Assessing the psychological impact and acceptability of a first-trimester screening test for pre ...

313 Pages·2015·7.1 MB·English

by  James Harris

Assessing the psychological impact and acceptability of a
first-trimester screening test for pre-eclampsia

James Matthew Harris

University College London
Department of Clinical, Educational & Health Psychology
Thesis submitted for the Degree of Doctor of Philosophy
DECLARATION
The following work was carried out at the Health Psychology Research Centre, in the
Department of Clinical, Educational, and Health Psychology, University College
London, under the supervision of Professor Susan Michie, Professor Linda Franck, and
Dr. Belinda Green. Edited versions of Chapter 4 (Harris, Franck & Michie, 2012),
Chapter 5 (Harris, Franck, Green and Michie, 2014) and Chapter 6 (Harris, Franck,
Green, Wilson and Michie, 2014) have been published in peer-reviewed professional
journals. See Appendix 1-3 for copies of the papers that have been published.
Permission to reproduce these articles has been granted by the publishers Elsevier and
Taylor & Francis. The results from Chapters 3-7 have also been presented at the British
Psychological Society’s Division of Health Psychology Conference (2012, 2013), The
Royal College of Nursing Research Conference (2011), The European Health
Psychology Society Conference (2011) and The UK Society of Behavioural Medicine
Conference (2012).

This thesis is my own work and contains nothing which is the outcome of work done in
collaboration with others, except as specified above, where co-authors have been noted.
Any auxiliary support is noted in the acknowledgements. My work was partly funded
by the NIHR UCLH/UCL Comprehensive Biomedical Research Centre.

Signed:_______________________ Date: 24/12/14
Printed Name: James Matthew Harris
ACKNOWLEDGEMENTS
I was fortunate enough to learn from three wonderful supervisors during this journey,
and I would like to thank each in turn. Firstly, to Professor Susan Michie, it is difficult
to express how grateful I am for your patience and guidance. You have taught me much
more than an understanding of science and have helped me grow as a person. To
Professor Linda Franck, who took an initial leap of faith in providing my funding, and
who has proven to be an invaluable and inspirational mentor; I will spend my research
career trying to repay your trust. To Dr. Belinda Green, who provided a much-needed
reminder of the Midwifery focus of my thesis, thank you for your time. This work
would not have been possible without each of your expertise and insight, and it has been
a genuine privilege to work with each of you.
I would like to thank past and present members of the Health Psychology Research
Group, along with the various occupants of the Psychology PhD office! Your generous
advice and support have been invaluable in shaping my work to date. Particular thanks
go to my fellow comrades Fabiana Lorencatto, Chris Jacobs and Lorna Hobbs, for both
sharing your expertise and for coping with my many meltdowns during the process!
I would like to thank each of my participants from my various studies, all of whom gave
their time not for financial reward, but to improve the care of others. Being a midwife is
a privilege, and I hope that my future research endeavours will help to improve the care
of pregnant women.
I would like to thank my friends and family for your continuing support, and want to
apologies for the many missed occasions and irritability that this thesis contributed to!
Finally, to my partner Steven Lewis; there are no words to sufficiently express my
gratitude. Without your understanding, encouragement, and generosity I would not have
had the confidence or strength to finish. Thank you.

