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 15, issue 6, 2022

Regulating Between the Notes: The US FDA and the Evolution of the Patient Voice Through Twenty-First Century Regulatory Science pp. 611-613

Peter J. Pitts

Increasing the Patient-Centeredness of Predictive Analytics Tools pp. 615-617

Norah L. Crossnohere, Janet E. Childerhose and Seuli Bose-Brill

Patient-Centered Core Impact Sets: What They are and Why We Need Them pp. 619-627

Eleanor M. Perfetto, Elisabeth M. Oehrlein, T. Rosie Love, Silke Schoch, Annie Kennedy and Jennifer Bright

Methods to Summarize Discrete-Choice Experiments in a Systematic Review: A Scoping Review pp. 629-639

Daksh Choudhary, Megan Thomas, Kevin Pacheco-Barrios, Yuan Zhang, Pablo Alonso-Coello, Holger Schünemann and Glen Hazlewood

The Impact of Patient Support Programs in Europe: A Systematic Literature Review pp. 641-654

José Antonio Sacristán, Esther Artime, Silvia Díaz-Cerezo, Marta Comellas, Lucía Pérez-Carbonell and Luis Lizán

Concerns about the Responsiveness of Generic Measures and the Search for a “Minimally” Important Change: Today’s PRO Red Herrings pp. 655-656

David Cella

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 pp. 657-668

Ana-Maria Orbai, Laura C. Coates, Atul Deodhar, Philip S. Helliwell, Christopher T. Ritchlin, Evan Leibowitz, Alexa P. Kollmeier, Elizabeth C. Hsia, Xie L. Xu, Shihong Sheng, Yusang Jiang, Yan Liu and Chenglong Han

What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals pp. 669-678

Philip A. Powell and Donna Rowen

Patient Medication Preferences for Managing Dry Eye Disease: The Importance of Medication Side Effects pp. 679-690

Semra Ozdemir, Sharon Wan Jie Yeo, Jia Jia Lee, Adithya Bhaskar, Eric Finkelstein and Louis Tong

Interpreting Within-Patient Changes on the EORTC QLQ-C30 and EORTC QLQ-LC13 pp. 691-702

Cheryl D. Coon, Michael Schlichting and Xinke Zhang

Development of an Item Bank to Assess Patient-Reported Outcomes: Signs, Symptoms, and Impacts of COVID-19 pp. 703-713

Matthew Reaney, James Turnbull, Jean Paty, Karli Heuer and Chad Gwaltney

Opportunities to Improve Long COVID Care: Implications from Semi-structured Interviews with Black Patients pp. 715-728

Rachel S. Bergmans, Keiyana Chambers-Peeple, Deena Aboul-Hassan, Samantha Dell’Imperio, Allie Martin, Riley Wegryn-Jones, Lillian Z. Xiao, Christine Yu, David A. Williams, Daniel J. Clauw and Melissa DeJonckheere

Volume 15, issue 5, 2022

Towards Accurate Prediction of Healthcare Choices: The INTERSOCIAL Project pp. 509-512

Esther W. Bekker-Grob, Bas Donkers, Michiel Bliemer, Joanna Coast and Joffre Swait

Improvements to Survey Design from Pilot Testing a Discrete-Choice Experiment of the Preferences of Persons Living with HIV for Long-Acting Antiretroviral Therapies pp. 513-520

Douglas Barthold, Aaron T. Brah, Susan M. Graham, Jane M. Simoni and Brett Hauber

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 pp. 521-535

Anabel Estévez-Carrillo, Sarah Dewilde, Mark Oppe and Juan M. Ramos-Goñi

Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment pp. 537-550

Bryanne L. Kennedy, Gillian R. Currie, Ania Kania-Richmond, Carolyn A. Emery, Gail MacKean and Deborah A. Marshall

The Patient Voice: Exploring Treatment Preferences in Participants with Mild Cognitive Concerns to Inform Regulatory Decision Making pp. 551-564

Carol Mansfield, Kristin Bullok, Jillian Venci Fuhs, Antje Tockhorn-Heidenreich, J. Scott Andrews, Dana DiBenedetti, Brandy R. Matthews, Joshua C. Darling, Jessie Sutphin and Brett Hauber

Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID pp. 565-576

Sarah Ziegler, Alessia Raineri, Vasileios Nittas, Natalie Rangelov, Fabian Vollrath, Chantal Britt and Milo A. Puhan

A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy pp. 577-588

Norah L. Crossnohere, Ryan Fischer, Elizabeth Vroom, Patricia Furlong and John F. P. Bridges

Determinants of Health Preferences Using Data from the Egyptian EQ-5D-5L Valuation Study pp. 589-598

Sahar Al Shabasy, Fatima Al Sayah, Maggie Abbassi and Samar Farid

Perspectives of Pediatric Rheumatologists on Initiating and Tapering Biologics in Patients with Juvenile Idiopathic Arthritis: A Formative Qualitative Study pp. 599-609

Gillian R. Currie, Tram Pham, Marinka Twilt, Maarten J. IJzerman, Pauline M. Hull, Michelle M. A. Kip, Susanne M. Benseler, Glen S. Hazlewood, Rae S. M. Yeung, Nico M. Wulffraat, Joost F. Swart, Sebastian J. Vastert and Deborah A. Marshall

Volume 15, issue 4, 2022

Patient-Reported Chronic Pain Intensity: More Than Meets the Eye pp. 383-387

Dale J. Langford, Jennifer S. Gewandter, Dagmar Amtmann, Bryce B. Reeve, Sharon Hertz, John D. Loeser, Christin Veasley, Dennis C. Turk and Robert H. Dworkin

Time to See the Difference: Video Capture for Patient-Centered Clinical Trials pp. 389-397

Elin Haf Davies, Clare Matthews, Adeline Merlet and Martine Zimmermann

What is the Most Valid and Reliable Compassion Measure in Healthcare? An Updated Comprehensive and Critical Review pp. 399-421

Shane Sinclair, Jane Kondejewski, Thomas F. Hack, Harrison C. D. Boss and Cara C. MacInnis

The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review pp. 423-434

Megan Thomas, Deborah A. Marshall, Daksh Choudhary, Susan J. Bartlett, Adalberto Loyola Sanchez and Glen S. Hazlewood

Patient-Reported Outcome Measures Used for Assessing Breast Sensation after Mastectomy: Not Fit for Purpose pp. 435-444

Hansje P. Smeele, Rachel C. H. Dijkstra, Merel L. Kimman, René R. W. J. Hulst and Stefania M. H. Tuinder

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 pp. 445-457

Sabina Sanghera, Axel Walther, Tim J. Peters and Joanna Coast

How Do People with Experience of Infertility Value Different Aspects of Assistive Reproductive Therapy? Results from a Multi-Country Discrete Choice Experiment pp. 459-472

Chris Skedgel, Eleanor Ralphs, Elaine Finn, Marie Markert, Carl Samuelsen and Jennifer A. Whitty

Will the Public Engage with New Pharmacy Roles? Assessing Future Uptake of a Community Pharmacy Health Check Using a Discrete Choice Experiment pp. 473-483

Gin Nie Chua, Christine Bond, Terry Porteous and Mandy Ryan

Patient and Public Preferences for Coordinated Care in Switzerland: Development of a Discrete Choice Experiment pp. 485-496

Anna Nicolet, Clémence Perraudin, Joël Wagner, Ingrid Gilles, Nicolas Krucien, Isabelle Peytremann-Bridevaux and Joachim Marti

Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment pp. 497-507

Colene Bentley, Sara Izadi-Najafabadi, Adam Raymakers and Helen McTaggart-Cowan

Volume 15, issue 3, 2022

Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review pp. 269-285

Rebekah Hall, Antonieta Medina-Lara, Willie Hamilton and Anne E. Spencer

Stated Preference Research in Reproductive and Maternal Healthcare Services in Sub-Saharan Africa: A Systematic Review pp. 287-306

Daniel Erku, Paul Scuffham, Katrina Gething, Richard Norman, Alemayehu B. Mekonnen, Gebremedhin B. Gebretekle, Yibeltal Assefa and Gizachew A. Tessema

The Importance of Disease-Free Survival as a Clinical Trial Endpoint: A Qualitative Study Among Canadian Survivors of Lung Cancer pp. 307-316

