Outcomes Measurement Information System (PROMIS®) Physical Function Scale and Emotional Distress Composite | Psychometrika | 2021 |
What does the patient have to say? Valuing the patient experience to improve the patient journey | BMC Health Services Research | 2021 |
Health-related quality of life in adults with osteogenesis imperfecta | Clinical Genetics | 2021 |
Value-based approach to blood pressure telemonitoring and remote counseling in hypertensive patients | Blood Pressure | 2021 |
Living with Stargardt disease: insights from patients and their parents | Ophthalmic Genetics | 2021 |
Development of the symptoms and impacts questionnaire for Crohn's disease and ulcerative colitis | Alimentary Pharmacology and Therapeutics | 2020 |
Qualitative study of patients with venous malformations: symptom experiences and content validity of patient-reported outcome measures | Quality of Life Research | 2020 |
Efficacy and safety of immediate oral intake in patients with mild acute pancreatitis: A randomized controlled trial | Nutrition | 2020 |
Performance of laser-derived imaging for assessing digital perfusion in clinical trials of systemic sclerosis-related digital vasculopathy: A systematic literature review | Seminars in Arthritis and Rheumatism | 2020 |
'Mapping' Health State Utility Values from Non-preference-Based Measures: A Systematic Literature Review in Rare Diseases | Pharmacoeconomics | 2020 |
Patient Experiences with Avelumab in Treatment-Naïve Metastatic Merkel Cell Carcinoma: Longitudinal Qualitative Interview Findings from JAVELIN Merkel 200, a Registrational Clinical Trial | Patient | 2020 |
Development and validation of the communication and language assessment questionnaire for persons with multiple sclerosis (CLAMS) | Multiple Sclerosis and Related Disorders | 2020 |
Self-efficacy instruments for type 2 diabetes self-care: A systematic review of measurement properties | Journal of Advanced Nursing | 2020 |
Update on the psychometric properties and minimal important difference (MID) thresholds of the FACT-M questionnaire for use in treatment-naïve and previously treated patients with metastatic Merkel cell carcinoma | Health and Quality of Life Outcomes | 2020 |
Stakeholder Development of an Online Program to Track Arthritis-Related Patient-Reported Outcomes Longitudinally: Live Yes! INSIGHTS | ACR Open Rheumatology | 2020 |
Is the minimal clinically important difference (MCID) in acute pain a good measure of analgesic efficacy in regional anesthesia? | Regional Anesthesia and Pain Medicine | 2020 |
eHealth-mind the gap | Acta Oncológica | 2020 |
Evaluation of the health-related quality of life in Turkish cystic fibrosis patients | Pediatrics International | 2021 |
Evaluation of the Content Validity and Cross-Cultural Validity of the Study Participant Feedback Questionnaire (SPFQ) | Therapeutic Innovation and Regulatory Science | 2020 |
Validation of the Musculoskeletal Health Questionnaire (MSK-HQ) in primary care patients with musculoskeletal pain | Seminars in Arthritis and Rheumatism | 2020 |
Pediatric Outcomes Data Collection Instrument is a Useful Patient-Reported Outcome Measure for Physical Function in Children with Osteogenesis Imperfecta | Genetics in Medicine | 2020 |
Patient-reported outcome measures for diabetes self-care: A systematic review of measurement properties | International Journal of Nursing Studies | 2020 |
A systematic review of psychometric assessment of the Jefferson Scale of Empathy using the COSMIN Risk of Bias checklist | Journal of Evaluation in Clinical Practice | 2020 |
Prospective development of a patient-reported outcomes instrument for desmoid tumors or aggressive fibromatosis | Cancer | 2020 |
"Lower abdominal pains, as if I was being squeezed…in a clamp": A Qualitative Analysis of Symptoms, Patient-Perceived Side Effects and Impacts of Ovarian Cancer | Patient | 2020 |
The 88-item Multiple Sclerosis Spasticity Scale: a Rasch validation of the Italian version and suggestions for refinement of the original scale | Quality of Life Research | 2019 |
Symptoms and Impacts in Metastatic Castration-Resistant Prostate Cancer: Qualitative Findings from Patient and Physician Interviews | Patient | 2019 |
Graft Versus Host Disease Clinical Trials: Is it Time for Patients Centered Outcomes to Be the Primary Objective? | Current Hematologic Malignancy Reports | 2019 |
