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Content
May 2023, Volume 16, Issue 3
- 179-181 The Pogo-ization of Post-Pandemic Vaccine Policy
by Peter J. Pitts - 183-199 So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience
by Paul Wicks & Lindsey Wahlstrom-Edwards & Sam Fillingham & Andrea Downing & Elin Haf Davies - 201-221 Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs)
by Tessa Peasgood & Julia M. Caruana & Clara Mukuria - 223-237 The Impact of Video-Based Educational Materials with Voiceovers on Preferences for Glucose Monitoring Technology in Patients with Diabetes: A Randomised Study
by Ian P. Smith & Chiara L. Whichello & Esther W. Bekker-Grob & Maureen P. M. H. Rutten-van Mölken & Jorien Veldwijk & G. Ardine Wit - 239-253 Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment
by Vikas Soekhai & Bas Donkers & Jennifer Viberg Johansson & Cecilia Jimenez-Moreno & Cathy Anne Pinto & G. Ardine Wit & Esther Bekker-Grob - 255-264 Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study
by Christine Bennink & Marleen Mul & Marjolein Klift & Annemiek Broijl & Lidwine Tick & Eva Jongh & Mirjam Garvelink & Dorien Lobbezoo & Pieter Sonneveld & Jan Hazelzet - 265-276 Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs)
by Emily Elstad & Fraser D. Bocell & Tamika Cowans Owens & Dilani Logan & Emily Melluso & Claire Viscione & San Keller & Allen Chen & Jessica Weinberg & Veronica Sansing-Foster & Leah Royce & Phillip Woods & Andrew I. Steen & Adriana Ineveld & Michelle Reardon & Allen Cowley & John Kusiak & Deanne Clare & Terrie Cowley & Michelle E. Tarver - 277-285 Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study
by Nicole Bouranis & Sherril Gelmon & Allison Lindauer - 287-287 Correction to: How Does the Public Evaluate Vaccines for Low‑Incidence, Severe‑Outcome Diseases? A General‑Population Choice Experiment
by F. Reed Johnson & Angelyn Fairchild & Dale Whittington & Amit K. Srivastava & Juan Marcos Gonzalez & Liping Huang
March 2023, Volume 16, Issue 2
- 89-93 Rethinking Patient Engagement in Cancer Research
by Anne L. R. Schuster & Heather Hampel & Electra D. Paskett & John F. P. Bridges - 95-103 Long-Term Improvement in the Patient-Reported Outcomes of Rectal Bleeding, Stool Frequency, and Health-Related Quality of Life with Tofacitinib in the Ulcerative Colitis OCTAVE Clinical Program
by David P. Hudesman & Joana Torres & Leonardo Salese & John C. Woolcott & Rajiv Mundayat & Chinyu Su & Mahmoud H. Mosli & Jessica R. Allegretti - 105-116 Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases
by Keri Vartanian & Daniel Fish & Benjamin Gronowski & Natalie Kenton & Ari Robicsek - 117-125 The Perception of Women in Rural and Remote Scotland About Intrapartum Care: A Qualitative Study
by Verity Watson & Helen Bryers & Nicolas Krucien & Seda Erdem & Mary Burnside & Hugo C. Woerden - 127-138 Patients’ Preferences for Connected Insulin Pens: A Discrete Choice Experiment Among Patients with Type 1 and Type 2 Diabetes
by Jaein Seo & Sebastian Heidenreich & Esraa Aldalooj & Jiat Ling Poon & Erik Spaepen & Elizabeth L. Eby & Rachel S. Newson - 139-151 How Does the Public Evaluate Vaccines for Low-Incidence, Severe-Outcome Diseases? A General-Population Choice Experiment
by F. Reed Johnson & Angelyn Fairchild & Dale Whittington & Amit K. Srivastava & Juan Marcos Gonzalez & Liping Huang - 153-164 Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe
by Damon Willems & Eva-Lotta Hinzpeter & Hessel H. Zee & Christopher J. Sayed & John R. Ingram & Charlotte Beaudart & Silvia M. A. A. Evers & Mickael Hiligsmann - 165-177 Patient Preferences for Attributes that Characterise Alternative Models of Care in Gastroenterology: A Discrete Choice Experiment
by Rumbidzai N. Mutsekwa & Katrina L. Campbell & Russell Canavan & Brendan Mulhern & Rebecca L. Angus & Joshua M. Byrnes
January 2023, Volume 16, Issue 1
- 3-5 FDA Guidance on Selecting, Developing, or Modifying Fit-for-Purpose Clinical Outcome Assessments: Old Wine in a New Bottle?
