Ebook: Statistical Methods for Quality of Life Studies: Design, Measurements and Analysis

On October 16 and 17, 2000, we hosted an international workshop entitled "Statistical Design, Measurement, and Analysis of Health Related Quality of Life." The workshop was held in the beautiful city of Arradon, South Brittany, France with the main goal of fostering an interdisciplinary forum for discussion of theoretical and applied statistical issues arising in studies of health-related quality of life (HRQoL). Included were biostatisticians, psychometricians and public health professionals (e.g., physicians, sociologists, psychologists) active in the study ofHRQoL. In assembling this volume, we invited each conference participant to contribute a paper based on his or her presentation and the ensuing and very interesting discussions that took place in Arradon. All papers were peer-reviewed, by anonymous reviewers, and revised before final editing and acceptance. Although this process was quite time­ consuming, we believe that it greatly improved the volume as a whole, making this book a valuable contribution to the field ofHRQoL research. The volume presents a broad spectrum of papers presented at the Workshop, and thus illustrates the range of current research related to the theory, methods and applications of HRQoL, as well as the interdisciplinary nature ofthis work. Following an introduction written by Sir David Cox, it includes 27 articles organized into the following chapters.

---

The volume presents a broad spectrum of papers which illustrates a range of current research related to the theory, methods and applications of health related quality of life (HRQoL) as well as the interdisciplinary nature of this work.

---

The volume presents a broad spectrum of papers which illustrates a range of current research related to the theory, methods and applications of health related quality of life (HRQoL) as well as the interdisciplinary nature of this work.
Content:
Front Matter....Pages i-xvi
Front Matter....Pages 1-1
Introduction....Pages 3-5
Front Matter....Pages 7-7
Regulatory Aspects of Quality of Life....Pages 9-19
Biases in the Retrospective Calculation of Reliability and Responsiveness from Longitudinal Studies....Pages 21-31
Application of the Multiattribute Utility Theory to the Development of a Preference-Based Health-Related Quality of Life Instrument....Pages 33-50
Strategy and Methodology for Choice of Items in Psychometric Measurement: Designing a Quality of Life Instrument for Hip and Knee Osteoarthritis....Pages 51-61
Conception, Development and Validation of Instruments for Quality of Life Assessment: An Overview....Pages 63-70
Methodological Issues in the Analysis of Quality of Life Data in Clinical Trials: Illustrations from the National Surgical Adjuvant Breast and Bowel Project (NSABP) Breast Cancer Prevention Trial....Pages 71-85
Disease-Specific Versus Generic Measurement of Health-Related Quality of Life in Cross-Sectional and Longitudinal Studies: an Inpatient Investigation of the SF-36 and Four Disease-Specific Instruments....Pages 87-99
Front Matter....Pages 101-101
Analyzing Longitudinal Health-Related Quality of Life Data: Missing Data and Imputation Methods....Pages 103-112
Comparison of Treatments with Multiple Outcomes....Pages 113-128
The Use of Soft Endpoints in Clinical Trials: The Search for Clinical Significance....Pages 129-140
Front Matter....Pages 141-141
Parametric and Nonparametric Item Response Theory Models in Health Related Quality of Life Measurement....Pages 143-154
Questionnaire Reliability Under the Rasch Model....Pages 155-168
Item Response Theory (IRT): Applications in Quality of Life Measurement, Analysis and Interpretation....Pages 169-185
Graphical Rasch Models....Pages 187-203
Front Matter....Pages 205-205
Semi-Markov Models for Quality of Life Data with Censoring....Pages 207-218
A Model Relating Quality of Life to Latent Health Status and Survival....Pages 219-230
Applying Survival Data Methodology to Analyze Longitudinal Quality of Life Data....Pages 231-243
Latent Class Models to Describe Changes Over Time: A Case Study....Pages 245-259
Front Matter....Pages 261-261
Prevalence Analysis of Recurrent and Transient Health States in Quality of Life Studies....Pages 263-274
Front Matter....Pages 261-261
Measures of Quality Adjusted Life and Quality of Life Deficiency: Statistical Perspectives....Pages 275-286
Quality-Adjusted Survival Analysis in Cancer Clinical Trials....Pages 287-300
Front Matter....Pages 301-301
Handling of Missing Data....Pages 303-305
Guidelines for Administration of Self-Reported Health-Related Quality of Questionnaires: How to Minimize Avoidable Missing Data?....Pages 307-308
Joint Modeling of Survival and Nonignorable Missing Longitudinal Quality-of-Life Data....Pages 309-322
Multiple Imputation for Non-Random Missing Data in Longitudinal Studies of Health-Related Quality of Life....Pages 323-337
Strategies to Fit Pattern-Mixture Models....Pages 339-351
Analysis of Longitudinal Quality of Life Data with Informative Dropout....Pages 353-364

