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 12, issue 6, 2019

Advancing the Use of Patient Preference Information as Scientific Evidence in Medical Product Evaluation: A Summary Report of the Patient Preference Workshop pp. 553-557

Heather L. Benz, Ting-Hsuan (Joyce) Lee, Jui-Hua Tsai, John F. P. Bridges, Sara Eggers, Megan Moncur, Fadia T. Shaya, Ira Shoulson, Erica S. Spatz, Leslie Wilson and Anindita Saha

Patient Preferences for Breast Cancer Treatment Interventions: A Systematic Review of Discrete Choice Experiments pp. 559-569

Renata Leborato Guerra, Luciana Castaneda, Rita de Cássia Ribeiro Albuquerque, Camila Belo Tavares Ferreira, Flávia de Miranda Corrêa, Ricardo Ribeiro Alves Fernandes and Liz Maria Almeida

Behavioral Economic Insights to Improve Medication Adherence in Adults with Chronic Conditions: A Scoping Review pp. 571-592

Jacqueline Roseleur, Gillian Harvey, Nigel Stocks and Jonathan Karnon

Effect of Treatment Preference in Randomized Controlled Trials: Systematic Review of the Literature and Meta-Analysis pp. 593-609

Dimittri Delevry and Quang A. Le

Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII) pp. 611-619

Jane R. Wells, Adam Gater, Chris Marshall, Theo Tritton, Parth Vashi and Sophia Kessabi

Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease pp. 621-629

Kelly M. Dumais, Nadeeka Dias, Laura Khurana, Sarah Tressel Gary, Brooke Witherspoon, Christopher J. Evans and Susan M. Dallabrida

What Matters Most for Treatment Decisions in Hepatitis C: Effectiveness, Costs, and Altruism pp. 631-638

T. Joseph Mattingly, Julia F. Slejko, Eleanor M. Perfetto, Shyamasundaran Kottilil and C. Daniel Mullins

Does Device or Connection Type Affect Health Preferences in Online Surveys? pp. 639-650

John D. Hartman and Benjamin M. Craig

Impact of Elagolix on Workplace and Household Productivity Among Women with Moderate to Severe Pain Associated with Endometriosis: A Pooled Analysis of Two Phase III Trials pp. 651-660

Eric S. Surrey, Ahmed M. Soliman, Hannah L. Palac and Sanjay K. Agarwal

Community-Based Participatory Research: Incorporating the Integral Voice of Community in Study Design pp. 661-663

Desirree Pizarro, Nicole K. Richards, Susan Coots, Elizabeth Crockett, Christopher P. Morley and Brooke A. Levandowski

Volume 12, issue 5, 2019

Support Tools for Preference-Sensitive Decisions in Healthcare: Where Are We? Where Do We Go? How Do We Get There? pp. 439-443

Jan Ostermann, Derek S. Brown, Janine A. Til, Nick Bansback, France Légaré, Deborah A. Marshall and Meenakshi Bewtra

Patient-Reported Outcome Measures in Atopic Dermatitis and Chronic Hand Eczema in Adults pp. 445-459

Amy Barrett, Julie Hahn-Pedersen, Nana Kragh, Emily Evans and Ari Gnanasakthy

Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review pp. 461-474

Isolde M. Busch, Francesca Moretti, Giulia Travaini, Albert W. Wu and Michela Rimondini

Systematic Review of Public Preferences for the Allocation of Donor Organs for Transplantation: Principles of Distributive Justice pp. 475-489

Carina Oedingen, Tim Bartling, Axel C. Mühlbacher, Harald Schrem and Christian Krauth

Do Non-participants at Screening have a Different Threshold for an Acceptable Benefit–Harm Ratio than Participants? Results of a Discrete Choice Experiment pp. 491-501

Tina Birgitte Hansen, Jes Sanddal Lindholt, Axel Diederichsen and Rikke Søgaard

Patient Experience with Congenital (Hereditary) Thrombotic Thrombocytopenic Purpura: A Conceptual Framework of Symptoms and Impacts pp. 503-512

Abiola O. Oladapo, Diane Ito, Christopher Hibbard, Stephanie E. Bean, Robert N. Krupnick and Bruce M. Ewenstein

Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA pp. 513-526

Rosanne Janssens, Selena Russo, Eline van Overbeeke, Chiara Whichello, Sarah Harding, Jürgen Kübler, Juhaeri Juhaeri, Karin Schölin Bywall, Alina Comanescu, Axel Hueber, Matthias Englbrecht, Nikoletta Nikolenko, Gabriella Pravettoni, Steven Simoens, Hilde Stevens, Richard Hermann, Bennett Levitan, Irina Cleemput, Esther de Bekker-Grob, Jorien Veldwijk and Isabelle Huys

Analysis of Clinical Trial Exit Interview Data in Patients with Treatment-Resistant Depression pp. 527-537

Sandy Lewis, Carla Romano, Geert Bruecker, James W. Murrough, Richard Shelton, Jaskaran B. Singh and Carol Jamieson

