OOIR: Observatory of International Research

Papers

(The median citation count of Patient-Patient Centered Outcomes Research is 2. The table below lists those papers that are above that threshold based on CrossRef citation counts [max. 250 papers]. The publications cover those that have been published in the past four years, i.e., from 2020-11-01 to 2024-11-01.)

Article	Citations
Conducting Qualitative Research Online: Challenges and Solutions	73
United States COVID-19 Vaccination Preferences (CVP): 2020 Hindsight	46
The Use of Patient-Reported Outcome Measures in Rare Diseases and Implications for Health Technology Assessment	41
Patient-Reported Outcomes Through 1 Year of an HIV-1 Clinical Trial Evaluating Long-Acting Cabotegravir and Rilpivirine Administered Every 4 or 8 Weeks (ATLAS-2M)	38
Respondent Understanding in Discrete Choice Experiments: A Scoping Review	37
Development of a Patient-Reported Outcome Measure for Non-Alcoholic Steatohepatitis (NASH-CHECK): Results of a Qualitative Study	36
Eliciting Preferences for HIV Prevention Technologies: A Systematic Review	35
Developing a Framework for Public Involvement in Mathematical and Economic Modelling: Bringing New Dynamism to Vaccination Policy Recommendations	27
Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development	27
Exploring the Trade-Off Between Economic and Health Outcomes During a Pandemic: A Discrete Choice Experiment of Lockdown Policies in Australia	27
Time for Tele-TTO? Lessons Learned From Digital Interviewer-Assisted Time Trade-Off Data Collection	25
The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews	22
Development and Validation of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ)	21
A Systematic Review of Discrete Choice Experiments in Oncology Treatments	20
What is the Most Valid and Reliable Compassion Measure in Healthcare? An Updated Comprehensive and Critical Review	19
QALYs for COVID-19: A Comparison of US EQ-5D-5L Value Sets	18
Patient and Public Involvement in Health Economics and Outcomes Research	18
What Factors Influence Non-Participation Most in Colorectal Cancer Screening? A Discrete Choice Experiment	17
Patient-Reported Experience and Outcome Measures in People Living with Diabetes: A Scoping Review of Instruments	16
Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID	16
Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study	16
Patient-Centered Core Impact Sets: What They are and Why We Need Them	15
Health Literacy: The Common Denominator of Healthcare Progress	14
Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments	14
Women’s Experiences of and Perspectives on Transvaginal Mesh Surgery for Stress Urine Incontinency and Pelvic Organ Prolapse: A Qualitative Systematic Review	14

