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The Patient: Patient-Centered Outcomes Research

2008 - 2021

Current editor(s): Christopher I. Carswell

From:
Springer
International Academy of Health Preference Research
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Volume 14, issue 1, 2021

Giving a Voice to Marginalised Groups for Health Care Decision Making pp. 5-10 Downloads
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 Downloads
Matthew Reaney, Jennifer Cline, James C. Wilson and Michael Posey
Respondent Understanding in Discrete Choice Experiments: A Scoping Review pp. 17-53 Downloads
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 Downloads
Caroline M. 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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
Mina Bahrampour, Richard Norman, Joshua Byrnes, Martin Downes and Paul A. 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 Downloads
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 Downloads
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 Downloads
Edouard Kujawski
Patient Feedback on Research Studies: How to Interpret Feedback from the ‘Aware’ Patient? pp. 147-148 Downloads
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 Downloads
Norah L. Crossnohere, Sarah Janse, Ellen Janssen and John F. P. Bridges

Volume 13, issue 6, 2020

It’s Time for Shared Decision Making and Person-Centred Care pp. 643-644 Downloads
Martin Härter
How the 10th ISDM Conference Got to Qualify as “Patients Included™”: Insight from Inside pp. 645-648 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
Caroline M. Vass, Niall J. Davison, Geert Stichele and Katherine Payne
Using Animation to Self-Report Health: A Randomized Experiment with Children pp. 175-188 Downloads
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 Downloads
Mona L. Martin, Katarina Halling, Daniel Eek and Matthew Reaney
Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study pp. 201-210 Downloads
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 Downloads
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 Downloads
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 Downloads
Patricia Halstead, Rob Arbuckle, Chris Marshall, Brenda Zimmerman, Kate Bolton and Cathy Gelotte
Involving People with Learning Disabilities in Guideline Development pp. 251-254 Downloads
Justine Karpusheff, Charlotte Haynes, Fiona Glen and Gillian Leng

Volume 13, issue 1, 2020

The Patient Perspective: A Matter of Minutes pp. 1-6 Downloads
Rocco Falchetto
Patient Preferences in the Medical Product Lifecycle pp. 7-10 Downloads
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 Downloads
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 Downloads
Malcom Hopwood
Opening the ‘Black Box’: An Overview of Methods to Investigate the Decision-Making Process in Choice-Based Surveys pp. 31-41 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
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 Downloads
Emily Lancsar
Page updated 2021-01-18