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Preface
This book is concerned with the assessment of health outcomes from the
patient's perspective. Patients and their families may know the effects of
ill-health and treatment better than anyone, but traditionally little formal
attention has been given to outcomes as patients perceived them. Health care
administrators and bureaucrats are concerned with process - the great
machine of health care proceeds inexorably on. Clinicians have been
concerned primarily with clinical outcomes.
Over the last few decades there has been mounting change. The need to
measure people’s own views regarding the experience of illness and treatment
has been recognised, resulting in a host of outcome measures concerned to
assess patients attitudes, experiences, perceptions, ability to carry out
the activities of daily living, and quality of life in general.
This book is concerned with patient-centred measures. It aims to provide
a perspective for understanding their range and ambitions, and to indicate
the potential that measures of this type have for improving health care. It
reveals how much is being learned about the psychological mechanisms that
mediate quality of life, and the implications for future measures. More
basically, the book introduces skills needed for the selection, appraisal,
use and development of measures of patient-centred outcomes, skills for
measuring health as it is perceived and experienced by patients.
The book shows that we live in exciting times in health outcomes
measurement. The field is expanding rapidly into exciting new areas of
research. These include the way health states are perceived and experienced,
new techniques for developing scientific measures, and tests that may
prevent future health states not merely describe current ones. Hopefully the
book will act as a compass to negotiate these issues and assist the reader
to make effective choices about measurement. Ultimately its intention is to
help healthcare workers gather information from patients so as to make
better healthcare decisions.
The book discusses the background to health outcome measures and their
basis in clinical medicine, health economics, and psychometrics. Questions
that confront practitioners are considered such as the place of single item
global questions and when to use a generic versus a disease-specific
measure. It also provides the reader with a set of criteria for assessing
the adequacy of an instrument and addresses when and how to develop a new
measure.
There is a need to improve the understanding of quality of life measures.
This book aims to de-mystify and clarify issues, to reveal that there is
indeed ‘gold in them their hills’.
Who should read this book?
This book is aimed at those involved in applying, developing, and
researching measures of patient-centered health outcome, be they quality
managers, administrators, and researchers. It is relevant to clinical
medicine, allied health, and community care, to anyone who wishes to
understand and improve health outcomes from the patients’ perspective.
This book aims to give the reader the ability to:
• Explain the aim of patient-centered health outcomes measurement and how
it relates to traditional healthcare measurement
• Understand the range of patient-centered measures, including
health-related quality of life, functional health status, and patient
satisfaction
• Recognise the key role that patients play as active agents in their own
quality of life
• Specify the aim of a health measurement instrument in operational terms
and know why this is important
• Explain what is meant by test validity and how to develop and assess
validity
• Explain the role of test reliability and associated techniques (e.g.
Cronbach’s alpha)
• Explain the relative advantages of measures based on Classical Test
Theory, Rasch Analysis/ Item Response Theory, and single items, in measuring
patient-centred outcomes
• Appreciate the distinctive origins and diverse nature of common
instruments
• Critically assess an instrument
• Commence the development of a new measure for assessing patient-centered
outcomes for a treatment program or population
Measuring Quality of Life in Health provides a comprehensive introduction
for all those interested in the application and use of patient-centred
health outcome measures.
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