Outcome Measurement in Complex Regional Pain Syndrome

OUTCOME ASSESSMENT IN COMPLEX REGIONAL PAIN SYNDROME

MSc Thesis

Tara Packham

OUTCOME ASSESSMENT

IN

COMPLEX REGIONAL PAIN SYNDROME

By

TARA PACKHAM, BHSc(OT)

A Thesis

Submitted to the School of Graduate Studies

In Partial Fulfilment of the Requirements

For the Degree

Master of Sciences

McMaster University

? Copyright by Tara Packham, April 2011

II

MSc Thesis

Tara Packham

MASTER OF SCIENCES (2011)

(Rehabilitation Sciences)

McMaster University

Hamilton, Ontario

TITLE: Outcome measurement in Complex Regional Pain Syndrome

AUTHOR: Tara Packham

SUPERVISOR: Dr. Joy MacDermid

NUMBER OF PAGES: 136

III

MSc Thesis

Tara Packham

Table of contents

Abstract¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­ 1

Introduction¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­. 2

Background on Complex Regional Pain Syndrome (CRPS)

CRPS: the measurement challenges

Clinical measurement concepts and principles

Use of cognitive interviewing to inform outcome measures

Development of the Hamilton Inventory for CRPS

Conceptual development of an outcome measure for CRPS

Initial steps of development

Preface¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­ 14

Chapter One: A systematic review of outcome assessments for CRPS:

describing the elephant ¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­. 15

Introduction

Methods

Results

Discussion

References

Chapter Two: Do you see what I see? A cognitive debriefing study of the

CB-HI-CRPS¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­ 59

Introduction

Materials and Methods

Results

Discussion

References

Conclusions¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­.. 115

Outcome measurement in CRPS

Progress of HI-CRPS tool

Future directions for HI-CRPS

References¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­¡­ 120

Appendices:

Appendix A: Evaluation tool for article quality and scoring guidelines

Appendix B: CB-HI-CRPS

Appendix C: User / Scoring Manual for HI-CRPS

Appendix D: SR-HI-CRPS

Appendix E: Cognitive Interview questions

IV

MSc Thesis

Tara Packham

OUTCOME ASSESSMENT IN

COMPLEX REGIONAL PAIN SYNDROME

Abstract:

Complex regional pain syndrome is a neurological condition characterized by a

constellation of variable and seemingly disparate signs and symptoms for which

there is presently no definitive diagnostic test. The opportunity exists for

development of a condition-specific outcome measure for complex regional pain

syndrome affecting any limb(s) that could be used by therapists, physicians and

researchers to evaluate their patients, make treatment decisions, and monitor the

changes in both impairments and quality of life experienced by those affected

individuals. This thesis addresses outcome assessment in complex regional pain

syndrome, incorporating 2 papers. The first is a systematic review of the current

scope and psychometric rigor of outcome assessments available to health

professionals to guide their management of this condition. The second paper

describes the preliminary development steps of a new measurement tool for

complex regional pain syndrome, with a focus on a cognitive debriefing study of

current assessment practices and preferences of a cross-section of health

professionals used to inform the definitions and user manual for a multidisciplinary assessment. Finally, the thesis addresses areas for future

refinement and testing of the proposed outcome measure.

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