by Ari Gnanasakthy & Shanshan Qin & Lindsey Norcross - 7-17 Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments
by Elena Nicod & Andrew J Lloyd & Thomas Morel & Michela Meregaglia & Sheela Upadhyaya & Amanda Whittal & Karen Facey & Michael Drummond - 19-29 Conducting Patient-Oriented Research in Low-Income and Middle-Income Countries: A Scoping Review
by Bukola Mary Ibitoye & Bernie Garrett & Manon Ranger & Jennifer Stinson - 31-42 What Author Instructions Do Health Journals Provide for Writing Plain Language Summaries? A Scoping Review
by Karen M. Gainey & Jenna Smith & Kirsten J. McCaffery & Sharon Clifford & Danielle M. Muscat - 43-56 Patient Preferences for Multi-Cancer Early Detection (MCED) Screening Tests
by Heather Gelhorn & Melissa M. Ross & Anuraag R. Kansal & Eric T. Fung & Michael V. Seiden & Nicolas Krucien & Karen C. Chung - 57-66 Preferences for Treatments for Major Depressive Disorder: Formative Qualitative Research Using the Patient Experience
by Susan dosReis & Laura M. Bozzi & Beverly Butler & Richard Z. Xie & Richard H. Chapman & Jennifer Bright & Erica Malik & Julia F. Slejko - 67-76 Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research
by Erin G. Roth & Justin Kim & Julia F. Slejko & C. Daniel Mullins & Jennifer L. Doyle & David L. Levitt & Miguel Melendez & Kyle J. Fletke & Yinin Hu - 77-88 Student-Athlete Preferences for Sexual Violence Reporting: A Discrete Choice Experiment
by Alice M. Ellyson & Avanti Adhia & Emily Kroshus & Davene R. Wright
November 2022, Volume 15, Issue 6
- 611-613 Regulating Between the Notes: The US FDA and the Evolution of the Patient Voice Through Twenty-First Century Regulatory Science
by Peter J. Pitts - 615-617 Increasing the Patient-Centeredness of Predictive Analytics Tools
by Norah L. Crossnohere & Janet E. Childerhose & Seuli Bose-Brill - 619-627 Patient-Centered Core Impact Sets: What They are and Why We Need Them
by Eleanor M. Perfetto & Elisabeth M. Oehrlein & T. Rosie Love & Silke Schoch & Annie Kennedy & Jennifer Bright - 629-639 Methods to Summarize Discrete-Choice Experiments in a Systematic Review: A Scoping Review
by Daksh Choudhary & Megan Thomas & Kevin Pacheco-Barrios & Yuan Zhang & Pablo Alonso-Coello & Holger Schünemann & Glen Hazlewood - 641-654 The Impact of Patient Support Programs in Europe: A Systematic Literature Review
by José Antonio Sacristán & Esther Artime & Silvia Díaz-Cerezo & Marta Comellas & Lucía Pérez-Carbonell & Luis Lizán - 655-656 Concerns about the Responsiveness of Generic Measures and the Search for a “Minimally” Important Change: Today’s PRO Red Herrings
by David Cella - 657-668 Meaningful Improvement in General Health Outcomes with Guselkumab Treatment for Psoriatic Arthritis: Patient-Reported Outcomes Measurement Information System-29 Results from a Phase 3 Study
by Ana-Maria Orbai & Laura C. Coates & Atul Deodhar & Philip S. Helliwell & Christopher T. Ritchlin & Evan Leibowitz & Alexa P. Kollmeier & Elizabeth C. Hsia & Xie L. Xu & Shihong Sheng & Yusang Jiang & Yan Liu & Chenglong Han - 669-678 What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals
by Philip A. Powell & Donna Rowen - 679-690 Patient Medication Preferences for Managing Dry Eye Disease: The Importance of Medication Side Effects
by Semra Ozdemir & Sharon Wan Jie Yeo & Jia Jia Lee & Adithya Bhaskar & Eric Finkelstein & Louis Tong - 691-702 Interpreting Within-Patient Changes on the EORTC QLQ-C30 and EORTC QLQ-LC13
by Cheryl D. Coon & Michael Schlichting & Xinke Zhang - 703-713 Development of an Item Bank to Assess Patient-Reported Outcomes: Signs, Symptoms, and Impacts of COVID-19
by Matthew Reaney & James Turnbull & Jean Paty & Karli Heuer & Chad Gwaltney - 715-728 Opportunities to Improve Long COVID Care: Implications from Semi-structured Interviews with Black Patients
by Rachel S. Bergmans & Keiyana Chambers-Peeple & Deena Aboul-Hassan & Samantha Dell’Imperio & Allie Martin & Riley Wegryn-Jones & Lillian Z. Xiao & Christine Yu & David A. Williams & Daniel J. Clauw & Melissa DeJonckheere
September 2022, Volume 15, Issue 5
- 509-512 Towards Accurate Prediction of Healthcare Choices: The INTERSOCIAL Project
by Esther W. Bekker-Grob & Bas Donkers & Michiel Bliemer & Joanna Coast & Joffre Swait - 513-520 Improvements to Survey Design from Pilot Testing a Discrete-Choice Experiment of the Preferences of Persons Living with HIV for Long-Acting Antiretroviral Therapies
by Douglas Barthold & Aaron T. Brah & Susan M. Graham & Jane M. Simoni & Brett Hauber - 521-535 Exploring the Comparability of Face-to-Face Versus Video Conference-Based Composite Time Trade-Off Interviews: Insights from EQ-5D-Y-3L Valuation Studies in Belgium and Spain
by Anabel Estévez-Carrillo & Sarah Dewilde & Mark Oppe & Juan M. Ramos-Goñi - 537-550 Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment
by Bryanne L. Kennedy & Gillian R. Currie & Ania Kania-Richmond & Carolyn A. Emery & Gail MacKean & Deborah A. Marshall - 551-564 The Patient Voice: Exploring Treatment Preferences in Participants with Mild Cognitive Concerns to Inform Regulatory Decision Making
by Carol Mansfield & Kristin Bullok & Jillian Venci Fuhs & Antje Tockhorn-Heidenreich & J. Scott Andrews & Dana DiBenedetti & Brandy R. Matthews & Joshua C. Darling & Jessie Sutphin & Brett Hauber - 565-576 Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID
by Sarah Ziegler & Alessia Raineri & Vasileios Nittas & Natalie Rangelov & Fabian Vollrath & Chantal Britt & Milo A. Puhan - 577-588 A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy
by Norah L. Crossnohere & Ryan Fischer & Elizabeth Vroom & Patricia Furlong & John F. P. Bridges - 589-598 Determinants of Health Preferences Using Data from the Egyptian EQ-5D-5L Valuation Study
by Sahar Al Shabasy & Fatima Al Sayah & Maggie Abbassi & Samar Farid - 599-609 Perspectives of Pediatric Rheumatologists on Initiating and Tapering Biologics in Patients with Juvenile Idiopathic Arthritis: A Formative Qualitative Study
