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Tables of Contents for Measuring Disease
Chapter/Section Title
Page #
Page Count
Preface
xiii
Acknowledgements
xvi
List of Abbreviations
xvii
Health-Related Quality of Life: Conceptual Meaning, Use and Measurement
1
22
Background: the `quality of life'
1
1
What is quality of life and health-related quality of life?
2
5
Health-related quality of life and health
7
2
Quality of life assessment and research on health care outcomes
9
2
Utility assessments and quality of life assessment
11
2
Who should rate quality of life?
13
1
Patients' preferences
14
2
Disease-specific, domain-specific and generic measurement scales
16
3
Methodological issues
19
4
Cancers
23
46
The importance of measuring the quality of life of cancer patients
23
1
What has been measured in studies of the quality of life of cancer patients?
23
1
What should be measured?
24
1
Recommended measurement scales
24
1
Review articles on quality of life measurement and cancer
25
1
The domains of measurement
25
5
The measurement scales
30
1
Scales measuring physical functioning, pain and symptoms
30
1
Functional status scales used with cancer patients
30
1
The Karnofsky Performance Index (KPI)
30
3
Other versions of the Karnofsky Scale
33
1
The WHO Functional Scale
33
1
The Zubrod Scale (or the Eastern Cooperative Oncology Group Performance Status Rating Scale: ECOG PSR)
33
1
Pain scales
34
1
The McGill Pain Questionnaire (MPQ)
34
1
Other symptom scales
35
1
Symptom Distress Scale
35
1
Lasry Sexual Functioning Scale for Breast Cancer Patients
36
1
Summary of other symptom scales
36
1
McGill Nausea Questionnaire (MNQ)
36
1
The WHO Symptom Checklist
37
1
Medical Research Council (MRC) UK Scale
37
1
The Qualitator
37
1
Disease-specific quality of life scales
37
1
EORTC Modular Approach
37
5
Rotterdam Symptom Checklist
42
2
Functional Living Index---Cancer (FLIC)
44
2
Functional Living Index---Emesis (FLIE)
46
1
Cancer Inventory of Problem Situations (CIPS) and the Cancer Rehabilitation Evaluation System (CARES)
47
2
Visual Analogue Scales (VASs)
49
1
Spitzer Quality of Life (QL) Index
49
3
Linear Analogue Self-Assessment (LASA) Scale
52
2
Ontario Cancer Institute/Royal Marsden LASA Scale
54
1
Padilla Quality of Life (QL) Scale and variants, including the Multidimensional Quality of Life Scale--Cancer (MQOLS-CA)
55
2
Holmes and Dickerson
57
1
Global Quality of Life Scale (Coates)
57
1
Quality of Life Index
58
1
VAS for bone marrow transplant patients
59
1
Other scales
59
2
Functional assessment of cancer therapy--Lung Quality of Life Instrument (FACT-L)
61
Breast Cancer Chemotherapy Questionnaire (BCCQ)
60
1
European Neuroblastoma Study Group Quality of Life Assessment Form--Children (QLAF-C)
61
1
Brief details of other scales
62
1
Cancer Leukaemia Group B Studies (CALGB)
62
1
Ability Index
62
1
Burge Quality of Life Severity Scale
63
1
Anamnestic Comparative Self-Assessment (ACSA)
63
1
World Health Organization Quality of Life Assessment Instrument (WHOQOL)
63
1
Time Without Symptoms and Toxicity (TWiST)
64
1
Palliative care
64
1
Support Team Assessment Schedule (STAS)
65
1
McGill Quality of Life Questionnaire (MQOL)
66
2
Conclusion
68
1
Psychiatric Conditions and Psychological Morbidity
69
94
Quality of life research and psychiatric and psychological morbidity
69
1
Measuring quality of life in institutions
69
1
Community indicators of quality of life
70
1
Measuring quality of life in individuals: the domains of measurement
71
3
Subjective accounts and the value of patients' ratings
74
1
The Measurement Scales
74
1
Symptom scales
74
1
Background
74
4
Symptom questionnaires
78
1
Hopkins Symptom Checklist (SCL) and the Symptom Checklist-90
78
1
Brief Symptom Inventory (BSI)
79
1
Symptom Rating Test (SRT)
80
1
Center for Epidemiological Studies Depression Scale (CES-D)
81
1
