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 13, issue 6, 2020

It’s Time for Shared Decision Making and Person-Centred Care pp. 643-644

Martin Härter

How the 10th ISDM Conference Got to Qualify as “Patients Included™”: Insight from Inside pp. 645-648

Mame-Awa Ndiaye, Kathy Kastner, Claire Ludwig, Jean Légaré, Thomas Mills, Marie-Pierre Gagnon and Sabrina Guay-Bélanger

Patient-Oriented Research from the ISDM 2019 Conference: A Legacy Now More Relevant Than Ever pp. 649-652

Patrick M. Archambault, Sabrina Guay-Bélanger, Véronique Gélinas, Anik Giguère, Claire Ludwig, Mame Awa Ndiaye, Kathy Kastner, Dawn Stacey, Nick Bansback, Gary Groot and France Légaré

Shared Decision Making in a Youth Mental Health Service Design and Research Project: Insights From the Pan-Canadian ACCESS Open Minds Network pp. 653-666

Chloé Guinaudie, Chantelle Mireault, Jimmy Tan, Yvonne Pelling, Sara Jalali, Ashok Malla and Srividya N. Iyer

Shared Decision Making in Surgery: A Meta-Analysis of Existing Literature pp. 667-681

Kacper Niburski, Elena Guadagno, Samira Abbasgholizadeh-Rahimi and Dan Poenaru

Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development pp. 683-697

Dena Schulman-Green, Emily Cherlin, Renee Capasso, Sarah S. Mougalian, Shiyi Wang, Cary P. Gross, Preeti S. Bajaj, Katherine Eakle, Sharmi Patel, Karin Douglas and Kerin Adelson

Best–Worst Scaling Study to Identify Complications Patients Want to Be Informed About Prior to Abdominal Aortic Aneurysm Surgery pp. 699-707

Sylvana M. L. Mik, Balou Rietveld, Annemarie Auwerda, Ron Balm and Dirk T. Ubbink

Using Mind Mapping in Family Meetings to Support Shared Decision Making with Pediatric and Geriatric Patients pp. 709-717

Matthew L. Russell, Anne H. Carr and Kathleen Kieran

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map pp. 719-728

Karine Toupin-April, Adam M. Huber, Ciarán M. Duffy, Laurie Proulx, Esi M. Morgan, Janice S. Cohen, Isabelle Gaboury, Linda C. Li, Peter Tugwell and Jennifer Stinson

Adapting two American Decision Aids for Mild Traumatic Brain Injury to the Canadian Context Using the Nominal Group Technique pp. 729-743

El Kebir Ghandour, Lania Lelaidier Hould, Félix-Antoine Fortier, Veronique Gélinas, Edward R. Melnick, Erik P. Hess, Eddy S. Lang, Jocelyn Gravel, Jeffrey J. Perry, Natalie Le Sage, Catherine Truchon, Annie LeBlanc, Alexander Sasha Dubrovsky, Marie-Pierre Gagnon, Marie-Christine Ouellet, Isabelle Gagnon, Suzanne McKenna, France Légaré, Louise Sauvé, Tom H. van de Belt, Éric Kavanagh, Laurence Paquette, Anne-Catherine Verrette, Patrick Plante, Richard J. Riopelle and Patrick M. Archambault

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids pp. 745-756

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

High Users of Healthcare Services: Development and Alpha Testing of a Patient Decision Aid for Case Management pp. 757-766

Marie-Eve Poitras, France Légaré, Vanessa Tremblay Vaillancourt, Isabelle Godbout, Annie Poirier, Karina Prévost, Claude Spence, Maud-Christine Chouinard, Hervé Tchala Vignon Zomahoun, Lobna Khadhraoui, José Massougbodji, Mathieu Bujold, Pierre Pluye and Catherine Hudon

Eliciting What Matters Most to People: The Whiteboard Initiative Proof of Concept pp. 767-768

Kathy Kastner

Volume 13, issue 5, 2020

Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review pp. 471-519

Danielle B. Rice, Andrea Carboni-Jiménez, Mara Cañedo-Ayala, Kimberly A. Turner, Matthew Chiovitti, Alexander W. Levis and Brett D. Thombs

Quantitative Preferences for Lung Cancer Treatment from the Patients’ Perspective: A Systematic Review pp. 521-536

Yasuo Sugitani, Naoko Sugitani and Shunsuke Ono

Mapping the Chinese Version of the EORTC QLQ-BR53 Onto the EQ-5D-5L and SF-6D Utility Scores pp. 537-555