by Gillian R. Currie & Tram Pham & Marinka Twilt & Maarten J. IJzerman & Pauline M. Hull & Michelle M. A. Kip & Susanne M. Benseler & Glen S. Hazlewood & Rae S. M. Yeung & Nico M. Wulffraat & Joost F. Swart & Sebastian J. Vastert & Deborah A. Marshall
July 2022, Volume 15, Issue 4
- 383-387 Patient-Reported Chronic Pain Intensity: More Than Meets the Eye
by Dale J. Langford & Jennifer S. Gewandter & Dagmar Amtmann & Bryce B. Reeve & Sharon Hertz & John D. Loeser & Christin Veasley & Dennis C. Turk & Robert H. Dworkin - 389-397 Time to See the Difference: Video Capture for Patient-Centered Clinical Trials
by Elin Haf Davies & Clare Matthews & Adeline Merlet & Martine Zimmermann - 399-421 What is the Most Valid and Reliable Compassion Measure in Healthcare? An Updated Comprehensive and Critical Review
by Shane Sinclair & Jane Kondejewski & Thomas F. Hack & Harrison C. D. Boss & Cara C. MacInnis - 423-434 The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review
by Megan Thomas & Deborah A. Marshall & Daksh Choudhary & Susan J. Bartlett & Adalberto Loyola Sanchez & Glen S. Hazlewood - 435-444 Patient-Reported Outcome Measures Used for Assessing Breast Sensation after Mastectomy: Not Fit for Purpose
by Hansje P. Smeele & Rachel C. H. Dijkstra & Merel L. Kimman & René R. W. J. Hulst & Stefania M. H. Tuinder - 445-457 Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses
by Sabina Sanghera & Axel Walther & Tim J. Peters & Joanna Coast - 459-472 How Do People with Experience of Infertility Value Different Aspects of Assistive Reproductive Therapy? Results from a Multi-Country Discrete Choice Experiment
by Chris Skedgel & Eleanor Ralphs & Elaine Finn & Marie Markert & Carl Samuelsen & Jennifer A. Whitty - 473-483 Will the Public Engage with New Pharmacy Roles? Assessing Future Uptake of a Community Pharmacy Health Check Using a Discrete Choice Experiment
by Gin Nie Chua & Christine Bond & Terry Porteous & Mandy Ryan - 485-496 Patient and Public Preferences for Coordinated Care in Switzerland: Development of a Discrete Choice Experiment
by Anna Nicolet & Clémence Perraudin & Joël Wagner & Ingrid Gilles & Nicolas Krucien & Isabelle Peytremann-Bridevaux & Joachim Marti - 497-507 Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment
by Colene Bentley & Sara Izadi-Najafabadi & Adam Raymakers & Helen McTaggart-Cowan
May 2022, Volume 15, Issue 3
- 269-285 Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review
by Rebekah Hall & Antonieta Medina-Lara & Willie Hamilton & Anne E. Spencer - 287-306 Stated Preference Research in Reproductive and Maternal Healthcare Services in Sub-Saharan Africa: A Systematic Review
by Daniel Erku & Paul Scuffham & Katrina Gething & Richard Norman & Alemayehu B. Mekonnen & Gebremedhin B. Gebretekle & Yibeltal Assefa & Gizachew A. Tessema - 307-316 The Importance of Disease-Free Survival as a Clinical Trial Endpoint: A Qualitative Study Among Canadian Survivors of Lung Cancer
by Andrea Bever & Jackie Manthorne & Tissa Rahim & Layla Moumin & Shelagh M. Szabo - 317-328 Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development
by Hadley Stevens Smith & Stephanie R. Morain & Jill Oliver Robinson & Isabel Canfield & Janet Malek & Caryn Kseniya Rubanovich & Cinnamon S. Bloss & Sara L. Ackerman & Barbara Biesecker & Kyle B. Brothers & Crispin N. Goytia & Carol R. Horowitz & Sara J. Knight & Barbara Koenig & Stephanie A. Kraft & Simon Outram & Christine Rini & Kelly J. Shipman & Margaret Waltz & Benjamin Wilfond & Amy L. McGuire - 329-339 A Guide to Observable Differences in Stated Preference Evidence
by Benjamin Matthew Craig & Esther W. Bekker-Grob & Juan Marcos González Sepúlveda & William H. Greene - 341-351 A Standard Set of Value-Based Patient-Centered Outcomes and Measures of Overall Health in Adults
by Jaheeda Gangannagaripalli & Andrea Albagli & Stacie N. Myers & Sarah Whittaker & Andria Joseph & Anna Clarke & Lucy Matkin & Jordi Alonso & Ira Byock & Michael den Berg & Carolyn Canfield & John Chaplin & Juan Dapueto & Marcelo Pio Almedia Fleck & Chris Sidey-Gibbons & Jan Hazelzet & Rachel Hess & Kaisa Immonen & Serena Joyner & Catherine Katz & Carolyn Kerrigan & Cindy Lam & Joanne Lunn & Fiona McKenzie & Alastair Roeves & Caleb Stowell & Timothy Switaj & Melissa Tinsley & Eyal Zimlichman & Jose M. Valderas - 353-365 Women’s Willingness to Accept Risks of Medication for Inflammatory Bowel Disease During Pregnancy
by Tatyana Kushner & Angelyn Fairchild & F. Reed Johnson & Bruce E. Sands & Uma Mahadevan & Sreedhar Subramanian & Ashwin Ananthakrishnan & Christina Ha & Meenakshi Bewtra - 367-377 Exit Interviews Examining the Patient Experience in Clinical Trials of Tirzepatide for Treatment of Type 2 Diabetes
by Louis S. Matza & Katie D. Stewart & Laura Fernández Landó & Hiren Patel & Kristina S. Boye - 379-381 Correction to: Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review
by Rebekah Hall & Antonieta Medina-Lara & Willie Hamilton & Anne E. Spencer
March 2022, Volume 15, Issue 2
- 147-149 Patient Experience Data for Medical Product Development: Opportunity Beyond Obligation
by Robyn T. Carson - 151-155 Unexpected Outcomes of Measuring Decision Regret: Using a Breast Cancer Decision-Making Case Example
by Kelly Oman & Marie-Anne Durand & Glyn Elwyn & Renata West Yen & Christine Marx & Mary C. Politi - 157-169 Women’s Experiences of and Perspectives on Transvaginal Mesh Surgery for Stress Urine Incontinency and Pelvic Organ Prolapse: A Qualitative Systematic Review
by Mina Motamedi & Stacy M. Carter & Chris Degeling - 171-185 Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey
by Andrea J. Chow & Michael Pugliese & Laure A. Tessier & Pranesh Chakraborty & Ryan Iverson & Doug Coyle & Jonathan B. Kronick & Kumanan Wilson & Robin Hayeems & Walla Al-Hertani & Michal Inbar-Feigenberg & Shailly Jain-Ghai & Anne-Marie Laberge & Julian Little & John J. Mitchell & Chitra Prasad & Komudi Siriwardena & Rebecca Sparkes & Kathy N. Speechley & Sylvia Stockler & Yannis Trakadis & Jagdeep S. Walia & Brenda J. Wilson & Beth K. Potter - 187-196 Preference Paths and Their Kaizen Tasks for Small Samples
