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 2022-05-01 to 2026-05-01.)

Article	Citations
Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma	53
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	43
Exploring the Preferences of the Australian Public for Antibiotic Treatments: A Discrete Choice Experiment	38
Preferences of Patients with Amyotrophic Lateral Sclerosis for Intrathecal Drug Delivery: Choosing between an Implanted Drug-Delivery Device and Therapeutic Lumbar Puncture	37
Patient Preferences Regarding Menopausal Symptoms and Treatments: A Systematic Review of Quantitative Stated-Preference Studies	37
Prosocial Behaviour and Antibiotic Resistance: Evidence from a Discrete Choice Experiment	27
Eliciting Patient Preferences for the Hospital at Home Programme in Singapore; A Discrete Choice Experiment	21
Acknowledgement to Referees	21
Putting Patient Voices at the Heart of Healthcare Decisions: The UNIFIED Public-Private Project	21
Developing a Conceptual Framework for Socioeconomic Impact Research in European Cancer Patients: A ‘Best-Fit’ Framework Synthesis	20
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	20
Exit Interviews to Understand Meaningful Change from the Patient Perspective in a Clinical Study of Dupilumab for the Treatment of Chronic Inducible Cold Urticaria	19
Adverse Event Reporting in Cancer Clinical Trials: Incorporating Patient-Reported Methods. A Systematic Scoping Review	19
15th Meeting of the International Academy of Health Preference Research	19
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
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	16
Developing Tools for the Efficient Design of Health Preference Studies: Taxonomy of Attributes and Prototype of an Attribute Library	16
What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals	16
Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review	16
Getting Everyone on Board to Break the Cycle of Bacterial Vaginosis (BV) Recurrence: A Qualitative Study of Partner Treatment for BV	15
Patient Experience of Treatment with Tirzepatide for Weight Management: Exit Interviews from SURMOUNT-4	15
14th Meeting of the International Academy of Health Preference Research	14
Preferences for the Societal Impacts of a Pandemic when it Transitions into an Endemic: A Discrete Choice Experiment	13
Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment	13
How do Design Characteristics Affect Respondent Engagement? Assessing Attribute Non-attendance in Discrete Choice Experiments Valuing the EQ-5D-5L	13

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	13
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	13
Chinese Patient Preferences and Trade-Offs for Therapy-Related Attributes of Anti-Vascular Endothelial Growth Factor Agents in Diabetic Macular Edema and Neovascular Age-Related Macular Degeneration:	13
A Systematic Literature Review of Preference Studies in Migraine Treatments	12
Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study	12
Correction to: Do Cash-For-Care Schemes Increase Care Users’ Experience of Empowerment? A Systematic Review	12
The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development	11
A Novel Approach to Computing Preference Estimates for Different Treatment Pathways: An Application in Oncology	11
Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study	11
Considering Clinical Implementation of Polygenic Scores in Hereditary Cancer Risk Assessment: Recipients’ Perspectives on Influencing Factors and Strategies	10
Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment	10
Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments	10
Patient Preferences for Hypertension Treatment Outcomes: A Quantitative Field Study Using the Analytic Hierarchy Process	10
Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases	10
Acknowledgement to Referees	9
Severity or Incidence: Labeling Side-Effect Attributes in Discrete Choice Experiments	9
Quality of Life in Adults with Chronic Cough: A Mixed Methods Study Informing the Development of a Quantitative Patient Preference Study	9
Measuring Patient Preferences to Inform Clinical Trial Design: An Example in Rheumatoid Arthritis	9
Patients as Partners in Sickle Cell Disease Research in Africa: A Framework for Equitable Patient-Engaged Health Research	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
Correction: Exploring Consumers’ Motivations and Experiences of Engaging as Partners in Cancer Research	8
Discrete Choice Experiment Versus Best–Worst Scaling: An Empirical Comparison in Eliciting Young People’s Preferences for Web-Based Mental Health Interventions	8
So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience	8
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
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
A Best–Worst Scaling Study of the General Population's Preferences for Activities in Living Arrangements for Persons With Dementia	7
Determining Commonalities in the Experiences of Patients with Rare Diseases: A Qualitative Analysis of US Food and Drug Administration Patient Engagement Sessions	7
Content Validity Assessment of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) Among Adults with Insomnia and Nocturia	7
Patient-Centered Clinical Trial Design for Heart Failure Devices via Bayesian Decision Analysis	7
Discrete Choice Experiments to Elicit Patient Preferences for the Treatment of Major Depressive Disorder: A Systematic Review	7
Validity and Responsiveness of EQ-5D in Asthma: A Systematic Review and Meta-analysis	7
The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?	7
Preferences for Healthcare Delivery in Amyotrophic Lateral Sclerosis (ALS): A Survey of Patients and Caregivers in the United States	7
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	7
A Systematic Review of Patient-Reported Measures for Individuals Who Underwent Genetic Testing for Heritable Cancer	7
Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs)	7
16th Meeting of the International Academy of Health Preference Research	7
Reducing Primary Healthcare Bypass Behaviour: A Discrete Choice Experiment Study Exploring the Preferences for Primary Eye Care Services in Rural Xinjiang	6
A New Framework for Co-Creating Telehealth for Cancer Care with the Patient Community	6
Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe	6
Stated Preferences of At-Risk Populations for the Treatment of Osteoporosis: A Systematic Review	6
Patients’ Experiences of Atopic Dermatitis and Nemolizumab Treatment: An In-Trial Interview Study Embedded in a Phase 3 Clinical Trial (ARCADIA)	6
Public Preferences and Willingness to Pay for a Multidisciplinary Colorectal and Pelvic Reconstruction Service	6
Development of an Item Bank to Assess Patient-Reported Outcomes: Signs, Symptoms, and Impacts of COVID-19	6
Patient Preferences in Diagnostic Imaging: A Scoping Review	6
Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children’s Involvement and Qualitative Methods	6
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
Current Practices and Challenges When Submitting Patient Experience Data for Regulatory Decisions by the US Food and Drug Administration: An Industry Survey	5
Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment	5

