Investigating quality of life and communication in Saudi Arabian individuals with progressive ...

344 Pages·2014·5.33 MB·English

Investigating quality of life and
communication in Saudi Arabian
individuals with progressive dysarthria

by
Mashael Faisal Al Saud

2014
Research Department of Language and Communication,
University College London

Submitted in fulfilment for the degree of Doctor of
Philosophy
I, Mashael Faisal Al Saud confirm that the work presented in this
thesis is my own. Where information has been derived from other
sources, I confirm that this has been indicated within the thesis.

__________________________
Mashael Faisal AlSaud

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CONTENTS
CONTENTS ....................................................................................................................................................... 3
LIST OF TABLES ................................................................................................................................................ 6
LIST OF FIGURES .............................................................................................................................................. 8
ACKNOWLEDGEMENTS ................................................................................................................................... 9
ABSTRACT ..................................................................................................................................................... 10
INTRODUCTION AND OVERVIEW .................................................................................................................. 11
1.1 OVERVIEW OF THE RESEARCH ............................................................................................................................ 11
1.2 NEURODEGENERATIVE DISEASE, DYSARTHRIA, AND QOL ........................................................................................ 12
1.2.1 Neurodegenerative disease ............................................................................................................ 12
1.2.2 Progressive Dysarthria .................................................................................................................... 14
1.2.3 Quality of life .................................................................................................................................. 14
1.3 ASSESSMENT TOOLS ........................................................................................................................................ 15
1.3.1 Assessment of Dysarthria ............................................................................................................... 16
1.3.2 Assessment of QoL .......................................................................................................................... 16
1.4 RATIONALE OF THE RESEARCH STUDY ................................................................................................................... 17
1.5 RESEARCH AIMS AND OBJECTIVES ....................................................................................................................... 17
1.6 RESEARCH QUESTIONS ..................................................................................................................................... 19
1.7 RESEARCH METHODOLOGY ............................................................................................................................... 20
1.8 CONTRIBUTION TO KNOWLEDGE ........................................................................................................................ 20
1.9 STRUCTURE OF THE THESIS ................................................................................................................................ 22
CHAPTER 2 - LITERATURE REVIEW ................................................................................................................. 24
2.1 INTRODUCTION ............................................................................................................................................... 24
2.2 NEURODEGENERATIVE DISEASES ........................................................................................................................ 24
2.2.1 Parkinson’s  Disease ........................................................................................................................ 25
2.2.2 Multiple Sclerosis ............................................................................................................................ 27
2.2.3 Amyotrophic Lateral Sclerosis/Motor Neuron Disease ................................................................... 28
2.2.4 Summary ......................................................................................................................................... 30
2.3 COMMUNICATION DISORDERS ASSOCIATED WITH NEURODEGENERATIVE DISEASE ........................................................ 31
2.3.1 Introduction .................................................................................................................................... 31
2.3.2 Dysarthria Assessment ................................................................................................................... 32
2.3.3 Intelligibility .................................................................................................................................... 35
2.3.4 Functional Communication ............................................................................................................. 37
2.3.5 Participation ................................................................................................................................... 38
2.3.6 Phonology and Morphology of Arabic ............................................................................................ 41
2.4 QUALITY OF LIFE AND HEALTH RELATED QUALITY OF LIFE ........................................................................................ 42
2.4.1 Quality of life .................................................................................................................................. 43
2.4.2 Health Related Quality of Life ......................................................................................................... 44
2.4.3 Quality of Life and Neurodegenerative Conditions ......................................................................... 47
2.5 CULTURAL CONSIDERATIONS WHEN ADAPTING AND DEVELOPING ASSESSMENT TOOLS ................................................ 53
2.6 QUALITY OF LIFE ASSESSMENT MEASURE REVIEW ................................................................................................. 56
2.6.1 Generic HRQoL Measures: .............................................................................................................. 58
2.6.2 Individual (Patient-Centred) QoL .................................................................................................... 60
2.6.3 MQoL-SIS ........................................................................................................................................ 61
2.6.4 Qualitative Assessment of QoL ....................................................................................................... 61
