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 10, issue 6, 2017

Innovation in Chronic Kidney Disease: The Need for the Patient Voice pp. 673-676

Kevin Fowler

Assessing Preference-Based Outcome Measures for Overactive Bladder: An Evaluation of Patient-Reported Outcome Data from the BESIDE Clinical Trial pp. 677-686

Mike Herdman, Jameel Nazir, Zalmai Hakimi, Emad Siddiqui, Moses Huang, Marco Pavesi, Scott MacDiarmid, Marcus J. Drake and Nancy Devlin

Individual Preferences for Child and Adolescent Vaccine Attributes: A Systematic Review of the Stated Preference Literature pp. 687-700

Christine Michaels-Igbokwe, Shannon MacDonald and Gillian R. Currie

Views of the UK General Public on Important Aspects of Health Not Captured by EQ-5D pp. 701-709

Koonal Shah, Brendan Mulhern, Louise Longworth and M. F. Janssen

Patients’ Lived Experiences of Nocturia: A Qualitative Study of the Evening, the Night, and the Next Day pp. 711-718

Andrew Trigg, Fredrik L. Andersson, Natalie V. J. Aldhouse, Donald L. Bliwise and Helen Kitchen

Talking About Breast Cancer: Which Symptoms and Treatment Side Effects are Important to Patients with Advanced Disease? pp. 719-727

Anna Niklasson, Jean Paty and Anna Rydén

Patients’ Awareness, Usage and Impact of Hospital Report Cards in the US pp. 729-738

Martin Emmert and Mark Schlesinger

Choosing a Doctor: Does Presentation Format Affect the Way Consumers Use Health Care Performance Information? pp. 739-751

Patricia Kenny, Stephen Goodall, Deborah J. Street and Jessica Greene

Development and Validation of a Cross-Country Hospital Patient Quality of Care Assessment Tool in Europe pp. 753-761

Amanda Villiers-Tuthill, Karolina Doulougeri, Hannah McGee, Anthony Montgomery, Efharis Panagopoulou and Karen Morgan

Patient and Public Preferences for Treatment Attributes in Parkinson’s Disease pp. 763-772

Marieke G. M. Weernink, Janine A. Til, Catharina G. M. Groothuis-Oudshoorn and Maarten J. IJzerman

Identifying and Prioritizing the Barriers and Facilitators to the Self-Management of Type 2 Diabetes Mellitus: A Community-Centered Approach pp. 773-783

Allison H. Oakes, Vincent S. Garmo, Lee R. Bone, Daniel R. Longo, Jodi B. Segal and John F. P. Bridges

Does Patient Preference Measurement in Decision Aids Improve Decisional Conflict? A Randomized Trial in Men with Prostate Cancer pp. 785-798

Joseph D. Shirk, Catherine M. Crespi, Josemanuel D. Saucedo, Sylvia Lambrechts, Ely Dahan, Robert Kaplan and Christopher Saigal

The Health-Related Quality of Life of Chinese Patients on Hemodialysis and Peritoneal Dialysis pp. 799-808

Julie Yun Chen, Eric Yuk Fai Wan, Edmond Pui Hang Choi, Anca Ka Chun Chan, Karina Hiu Yen Chan, Joyce Pui Yan Tsang and Cindy Lo Kuen Lam

Volume 10, issue 5, 2017

The Ball is in Your Court: Agenda for Research to Advance the Science of Patient Preferences in the Regulatory Review of Medical Devices in the United States pp. 531-536

Bennett Levitan, A. Brett Hauber, Marina G. Damiano, Ross Jaffe and Stephanie Christopher

Revolutionizing Informed Consent: Empowering Patients with Certified Decision Aids pp. 537-539

Thaddeus Mason Pope and Daniel Lessler

Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases pp. 541-544

Jennifer L. Purks, Erin E. Wilhelm, Ira Shoulson, John Creveling, E. Ray Dorsey, Telba Irony, Tara M. LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot and Karen E. Anderson

