PATIENT RELATED DIAGNOSTIC DELAY, SYMPTOM APPRAISAL AND LAY CONSULTATION IN HEAD AND NECK CANCER By John Anthony Queenan A thesis submitted to the Department of Public Health Sciences In conformity with the requirements for the degree of Doctor of Philosophy Queen’s University Kingston, Ontario, Canada December, 2014 Copyright ©John Anthony Queenan, 2014 i ABSTRACT The objectives of this thesis were to; 1) identify established risk factors and gaps in the current peer reviewed literature relating to factors associated with patient related diagnostic delay in head and neck cancer, 2) describe and document patients’ personal responses to symptoms of head and neck cancer, the characteristics of the patients’ lay-consultants and the responses that the patients received from their lay-consultants and 3) assess the association between patient/network- related diagnostic delay and a) whether the patient felt any urgency to investigate their symptoms, b) whether the patient told someone in their social network about their symptoms (lay- consultancy) and c) lay-consultant influence. The first manuscript is a scoping review that demonstrates that there is a lack of studies that address; the personal symptom experiences of patients, the psycho-social processes of help- seeking and the independent effects of suspected risk factors for head and neck cancer. The results of the first manuscript also provided me with guidance on what the important confounders of our primary relationship of interest were most likely to be. The second manuscript suggests that patient related delay may be influenced by the patients’ mistaken belief that their symptoms were non-urgent with or without the influence of their lay-consultant. The third manuscript provides evidence that the primary barrier to seeking help from an HCP is whether or not those individuals experiencing symptoms think they are urgent enough to warrant further investigation. The study found no evidence to support the assertion that increased risk of delay is associated with decreased lay-consultancy. ii The results of this thesis indicate that most of the patient related delay occurs during the individuals’ symptom appraisal process with or without input from their social network. I think that individuals at risk of late stage presentation of head and neck cancer should be provided with targeted information encouraging them to seek help from a health care provider if the key signs or symptoms of head and neck cancer have not resolved within three weeks. iii STATEMENTS OF CO-AUTHORSHIP The manuscripts presented in this thesis are the work of John A. Queenan in collaboration with his supervisors, Drs. Patti A. Groome and Benjamin H. Gottlieb, as well as co-authors. All of the manuscripts were written with award and grant support from the Terry Fox Foundation Training Program in Transdisciplinary Cancer Research in partnership with the CIHR and an Operating Grant from the CIHR. Chapter 3, Manuscript 1: A scoping review of the predictors of patient related diagnostic delay in head and neck cancer. Co-authors on this manuscript are Benjamin H. Gottlieb, Deb Feldman-Stewart, Stephen F. Hall, Jonathan Irish, Colleen Webber and Patti A. Groome. Interpretation of results and writing of the manuscript was performed by John Queenan with supervision from Patti Groome and Ben Gottlieb, with feedback from Deb Feldman-Stewart, Stephen Hall and Jonathan Irish. Colleen Webber provided analytical support. Chapter 4, Manuscript 2: Symptom appraisal and help-seeking for symptoms of head and neck cancer. Co-authors on this manuscript are Benjamin H. Gottlieb. Deb Feldman-Stewart. Stephen F. Hall. Jonathan Irish. and Patti A. Groome. Interpretation of results and writing of the manuscript was performed by John Queenan with supervision from Patti Groome and Ben Gottlieb, with feedback from Deb Feldman-Stewart, Stephen Hall and Jonathan Irish. Chapter 5, Manuscript 3: The relationship between patient related diagnostic delay, symptom urgency and lay consultation in head and neck cancer. Co-authors on this manuscript are Benjamin H. Gottlieb. Deb Feldman-Stewart. Stephen F. Hall. Jonathan Irish. and Patti A. Groome. Interpretation of results and writing of the manuscript was performed by John Queenan iv with supervision from Patti Groome and Ben Gottlieb, with feedback from Deb Feldman-Stewart, Stephen Hall and Jonathan Irish. v ACKNOWLEDGEMENTS Although I am responsible and accountable for everything contained within the pages of this Thesis I cannot possibly take sole credit for its entirety. I owe an incredible depth of gratitude to more than a few individuals. First, my primary supervisor, Dr. Patti Groome, who forced me to rise above my own considerably lower standards: any shortcomings within this document are despite her best efforts to make me shine. Second, my co-supervisor Dr. Benjamin Gottlieb, who patiently and kindly introduced me to the world of social psychology and held me (again) to standards higher than my own. Third, and as a group, Drs. Deb Feldman-Stewart. Steve Hall and Jon Irish for patiently and diligently reviewing my manuscripts and offering invaluable advice and insights. Drs. Hall and Irish also trusted me enough to allow me to access their patients. I sincerely hope that all of your guidance rubbed off on me and raised my standards. I am thankful to my study team, in particular Colleen Simpson (PMH) and Linda Hagerman (KGH) whose enthusiasm and skills ensured that we both had study participants and high quality interviews. I would also like to extend my thanks to the Head and Neck Clinical staff at the Kingston Regional Cancer Center who allowed me to hang out with them every Thursday. I love my family, Harriet, Caelan and Declan whose never-ending support and love underscored my resolve to complete my PhD. My mother died of cancer while I was completing my PhD and without them I would have lost focus and possibly abandoned my studies. Finding meaning in my work was something I lost for a period of time and they forced it back in. Lastly and most importantly: thank you to the men and women who agreed to participate in this study. I dedicate this Thesis to all cancer patients. vi TABLE OF CONTENTS CHAPTER 1: GENERAL INTRODUCTION ............................................................................ 1 1.1 Thesis Background and Rationale ....................................................................................... 2 1.2 Thesis Overview and Study Design ...................................................................................... 3 1.3 Thesis Objectives ................................................................................................................... 4 1.4 Thesis Organization .............................................................................................................. 4 1.5 References .............................................................................................................................. 5 CHAPTER 2: LITERATURE REVIEW ...................................................................................... 9 2.1 Overview .............................................................................................................................. 10 2.2 Symptom Appraisal............................................................................................................. 10 2.3 Social Networks ................................................................................................................... 11 2.4 Help-Seeking ........................................................................................................................ 12 2.6 Head and Neck Cancers ...................................................................................................... 18 2.7 Screening for Head and Neck Cancer ............................................................................... 22 2.8 Patient Related Diagnostic Delay in Head and Neck Cancer .......................................... 23 2.9 Diagnostic Delay and Stage at Diagnosis ........................................................................... 24 2.10 Study Rationale and Conceptual Model .......................................................................... 24 2.13 Summary and Potential Impact ....................................................................................... 27 2.13 References .......................................................................................................................... 29 CHAPTER 3: A SCOPING REVIEW OF THE PREDICTORS OF PATIENT RELATED DIAGNOSTIC DELAY IN HEAD AND NECK CANCER ...................................................... 42 3.1 ABSTRACT ......................................................................................................................... 43 3.2 INTRODUCTION ............................................................................................................... 45 vii 3.3 MATERIALS AND METHODS ........................................................................................ 46 3.4 RESULTS ............................................................................................................................. 47 3.5 DISCUSSION ...................................................................................................................... 51 3.5 CONCLUSION .................................................................................................................... 56 3.7 REFERENCES ...................................................................................................................