The Patient: Patient-Centered Outcomes Research

2008 - 2025

Current editor(s): Christopher I. Carswell

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Springer
International Academy of Health Preference Research
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Volume 18, issue 2, 2025

Transferability of Preferences; for Better or ….? pp. 97-100

Jorien Veldwijk, Semra Ozdemir, Michael Bui, Juan Marcos Gonzalez, Catharina G. M. Groothuis-Oudshoorn, Brett Hauber and Tommi Tervonen

What Next for the Science of Patient Preference? Interoperability, Standardization, and Transferability pp. 101-108

Kevin Marsh, Juan Marcos Gonzalez Sepulveda, Conny Berlin, Bennett Levitan, Marco Boeri, Catharina G. M. Groothuis-Oudshoorn, Norah L. Crossnohere, Cecilia Jimenez-Moreno, Barry Liden, Isabelle Stoeckert, Jorien Veldwijk, Stephen Watt and Brett Hauber

Reporting of Patient and Public Involvement in Technology Appraisal and Assessment Reports: A Rapid Scoping Review pp. 109-114

Eugenie Evelynne Johnson, Cyril Onwuelazu Uteh, Emma Belilios and Fiona Pearson

Preferences of Cancer Survivors for Follow-Up Care: A Systematic Review of Discrete Choice Experiments pp. 115-129

Tongyu Zhang, Zhuobing Bai, Bingyan Zhao, Yu Chen and Chunmei Zhang

What Do People Want from an AI-Assisted Screening App for Sexually Transmitted Infection-Related Anogenital Lesions: A Discrete Choice Experiment pp. 131-143

Nyi Nyi Soe, Phyu Mon Latt, Alicia King, David Lee, Tiffany R. Phillips, Christopher K. Fairley, Lei Zhang and Jason J. Ong

Patients and Spine Surgeons’ Perspectives regarding Decision-Making and Outcomes in Lumbar Surgery: An Exploratory, Qualitative Study pp. 145-160

Ling Jie Cheng, Nan Luo, Le Ann Chen, Jing Ying Cheng, Gabriel Ka Po Liu, Wenru Wang, Hwee Weng Dennis Hey and Vivien Xi Wu

Measuring Patient Preferences to Inform Clinical Trial Design: An Example in Rheumatoid Arthritis pp. 161-171

Gillian R. Currie, Jan Storek, Karen V. MacDonald, Glen Hazlewood, Caylib Durand, John F. P. Bridges, Dianne Mosher and Deborah A. Marshall

Assessing Preferences of Patients with Chronic Spontaneous Urticaria for Injectable Treatment Profiles pp. 173-185

Ana Maria Giménez-Arnau, Maria-Magdalena Balp, Andrii Danyliv, Tonya Winders, James O’Donoghue, Jörn Kleebach, Samantha Morrison, Shaun Walsh, Maike Mueller, Daniela Lopez-Ortiz, Marcus Maurer and Jonathan A. Bernstein

Volume 18, issue 1, 2025

Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework pp. 3-18

Beyza Klein, Eleanor M. Perfetto, Elisabeth M. Oehrlein, Fay Weston, Trudie C. A. Lobban and Marc Boutin

Discrete Choice Experiments to Elicit Patient Preferences for the Treatment of Major Depressive Disorder: A Systematic Review pp. 19-33

Susan dosReis, Dafne Espinal Pena, Alexandra Fincannon, Emily F. Gorman and Alejandro Amill-Rosario

Validity and Responsiveness of EQ-5D in Asthma: A Systematic Review and Meta-analysis pp. 35-47

Ai-Ping Chua, Ling Jie Cheng, Zhi Yi Soh, Le Ann Chen and Nan Luo

Preferences for the Societal Impacts of a Pandemic when it Transitions into an Endemic: A Discrete Choice Experiment pp. 49-63

Niek Mouter, Tom Geijsen, Aylin Munyasya, Jose Ignacio Hernandez, Daniel Korthals, Marijn Stok, Ellen Uiters and Marijn Bruin

