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 14, issue 6, 2021

FDA Guidance on Assessment of Patient-Reported Outcomes in Cancer Trials: A Breath of Fresh Air or a Storm in a Teacup? pp. 695-697

Ari Gnanasakthy

Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions pp. 699-710

W. Benjamin Nowell, Peter A. Merkel, Robert N. McBurney, Kalen Young, Shilpa Venkatachalam, Dianne G. Shaw, Angela Dobes, Emily Cerciello, Laura Kolaczkowski, Jeffrey R. Curtis and Michael D. Kappelman

Conducting Qualitative Research Online: Challenges and Solutions pp. 711-718

Stacy M. Carter, Patti Shih, Jane Williams, Chris Degeling and Julie Mooney-Somers

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews pp. 719-740

Ena Niño de Guzmán Quispe, Laura Martínez García, Carola Orrego Villagrán, Monique Heijmans, Rosa Sunol, David Fraile-Navarro, Javier Pérez-Bracchiglione, Lyudmil Ninov, Karla Salas-Gama, Andrés Viteri García and Pablo Alonso-Coello

Methods for Conducting Stated Preference Research with Children and Adolescents in Health: A Scoping Review of the Application of Discrete Choice Experiments pp. 741-758

Christine Michaels-Igbokwe, Gillian R. Currie, Bryanne L. Kennedy, Karen V. MacDonald and Deborah A. Marshall

Patient-Reported Experience and Outcome Measures in People Living with Diabetes: A Scoping Review of Instruments pp. 759-773

Jimmy Martin-Delgado, Mercedes Guilabert and José Mira-Solves

A Systematic Review of Discrete Choice Experiments in Oncology Treatments pp. 775-790

Hannah Collacott, Vikas Soekhai, Caitlin Thomas, Anne Brooks, Ella Brookes, Rachel Lo, Sarah Mulnick and Sebastian Heidenreich

Don’t Forget the Caregivers! A Discrete Choice Experiment Examining Caregiver Views of Integrated Youth Services pp. 791-802

Lisa D. Hawke, Lehana Thabane, Leanne Wilkins, Steve Mathias, Srividya Iyer and Joanna Henderson

Valuing End-of-Life Care for Older People with Advanced Cancer: Is Dying at Home Important? pp. 803-813

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

Designing HIV Testing and Self-Testing Services for Young People in Nigeria: A Discrete Choice Experiment pp. 815-826

Jason J. Ong, Ucheoma Nwaozuru, Chisom Obiezu-Umeh, Collins Airhihenbuwa, Hong Xian, Fern Terris-Prestholt, Titilola Gbajabiamila, Adesola Z. Musa, David Oladele, Ifeoma Idigbe, Agatha David, Jane Okwuzu, Tajudeen Bamidele, Juliet Iwelunmor, Joseph D. Tucker and Oliver Ezechi

The Impact of the Risk Functional Form Assumptions on Maximum Acceptable Risk Measures pp. 827-836

Juan Marcos Gonzalez and Marco Boeri

Assessing Patient Preferences in Rare Diseases: Direct Preference Elicitation in the Rare Chronic Kidney Disease, Immunoglobulin A Nephropathy pp. 837-847

Kevin Marsh, Kerrie-Anne Ho, Rachel Lo, Nancy Zaour, Aneesh Thomas George and Nigel S. Cook

Patient-Reported Outcomes Through 1 Year of an HIV-1 Clinical Trial Evaluating Long-Acting Cabotegravir and Rilpivirine Administered Every 4 or 8 Weeks (ATLAS-2M) pp. 849-862

Vasiliki Chounta, Edgar T. Overton, Anthony Mills, Susan Swindells, Paul D. Benn, Simon Vanveggel, Rodica Solingen-Ristea, Yuanyuan Wang, Krischan J. Hudson, Mark S. Shaefer, David A. Margolis, Kimberly Y. Smith and William R. Spreen

Comment on Health Literacy: The Common Denominator of Healthcare Progress pp. 869-870

Halah Ibrahim and Satish Chandrasekhar Nair

Authors’ Reply to Ibrahim and Nair’s Comment on: “Health Literacy: The Common Denominator of Healthcare Progress” pp. 871-871

Peter J. Pitts and Emily Freeman

Volume 14, issue 5, 2021

Methodological Priorities for Patient Preferences Research: Stakeholder Input to the PREFER Public–Private Project pp. 449-453