Deliberative Engagement Methods for Patient-Centered Outcomes Research pp. 545-552

Stephanie R. Morain, Danielle M. Whicher, Nancy E. Kass and Ruth R. Faden

Patients’ Preferences for Outcome, Process and Cost Attributes in Cancer Treatment: A Systematic Review of Discrete Choice Experiments pp. 553-565

Daniela R. Bien, Marion Danner, Vera Vennedey, Daniele Civello, Silvia M. Evers and Mickaël Hiligsmann

Symptoms and Impacts in Non-Metastatic Castration-Resistant Prostate Cancer: Qualitative Study Findings pp. 567-578

Erin L. Tomaszewski, Pierre Moise, Robert N. Krupnick, Jared Downing, Margaret Meyer, Shevani Naidoo and Stefan Holmstrom

Psychometric Validation of the Heart Failure Caregiver Questionnaire (HF-CQ®) pp. 579-592

Anna Strömberg, Nicola Bonner, Laura Grant, Bryan Bennett, Misook L. Chung, Tiny Jaarsma, Marie Louise Luttik, Eldrin F. Lewis, Frederico Calado and Celine Deschaseaux

Patient Experience of Symptoms and Side Effects when Treated with Osimertinib for Advanced Non-Small-Cell Lung Cancer: A Qualitative Interview Substudy pp. 593-603

Anna Rydén, Fiona Blackhall, Hye Ryun Kim, Rathi N. Pillai, Lauren Braam, Mona L. Martin and Andrew Walding

Health-Related Quality of Life in Chronic HCV-Infected Patients Switching to Pegylated-Interferon-Free Regimens (ANRS CO20 CUPIC Cohort Study and SIRIUS Trial) pp. 605-614

Maria Patrizia Carrieri, Camelia Protopopescu, Zobair Younossi, Antoine Vilotitch, Hélène Fontaine, Ventzislava Petrov-Sanchez, Fabienne Marcellin, Fabrice Carrat, Christophe Hézode and Marc Bourlière

Qualitative Assessment of the Symptoms and Impact of Pancreatic Exocrine Insufficiency (PEI) to Inform the Development of a Patient-Reported Outcome (PRO) Instrument pp. 615-628

Colin D. Johnson, Rob Arbuckle, Nicola Bonner, Gary Connett, Enrique Dominguez-Munoz, Philippe Levy, Doris Staab, Nicola Williamson and Markus M. Lerch

Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire) pp. 629-642

Merel L. Kimman, Adrienne H. Rotteveel, Marlies Wijsenbeek, Rémy Mostard, Nelleke C. Tak, Xana van Jaarsveld, Marjolein Storm, Kioa L. Wijnsma, Marielle Gelens, Nicole C. A. J. van de Kar, Jack Wetzels and Carmen D. Dirksen

Patient Preferences for Pain Management in Advanced Cancer: Results from a Discrete Choice Experiment pp. 643-651

David M. Meads, John L. O’Dwyer, Claire T. Hulme, Phani Chintakayala, Karen Vinall-Collier and Michael I. Bennett

Understanding Treatment Burden for Children Treated for Growth Hormone Deficiency pp. 653-666

Meryl Brod, Lise Højbjerre, Suzanne Lessard Alolga, Jane F. Beck, Lars Wilkinson and Michael Højby Rasmussen

Erratum to: Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases pp. 667-668

Jennifer L. Purks, Erin E. Wilhelm, Ira Shoulson, John Creveling, E. Ray Dorsey, Telba Irony, Tara M. LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot and Karen E. Anderson

Volume 10, issue 4, 2017

Art and Science of Instrument Development for Stated-Preference Methods pp. 377-379

Ellen M. Janssen and John F. P. Bridges

Is Financial Literacy a Determinant of Health? pp. 381-387

Melanie Meyer

Measuring Compassion in Healthcare: A Comprehensive and Critical Review pp. 389-405

