BOOK
Patient Reported Outcomes in Rheumatic Diseases, An Issue of Rheumatic Disease Clinics of North America, E-Book
Jennifer L. Barton | Patti Katz
(2016)
Additional Information
Book Details
Abstract
This issue is devoted to patient reported outcomes and their impact in the study of rheumatic diseases and the authors will also discuss PROs and vulnerable populations with rheumatic disease; technology, electronic health records and PROs: past, present and future; the promise of PROMIS – a uniform approach to PROs across rheumatic diseases, quality measures and PROs and how they relate and the importance of PROs in delivering quality care in the rheumatic diseases, and many more exciting articles.
Table of Contents
| Section Title | Page | Action | Price |
|---|---|---|---|
| Front Cover | Cover | ||
| Patient Reported Outcomes in Rheumatic Diseases | i | ||
| Copyright\r | ii | ||
| Contributors | iii | ||
| CONSULTING EDITOR | iii | ||
| EDITORS | iii | ||
| AUTHORS | iii | ||
| Contents | vii | ||
| Foreword: Patient-Reported Outcomes in Rheumatic Diseases\r | vii | ||
| Preface: The Patient Experience: Patient-Reported Outcomes in Rheumatology\r | vii | ||
| The History of Patient-Reported Outcomes in Rheumatology\r | vii | ||
| Patient-Reported Outcomes in Rheumatoid Arthritis\r | vii | ||
| Patient-Reported Measures of Physical Function in Knee Osteoarthritis\r | vii | ||
| Patient-Reported Outcomes in Systemic Lupus Erythematosus\r | viii | ||
| Patient-Reported Outcomes in Psoriatic Arthritis\r | viii | ||
| Patient-Reported Outcomes in Axial Spondyloarthritis\r | viii | ||
| Patient-Reported Outcome Measures in Systemic Sclerosis (Scleroderma)\r | viii | ||
| Patient-Reported Outcomes and Fibromyalgia\r | ix | ||
| Using Patient-Reported Outcome Measures to Capture the Patient’s Voice in Research and Care of Juvenile Idiopathic Arthritis\r | ix | ||
| The Challenge and Opportunity of Capturing Patient Reported Measures of\rRheumatoid Arthritis Disease Activity in Vulnerable Populations with Limited\rHealth Literacy and Limited English Proficiency | ix | ||
| Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology\r | ix | ||
| The Promise of Patient-Reported Outcomes Measurement Information System—Turning Theory into Reality: A Uniform Approach to ... | x | ||
| RHEUMATIC DISEASE CLINICS\rOF NORTH AMERICA | xi | ||
| FORTHCOMING ISSUES | xi | ||
| August 2016 | xi | ||
| November 2016 | xi | ||
| February 2017 | xi | ||
| RECENT ISSUES | xi | ||
| February 2016 | xi | ||
| November 2015 | xi | ||
| August 2015 | xi | ||
| Foreword: Patient-Reported Outcomes in Rheumatic Diseases\r | xiii | ||
| Preface: The Patient Experience: Patient-Reported Outcomes in Rheumatology\r | xv | ||
| The History of Patient-Reported Outcomes in Rheumatology | 205 | ||
| Key points | 205 | ||
| INTRODUCTION | 205 | ||
| THE BEGINNING OF PATIENT-REPORTED OUTCOMES IN RHEUMATIC DISEASES | 206 | ||
| MEASURES AVAILABLE FOR ASSESSING PATIENT-REPORTED OUTCOMES IN RHEUMATIC DISEASE | 207 | ||
| REFINEMENTS OF THE PATIENT-REPORTED OUTCOME MEASUREMENT APPROACH | 208 | ||