Exit Interviews Examining the Patient Experience in Clinical Trials of Tirzepatide for Treatment of Type 2 Diabetes	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
A Qualitative Exploration of Patient and Staff Experiences of the Receipt and Delivery of Specialist Weight Management Services in the UK	5
FDA Guidance on Selecting, Developing, or Modifying Fit-for-Purpose Clinical Outcome Assessments: Old Wine in a New Bottle?	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
Concerns about the Responsiveness of Generic Measures and the Search for a “Minimally” Important Change: Today’s PRO Red Herrings	5
Correction: Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study	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
The Pogo-ization of Post-Pandemic Vaccine Policy	5
Methods to Summarize Discrete-Choice Experiments in a Systematic Review: A Scoping Review	5
Patient Preferences for Multi-Cancer Early Detection (MCED) Screening Tests	5
Studying How Patient Engagement Influences Research: A Mixed Methods Study	4
Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?	4
Preferences for the Use of Artificial Intelligence for Breast Cancer Screening in Australia: A Discrete Choice Experiment	4
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
Patient Preferences for Pharmacy Services: A Systematic Review of Studies Based on Discrete Choice Experiments	4
Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research	4
Treatment Preference Research in Atopic Dermatitis: A Systematic Review of Quantitative Studies	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
Putting the Choice in Choice Tasks: Incorporating Preference Elicitation Tasks in Health Preference Research	3
Preferences for Adjuvant Immunotherapy in Adults with Resected Stage III Melanoma—A Discrete Choice Experiment	3
Understanding Patient Preferences for Medication Process Attributes: A Systematic Literature Review	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
A Review of the Use of EQ-5D for Clinical Outcome Assessment in Health Technology Assessment, Regulatory Claims, and Published Literature	3
Decision Making About Disease-Modifying Treatments for Relapsing-Remitting Multiple Sclerosis: Stated Preferences and Real-World Choices	3
A Foundation for Patient-Centered Core Impact Sets: Key Learnings from Past and Existing Approaches	3
Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in a Discrete Choice Experiment	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
Recalibration: Exploring the Impact of Elexacaftor/Tezacaftor/Ivacaftor on Self-Concept for Adults with Cystic Fibrosis	3
Increasing the Patient-Centeredness of Predictive Analytics Tools	3
Patient-Reported Outcomes in Early-Phase Oncology Clinical Trials: A Stepping Stone to a Patient-Centered Drug Development	3
Research Priorities to Increase Confidence in and Acceptance of Health Preference Research: What Questions Should be Prioritized Now?	3
Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework	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
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
Comment on: Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments	2
Qualitative In-trial Interviews: Methods, Challenges, and Best Practice	2
Societal Preferences, Values and Priorities for Genomic Testing for Atrial Fibrillation: Evidence from Two Discrete Choice Experiments	2
Stated Preferences for Systemic Treatments for Prostate Cancer: A Targeted Review of the Discrete-Choice Experiment Literature	2
Taking the Shortcut: Simplifying Heuristics in Discrete Choice Experiments	2
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
An Overview of Data Collection in Health Preference Research	2
Practical considerations towards the collection of patient reported outcome data among hematopoietic cell transplant recipients	2
Patient and Caregiver Experiences of CAR T Cell Therapy for Blood Cancer in the UK: A Qualitative Study	2
Experiences of Migraine and Erenumab Treatment in Japan: Qualitative Interviews with Clinical Trial Participants	2
Patient Preferences for Neuromyelitis Optica Spectrum Disorder (NMOSD) Treatments: Results from a Discrete Choice Experiment Study in the USA	2
Correction: Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment	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
Patient-Reported Meaningful Change in Symptoms and Impacts of Paroxysmal Nocturnal Hemoglobinuria (PNH) in Three Phase III Clinical Trials of Iptacopan	2
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	2
Women's Preferences in Early Pregnancy Loss Management: A Focus on Psychological Considerations Using the Analytic Hierarchy Process	2
Preferences of People Living with HIV for Long-Acting Antiretroviral Treatment in Germany: Evidence from a Discrete Choice Experiment	2
What Next for the Science of Patient Preference? Interoperability, Standardization, and Transferability	2
A Framework to Promote Implementation of Patient-Reported Outcomes in Institutions Caring for Vulnerable and Underserved Cancer Populations	2
Preferences for Neurodevelopmental Follow-Up Care for Children: 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
Who Prefers Death to Life in Composite Time Trade-off Interviews, and Why? A Mixed-Methods Study among Asians in Singapore	2
Formative Research in the Codesign of a Discrete Choice Experiment with Patients with Myasthenia Gravis: Selecting and Refining Attributes, Levels and Scenarios	2