Shane Sinclair, Lara B. Russell, Thomas F. Hack, Jane Kondejewski and Richard Sawatzky

Self-Care of People with Chronic Obstructive Pulmonary Disease: A Meta-Synthesis pp. 407-427

Marco Clari, Maria Matarese, Dhurata Ivziku and Maria Grazia Marinis

“They Are Talking About Me, but Not with Me”: A Focus Group Study to Explore the Patient Perspective on Interprofessional Team Meetings in Primary Care pp. 429-438

Jerôme Jean Jacques Dongen, Maarten Wit, Hester Wilhelmina Henrica Smeets, Esther Stoffers, Marloes Amantia Bokhoven and Ramon Daniëls

Development of a Report Card for Identifying Local Sublingual Immunotherapy Events in Clinical Trials pp. 439-446

Josephine Norquist, Emuella Flood, Tiffany Tanzosh, Haojie Li, Beata Iskold, Thelma Rose Ganser and Helen Marson-Smith

EQ-5D-5L and SF-6D Utility Measures in Symptomatic benign Thyroid Nodules: Acceptability and Psychometric Evaluation pp. 447-454

Carlos K. H. Wong, Brian H. H. Lang, Hill M. S. Yu and Cindy L. K. Lam

Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study pp. 455-462

Emma Dures, Sarah Hewlett, Jane Lord, Clive Bowen, Neil McHugh and William Tillett

Preparing Parents to Make An Informed Choice About Antibiotic Use for Common Acute Respiratory Infections in Children: A Randomised Trial of Brief Decision Aids in a Hypothetical Scenario pp. 463-474

Peter D. Coxeter, Chris B. Del Mar and Tammy C. Hoffmann

Discrete Choice Experiment Attribute Selection Using a Multinational Interview Study: Treatment Features Important to Patients with Type 2 Diabetes Mellitus pp. 475-487

Anna Rydén, Stephanie Chen, Emuella Flood, Beverly Romero and Susan Grandy

Speaking Up: How Patient and Physician Voices Shaped a Trial to Improve Goals-of-Care Discussions pp. 489-501

Rachel Solomon, Cardinale Smith, Jay Kallio, Amy Fenollosa, Barbara Benerofe, Laurence Jones, Kerin Adelson, Jason P. Gonsky, Carolyn Messner and Nina A. Bickell

Comment on: “Moving from Patient Advocacy to Partnership: A Long and Bumpy Road” pp. 503-503

Alain Braillon

Author’s Reply to Braillon: “Moving from Patient Advocacy to Partnership: A Long and Bumpy Road” pp. 505-505

Durhane Wong-Rieger

Health Preference Research: An Overview pp. 507-510

Benjamin M. Craig, Emily Lancsar, Axel C. Mühlbacher, Derek S. Brown and Jan Ostermann

Preferences for Health Interventions: Improving Uptake, Adherence, and Efficiency pp. 511-514

Jan Ostermann, Derek S. Brown, Esther W. Bekker-Grob, Axel C. Mühlbacher and Shelby D. Reed

Health Valuation: Demonstrating the Value of Health and Lifespan pp. 515-517

Elly A. Stolk, Benjamin M. Craig, Brendan Mulhern and Derek S. Brown

Assessment of Individual Patient Preferences to Inform Clinical Practice pp. 519-521

Jennifer Anne Whitty, Liana Fraenkel, Christopher S. Saigal, Catharina G. M. Groothuis-Oudshoorn, Dean A. Regier and Deborah A. Marshall

Giving Patients a Meaningful Voice in United States Regulatory Decision Making: The Role for Health Preference Research pp. 523-526

F. Reed Johnson, Kathleen Beusterien, Semra Özdemir and Leslie Wilson

Giving Patients a Meaningful Voice in European Health Technology Assessments: The Role of Health Preference Research pp. 527-530

