The Patient: Patient-Centered Outcomes Research

2008 - 2025

Current editor(s): Christopher I. Carswell

From:
Springer
International Academy of Health Preference Research
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Volume 18, issue 6, 2025

Developing Tools for the Efficient Design of Health Preference Studies: Taxonomy of Attributes and Prototype of an Attribute Library pp. 585-596

Norah L. Crossnohere, Jonah Golder, Esther W. Bekker-Grob, Juan Marcos Gonzalez Sepulveda, Kert Gunasekaran, Alissa Hanna, Bennett Levitan, Barry Liden, Deborah Marshall, Christine Poulos, Shelby D. Reed and Ellen M. Janssen

Prioritizing Participant and Research Team Emotional Safety During Data Generation and Analysis in Qualitative Patient-Reported Outcome Measure Research: Development of a Framework Informed by the GENDER-Q Youth Study pp. 597-608

Shelby L. Kennedy, Susan M. Jack, Natasha Johnson, Jennifer Couturier, Charlene Rae and Anne F. Klassen

Cognitive Interviews: Recommendations for Best Practices in Clinical Outcome Assessment (COA) Measure Development and Validation pp. 609-621

Keith A. Meadows, Nur Ferrante and Tomislav Geršić

Measuring Fatigue in Multiple Sclerosis: A Rapid Review pp. 623-644

Tergel Namsrai, Anne Parkinson, Richard Burns, Geoffrey Herkes, Mark Elisha, Katrina Chisholm, Janet Drew, Vanessa Fanning, Anne Brüstle, Hanna Suominen, Nicolas Cherbuin and Jane Desborough

Preferences for Telephone Cancer Information and Support in People with Cancer and Carers: Attribute and Level Selection for a Discrete Choice Experiment pp. 645-660

Ann Livingstone, Lidia Engel, Victoria White, Daswin Silva, Jessica Bucholc, April Murphy, Elaine Cook, Cathrine Mihalopoulos, Liliana Orellana, Julie Ratcliffe, Danielle Spence and Nikki McCaffrey

Content Validity of the EQ-HWB in Caregivers of Children with Health Conditions pp. 661-671

Cate Bailey and Tessa Peasgood

Considering Clinical Implementation of Polygenic Scores in Hereditary Cancer Risk Assessment: Recipients’ Perspectives on Influencing Factors and Strategies pp. 673-686

Rebecca Purvis, Natalie Taylor, Paul James, Mary-Anne Young and Laura E. Forrest

Exit Interviews Examining Changes to Mood and Work/Productivity Impacts Related to Vasomotor Symptoms: Perspectives of Postmenopausal Women Receiving Elinzanetant in Phase III Clinical Trials pp. 687-697

Claudia Haberland, Melissa Barclay, Asha Lehane, Sophie Whyman, Adam Gater, Heidi Wikstrom, Christian Seitz, Nils Schoof, Andrew Trigg and Helena Bradley

Patient-Reported Meaningful Change in Symptoms and Impacts of Paroxysmal Nocturnal Hemoglobinuria (PNH) in Three Phase III Clinical Trials of Iptacopan pp. 699-712

Carlos DeCastro, Phillip Sheinberg, Bing Han, Susan Vallow, Georgina Bermann, Marion Dhalke, Rakesh Kumar, Gavin Dickie, Nina Galipeau, Roger Lamoureux, Kaelyn Rupinski, Caitlyn Lowe, Amber Nieves, Flore Sicre Fontbrune and Regis Peffault Latour

Exit Interviews to Understand Meaningful Change from the Patient Perspective in a Clinical Study of Dupilumab for the Treatment of Chronic Inducible Cold Urticaria pp. 713-728

Ella Brookes, Ufuk Coşkun, Christina O’Donnell, Efstathios Zikos, Renata Martincova, Jingdong Chao, Mohana Giruparajah and Beverly Romero

Patient and Caregiver Experiences of CAR T Cell Therapy for Blood Cancer in the UK: A Qualitative Study pp. 729-745

Christel McMullan, Melanie J. Calvert, Sarah E. Hughes, Lester Pyatt, Bernie Kern, Karen L. Shaw, Biruk Asfaw, Caroline Besley, Niamh Buckingham, Hayley Ellis, Caitlin Farrow, Maria Mazza, Rachel Miller, David Irvine, Ceri Jones, Emily John, Yasmin Sheikh, Gemma Pugh, Christina Yiallouridou and Olalekan Lee Aiyegbusi