Benefit–Risk or Risk–Benefit Trade-Offs? Another Look at Attribute Ordering Effects in a Pilot Choice Experiment	14
Public Preferences for Allocating Ventilators in an Intensive Care Unit: A Discrete Choice Experiment	14
A Systematic Review of Discrete Choice Experiments and Conjoint Analysis on Genetic Testing	13
Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions	12
Patient Preferences for Multi-Cancer Early Detection (MCED) Screening Tests	12
Opportunities to Improve Long COVID Care: Implications from Semi-structured Interviews with Black Patients	12
Rethinking Patient Engagement in Cancer Research	12
Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses	11
Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review	11
Patient and Public Preferences for Coordinated Care in Switzerland: Development of a Discrete Choice Experiment	10
Exploring the Comparability of Face-to-Face Versus Video Conference-Based Composite Time Trade-Off Interviews: Insights from EQ-5D-Y-3L Valuation Studies in Belgium and Spain	10
Exit Interviews Examining the Patient Experience in Clinical Trials of Tirzepatide for Treatment of Type 2 Diabetes	10
Patient Perceptions Regarding Multiple Myeloma and Its Treatment: Qualitative Evidence from Interviews with Patients in the United Kingdom, France, and Germany	10
Valuing End-of-Life Care for Older People with Advanced Cancer: Is Dying at Home Important?	10
What Author Instructions Do Health Journals Provide for Writing Plain Language Summaries? A Scoping Review	10
A Standard Set of Value-Based Patient-Centered Outcomes and Measures of Overall Health in Adults	10
FDA Guidance on Selecting, Developing, or Modifying Fit-for-Purpose Clinical Outcome Assessments: Old Wine in a New Bottle?	9
Designing HIV Testing and Self-Testing Services for Young People in Nigeria: A Discrete Choice Experiment	9
Should I Have Adjuvant Immunotherapy? An Interview Study Among Adults with Resected Stage 3 Melanoma and Their Partners	9
Mobilising the Next Generation of Stated-Preference Studies: the Association of Access Device with Choice Behaviour and Data Quality	9
Interpreting Within-Patient Changes on the EORTC QLQ-C30 and EORTC QLQ-LC13	9
Patients’ Preferences for Connected Insulin Pens: A Discrete Choice Experiment Among Patients with Type 1 and Type 2 Diabetes	9
Methodological Priorities for Patient Preferences Research: Stakeholder Input to the PREFER Public–Private Project	9
Don’t Forget the Caregivers! A Discrete Choice Experiment Examining Caregiver Views of Integrated Youth Services	9
A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy	9
An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis	9
Comparing Patient Preferences for Antithrombotic Treatment During the Acute and Chronic Phases of Myocardial Infarction: A Discrete-Choice Experiment	8
Process- and Outcome-Based Financial Incentives to Improve Self-Management and Glycemic Control in People with Type 2 Diabetes in Singapore: A Randomized Controlled Trial	8
Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs)	8
The Impact of Patient Support Programs in Europe: A Systematic Literature Review	8
Improvements to Survey Design from Pilot Testing a Discrete-Choice Experiment of the Preferences of Persons Living with HIV for Long-Acting Antiretroviral Therapies	8
Pretesting Discrete-Choice Experiments: A Guide for Researchers	8
Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Dis	8
How to Present a Decision Object in Health Preference Research: Attributes and Levels, the Decision Model, and the Descriptive Framework	7
Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study	7
Willingness to Wait for a Vaccine Against COVID-19: Results of a Preference Survey	7
The Impact of the Risk Functional Form Assumptions on Maximum Acceptable Risk Measures	7
Patient Perspectives and Experiences of Preventive Treatments and Self-Injectable Devices for Migraine: A Focus Group Study	7
Patient and Public Involvement Refines the Design of ProtOeus: A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer	6
Adaptation of a Shared Decision-Making Tool for Early Rheumatoid Arthritis Treatment Decisions with Indigenous Patients	6
Time to See the Difference: Video Capture for Patient-Centered Clinical Trials	6
Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments	6
Operationalizing the Chronic Care Model with Goal-Oriented Care	6
Comment on Health Literacy: The Common Denominator of Healthcare Progress	6
Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences	5
Preference Paths and Their Kaizen Tasks for Small Samples	5
A New Approach to Assessing Children’s Interpretation of Severity Qualifiers in a Multi-Attribute Utility Instrument–The EQ-5D-Y-5L: Development and Testing	5
Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in a Discrete Choice Experiment	5
Public Preferences in Priority Setting when Admitting Patients to the ICU During the COVID-19 Crisis: A Pilot Study	5
Face Validity of Four Preference-Weighted Quality-of-Life Measures in Residential Aged Care: A Think-Aloud Study	5

