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Development and Validation of a Self-Report Symptom Inventory to Assess the Severity of Oral-Pharyngeal Dysphagia

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Development and Validation of a Self-Report Symptom Inventory to Assess the Severity of Oral-Pharyngeal Dysphagia UNIVERSITY OF NEW SOUTH WALES Thesis/Project Report Sheet Surname or Family name: WALLACE First name: KAREN Other name/s: LEE Abbreviation for degree as given in the University calendar: MSc. School: St George Clinical School Faculty: Medicine Development and validation of a self-report symptom inventory to assess the severity of oral-pharyngeal dysphagia. Abstract 350 words maximum: Background/Aims: Objective assessment of symptonnatic change in the severity of oral-pharyngeal dysphagia is hampered by the lack of a valid and reliable means of measuring symptom severity. The aim of this thesis was to develop and evaluate the validity and reliability of a self-report inventory to measure symptomatic severity of oral-pharyngeal dysphagia. Methods: Test-retest reliability; face-, content- and construct-validity of a prototype, visual analogue scale, inventory was assessed in 45 patients who had stable, neuromyogenic dysphagia. Discriminant validity was estimated in 11 patients with Zenker's diverticulum who underwent surgery. Results: Normalised scores varied over time by -0.5% ± 17.6% (95% 01: -9.2% - 8.2%). Factor analysis identified a single factor (dysphagia), to which 18 of 19 questions contributed significantly, which accounted for 56% of total variance (p < 0.0001). Following deletion of 2 questions with poor face validity and patient compliance, this proportion rose to 59%; mean test-retest change was -2% (95% 01: -11% - 7%); and total score correlated highly with an independent global assessment severity score (r = 0.7; p < 0.0001). A mean 70% reduction in score (p < 0.0001) was observed following surgery in patients with Zenkers. Conclusion: Applied to patients with neuromyogenic dysphagia the 17 question inventory demonstrates: strong test-retest reliability over two weeks as well as face, content, and construct validity. Discriminant validity (responsiveness) has been demonstrated in a population with a correctable, structural cricopharyngeal disorder. Responsiveness of the instrument to treatment in neuromyogenic dysphagia remains to be quantified. Declaration relating to disposition of project report/thesis I am fully aware of the policy of the University relating to the retention and use of higher degree project reports and theses, namely that the University retains the copies submitted for examination and is free to allow them to be consulted or borrowed. Subject to the provisions of the Copyright Act 1968, the University may issue a project report or thesis in whole or in part, in photostat or microfilm or other copying medium. 1 also authorise the publication by University Microfilms of a 350 word abstract in Dissertation Abstracts international (applicable to doctorates only). Signature Witness Date The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction for a period of up to 2 years must be made in writing to the Registrar. Requests for a longer period of restriction may be considered in exceptional circumstances if accompanied by a letter of support from the Supervisor or Head of School. Such requests must be submitted with the thesis/project report. FOR OFFICE USE ONLY Date of completion1 o of trequirement requirementss fo TOr Award amm "ir^^ cii-O sputv Principal Development and Validation of a Self-report Symptom Inventory to Assess the Severity of Oral-pharyngeal Dysphagia. Ms Karen Wallace Master of Science 2000 UNSW ? 2 MAY 2001 LIBRARY Dedication To all the people who have walked with me along my path and to those who are yet to come. ~ Life - Author Unknown Experiences have continued to highlight and enrich my life. Encounters with different people have allowed me to refine and shape my conception of the world and myself, and have helped me to remain open to ongoing changes occurring within and without me. By reflecting and re-examirung my own attitudes and beliefs, I can see more clearly who I am and where I stand Table of Contents DEDICATION I TABLE OF CONTENTS II CERTIFICATE OF ORIGINALITY V ACKNOWLEDGMENTS VI PUBLICATION ARISING FROM THIS THESIS VII ABSTRACT VIII CHAPTER 1 BACKGROUND 1 1.1 RATIONALE OR NEED FOR MEASUREMENT TOOLS IN DYSPHAGIA RESEARCH 1 1.1.1 The magnitude and cost of the oropharyngeal dysphagia I 1.1.2 Why is it important to measure severity of dysphagia? 