Ian P. Smith, Rachael L. DiSantostefano, Esther W. de Bekker-Grob, Bennett Levitan, Conny Berlin, Jorien Veldwijk and G. Ardine de Wit

Health Literacy: The Common Denominator of Healthcare Progress pp. 455-458

Peter J. Pitts and Emily Freeman

Time for Tele-TTO? Lessons Learned From Digital Interviewer-Assisted Time Trade-Off Data Collection pp. 459-469

Stefan A. Lipman

Patient Centeredness in Hepatitis C Direct-Acting Antiviral Treatment Delivery to People Who Inject Drugs: A Scoping Review pp. 471-484

Moaz Abdelwadoud, T. Joseph Mattingly, Hemanuel Arroyo Seguí, Emily F. Gorman and Eleanor M. Perfetto

The Use of Patient-Reported Outcome Measures in Rare Diseases and Implications for Health Technology Assessment pp. 485-503

Amanda Whittal, Michela Meregaglia and Elena Nicod

What Are the Preferences of Patients With Rheumatoid Arthritis for Treatment Modification? A Scoping Review pp. 505-532

Suz Jack Chan, Hui Yee Yeo, Lisa K. Stamp, Gareth J. Treharne and Carlo A. Marra

Development of a Patient-Reported Outcome Measure for Non-Alcoholic Steatohepatitis (NASH-CHECK): Results of a Qualitative Study pp. 533-543

Lynda C. Doward, Maria-Magdalena Balp, James Twiss, Christina Slota, Donna Cryer, Clifford A. Brass, Quentin M. Anstee and Arun J. Sanyal

Patient and Public Involvement Refines the Design of ProtOeus: A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer pp. 545-553

Owen J. Nicholas, Olivier Joseph, Annie Keane, Kate Cleary, Sue H. Campbell, Sarah H. Gwynne, Tom Crosby, Ganesh Radhakrishna and Maria A. Hawkins

Process- and Outcome-Based Financial Incentives to Improve Self-Management and Glycemic Control in People with Type 2 Diabetes in Singapore: A Randomized Controlled Trial pp. 555-567

Marcel Bilger, Mitesh Shah, Ngiap Chuan Tan, Cynthia Y. L. Tan, Filipinas G. Bundoc, Joann Bairavi and Eric A. Finkelstein

Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences pp. 569-579

Julia F. Slejko, Yoon Duk Hong, Jamie L. Sullivan, Robert M. Reed and Susan dosReis

Discordance Between Advanced Cancer Patients’ Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care pp. 581-589

Semra Ozdemir, Yubing Tian, Chetna Malhotra, Richard Harding, Gerald Choon Huat Koh, Nesaretnam Barr Kumarakulasinghe, Lai Heng Lee, Ssu Wynn Mon and Eric Finkelstein

A New Approach to Assessing Children’s Interpretation of Severity Qualifiers in a Multi-Attribute Utility Instrument–The EQ-5D-Y-5L: Development and Testing pp. 591-600

Sarah Derrett, Mike Herdman, Lucky G. Ngwira, Elizabeth Yohe Moore and Jennifer Jelsma

Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study pp. 601-612

A. Cecilia Jimenez-Moreno, Eline Overbeeke, Cathy Anne Pinto, Ian Smith, Jenny Sharpe, James Ormrod, Chiara Whichello, Esther W. Bekker-Grob, Kristin Bullok, Bennett Levitan, Isabelle Huys, G. Ardine Wit and Grainne Gorman

Patient Perceptions Regarding Multiple Myeloma and Its Treatment: Qualitative Evidence from Interviews with Patients in the United Kingdom, France, and Germany pp. 613-623

Jianming He, Ashley Duenas, Hannah Collacott, Annette Lam, Katharine S. Gries, Robin Carson, Dietrich Potthoff, Nicola Trevor and Tommi Tervonen

Patient-Evaluated Quality of Care is Related to Better Inflammatory Bowel Disease Outcomes: The IQCARO II Project pp. 625-634

Xavier Calvet, Fransesc Casellas, Roberto Saldaña, Daniel Carpio, Miguel Mínguez, Isabel Vera, Laura Marín and Berta Juliá

Should I Have Adjuvant Immunotherapy? An Interview Study Among Adults with Resected Stage 3 Melanoma and Their Partners pp. 635-647

Ann Livingstone, Donna Milne, Kathy Dempsey, Danielle Marie Muscat, Alexander M. Menzies, Kirsten Howard, Martin R. Stockler and Rachael L. Morton