| PATIENT-REPORTED OUTCOME MEASURES IN ROUTINE RHEUMATOLOGIC CLINICAL CARE AND CLINICAL TRIALS | 209 | ||
| SUMMARY | 210 | ||
| ACKNOWLEDGMENTS | 210 | ||
| REFERENCES | 210 | ||
| Patient-Reported Outcomes in Rheumatoid Arthritis | 219 | ||
| Key points | 219 | ||
| WHAT ARE PATIENT-REPORTED OUTCOMES AND WHY ARE THEY IMPORTANT? | 219 | ||
| HISTORY OF PATIENT-REPORTED OUTCOMES IN RHEUMATOID ARTHRITIS | 220 | ||
| USE OF PATIENT-REPORTED OUTCOMES IN DIFFERENT CURRENT SETTINGS | 221 | ||
| Quality Indicators | 221 | ||
| Patient-reported Outcomes in Remission | 222 | ||
| Patient-reported Disease Activity Scores | 223 | ||
| SPECIFIC PATIENT-REPORTED OUTCOME MEASURES BY DOMAINS IN RHEUMATOID ARTHRITIS | 223 | ||
| Physical Function | 224 | ||
| Pain | 226 | ||
| Patient Global | 226 | ||
| Additional Patient-reported Outcome Domains | 227 | ||
| THE FUTURE | 227 | ||
| REFERENCES | 229 | ||
| Patient-Reported Measures of Physical Function in Knee Osteoarthritis | 239 | ||
| Key points | 239 | ||
| INTRODUCTION | 239 | ||
| THE IMPORTANCE OF MEASURING THE CONSTRUCT OF PHYSICAL FUNCTION | 240 | ||
| PSYCHOMETRIC PROPERTIES | 240 | ||
| UNIVERSITIES OSTEOARTHRITIS INDEXPHYSICAL FUNCTION SUBSCALE | 241 | ||
| Reliability | 242 | ||
| Validity | 242 | ||
| Sensitivity to Change and Responsiveness | 242 | ||
| Strengths and Weaknesses | 242 | ||
| KNEE INJURY AND OSTEOARTHRITIS OUTCOME SCORE FUNCTION IN SPORT AND RECREATION SUBSCALE AND PHYSICAL FUNCTION SHORTFORM | 242 | ||
| Reliability | 244 | ||
| Validity | 244 | ||
| Sensitivity to Change and Responsiveness | 246 | ||
| Strengths and Weaknesses | 246 | ||
| PATIENT REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM PHYSICAL FUNCTION | 247 | ||
| Reliability | 247 | ||
| Validity | 247 | ||
| Sensitivity to Change and Responsiveness | 248 | ||
| Strengths and Weaknesses | 248 | ||
| SUMMARY | 249 | ||
| REFERENCES | 249 | ||
| Patient-Reported Outcomes in Systemic Lupus Erythematosus | 253 | ||
| Key points | 253 | ||
| INTRODUCTION | 253 | ||
| GENERIC PATIENT-REPORTED OUTCOME INSTRUMENTS | 254 | ||
| SYSTEMIC LUPUS ERYTHEMATOSUS-SPECIFIC PATIENT-REPORTED OUTCOME TOOLS | 257 | ||
| SUMMARY/DISCUSSION | 259 | ||
| REFERENCES | 259 | ||
| Patient-Reported Outcomes in Psoriatic Arthritis | 265 | ||
| Key points | 265 | ||
| INTRODUCTION | 265 | ||
| METHODS | 266 | ||
| PATIENT-REPORTED OUTCOMES IN PSORIATIC ARTHRITIS STUDIES | 266 | ||
| Pain | 266 | ||
| Psoriatic Arthritis Global Assessment Scales | 267 | ||
| Health-Related Quality of Life | 267 | ||
| The Medical Outcomes Study Short Form-36 | 270 | ||
| The European Quality of Life Index-5 Dimensions | 270 | ||
| Psoriatic Arthritis Quality of Life Index | 270 | ||
| Psoriatic Arthritis Impact of Disease | 271 | ||
| Patient-Reported Disease Activity, Disability, and Physical Function | 271 | ||
| Bath Ankylosing Spondylitis Disease Activity Index | 272 | ||
| Health Assessment Questionnaire Disability Index | 272 | ||
| Disabilities of Arm, Shoulder, and Hand Questionnaire | 272 | ||
| Skin Symptoms and Related Impact | 272 | ||
| Dermatology Life Quality Index | 272 | ||
| Psoriasis Symptom Inventory | 273 | ||
| Worst Itch Numerical Rating Scale | 273 | ||
