by Kelly K. Anderson, M.Sc. Department of Epidemiology, Biostatistics and Occupational Health ...

242 Pages·2011·1.73 MB·English

by  Kelly Anderson

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

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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

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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
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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.

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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
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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.
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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.

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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.

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