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Content
September 2021, Volume 14, Issue 5
- 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 - 457-467 Patient Experiences with Avelumab in Treatment-Naïve Metastatic Merkel Cell Carcinoma: Longitudinal Qualitative Interview Findings from JAVELIN Merkel 200, a Registrational Clinical Trial
by 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 & Murtuza Bharmal - 469-470 Correction to: Patient-Reported Outcomes in an Observational Cohort of HIV-1-Infected Adults on Darunavir/Cobicistat-Based Regimens: Beyond Viral Suppression
by 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 & Daniela Mancusi
June 2020, Volume 13, Issue 3
- 255-255 Our Most Powerful Weapon to Fight COVID-19: Patient Involvement
by Peter J. Pitts - 257-288 A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People
by Samantha Husbands & Paul Mark Mitchell & Joanna Coast - 289-306 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
by Diane M. Turner-Bowker & Andrew Yaworsky & Andrew Palladino & Roger E. Lamoureux & Masami Kelly & Emily Love & Andreas M. Pleil & Alan Shields & Jane Loftus - 307-315 Empirical Investigation of Ranking vs Best–Worst Scaling Generated Preferences for Attributes of Quality of Life: One and the Same or Differentiable?
by Julie Ratcliffe & Billingsley Kaambwa & Claire Hutchinson & Emily Lancsar - 317-325 A Qualitative Research for Defining Meaningful Attributes for the Treatment of Inflammatory Bowel Disease from the Patient Perspective
by 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 & Francesc Casellas - 327-337 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
by Shane Sinclair & Priya Jaggi & Thomas F. Hack & Lara Russell & Susan E. McClement & Lena Cuthbertson & Lucy E. Selman & Carlo Leget - 339-346 Population Preferences for Treatments When Critically Ill: A Discrete Choice Experiment
by Matthew H. Anstey & Imogen A. Mitchell & Charlie Corke & Richard Norman - 347-361 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
by Maria C. McCarthy & Richard De Abreu Lourenco & Laura J. McMillan & Elena Meshcheriakova & Alice Cao & Lynn Gillam - 363-373 The Economic Impact on Australian Patients with Neuroendocrine Tumours
by Louisa G. Gordon & Thomas M. Elliott & Kate Wakelin & Simone Leyden & John Leyden & Michael Michael & Nick Pavlakis & Jan Mumford & Eva Segelov & David K. Wyld - 375-387 Patient-Reported Outcomes in an Observational Cohort of HIV-1-Infected Adults on Darunavir/Cobicistat-Based Regimens: Beyond Viral Suppression
by 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 & Daniela Mancusi
April 2020, Volume 13, Issue 2
- 145-149 Use of Patient Preference Studies in HTA Decision Making: A NICE Perspective
by Jacoline C. Bouvy & Luke Cowie & Rosemary Lovett & Deborah Morrison & Heidi Livingstone & Nick Crabb - 151-162 Assessing the Patient Experience of Hypoparathyroidism Symptoms: Development of the Hypoparathyroidism Patient Experience Scale-Symptom (HPES-Symptom)
by Meryl Brod & Laura Tesler Waldman & Alden Smith & David Karpf - 163-173 A Picture is Worth a Thousand Words: The Role of Survey Training Materials in Stated-Preference Studies
by Caroline M. Vass & Niall J. Davison & Geert Stichele & Katherine Payne - 175-188 Using Animation to Self-Report Health: A Randomized Experiment with Children
by Carla Guerriero & Neus Abrines Jaume & Karla Diaz-Ordaz & Katherine Loraine Brown & Jo Wray & Joan Ashworth & Matt Abbiss & John Cairns - 189-200 “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
by Mona L. Martin & Katarina Halling & Daniel Eek & Matthew Reaney - 201-210 Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study
by 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 & Samantha C. Gouw - 211-223 A Hierarchical Bayes Approach to Modeling Heterogeneity in Discrete Choice Experiments: An Application to Public Preferences for Prenatal Screening
by Tima Mohammadi & Wei Zhang & Julie Sou & Sylvie Langlois & Sarah Munro & Aslam H. Anis - 225-234 Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives
by Suz Jack Chan & Lisa K. Stamp & Nicola Liebergreen & Henry Ndukwe & Carlo Marra & Gareth J. Treharne - 235-250 Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold