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 pp. 65-76

Attie Tuinenburg, Domino Determann, Elise H. Quik, Esmee M. Willik, Geeske Hofstra, Joannes M. Hallegraeff, Ingrid Vriend, Lisanne Warmerdam, Hester E. Bommel, Gudule Boland and Martijn A. H. Oude Voshaar

Patient Preferences for First-Line Treatment of Locally Advanced or Metastatic Urothelial Carcinoma: An Application of Multidimensional Thresholding pp. 77-87

Andrea B. Apolo, Christine Michaels-Igbokwe, Nicholas I. Simon, David J. Benjamin, Mallory Farrar, Zsolt Hepp, Lisa Mucha, Sebastian Heidenreich, Katelyn Cutts, Nicolas Krucien, Natasha Ramachandran and John L. Gore

A Framework to Promote Implementation of Patient-Reported Outcomes in Institutions Caring for Vulnerable and Underserved Cancer Populations pp. 89-95

Anne L. R. Schuster, Norah L. Crossnohere, Eric Adjei Boakye, Rebekah Angove, Billie Baldwin, Esteban A. Barreto, Ronald C. Chen, Theresa W. Gillespie, Betty Hamilton, Nadine Jackson McCleary, Maimah Karmo, Tara Kaufmann, William Lee, Vikas Mehta, Larissa Meyer, Kriti Mittal, Leah Owens, Rachel Peterson, Andrea Pusic, Anne Marie Rainey, Angelique Richardson, Lauren Shapiro, Bethany Sibbitt, Cardinale Smith, Mary Vargo, Andrew Vickers, Michael Brundage and Claire Snyder

Volume 17, issue 6, 2024

The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development pp. 603-617

Carolina Navas, Alexandra Palmer Minton and Ana Maria Rodriguez-Leboeuf

Stated Preferences of At-Risk Populations for the Treatment of Osteoporosis: A Systematic Review pp. 619-634

Eva-Lotta Hinzpeter, Lakshmi Nagendra, Nadja Kairies-Schwarz, Charlotte Beaudart and Mickaël Hiligsmann

The Performance of Kaizen Tasks Across Three Online Discrete Choice Experiment Surveys: An Evidence Synthesis pp. 635-644

Benjamin Matthew Craig, Maksat Jumamyradov and Oliver Rivero-Arias

Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment pp. 645-662

Pakhi Sharma, Sanjeewa Kularatna, Bridget Abell, Steven M. McPhail and Sameera Senanayake

Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment pp. 663-672

Luis E. Loría-Rebolledo, Hugo C. Woerden, Helen Bryers, Seda Erdem and Verity Watson

Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective pp. 673-683

Lidia Engel, Cate Bailey, Ekaterina Bogatyreva, Frances Batchelor, Nancy Devlin, Briony Dow, Andrew S. Gilbert, Brendan Mulhern, Rosalie Viney and Tessa Peasgood

Patients’ Preferences for Sphingosine-1-Phosphate Receptor Modulators in Multiple Sclerosis Based on Clinical Management Considerations: A Choice Experiment pp. 685-696

Alexander Keenan, Chiara Whichello, Hoa H. Le, David M. Kern, Gabriela S. Fernandez, Vicky Turner, Anup Das, Matthew Quaife and Amy Perrin Ross

Young People’s Barriers and Facilitators of Engagement with Web-Based Mental Health Interventions for Anxiety and Depression: A Qualitative Study pp. 697-710

Thi Quynh Anh Ho, Lidia Engel, Glenn Melvin, Long Khanh-Dao Le, Ha N. D. Le and Cathrine Mihalopoulos

15th Meeting of the International Academy of Health Preference Research pp. 711-728

Deborah Marshall

Volume 17, issue 5, 2024

Making Use of Technology to Improve Stated Preference Studies pp. 483-491

Caroline Vass, Marco Boeri, Gemma Shields and Jaein Seo

Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review pp. 493-518

Avishek Pal, Isabelle Arnet, Bernice Simone Elger and Tenzin Wangmo

Treatment Preference Research in Atopic Dermatitis: A Systematic Review of Quantitative Studies pp. 519-535