Rand Depression Screener
82
2
Hospital Anxiety and Depression Scale (HADS)
84
1
Goldberg's General Health Questionnaire (GHQ)
85
2
Beck Depression Inventory (BDI)
87
2
Hamilton Rating Scale for Depression
89
2
Zung Self-rating Depression Scale
91
1
Quality of Life in Depression Scale (QLDS)
92
1
State-Trait Anxiety Inventory (STAI)
93
2
Profile of Mood States (POMS)
95
2
Scales for children
97
1
Conclusion to Part I
98
1
Quality of life instruments
98
1
Condition-specific quality of life scales
98
1
Quality of Life Scale (QLS)
98
2
Lehman Quality of Life Interview
100
2
Variations
102
1
Lancashire Quality of Life Profile
103
2
SmithKline Beecham Quality of Life Scale (SBQOL)
105
1
Oregon Quality of Life Self-Report Questionnaire and semi-structured interview rating version
106
2
Wisconsin Quality of Life Index for Mental health (W-QLI)
108
3
Index of Health-Related Quality of Life
111
2
Health of the Nation Outcome Scales for Severe Mental Illness (HONOS-SMI)
113
1
Team for the Assessment of Psychiatric Services (TAPS) Measures
114
3
General Well-Being Schedule (GWBS)
117
1
Scales for assessing needs
118
1
Key Informant Survey Scales
119
1
MRC Needs for Care Assessment
120
3
Camberwell Assessment of Need (CAN)
123
2
Services Needed, Available, Planned, Offered, Rendered Instrument
125
1
Patient attitude scales
126
1
Social Problem Questionnaire
126
1
Client Satisfaction Questionnaire (CSQ)
127
2
Satisfaction with Life Domains Scale
129
1
Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q)
129
1
Conclusion to Part II
130
1
Role functioning and related instruments
131
1
Role functioning, performance and social behaviour scales
131
1
Social Functioning Schedule
132
1
Social Role Performance Schedule (SRPS)
133
1
Social Behaviour Schedule (SBS)
134
2
Rehabilitation Evaluation (REHAB)
136
1
Social Behaviour Assessment Schedule (SBAS)
137
1
WHO Disability Assessment Schedules (WHO-DAS)--Psychiatric
138
2
Global Assessment Scale (GAS)
140
1
Global Assessment of Functioning (GAF) Scale
141
1
Adjustment and adaptation scales for use with psychiatrically and/or physically ill people
141
1
Social Dysfunction Rating Scale
142
1
Structured and Scaled Interview to Assess Maladjustment (SSIAM)
142
2
Vineland Adaptive Behaviour Scale
144
2
Social Adjustment Scale-II (SAS-II) and Self-Report Version
146
1
Katz Adjustment Scales
147
1
Psychosocial Adjustment to Illness Scale (PAIS)
148
1
Global Adjustment to Illness Scale (GAIS)
149
1
Acceptance of Illness Scale
150
1
Reintegration to Normal Living (RNL) Index
150
1
Stress and coping scales for use with psychiatrically and/or physically ill people
151
2
Ways of Coping Scale
153
2
Health and Daily Living Form
155
1
Stress in Life Coping Scale
156
1
COPE
157
1
Control over life
158
1
Rotter's Internal-External Locus of Control Scale
159
1
Multidimensional Health Locus of Control Scales
160
1
Generalized Self-Efficiency Scale (GSES)
161
1
Conclusion to Part III
162
1
Respiratory Conditions
163
26
Quality of life in respiratory disease sufferers
163
1
The domains of measurement
163
5
Measurement scales
168
1
Symptom-specific scales: dyspnoea
168
1
The Fletcher Scale and the MRC Dyspnoea Grade and Respiratory Symptoms Questionnaire
169
2
American Thoracic Society Respiratory Questionnaire and Grade of Breathlessness Scale
171
1
Horsley Respiratory Symptoms Questionnaire
171
1
American Lung Association Severity of Disability (COAD)
172
1
Feinstein's Index of Dyspnoea
172
1
Severity of Symptoms Visual Analogue Scale (VAS)
173
1
Oxygen-Cost Diagram
173
1
The 6- and 12-Minute Walking Tests and Stair Climbing
174
1
Borg Ratio of Perceived Exertion
174
1
Mahler Baseline and Transition Dyspnoea Index
175
1
Disease-specific quality of life measures
176
1
Quality of life assessment in COPD/COAD patients: disease-specific scales
176
1
Guyatt's McMaster Chronic Respiratory Questionnaire (CRQ)