2.7 QUALITATIVE RESEARCH ................................................................................................................................... 62
2.8 CAREGIVER BURDEN ........................................................................................................................................ 64
2.9 CONCLUSIONS ................................................................................................................................................ 65
CHAPTER 3 - METHODOLOGY ........................................................................................................................ 67
3.1 INTRODUCTION ............................................................................................................................................... 67
3.2 PHASE ONE – DEVELOPMENT OF INTELLIGIBILITY AND FUNCTIONAL COMMUNICATION MEASURES IN ARABIC ..................... 67
3.2.1 Ethical Issues ................................................................................................................................... 67
3.2.2 Sampling ......................................................................................................................................... 68
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3.2.3 Inclusion Criteria ............................................................................................................................. 69
3.2.4 Data collection ................................................................................................................................ 70
3.2.5 Assessment of Intelligibility ............................................................................................................ 70
3.2.6 Qualitative interviews on functional communication ..................................................................... 76
3.3 PHASE TWO - THE RELATIONSHIP BETWEEN QOL AND COMMUNICATION IN INDIVIDUALS WITH NEURODEGENERATIVE
DISEASE .............................................................................................................................................................. 79
3.3.1 Methodology for the research protocol .......................................................................................... 79
3.3.2 Ethical Issues ................................................................................................................................... 80
3.3.3 Sampling ......................................................................................................................................... 80
3.3.4 Data Collection ............................................................................................................................... 82
3.3.5 Research Protocol ........................................................................................................................... 83
3.3.6 Research Objectives ........................................................................................................................ 87
3.3.7 Variables ......................................................................................................................................... 87
3.3.8 Phase Two: Quantitative Data Analysis .......................................................................................... 87
3.4 SUMMARY ..................................................................................................................................................... 89
CHAPTER 4 - PHASE 1: DEVELOPMENT OF INTELLIGIBILITY AND FUNCTIONAL COMMUNICATION
MEASURES IN ARABIC ................................................................................................................................... 90
4.1 INTRODUCTION ............................................................................................................................................... 90
4.2 DEVELOPMENT OF THE ARABIC ASSESSMENT OF INTELLIGIBILITY OF DYSARTHRIC SPEECH .............................................. 90
4.2.1 Development of the assessment material ...................................................................................... 91
4.2.2 Normal Sample and Piloting of the Arabic assessment of intelligibility of dysarthric speech ........ 92
4.2.3 Data Analysis of the A-AIDS pilot study .......................................................................................... 94
4.3 DEVELOPMENT OF THE ARABIC FUNCTIONAL COMMUNICATION SCALE .................................................................... 103
4.3.1 Semi-structured interviews with people suffering from dysarthria .............................................. 104
4.3.2 Themes emerging from interviews ............................................................................................... 109
4.3.3 Development of the functional communication scale .................................................................. 120
4.3.4 Reviewing, piloting and amending the proposed functional communication scale ..................... 122
4.3.5 Summary ....................................................................................................................................... 125
CHAPTER 5 - THE RELATIONSHIP BETWEEN QOL AND COMMUNICATION IN INDIVIDUALS WITH
NEURODEGENERATIVE DISEASE .................................................................................................................. 126
5.1 INTRODUCTION ............................................................................................................................................. 126
5.2 PROFILE OF PARTICIPANTS .............................................................................................................................. 128
5.3 NORMALITY TESTING ..................................................................................................................................... 131
5.4 CORRELATION ANALYSIS ................................................................................................................................. 131
5.4.1 Testing the relationship between communication, intelligibility and QoL ................................... 131
5.4.2 Type of Neurodegenerative Disease ............................................................................................. 133
5.4.3 Mild versus Moderate to Severe Decrease in intelligbility ............................................................ 136
5.4.4 Patients versus Caregivers Judgements of FCS and ASIP .............................................................. 139
5.5 SEIQOL INDIVIDUAL QUALITY OF LIFE PROFILES .................................................................................................. 142
5.5.1 The Four SEIQoL-DW Participant Profiles ..................................................................................... 142
5.5.2 Identifying the most frequent SEIQoL domains and the range of weights they were given by
participants ............................................................................................................................................... 145
5.6 SUMMARY ................................................................................................................................................... 149
CHAPTER 6 - PHASE 2: THE RELATIONSHIP BETWEEN QOL AND COMMUNICATION IN INDIVIDUALS
