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 2022-01-01 to 2026-01-01.)

Article	Citations
Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma	41
Prosocial Behaviour and Antibiotic Resistance: Evidence from a Discrete Choice Experiment	33
Exploring the Preferences of the Australian Public for Antibiotic Treatments: A Discrete Choice Experiment	33
Preferences of Patients with Amyotrophic Lateral Sclerosis for Intrathecal Drug Delivery: Choosing between an Implanted Drug-Delivery Device and Therapeutic Lumbar Puncture	32
Fighting to Breathe and Fighting for Health-Related Quality of Life: Measuring the Impact of Being Dependent on Technology for Breathing on the Child and Their Caregiver	31
Acknowledgement to Referees	28
Perspectives of Pediatric Rheumatologists on Initiating and Tapering Biologics in Patients with Juvenile Idiopathic Arthritis: A Formative Qualitative Study	28
Eliciting Patient Preferences for the Hospital at Home Programme in Singapore; A Discrete Choice Experiment	26
Gauging Incentive Values and Expectations (G.I.V.E.) among Blood Donors for Nonmonetary Incentives: Developing a Preference Elicitation Instrument through Qualitative Approaches in Shandong, China	18
Developing a Conceptual Framework for Socioeconomic Impact Research in European Cancer Patients: A ‘Best-Fit’ Framework Synthesis	18
Adverse Event Reporting in Cancer Clinical Trials: Incorporating Patient-Reported Methods. A Systematic Scoping Review	18
Exploring the Impact of a Context-Adapted Decision Aid and Online Training About Shared Decision Making About Goals of Care with Elderly Patients in the Intensive Care Unit: A Mixed-Methods Study	18
15th Meeting of the International Academy of Health Preference Research	18
Developing Tools for the Efficient Design of Health Preference Studies: Taxonomy of Attributes and Prototype of an Attribute Library	17
Exit Interviews to Understand Meaningful Change from the Patient Perspective in a Clinical Study of Dupilumab for the Treatment of Chronic Inducible Cold Urticaria	17
Patient and Public Preferences for Coordinated Care in Switzerland: Development of a Discrete Choice Experiment	16
Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review	16
Long-Term Improvement in the Patient-Reported Outcomes of Rectal Bleeding, Stool Frequency, and Health-Related Quality of Life with Tofacitinib in the Ulcerative Colitis OCTAVE Clinical Program	15
What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals	15
Patient Experience of Treatment with Tirzepatide for Weight Management: Exit Interviews from SURMOUNT-4	15
Correction to: Do Cash-For-Care Schemes Increase Care Users’ Experience of Empowerment? A Systematic Review	14
Getting Everyone on Board to Break the Cycle of Bacterial Vaginosis (BV) Recurrence: A Qualitative Study of Partner Treatment for BV	14
14th Meeting of the International Academy of Health Preference Research	13
Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study	12
Preferences for the Societal Impacts of a Pandemic when it Transitions into an Endemic: A Discrete Choice Experiment	12

A Systematic Literature Review of Preference Studies in Migraine Treatments	12
How do Design Characteristics Affect Respondent Engagement? Assessing Attribute Non-attendance in Discrete Choice Experiments Valuing the EQ-5D-5L	12
Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study	12
Time to See the Difference: Video Capture for Patient-Centered Clinical Trials	11
Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment	11
The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development	10
What Aspects of Quality of Life are Important from Palliative Care Patients’ Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings	10
A Novel Approach to Computing Preference Estimates for Different Treatment Pathways: An Application in Oncology	10
Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments	10
Determining the Content Validity of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D Instruments for Assessing Generic Child and Adolescent Health-Related Quality of Life: A Qualitative Study	10
Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment	9
Considering Clinical Implementation of Polygenic Scores in Hereditary Cancer Risk Assessment: Recipients’ Perspectives on Influencing Factors and Strategies	9
Correction: Exploring Consumers’ Motivations and Experiences of Engaging as Partners in Cancer Research	9
Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases	9
Measuring Patient Preferences to Inform Clinical Trial Design: An Example in Rheumatoid Arthritis	8
Factors influencing Patient Preferences for BRCA Testing and Adjuvant Therapy in HER2-Negative Early Breast Cancer in the United States: Best–Worst Scaling and Discrete Choice Experiment	8
Patients as Partners in Sickle Cell Disease Research in Africa: A Framework for Equitable Patient-Engaged Health Research	8