by Benjamin Matthew Craig & Kim Rand & John D. Hartman - 197-206 Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptability Study
by Suzanne McDonald & Samuel X. Tan & Shamima Banu & Mieke Driel & James M. McGree & Geoffrey Mitchell & Jane Nikles - 207-218 Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study
by Damon Willems & Mickael Hiligsmann & Hessel H van der Zee & Christopher J Sayed & Silvia M A A Evers - 219-232 Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Discrete Choice Experiment
by Glory Apantaku & Magda Aguiar & K. Julia Kaal & Patrick J. McDonald & Mary B. Connolly & Viorica Hrincu & Judy Illes & Mark Harrison - 233-243 Adaptation of a Shared Decision-Making Tool for Early Rheumatoid Arthritis Treatment Decisions with Indigenous Patients
by Valerie Umaefulam & Terri-Lynn Fox & Glen Hazlewood & Nick Bansback & Claire E. H. Barber & Cheryl Barnabe - 245-253 Preferences and Experiences Regarding the Use of the Self-Sampling Device in hrHPV Screening for Cervical Cancer
by Marjolein Dieleman & Jolien Waard & G. Bea A. Wisman & Ed Schuuring & Martha D. Esajas & Karin M. Vermeulen & Geertruida H. Bock - 255-266 Comparing Patient Preferences for Antithrombotic Treatment During the Acute and Chronic Phases of Myocardial Infarction: A Discrete-Choice Experiment
by Cathy Anne Pinto & Gin Nie Chua & John F. P. Bridges & Ella Brookes & Johanna Hyacinthe & Tommi Tervonen - 267-267 Correction to: Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A Protocol for a Feasibility and Acceptability Study
by Suzanne McDonald & Samuel X. Tan & Shamima Banu & Mieke Driel & James M. McGree & Geoffrey Mitchell & Jane Nikles
January 2022, Volume 15, Issue 1
- 3-19 Validated Tools to Measure Costs for Patients: A Systematic Review
by Thomas G. Poder & Lucien P. Coulibaly & Myriam Gaudreault & Simon Berthelot & Maude Laberge - 21-38 An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis
by Kara Schick-Makaroff & Adrienne Levay & Stephanie Thompson & Rachel Flynn & Richard Sawatzky & Onouma Thummapol & Scott Klarenbach & Mehri Karimi-Dehkordi & Joanne Greenhalgh - 39-54 A Systematic Review of Discrete Choice Experiments and Conjoint Analysis on Genetic Testing
by Semra Ozdemir & Jia Jia Lee & Isha Chaudhry & Remee Rose Quintana Ocampo - 55-68 A Systematic and Critical Review of Discrete Choice Experiments in Asthma and Chronic Obstructive Pulmonary Disease
by Hannah Collacott & Dian Zhang & Sebastian Heidenreich & Tommi Tervonen - 69-75 Evaluating the Consistency of Patient Preference Estimates: Systematic Variation in Survival—Adverse Event Trade-Offs in Patients with Cancer or Cardiovascular Disease
by Kevin Marsh & Nicolas Krucien - 77-92 Identifying New Zealand Public Preferences for Pharmacist Prescribers in Primary Care: A Discrete Choice Experiment
by Rakhee Raghunandan & Kirsten Howard & Carlo A. Marra & June Tordoff & Alesha Smith - 93-108 Patient Perspectives and Experiences of Preventive Treatments and Self-Injectable Devices for Migraine: A Focus Group Study
by Jaein Seo & Charlie A. Smith & Caitlin Thomas & Tommi Tervonen & Asha Hareendran & Janet H. Ford & Virginia L. Stauffer & Robert A. Nicholson & Kevin Harrison Duffy & Antje Tockhorn-Heidenreich - 109-119 Towards Personalising the Use of Biologics in Rheumatoid Arthritis: A Discrete Choice Experiment
by Caroline M Vass & Anne Barton & Katherine Payne - 121-130 Dealing with Discontinuity in Cancer Care Trajectories: Patients’ Solutions
by Debbie Vermond & Souad Habhoubi & Esther Groot & Larike Bronkhorst & Niek Wit & Dorien Zwart - 131-143 Patient-Reported Outcomes in the Phase III BRIGHTE Trial of the HIV-1 Attachment Inhibitor Prodrug Fostemsavir in Heavily Treatment-Experienced Individuals
by Sarah-Jane Anderson & Miranda Murray & David Cella & Robert Grossberg & Debbie Hagins & William Towner & Marcia Wang & Andrew Clark & Amy Pierce & Cyril Llamoso & Peter Ackerman & Max Lataillade - 145-145 Correction to: A Systematic and Critical Review of Discrete Choice Experiments in Asthma and Chronic Obstructive Pulmonary Disease
by Hannah Collacott & Dian Zhang & Sebastian Heidenreich & Tommi Tervonen
November 2021, Volume 14, Issue 6
- 695-697 FDA Guidance on Assessment of Patient-Reported Outcomes in Cancer Trials: A Breath of Fresh Air or a Storm in a Teacup?
by Ari Gnanasakthy - 699-710 Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions
by 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 & Michael D. Kappelman - 711-718 Conducting Qualitative Research Online: Challenges and Solutions
by Stacy M. Carter & Patti Shih & Jane Williams & Chris Degeling & Julie Mooney-Somers - 719-740 The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews
by 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 & Pablo Alonso-Coello - 741-758 Methods for Conducting Stated Preference Research with Children and Adolescents in Health: A Scoping Review of the Application of Discrete Choice Experiments
by Christine Michaels-Igbokwe & Gillian R. Currie & Bryanne L. Kennedy & Karen V. MacDonald & Deborah A. Marshall - 759-773 Patient-Reported Experience and Outcome Measures in People Living with Diabetes: A Scoping Review of Instruments
by Jimmy Martin-Delgado & Mercedes Guilabert & José Mira-Solves - 775-790 A Systematic Review of Discrete Choice Experiments in Oncology Treatments
by Hannah Collacott & Vikas Soekhai & Caitlin Thomas & Anne Brooks & Ella Brookes & Rachel Lo & Sarah Mulnick & Sebastian Heidenreich - 791-802 Don’t Forget the Caregivers! A Discrete Choice Experiment Examining Caregiver Views of Integrated Youth Services
by Lisa D. Hawke & Lehana Thabane & Leanne Wilkins & Steve Mathias & Srividya Iyer & Joanna Henderson - 803-813 Valuing End-of-Life Care for Older People with Advanced Cancer: Is Dying at Home Important?