Communicating Test Results from a General Health Check: Preferences from a Discrete Choice Experiment Survey pp. 649-660

Åsa Grauman, Mats Hansson, Stefan James, Brett Hauber and Jorien Veldwijk

Patient Preferences of Low-Dose Aspirin for Cardiovascular Disease and Colorectal Cancer Prevention in Italy: A Latent Class Analysis pp. 661-672

Tommi Tervonen, Pareen Vora, Jaein Seo, Nicolas Krucien, Kevin Marsh, Raffaele De Caterina, Ulrike Wissinger and Montse Soriano Gabarró

Experiences and Perspectives of Patients with Non-HIV-Associated Lipodystrophies and Their Caregivers: A Qualitative Study pp. 673-685

Aparna Gomes, Keziah Cook, Alex Wong, Edward Tuttle, A. Stratton and Rebecca Sanders

Improving Access and Quality of Health Care in the United States: Shared Goals Among Patient Advocates pp. 687-690

Elisabeth M. Oehrlein, Jason Harris, Alan Balch, Pat Furlong, Eric Hargis, Mary Woolley and Eleanor Perfetto

Correction to: Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences pp. 691-691

Julia F. Slejko, Yoon Duk Hong, Jamie L. Sullivan, Robert M. Reed and Susan dosReis

Correction to: Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study pp. 693-693

A. Cecilia Jimenez-Moreno, Eline Overbeeke, Cathy Anne Pinto, Ian Smith, Jenny Sharpe, James Ormrod, Chiara Whichello, Esther W. Bekker-Grob, Kristin Bullok, Bennett Levitan, Isabelle Huys, G. Ardine Wit and Grainne Gorman

Volume 14, issue 4, 2021

Patient and Public Involvement in Health Economics and Outcomes Research pp. 379-380

Paula Lorgelly

The Importance of Collaboration in Pursuit of Patient-Centered Value Assessment pp. 381-384

Mark T. Linthicum, Susan dosReis, Julia F. Slejko, T. Joseph Mattingly and Jennifer L. Bright

Patient Commentary: Added Value and Validity to Research Outcomes Through Thoughtful Multifaceted Patient-Oriented Research pp. 385-387

Tiasha Burch

Designing Discrete Choice Experiments Using a Patient-Oriented Approach pp. 389-397

Magda Aguiar, Mark Harrison, Sarah Munro, Tiasha Burch, K. Julia Kaal, Marie Hudson, Nick Bansback and Tracey-Lea Laba

Utilising Patient and Public Involvement in Stated Preference Research in Health: Learning from the Existing Literature and a Case Study pp. 399-412

Gemma E. Shields, Lindsey Brown, Adrian Wells, Lora Capobianco and Caroline Vass

Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development pp. 413-420

Elizabeth Clearfield, Ellen Tambor, Ellen M. Janssen and Donna A. Messner

Patient and Public Involvement (PPI) in Health Economics Methodology Research: Reflections and Recommendations pp. 421-427

Hareth Al-Janabi, Jenny Coles, John Copping, Nishit Dhanji, Carol McLoughlin, Jacky Murphy and Jean Nicholls

Involving Patients in Health Economics Research: “The PACTS Principles” pp. 429-434

Annie Hawton, Kate Boddy, Rebecca Kandiyali, Lynn Tatnell, Andy Gibson and Elizabeth Goodwin

Developing a Framework for Public Involvement in Mathematical and Economic Modelling: Bringing New Dynamism to Vaccination Policy Recommendations pp. 435-445

Sophie Staniszewska, Edward M. Hill, Richard Grant, Peter Grove, Jarina Porter, Tinevimbo Shiri, Sue Tulip, Jane Whitehurst, Claire Wright, Samik Datta, Stavros Petrou and Matt Keeling

Correction to: Developing a Framework for Public Involvement in Mathematical and Economic Modelling: Bringing New Dynamism to Vaccination Policy Recommendations pp. 447-447

Sophie Staniszewska, Edward M. Hill, Richard Grant, Peter Grove, Jarina Porter, Tinevimbo Shiri, Sue Tulip, Jane Whitehurst, Claire Wright, Samik Datta, Stavros Petrou and Matt Keeling

Volume 14, issue 3, 2021

Using Societal Values to Inform Public Health Policy During the COVID-19 Pandemic: The Role of Health Preference Research pp. 303-307