A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) pp. 539-549

Tonya A. Winders, Andrew M. Wilson, Monica J. Fletcher, Anthony McGuinness and David B. Price

Volume 12, issue 4, 2019

Towards Meaningful Engagement for the Patient Voice pp. 361-363

Peter J. Pitts

Health-Related Quality of Life in Patients with Adult-Onset Myotonic Dystrophy Type 1: A Systematic Review pp. 365-373

Erik Landfeldt, Josefin Edström, Cecilia Jimenez-Moreno, Baziel G. M. Engelen, Janbernd Kirschner and Hanns Lochmüller

Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust pp. 375-381

Elisabeth M. Oehrlein, Jennifer S. Graff, Jason Harris and Eleanor M. Perfetto

EQ-5D-5L is More Responsive than EQ-5D-3L to Treatment Benefit of Cataract Surgery pp. 383-392

Mihir Gandhi, Marcus Ang, Kelvin Teo, Chee Wai Wong, Yvonne Chung-Hsi Wei, Rachel Lee-Yin Tan, Mathieu F. Janssen and Nan Luo

Patient and Oncologist Preferences for the Treatment of Adults with Advanced Soft Tissue Sarcoma: A Discrete Choice Experiment pp. 393-404

Jasmina Ivanova, Lisa M. Hess, Viviana Garcia-Horton, Sophia Graham, Xinyue Liu, Yajun Zhu and Steven Nicol

Measuring the Burden of Schizophrenia Using Clinician and Patient-Reported Measures: An Exploratory Analysis of Construct Validity pp. 405-417

Matthew Franklin, Clara Mukuria, Brendan Mulhern, Irwin Tran, John Brazier and Stuart Watson

Validity and Reliability of a Novel Multimodal Questionnaire for the Assessment of Abdominal Symptoms in People with Cystic Fibrosis (CFAbd-Score) pp. 419-428

Anke Jaudszus, Elisa Zeman, Tatjana Jans, Elena Pfeifer, Harold Tabori, Christin Arnold, Ruth K. Michl, Michael Lorenz, Natalie Beiersdorf and Jochen G. Mainz

Correction to: Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study pp. 437-437

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

Volume 12, issue 3, 2019

Issues in the Design of Discrete Choice Experiments pp. 281-285

Richard Norman, Benjamin M. Craig, Paul Hansen, Marcel F. Jonker, John Rose, Deborah J. Street and Brendan Mulhern

A Guide to Measuring and Interpreting Attribute Importance pp. 287-295

Juan Marcos Gonzalez

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis pp. 297-305

Karin Schölin Bywall, Jorien Veldwijk, Mats G. Hansson and Ulrik Kihlbom

Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale pp. 307-317

Domingo Orozco-Beltrán, Javier Toro, María J. Galindo, Ignacio Marín-Jiménez, Francesc Casellas, María J. Fuster-RuizdeApodaca, María L. García-Vivar, Antonio Hormigo-Pozo, Mercedes Guilabert, Nuria Sánchez-Vega, Gonzalo Fernández and Luis Cea-Calvo

High Proportion of Subjective Component to the Disease Activity Score is Associated with Favorable Response to Abatacept in Rheumatoid Arthritis pp. 319-326

Jeong Seok Lee, Harris Ahmad, Seung-Cheol Shim, Sang-Cheol Bae, Yeong Wook Song and Eun Young Lee

Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach pp. 327-337

Brownsyne Tucker Edmonds, Shelley M. Hoffman, Dustin Lynch, Erin Jeffries, Kelli Jenkins, Sarah Wiehe, Nerissa Bauer and Miriam Kuppermann

Elicitation of Health-Related Utility in Perianal Fistula in Crohn’s Disease pp. 339-348

Louise Longworth, Donna Fountain, Jeshika Singh, Ismail Azzabi, Glynn Owen, Ulf Lundstam and Shaji Sebastian

The Value of Treatment Processes in Germany: A Discrete Choice Experiment on Patient Preferences in Complementary and Conventional Medicine pp. 349-360

Daniela Adam, Theresa Keller, Axel Mühlbacher, Maximilian Hinse, Katja Icke, Michael Teut, Benno Brinkhaus and Thomas Reinhold

Volume 12, issue 2, 2019

A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients pp. 171-181

Ahmad Shahabeddin Parizi, Paul F. M. Krabbe, Erik Buskens, Stephan J. L. Bakker and Karin M. Vermeulen

Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties pp. 183-197

Nuriye Kupeli, Bridget Candy, Gabrielle Tamura-Rose, Guy Schofield, Natalie Webber, Stephanie E. Hicks, Theodore Floyd, Bella Vivat, Elizabeth L. Sampson, Patrick Stone and Trefor Aspden

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies pp. 199-212

Laura Ellen Ashcraft, Miya Asato, Amy J. Houtrow, Dio Kavalieratos, Elizabeth Miller and Kristin N. Ray

Impact of Carotid Artery Stenosis on Quality of Life: A Systematic Review pp. 213-222