WITH NEURODEGENERATIVE DISEASE - QUALITATIVE RESULTS .................................................................. 152
6.1 INTRODUCTION ............................................................................................................................................. 152
6.1.1 Socio-demographic characteristics ............................................................................................... 153
6.1.2 Medical History ............................................................................................................................. 153
6.1.3 Communication and QoL .............................................................................................................. 155
6.2 SEMI-STRUCTURED INTERVIEWS ....................................................................................................................... 155
6.3 QUALITATIVE CONTENT ANALYSIS ..................................................................................................................... 157
6.3.1 Familiarisation: ............................................................................................................................. 157
6.3.2 Identifying a thematic framework: ............................................................................................... 157
6.3.3 Indexing ........................................................................................................................................ 158
6.3.4 Charting ........................................................................................................................................ 161
6.3.5 Mapping and Interpretation ......................................................................................................... 161
6.4 KEY THEMES AND SUBTHEMES ......................................................................................................................... 161
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6.4.1 Emotional and psychological wellbeing ........................................................................................ 161
6.4.2 Desire to maintain identity ........................................................................................................... 163
6.4.3 Physical function ........................................................................................................................... 166
6.4.4 Search for control ......................................................................................................................... 167
6.4.5 Impact of disability on social life .................................................................................................. 169
6.4.6 Importance of family .................................................................................................................... 172
6.4.7 Communication ............................................................................................................................ 174
6.4.8 Faith and spirituality ..................................................................................................................... 176
6.4.9 Perceived QoL ............................................................................................................................... 177
6.4.10 Coping and acceptance ................................................................................................................ 178
6.4.11 Impact of the disease on life ......................................................................................................... 179
6.5 SUMMARY ................................................................................................................................................... 181
CHAPTER 7 - DISCUSSION ............................................................................................................................ 184
7.1 INTRODUCTION ............................................................................................................................................. 184
7.2 EVALUATION OF THE RESEARCH AIMS ............................................................................................................... 184
7.3 GENERAL OBSERVATIONS............................................................................................................................ 185
7.4 DEVELOPMENT OF COMMUNICATION ASSESSMENT MEASURES .......................................................................... 187
7.4.1 Assessment of intelligibility .......................................................................................................... 187
7.4.2 Assessment of Functional Communication ................................................................................... 188
7.4.3 Clinical implications ...................................................................................................................... 189
7.5 QUALITY OF LIFE AND COMMUNICATION ....................................................................................................... 191
7.5.1 Individual Perspectives ................................................................................................................. 195
7.5.2 Clinical implications ...................................................................................................................... 198
7.6 CAREGIVER PERSPECTIVES ........................................................................................................................... 199
7.7 STRENGTHS AND LIMITATIONS ..................................................................................................................... 200
7.7.1 Strengths and Clinical Implications ............................................................................................... 200
7.7.2 Limitations .................................................................................................................................... 200
7.8 FUTURE RESEARCH .................................................................................................................................... 201
7.9 CONCLUSION ............................................................................................................................................ 202
REFERENCES ................................................................................................................................................ 205
APPENDIX 1 – INFORMATION SHEET (ENGLISH VERSION) ........................................................................... 228
APPENDIX 2- CONSENT FORM ..................................................................................................................... 237
APPENDIX 3 – WORD INTELLIGIBILITY LIST IN ARABIC ................................................................................. 239
APPENDIX 4 – TRANSCRIPTION OF WORD LIST ............................................................................................ 242
APPENDIX 5 – SENTENCE INTELLIGIBILITY LIST IN ARABIC ........................................................................... 246
APPENDIX 6 – TRANSLATED SENTENCE LIST ................................................................................................ 255