by Patricia Kenny & Deborah J. Street & Jane Hall & Meera Agar & Jane Phillips - 815-826 Designing HIV Testing and Self-Testing Services for Young People in Nigeria: A Discrete Choice Experiment
by 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 & Oliver Ezechi - 827-836 The Impact of the Risk Functional Form Assumptions on Maximum Acceptable Risk Measures
by Juan Marcos Gonzalez & Marco Boeri - 837-847 Assessing Patient Preferences in Rare Diseases: Direct Preference Elicitation in the Rare Chronic Kidney Disease, Immunoglobulin A Nephropathy
by Kevin Marsh & Kerrie-Anne Ho & Rachel Lo & Nancy Zaour & Aneesh Thomas George & Nigel S. Cook - 849-862 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)
by 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 & William R. Spreen - 869-870 Comment on Health Literacy: The Common Denominator of Healthcare Progress
by Halah Ibrahim & Satish Chandrasekhar Nair - 871-871 Authors’ Reply to Ibrahim and Nair’s Comment on: “Health Literacy: The Common Denominator of Healthcare Progress”
by Peter J. Pitts & Emily Freeman
September 2021, Volume 14, Issue 5
- 449-453 Methodological Priorities for Patient Preferences Research: Stakeholder Input to the PREFER Public–Private Project
by Ian P. Smith & Rachael L. DiSantostefano & Esther W. de Bekker-Grob & Bennett Levitan & Conny Berlin & Jorien Veldwijk & G. Ardine de Wit - 455-458 Health Literacy: The Common Denominator of Healthcare Progress
by Peter J. Pitts & Emily Freeman - 459-469 Time for Tele-TTO? Lessons Learned From Digital Interviewer-Assisted Time Trade-Off Data Collection
by Stefan A. Lipman - 471-484 Patient Centeredness in Hepatitis C Direct-Acting Antiviral Treatment Delivery to People Who Inject Drugs: A Scoping Review
by Moaz Abdelwadoud & T. Joseph Mattingly & Hemanuel Arroyo Seguí & Emily F. Gorman & Eleanor M. Perfetto - 485-503 The Use of Patient-Reported Outcome Measures in Rare Diseases and Implications for Health Technology Assessment
by Amanda Whittal & Michela Meregaglia & Elena Nicod - 505-532 What Are the Preferences of Patients With Rheumatoid Arthritis for Treatment Modification? A Scoping Review
by Suz Jack Chan & Hui Yee Yeo & Lisa K. Stamp & Gareth J. Treharne & Carlo A. Marra - 533-543 Development of a Patient-Reported Outcome Measure for Non-Alcoholic Steatohepatitis (NASH-CHECK): Results of a Qualitative Study
by Lynda C. Doward & Maria-Magdalena Balp & James Twiss & Christina Slota & Donna Cryer & Clifford A. Brass & Quentin M. Anstee & Arun J. Sanyal - 545-553 Patient and Public Involvement Refines the Design of ProtOeus: A Proposed Phase II Trial of Proton Beam Therapy in Oesophageal Cancer
by Owen J. Nicholas & Olivier Joseph & Annie Keane & Kate Cleary & Sue H. Campbell & Sarah H. Gwynne & Tom Crosby & Ganesh Radhakrishna & Maria A. Hawkins - 555-567 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
by Marcel Bilger & Mitesh Shah & Ngiap Chuan Tan & Cynthia Y. L. Tan & Filipinas G. Bundoc & Joann Bairavi & Eric A. Finkelstein - 569-579 Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences
by Julia F. Slejko & Yoon Duk Hong & Jamie L. Sullivan & Robert M. Reed & Susan dosReis - 581-589 Discordance Between Advanced Cancer Patients’ Perceived and Preferred Roles in Decision Making and its Association with Psychological Distress and Perceived Quality of Care
by Semra Ozdemir & Yubing Tian & Chetna Malhotra & Richard Harding & Gerald Choon Huat Koh & Nesaretnam Barr Kumarakulasinghe & Lai Heng Lee & Ssu Wynn Mon & Eric Finkelstein - 591-600 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
by Sarah Derrett & Mike Herdman & Lucky G. Ngwira & Elizabeth Yohe Moore & Jennifer Jelsma - 601-612 Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study
by 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 & Grainne Gorman - 613-623 Patient Perceptions Regarding Multiple Myeloma and Its Treatment: Qualitative Evidence from Interviews with Patients in the United Kingdom, France, and Germany
by Jianming He & Ashley Duenas & Hannah Collacott & Annette Lam & Katharine S. Gries & Robin Carson & Dietrich Potthoff & Nicola Trevor & Tommi Tervonen - 625-634 Patient-Evaluated Quality of Care is Related to Better Inflammatory Bowel Disease Outcomes: The IQCARO II Project
by Xavier Calvet & Fransesc Casellas & Roberto Saldaña & Daniel Carpio & Miguel Mínguez & Isabel Vera & Laura Marín & Berta Juliá - 635-647 Should I Have Adjuvant Immunotherapy? An Interview Study Among Adults with Resected Stage 3 Melanoma and Their Partners
by Ann Livingstone & Donna Milne & Kathy Dempsey & Danielle Marie Muscat & Alexander M. Menzies & Kirsten Howard & Martin R. Stockler & Rachael L. Morton - 649-660 Communicating Test Results from a General Health Check: Preferences from a Discrete Choice Experiment Survey
by Åsa Grauman & Mats Hansson & Stefan James & Brett Hauber & Jorien Veldwijk - 661-672 Patient Preferences of Low-Dose Aspirin for Cardiovascular Disease and Colorectal Cancer Prevention in Italy: A Latent Class Analysis