Andrea Bever, Jackie Manthorne, Tissa Rahim, Layla Moumin and Shelagh M. Szabo

Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development pp. 317-328

Hadley Stevens Smith, Stephanie R. Morain, Jill Oliver Robinson, Isabel Canfield, Janet Malek, Caryn Kseniya Rubanovich, Cinnamon S. Bloss, Sara L. Ackerman, Barbara Biesecker, Kyle B. Brothers, Crispin N. Goytia, Carol R. Horowitz, Sara J. Knight, Barbara Koenig, Stephanie A. Kraft, Simon Outram, Christine Rini, Kelly J. Shipman, Margaret Waltz, Benjamin Wilfond and Amy L. McGuire

A Guide to Observable Differences in Stated Preference Evidence pp. 329-339

Benjamin Matthew Craig, Esther W. Bekker-Grob, Juan Marcos González Sepúlveda and William H. Greene

A Standard Set of Value-Based Patient-Centered Outcomes and Measures of Overall Health in Adults pp. 341-351

Jaheeda Gangannagaripalli, Andrea Albagli, Stacie N. Myers, Sarah Whittaker, Andria Joseph, Anna Clarke, Lucy Matkin, Jordi Alonso, Ira Byock, Michael den Berg, Carolyn Canfield, John Chaplin, Juan Dapueto, Marcelo Pio Almedia Fleck, Chris Sidey-Gibbons, Jan Hazelzet, Rachel Hess, Kaisa Immonen, Serena Joyner, Catherine Katz, Carolyn Kerrigan, Cindy Lam, Joanne Lunn, Fiona McKenzie, Alastair Roeves, Caleb Stowell, Timothy Switaj, Melissa Tinsley, Eyal Zimlichman and Jose M. Valderas

Women’s Willingness to Accept Risks of Medication for Inflammatory Bowel Disease During Pregnancy pp. 353-365

Tatyana Kushner, Angelyn Fairchild, F. Reed Johnson, Bruce E. Sands, Uma Mahadevan, Sreedhar Subramanian, Ashwin Ananthakrishnan, Christina Ha and Meenakshi Bewtra

Exit Interviews Examining the Patient Experience in Clinical Trials of Tirzepatide for Treatment of Type 2 Diabetes pp. 367-377

Louis S. Matza, Katie D. Stewart, Laura Fernández Landó, Hiren Patel and Kristina S. Boye

Correction to: Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review pp. 379-381

Rebekah Hall, Antonieta Medina-Lara, Willie Hamilton and Anne E. Spencer

Volume 15, issue 2, 2022

Patient Experience Data for Medical Product Development: Opportunity Beyond Obligation pp. 147-149

Robyn T. Carson

Unexpected Outcomes of Measuring Decision Regret: Using a Breast Cancer Decision-Making Case Example pp. 151-155

Kelly Oman, Marie-Anne Durand, Glyn Elwyn, Renata West Yen, Christine Marx and Mary C. Politi

Women’s Experiences of and Perspectives on Transvaginal Mesh Surgery for Stress Urine Incontinency and Pelvic Organ Prolapse: A Qualitative Systematic Review pp. 157-169

Mina Motamedi, Stacy M. Carter and Chris Degeling

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey pp. 171-185

Andrea J. Chow, Michael Pugliese, Laure A. Tessier, Pranesh Chakraborty, Ryan Iverson, Doug Coyle, Jonathan B. Kronick, Kumanan Wilson, Robin Hayeems, Walla Al-Hertani, Michal Inbar-Feigenberg, Shailly Jain-Ghai, Anne-Marie Laberge, Julian Little, John J. Mitchell, Chitra Prasad, Komudi Siriwardena, Rebecca Sparkes, Kathy N. Speechley, Sylvia Stockler, Yannis Trakadis, Jagdeep S. Walia, Brenda J. Wilson and Beth K. Potter

Preference Paths and Their Kaizen Tasks for Small Samples pp. 187-196

Benjamin Matthew Craig, Kim Rand and John D. Hartman

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 Acceptability Study pp. 197-206

Suzanne McDonald, Samuel X. Tan, Shamima Banu, Mieke Driel, James M. McGree, Geoffrey Mitchell and Jane Nikles

Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study pp. 207-218

Damon Willems, Mickael Hiligsmann, Hessel H van der Zee, Christopher J Sayed and Silvia M A A Evers

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 Discrete Choice Experiment pp. 219-232