Patient Preferences for Metastatic Colorectal Cancer Treatment: A Multi-method Approach Using Discrete Choice Experiments and Best–Worst Scaling pp. 747-761

Carina Oedingen, Karen V. MacDonald, Barry D. Stein, Gerald Batist, Winson Y. Cheung, Sharlene Gill, Benjamin A. Goldenberg, Yoo-Joung Ko and Deborah A. Marshall

Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study pp. 763-772

Alice Vanneste, Peter Sinnaeve, Isabelle Huys, Tom Adriaenssens and Christophe Garweg

Correction: Patients’ Needs and Preferences for Cardiac Pacemaker Implantation: A Qualitative Study on Disease and Medical Device Characteristics to Inform a Quantitative Preference Study pp. 773-774

Alice Vanneste, Peter Sinnaeve, Isabelle Huys, Tom Adriaenssens and Christophe Garweg

Volume 18, issue 5, 2025

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications pp. 403-414

Trishna Bharadia, Jan Geissler, Rosie Robson, Lucie Laštíková, Laura D. Porter, Grace Richmond, Ben Johnson, Louise Roch and Dikran Toroser

Putting the Choice in Choice Tasks: Incorporating Preference Elicitation Tasks in Health Preference Research pp. 415-423

Jennifer A. Whitty, Emily Lancsar, Richard Abreu Lourenco, Kirsten Howard and Elly A. Stolk

What Can Discrete-Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data pp. 425-440

F. Reed Johnson, Wiktor Adamowicz and Catharina Groothuis-Oudshoorn

Correction: What Can Discrete‑Choice Experiments Tell Us about Patient Preferences? An Introduction to Quantitative Analysis of Choice Data pp. 441-442

F. Reed Johnson, Wiktor Adamowicz and Catharina Groothuis-Oudshoorn

Engaging Underserved Populations in Health Preference Research: Challenges and Strategies pp. 443-459

Paula Sinead Donnelly, Divya Mohan, Hannah Penton, Emily Wilson and Marco Boeri

A Systematic Review of Discrete Choice Experiments on Preferences for COVID-19 Vaccinations pp. 461-480

Eva-Lotta Hinzpeter, Nadja Kairies-Schwarz, Charlotte Beaudart, Jonathan Douxfils, Dweeti Nayak and Mickaël Hiligsmann

Incorporating Best-Worst Scaling (BWS) Questions into Focus Groups to Improve Understanding of Patient Preferences and Refine BWS Attributes pp. 481-493

Deborah A. Marshall, Karen V. MacDonald, Nitya Suryaprakash, Raza M. Mirza, Maida J. Sewitch and Geoffrey C. Nguyen

Preferences for the Use of Artificial Intelligence for Breast Cancer Screening in Australia: A Discrete Choice Experiment pp. 495-510

Maame Woode, Udeni De Silva Perera, Chris Degeling, Yves Saint James Aquino, Nehmat Houssami, Stacy M. Carter and Gang Chen

Patients’ Experiences of Atopic Dermatitis and Nemolizumab Treatment: An In-Trial Interview Study Embedded in a Phase 3 Clinical Trial (ARCADIA) pp. 511-521

Jonathan I. Silverberg, Dina Filipenko, Carla Dias Barbosa, Danielle Rodriguez, Olivier Chambenoit, Katrin Jack, Christophe Piketty, Ram Subramanian and Jorge Puelles

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 pp. 523-537

Jill Carlton, Philip A. Powell, Andrew Kirkcaldy and Donna Rowen

What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents pp. 539-561

Debbie Braybrook, Lucy Coombes, Hannah M. Scott, Daney Harðardóttir, Anna Roach, Jemimah Bariuan, Clare Ellis-Smith, Julia Downing, Fliss E. M. Murtagh, Myra Bluebond-Langner, Lorna K. Fraser, Richard Harding and Katherine Bristowe

Volume 18, issue 4, 2025

How to Present a Decision Object in Health Preference Research: Attributes and Levels, the Decision Model, and the Descriptive Framework pp. 291-302

Axel C. Mühlbacher, Esther W. Bekker-Grob, Oliver Rivero-Arias, Bennett Levitan and Caroline Vass