APPENDIX 7 – JUDGE INSTRUCTIONS FOR INTELLIGIBILLITY ASSESSMENT (SIS AND WIS) ........................... 264
APPENDIX 8 – INTERVIEW SCHEDULE FOR INTERVIEW ON FUCNTIONAL COMMUNICATION ...................... 265
APPENDIX 9 – INTERVIEW SCHEDULE QOL INTERVIEW ................................................................................ 266
APPENDIX 10- STATISTICAL ANALYSIS FOR CHAPTER 4 ................................................................................ 267
APPENDIX 11 – WORD INTELLIGIBILITY SCALE – WORD GROUP PROFILES ................................................... 274
APPENDIX 12 – TRANSCRIPTION KEY ........................................................................................................... 284
APPENDIX 13 – CHARTING FROM THE COMMUNICATION QUALITATIVE ANALYSIS ..................................... 285
APPENDIX 14 - FINAL VERSION OF THE FUNCTIONAL COMMUNICATION SCALE .......................................... 299
APPENDIX 15 - FINAL VERSION OF THE FUNCTIONAL COMMUNICATION SCALE – ENGLISH
TRANSLATION ............................................................................................................................................. 302
APPENDIX 16 – THE AMERICAN SPEECH LANGUAGE AND HEARING ASSOCIATION – FUNCTIONAL
ASSESSMENT FOR COMMUNICATION SKILLS .............................................................................................. 304
APPENDIX 17 – DESCRIPTIVE STATISTICS AND SHAPIRO-WILKS TEST OF NORMALITY ................................. 308
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APPENDIX 18 – STATISTICAL ANALYSIS FOR CHAPTER 5 .............................................................................. 311
APPENDIX 19 – CHARTING OF PART TWO - EXAMPLE .................................................................................. 338
LIST OF TABLES
Table 2-1 - The Arabic consonant inventory ........................................................................................................ 42
Table 2-2 - Thevowels of Arabic ........................................................................................................................... 42
Table 3-1 - Details of the normal sample participating in intelligibility assessment ............................................ 75
Table 3-2 - Interview topic guide – Functional Communication Interview .......................................................... 77
Table 3-3 - Frequency of significant caregiver relationship ................................................................................. 82
Table 3-4 - Schedule for quality of life interviews ................................................................................................ 86
Table 3-5 - Independent and dependent variables used in this study ................................................................. 88
Table 4-1 - Description of the steps taken to develop the A-AIDS ....................................................................... 92
Table 4-2 - Details of the normal sample participating in intelligibility assessment ............................................ 93
Table 4-3 - Demographic and medical history characteristics of the participants ............................................... 94
Table 4-4 - Intraclass Correlation Coefficient for Word Intelligibility of the normal speaking sample ................ 95
Table 4-5 - Intraclass Correlation Coefficient for Sentence Intelligibility of the normal speaking sample .......... 96
Table 4-6 - Interclass correlation coefficient for intra-judge correlation of the WIS ........................................... 97
Table 4-7 - Judge-by-speaker ANOVA results (single word inter-judge) .............................................................. 97
Table 4-8 - Intraclass Correlation Coefficient for inter-judge reliability ............................................................... 98
Table 4-9 - Interclass correlation coefficient for intra-judge correlation of the SIS ............................................. 98
Table 4-10 - Judge-by speaker Chi-square test .................................................................................................... 99
Table 4-11 - Intraclass Correlation Coefficient ..................................................................................................... 99
Table 4-12 - Outline of the stages involved in the development of the Arabic FCS ........................................... 104
Table 4-13 - Interview topic guide ..................................................................................................................... 107
Table 4-14 - Index used to chart interviews (Development of the Functional Communication Scale) .............. 108
Table 4-15 - Number of mentions of communication activities......................................................................... 110
Table 4-16 - Number of mentions of communication of basic needs ................................................................ 114
Table 4-17 - Number of mentions of feelings and emotions ............................................................................. 116
Table 4-18 - Number of mentions of communication environment .................................................................. 117
Table 4-19 - Number of mentions of communication partner ........................................................................... 118
Table 4-20 - Rating Key for the FCS .................................................................................................................... 121
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Table 4-21 - Details of Participants in FCS Pilot Study ........................................................................................ 123
Table 4-22 - Cronbach’s  alpha  coefficient  for  the  internal  consistency  and  reliability  of  the  FCS  developed ... 124
Table 5-1 - Demographic characteristics of 34 patients with neurodegenerative disease ................................ 129
Table 5-2 - Patients’  disease  duration,  dysarthria  severity,  communication,  intelligibility  and  QoL ................ 130
Table 5-3 - Spearman  correlations  between  patients’  measures  of  communication  and measures of QoL ..... 132
Table 5-4 - Spearman correlations for functional communication, intelligibility, and QoL by disease group ... 135
Table 5-5 - Spearman correlations among functional communication, intelligibility, and QoL by severity
of intelligibility disorder based on WIS .............................................................................................................. 138
Table 5-6 - Intraclass Correlation Coefficient for ASIP ratings ........................................................................... 140
Table 5-7 - Intraclass Correlation Coefficient ..................................................................................................... 141
Table 5-8 - Frequency and weight ranking of mild decrease in WIS score SEIQoL-DW domains (n = 25) ......... 146
Table 5-9 - Frequency and weight ranking of moderate-severe decrease in WIS score SEIQoL domains (n
= 8) ..................................................................................................................................................................... 148