Glory Apantaku, Magda Aguiar, K. Julia Kaal, Patrick J. McDonald, Mary B. Connolly, Viorica Hrincu, Judy Illes and Mark Harrison

Adaptation of a Shared Decision-Making Tool for Early Rheumatoid Arthritis Treatment Decisions with Indigenous Patients pp. 233-243

Valerie Umaefulam, Terri-Lynn Fox, Glen Hazlewood, Nick Bansback, Claire E. H. Barber and Cheryl Barnabe

Preferences and Experiences Regarding the Use of the Self-Sampling Device in hrHPV Screening for Cervical Cancer pp. 245-253

Marjolein Dieleman, Jolien Waard, G. Bea A. Wisman, Ed Schuuring, Martha D. Esajas, Karin M. Vermeulen and Geertruida H. Bock

Comparing Patient Preferences for Antithrombotic Treatment During the Acute and Chronic Phases of Myocardial Infarction: A Discrete-Choice Experiment pp. 255-266

Cathy Anne Pinto, Gin Nie Chua, John F. P. Bridges, Ella Brookes, Johanna Hyacinthe and Tommi Tervonen

Correction to: 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 Acceptability Study pp. 267-267

Suzanne McDonald, Samuel X. Tan, Shamima Banu, Mieke Driel, James M. McGree, Geoffrey Mitchell and Jane Nikles

Volume 15, issue 1, 2022

Validated Tools to Measure Costs for Patients: A Systematic Review pp. 3-19

Thomas G. Poder, Lucien P. Coulibaly, Myriam Gaudreault, Simon Berthelot and Maude Laberge

An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis pp. 21-38

Kara Schick-Makaroff, Adrienne Levay, Stephanie Thompson, Rachel Flynn, Richard Sawatzky, Onouma Thummapol, Scott Klarenbach, Mehri Karimi-Dehkordi and Joanne Greenhalgh

A Systematic Review of Discrete Choice Experiments and Conjoint Analysis on Genetic Testing pp. 39-54

Semra Ozdemir, Jia Jia Lee, Isha Chaudhry and Remee Rose Quintana Ocampo

A Systematic and Critical Review of Discrete Choice Experiments in Asthma and Chronic Obstructive Pulmonary Disease pp. 55-68

Hannah Collacott, Dian Zhang, Sebastian Heidenreich and Tommi Tervonen

Evaluating the Consistency of Patient Preference Estimates: Systematic Variation in Survival—Adverse Event Trade-Offs in Patients with Cancer or Cardiovascular Disease pp. 69-75

Kevin Marsh and Nicolas Krucien

Identifying New Zealand Public Preferences for Pharmacist Prescribers in Primary Care: A Discrete Choice Experiment pp. 77-92

Rakhee Raghunandan, Kirsten Howard, Carlo A. Marra, June Tordoff and Alesha Smith

Patient Perspectives and Experiences of Preventive Treatments and Self-Injectable Devices for Migraine: A Focus Group Study pp. 93-108

Jaein Seo, Charlie A. Smith, Caitlin Thomas, Tommi Tervonen, Asha Hareendran, Janet H. Ford, Virginia L. Stauffer, Robert A. Nicholson, Kevin Harrison Duffy and Antje Tockhorn-Heidenreich

Towards Personalising the Use of Biologics in Rheumatoid Arthritis: A Discrete Choice Experiment pp. 109-119

Caroline M Vass, Anne Barton and Katherine Payne

Dealing with Discontinuity in Cancer Care Trajectories: Patients’ Solutions pp. 121-130

Debbie Vermond, Souad Habhoubi, Esther Groot, Larike Bronkhorst, Niek Wit and Dorien Zwart

Patient-Reported Outcomes in the Phase III BRIGHTE Trial of the HIV-1 Attachment Inhibitor Prodrug Fostemsavir in Heavily Treatment-Experienced Individuals pp. 131-143

Sarah-Jane Anderson, Miranda Murray, David Cella, Robert Grossberg, Debbie Hagins, William Towner, Marcia Wang, Andrew Clark, Amy Pierce, Cyril Llamoso, Peter Ackerman and Max Lataillade

Correction to: A Systematic and Critical Review of Discrete Choice Experiments in Asthma and Chronic Obstructive Pulmonary Disease pp. 145-145

Hannah Collacott, Dian Zhang, Sebastian Heidenreich and Tommi Tervonen