What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals	5
Determinants of Health Preferences Using Data from the Egyptian EQ-5D-5L Valuation Study	5
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	5
Perspectives of Pediatric Rheumatologists on Initiating and Tapering Biologics in Patients with Juvenile Idiopathic Arthritis: A Formative Qualitative Study	5
Stated-Preference Survey Design and Testing in Health Applications	5
A Systematic and Critical Review of Discrete Choice Experiments in Asthma and Chronic Obstructive Pulmonary Disease	5
How Do People with Experience of Infertility Value Different Aspects of Assistive Reproductive Therapy? Results from a Multi-Country Discrete Choice Experiment	5
A Guide to Observable Differences in Stated Preference Evidence	5
Public Preferences for Government Response Policies on Outbreak Control	4
What Are the Preferences of Patients With Rheumatoid Arthritis for Treatment Modification? A Scoping Review	4
Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe	4
The Impact of Video-Based Educational Materials with Voiceovers on Preferences for Glucose Monitoring Technology in Patients with Diabetes: A Randomised Study	4
Methods to Summarize Discrete-Choice Experiments in a Systematic Review: A Scoping Review	4
Patient-Reported Outcomes in the Phase III BRIGHTE Trial of the HIV-1 Attachment Inhibitor Prodrug Fostemsavir in Heavily Treatment-Experienced Individuals	4
Student-Athlete Preferences for Sexual Violence Reporting: A Discrete Choice Experiment	4
Using Societal Values to Inform Public Health Policy During the COVID-19 Pandemic: The Role of Health Preference Research	4
Will the Public Engage with New Pharmacy Roles? Assessing Future Uptake of a Community Pharmacy Health Check Using a Discrete Choice Experiment	4
Assessing Patient Preferences in Rare Diseases: Direct Preference Elicitation in the Rare Chronic Kidney Disease, Immunoglobulin A Nephropathy	4
A Qualitative Exploration of Patient and Staff Experiences of the Receipt and Delivery of Specialist Weight Management Services in the UK	4
Discordance Between Advanced Cancer Patients’ Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care	3
Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment	3
The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review	3
A Review of the Use of EQ-5D for Clinical Outcome Assessment in Health Technology Assessment, Regulatory Claims, and Published Literature	3
Testing and Psychometric Validation of a Pediatric Instrument to Self-Assess Symptoms of the Common Cold	3
Preferences for Treatments for Major Depressive Disorder: Formative Qualitative Research Using the Patient Experience	3
Patient Preferences for Pharmacy Services: A Systematic Review of Studies Based on Discrete Choice Experiments	3
Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research	3
Experiences and Perspectives of Patients with Non-HIV-Associated Lipodystrophies and Their Caregivers: A Qualitative Study	3
Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs)	3
Patient-Reported Outcome Measures Used for Assessing Breast Sensation after Mastectomy: Not Fit for Purpose	3
Preferences and Experiences Regarding the Use of the Self-Sampling Device in hrHPV Screening for Cervical Cancer	3
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members	3
Validated Tools to Measure Costs for Patients: A Systematic Review	3
Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS	3
From Qualitative Research to Quantitative Preference Elicitation: An Example in Invasive Meningococcal Disease	3
Conducting Patient-Oriented Research in Low-Income and Middle-Income Countries: A Scoping Review	3
Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment	3
Methods for Conducting Stated Preference Research with Children and Adolescents in Health: A Scoping Review of the Application of Discrete Choice Experiments	3
Identifying New Zealand Public Preferences for Pharmacist Prescribers in Primary Care: A Discrete Choice Experiment	3
How Does the Public Evaluate Vaccines for Low-Incidence, Severe-Outcome Diseases? A General-Population Choice Experiment	3
Patient Preferences for Attributes that Characterise Alternative Models of Care in Gastroenterology: A Discrete Choice Experiment	3
Towards Accurate Prediction of Healthcare Choices: The INTERSOCIAL Project	3
Research Priorities to Increase Confidence in and Acceptance of Health Preference Research: What Questions Should be Prioritized Now?	2
Patient Experience Data for Medical Product Development: Opportunity Beyond Obligation	2
Maximum Acceptable Risk Estimation Based on a Discrete Choice Experiment and a Probabilistic Threshold Technique	2
Patient Preferences of Low-Dose Aspirin for Cardiovascular Disease and Colorectal Cancer Prevention in Italy: A Latent Class Analysis	2
Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study	2
Patient Medication Preferences for Managing Dry Eye Disease: The Importance of Medication Side Effects	2
A Foundation for Patient-Centered Core Impact Sets: Key Learnings from Past and Existing Approaches	2
So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience	2
Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptabili	2
Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example	2
The Pogo-ization of Post-Pandemic Vaccine Policy	2
Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study	2
Current Practices and Challenges When Submitting Patient Experience Data for Regulatory Decisions by the US Food and Drug Administration: An Industry Survey	2
Patient-Evaluated Quality of Care is Related to Better Inflammatory Bowel Disease Outcomes: The IQCARO II Project	2
Developing a Conceptual Framework for Socioeconomic Impact Research in European Cancer Patients: A ‘Best-Fit’ Framework Synthesis	2
Quality of Life in Adults with Chronic Cough: A Mixed Methods Study Informing the Development of a Quantitative Patient Preference Study	2
Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases	2
Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment	2
Regulating Between the Notes: The US FDA and the Evolution of the Patient Voice Through Twenty-First Century Regulatory Science	2
Role Preferences in Medical Decision Making: Relevance and Implications for Health Preference Research	2
Consumer Preferences for a Healthcare Appointment Reminder in Australia: A Discrete Choice Experiment	2