Measuring subjective wellbeing in patients with heart disease: relationship and comparison between health-related quality of life instruments | Quality of Life Research | 2019 |
Training on the Use of Technology to Collect Patient-Reported Outcome Data Electronically in Clinical Trials: Best Practice Recommendations from the ePRO Consortium | Therapeutic Innovation and Regulatory Science | 2019 |
Best Practices for Avoiding Paper Backup When Implementing Electronic Approaches to Patient-Reported Outcome Data Collection in Clinical Trials | Therapeutic Innovation and Regulatory Science | 2019 |
Patient-reported outcomes in stroke clinical trials 2002-2016: a systematic review | Quality of Life Research | 2019 |
Development of a patient-reported outcomes symptom measure for patients with nontransfusion-dependent thalassemia (NTDT-PRO ) | American Journal of Hematology | 2019 |
Usability testing of EirV3-a computer-based tool for patient-reported outcome measures in cancer | Supportive Care in Cancer | 2019 |
Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology | Value in Health | 2019 |
Reliability and between-group stability of a health-related quality of life symptom index for persons with anal high-grade squamous intraepithelial lesions: an AIDS Malignancy Consortium Study (AMC-A03) | Quality of Life Research | 2019 |
The role of patient-reported outcomes in outpatients receiving active anti-cancer treatment: impact on patients' quality of life | Supportive Care in Cancer | 2019 |
Validation of a new measure of quality of life in obesity trials: Impact of Weight on Quality of Life-Lite Clinical Trials Version | Clinical Obesity | 2019 |
Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) | Aging Clinical and Experimental Research | 2019 |
Natural history of fibrodysplasia ossificans progressiva: cross-sectional analysis of annotated baseline phenotypes | Orphanet Journal of Rare Diseases | 2019 |
Validity Beyond Measurement: Why Psychometric Validity Is Insufficient for Valid Psychotherapy Research | Frontiers in Psychology | 2019 |
Development of a Patient-Reported Outcome Measure for Chronic Hypoparathyroidism | Advances in Therapy | 2019 |
The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology | Quality of Life Research | 2019 |
Advancing the use of patient-reported outcomes in practice: understanding challenges, opportunities, and the potential of health information technology | Quality of Life Research | 2019 |
Comparing the patients' subjective experiences of acute side effects during radiotherapy for head and neck cancer with four different patient-reported outcomes questionnaires | Acta Oncológica | 2019 |
Psychometric evaluation of the PROMIS® Depression Item Bank: an illustration of classical test theory methods | Journal of Patient-Reported Outcomes | 2019 |
An overview of using qualitative techniques to explore and define estimates of clinically important change on clinical outcome assessments | Journal of Patient-Reported Outcomes | 2019 |
Patient-reported outcomes | | 2019 |
Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C | Quality of Life Research | 2019 |
Analysis of Clinical Trial Exit Interview Data in Patients with Treatment-Resistant Depression | Patient | 2019 |
Quality of life outcomes in multiple myeloma patients: a summary of recent clinical trials | Expert Review of Hematology | 2019 |
State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory | Journal of Patient-Reported Outcomes | 2019 |
A Conceptual Model of Angelman Syndrome and Review of Relevant Clinical Outcomes Assessments (COAs) | Patient | 2019 |
Concept domain validation and item generation for the Treatment-Induced Neuropathy Assessment Scale (TNAS) | Supportive Care in Cancer | 2019 |
Minimal clinically important difference (MCID) for work productivity and activity impairment (WPAI) questionnaire in psoriasis patients | Journal of the European Academy of Dermatology and Venereology | 2019 |
Assessing the Impact of Growth Hormone Deficiency (GHD) in Adults: Interpreting Change of the Treatment-Related Impact Measure-Adult Growth Hormone Deficiency (TRIM-AGHD) | PharmacoEconomics - Open | 2019 |
Patient-Reported Outcome Measures: Development and Psychometric Evaluation | ICSA Book Series in Statistics | 2018 |
