Chapter
2 The development and validation of the Parkinson's Disease Questionnaire and related measures
Important areas of health-related quality of life in PD
Patient-reported outcome measures
The Parkinson's Impact Scale (PIMS)
The Parkinson's Disease Quality of Life Questionnaire (PDQL)
The Parkinson's Disease Questionnaire (PDQ-39)
Cross-cultural validation
Discussion and conclusion
Parkinson’s Disease Quality of Life Questionnaire
3 The Multiple Sclerosis Impact Scale (MSIS-29): Initial development, subsequent revision, lessons learned
Background to the development of the MSIS-29
The MSIS-29: initial development
Subsequent revision of MSIS-29 to form MSIS-29 version 2
Multiple Sclerosis Impact Scale, version 2 (MSIS-29v2)
4 Patient-reported outcome measurement in motor neuron disease/amyotrophic lateral sclerosis – the ALSAQ-40 and ALSAQ-5
Clinical assessment of MND
Generic measures of health status
The ALSAQ-40 disease-specific health status measure
5 Measuring quality of life in progressive supranuclear palsy: The PSP-QoL
Development of the PSP-QoL
The Health-Related Quality of Life questionnaire for Patients with Progressive Supranuclear Palsy (PSP-QoL)
6 Measuring quality of life in multiple system atrophy
The Unified Multiple System Atrophy Rating Scale (UMSARS)
The Multiple System Atrophy Quality of Life Questionnaire (MSA-QOL)
Stage One: Item generation
Stage Two: Scale development and item reduction
Stage 3: Scale evaluation and validation
MSA Quality of Life Questionnaire
7 Health-related quality of life in Huntington's disease
New HRQoL measurement initiatives
The Development of the HD-QoL
Summary and Recommendations
8 Measuring quality of life in dementia
Conceptions of QoL in dementia
Source of data for QoL measurement
Evolution of the field and a view to the future
9 Condition-specific instruments to measure the quality of life (QoL) of children and adolescents with cerebral palsy (CP)
QoL versus health-related QoL
Why are researchers and clinicians interested in QoL?
Measuring QoL for children with CP
Generic versus condition-specific instruments
Child self-report versus parent-proxy report
Condition-specific measures of QoL for children and adolescents with CP DISABKIDS CP disease module
Caregiver priorities and Child Health Index of Life with Disabilities (CPCHILD)
Pediatric QoL Inventory (PedsQL) – CP Module
Cerebral Palsy Quality of Life Questionnaire for Children (CP QoL-Child)
Development of the CP QoL – Child
Thematic analysis and piloting of the CP QoL – Child
Psychometric analysis of the CP QoL – Child
Appendix 1: CP QOL-Child (Proxy)
Appendix 2: CP QOL (Self-report version)
10 Outcome measures for informal carers of individuals with neurodegenerative conditions
Convergent and discriminant validity
Sociodemographic variables
General Health Questionnaire
Convergent and discriminant validity
Sociodemographic variables
Carer-specific instruments
Health status and quality of life
Floor and ceiling effects
11 Translating patient-reported outcome measures (PROMs) for cross-cultural studies
Quality of the translation
Instructions to translators
Reports about the translation process
Rating scales as measurement instruments: basic principles
Traditional psychometric methods for evaluating scales and Classical Test Theory
Modern psychometric methods: Rasch measurement and item response theory
Development of item response theory
Development of Rasch measurement
Item response theory and Rasch measurement: similarities and differences
Why proponents of item response theory favor their approach
Why proponents of Rasch measurement favor their approach
Limitations of new psychometric methods
Evaluation of the RMI using traditional psychometric methods
Evaluation of the RMI using Rasch analysis
Is the RMI to CAMS sample targeting adequate for making judgments about performance of the RMI and measurement of people in the sample with MS?
Has a measurement ruler been constructed successfully? Do the 15 RMI items map out a line on which people's mobility can be located?
Do the 15 RMI items work together to define a single variable?
Does the response to one item directly influence the response to another?
Are locations of the items stable across clinically important groups?
Have the people in the sample been measured successfully?
Are persons in the sample separated along the line defined by the items?
How valid is each person's measurement?
Comparison of results from the two analytic methods
13 A method for imputing missing questionnaire data
14 Individualized quality of life measurement in neurodegenerative disorders
Unique features of neurodegenerative disorders
Clinical features of amyotrophic lateral sclerosis
Clinical features of Parkinson's disease
Clinical features of Alzheimer's disease
Challenges measuring quality of life in neurodegenerative disorders
Uses of quality of life instruments
Quality of life definitions and measurement instruments
Health-related quality of life instruments
Existential quality of life instruments
Disease-specific and domain-specific quality of life instruments
Individualized quality of life instruments
Qualty of life investigations in neurodegenerative disorders
Amyotrophic lateral sclerosis
Impact of the response shift
Quality of Life Measurement in Neurodegenerative and Related Conditions
Disclaimer: Any content in publications that violate the sovereignty, the constitution or regulations of the PRC is not accepted or approved by CNPIEC.