Assessing Symptom Burden and Health-Related Quality of Life

124 Pages·2011·0.78 MB·English

by  Ulla Walfridsson

University Medical Dissertations No. 1279

Assessing Symptom Burden and Health-Related Quality of
Life in patients living with arrhythmia

and

ASTA

Arrhythmia-Specific questionnaire in Tachycardia
and Arrhythmia

Ulla Walfridsson

Department of Medical and Health Sciences
Division of Nursing Science
Linköping University, Sweden

Linköping 2011

2011
Copyright Ulla Walfridsson, 2011

Supervisor Anna Strömberg, RN, Prof.

Co-Supervisor Kristofer Årestedt, RN, PhD

Cover illustration Anna Südow

Address:
Ulla Walfridsson
Department of Cardiology
University Hospital
SE-581 85 Linköping
Sweden
Email: [email protected]

Published articles have been reprinted with the permission of the copyright holder.

Printed in Sweden by LiU-Tryck, Linköping, Sweden, 2011
ISBN 978-91-7393-017-8
ISSN 0345-0082
Dissertation 1279

All rights reserved to the author. No part of this publication may be reproduced or transmitted
in any form or by any means without written permission from the author.
To Hanna, David & Håkan

Ju mer man tänker, ju mer inser man att det inte finns något enkelt svar
Nalle Puh

CONTENTS

ABSTRACT ................................................................................................................... 1
LIST OF PAPERS ........................................................................................................ 3
ABBREVIATIONS ....................................................................................................... 5
INTRODUCTION ......................................................................................................... 7
AIMS OF THE THESIS ............................................................................................... 9
BACKGROUND ......................................................................................................... 11
Arrhythmias ......................................................................................................... 11
Definition, prevalence and diagnosis .................................................................. 11
AV-Nodal reentry tachycardia and Wolff-Parkinson-White syndrome .......... 11
Atrial fibrillation .............................................................................................. 12
Other arrhythmias ............................................................................................... 12
Atrial flutter ..................................................................................................... 12
Other atrial macro-reentry arrhythmias ........................................................... 13
Focal Atrial Tachycardia ................................................................................. 13
Ventricular arrhythmias ................................................................................... 13
Treatment options for arrhythmia-patients ...................................................... 14
Symptoms and symptom burden ........................................................................ 15
Health, Quality of Life and Health-Related Quality of Life ............................ 16
Health and Quality of Life ............................................................................... 16
Health-Related Quality of Life ........................................................................ 17
Assessment of symptom burden and Health-Related Quality of Life in
arrhythmia-patients with patient-reported outcomes ....................................... 18
Conceptualizing assessment of symptom burden and Health-Related Quality
of Life .................................................................................................................... 20
Conceptualizing symptom burden and Health-Related Quality of Life
assessment in the ASTA questionnaire ............................................................ 21
Conceptual model for the development of the disease-specific questionnaire
ASTA ............................................................................................................... 22
METHODS .................................................................................................................. 23
Design and Setting................................................................................................ 23
Participants ........................................................................................................... 26
Study I .............................................................................................................. 26
Study II ............................................................................................................ 26
Study III ........................................................................................................... 27
Study IV ........................................................................................................... 28
Data collection ...................................................................................................... 30
Procedures ........................................................................................................ 30
Questionnaires used in the studies ..................................................................... 31
SF-36 ................................................................................................................ 31
EQ-5D .............................................................................................................. 32
SCL .................................................................................................................. 32
Development of the ASTA questionnaire .......................................................... 33
ASTA symptom burden ................................................................................... 33
ASTA Health-Related Quality of Life ............................................................. 34
Development and initial testing of the ASTA questionnaire ........................... 35
Statistical analysis of data ................................................................................... 39
Statistical tests in Studies I and II .................................................................... 39
Statistical tests in Studies III and IV ................................................................ 40
ETHICAL CONSIDERATIONS ............................................................................... 43
RESULTS .................................................................................................................... 45
Symptom burden .................................................................................................. 45
Health-Related Quality of Life ........................................................................... 46
The ASTA questionnaire ..................................................................................... 47
Data quality ...................................................................................................... 48
Validity ............................................................................................................ 48
Reliability (homogeneity) ................................................................................ 52
DISCUSSION .............................................................................................................. 53
Symptom burden .................................................................................................. 53
Health-Related Quality of Life ........................................................................... 54
The ASTA questionnaire ..................................................................................... 57
Data quality ...................................................................................................... 57
Validity ............................................................................................................ 58
Reliability (homogeneity) ................................................................................ 60
Methodological issues and limitations in Studies I-IV ..................................... 62
CONCLUSION ........................................................................................................... 65
CLINICAL IMPLICATIONS ................................................................................... 66
FUTURE ...................................................................................................................... 67
SVENSK SAMMANFATTNING .............................................................................. 68
ACKNOWLEDGEMENTS ....................................................................................... 70
APPENDIX 1 ............................................................................................................... 74
The ASTA questionnaire ..................................................................................... 74
ASTA background data ................................................................................... 74
ASTA symptom burden ................................................................................... 74
ASTA Health-Related Quality of Life ............................................................. 74
Recommendations for scoring of the ASTA questionnaire .............................. 75
General scoring information ............................................................................ 75
ASTA symptom burden scale .......................................................................... 75
ASTA symptoms near syncope and syncope................................................... 75
ASTA Health-Related Quality of Life ............................................................. 75
Transforming of scale scores ........................................................................... 76
REFERENCES ............................................................................................................ 79