Rachael L. DiSantostefano and Fern Terris-Prestholt

United States COVID-19 Vaccination Preferences (CVP): 2020 Hindsight pp. 309-318

Benjamin Matthew Craig

Public Preferences for Allocating Ventilators in an Intensive Care Unit: A Discrete Choice Experiment pp. 319-330

Richard Norman, Suzanne Robinson, Helen Dickinson, Iestyn Williams, Elena Meshcheriakova, Kathleen Manipis and Matthew Anstey

Public Preferences in Priority Setting when Admitting Patients to the ICU During the COVID-19 Crisis: A Pilot Study pp. 331-338

Merle Gijsbers, Iris Elise Keizer, Stephanie Else Schouten, Janneke Louise Trompert, Catharina G. M. Groothuis-Oudshoorn and Janine Astrid Til

QALYs for COVID-19: A Comparison of US EQ-5D-5L Value Sets pp. 339-345

Stephen Poteet and Benjamin M. Craig

Public Preferences for Government Response Policies on Outbreak Control pp. 347-358

Semra Ozdemir, Si Ning Germaine Tan, Isha Chaudhry, Chetna Malhotra and Eric Andrew Finkelstein

Exploring the Trade-Off Between Economic and Health Outcomes During a Pandemic: A Discrete Choice Experiment of Lockdown Policies in Australia pp. 359-371

Kathleen Manipis, Deborah Street, Paula Cronin, Rosalie Viney and Stephen Goodall

Willingness to Wait for a Vaccine Against COVID-19: Results of a Preference Survey pp. 373-377

Tommi Tervonen, Aura Cecilia Jimenez-Moreno, Nicolas Krucien, Heather Gelhorn, Kevin Marsh and Sebastian Heidenreich

Volume 14, issue 2, 2021

Eliciting Preferences for HIV Prevention Technologies: A Systematic Review pp. 151-174

S. Wilson Beckham, Norah L. Crossnohere, Margaret Gross and John F. P. Bridges

Patient Perspectives of Quality of the Same-Day Antiretroviral Therapy Initiation Process in Gauteng Province, South Africa: Qualitative Dominant Mixed-Methods Analysis of the SLATE II Trial pp. 175-186

Nancy A. Scott, Mhairi Maskew, Rachel M. Fong, Ingrid E. Olson, Alana T. Brennan, Matthew P. Fox, Lungisile Vezi, Peter D. Ehrenkranz and Sydney Rosen

Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values pp. 187-196

Sarah Costa, Dean A. Regier, Adam J. N. Raymakers and Samantha Pollard

Patient- and Caregiver-Reported Burden of Transfusion-Dependent β-Thalassemia Measured Using a Digital Application pp. 197-208

Clark Paramore, Laurice Levine, Emma Bagshaw, Chengyu Ouyang, Amber Kudlac and Mark Larkin

Measurement Properties of the EQ-5D-5L and EQ-5D-3L in Six Commonly Diagnosed Cancers pp. 209-222

Xueyun Zeng, Mingjie Sui, Bo Liu, Hongbin Yang, Rui Liu, Rachel Lee-Yin Tan, Juan Xu, Erwei Zheng, Jinjin Yang, Chunyu Liu, Weidong Huang, Hongjuan Yu and Nan Luo

Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury pp. 223-240

Cassandra Mah, Vanessa K. Noonan, Stirling Bryan and David G. T. Whitehurst

High-Efficacy Disease-Modifying Therapies in People with Relapsing–Remitting Multiple Sclerosis: The Role of Risk Attitude in Treatment Decisions pp. 241-248

Jorge Maurino, Javier Sotoca, Ángel P. Sempere, Luis Brieva, Carlos López de Silanes, Ana B. Caminero, María Terzaghi, Julia Gracia-Gil and Gustavo Saposnik

Development and Validation of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) pp. 249-268

Stacie Hudgens, Andrea Phillips-Beyer, Louise Newton, Dalma Seboek Kinter and Heike Benes

What Factors Influence Non-Participation Most in Colorectal Cancer Screening? A Discrete Choice Experiment pp. 269-281

Esther W. Bekker-Grob, Bas Donkers, Jorien Veldwijk, Marcel F. Jonker, Sylvia Buis, Jan Huisman and Patrick Bindels

How Do Respondents Interpret and View the EQ-VAS? A Qualitative Study of Three Asian Populations pp. 283-293