| Fatigue | 273 | ||
| Functional Assessment Chronic Illness Therapy-Fatigue | 273 | ||
| Fatigue Visual Analog Scale | 273 | ||
| Work Productivity | 273 | ||
| Sleep Disturbance | 274 | ||
| INCLUSION OF PATIENT-REPORTED OUTCOMES IN COMPOSITE MEASURES FOR PSORIATIC ARTHRITIS | 274 | ||
| American College of Rheumatology 20%, 50%, and 70% Response Criteria | 274 | ||
| Disease Activity Score | 274 | ||
| Disease Activity Index for Psoriatic Arthritis | 275 | ||
| Composite Psoriatic Disease Activity Index | 276 | ||
| The Psoriatic Arthritis Disease Activity Score and the Arithmetical Mean of Desirability Functions | 276 | ||
| Minimal Disease Activity | 276 | ||
| Psoriatic Arthritis Response Criteria | 276 | ||
| SUMMARY | 277 | ||
| REFERENCES | 277 | ||
| Patient-Reported Outcomes in Axial Spondyloarthritis | 285 | ||
| Key points | 285 | ||
| HISTORY OF AXIAL SPONDYLOARTHRITIS AND ANKYLOSING SPONDYLITIS | 286 | ||
| DIFFERENT PATIENT-REPORTED OUTCOME MEASURES | 286 | ||
| Quality of Life | 286 | ||
| Functional Status and Disability | 288 | ||
| Disease Activity | 288 | ||
| VALIDATION (INCLUDES ROLE OF PATIENT-REPORTED OUTCOME MEASURES IN PREDICTING OUTCOME) | 289 | ||
| Quality of Life | 290 | ||
| Functional Index | 290 | ||
| Disease Activity | 291 | ||
| UTILIZATION OF PATIENT-REPORTED OUTCOMES IN CLINICAL PRACTICE | 295 | ||
| FUTURE DIRECTIONS | 295 | ||
| REFERENCES | 295 | ||
| Patient-Reported Outcome Measures in Systemic Sclerosis (Scleroderma) | 301 | ||
| Key points | 301 | ||
| INTRODUCTION | 302 | ||
| KEY ELEMENTS OF PATIENT-REPORTED OUTCOME MEASUREMENTS IN SYSTEMIC SCLEROSIS | 303 | ||
| General Measures | 303 | ||
| Health Assessment Questionnaire | 303 | ||
| Scleroderma Health Assessment Questionnaire | 305 | ||
| Global assessments | 305 | ||
| Other general measures | 305 | ||
| Specific Organ Measures | 308 | ||
| Hand and upper limb | 308 | ||
| Mouth | 308 | ||
| Gastrointestinal tract | 308 | ||
| Specific Symptom Measures | 309 | ||
| Pain | 309 | ||
| Raynaud’s phenomenon and digital ulcers | 309 | ||
| Dyspnea | 310 | ||
| Pulmonary arterial hypertension | 310 | ||
| Other symptoms | 310 | ||
| Emerging Patient-reported Outcome Measures in Systemic Sclerosis | 310 | ||
| Patient Reported Outcomes Measurement Information System and systemic sclerosis | 310 | ||
| SUMMARY | 311 | ||
| REFERENCES | 311 | ||
| Patient-Reported Outcomes and Fibromyalgia | 317 | ||
| Key points | 317 | ||
| INTRODUCTION | 317 | ||
| DIAGNOSTICS | 318 | ||
| DISEASE MONITORING | 319 | ||
| PHENOTYPING AND FIBROMYALGIA CHARACTERIZATION | 319 | ||
| Pain | 319 | ||
| Comorbidities | 320 | ||
| Affective Vulnerability | 322 | ||
| Beliefs/Attitudes | 323 | ||
| Behavior | 325 | ||
| Environmental/Social | 325 | ||
| CLINICAL TRIALS | 326 | ||
| SUMMARY | 327 | ||
| REFERENCES | 327 | ||
| Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis | 333 | ||
| Key points | 333 | ||
| INTRODUCTION | 334 | ||
| JUVENILE IDIOPATHIC ARTHRITIS | 334 | ||
| DOMAINS OF PATIENT-REPORTED OUTCOME MEASURES | 334 | ||
| Pain | 335 | ||
| Functional Status | 335 | ||
| Quality of Life | 338 | ||
