HEALTH SERVICES USE AND TREATMENT DELAY FOR PATIENTS EXPERIENCING A FIRST-EPISODE OF PSYCHOSIS: A MIXED METHODS STUDY by Kelly K. Anderson, M.Sc. Department of Epidemiology, Biostatistics and Occupational Health McGill University, Montréal Canada November, 2011 A thesis submitted to McGill University in partial fulfillment of the requirements of the degree of Doctor of Philosophy. © Kelly K. Anderson, 2011 TABLE OF CONTENTS ABSTRACT ......................................................................... ...........................iii RESUMÉ ........................................................................................................ v ACKNOWLEDGEMENTS ................................................................................ viii STATEMENT OF ORIGINALITY ........................................................................ ix CONTRIBUTION OF AUTHORS .......................................................................... x STATEMENT OF SUPPORT.............................................................................. xii LIST OF ABBREVIATIONS .............................................................................. xii LIST OF TABLES .......................................................................................... xiv LIST OF FIGURES .......................................................................................... xv LIST OF APPENDICES ................................................................................... xvi CHAPTER 1 - BACKGROUND ........................................................................... 1 CHAPTER 2 - LITERATURE REVIEW ................................................................. 6 Manuscript I: The Pathways to Mental Health Care of First-Episode Psychosis Patients – A Systematic Review ............................................. 10 Update to the Literature Review ............................................................ 37 CHAPTER 3 - OBJECTIVE AND MIXED METHODS DESIGN ................................ 38 CHAPTER 4 - THE POPULATION LEVEL: ADMINISTRATIVE DATABASE ANALYSIS ................................................................................................... 42 Detailed Methods .................................................................................. 43 Manuscript II: The Incidence of First-Episode Schizophrenia-Spectrum Psychosis in Montréal – An Estimate from Administrative Data ............. 57 Manuscript III: Patterns of Health Services Use by Patients with First-Episode Schizophrenia-Spectrum Psychosis - The Impact of Primary Care ..................................................................................... 75 i CHAPTER 5 - THE CLINICAL LEVEL: PATHWAYS TO CARE ANALYSIS ............ 104 Detailed Methods ................................................................................ 105 Manuscript IV: The Social and Clinical Determinants of the Pathway to Care and the Impact on Service Disengagement in First-Episode Psychosis ............................................................................................ 120 CHAPTER 6 - THE INDIVIDUAL LEVEL: QUALITATIVE ANALYSIS ................... 144 Detailed Methods ................................................................................ 145 Manuscript V: “There‟s too many steps before you get to where you need to be” – A Qualitative Description of the Help-Seeking Experiences of Patients with First-Episode Psychosis ........................... 152 CHAPTER 7 - DISCUSSION AND CONCLUSIONS ............................................. 172 REFERENCES ............................................................................................. 182 APPENDICES .............................................................................................. 197 i i ABSTRACT Background: Long delays in initiating treatment for a first-episode of psychosis (FEP) are associated with poor clinical and functional outcomes. However, the modes and routes by which patients access care are complex, thus contributing to delays in treatment initiation and extending the duration of untreated psychosis. Objective: To identify determinants of service use preceding a FEP, and to examine the impact of these patterns on treatment delay and engagement with specialized services. Design: A mixed-methods multilevel triangulation design was used, which involved both quantitative and qualitative methods to examine health services use by patients with FEP in Montréal at the population, clinical, and individual levels. Project #1 – Population Level: We used population-based administrative data from physician billings, hospitalizations, and public health clinics to examine the use of services prior to a first diagnosis of psychosis. Incident cases of psychosis occurring from 2004 through 2006 among individuals aged 14 to 25 years were identified, and mental health contacts preceding the index diagnosis were analyzed. Of the 456 cases identified, 32% had no contact with services preceding the index diagnosis. Nearly 50% of cases received the index diagnosis in the emergency department. Individuals who were in contact with primary care services had a reduced likelihood of contact with the emergency department and inpatient services, but also had a longer time to diagnosis and time to contact with a psychiatrist. Project #2 – Clinical Level: We estimate the association of several socio-demographic and clinical factors with the pathway to care and treatment delay among FEP patients from an early intervention program. We also assessed the impact of the pathway to care on time to disengagement from services. Our findings suggest that patients who were in contact with iii primary care had a reduced likelihood of negative pathways to care, but also had longer referral delays. Socio-demographic and clinical factors were more relevant for predicting subsequent engagement with services, and indicators of negative pathways to care were not associated with service disengagement. Project #3 – Individual Level: Using a qualitative descriptive approach, we conducted semi- structured interviews with sixteen patients recruited from a specialized early intervention program. Participants described the crucial role of significant others in initiating contact with services, and both self-stigma and a lack of knowledge regarding the symptoms of psychosis and availability of services emerged as barriers to help-seeking. Participants typically described a complex series of contacts on the pathway to care, resulting