Feasibility and Psychometric Properties of the Infant Toddler Quality of Life (ITQOL) Questionnaire in a Community-Based Sample of Healthy Infants in China | Maternal and Child Health Journal | 2018 |
Patient-reported outcomes in patients with overactive bladder treated with mirabegron and tolterodine in a prospective, double-blind, randomized, two-period crossover, multicenter study (PREFER) | Health and Quality of Life Outcomes | 2018 |
A mini-review of quality of life as an outcome in prostate cancer trials: patient-centered approaches are needed to propose appropriate treatments on behalf of patients | Health and Quality of Life Outcomes | 2018 |
How patient participation was used to develop a questionnaire that is fit for purpose for assessing quality of life in severe asthma | Health and Quality of Life Outcomes | 2018 |
Psychometric evaluation of a caregiver diary for the assessment of symptoms of respiratory syncytial virus | Journal of Patient-Reported Outcomes | 2017 |
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 | Orphanet Journal of Rare Diseases | 2018 |
Clinical outcomes of childhood craniopharyngioma: can we do better? | Endocrine | 2018 |
Combining online and in-person methods to evaluate the content validity of PROMIS fatigue short forms in rheumatoid arthritis | Quality of Life Research | 2018 |
Impact of elotuzumab treatment on pain and health-related quality of life in patients with relapsed or refractory multiple myeloma: results from the ELOQUENT-2 study | Annals of Hematology | 2018 |
Modification of existing patient-reported outcome measures: qualitative development of the MD Anderson Symptom Inventory for malignant pleural mesothelioma (MDASI-MPM) | Quality of Life Research | 2018 |
COMPASS-CP: An Electronic Application to Capture Patient-Reported Outcomes to Develop Actionable Stroke and Transient Ischemic Attack Care Plans | Circulation: Cardiovascular Quality and Outcomes | 2018 |
A prospective observational study to assess clinical decision-making, prognosis, quality of life and satisfaction with care in patients with relapsed/refractory multiple myeloma: the CLARITY study protocol | Health and Quality of Life Outcomes | 2018 |
Self-rated health, quality of life and appetite as predictors of initiation of dialysis and mortality in patients with chronic kidney disease stages 4-5: a prospective cohort study | BMC Research Notes | 2018 |
Calibrating the Impact of Vision Impairment (IVI): Creation of a Sample-Independent Visual Function Measure for Patient-Centered Outcomes Research | Translational Vision Science and Technology | 2018 |
Evaluating methodological quality of Prognostic models Including Patient-reported HeAlth outcomes iN oncologY (EPIPHANY): a systematic review protocol | BMJ Open | 2018 |
Reflection paper on copyright, patient-reported outcome instruments and their translations | Health and Quality of Life Outcomes | 2018 |
Minimal clinically important difference of voice handicap index-10 in vocal fold paralysis | Laryngoscope | 2018 |
Challenges of developing and conducting clinical trials in rare disorders | American Journal of Medical Genetics, Part A | 2018 |
Clinical evaluation of a new pressure ulcer risk assessment instrument, the Pressure Ulcer Risk Primary or Secondary Evaluation Tool (PURPOSE T) | Journal of Advanced Nursing | 2018 |
Comparison of the Sensitivity to Change of the 36-Item Short Form Health Survey and the Lupus Quality of Life Measure Using Various Definitions of Minimum Clinically Important Differences in Patients With Active Systemic Lupus Erythematosus | Arthritis Care and Research | 2018 |
Call for action: how to improve use of patient-reported outcomes to guide clinical decision making in rheumatoid arthritis | Rheumatology International | 2018 |
Patient-reported outcomes in relapsed/refractory multiple myeloma: a systematic review | Supportive Care in Cancer | 2018 |
Patient-Reported Outcome (PRO) Consortium translation process: consensus development of updated best practices | Journal of Patient-Reported Outcomes | 2017 |
Development of a novel observer-reported outcome measure for the assessment of Respiratory Syncytial Virus (RSV) infection symptoms in pediatric clinical trials | Journal of Patient-Reported Outcomes | 2017 |