Rachel Lee-Yin Tan, Zhihao Yang, Ataru Igarashi, Michael Herdman and Nan Luo

Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example pp. 295-300

Elisabeth M. Oehrlein, Xuemei Luo, Mirko Savone, Trudie Lobban, Amiee Kang, Brian Lee, Rex Gale, Silke Schoch and Eleanor Perfetto

Correction to: Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids pp. 301-301

Monica Parry, Ann Kristin Bjørnnes, Karine Toupin-April, Adhiyat Najam, David Wells, Aditi Sivakumar, Dawn P. Richards, Tina Ceroni, Marianne Park, Anne K. Ellis, Ian Gilron and Susan Marlin

Volume 14, issue 1, 2021

Giving a Voice to Marginalised Groups for Health Care Decision Making pp. 5-10

Richard De Abreu Lourenço, Nancy Devlin, Kirsten Howard, Jason J. Ong, Julie Ratcliffe, Jo Watson, Esther Willing and Elisabeth Huynh

Generating Relevant Information from Patients in the Technology-Enhanced Era of Patient-Focused Drug Development: Opportunities and Challenges pp. 11-16

Matthew Reaney, Jennifer Cline, James C. Wilson and Michael Posey

Respondent Understanding in Discrete Choice Experiments: A Scoping Review pp. 17-53

Alison Pearce, Mark Harrison, Verity Watson, Deborah J. Street, Kirsten Howard, Nick Bansback and Stirling Bryan

Mobilising the Next Generation of Stated-Preference Studies: the Association of Access Device with Choice Behaviour and Data Quality pp. 55-63

Caroline Vass and Marco Boeri

Benefit–Risk or Risk–Benefit Trade-Offs? Another Look at Attribute Ordering Effects in a Pilot Choice Experiment pp. 65-74

Sebastian Heidenreich, Andrea Phillips-Beyer, Bruno Flamion, Melissa Ross, Jaein Seo and Kevin Marsh

Development of a Conceptual Model of Chronic Lymphocytic Leukemia to Better Understand the Patient Experience pp. 75-87

Daniel Eek, Matthew Blowfield, Calvin Krogh, Helena Chung and Toby A. Eyre

Comparing the Preferences of Patients and the General Public for Treatment Outcomes in Type 2 Diabetes Mellitus pp. 89-100

Norah L. Crossnohere, Sarah Janse, Ellen Janssen and John F. P. Bridges

Testing and Psychometric Validation of a Pediatric Instrument to Self-Assess Symptoms of the Common Cold pp. 101-117

Rob Arbuckle, Patricia Halstead, Chris Marshall, Brenda Zimmerman, Kate Bolton, Antoine Regnault and Cathy Gelotte

Use of Patient Preferences in Health Technology Assessment: Perspectives of Canadian, Belgian and German HTA Representatives pp. 119-128

Eline Overbeeke, Valérie Forrester, Steven Simoens and Isabelle Huys

Utility Values for the CP-6D, a Cerebral Palsy-Specific Multi-Attribute Utility Instrument, Using a Discrete Choice Experiment pp. 129-138

Mina Bahrampour, Richard Norman, Joshua Byrnes, Martin Downes and Paul Scuffham

Letter to the Editor in response to Greidanus et al., June 2020, “The Successful Return-To-Work Questionnaire for Cancer Survivors (I-RTW_CS): Development, Validity and Reproducibility” pp. 139-140

Masamitsu Kobayashi, Jun Kako, Kohei Kajiwara and Ayako Ogata

Response to Comment on “The Successful Return-To-Work Questionnaire for Cancer Survivors (I-RTW_CS): Development, Validity and Reproducibility” pp. 141-143

Michiel A. Greidanus, Angela G. E. M. Boer, Angelique E. Rijk, Monique H. W. Frings-Dresen and Sietske J. Tamminga

Comment on “Feasibility of Measuring Preferences for Chemotherapy Among Early-Stage Breast Cancer Survivors Using a Direct Rank Ordering Multicriteria Decision Analysis Versus a Time Trade-Off” pp. 145-146

Edouard Kujawski

Patient Feedback on Research Studies: How to Interpret Feedback from the ‘Aware’ Patient? pp. 147-148

Kelly T. Gleason and Hae-Ra Han

Correction to: Comparing the Preferences of Patients and the General Public for Treatment Outcomes in Type 2 Diabetes Mellitus pp. 149-149

Norah L. Crossnohere, Sarah Janse, Ellen Janssen and John F. P. Bridges