Towards the end of my data collection, a very dear friend lost her baby, and almost her
own life, due to pre-eclampsia. This thesis is dedicated to her daughter, Eme, who I did
not get to meet, but whose short life has touched me deeply.
ABSTRACT
BACKGROUND
A first-trimester prenatal screening test for pre-eclampsia was launched in 2010. It differs
from previously assessed prenatal screening tests.
AIMS
(i) To assess the psychological benefits and consequences of providing a first trimester
screening test for pre-eclampsia.
(ii) To assess the acceptability of the test amongst pregnant women and healthcare
professionals.
METHODS
A mixed methods approach was taken. Five consecutive studies using primary and
secondary data from UK pregnant women and their healthcare providers were conducted:
(i) a systematic review, (ii) a qualitative study (pregnant women); (iii) a qualitative study
(healthcare professionals); (iv) a case control study; (v) a discrete choice experiment.
RESULTS
A first trimester screening test for pre-eclampsia has the potential to positively change
health behaviours, but could also decrease self-monitoring. The impact appears to differ
depending on whether the woman is concerned with the potential consequences to herself or
her fetus. Health professionals are concerned with the clinical utility of the prenatal
screening test, and on its potential to medicalise the pregnancy pathway. However, there
does not appear to be an association between the amount of technological monitoring and
birthplace preference. A discrete choice experiment showed overwhelming support for the
introduction of this test.
CONCLUSIONS
There is no evidence that this new prenatal screening test will cause harm to pregnant
women. Women appear to welcome the additional information it provides. Receiving a
positive pre-eclampsia screening test result presents potential opportunities for health-
promotion interventions. To make the most of these opportunities, it will be important for
clinicians to understand how women perceive and respond to this screening test; the self-
regulation model provides a useful framework in which to do this. This work provides a
framework for assessing the psychological impacts of the many emerging prenatal
screening tests that lack a diagnostic test or risk-reduction intervention.
EXTENDED ABSTRACT
BACKGROUND
A first-trimester prenatal screening test for pre-eclampsia was launched in 2010. It
differs from previous prenatal screening tests in three ways; (i) it provides a screening
test for a health threat that impacts both mother and fetus (ii) it does not have an
associated diagnostic test, or risk-reduction intervention (iii) it informs the mother, for
the first time, that her pregnancy has the potential to harm her. Women found high-risk
for pre-eclampsia receive specialist care including a 4-weekly ultrasound scan to aid
detection of the disease at the earliest opportunity.
AIMS
To assess the psychological benefits and consequences of providing a first trimester
screening test for pre-eclampsia. To assesses if pregnant women and healthcare
professionals are accepting of its introduction.
METHODS
A theoretically informed, mixed methods, sequential approach to the research was
taken. The studies were informed by a review of theoretical and empirical evidence
regarding health screening. Five consecutive studies using primary and secondary data
from pregnant women and their health care providers in the United Kingdom were
conducted:
1. A systematic review of the literature to assess if psychological reactions to
prenatal screening tests differ depending on whether it focuses on the mother or
the fetus;
2. Semi-structured interviews with women who had experienced the pre-eclampsia
screening test (n=15) to explore the psychological impact of the screening test.
This study was informed by the common sense model of self-regulation
3. Semi-structured interviews with healthcare professionals who had cared for
women who had had the pre-eclampsia screening test (n=20). This study was
informed by the themes developed from study two.
4. A case control study (n=1100) that examined if there was an association between
the number of ultrasounds a woman received in her pregnancy and the place of
birth she chose.
5. A discrete choice experiment that recruited pregnant women (n=119), women
who had previously experienced pre-eclampsia (n=111) and healthcare
professionals (n=76) and compared the current status-quo with a new
biochemical screening test for pre-eclampsia on four attributes (accuracy of test,
level of information, schedule of follow-up, and test format) in a binary choice
format.
RESULTS
Pregnant women are affected by prenatal screening test differently, depending on
whether the test focuses on the impact to the mother or the fetus. A first trimester
screening test for pre-eclampsia does not appear to cause an unacceptable increase in
anxiety. It has the potential to positively change health behaviours, but could also
decrease self-monitoring behaviour. The impact differs depending on whether the
woman is concerned with the potential consequences to herself or her fetus. Health
professionals are concerned with the clinical utility of the prenatal screening test, and on
its potential medicalisation of the pregnancy pathway. However, there does not appear
to be an association with the amount of technological monitoring in pregnancy, and a
woman’s assessment of medical risk, as measured by chosen place of birth. The discrete
choice experiment showed overwhelming support for a biochemical screening test for
pre-eclampsia, with accuracy and test format being the most valued attributes.
CONCLUSIONS
There is no evidence that the new pre-eclampsia prenatal screening test will cause harm
to pregnant women. Women appear to welcome the additional information it provides.
Reactions to prenatal screening tests are linked to illness representations of the health
threat, with a perceived threat to the self resulting in a stronger sense of control, while a
perceived threat to the fetus results in a dependence on health care providers. Receiving
a positive pre-eclampsia screening result presents potential opportunities for health-
promotion interventions. To make the most of these opportunities, it will be important
for clinicians to understand how women perceive and respond to this screening test; the
self-regulation model provides a useful framework to understand these responses. This
thesis provides a framework for assessing the psychological impacts of the many
emerging prenatal screening tests that lack a diagnostic test or risk-reduction
intervention.
TABLE OF CONTENTS
Declaration ............................................................................................................................... 2
Acknowledgements ............................................................................................................... 3
Abstract ...................................................................................................................................... 4
Extended Abstract .................................................................................................................. 5
Table of Contents .................................................................................................................... 7