by Tommi Tervonen & Pareen Vora & Jaein Seo & Nicolas Krucien & Kevin Marsh & Raffaele De Caterina & Ulrike Wissinger & Montse Soriano Gabarró - 673-685 Experiences and Perspectives of Patients with Non-HIV-Associated Lipodystrophies and Their Caregivers: A Qualitative Study
by Aparna Gomes & Keziah Cook & Alex Wong & Edward Tuttle & A. Stratton & Rebecca Sanders - 687-690 Improving Access and Quality of Health Care in the United States: Shared Goals Among Patient Advocates
by Elisabeth M. Oehrlein & Jason Harris & Alan Balch & Pat Furlong & Eric Hargis & Mary Woolley & Eleanor Perfetto - 691-691 Correction to: Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences
by Julia F. Slejko & Yoon Duk Hong & Jamie L. Sullivan & Robert M. Reed & Susan dosReis - 693-693 Correction to: Patient Preferences in Rare Diseases: A Qualitative Study in Neuromuscular Disorders to Inform a Quantitative Preference Study
by 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 & Grainne Gorman
July 2021, Volume 14, Issue 4
- 379-380 Patient and Public Involvement in Health Economics and Outcomes Research
by Paula K. Lorgelly - 381-384 The Importance of Collaboration in Pursuit of Patient-Centered Value Assessment
by Mark T. Linthicum & Susan dosReis & Julia F. Slejko & T. Joseph Mattingly & Jennifer L. Bright - 385-387 Patient Commentary: Added Value and Validity to Research Outcomes Through Thoughtful Multifaceted Patient-Oriented Research
by Tiasha Burch - 389-397 Designing Discrete Choice Experiments Using a Patient-Oriented Approach
by Magda Aguiar & Mark Harrison & Sarah Munro & Tiasha Burch & K. Julia Kaal & Marie Hudson & Nick Bansback & Tracey-Lea Laba - 399-412 Utilising Patient and Public Involvement in Stated Preference Research in Health: Learning from the Existing Literature and a Case Study
by Gemma E. Shields & Lindsey Brown & Adrian Wells & Lora Capobianco & Caroline Vass - 413-420 Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development
by Elizabeth Clearfield & Ellen Tambor & Ellen M. Janssen & Donna A. Messner - 421-427 Patient and Public Involvement (PPI) in Health Economics Methodology Research: Reflections and Recommendations
by Hareth Al-Janabi & Jenny Coles & John Copping & Nishit Dhanji & Carol McLoughlin & Jacky Murphy & Jean Nicholls - 429-434 Involving Patients in Health Economics Research: “The PACTS Principles”
by Annie Hawton & Kate Boddy & Rebecca Kandiyali & Lynn Tatnell & Andy Gibson & Elizabeth Goodwin - 435-445 Developing a Framework for Public Involvement in Mathematical and Economic Modelling: Bringing New Dynamism to Vaccination Policy Recommendations
by Sophie Staniszewska & Edward M. Hill & Richard Grant & Peter Grove & Jarina Porter & Tinevimbo Shiri & Sue Tulip & Jane Whitehurst & Claire Wright & Samik Datta & Stavros Petrou & Matt Keeling - 447-447 Correction to: Developing a Framework for Public Involvement in Mathematical and Economic Modelling: Bringing New Dynamism to Vaccination Policy Recommendations
by Sophie Staniszewska & Edward M. Hill & Richard Grant & Peter Grove & Jarina Porter & Tinevimbo Shiri & Sue Tulip & Jane Whitehurst & Claire Wright & Samik Datta & Stavros Petrou & Matt Keeling
May 2021, Volume 14, Issue 3
- 303-307 Using Societal Values to Inform Public Health Policy During the COVID-19 Pandemic: The Role of Health Preference Research
by Rachael L. DiSantostefano & Fern Terris-Prestholt - 309-318 United States COVID-19 Vaccination Preferences (CVP): 2020 Hindsight
by Benjamin Matthew Craig - 319-330 Public Preferences for Allocating Ventilators in an Intensive Care Unit: A Discrete Choice Experiment
by Richard Norman & Suzanne Robinson & Helen Dickinson & Iestyn Williams & Elena Meshcheriakova & Kathleen Manipis & Matthew Anstey - 331-338 Public Preferences in Priority Setting when Admitting Patients to the ICU During the COVID-19 Crisis: A Pilot Study
by Merle Gijsbers & Iris Elise Keizer & Stephanie Else Schouten & Janneke Louise Trompert & Catharina G. M. Groothuis-Oudshoorn & Janine Astrid Til - 339-345 QALYs for COVID-19: A Comparison of US EQ-5D-5L Value Sets
by Stephen Poteet & Benjamin M. Craig - 347-358 Public Preferences for Government Response Policies on Outbreak Control
by Semra Ozdemir & Si Ning Germaine Tan & Isha Chaudhry & Chetna Malhotra & Eric Andrew Finkelstein - 359-371 Exploring the Trade-Off Between Economic and Health Outcomes During a Pandemic: A Discrete Choice Experiment of Lockdown Policies in Australia
by Kathleen Manipis & Deborah Street & Paula Cronin & Rosalie Viney & Stephen Goodall - 373-377 Willingness to Wait for a Vaccine Against COVID-19: Results of a Preference Survey
by Tommi Tervonen & Aura Cecilia Jimenez-Moreno & Nicolas Krucien & Heather Gelhorn & Kevin Marsh & Sebastian Heidenreich
March 2021, Volume 14, Issue 2
- 151-174 Eliciting Preferences for HIV Prevention Technologies: A Systematic Review
by S. Wilson Beckham & Norah L. Crossnohere & Margaret Gross & John F. P. Bridges - 175-186 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