in feelings of being misunderstood and losing control, but many individuals identified unexpected benefits of their experience. Conclusions: Our findings suggest that few socio-demographic or clinical factors determine pathways to care. Rather, service-level factors, such as having access to a primary care provider, have a stronger impact on patterns of health service use across multiple indicators. Improving access to primary care may reduce the burden on emergency services, however primary care providers may need additional training in the symptoms of early psychosis and referral protocols. iv RESUMÉ Contexte : Un retard important pour la mise en route d'une prise en charge thérapeutique suite à un premier épisode psychotique (PEP) est associé à un mauvais pronostic clinique et fonctionnel. Cependant les différents modalités et parcours d‟accès aux soins de ces patients sont complexes, ce qui contribue à retarder l‟initiation du traitement et à augmenter la durée de la phase durant laquelle la psychose n'est pas traitée. Objectifs : Décrire les différents parcours d‟utilisation des services de soins avant un PEP, puis à examiner l‟impact de ces parcours sur le délai de prise en charge et engagement avec des services spécialisés. Méthodologie d’étude : Des méthodes combinées de triangulation multi-niveaux, impliquant à la fois des méthodes quantitatives et qualitatives aux niveaux populationnel, clinique, et individuel, ont été appliquées, afin d‟examiner le recours aux services de santé par des patients présentant un PEP à Montréal Projet #1 - Niveau Populationnel : Les données sur le recours aux services de soins avant un premier diagnostic de psychose ont été extraites des bases administratives de la population générale à partir des facturations médicales, des hospitalisations, et des centres de soins publics. Les cas incidents de psychoses parmi les individus âgés de 14 à 25 ans entre 2004 et 2006 ont été identifiés, et les contacts avec les services psychiatriques avant le diagnostic ont été analysés. Parmi les 456 cas identifiés, 32% n‟avaient eu aucun contact avec un service de soins avant que le premier diagnostic ne soit posé. Le premier diagnostic de psychose avait été établi dans un service d‟urgences pour presque la moitié des cas. Les individus en contact avec des soins de première ligne avaient une probabilité plus faible de contact avec un service d‟urgences ou d‟hospitalisation, mais c'est dans cette catégorie de patients que les v délais étaient les plus importants avant le diagnostic et avant une consultation avec un psychiatre. Projet #2 - Niveau Clinique : Nous avons étudié l‟association entre des facteurs sociodémographiques et cliniques et, d‟une part les modalités d‟accès aux soins, et d‟autre part le délai de traitement, de patients présentant un PEP et inscrits à un programme d‟intervention précoce. Nous avons également évalué l‟impact du schéma d‟accès aux soins sur le délai d'abandon du programme d‟intervention précoce. Nos résultats suggèrent que les patients en contact avec des soins de première ligne ont une probabilité plus faible de trajectoires négatives d‟accès aux soins, mais consultent un spécialiste dans des délais plus longs. Les facteurs sociodémographiques et cliniques prédisaient de manière plus pertinente l‟engagement par le patient avec les services spécialisés, et les indicateurs de trajectoires négatives d‟accès aux soins n‟étaient pas associés à un désengagement avec les services spécialisés. Projet #3 - Niveau Individuel : A partir d‟une approche qualitative descriptive, nous avons conduit des entretiens avec 16 patients recrutés au sein d‟un programme d‟intervention précoce. Les participants décrivaient le rôle crucial de tierces personnes dans l‟initiation du contact avec les services de soins. L‟auto-stigmatisation par le patient, le manque de connaissance des symptômes de psychose, et la disponibilité insuffisante des services, ont émergé en tant qu‟obstacles à la recherche d‟aide. Les participants décrivaient typiquement des séries complexes de contacts sur le cheminement d‟accès aux soins, aboutissant à des sentiments d‟être mal compris et d‟une perte de contrôle de soi. Cependant, de nombreux patients identifiaient également dans cette expérience des bénéfices inattendus. v i Conclusions: Nos résultats suggèrent que le recours aux soins dépend peu de facteurs sociodémographiques ou cliniques. Les facteurs propres aux services de santé, tels que l‟accès aux soins de première ligne, ont un impact plus important sur les modalités de recours aux services spécialisées, et ceci à travers de multiples indicateurs. Améliorer l‟accès aux soins primaires pourrait ainsi diminuer la charge de travail des services d‟urgences, à condition de former les intervenants des centres de soins de première ligne à mieux identifier les symptômes précoces de psychose et à orienter ces patients vers des services spécialisés. vii ACKNOWLEDGEMENTS This doctoral dissertation would not have been possible without the support and encouragement of several people. First and foremost, I am indebted to my thesis supervisor, Dr. Rebecca Fuhrer. Her advice and guidance has been invaluable to me and has played an important role in my growth as an independent researcher. Thank you for being such a wonderful mentor and role model. My sincere gratitude to my co-supervisor, Dr. Ashok Malla, whose dedication and passion for improving the lives of patients suffering from psychotic disorders has inspired and strengthened this work. I would also like to thank the members of my thesis committee, Drs. David Buckeridge and Norbert Schmitz, as well as Dr. Michal Abrahamowicz. Their generosity of time and expertise has greatly enhanced the work contained within this thesis. For technical and administrative support, I thank the staff of the Prevention and Early Intervention Program for Psychosis (PEPP), especially Sherezad Abadi and Nicole Pawliuk, as well as the symptom evaluators for their role in data collection and participant recruitment. I am also grateful to the patients of the PEPP program who graciously shared their insights and experiences. My deepest gratitude to my parents, who instilled in me a love of learning and whose unwavering support and encouragement allowed me to discover my passion and find my path. Finally, I am forever grateful to my husband, who wholeheartedly came along for the ride. This was my dream, thank you for making it ours. vi ii
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