| Medication Side Effects | 338 | ||
| Composite Patient-Reported Outcome Measures Specific to Juvenile Idiopathic Arthritis | 338 | ||
| Use of the Patient Reported Outcomes Measurement Information System Pediatric Measures in Juvenile Idiopathic Arthritis | 339 | ||
| Potential Challenges with Pediatric Patient-Reported Outcomes for Juvenile Idiopathic Arthritis | 339 | ||
| PATIENT-REPORTED OUTCOMES FOR THE MANAGEMENT AND STUDY OF JUVENILE IDIOPATHIC ARTHRITIS | 340 | ||
| Use of Patient-Reported Outcomes in Clinical Care | 340 | ||
| Use of Patient-Reported Outcomes in Various Research Settings | 340 | ||
| SUMMARY | 341 | ||
| REFERENCES | 342 | ||
| The Challenge and Opportunity of Capturing Patient Reported Measures of Rheumatoid Arthritis Disease Activity in Vulnerable ... | 347 | ||
| Key points | 347 | ||
| INTRODUCTION | 347 | ||
| LIMITED ENGLISH PROFICIENCY | 348 | ||
| LIMITED HEALTH LITERACY | 349 | ||
| CAUSAL PATHWAYS LINKING LIMITED ENGLISH PROFICIENCY AND LIMITED HEALTH LITERACY WITH OUTCOMES | 351 | ||
| THE CHALLENGES OF OBTAINING PATIENT-REPORTED OUTCOMES IN PATIENTS WITH LIMITED ENGLISH PROFICIENCY AND LIMITED HEALTH LITER ... | 352 | ||
| Booleen-based Definition | 353 | ||
| Index-based Definition | 353 | ||
| HOW CAN WE BETTER CAPTURE OUR MOST VULNERABLE PATIENTS’ PERSPECTIVE REGARDING THEIR RHEUMATOID ARTHRITIS DISEASE ACTIVITY? | 355 | ||
| SUMMARY | 356 | ||
| REFERENCES | 357 | ||
| Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology | 363 | ||
| Key points | 363 | ||
| INTRODUCTION | 364 | ||
| STRUCTURE, PROCESS, AND OUTCOME: PATIENT-REPORTED OUTCOME MEASURES AS INDICATORS OF HEALTH CARE QUALITY | 364 | ||
| NATIONAL HEALTH SYSTEMS AND PATIENT-REPORTED OUTCOMES MEASUREMENT: EXPERIENCES AND LESSONS LEARNED FROM SWEDEN AND THE UNIT ... | 365 | ||
| Sweden | 365 | ||
| United Kingdom | 366 | ||
| QUALITY REGISTRIES IN RHEUMATOLOGY: THE UNITED STATES EXPERIENCE WITH PATIENT-REPORTED OUTCOMES AS QUALITY MEASURES | 366 | ||
| NATIONAL QUALITY FORUM–ENDORSED QUALITY MEASURES IN RHEUMATOLOGY | 367 | ||
| EXISTING UNITED STATES GUIDANCE FOR USE OF PATIENT-REPORTED OUTCOMES IN PERFORMANCE MEASUREMENT | 368 | ||
| FUTURE DIRECTIONS | 368 | ||
| Challenges | 368 | ||
| Opportunities | 371 | ||
| RECOMMENDATIONS AND FUTURE DIRECTIONS | 371 | ||
| REFERENCES | 372 | ||
| Appendix 1. APPENDIX 1 SYSTEMATIC REVIEW | 374 | ||
| The Promise of Patient-Reported Outcomes Measurement Information System—Turning Theory into Reality | 377 | ||
| Key points | 377 | ||
| NEW SCIENCE OF PATIENT-REPORTED OUTCOMES | 378 | ||
| CONTENT OF PATIENT-REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM MEASURES | 382 | ||
| PEDIATRIC PATIENT-REPORTED OUTCOMES MEASURES | 383 | ||
| PSYCHOMETRIC TESTING OF PATIENT-REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM MEASURES | 385 | ||
| RHEUMATOLOGY APPLICATIONS OF PATIENT-REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM | 387 | ||
| PATIENT-REPORTED OUTCOMES MEASUREMENT INFORMATION SYSTEM AND THE FOOD AND DRUG ADMINISTRATION | 390 | ||
| INTERNATIONAL SCOPE | 390 | ||
| FUTURE OPPORTUNITIES | 391 | ||
| REFERENCES | 392 | ||
| Index | 395 |