Quality of Life in Adults with Chronic Cough: A Mixed Methods Study Informing the Development of a Quantitative Patient Preference Study	8
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	8
Acknowledgement to Referees	8
Discrete Choice Experiment Versus Best–Worst Scaling: An Empirical Comparison in Eliciting Young People’s Preferences for Web-Based Mental Health Interventions	8
Patient-Centered Clinical Trial Design for Heart Failure Devices via Bayesian Decision Analysis	7
Evaluating Comprehensibility of 157 Patient-Reported Outcome Measures (PROMs) in the Nationwide Dutch Outcome-Based Healthcare Program: More Attention for Comprehensibility of PROMs is Needed	7
Validity and Responsiveness of EQ-5D in Asthma: A Systematic Review and Meta-analysis	7
So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience	7
A Best–Worst Scaling Study of the General Population's Preferences for Activities in Living Arrangements for Persons With Dementia	7
Discrete Choice Experiments to Elicit Patient Preferences for the Treatment of Major Depressive Disorder: A Systematic Review	7
Using Patient Preferences in Health Technology Assessment: Evaluating Quality-Adjusted Survival Equivalents (QASE) for the Quantification of Non-health Benefits	7
Correction to: How Does the Public Evaluate Vaccines for Low‑Incidence, Severe‑Outcome Diseases? A General‑Population Choice Experiment	7
Content Validity Assessment of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) Among Adults with Insomnia and Nocturia	7
16th Meeting of the International Academy of Health Preference Research	7
Determining Commonalities in the Experiences of Patients with Rare Diseases: A Qualitative Analysis of US Food and Drug Administration Patient Engagement Sessions	6
Current Practices and Challenges When Submitting Patient Experience Data for Regulatory Decisions by the US Food and Drug Administration: An Industry Survey	6
Development of an Item Bank to Assess Patient-Reported Outcomes: Signs, Symptoms, and Impacts of COVID-19	6
The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?	6
Stated Preferences of At-Risk Populations for the Treatment of Osteoporosis: A Systematic Review	6
Public Preferences and Willingness to Pay for a Multidisciplinary Colorectal and Pelvic Reconstruction Service	6
Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs)	6
A Systematic Review of Patient-Reported Measures for Individuals Who Underwent Genetic Testing for Heritable Cancer	6
A New Framework for Co-Creating Telehealth for Cancer Care with the Patient Community	6
Patients’ Experiences of Atopic Dermatitis and Nemolizumab Treatment: An In-Trial Interview Study Embedded in a Phase 3 Clinical Trial (ARCADIA)	6
Reducing Primary Healthcare Bypass Behaviour: A Discrete Choice Experiment Study Exploring the Preferences for Primary Eye Care Services in Rural Xinjiang	6
Patient Preferences in Diagnostic Imaging: A Scoping Review	5
Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe	5
The Pogo-ization of Post-Pandemic Vaccine Policy	5
Patient Preferences for Multi-Cancer Early Detection (MCED) Screening Tests	5
Preferences for the Use of Artificial Intelligence for Breast Cancer Screening in Australia: A Discrete Choice Experiment	5
Improvements to Survey Design from Pilot Testing a Discrete-Choice Experiment of the Preferences of Persons Living with HIV for Long-Acting Antiretroviral Therapies	5
Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children’s Involvement and Qualitative Methods	5
Concerns about the Responsiveness of Generic Measures and the Search for a “Minimally” Important Change: Today’s PRO Red Herrings	5

How Important is Healthcare-Contact Time to Systemic Treatment Decision-Making in Advanced Gastrointestinal Cancers: Developing Attributes to Include in a Discrete Choice Experiment	5
Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment	5
Evaluating the Preferences and Willingness-to-Pay for Oral Antidiabetic Drugs Among Patients with Type 2 Diabetes Mellitus in China: A Discrete Choice Experiment	5
FDA Guidance on Selecting, Developing, or Modifying Fit-for-Purpose Clinical Outcome Assessments: Old Wine in a New Bottle?	5
Exit Interviews Examining the Patient Experience in Clinical Trials of Tirzepatide for Treatment of Type 2 Diabetes	5
Methods to Summarize Discrete-Choice Experiments in a Systematic Review: A Scoping Review	5
Eliciting Older Cancer Patients’ Preferences for Follow-Up Care to Inform a Primary Healthcare Follow-Up Model in China: A Discrete Choice Experiment	5
Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?	5
Co-designing Healthcare Interventions with Users: A Discrete Choice Experiment to Understand Young People’s Preferences for Sexual and Reproductive Health Services in Lusaka, Zambia	4
Treatment Preference Research in Atopic Dermatitis: A Systematic Review of Quantitative Studies	4