by Patricia Halstead & Rob Arbuckle & Chris Marshall & Brenda Zimmerman & Kate Bolton & Cathy Gelotte - 251-254 Involving People with Learning Disabilities in Guideline Development
by Justine Karpusheff & Charlotte Haynes & Fiona Glen & Gillian Leng
February 2020, Volume 13, Issue 1
- 1-6 The Patient Perspective: A Matter of Minutes
by Rocco Falchetto - 7-10 Patient Preferences in the Medical Product Lifecycle
by Jennifer A. Whitty & Esther W. Bekker-Grob & Nigel S. Cook & Fern Terris-Prestholt & Michael Drummond & Rocco Falchetto & Hans L. Hillege - 11-21 Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development
by Dmitry Khodyakov & Sean Grant & Brian Denger & Kathi Kinnett & Ann Martin & Holly Peay & Ian Coulter - 23-30 The Shared Decision-Making Process in the Pharmacological Management of Depression
by Malcom Hopwood - 31-41 Opening the ‘Black Box’: An Overview of Methods to Investigate the Decision-Making Process in Choice-Based Surveys
by Dan Rigby & Caroline Vass & Katherine Payne - 43-55 Motivational Interviewing as a Strategy to Impact Outcomes in Heart Failure Patients: A Systematic Review
by Nabin Poudel & Jan Kavookjian & Michael J. Scalese - 57-69 Patient Decision Aid (PDA) for Patients with Rheumatoid Arthritis Reduces Decisional Conflict and Improves Readiness for Treatment Decision Making
by José Luis Pablos & Juan Angel Jover & José Andrés Roman-Ivorra & José Inciarte-Mundo & Tatiana Dilla & José Antonio Sacristan & Marta Comellas & Luís Lizán - 71-81 African Americans Want a Focus on Shared Decision-Making in Asthma Adherence Interventions
by Maureen George & Adriana Arcia & Annie Chung & Danielle Coleman & Jean-Marie Bruzzese - 83-102 Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers
by Rebecca Crawford & Kate Sully & Rebecca Conroy & Chloe Johnson & Lynda Doward & Timothy Bell & Verna Welch & Francois Peloquin & Adam Gater - 103-119 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
by Myriam Gagné & Sophie Lauzier & Justine Babineau-Therrien & Christine Hamel & Sara-Edith Penney & Jean Bourbeau & Jocelyne Moisan & Louis-Philippe Boulet - 121-136 Reporting Formative Qualitative Research to Support the Development of Quantitative Preference Study Protocols and Corresponding Survey Instruments: Guidelines for Authors and Reviewers
by Ilene L. Hollin & Benjamin M. Craig & Joanna Coast & Kathleen Beusterien & Caroline Vass & Rachael DiSantostefano & Holly Peay - 137-143 11th Meeting Of The International Academy Of Health Preference Research
by Emily Lancsar
December 2019, Volume 12, Issue 6
- 553-557 Advancing the Use of Patient Preference Information as Scientific Evidence in Medical Product Evaluation: A Summary Report of the Patient Preference Workshop
by 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 & Anindita Saha - 559-569 Patient Preferences for Breast Cancer Treatment Interventions: A Systematic Review of Discrete Choice Experiments
by Renata Leborato Guerra & Luciana Castaneda & Rita de Cássia Ribeiro Albuquerque & Camila Belo Tavares Ferreira & Flávia de Miranda Corrêa & Ricardo Ribeiro Alves Fernandes & Liz Maria Almeida - 571-592 Behavioral Economic Insights to Improve Medication Adherence in Adults with Chronic Conditions: A Scoping Review
by Jacqueline Roseleur & Gillian Harvey & Nigel Stocks & Jonathan Karnon - 593-609 Effect of Treatment Preference in Randomized Controlled Trials: Systematic Review of the Literature and Meta-Analysis
by Dimittri Delevry & Quang A. Le - 611-619 Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII)
by Jane R. Wells & Adam Gater & Chris Marshall & Theo Tritton & Parth Vashi & Sophia Kessabi - 621-629 Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease
by Kelly M. Dumais & Nadeeka Dias & Laura Khurana & Sarah Tressel Gary & Brooke Witherspoon & Christopher J. Evans & Susan M. Dallabrida - 631-638 What Matters Most for Treatment Decisions in Hepatitis C: Effectiveness, Costs, and Altruism
by T. Joseph Mattingly & Julia F. Slejko & Eleanor M. Perfetto & Shyamasundaran Kottilil & C. Daniel Mullins - 639-650 Does Device or Connection Type Affect Health Preferences in Online Surveys?