Ahmed Aber, Aoife Howard, Helen Buckley Woods, Georgina Jones and Jonathan Michaels

Treatment Decisions for Advanced Non-Squamous Non-Small Cell Lung Cancer: Patient and Physician Perspectives on Maintenance Therapy pp. 223-233

Suzanne McMullen, Lisa M. Hess, Edward S. Kim, Benjamin Levy, Mohamed Mohamed, David Waterhouse, Antoinette Wozniak, Sarah Goring, Kerstin Müller, Catherine Muehlenbein, Himani Aggarwal, Yajun Zhu, Ana B. Oton, Jennifer L. Ersek and Katherine B. Winfree

General Population vs. Patient Preferences in Anticoagulant Therapy: A Discrete Choice Experiment pp. 235-246

Mehdi Najafzadeh, Sebastian Schneeweiss, Niteesh K. Choudhry, Jerry Avorn and Joshua J. Gagne

How Do Members of the Duchenne and Becker Muscular Dystrophy Community Perceive a Discrete-Choice Experiment Incorporating Uncertain Treatment Benefit? An Application of Research as an Event pp. 247-257

John F. P. Bridges, Jui-Hua Tsai, Ellen Janssen, Norah L. Crossnohere, Ryan Fischer and Holly Peay

Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs pp. 259-265

Annie Madden, Max Hopwood, Joanne Neale and Carla Treloar

Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement pp. 267-276

Traci M. Kazmerski, Elizabeth Miller, Gregory S. Sawicki, Phaedra Thomas, Olga Prushinskaya, Eliza Nelson, Kelsey Hill, Anna Miller and S. Jean Emans

Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project pp. 277-280

Elisabeth M. Oehrlein, T. Rose Love, Chinenye Anyanwu, Maya L. Hanna, Jacqueline Kraska and Eleanor M. Perfetto

Volume 12, issue 1, 2019

Including Opt-Out Options in Discrete Choice Experiments: Issues to Consider pp. 1-14

Danny Campbell and Seda Erdem

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes pp. 15-55

Eve Namisango, Katherine Bristowe, Matthew J. Allsop, Fliss E. M. Murtagh, Melanie Abas, Irene J. Higginson, Julia Downing and Richard Harding

Symptoms and Impacts in Metastatic Castration-Resistant Prostate Cancer: Qualitative Findings from Patient and Physician Interviews pp. 57-67

Stefan Holmstrom, Shevani Naidoo, James Turnbull, Emily Hawryluk, Jean Paty and Robert Morlock

Video or In-Clinic Consultation? Selection of Attributes as Preparation for a Discrete Choice Experiment Among Key Stakeholders pp. 69-82

Irit Chudner, Margalit Goldfracht, Hadass Goldblatt, Anat Drach-Zahavy and Khaled Karkabi

Understanding ‘Good Health care’ from the Patient’s Perspective: Development of a Conceptual Model Using Group Concept Mapping pp. 83-95

Stacey A. McCaffrey, Emil Chiauzzi, Caroline Chan and Michael Hoole

A Conceptual Model of Angelman Syndrome and Review of Relevant Clinical Outcomes Assessments (COAs) pp. 97-112

Joseph C. Grieco, Beverly Romero, Emuella Flood, Raquel Cabo and Jeannie Visootsak

“I Was Trying to Do the Maths”: Exploring the Impact of Risk Communication in Discrete Choice Experiments pp. 113-123

Caroline Vass, Dan Rigby and Katherine Payne

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia pp. 125-136

Jan R. Oyebode, Simon Pini, Emma Ingleson, Molly Megson, Mike Horton, Linda Clare, Hareth Al-Janabi, Carol Brayne and Penny Wright

Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment pp. 137-148

Sophy Barber, Hilary Bekker, Joachim Marti, Sue Pavitt, Balvinder Khambay and David Meads

Validity of the Patient Experiences and Satisfaction with Medications (PESaM) Questionnaire pp. 149-162

Merel L. Kimman, Marlies S. Wijsenbeek, Sander M. J. van Kuijk, Kioa L. Wijnsma, Nicole C. A. J. van de Kar, Marjolein Storm, Xana Jaarsveld and Carmen D. Dirksen

Implementing a Health Confidence Tool at Time of Discharge pp. 163-165

T. Joseph Mattingly and Khang Nong

Comment on: Tools Measuring Quality of Death, Dying, and Care, Completed After Death: Systematic Review of Psychometric Properties pp. 167-167

José E. Montoya-Medina, Giordana Poletti-Jabbour, Nicole Urrunaga and Heyson A. Jiménez

Authors’ Reply to Montoya et al. Comment On: “Tools Measuring Quality of Death, Dying, and Care, Completed After Death: Systematic Review of Psychometric Properties” pp. 169-169

Nuriye Kupeli, Bridget Candy, Gabrielle Tamura-Rose, Guy Schofield, Natalie Webber, Stephanie E. Hicks, Theodore Floyd, Bella Vivat, Elizabeth L. Sampson, Patrick Stone and Trefor Aspden