---

The volume presents a broad spectrum of papers which illustrates a range of current research related to the theory, methods and applications of health related quality of life (HRQoL) as well as the interdisciplinary nature of this work.
Content:
Front Matter....Pages i-xvi
Front Matter....Pages 1-1
Introduction....Pages 3-5
Front Matter....Pages 7-7
Regulatory Aspects of Quality of Life....Pages 9-19
Biases in the Retrospective Calculation of Reliability and Responsiveness from Longitudinal Studies....Pages 21-31
Application of the Multiattribute Utility Theory to the Development of a Preference-Based Health-Related Quality of Life Instrument....Pages 33-50
Strategy and Methodology for Choice of Items in Psychometric Measurement: Designing a Quality of Life Instrument for Hip and Knee Osteoarthritis....Pages 51-61
Conception, Development and Validation of Instruments for Quality of Life Assessment: An Overview....Pages 63-70
Methodological Issues in the Analysis of Quality of Life Data in Clinical Trials: Illustrations from the National Surgical Adjuvant Breast and Bowel Project (NSABP) Breast Cancer Prevention Trial....Pages 71-85
Disease-Specific Versus Generic Measurement of Health-Related Quality of Life in Cross-Sectional and Longitudinal Studies: an Inpatient Investigation of the SF-36 and Four Disease-Specific Instruments....Pages 87-99
Front Matter....Pages 101-101
Analyzing Longitudinal Health-Related Quality of Life Data: Missing Data and Imputation Methods....Pages 103-112
Comparison of Treatments with Multiple Outcomes....Pages 113-128
The Use of Soft Endpoints in Clinical Trials: The Search for Clinical Significance....Pages 129-140
Front Matter....Pages 141-141
Parametric and Nonparametric Item Response Theory Models in Health Related Quality of Life Measurement....Pages 143-154
Questionnaire Reliability Under the Rasch Model....Pages 155-168
Item Response Theory (IRT): Applications in Quality of Life Measurement, Analysis and Interpretation....Pages 169-185
Graphical Rasch Models....Pages 187-203
Front Matter....Pages 205-205
Semi-Markov Models for Quality of Life Data with Censoring....Pages 207-218
A Model Relating Quality of Life to Latent Health Status and Survival....Pages 219-230
Applying Survival Data Methodology to Analyze Longitudinal Quality of Life Data....Pages 231-243
Latent Class Models to Describe Changes Over Time: A Case Study....Pages 245-259
Front Matter....Pages 261-261
Prevalence Analysis of Recurrent and Transient Health States in Quality of Life Studies....Pages 263-274
Front Matter....Pages 261-261
Measures of Quality Adjusted Life and Quality of Life Deficiency: Statistical Perspectives....Pages 275-286
Quality-Adjusted Survival Analysis in Cancer Clinical Trials....Pages 287-300
Front Matter....Pages 301-301
Handling of Missing Data....Pages 303-305
Guidelines for Administration of Self-Reported Health-Related Quality of Questionnaires: How to Minimize Avoidable Missing Data?....Pages 307-308
Joint Modeling of Survival and Nonignorable Missing Longitudinal Quality-of-Life Data....Pages 309-322
Multiple Imputation for Non-Random Missing Data in Longitudinal Studies of Health-Related Quality of Life....Pages 323-337
Strategies to Fit Pattern-Mixture Models....Pages 339-351
Analysis of Longitudinal Quality of Life Data with Informative Dropout....Pages 353-364
....