Tong Liu, Shunping Li, Min Wang, Qiang Sun and Gang Chen

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. 557-566

Laura Panattoni, Charles E. Phelps, Tracy A. Lieu, Stacey Alexeeff, Suzanne O’Neill, Jeanne S. Mandelblatt and Scott D. Ramsey

The Successful Return-To-Work Questionnaire for Cancer Survivors (I-RTW_CS): Development, Validity and Reproducibility pp. 567-582

Michiel A. Greidanus, Angela G. E. M. Boer, Angelique E. Rijk, Sonja Brouwers, Theo M. Reijke, Marie José Kersten, Jean H. G. Klinkenbijl, Roy I. Lalisang, Robert Lindeboom, Patricia J. Zondervan, Monique H. W. Frings-Dresen and Sietske J. Tamminga

The Impact of Reproductive Issues on Preferences of Women with Relapsing Multiple Sclerosis for Disease-Modifying Treatments pp. 583-597

Edward J. D. Webb, David Meads, Ieva Eskytė, Helen L. Ford, Hilary L. Bekker, Jeremy Chataway, George Pepper, Joachim Marti, Yasmina Okan, Sue H. Pavitt, Klaus Schmierer and Ana Manzano

Outcome-Based Payment Schemes: What Outcomes Do Patients with Cancer Value? pp. 599-610

Paula Lorgelly, Jack Pollard, Patricia Cubi-Molla, Amanda Cole, Duncan Sim and Jon Sussex

Stakeholder-Engaged Derivation of Patient-Informed Value Elements pp. 611-621

Susan dosReis, Beverly Butler, Juan Caicedo, Annie Kennedy, Yoon Duk Hong, Chengchen Zhang and Julia F. Slejko

Real World Survey of Patient Engagement Status in Clinical Research: The First Input from Japan pp. 623-632

Nanae Tanemura, Tsuyoshi Sasaki, Junko Sato and Hisashi Urushihara

Beliefs and Values About Gene Therapy and In-Utero Gene Editing in Patients with Hemophilia and Their Relatives pp. 633-642

Tania C. Vasquez-Loarte, Tiffany Lin Lucas, Julie Harris-Wai and Deborah J. Bowen

Volume 13, issue 4, 2020

“The Whole Game is Changing and You’ve Got Hope”: Australian Perspectives on Treatment Decision Making in Spinal Muscular Atrophy pp. 389-400

Michelle A. Farrar, Kate A. Carey, Sarah-Grace Paguinto, Nadine A. Kasparian and Richard Abreu Lourenço

Are Videos or Text Better for Describing Attributes in Stated-Preference Surveys? pp. 401-408

Stephanie L. Lim, Jui-Chen Yang, Jessie Ehrisman, Laura J. Havrilesky and Shelby D. Reed

Qualitative Thematic Analysis of Social Media Data to Assess Perceptions of Route of Administration for Antiretroviral Treatment among People Living with HIV pp. 409-422

Louis S. Matza, Trena M. Paulus, Cindy P. Garris, Nicolas Velde, Vasiliki Chounta and Kristen A. Deger

Understanding Symptoms in RYR1-Related Myopathies: A Mixed-Methods Analysis Based on Participants’ Experience pp. 423-434

Carlos Capella-Peris, Mary M. Cosgrove, Irene C. Chrismer, M. Sonia Razaqyar, Jeffrey S. Elliott, Anna Kuo, Magalie Emile-Backer and Katherine G. Meilleur

Agreement Among Paper and Electronic Modes of the EQ-5D-5L pp. 435-443

J. Jason Lundy, Stephen Joel Coons, Emuella Flood and Mira J. Patel

Heterogeneity in Preferences for Anti-coagulant Use in Atrial Fibrillation: A Latent Class Analysis pp. 445-455

Janine Til, Catharina Oudshoorn-Groothuis, Marieke Weernink and Clemens Birgelen

Patient Experiences with Avelumab in Treatment-Naïve Metastatic Merkel Cell Carcinoma: Longitudinal Qualitative Interview Findings from JAVELIN Merkel 200, a Registrational Clinical Trial pp. 457-467

Jérémy Lambert, Alexia Marrel, Sandra P. D’Angelo, Melissa A. Burgess, Bartosz Chmielowski, Nicola Fazio, Thilo Gambichler, Jean-Jacques Grob, Céleste Lebbé, Caroline Robert, Jeffrey Russell, Gülseren Güzel and Murtuza Bharmal

Correction to: Patient-Reported Outcomes in an Observational Cohort of HIV-1-Infected Adults on Darunavir/Cobicistat-Based Regimens: Beyond Viral Suppression pp. 469-470