Table 6-1- Sociodemographic data by severity of dysarthria (N = 34) ............................................................... 153
Table 6-2 - Medical data by severity of dysarthria (N = 34) ............................................................................... 154
Table 6-3 - Interview of QoL and communication topic guide ........................................................................... 156
Table 6-4 - Number of mentions for the desire to maintain identity................................................................. 163
Table 6-5 - Number of mentions for physical disability ..................................................................................... 166
Table 6-6 - Number of mentions for search for control ..................................................................................... 167
Table 6-7 - Number of mentions for social life ................................................................................................... 169
Table 6-8 - Number of mentions for family ........................................................................................................ 172
Table 6-9 - Number of mentions for communication ........................................................................................ 174
Table 6-10 - Number mentions for faith and spirituality ................................................................................... 177
Table 6-11 - Definition of themes related to QoL and communication ............................................................. 183

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LIST OF FIGURES
Figure 4-1– Percentage of word groups correctly heard by the five judges ...................................................... 100
Figure 4-2-Communication difficulty hierarchy ................................................................................................. 121
Figure 5-1- Comparison  of  patients’  and  caregiver’s  judgment  of  total  A-SIP. .................................................. 139
Figure 5-2 Comparison of pateints' and caregivers' jugement of functional communication ........................... 141
Figure 5-3 Profile 1- SEIQoL-DW levels of importance and weightings.............................................................. 143
Figure 5-4 Profile 2- SEIQoL-DW levels of importance and weightings.............................................................. 143
Figure 5-5- Profile 3- SEIQoL-DW levels of importance and weightings ............................................................ 144
Figure 5-6 - Profile 4- SEIQoL-DW levels of importance and weightings .......................................................... 145
Figure 5-7 Frequency and weight ranking of mild decrease in intelligibility SEIQoL domains (n = 25) .............. 147
Figure 5-8- Frequency and weight ranking of moderate-severe decrease in intelligibility SEIQoL domains
(n = 8) ................................................................................................................................................................. 149
Figure 6-1 - Development of the interview index using interview guide and notes .......................................... 160
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ACKNOWLEDGEMENTS
It would not have been possible for me to write this doctoral thesis without the help and
support of the kind people around me, only some of whom it is possible to give
particular mention to.
I would like to thank my two supervisors: Dr. Steven Bloch and Professor Jane Maxim,
who stood by me throughout this study. This work would not have turned out the way it
has without your continuous encouragement and advice. I have been fortunate to have
had this opportunity to work with you and cherish every moment of our interaction.
This work would not have been possible without the support of my family; my parents
for believing in me and always pushing me forward to achieve more, my brothers for
never doubting me and for being there for me. I would especially like to thank my sister
Sarah, who has always been there to support me every step of this journey. Being part
of her small family here in London made me feel like I never left home.
I would also like to thank Miss Maysoon Mutabagani, the best friend anyone could
have. Going through the PhD process together allowed us to both share the good
moments and to lean on each other when it got difficult.
I have to also thank my scholarship sponsor, King Faisal Specialist Hospital. Without
their support this would not have been possible.
Finally, I would like to thank the speech language pathologists who helped me
throughout the data collection and analysis process. Ms. Yara Al-Jahlan, Ms. Reem
AlSaud, Ms. Samira Al-Somali, Ms. Sheema AlSudairi, and the final year students at
King Saud University, Riyadh, Saudi Arabia. I am also grateful to the speech language
pathology staff at King Faisal Specialist Hospital, Riyadh, Saudi Arabia, for allowing me
to use their facilities throughout the data collection process.
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ABSTRACT
One functional factor commonly affected by neurodegenerative diseases is
communication. Many people with neurodegenerative disease experience a
progressive motor speech disorder: dysarthria. It is known that communication is
essential for full social participation but there is limited evidence on the role it plays in
quality of life (QoL). The aim of this thesis is to explore the QoL of Saudi Arabian
individuals with progressive dysarthria associated with neurodegenerative disease.
The thesis includes the development of new intelligibility and functional communication
measures for use with an Arabic speaking population. It also explores the relationship
between QoL and communication for individuals with neurodegenerative disease.
Qualitative and quantitative research methodologies were used. Research participants
were recruited from a specialist hospital in Riyadh, Saudi Arabia. 16 people
participated in the first part and 34 in the second, all of whom had been diagnosed with
neurodegenerative disease associated with different severities of progressive
dysarthria. In addition, caregivers participated to explore the difference between their
perceptions of participants’   QoL   and   functional   communication   and   that   of   the  
participants themselves.
It was established that QoL, as measured by the ASIP, showed the most frequent
relationship with functional measures of communication. Additionally, qualitative
analysis of interviews highlighted themes related to physical, psychological, social, and
environmental factors. Communication was mainly discussed in relation to changes
and restrictions in participation and interaction. Finally caregiver and patient
perspectives  were  found  to  be  similar  when  asked  to  rate  the  participants’  QoL  and  
functional communication.
Although this research is not without limitations as reflected by some of the
methodologies used as well as variable population features within the disease groups,
it is an important first step in looking at a Saudi Arabian population with progressive
dysarthria and exploring methods for assessing intelligibility, functional communication
and the relationship between communication and QoL.
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