by Nancy A. Scott & Mhairi Maskew & Rachel M. Fong & Ingrid E. Olson & Alana T. Brennan & Matthew P. Fox & Lungisile Vezi & Peter D. Ehrenkranz & Sydney Rosen - 187-196 Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values
by Sarah Costa & Dean A. Regier & Adam J. N. Raymakers & Samantha Pollard - 197-208 Patient- and Caregiver-Reported Burden of Transfusion-Dependent β-Thalassemia Measured Using a Digital Application
by Clark Paramore & Laurice Levine & Emma Bagshaw & Chengyu Ouyang & Amber Kudlac & Mark Larkin - 209-222 Measurement Properties of the EQ-5D-5L and EQ-5D-3L in Six Commonly Diagnosed Cancers
by 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 & Nan Luo - 223-240 Empirical Validity of a Generic, Preference-Based Capability Wellbeing Instrument (ICECAP-A) in the Context of Spinal Cord Injury
by Cassandra Mah & Vanessa K. Noonan & Stirling Bryan & David G. T. Whitehurst - 241-248 High-Efficacy Disease-Modifying Therapies in People with Relapsing–Remitting Multiple Sclerosis: The Role of Risk Attitude in Treatment Decisions
by Jorge Maurino & Javier Sotoca & Ángel P. Sempere & Luis Brieva & Carlos López de Silanes & Ana B. Caminero & María Terzaghi & Julia Gracia-Gil & Gustavo Saposnik - 249-268 Development and Validation of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ)
by Stacie Hudgens & Andrea Phillips-Beyer & Louise Newton & Dalma Seboek Kinter & Heike Benes - 269-281 What Factors Influence Non-Participation Most in Colorectal Cancer Screening? A Discrete Choice Experiment
by Esther W. Bekker-Grob & Bas Donkers & Jorien Veldwijk & Marcel F. Jonker & Sylvia Buis & Jan Huisman & Patrick Bindels - 283-293 How Do Respondents Interpret and View the EQ-VAS? A Qualitative Study of Three Asian Populations
by Rachel Lee-Yin Tan & Zhihao Yang & Ataru Igarashi & Michael Herdman & Nan Luo - 295-300 Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example
by Elisabeth M. Oehrlein & Xuemei Luo & Mirko Savone & Trudie Lobban & Amiee Kang & Brian Lee & Rex Gale & Silke Schoch & Eleanor Perfetto - 301-301 Correction to: Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids
by 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 & Susan Marlin
January 2021, Volume 14, Issue 1
- 5-10 Giving a Voice to Marginalised Groups for Health Care Decision Making
by Richard De Abreu Lourenço & Nancy Devlin & Kirsten Howard & Jason J. Ong & Julie Ratcliffe & Jo Watson & Esther Willing & Elisabeth Huynh - 11-16 Generating Relevant Information from Patients in the Technology-Enhanced Era of Patient-Focused Drug Development: Opportunities and Challenges
by Matthew Reaney & Jennifer Cline & James C. Wilson & Michael Posey - 17-53 Respondent Understanding in Discrete Choice Experiments: A Scoping Review
by Alison Pearce & Mark Harrison & Verity Watson & Deborah J. Street & Kirsten Howard & Nick Bansback & Stirling Bryan - 55-63 Mobilising the Next Generation of Stated-Preference Studies: the Association of Access Device with Choice Behaviour and Data Quality
by Caroline M. Vass & Marco Boeri - 65-74 Benefit–Risk or Risk–Benefit Trade-Offs? Another Look at Attribute Ordering Effects in a Pilot Choice Experiment
by Sebastian Heidenreich & Andrea Phillips-Beyer & Bruno Flamion & Melissa Ross & Jaein Seo & Kevin Marsh - 75-87 Development of a Conceptual Model of Chronic Lymphocytic Leukemia to Better Understand the Patient Experience
by Daniel Eek & Matthew Blowfield & Calvin Krogh & Helena Chung & Toby A. Eyre - 89-100 Comparing the Preferences of Patients and the General Public for Treatment Outcomes in Type 2 Diabetes Mellitus
by Norah L. Crossnohere & Sarah Janse & Ellen Janssen & John F. P. Bridges - 101-117 Testing and Psychometric Validation of a Pediatric Instrument to Self-Assess Symptoms of the Common Cold
by Rob Arbuckle & Patricia Halstead & Chris Marshall & Brenda Zimmerman & Kate Bolton & Antoine Regnault & Cathy Gelotte - 119-128 Use of Patient Preferences in Health Technology Assessment: Perspectives of Canadian, Belgian and German HTA Representatives
by Eline Overbeeke & Valérie Forrester & Steven Simoens & Isabelle Huys - 129-138 Utility Values for the CP-6D, a Cerebral Palsy-Specific Multi-Attribute Utility Instrument, Using a Discrete Choice Experiment
by Mina Bahrampour & Richard Norman & Joshua Byrnes & Martin Downes & Paul A. Scuffham - 139-140 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”
by Masamitsu Kobayashi & Jun Kako & Kohei Kajiwara & Ayako Ogata - 141-143 Response to Comment on “The Successful Return-To-Work Questionnaire for Cancer Survivors (I-RTW_CS): Development, Validity and Reproducibility”
by Michiel A. Greidanus & Angela G. E. M. Boer & Angelique E. Rijk & Monique H. W. Frings-Dresen & Sietske J. Tamminga - 145-146 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”
by Edouard Kujawski - 147-148 Patient Feedback on Research Studies: How to Interpret Feedback from the ‘Aware’ Patient?