Axel C. Mühlbacher and F. Reed Johnson

Volume 10, issue 3, 2017

Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project pp. 263-266

Esther W. Bekker-Grob, Conny Berlin, Bennett Levitan, Karim Raza, Kalliopi Christoforidi, Irina Cleemput, Jana Pelouchova, Harald Enzmann, Nigel Cook and Mats G. Hansson

Seeing is Engaging: Vlogs as a Tool for Patient Engagement pp. 267-270

Joy L. Lee, Mary Frey, Peter Frey, Ilene L. Hollin and Albert W. Wu

Moving from Patient Advocacy to Partnership: A Long and Bumpy Road pp. 271-276

Durhane Wong-Rieger

Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges pp. 277-282

Ahmed Rashid, Victoria Thomas, Toni Shaw and Gillian Leng

Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review pp. 283-293

Vanessa C. Delisle, Stephanie T. Gumuchian, Danielle B. Rice, Alexander W. Levis, Lorie A. Kloda, Annett Körner and Brett D. Thombs

A Systematic Review of Financial Toxicity Among Cancer Survivors: We Can’t Pay the Co-Pay pp. 295-309

Louisa G. Gordon, Katharina M. D. Merollini, Anthony Lowe and Raymond J. Chan

Communicating Uncertainty in Benefits and Harms: A Review of Patient Decision Support Interventions pp. 311-319

Nick Bansback, Madelaine Bell, Luke Spooner, Alysa Pompeo, Paul K. J. Han and Mark Harrison

Development and Content Validity of the Statin Experience Assessment Questionnaire (SEAQ)© pp. 321-334

Terry A. Jacobson, Steven V. Edelman, Nina Galipeau, Alan L. Shields, Usha G. Mallya, Andrew Koren and Michael H. Davidson

What’s Important to the Patient? Informational Needs of Patients Making Decisions About Hepatitis C Treatment pp. 335-344

Donna M. Evon, Carol E. Golin, Teodora Stoica, Rachel E. Jones, Sarah J. Willis, Joseph Galanko and Michael W. Fried

The Voice of the Patient Methodology: A Novel Mixed-Methods Approach to Identifying Treatment Goals for Men with Prostate Cancer pp. 345-352

Christopher S. Saigal, Sylvia I. Lambrechts, V. Seenu Srinivasan and Ely Dahan

Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E pp. 353-365

Mendwas Dzingina, Irene J. Higginson, Paul McCrone and Fliss E. M. Murtagh

Examination of the Applicability of the Disabilities of the Arm, Shoulder and Hand (DASH) Questionnaire to Patients with Hand Injuries and Diseases Using Rasch Analysis pp. 367-376

Kathrin Braitmayer, Caroline Dereskewitz, Cornelia Oberhauser, Klaus-Dieter Rudolf and Michaela Coenen

Volume 10, issue 2, 2017

Big Data: Will It Improve Patient-Centered Care? pp. 133-139

Denzil Fiebig

Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT) pp. 141-152

Maarten Wit, John R. Kirwan, Peter Tugwell, Dorcas Beaton, Maarten Boers, Peter Brooks, Sarah Collins, Philip G. Conaghan, Maria-Antonietta D’Agostino, Cathie Hofstetter, Rod Hughes, Amye Leong, Ann Lyddiatt, Lyn March, James May, Pamela Montie, Pamela Richards, Lee S. Simon, Jasvinder A. Singh, Vibeke Strand, Marieke Voshaar, Clifton O. Bingham and Laure Gossec

The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature pp. 153-162

Randall Winnette, Lisa M. Hess, Steven J. Nicol, Datchen Fritz Tai and Catherine Copley-Merriman

Factors Affecting Patients’ Perception On, and Adherence To, Anticoagulant Therapy: Anticipating the Role of Direct Oral Anticoagulants pp. 163-185