Patient reported outcome measures in rare diseases: a narrative review | Orphanet Journal of Rare Diseases | 2018 |
Pharmaceutical care and health related quality of life outcomes over the past 25 years: Have we measured dimensions that really matter? | International Journal of Clinical Pharmacy | 2018 |
Impact of Canagliflozin Treatment on Health-Related Quality of Life among People with Type 2 Diabetes Mellitus: A Pooled Analysis of Patient-Reported Outcomes from Randomized Controlled Trials | Patient | 2018 |
Evaluation of patient-reported outcome protocol content and reporting in UK cancer clinical trials: the EPiC study qualitative protocol | BMJ Open | 2018 |
The challenge of establishing treatment efficacy for cutaneous vascular manifestations of systemic sclerosis | Expert Review of Clinical Immunology | 2018 |
Development of a new patient-reported outcome (PRO) measure on the Impact of Nighttime Urination (INTU) in patients with nocturia-Psychometric validation | Neurourology and Urodynamics | 2018 |
Development of the Impact of Nighttime Urination (INTU) questionnaire to assess the impact of nocturia on health and functioning | Neurourology and Urodynamics | 2018 |
Qualitative Methods to Advance Care, Diagnosis, and Therapy in Rheumatic Diseases | Rheumatic Disease Clinics of North America | 2018 |
Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis | Arthritis Care and Research | 2018 |
Comparison of rates of nausea side effects for prescription medications from an online patient community versus medication labels: an exploratory analysis | AAPS Open | 2017 |
Initial psychometric validation of the questionnaire on pain caused by spasticity (QPS) | Health and Quality of Life Outcomes | 2017 |
Validity and test retest reliability of the vascular quality of life Questionnaire-6: a short form of a disease-specific health-related quality of life instrument for patients with peripheral arterial disease | Health and Quality of Life Outcomes | 2017 |
Effects of an interactive mHealth innovation for early detection of patient-reported symptom distress with focus on participatory care: protocol for a study based on prospective, randomised, controlled trials in patients with prostate and breast cancer | BMC Cancer | 2017 |
Spanish Cultural Adaptation of the Questionnaire Early Arthritis for Psoriatic Patients | Actas Dermo-sifiliográficas | 2017 |
A Review of HIV-Specific Patient-Reported Outcome Measures | Patient | 2017 |
Impact of Measuring Patient-Reported Outcomes in Dermatology Drug Development | Patient | 2017 |
Content Validity for the VVSymQ Instrument: A New Patient-Reported Outcome Measure for the Assessment of Varicose Veins Symptoms | Patient | 2017 |
Evolving Concepts in Phases I and II Drug Development for Crohn's Disease | Journal of Crohn's and Colitis | 2017 |
An interactive ICT platform for early assessment and management of patient-reported concerns among older adults living in ordinary housing - development and feasibility | Journal of Clinical Nursing | 2017 |
Evaluation of the impact of once weekly dulaglutide on patient-reported outcomes in Japanese patients with type 2 diabetes: comparisons with liraglutide, insulin glargine, and placebo in two randomized studies | Health and Quality of Life Outcomes | 2017 |
Effect of patient-initiated versus fixed-interval telePRO-based outpatient follow-up: study protocol for a pragmatic randomised controlled study | BMC Health Services Research | 2017 |
Multidimensional daily diary of fatigue-fibromyalgia-17 items (MDF-fibro-17). part 1: development and content validity | BMC Musculoskeletal Disorders | 2017 |
Development of the Tailored Rett Intervention and Assessment Longitudinal (TRIAL) database and the Rett Evaluation of Symptoms and Treatments (REST) Questionnaire | BMJ Open | 2017 |
Spanish Cultural Adaptation of the Questionnaire Early Arthritis for Psoriatic Patients | Actas Dermo-sifiliográficas | 2017 |
Patient-Reported Outcome Measures in Routine Clinical Care: The PROMise of a Better Future? | Digestive Diseases and Sciences | 2017 |
A systematic review of the quality of statistical methods employed for analysing quality of life data in cancer randomised controlled trials | European Journal of Cancer | 2017 |
Patient-reported outcomes in hematology: is it time to focus more on them in clinical trials and hematology practice? | Blood | 2017 |