Katja C. Heinz, Charlotte Beaudart, Damon Willems and Mickaël Hiligsmann

Consumer Preferences for a Healthcare Appointment Reminder in Australia: A Discrete Choice Experiment pp. 537-550

Shayma Mohammed Selim, Sameera Senanayake, Steven M. McPhail, Hannah E. Carter, Sundresan Naicker and Sanjeewa Kularatna

Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma pp. 551-563

Adam E. J. Gibson, Waqas Ahmed, Louise Longworth, Bryan Bennett, Melinda Daumont and Liz Darlison

Evaluating the Preferences and Willingness-to-Pay for Oral Antidiabetic Drugs Among Patients with Type 2 Diabetes Mellitus in China: A Discrete Choice Experiment pp. 565-574

Ling-Hsiang Chuang, Huanlan Zhang, Tianqi Hong and Shitong Xie

Optimizing Communication on HPV Vaccination to Parents of 11- to 14-Year-Old Adolescents in France: A Discrete Choice Experiment pp. 575-588

Sandra Chyderiotis, Jonathan Sicsic, Amandine Gagneux-Brunon, Jocelyn Raude, Anne-Sophie Barret, Sébastien Bruel, Aurélie Gauchet, Anne-Sophie Duc Banaszuk, Morgane Michel, Bruno Giraudeau, Nathalie Thilly and Judith E. Mueller

Eliciting Older Cancer Patients’ Preferences for Follow-Up Care to Inform a Primary Healthcare Follow-Up Model in China: A Discrete Choice Experiment pp. 589-601

Jiawei Geng, Ran Li, Xinyu Wang, Rongfang Xu, Jibin Liu, Haiyan Jiang, Gaoren Wang and Therese Hesketh

Volume 17, issue 4, 2024

Adverse Event Reporting in Cancer Clinical Trials: Incorporating Patient-Reported Methods. A Systematic Scoping Review pp. 335-347

Minna Grahvendy, Bena Brown and Laurelie R. Wishart

Differences in Preferences for Drug Therapy Between Patients with Metastatic Versus Early-Stage Breast Cancer: A Systematic Literature Review pp. 349-362

Lilly Sophia Brandstetter, Steffi Jírů-Hillmann, Stefan Störk, Peter Ulrich Heuschmann, Achim Wöckel and Jens-Peter Reese

What Breast Cancer Screening Program do Rural Women Prefer? A Discrete Choice Experiment in Jiangsu, China pp. 363-378

Yanjun Sun, Yiping Wang, Huiying Zhang, Zhiqing Hu, Yuhao Ma and Yuan He

Studying How Patient Engagement Influences Research: A Mixed Methods Study pp. 379-395

Deborah A. Marshall, Nitya Suryaprakash, Danielle C. Lavallee, Tamara L. McCarron, Sandra Zelinsky, Karis L. Barker, Gail MacKean, Maria J. Santana, Paul Moayyedi and Stirling Bryan

A Novel Approach to Computing Preference Estimates for Different Treatment Pathways: An Application in Oncology pp. 397-406

Kathleen Beusterien, Oliver Will, Emuella Flood, Susan McCutcheon, deMauri S. Mackie and Stella Mokiou

Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context? pp. 407-419

Patricia Kenny, Deborah J. Street, Jane Hall, Meera R. Agar and Jane Phillips

Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment pp. 421-439

Jennifer Drahos, Adriana Boateng-Kuffour, Melanie Calvert, Laurice Levine, Neelam Dongha, Nanxin Li, Zahra Pakbaz, Farrukh Shah and Antony P. Martin

Diabetes Research Matters: A Three-Round Priority-Setting Survey Consultation with Adults Living with Diabetes and Family Members in Australia pp. 441-455

Christel Hendrieckx, Sienna Russell-Green, Timothy Skinner, Ashley H. Ng, Chris Lee, Siobhan Barlow, Alan Davey, Caitlin Rogers, Elizabeth Holmes-Truscott and Jane Speight

Perceptions and Acceptance of a Prophylactic Vaccine for Human Immunodeficiency Virus (HIV): A Qualitative Study pp. 457-469