Ekta Y. Pandya and Beata Bajorek

A Review of HIV-Specific Patient-Reported Outcome Measures pp. 187-202

Kim Engler, David Lessard and Bertrand Lebouché

Impact of Measuring Patient-Reported Outcomes in Dermatology Drug Development pp. 203-213

Catherine Copley-Merriman, Susan Zelt, Marci Clark and Ari Gnanasakthy

The Rest of the Story: A Qualitative Study of Complementing Standardized Assessment Data with Informal Interviews with Older Patients and Families pp. 215-224

Claire Lafortune, Jacobi Elliott, Mary Y. Egan and Paul Stolee

Symptoms and Functional Limitations in the First Year Following a Myocardial Infarction: A Qualitative Study pp. 225-235

Chad Gwaltney, Matthew Reaney, Meaghan Krohe, Mona M. Martin, Heather Falvey and Patrick Mollon

The Therapy Attitudes and Process Questionnaire: A Brief Measure of Factors Related to Psychotherapy Appointment Attendance pp. 237-250

Bonnie A. Clough, Sonia M. Nazareth and Leanne M. Casey

A Latent Class Analysis to Identify Variation in Caregivers’ Preferences for their Child’s Attention-Deficit/Hyperactivity Disorder Treatment: Do Stated Preferences Match Current Treatment? pp. 251-262

Xinyi Ng, John F. P. Bridges, Melissa M. Ross, Emily Frosch, Gloria Reeves, Charles E. Cunningham and Susan dosReis

Volume 10, issue 1, 2017

A Systematic Review and Meta-Synthesis of Patients’ Experiences and Perceptions of Seeking and Using Benzodiazepines and Z-Drugs: Towards Safer Prescribing pp. 1-15

Coral Sirdifield, Susan Y. Chipchase, Sara Owen and Aloysius Niroshan Siriwardena

Patient Preferences for Oral Anticoagulation Therapy in Atrial Fibrillation: A Systematic Literature Review pp. 17-37

Thomas Wilke, Sabine Bauer, Sabrina Mueller, Thomas Kohlmann and Rupert Bauersachs

Patient-Centered Outcome Measures to Assess Functioning in Randomized Controlled Trials of Low-Vision Rehabilitation: A Review pp. 39-49

Joshua R. Ehrlich, George L. Spaeth, Noelle E. Carlozzi and Paul P. Lee

Content Validity for the VVSymQ® Instrument: A New Patient-Reported Outcome Measure for the Assessment of Varicose Veins Symptoms pp. 51-63

Jean Paty, Celeste A. Elash and Diane M. Turner-Bowker

What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic Interventions pp. 65-79

Sophi Tatlock, Katja Rüdell, Charlotte Panter, Rob Arbuckle, Leslie R. Harrold, William J. Taylor and Tara Symonds

Item Reduction, Scoring, and First Validation of the ACCEPTance by the Patients of their Treatment (ACCEPT©) Questionnaire pp. 81-92

Benoit Arnould, Hélène Gilet, Donald L. Patrick and Catherine Acquadro

Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care pp. 93-103

Katherine Treiman, Lauren McCormack, Murrey Olmsted, Nancy Roach, Bryce B. Reeve, Christa E. Martens, Rebecca R. Moultrie and Hanna Sanoff

EQ-5D Health Utility Scores: Data from a Comprehensive Canadian Cancer Centre pp. 105-115

Hiten Naik, Doris Howell, Susie Su, Xin Qiu, M. Catherine Brown, Ashlee Vennettilli, Margaret Irwin, Vivien Pat, Hannah Solomon, Tian Wang, Henrique Hon, Lawson Eng, Mary Mahler, Henry Thai, Valerie Ho, Wei Xu, Soo Jin Seung, Nicole Mittmann and Geoffrey Liu

Readability and Comprehension of the Geriatric Depression Scale and PROMIS® Physical Function Items in Older African Americans and Latinos pp. 117-131

Sylvia H. Paz, Loretta Jones, José L. Calderón and Ron D. Hays