Andrea Antinori, Maria V. Cossu, Barbara Menzaghi, Gaetana Sterrantino, Nicola Squillace, Valentina Di Cristo, Annamaria Cattelan, Emanuele Focà, Antonella Castagna, Giancarlo Orofino, Daniela Valenti, Gabriella D’Ettore, Lucia Aprea, Sergio Ferrara, Maria E. Locatelli, Giordano Madeddu, Emanuele Pontali, Paolo Scerbo, Barbara Rossetti, Alessia Uglietti, Roberta Termini, Francesco Rucci, Andrea Gori and Daniela Mancusi

Volume 13, issue 3, 2020

Our Most Powerful Weapon to Fight COVID-19: Patient Involvement pp. 255-255

Peter J. Pitts

A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People pp. 257-288

Samantha Husbands, Paul Mark Mitchell and Joanna Coast

Development and Psychometric Evaluation of the Life Interference Questionnaire for Growth Hormone Deficiency (LIQ-GHD) to Assess Growth Hormone Injection Burden in Children and Adults pp. 289-306

Diane M. Turner-Bowker, Andrew Yaworsky, Andrew Palladino, Roger E. Lamoureux, Masami Kelly, Emily Love, Andreas M. Pleil, Alan Shields and Jane Loftus

Empirical Investigation of Ranking vs Best–Worst Scaling Generated Preferences for Attributes of Quality of Life: One and the Same or Differentiable? pp. 307-315

Julie Ratcliffe, Billingsley Kaambwa, Claire Hutchinson and Emily Lancsar

A Qualitative Research for Defining Meaningful Attributes for the Treatment of Inflammatory Bowel Disease from the Patient Perspective pp. 317-325

Edouard Louis, Juan M. Ramos-Goñi, Jesus Cuervo, Uri Kopylov, Manuel Barreiro- de Acosta, Sara McCartney, Greg Rosenfeld, Dominik Bettenworth, Ailsa Hart, Kerri Novak, Xavier Donnet, David Easton, Roberto Saldaña, Katja Protze, Eyal Tzur, Gabriela Alperovich and Francesc Casellas

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness pp. 327-337

Shane Sinclair, Priya Jaggi, Thomas F. Hack, Lara Russell, Susan E. McClement, Lena Cuthbertson, Lucy E. Selman and Carlo Leget

Population Preferences for Treatments When Critically Ill: A Discrete Choice Experiment pp. 339-346

Matthew H. Anstey, Imogen A. Mitchell, Charlie Corke and Richard Norman

Finding Out What Matters in Decision-Making Related to Genomics and Personalized Medicine in Pediatric Oncology: Developing Attributes to Include in a Discrete Choice Experiment pp. 347-361

Maria C. McCarthy, Richard De Abreu Lourenco, Laura J. McMillan, Elena Meshcheriakova, Alice Cao and Lynn Gillam

The Economic Impact on Australian Patients with Neuroendocrine Tumours pp. 363-373

Louisa G. Gordon, Thomas M. Elliott, Kate Wakelin, Simone Leyden, John Leyden, Michael Michael, Nick Pavlakis, Jan Mumford, Eva Segelov and David K. Wyld

Patient-Reported Outcomes in an Observational Cohort of HIV-1-Infected Adults on Darunavir/Cobicistat-Based Regimens: Beyond Viral Suppression pp. 375-387

Andrea Antinori, Maria V. Cossu, Barbara Menzaghi, Gaetana Sterrantino, Nicola Squillace, Valentina Di Cristo, Annamaria Cattelan, Emanuele Focà, Antonella Castagna, Giancarlo Orofino, Daniela Valenti, Gabriella D’Ettore, Lucia Aprea, Sergio Ferrara, Maria E. Locatelli, Giordano Madeddu, Emanuele Pontali, Paolo Scerbo, Barbara Rossetti, Alessia Uglietti, Roberta Termini, Francesco Rucci, Andrea Gori and Daniela Mancusi

Volume 13, issue 2, 2020

Use of Patient Preference Studies in HTA Decision Making: A NICE Perspective pp. 145-149

Jacoline C. Bouvy, Luke Cowie, Rosemary Lovett, Deborah Morrison, Heidi Livingstone and Nick Crabb

Assessing the Patient Experience of Hypoparathyroidism Symptoms: Development of the Hypoparathyroidism Patient Experience Scale-Symptom (HPES-Symptom) pp. 151-162

Meryl Brod, Laura Tesler Waldman, Alden Smith and David Karpf

A Picture is Worth a Thousand Words: The Role of Survey Training Materials in Stated-Preference Studies pp. 163-173