Natalie V. J. Aldhouse, Eric K. H. Chan, Tamara Al-zubeidi, Stephanie McKee, Valérie Oriol Mathieu, Antoine C. El Khoury and Helen Kitchen

Exploring Consumers’ Motivations and Experiences of Engaging as Partners in Cancer Research pp. 471-479

Jamie L. Waterland, Cassandra Beer, Rowan Forbes Shepherd and Laura E. Forrest

Correction: Exploring Consumers’ Motivations and Experiences of Engaging as Partners in Cancer Research pp. 481-481

Jamie L. Waterland, Cassandra Beer, Rowan Forbes Shepherd and Laura E. Forrest

Volume 17, issue 3, 2024

The Limitations of EQ-5D as a Clinical Outcome Assessment Tool pp. 215-217

Ari Gnanasakthy and Carla Romano DeMuro

Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People pp. 219-227

Samantha Husbands, Paul Mark Mitchell and Joanna Coast

Using Patient Preferences in Health Technology Assessment: Evaluating Quality-Adjusted Survival Equivalents (QASE) for the Quantification of Non-health Benefits pp. 229-237

Kevin Marsh, Hannah Collacott, Jim Thomson, Jonathan Mauer, Stephen Watt, Koonal Shah, Brett Hauber, Louis Garrison and Mendwas Dzingina

A Review of the Use of EQ-5D for Clinical Outcome Assessment in Health Technology Assessment, Regulatory Claims, and Published Literature pp. 239-249

Caroline Shaw, Louise Longworth, Bryan Bennett, Louise McEntee-Richardson and James W. Shaw

Correction to: A Review of the Use of EQ-5D for Clinical Outcome Assessment in Health Technology Assessment, Regulatory Claims, and Published Literature pp. 251-251

Caroline Shaw, Louise Longworth, Bryan Bennett, Louise McEntee-Richardson and James W. Shaw

Quality of Life in Adults with Chronic Cough: A Mixed Methods Study Informing the Development of a Quantitative Patient Preference Study pp. 253-262

Theresa Coles, Molly McFatrich, Helen Ding, Nicole Lucas, Erin Daniell, Aparna Swaminathan, Jonathan Schelfhout and Reed Johnson

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox pp. 263-274

Elisabeth M. Oehrlein, Silke Schoch, Kelsie Majercak, Laura Elisabeth Gressler, Ryan C. Costantino, T. Rosie Love and Eleanor M. Perfetto

Attitudes Toward the Adoption of Remote Patient Monitoring and Artificial Intelligence in Parkinson’s Disease Management: Perspectives of Patients and Neurologists pp. 275-285

Carlos Antonio Godoy Junior, Francesco Miele, Laura Mäkitie, Eleonora Fiorenzato, Maija Koivu, Lytske Jantien Bakker, Carin Uyl- de Groot, William Ken Redekop and Welmoed Kirsten Deen

Patients’ Preferences for Systemic Lupus Erythematosus Treatments—A Discrete Choice Experiment pp. 287-300

Hannah Collacott, Andrea Phillips-Beyer, Nicolas Krucien, Bruno Flamion and Kevin Marsh

Exploring the Factors that Drive Clinical Negligence Claims: Stated Preferences of Those Who Have Experienced Unintended Harm pp. 301-317

Nyantara Wickramasekera, Arne Hole, Donna Rowen, Allan Wailoo and Anju D. Keetharuth

From Qualitative Research to Quantitative Preference Elicitation: An Example in Invasive Meningococcal Disease pp. 319-333

Joshua Coulter, Chiara Whichello, Sebastian Heidenreich, Brett Hauber, Christine Michaels-Igbokwe, Joseph C. Cappelleri, Paula Peyrani, Jessica Vespa Presa, Malavika Venkatraman and Katharina Schley

Volume 17, issue 2, 2024

Pretesting Discrete-Choice Experiments: A Guide for Researchers pp. 109-120

Nicola B. Campoamor, Christi J. Guerrini, Whitney Bash Brooks, John F. P. Bridges and Norah L. Crossnohere