An Overview of Data Collection in Health Preference Research pp. 303-315

Semra Ozdemir, Matthew Quaife, Ateesha F. Mohamed and Richard Norman

Exploring How Values of Colorectal Cancer Patients and their Caregivers Influence Treatment Decision-Making pp. 317-327

Raza M. Mirza, Sabrin Salim, Jennifer A. H. Bell, Mary Jane Esplen, Karen V. MacDonald, Barry D. Stein and Deborah A. Marshall

How do Design Characteristics Affect Respondent Engagement? Assessing Attribute Non-attendance in Discrete Choice Experiments Valuing the EQ-5D-5L pp. 329-341

Peiwen Jiang, Deborah Street, Richard Norman, Rosalie Viney, Mark Oppe and Brendan Mulhern

Elderly People’s Preferences for Different Organizational Models for Frailty Screening: A Discrete Choice Experiment pp. 343-355

Lucile Mulot, Fanny Monmousseau, Sophie Dubnitskiy-Robin, Maurine Diot, Pierre Marionnaud, Solène Brunet-Houdard and Bertrand Fougere

Discrete Choice Experiment Versus Best–Worst Scaling: An Empirical Comparison in Eliciting Young People’s Preferences for Web-Based Mental Health Interventions pp. 357-372

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

Identifying and Managing Fraudulent Respondents in Online Stated Preferences Surveys: A Case Example from Best–Worst Scaling in Health Preferences Research pp. 373-390

Karen V. MacDonald, Geoffrey C. Nguyen, Maida J. Sewitch and Deborah A. Marshall

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 pp. 391-402

Lawrence Mwenge, Matthew Quaife, Lucheka Sigande, Sian Floyd, Melvin Simuyaba, Mwelwa Phiri, Chisanga Mwansa, Mutale Kabumbu, Musonda Simwinga, Kwame Shanaube, Ab Schaap, Sarah Fidler, Richard Hayes, Helen Ayles, Bernadette Hensen and Peter Hangoma

Volume 18, issue 3, 2025

Stated-Preference Survey Design and Testing in Health Applications pp. 187-197

Deborah A. Marshall, Jorien Veldwijk, Ellen M. Janssen and Shelby D. Reed

Qualitative In-trial Interviews: Methods, Challenges, and Best Practice pp. 199-209

Nicola Williamson, Chloe Howse, Nicola Hodson, Julia Stein and Rob Arbuckle

Routine Quality-of-Life Measurement in Residential Aged Care: Staff, Resident, and Family Perspectives pp. 211-223

Andrew Simon Gilbert, Frances Batchelor, Nancy Devlin, Briony Dow, Brendan Mulhern, Rosalie Viney, Tessa Peasgood and Lidia Engel

Patient Experience of Treatment with Tirzepatide for Weight Management: Exit Interviews from SURMOUNT-4 pp. 225-236

Chloe Carmichael, Irina Jouravskaya, Elizabeth Collins, Danielle Burns, Jiat Ling Poon, Helen Kitchen, Donna Mojdami, Madhumita Murphy, Nadia Ahmad and Chisom Kanu

Using Best–Worst Scaling Survey to Investigate the Relative Importance of Attributes Associated with Public Hospital Outpatient Appointments pp. 237-247

Tilley Pain, Amy Brown, Gail Kingston, Stephen Perks, Corey Patterson, Nerida Firth, Jessica Lester, Luke Sherwood, Sonja Brennan and Deborah Street

Content Validity Assessment of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) Among Adults with Insomnia and Nocturia pp. 249-261

Miriam Kimel, Leah Kleinman, Tobias Di Marco, Antonio Olivieri, Andrea Schulz, Katherine Kirk and Andrea Phillips Beyer

Unveiling Preferences in Closed Communities: Development of a Discrete Choice Experiment (DCE) Questionnaire to Elicit Ultra-Orthodox Women Preferences for Video Consultations in Primary Care pp. 263-277

Irit Chudner, Anat Drach-Zahavy, Batya Madjar, Leah Gelman and Sonia Habib

Getting Everyone on Board to Break the Cycle of Bacterial Vaginosis (BV) Recurrence: A Qualitative Study of Partner Treatment for BV pp. 279-290

Alicia J. King, Tiffany R. Phillips, Erica L. Plummer, Natasha Wild, Christopher K. Fairley, Eric P. F. Chow, Lenka A. Vodstrcil and Catriona S. Bradshaw

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