Correction: Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study	4
A Qualitative Exploration of Patient and Staff Experiences of the Receipt and Delivery of Specialist Weight Management Services in the UK	4
Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework	4
Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research	4
What Do People Want from an AI-Assisted Screening App for Sexually Transmitted Infection-Related Anogenital Lesions: A Discrete Choice Experiment	4
Patients’ Preferences for Systemic Lupus Erythematosus Treatments—A Discrete Choice Experiment	4
Studying How Patient Engagement Influences Research: A Mixed Methods Study	4
Patient-Reported Outcomes in Early-Phase Oncology Clinical Trials: A Stepping Stone to a Patient-Centered Drug Development	3
Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in 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 in Anticoagulation Treatment: A Review of Discrete Choice Experiments	3
Impact of Difelikefalin on the Health-Related Quality of Life of Haemodialysis Patients with Moderate-To-Severe Chronic Kidney Disease-Associated Pruritus: A Single-Arm Intervention Trial	3
Patient Preferences for Pharmacy Services: A Systematic Review of Studies Based on Discrete Choice Experiments	3
Identifying and Managing Fraudulent Respondents in Online Stated Preferences Surveys: A Case Example from Best–Worst Scaling in Health Preferences Research	3
Which Factors Influence Decisions to Withdraw from Eculizumab: A Qualitative Study of Patients Diagnosed with aHUS	3
Increasing the Patient-Centeredness of Predictive Analytics Tools	3
A Review of the Use of EQ-5D for Clinical Outcome Assessment in Health Technology Assessment, Regulatory Claims, and Published Literature	3
Research Priorities to Increase Confidence in and Acceptance of Health Preference Research: What Questions Should be Prioritized Now?	3
A Foundation for Patient-Centered Core Impact Sets: Key Learnings from Past and Existing Approaches	3
Preferences for Adjuvant Immunotherapy in Adults with Resected Stage III Melanoma—A Discrete Choice Experiment	3
Decision Making About Disease-Modifying Treatments for Relapsing-Remitting Multiple Sclerosis: Stated Preferences and Real-World Choices	3
Putting the Choice in Choice Tasks: Incorporating Preference Elicitation Tasks in Health Preference Research	3
Subcutaneous Infusion of Benzathine Penicillin G Is Acceptable and Preferred Over Intramuscular Injections for Syphilis in Western Australian Sexual Health Clinic Attendees: A Mixed Methods Sub-study	3
Content Validity of the EQ-HWB in Caregivers of Children with Health Conditions	2
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	2
The Limitations of EQ-5D as a Clinical Outcome Assessment Tool	2
Using Best–Worst Scaling Survey to Investigate the Relative Importance of Attributes Associated with Public Hospital Outpatient Appointments	2
Correction: Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment	2
Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID	2
Preferences of People Living with HIV for Long-Acting Antiretroviral Treatment in Germany: Evidence from a Discrete Choice Experiment	2
Attribute Development and Level Selection for a Discrete Choice Experiment to Elicit Care Preferences of Older Adults and Informal Caregivers Aging in Place in The Netherlands	2
Practical considerations towards the collection of patient reported outcome data among hematopoietic cell transplant recipients	2
An Overview of Data Collection in Health Preference Research	2
Formative Research in the Codesign of a Discrete Choice Experiment with Patients with Myasthenia Gravis: Selecting and Refining Attributes, Levels and Scenarios	2
A Framework to Promote Implementation of Patient-Reported Outcomes in Institutions Caring for Vulnerable and Underserved Cancer Populations	2
What is the Most Valid and Reliable Compassion Measure in Healthcare? An Updated Comprehensive and Critical Review	2
Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments	2
Who Prefers Death to Life in Composite Time Trade-off Interviews, and Why? A Mixed-Methods Study among Asians in Singapore	2
ePROMs are Best Used Alongside ‘A High-Quality Conversation’ as Part of a Therapeutic Relationship. A Qualitative Study of Children with Life-Altering Skin Conditions	2
Women's Preferences in Early Pregnancy Loss Management: A Focus on Psychological Considerations Using the Analytic Hierarchy Process	2
Patient-Reported Meaningful Change in Symptoms and Impacts of Paroxysmal Nocturnal Hemoglobinuria (PNH) in Three Phase III Clinical Trials of Iptacopan	2
Qualitative In-trial Interviews: Methods, Challenges, and Best Practice	2
The Patient Voice: Exploring Treatment Preferences in Participants with Mild Cognitive Concerns to Inform Regulatory Decision Making	2
Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment	2