by Kelly T. Gleason & Hae-Ra Han - 149-149 Correction to: Comparing the Preferences of Patients and the General Public for Treatment Outcomes in Type 2 Diabetes Mellitus
by Norah L. Crossnohere & Sarah Janse & Ellen Janssen & John F. P. Bridges
December 2020, Volume 13, Issue 6
- 643-644 It’s Time for Shared Decision Making and Person-Centred Care
by Martin Härter - 645-648 How the 10th ISDM Conference Got to Qualify as “Patients Included™”: Insight from Inside
by Mame-Awa Ndiaye & Kathy Kastner & Claire Ludwig & Jean Légaré & Thomas Mills & Marie-Pierre Gagnon & Sabrina Guay-Bélanger - 649-652 Patient-Oriented Research from the ISDM 2019 Conference: A Legacy Now More Relevant Than Ever
by Patrick M. Archambault & Sabrina Guay-Bélanger & Véronique Gélinas & Anik Giguère & Claire Ludwig & Mame Awa Ndiaye & Kathy Kastner & Dawn Stacey & Nick Bansback & Gary Groot & France Légaré - 653-666 Shared Decision Making in a Youth Mental Health Service Design and Research Project: Insights From the Pan-Canadian ACCESS Open Minds Network
by Chloé Guinaudie & Chantelle Mireault & Jimmy Tan & Yvonne Pelling & Sara Jalali & Ashok Malla & Srividya N. Iyer - 667-681 Shared Decision Making in Surgery: A Meta-Analysis of Existing Literature
by Kacper Niburski & Elena Guadagno & Samira Abbasgholizadeh-Rahimi & Dan Poenaru - 683-697 Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development
by Dena Schulman-Green & Emily Cherlin & Renee Capasso & Sarah S. Mougalian & Shiyi Wang & Cary P. Gross & Preeti S. Bajaj & Katherine Eakle & Sharmi Patel & Karin Douglas & Kerin Adelson - 699-707 Best–Worst Scaling Study to Identify Complications Patients Want to Be Informed About Prior to Abdominal Aortic Aneurysm Surgery
by Sylvana M. L. Mik & Balou Rietveld & Annemarie Auwerda & Ron Balm & Dirk T. Ubbink - 709-717 Using Mind Mapping in Family Meetings to Support Shared Decision Making with Pediatric and Geriatric Patients
by Matthew L. Russell & Anne H. Carr & Kathleen Kieran - 719-728 Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map
by Karine Toupin-April & Adam M. Huber & Ciarán M. Duffy & Laurie Proulx & Esi M. Morgan & Janice S. Cohen & Isabelle Gaboury & Linda C. Li & Peter Tugwell & Jennifer Stinson - 729-743 Adapting two American Decision Aids for Mild Traumatic Brain Injury to the Canadian Context Using the Nominal Group Technique
by 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 & Patrick M. Archambault - 745-756 Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids
by 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 & Susan Marlin - 757-766 High Users of Healthcare Services: Development and Alpha Testing of a Patient Decision Aid for Case Management
by 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 & Catherine Hudon - 767-768 Eliciting What Matters Most to People: The Whiteboard Initiative Proof of Concept
by Kathy Kastner
October 2020, Volume 13, Issue 5
- 471-519 Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review
by Danielle B. Rice & Andrea Carboni-Jiménez & Mara Cañedo-Ayala & Kimberly A. Turner & Matthew Chiovitti & Alexander W. Levis & Brett D. Thombs - 521-536 Quantitative Preferences for Lung Cancer Treatment from the Patients’ Perspective: A Systematic Review
by Yasuo Sugitani & Naoko Sugitani & Shunsuke Ono - 537-555 Mapping the Chinese Version of the EORTC QLQ-BR53 Onto the EQ-5D-5L and SF-6D Utility Scores
by Tong Liu & Shunping Li & Min Wang & Qiang Sun & Gang Chen - 557-566 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
by Laura Panattoni & Charles E. Phelps & Tracy A. Lieu & Stacey Alexeeff & Suzanne O’Neill & Jeanne S. Mandelblatt & Scott D. Ramsey - 567-582 The Successful Return-To-Work Questionnaire for Cancer Survivors (I-RTW_CS): Development, Validity and Reproducibility
by 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 & Sietske J. Tamminga - 583-597 The Impact of Reproductive Issues on Preferences of Women with Relapsing Multiple Sclerosis for Disease-Modifying Treatments
by 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 & Ana Manzano - 599-610 Outcome-Based Payment Schemes: What Outcomes Do Patients with Cancer Value?
by Paula Lorgelly & Jack Pollard & Patricia Cubi-Molla & Amanda Cole & Duncan Sim & Jon Sussex - 611-621 Stakeholder-Engaged Derivation of Patient-Informed Value Elements
by Susan dosReis & Beverly Butler & Juan Caicedo & Annie Kennedy & Yoon Duk Hong & Chengchen Zhang & Julia F. Slejko - 623-632 Real World Survey of Patient Engagement Status in Clinical Research: The First Input from Japan
by Nanae Tanemura & Tsuyoshi Sasaki & Junko Sato & Hisashi Urushihara - 633-642 Beliefs and Values About Gene Therapy and In-Utero Gene Editing in Patients with Hemophilia and Their Relatives
by Tania C. Vasquez-Loarte & Tiffany Lin Lucas & Julie Harris-Wai & Deborah J. Bowen
August 2020, Volume 13, Issue 4
- 389-400 “The Whole Game is Changing and You’ve Got Hope”: Australian Perspectives on Treatment Decision Making in Spinal Muscular Atrophy
by Michelle A. Farrar & Kate A. Carey & Sarah-Grace Paguinto & Nadine A. Kasparian & Richard Abreu Lourenço - 401-408 Are Videos or Text Better for Describing Attributes in Stated-Preference Surveys?
by Stephanie L. Lim & Jui-Chen Yang & Jessie Ehrisman & Laura J. Havrilesky & Shelby D. Reed - 409-422 Qualitative Thematic Analysis of Social Media Data to Assess Perceptions of Route of Administration for Antiretroviral Treatment among People Living with HIV
by Louis S. Matza & Trena M. Paulus & Cindy P. Garris & Nicolas Velde & Vasiliki Chounta & Kristen A. Deger - 423-434 Understanding Symptoms in RYR1-Related Myopathies: A Mixed-Methods Analysis Based on Participants’ Experience
by Carlos Capella-Peris & Mary M. Cosgrove & Irene C. Chrismer & M. Sonia Razaqyar & Jeffrey S. Elliott & Anna Kuo & Magalie Emile-Backer & Katherine G. Meilleur - 435-443 Agreement Among Paper and Electronic Modes of the EQ-5D-5L
by J. Jason Lundy & Stephen Joel Coons & Emuella Flood & Mira J. Patel - 445-455 Heterogeneity in Preferences for Anti-coagulant Use in Atrial Fibrillation: A Latent Class Analysis
by Janine Til & Catharina Oudshoorn-Groothuis & Marieke Weernink & Clemens Birgelen