A Best–Worst Scaling Study of the General Population's Preferences for Activities in Living Arrangements for Persons With Dementia pp. 121-131

Christian Speckemeier, Carina Abels, Klemens Höfer, Anke Walendzik, Jürgen Wasem and Silke Neusser

Exploring the Preferences of Parents of Children with Myopia in Rural China for Eye Care Services Under Privatization Policy: Evidence from a Discrete Choice Experiment pp. 133-145

Wen Lin, Xiaodong Dong, Jack Hennessy, Junling Zhao and Xiaochen Ma

Current Practices and Challenges When Submitting Patient Experience Data for Regulatory Decisions by the US Food and Drug Administration: An Industry Survey pp. 147-159

Cathy Anne Pinto, Tommi Tervonen, Cecilia Jimenez-Moreno, Bennett Levitan, Montse Soriano Gabarró, Cynthia Girman, Josephine M. Norquist and Brett Hauber

Preferences of Patients with Amyotrophic Lateral Sclerosis for Intrathecal Drug Delivery: Choosing between an Implanted Drug-Delivery Device and Therapeutic Lumbar Puncture pp. 161-177

Jaein Seo, Sandeep Saurkar, Gabriela S. Fernandez, Anup Das, Stephen A. Goutman and Sebastian Heidenreich

Research Priorities to Increase Confidence in and Acceptance of Health Preference Research: What Questions Should be Prioritized Now? pp. 179-190

Rachael L. DiSantostefano, Ian P. Smith, Marie Falahee, Aura Cecilia Jiménez-Moreno, Serena Oliveri, Jorien Veldwijk, G. Ardine Wit, Ellen M. Janssen, Conny Berlin and Catharina G. M. Groothuis-Oudshoorn

Prosocial Behaviour and Antibiotic Resistance: Evidence from a Discrete Choice Experiment pp. 191-202

Mirko Ancillotti, Samare P. I. Huls, Eva M. Krockow and Jorien Veldwijk

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 pp. 203-213

James Fotheringham, Julian Guest, Joerg Latus, Edgar Lerma, Isabelle Morin, Thilo Schaufler, Marco Soro, Sonja Ständer and Steven Zeig

Volume 17, issue 1, 2024

Role Preferences in Medical Decision Making: Relevance and Implications for Health Preference Research pp. 3-12

Janine A. Til, Alison Pearce, Semra Ozdemir, Ilene L. Hollin, Holly L. Peay, Albert W. Wu, Jan Ostermann, Ken Deal and Benjamin M. Craig

Patient Preferences for Pharmacy Services: A Systematic Review of Studies Based on Discrete Choice Experiments pp. 13-24

Margaux Riboulet, Anne-Laure Clairet, Mohamed Bennani and Virginie Nerich

Determining Commonalities in the Experiences of Patients with Rare Diseases: A Qualitative Analysis of US Food and Drug Administration Patient Engagement Sessions pp. 25-37

Catherine Mease, Lewis J. Fermaglich, Karen Jackler, Shawn Shermer and Kathleen L. Miller

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 pp. 39-52

Nikki McCaffrey, Julie Ratcliffe, David Currow, Lidia Engel and Claire Hutchinson

Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study pp. 53-64

Julie Ratcliffe, Kiri Lay, Matthew Crocker, Lidia Engel, Rachel Milte, Claire Hutchinson, Jyoti Khadka, David G. T. Whitehurst, Brendan Mulhern, Rosalie Viney and Richard Norman

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 pp. 65-82

Janine Verstraete, Christopher Booth, Jane Booth, Shazia Peer, Jessica McGuire, Fiona Kritzinger, Taryn Gray, Noluthando Zibi, Primrose Shabangu and Marco Zampoli

Preferences for Monitoring Comprehensive Heart Failure Care: A Latent Class Analysis pp. 83-95

Axel C. Mühlbacher, Andrew Sadler and Christin Juhnke

Preferences and Willingness to Pay for Medication in Patients with Renal Cell Carcinoma in China: A Discrete-Choice Experiment pp. 97-108

Ruilin Ding, Rong Shao, Lingli Zhang and Jianzhou Yan