by John D. Hartman & Benjamin M. Craig - 651-660 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
by Eric S. Surrey & Ahmed M. Soliman & Hannah L. Palac & Sanjay K. Agarwal - 661-663 Community-Based Participatory Research: Incorporating the Integral Voice of Community in Study Design
by Desirree Pizarro & Nicole K. Richards & Susan Coots & Elizabeth Crockett & Christopher P. Morley & Brooke A. Levandowski
October 2019, Volume 12, Issue 5
- 439-443 Support Tools for Preference-Sensitive Decisions in Healthcare: Where Are We? Where Do We Go? How Do We Get There?
by Jan Ostermann & Derek S. Brown & Janine A. Til & Nick Bansback & France Légaré & Deborah A. Marshall & Meenakshi Bewtra - 445-459 Patient-Reported Outcome Measures in Atopic Dermatitis and Chronic Hand Eczema in Adults
by Amy Barrett & Julie Hahn-Pedersen & Nana Kragh & Emily Evans & Ari Gnanasakthy - 461-474 Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review
by Isolde M. Busch & Francesca Moretti & Giulia Travaini & Albert W. Wu & Michela Rimondini - 475-489 Systematic Review of Public Preferences for the Allocation of Donor Organs for Transplantation: Principles of Distributive Justice
by Carina Oedingen & Tim Bartling & Axel C. Mühlbacher & Harald Schrem & Christian Krauth - 491-501 Do Non-participants at Screening have a Different Threshold for an Acceptable Benefit–Harm Ratio than Participants? Results of a Discrete Choice Experiment
by Tina Birgitte Hansen & Jes Sanddal Lindholt & Axel Diederichsen & Rikke Søgaard - 503-512 Patient Experience with Congenital (Hereditary) Thrombotic Thrombocytopenic Purpura: A Conceptual Framework of Symptoms and Impacts
by Abiola O. Oladapo & Diane Ito & Christopher Hibbard & Stephanie E. Bean & Robert N. Krupnick & Bruce M. Ewenstein - 513-526 Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA
by 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 & Isabelle Huys - 527-537 Analysis of Clinical Trial Exit Interview Data in Patients with Treatment-Resistant Depression
by Sandy Lewis & Carla Romano & Geert Bruecker & James W. Murrough & Richard Shelton & Jaskaran B. Singh & Carol Jamieson - 539-549 A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)
by Tonya A. Winders & Andrew M. Wilson & Monica J. Fletcher & Anthony McGuinness & David B. Price
August 2019, Volume 12, Issue 4
- 361-363 Towards Meaningful Engagement for the Patient Voice
by Peter J. Pitts - 365-373 Health-Related Quality of Life in Patients with Adult-Onset Myotonic Dystrophy Type 1: A Systematic Review
by Erik Landfeldt & Josefin Edström & Cecilia Jimenez-Moreno & Baziel G. M. Engelen & Janbernd Kirschner & Hanns Lochmüller - 375-381 Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust
by Elisabeth M. Oehrlein & Jennifer S. Graff & Jason Harris & Eleanor M. Perfetto - 383-392 EQ-5D-5L is More Responsive than EQ-5D-3L to Treatment Benefit of Cataract Surgery
by Mihir Gandhi & Marcus Ang & Kelvin Teo & Chee Wai Wong & Yvonne Chung-Hsi Wei & Rachel Lee-Yin Tan & Mathieu F. Janssen & Nan Luo - 393-404 Patient and Oncologist Preferences for the Treatment of Adults with Advanced Soft Tissue Sarcoma: A Discrete Choice Experiment
by Jasmina Ivanova & Lisa M. Hess & Viviana Garcia-Horton & Sophia Graham & Xinyue Liu & Yajun Zhu & Steven Nicol - 405-417 Measuring the Burden of Schizophrenia Using Clinician and Patient-Reported Measures: An Exploratory Analysis of Construct Validity
by Matthew Franklin & Clara Mukuria & Brendan Mulhern & Irwin Tran & John Brazier & Stuart Watson - 419-428 Validity and Reliability of a Novel Multimodal Questionnaire for the Assessment of Abdominal Symptoms in People with Cystic Fibrosis (CFAbd-Score)