Table of Tables ...................................................................................................................... 13
Table of Figures .................................................................................................................... 14
Chapter 1: General Introduction .................................................................................... 15
1.1 Chapter Summary ............................................................................................................... 16
1.2 Introduction ......................................................................................................................... 17
1.3 Ethical, Historical and Sociological context .............................................................. 20
1.3.1 Ethics and screening in prenatal care ............................................................................. 20
1.3.2 The development of screening in prenatal care .......................................................... 21
1.3.3 Sociological concerns and prenatal screening ............................................................ 23
1.3.4 Section summary ..................................................................................................................... 25
1.4 The Psychological impacts of Prenatal Screening .................................................. 26
1.4.1 Perception of risk and prenatal screening ..................................................................... 26
1.4.2 Prenatal attachment and screening .................................................................................. 27
1.4.3 Post traumatic stress disorder and screening ............................................................. 28
1.4.4 Section summary ...................................................................................................................... 29
1.5 The acceptability of a new prenatal screening test .................................................... 30
1.5.1 The concept of acceptability ................................................................................................ 30
1.5.2 The assessment of acceptability ......................................................................................... 30
1.5.3 The influence of healthcare professionals ...................................................................... 31
1.5.4 Section summary ...................................................................................................................... 31
1.6 Tests comparable with pre-eclampsia screening .................................................... 33
1.6.1 Gestational Diabetes screening ........................................................................................... 33
1.6.2 HIV screening ............................................................................................................................. 34
1.6.3 Genetic screening - inherited conditions and cancer screening............................ 35
1.6.4 Section summary ...................................................................................................................... 36
1.7 Conclusions and Research Questions .......................................................................... 37
1.7.1 Research Questions .................................................................................................................. 38
REFERENCES .................................................................................................................................... 40
Chapter 2: focus on pre-eclampsia ................................................................................ 53
2.1 Chapter summary ............................................................................................................... 54
2.2 Pre-eclampsia ...................................................................................................................... 54
2.3 Current advice for the identification of pregnancies at risk of pre-eclampsia
56
2.4 Factors that may reduce risk of pre-eclampsia ....................................................... 56
2.4.1 Low-Dose Aspirin ..................................................................................................................... 57
2.4.2 Dietry changes and supplimentation ............................................................................... 58
2.4.3 Lifestyle Changes ..................................................................................................................... 59
2.5 Current pre-eclampsia screening research and national policy ....................... 61
2.6 The screening test in question ....................................................................................... 63
2.6.1 Study summary .......................................................................................................................... 63
2.6.2 Study critique ............................................................................................................................. 65
Summary of critique ............................................................................................................................... 69
2.7 Chapter summary ............................................................................................................... 70
REFERENCES .................................................................................................................................... 71
Chapter 3: The philosophical, theoretical and methodoligical basis of the
thesis ........................................................................................................................................ 76
3.1 Introduction ......................................................................................................................... 77
3.2 Philosophical Framework for the thesis .................................................................... 78
3.2.1 Exploring Research Paradigms ........................................................................................... 78
3.2.2 Critique of the Pragmatic Paradigm ................................................................................. 79
3.2.3 Philosophical position of this thesis ................................................................................. 80
3.3 Theoretical Framework for the thesis ........................................................................ 82
3.3.1 The Common Sense Model of Self-Regulation ............................................................. 82
3.4 Methodological Considerations for the thesis ......................................................... 84
3.5 Chapter summary ............................................................................................................... 85
REFERENCES .................................................................................................................................... 86
Chapter 4: Assessing the psychological effects of prenatal screening tests for
maternal and fetal health conditions: a systematic review. ................................. 89
4.1 Abstract .................................................................................................................................. 90
