Patient-Reported Outcomes and Experience: Measuring What We Want From PROMs and PREMs

Preface
Acknowledgements
Contents
About the Author
Part IPrinciples
1 Why PROMs and PREMs Matter?
	Introduction
		The Quality Chasm
		Quality Measures
		What Do Health Care Systems Produce?
		Personalised Care
		PROMs and PREMs
		Criteria
	Lessons
	Conclusions
	References
2 History
	Early Pioneers
	PROMs
		Before 1980
		1980s
		1990s
		2000s
	References
3 Terms
	Descriptive Framework
		Questionnaire
		Measure
		Comment
		Readability
		Translations
	Scoring Scheme
		Weight
		Scales
	Conclusions
	References
4 Why PROMs Are Hard: People
	Response Rate
		Case Study—GPPS
		Digital Exclusion
	Innovation Readiness
		Innovativeness Spectrum
		Decision Process
	Change Management
		Behavior Change
		PDSA Cycle
		SMART Criteria
	Conclusions
	References
5 Noise and Complexity
	Noise and Bias
		Types of Noise
		Types of Bias
		Reducing Noise and Bias
	Complexity
		Complexity Theory
		NASSS Framework
	Conclusions
	References
6 Using the Results
	Background
	Analysis
		Roles
		Change
	Dashboard
		Dashboards for Managers
		Case Study
	Statistical Packages
	Validity
		Construct Validation
		Other Types of Validity
	Example
		Publication Check-List
	Conclusions
	References
7 Sharing Data
	What Is Interoperability
		Layers of Interoperability
		Interoperability Standards
		Why Interoperability Is Hard
	HL7 FHIR
		RESTful APIs
	Structured Data
		Use Cases
	FHIR Resources
		Questionnaire
		QuestionnaireResponse
		Relationships with Other Resources
		Workflow
	Coding Schemes
		LOINC
		SNOMED CT
	References
8 Value of Health and Lives
	Death Rates
	Value of a Statistical Life (VSL)
	Preference Measures
	QALY Model
	Load Model
	A Worked Example
	Discussion
	References
Part IIMeasures
9 Patient-Reported Measures
	Core Outcome Sets
	Taxonomy
		Patient and Staff-Reported
		PROMs Domains
		PREMs Domains
		Option Sets
		Table
		Quality of Life
			Health Status
			Personal Wellbeing
			Person-Specific Outcome
			Sleep
			Fatigue
		Individual Care
			Health Confidence
			Self-Care
			Shared Decisions
			Behaviour Change
			Adherence
			Acceptance of Loss
			Community
			Social Determinants
			Social Contact
			Loneliness
			Neighbour Relationships
			Personal Safety
		Care Provided
			Patient Experience
			Service Integration
		Provider Culture
			Privacy
		Innovation
			Digital Confidence
			Product Confidence
			User Satisfaction
			Digital Readiness
			Training
	References
10 Patient Experience
	Background
	Development
		Devising Items
			Scope
			Sourcing Items
			Refining the Items
			Options
		Scoring
		Readability
	Case Study
		Distribution
			Internal Structure
		Validation
			Before and After
			Other Measures
	Service Integration
	Friends and Family Test
	References
11 Health Status
	Background
		SF-36 and SF-12
		EQ-5D
		howRu Health Status Measure
	Case Study 1
		Method
		Distribution of Scores
		Internal Structure
		Validity
	Case Study 2
		Results
			Effect Size
	Correlations
	Comparisons
	Conclusions
	References
12 Wellbeing
	Background
	Subjective Wellbeing
		ONS4
		PWS
	EQ Health and Wellbeing
	Mental Health
		WEMWBS
		ReQoL
		Comparisons
	References
13 Patient-Centred Care
	Patient-Centered Care
		Self-efficacy
		Supported Self-management
		Measures
			Patient Activation Measure (PAM)
			My Health Confidence
			Health Confidence Score (HCS)
			Discussion
		Case Study
		Comparison of Measures
	Shared Decision-Making
		CollaboRATE
		Shared Decisions
	References
14 Individualised Measures
	Background
	Individualised Measures
		MYCaW
		Person-Specific Outcome
	Comparisons
	Conclusions
	References
15 How People Live
	Social Determinants of Health
		Health Index for England
		Social Determinants Measure
	Loneliness and Social Contact
		Loneliness Measures
		Social Contact
		Loneliness
	Case Study—Social Contact
	Discussion
	Length and Readability
	References
16 Innovation Evaluation
	Innovation
	Measures
		Innovation Readiness
		Digital Confidence
		Innovation Process
		Product Satisfaction
		Behaviour Change
		Training
		Digital Competence
		Product Confidence
	Case Study—Digital Readiness in General Practice
	Comparison of Measures
	Conclusions
	References
17 Staff-Reported Measures
	Background
		Quality of Life
			Health Status
			Work Wellbeing
			Person-Specific Outcome
		Individual Care
			Job Confidence
			Assessed Need
		Care Provided
			Service Provided
			Service Integration
			Patient Confidence
		Provider Culture
			Staff Relationships
			Shared Decisions
			Patient Safety
			Staff Safety
			Privacy
		Innovation
			Innovation Readiness
			Innovation Process
			User Satisfaction
			Behaviour Change
			Training
			Digital Competence
			Product Confidence
	References
18 Proxies, Caregivers and Care Home Residents
	Proxies
	Caregivers
		Case Study
	Care Home Residents
	References
Appendix
	Outline placeholder
		LOINC Answers
		SNOMED CT Codes
Index