by Anke Jaudszus & Elisa Zeman & Tatjana Jans & Elena Pfeifer & Harold Tabori & Christin Arnold & Ruth K. Michl & Michael Lorenz & Natalie Beiersdorf & Jochen G. Mainz - 437-437 Correction to: Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study
by Emma Dures & Sarah Hewlett & Jane Lord & Clive Bowen & Neil McHugh & William Tillett
June 2019, Volume 12, Issue 3
- 281-285 Issues in the Design of Discrete Choice Experiments
by Richard Norman & Benjamin M. Craig & Paul Hansen & Marcel F. Jonker & John Rose & Deborah J. Street & Brendan Mulhern - 287-295 A Guide to Measuring and Interpreting Attribute Importance
by Juan Marcos Gonzalez - 297-305 Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
by Karin Schölin Bywall & Jorien Veldwijk & Mats G. Hansson & Ulrik Kihlbom - 307-317 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
by 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 & Luis Cea-Calvo - 319-326 High Proportion of Subjective Component to the Disease Activity Score is Associated with Favorable Response to Abatacept in Rheumatoid Arthritis
by Jeong Seok Lee & Harris Ahmad & Seung-Cheol Shim & Sang-Cheol Bae & Yeong Wook Song & Eun Young Lee - 327-337 Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach
by Brownsyne Tucker Edmonds & Shelley M. Hoffman & Dustin Lynch & Erin Jeffries & Kelli Jenkins & Sarah Wiehe & Nerissa Bauer & Miriam Kuppermann - 339-348 Elicitation of Health-Related Utility in Perianal Fistula in Crohn’s Disease
by Louise Longworth & Donna Fountain & Jeshika Singh & Ismail Azzabi & Glynn Owen & Ulf Lundstam & Shaji Sebastian - 349-360 The Value of Treatment Processes in Germany: A Discrete Choice Experiment on Patient Preferences in Complementary and Conventional Medicine
by Daniela Adam & Theresa Keller & Axel Mühlbacher & Maximilian Hinse & Katja Icke & Michael Teut & Benno Brinkhaus & Thomas Reinhold
April 2019, Volume 12, Issue 2
- 171-181 A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients
by Ahmad Shahabeddin Parizi & Paul F. M. Krabbe & Erik Buskens & Stephan J. L. Bakker & Karin M. Vermeulen - 183-197 Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties
by Nuriye Kupeli & Bridget Candy & Gabrielle Tamura-Rose & Guy Schofield & Natalie Webber & Stephanie E. Hicks & Theodore Floyd & Bella Vivat & Elizabeth L. Sampson & Patrick Stone & Trefor Aspden - 199-212 Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies
by Laura Ellen Ashcraft & Miya Asato & Amy J. Houtrow & Dio Kavalieratos & Elizabeth Miller & Kristin N. Ray - 213-222 Impact of Carotid Artery Stenosis on Quality of Life: A Systematic Review
by Ahmed Aber & Aoife Howard & Helen Buckley Woods & Georgina Jones & Jonathan Michaels - 223-233 Treatment Decisions for Advanced Non-Squamous Non-Small Cell Lung Cancer: Patient and Physician Perspectives on Maintenance Therapy
by 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 & Katherine B. Winfree - 235-246 General Population vs. Patient Preferences in Anticoagulant Therapy: A Discrete Choice Experiment
by Mehdi Najafzadeh & Sebastian Schneeweiss & Niteesh K. Choudhry & Jerry Avorn & Joshua J. Gagne - 247-257 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
by John F. P. Bridges & Jui-Hua Tsai & Ellen Janssen & Norah L. Crossnohere & Ryan Fischer & Holly Peay - 259-265 Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs
by Annie Madden & Max Hopwood & Joanne Neale & Carla Treloar - 267-276 Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement
by Traci M. Kazmerski & Elizabeth Miller & Gregory S. Sawicki & Phaedra Thomas & Olga Prushinskaya & Eliza Nelson & Kelsey Hill & Anna Miller & S. Jean Emans - 277-280 Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project
by Elisabeth M. Oehrlein & T. Rose Love & Chinenye Anyanwu & Maya L. Hanna & Jacqueline Kraska & Eleanor M. Perfetto
February 2019, Volume 12, Issue 1
- 1-14 Including Opt-Out Options in Discrete Choice Experiments: Issues to Consider
by Danny Campbell & Seda Erdem - 15-55 Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
by Eve Namisango & Katherine Bristowe & Matthew J. Allsop & Fliss E. M. Murtagh & Melanie Abas & Irene J. Higginson & Julia Downing & Richard Harding - 57-67 Symptoms and Impacts in Metastatic Castration-Resistant Prostate Cancer: Qualitative Findings from Patient and Physician Interviews
by Stefan Holmstrom & Shevani Naidoo & James Turnbull & Emily Hawryluk & Jean Paty & Robert Morlock - 69-82 Video or In-Clinic Consultation? Selection of Attributes as Preparation for a Discrete Choice Experiment Among Key Stakeholders
by Irit Chudner & Margalit Goldfracht & Hadass Goldblatt & Anat Drach-Zahavy & Khaled Karkabi - 83-95 Understanding ‘Good Health care’ from the Patient’s Perspective: Development of a Conceptual Model Using Group Concept Mapping
by Stacey A. McCaffrey & Emil Chiauzzi & Caroline Chan & Michael Hoole - 97-112 A Conceptual Model of Angelman Syndrome and Review of Relevant Clinical Outcomes Assessments (COAs)
by Joseph C. Grieco & Beverly Romero & Emuella Flood & Raquel Cabo & Jeannie Visootsak - 113-123 “I Was Trying to Do the Maths”: Exploring the Impact of Risk Communication in Discrete Choice Experiments
by Caroline Vass & Dan Rigby & Katherine Payne - 125-136 Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia
by Jan R. Oyebode & Simon Pini & Emma Ingleson & Molly Megson & Mike Horton & Linda Clare & Hareth Al-Janabi & Carol Brayne & Penny Wright - 137-148 Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment
by Sophy Barber & Hilary Bekker & Joachim Marti & Sue Pavitt & Balvinder Khambay & David Meads - 149-162 Validity of the Patient Experiences and Satisfaction with Medications (PESaM) Questionnaire
by 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 & Carmen D. Dirksen - 163-165 Implementing a Health Confidence Tool at Time of Discharge
by T. Joseph Mattingly & Khang Nong - 167-167 Comment on: Tools Measuring Quality of Death, Dying, and Care, Completed After Death: Systematic Review of Psychometric Properties
by José E. Montoya-Medina & Giordana Poletti-Jabbour & Nicole Urrunaga & Heyson A. Jiménez - 169-169 Authors’ Reply to Montoya et al. Comment On: “Tools Measuring Quality of Death, Dying, and Care, Completed After Death: Systematic Review of Psychometric Properties”
by Nuriye Kupeli & Bridget Candy & Gabrielle Tamura-Rose & Guy Schofield & Natalie Webber & Stephanie E. Hicks & Theodore Floyd & Bella Vivat & Elizabeth L. Sampson & Patrick Stone & Trefor Aspden
December 2018, Volume 11, Issue 6
- 577-579 Patient-Consent Disconnects in Clinical Research
by Neal W. Dickert & JoAnne Brabson & Rodney J. Hunter & Michele Riedford - 581-589 Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments
by Karen M. Facey & Nicola Bedlington & Sarah Berglas & Neil Bertelsen & Ann N. V. Single & Victoria Thomas - 591-598 Oh, the Places We’ll Go: Patient-Reported Outcomes and Electronic Health Records
by Sarah G. Gensheimer & Albert W. Wu & Claire F. Snyder - 599-611 Colorectal Cancer Screening: Preferences, Past Behavior, and Future Intentions
by Carol Mansfield & Donatus U. Ekwueme & Florence K. L. Tangka & Derek S. Brown & Judith Lee Smith & Gery P. Guy & Chunyu Li & Brett Hauber - 613-624 Women’s Preferences for Birthing Hospital in Denmark: A Discrete Choice Experiment