Caroline Vass, Niall J. Davison, Geert Stichele and Katherine Payne

Using Animation to Self-Report Health: A Randomized Experiment with Children pp. 175-188

Carla Guerriero, Neus Abrines Jaume, Karla Diaz-Ordaz, Katherine Loraine Brown, Jo Wray, Joan Ashworth, Matt Abbiss and John Cairns

“Lower abdominal pains, as if I was being squeezed…in a clamp”: A Qualitative Analysis of Symptoms, Patient-Perceived Side Effects and Impacts of Ovarian Cancer pp. 189-200

Mona L. Martin, Katarina Halling, Daniel Eek and Matthew Reaney

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study pp. 201-210

Erna C. Balen, Marjolein L. Wesselo, Bridget L. Baker, Marjan J. Westerman, Michiel Coppens, Cees Smit, Mariëtte H. E. Driessens, Frank W. G. Leebeek, Johanna G. Bom and Samantha C. Gouw

A Hierarchical Bayes Approach to Modeling Heterogeneity in Discrete Choice Experiments: An Application to Public Preferences for Prenatal Screening pp. 211-223

Tima Mohammadi, Wei Zhang, Julie Sou, Sylvie Langlois, Sarah Munro and Aslam H. Anis

Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives pp. 225-234

Suz Jack Chan, Lisa K. Stamp, Nicola Liebergreen, Henry Ndukwe, Carlo Marra and Gareth J. Treharne

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold pp. 235-250

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

Involving People with Learning Disabilities in Guideline Development pp. 251-254

Justine Karpusheff, Charlotte Haynes, Fiona Glen and Gillian Leng

Volume 13, issue 1, 2020

The Patient Perspective: A Matter of Minutes pp. 1-6

Rocco Falchetto

Patient Preferences in the Medical Product Lifecycle pp. 7-10

Jennifer A. Whitty, Esther W. Bekker-Grob, Nigel S. Cook, Fern Terris-Prestholt, Michael Drummond, Rocco Falchetto and Hans L. Hillege

Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development pp. 11-21

Dmitry Khodyakov, Sean Grant, Brian Denger, Kathi Kinnett, Ann Martin, Holly Peay and Ian Coulter

The Shared Decision-Making Process in the Pharmacological Management of Depression pp. 23-30

Malcom Hopwood

Opening the ‘Black Box’: An Overview of Methods to Investigate the Decision-Making Process in Choice-Based Surveys pp. 31-41

Dan Rigby, Caroline Vass and Katherine Payne

Motivational Interviewing as a Strategy to Impact Outcomes in Heart Failure Patients: A Systematic Review pp. 43-55

Nabin Poudel, Jan Kavookjian and Michael J. Scalese

Patient Decision Aid (PDA) for Patients with Rheumatoid Arthritis Reduces Decisional Conflict and Improves Readiness for Treatment Decision Making pp. 57-69

José Luis Pablos, Juan Angel Jover, José Andrés Roman-Ivorra, José Inciarte-Mundo, Tatiana Dilla, José Antonio Sacristan, Marta Comellas and Luís Lizán

African Americans Want a Focus on Shared Decision-Making in Asthma Adherence Interventions pp. 71-81

Maureen George, Adriana Arcia, Annie Chung, Danielle Coleman and Jean-Marie Bruzzese

Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers pp. 83-102

Rebecca Crawford, Kate Sully, Rebecca Conroy, Chloe Johnson, Lynda Doward, Timothy Bell, Verna Welch, Francois Peloquin and Adam Gater

COPD-Specific Self-Management Support Provided by Trained Educators in Everyday Practice is Associated with Improved Quality of Life, Health-Directed Behaviors, and Skill and Technique Acquisition: A Convergent Embedded Mixed-Methods Study pp. 103-119

Myriam Gagné, Sophie Lauzier, Justine Babineau-Therrien, Christine Hamel, Sara-Edith Penney, Jean Bourbeau, Jocelyne Moisan and Louis-Philippe Boulet

Reporting Formative Qualitative Research to Support the Development of Quantitative Preference Study Protocols and Corresponding Survey Instruments: Guidelines for Authors and Reviewers pp. 121-136

Ilene L. Hollin, Benjamin M. Craig, Joanna Coast, Kathleen Beusterien, Caroline Vass, Rachael DiSantostefano and Holly Peay

11TH MEETING OF THE INTERNATIONAL ACADEMY OF HEALTH PREFERENCE RESEARCH pp. 137-143

Emily Lancsar