2 1.2 PROJECT AIM 4 1.3 AVAILABLE MEASUREMENT TOOLS TO QUANTIFY DYSPHAGIA SEVERITY 5 1.3.1 Measures of efficacy and function 5 L3.I.1 Videofluoroscopy 5 1.3.1.2 Videomanometry 6 1.3.1.3 Scintigraphy 7 1.3.2 Measures of symptom severity 7 1.3.2.1 Clinician's assessnoent - history and examination 7 1.3.2.2 Symptom questionnaires and inventories 9 1.4 EXPECTATIONS OF A NEW SWALLOW INVENTORY 16 1.4.1 Summary 18 1.5 MECHANISM OF ORAL-PHARYNGEAL DYSPHAGIA AND RELEVANCE TO SWALLOW INVENTORY DESIGN 20 1.5.1 Introduction 20 1.5.2 Mechanism ofNomial & Ahiormal Swallow 20 1.5.3 Disease Aetiology 23 1.6 TREATMENTS, OUTCOMES AND RESPONSIVENESS TO THERAPY 24 1.6.1 Importance of natural history 24 1.7 SUMMARY 26 CHAPTER 2 METHODS 28 2.1 INTRODUCTION - FUNDAMENTALS OF INVENTORY OR QUESTIONNAIRE DESIGN 28 2.2 THE INVENTORY 30 2.3 PATIENTS AND CONTROLS 32 2.4 DATA COLLECTION 33 2.5 ANALYTICAL METHODS 34 2.5.1 Test-retest Reliability 35 2.5.2 Validity Measures 36 2.5.2.1 FACE VALIDITY 36 2.5.2.2 CONTENT VALIDITY 37 2.5.2.3 CONSTRUCT VALIDITY 39 2.5.2.4 DISCRIMINANT VALIDITY 39 CHAPTER 3 RESULTS 3.1 INVENTORY DEMOGRAPHICS 41 3.2 RELIABILITY AND VALIDITY TESTING 41 3.2.1 Predictive validity 41 3.2.2 Test-retest Reliability 42 3.2.3 Face validity 42 3.2.4 Content Validity 43 3.2.5. Construct Validity 43 3.2.6 Discriminant Validity 44 3.3 PERFORMANCE OF THE MODIFIED INVENTORY 44 CHAPTER 4 DISCUSSION, CONCLUSIONS AND IMPLICATIONS 46 4.1 DISCUSSION AND CONCLUSIONS 46 4.2 IMPLICATIONS FOR FUTURE RESEARCH 52 III REFERENCES: 53 LIST OF TABLES: TABLE 1: CURRENT LITERATURE-CRITICAL EVALUATION 65 TABLE 2: MECHANISMS OF OROPHARYNGEAL DYSPHAGL^ 72 TABLE 3: AETIOLOGY OF ORAL-PHARYNGEAL DYSPHAGIA 73 TABLE 4: COMPONENT QUESTIONS OF THE PROTOTYPE SWALLOW INVENTORY 74 TABLE 5: AETIOLOGY OFNEUROMYOGENIC DYSPHAGL\ IN GROUP 1 75 TABLE 6: SUMMARY OF THE FACTOR ANALYSIS MATRIX WITH COMMUNALITY SUMMARY IN GROUP 1 PATIENTS (N = 45) 76 LIST OF FIGURES: FIGURE 1 .77 FIGURE 2 .78 FIGURES .79 FIGURE 4 .80 FIGURE 5 .81 FIGURE 6 .82 Certificate of Originality I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, nor material which to a substantial extent has been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgment is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project's design and conception or in style, presentation and linguistic expression is acknowledged. Karen Wallace Signed: Acknowledgments My thanks and gratitude for gently persisting throughout the life of this thesis must go to my extraordinarily patient co-supervisor Associate Professor Ian Cook. His support, energy and mentorship during the writing of this thesis gave me the fortitude to persist till the end. To Rohan Williams, who dealt with small but significant problems that one faces by being external to the primary location of the work in the later stages, I would like to pass on heartfelt thanks and wish him well with his PhD. Hopefully, I will be in a position to return the favour in the near future. To my other co-supervisor. Associate Professor David de Carle, I would like to thank for his public support with the Faculty of Medicine at the University of New South Wales and his faith that the commitment to complete the task at hand would be fulfilled. In thanking my family, I must confess that they too have taken a leap of faith in my fulfilling a commitment made so long ago. To my parents. Bill and Der\ise, who have instilled in me the values to grasp life with both hands, step out and take responsibility for any endeavour I choose to pursue in life. To my siblings, Linda and Andrew, who have been there in my life standing beside me. In more recent times to my loving, understanding, and tolerant husband Craig, who has lived through the ups and downs of this thesis. To all the patients, many of whom were experiencing a traumatic time in their own lives, who extended the generosity to help a fellow man; I thank you as without this conunitment the research would not have been possible. As this landmark step in life passes, it is now time to move onto the next chapter... Publication arising from this thesis Wallace, K.L., S. Middleton, 1. J. Cook (2000). "Development and validation of a self- report symptom inventory to assess severity of oral-pharyngeal dysphagia." Gastroenterology 118:678-687 Abstract Background/Aims: Objective assessment of symptomatic change in the severity of oral-pharyngeal dysphagia is hampered by the lack of a valid and reliable means of measuring symptom severity. The aim of this thesis was to develop and evaluate the validity and reliability of a self-report inventory to measure symptomatic severity of oral-pharyngeal dysphagia.
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