by Nasrin Tayyari Dehbarez & Morten Raun Mørkbak & Dorte Gyrd-Hansen & Niels Uldbjerg & Rikke Søgaard - 625-635 Spillover Effects of Maternal Chronic Disease on Children’s Quality of Life and Behaviors Among Low-Income Families
by Vivian Y. W. Guo & Carlos K. H. Wong & Rosa S. M. Wong & Esther Y. T. Yu & Patrick Ip & Cindy L. K. Lam - 637-648 Unlocking the Value of Literature in Health Co-Design: Transforming Patient Experience Publications into a Creative and Accessible Card Tool
by Clare Villalba & Anjali Jaiprakash & Jared Donovan & Jonathan Roberts & Ross Crawford - 649-663 Development of a Discrete Choice Experiment (DCE) Questionnaire to Understand Veterans’ Preferences for Tobacco Treatment in Primary Care
by David A. Katz & Kenda R. Stewart & Monica Paez & Mark W. Weg & Kathleen M. Grant & Christine Hamlin & Gary Gaeth - 665-675 Converting Parkinson-Specific Scores into Health State Utilities to Assess Cost-Utility Analysis
by Gang Chen & Miguel A. Garcia-Gordillo & Daniel Collado-Mateo & Borja Pozo-Cruz & José C. Adsuar & José Manuel Cordero-Ferrera & José María Abellán-Perpiñán & Fernando Ignacio Sánchez-Martínez
October 2018, Volume 11, Issue 5
- 463-466 Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds
by Catharina G. M. Groothuis-Oudshoorn & Terry N. Flynn & Hong Il Yoo & Jay Magidson & Mark Oppe - 467-473 Symposium Title: Preference Evidence for Regulatory Decisions
by Juan Marcos Gonzalez & F. Reed Johnson & Bennett Levitan & Rebecca Noel & Holly Peay - 475-488 Accounting for Scale Heterogeneity in Healthcare-Related Discrete Choice Experiments when Comparing Stated Preferences: A Systematic Review
by Stuart J. Wright & Caroline M. Vass & Gene Sim & Michael Burton & Denzil G. Fiebig & Katherine Payne - 489-502 Themes that Determine Quality of Life in Patients with Peripheral Arterial Disease: A Systematic Review
by Ahmed Aber & Elizabeth Lumley & Patrick Phillips & Helen Buckley Woods & Georgina Jones & Jonathan Michaels - 503-514 Patient Preferences for Managing Insomnia: A Discrete Choice Experiment
by Janet M. Y. Cheung & Delwyn J. Bartlett & Carol L. Armour & Bandana Saini & Tracey-Lea Laba - 515-526 The Parker Model: Applying a Qualitative Three-Step Approach to Optimally Utilize Input from Stakeholders When Introducing New Device Technologies in the Management of Chronic Rheumatic Diseases
by Tanja S. Jørgensen & Marie Skougaard & Peter C. Taylor & Hans C. Asmussen & Anne Lee & Louise Klokker & Louise Svejstrup & Irina Mountian & Henrik Gudbergsen & Lars Erik Kristensen - 527-537 Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations
by Amy Simon & Farrah Pompilus & William Querbes & Alex Wei & Sara Strzok & Craig Penz & Desiree Lyon Howe & Jessica R. Hungate & Jae B. Kim & Sonalee Agarwal & Patrick Marquis - 539-546 Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life
by Joanna Coast & Cara Bailey & Rosanna Orlando & Kathy Armour & Rachel Perry & Louise Jones & Philip Kinghorn - 547-559 Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States
by Eileen Mack Thorley & Ravi G. Iyer & Paul Wicks & Chris Curran & Sanjay K. Gandhi & Victor Abler & Karen E. Anderson & Noelle E. Carlozzi - 561-573 Patient-Reported Symptoms Over 48 Weeks Among Participants in Randomized, Double-Blind, Phase III Non-inferiority Trials of Adults with HIV on Co-formulated Bictegravir, Emtricitabine, and Tenofovir Alafenamide versus Co-formulated Abacavir, Dolutegravir, and Lamivudine
by David Wohl & Amanda Clarke & Franco Maggiolo & Will Garner & Marianne Laouri & Hal Martin & Erin Quirk