176
3
St George's Respiratory Questionnaire (SGRQ)
179
1
Chronic Disease Assessment Tool (CDAT)
180
1
Breathing Problems Questionnaire (BPQ)
180
2
Quality of life assessment in asthma patients: disease-specific scales
182
1
Living with Asthma Questionnaire
182
1
Outcome Measures in Ambulatory Care (Asthma and Diabetes) (OMAC)
183
1
Asthma Quality of Life Questionnaire
184
2
Asthma Symptom Checklist
186
1
Summary of other scales which await full psychometric testing
187
1
Asthma Self-efficacy Scale
187
1
Attitudes to Asthma Scale
187
1
Life Activities Questionnaire for Adult Asthma (LAQAA)
188
1
Conclusion
188
1
Neurological Conditions
189
35
Measuring health-related quality of life in neurology
189
1
Cerebrovascular accident (CVA/stroke)
189
1
The domains of measurement
190
3
Measurement scales
193
1
Stroke scales
193
1
Rankin Handicap Scale
193
1
National Institute of Health (NIH) Stroke Scale
194
1
Canadian Neurological Scale (CNS)
195
1
Hemispheric Stroke Scale
195
1
Disease-specific measures of quality of life: functional ability
196
1
Barthel Index
196
2
Modifications of the Barthel Index
198
1
Granger's Modified Barthel Index
198
1
Functional Independence Measure (FIM) and Functional Assessment Measure (FAM)
198
1
Gompertz's Modified Barthel Index
199
1
Nottingham Extended Activities of Daily Living Questionnaire
199
1
Frenchay Activities Index
200
1
Rivermead Mobility Index (RMI)
201
1
Disease-specific measures of quality of life: stroke
202
1
Kudos Battery for Stroke Patients
202
1
London Handicap Scale
202
1
Epilepsies
203
1
The domains of measurement
204
1
What instruments have been used?
204
3
Measurement scales
207
1
A severity measurement scale
207
1
Seizure Severity Scale
207
1
Disease-specific quality of life scales: epilepsy
208
1
Washington Psychosocial Seizure Inventory (WPSI)
208
1
Epilepsy Surgery Inventory (ESI-55)
209
2
Katz Adjustment Scales (revised for use with epilepsy)
211
1
Health-Related Quality of Life Model
212
1
General tests of neurophysiological functioning
212
1
Trail-Making Test
213
1
Wechsler Scales
213
1
Wechsler Memory Scale (WMS)
213
1
Wechsler Adult Intelligence Scale (WAIS)
214
1
Scales for children
215
1
Tests for cognitive impairment in elderly people
216
1
Abbreviated Mental Test Score (AMTS)
216
1
Mini Mental State Examination (MMSE)
217
1
Mental Status Questionnaire (MSQ)
218
1
Older Americans' Resources and Services Schedule (OARS) mental health measures
219
1
Brief Cognitive Functioning Scale (SIP sub-scale)
220
1
Geriatric Mental State (GMS) and Comprehensive Assessment and Referral Evaluation (CARE)
221
1
Conclusion
222
2
Rheumatological Conditions
224
23
Quality of life in people with joint disorders
224
1
The domains of measurement
224
5
The measurement scales
229
1
Disease severity and functional classifications
229
1
Disease-specific scales: physical functioning
230
1
Stanford Arthritis Center Health Assessment Questionnaire (HAQ)
230
3
Arthritis Impact Measurement Scales (AIMS)
233
2
Functional Status Index (FSI)
235
2
Western Ontario and McMaster Universities Arthritis Index (WOMAC)
237
1
Office of Population Censuses and Surveys (OPCS) Disability Scale
238
2
Rheumatoid Arhritis (RA) Impact on the Homemaker Questionnaire
240
1
Broader disease-specific quality of life scales
241
1
MACTAR (McMaster-Toronto Arthritis) Patient Function Preference Questionnaire
241
1
Hornquist's Quality of Life Status and Change
242
1
Rand Joint Problems Battery
243
2
Summaries of other scales
245
1
Arthritis Helplessness Index (AHI)
245
1
EURIDISS (European Research on Incapacitating Diseases and Social Support)
246
1
Conclusion
246
1
Cardiovascular Diseases
247
28
Heart disease
247
1
Trends in measuring quality of life in people with heart disease
247
1
Most and least frequently used indicators
248
1
What should be measured?
248
1
The domains of measurement
249
6
The measurement scales
255
1
Categorizations and measures of physical activity
255
1
New York Heart Association (NYHA) Functional Classification Scale
255
1
Olsson Ranking Scale
256
1
Canadian Cardiovascular Society (CCS) Functional Classification for Angina Pectoris
256
1
Specific Activity Scale (SAS)
257
1
Ranking Handicap Scale
258
1
Symptom questionnaires
258
1
Fletcher Questionnaire and the Rose (WHO) Questionnaires: The London School of Hygiene Dyspnoea Questionnaire and Cardiovascular Questionnaire (angina of effort)
258
3
Feinstein's Index of Dyspnoea
261
1
Ratio Property Scale
261
1
Disease-specific quality of life scales: heart disease
261
1
Rand Congestive Heart Failure (Shortness of Breath/Enlarged Heart/Heart Failure) Battery and Rand Chest Pain (Angina) Battery
261
2
Guyatt's Chronic Heart Failure Questionnaire (CHQ)
263
1
Seattle Angina Questionnaire (SAQ)
264
2
Minnesota Living with Heart Failure (LIhFE) Questionnaire
266
1
Quality of Life in heart failure Questionnaire (QLQ-CHF)
266
1
Ferrans and Powers' Quality of Life Index (CARDIAC)
267
1
Rehabilitation Questionnaire
268
1
Circulatory disease
268
1
Trends in measuring quality of life in people with circulatory disease: hypertension
268
1
What should be measured?
269
1
Disease-specific quality of life scales: hypertension
270
1
Palmer's Symptom Checklist and Battery
270
1
Bulpitt's Hypertension Questionnaire and Batteries
270
2
Quality of Life Impairment Scale - Hypertension
272
1
Rand Health Insurance Study (HIS) Blood Pressure Battery
272
1
Conclusion
273
2
Other Disease- and Condition-Specific Scales
275
32
Other developments in the measurement of disease-specific quality of life
275
1
Popular generic measures used to supplement disease-specific scales
276
1
Disease-specific measures of quality of life
277
1
Diabetes
277
1
Outcome Measures in Ambulatory Care (OMAC) (Asthma and Diabetes)
277
1
Diabetes Impact Measurement Scales (DIMS)
278
1
Quality of Life, Status and Change (QLSC)
279
1
Rand Diabetes Mellitus Battery
280
2
Diabetes Quality of Life Measure (DQOL)
282
1
Renal disease
283
1
Functional classification
283
1
The use of generic scales and domain-specific batteries
283
1
Kidney Disease Quality of Life Questionnaire (KDQoLQ)
284
1
Haemodialysis Quality of Life Questionnaire (HQLQ)
285
1
Leicester Uraemic Symptom Scale (LUSS) and Battery
285
1
Quality of Life Assessment
286
1
Bowel diseases
287
1
Inflammatory Bowel Disease Questionnaire (IBIQ)
287
1
Rand Surgical Conditions Battery: haemorrhoids
288
1
Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS)
288
1
Medical Outcomes Study HIV Health Survey 30-Item Form (MOS-HIV)
289
1
HIV Overview of Problems-Evaluation System (HOPES)
290
1
AIDS Health Assessment Questionnaire
291
1
Varicose veins
291
1
Varicose Veins Questionnaire
291
1
Rand Surgical Conditions Battery: Varicose Veins
292
1
Back pain
293
1
Clinical Back Pain Questionnaire
294
1
Children
295
1
Older people
296
2
A popular core (generic) measure for use in disease-specific studies of adults: the Short Form-36 (SF-36)
298
4
Individualized measures of quality of life
302
1
Schedule for the Evaluation of Individual Quality of Life (SEIQoL)
303
2
Patient Generated Index (PGI)
305
2
Appendix: A Selection of Useful Scale Distributors and Addresses
307
6
References
313
77
Index
390