4.2 Introduction ......................................................................................................................... 91
4.3 Methods.................................................................................................................................. 92
4.3.1 Approach ...................................................................................................................................... 92
4.3.2 Sources .......................................................................................................................................... 92
4.3.3 Study Selection .......................................................................................................................... 93
4.3.4 Data extraction, quality assessment and synthesis .................................................... 93
4.4 Results .................................................................................................................................... 94
4.4.1 Overview of included studies .............................................................................................. 95
4.4.2 Behavioural Impact - health implications for the mother........................................ 96
4.4.3 Behavioural Impact – health implications for the fetus ............................................ 97
4.4.4 Emotional Impact – health implications for the mother ....................................... 105
4.4.5 Emotional Impact – health implications for the fetus ............................................ 105
4.4.6 Cognitive Impact – health implications for the mother ......................................... 110
4.4.7 Cognitive Impact – health implications for the fetus .............................................. 110
4.5 Discussion .......................................................................................................................... 111
4.6 Conclusion .......................................................................................................................... 113
REFERENCES ................................................................................................................................. 114
Chapter 5: The psychological impact of providing women with risk
information for pre-eclampsia: a qualitative study. .............................................. 118
5.1 Abstract ............................................................................................................................... 119
5.2 Background ....................................................................................................................... 120
5.2.1 Research Aims ......................................................................................................................... 122
5.3 Materials and Methods .................................................................................................. 122
5.3.1 Design and setting ................................................................................................................. 122
5.3.2 Sample ........................................................................................................................................ 124
5.3.3 Procedure .................................................................................................................................. 124
5.3.4 Transcriptions ......................................................................................................................... 125
5.3.5 Validity ....................................................................................................................................... 125
5.3.6 Ethical considerations ......................................................................................................... 125
5.3.7 Analytical Methods ................................................................................................................ 129
5.4 Results ................................................................................................................................. 131
5.4.1 Low risk women ..................................................................................................................... 131
5.4.2 High risk women .................................................................................................................... 131
5.4.3 General Themes ...................................................................................................................... 137
5.5 Discussion .......................................................................................................................... 142
5.6 Conclusion .................................................................................................................................... 144
REFERENCES ................................................................................................................................. 145
Chapter 6 - Barriers and facilitators to offering a universal screening test for
pre-eclampia as perceived by midwives and obstetricians: a qualitative study
................................................................................................................................................. 148
6.1 Abstract ............................................................................................................................... 149
6.2 Background ....................................................................................................................... 150
6.2.1 Research Questions ............................................................................................................... 151
6.3 Materials and Methods .................................................................................................. 152
6.3.1 Design ......................................................................................................................................... 152
6.3.2 Setting ......................................................................................................................................... 152
6.3.3 Sample ........................................................................................................................................ 152
6.3.4 Procedure .................................................................................................................................. 153
6.3.5 Validity ....................................................................................................................................... 153
6.3.6 Ethical considerations ......................................................................................................... 154
6.3.7 Analytical Methods ................................................................................................................ 155
6.4 Results ................................................................................................................................. 156
6.4.1 Facilitators ................................................................................................................................ 157
6.4.2 Barriers ...................................................................................................................................... 159
6.5 Discussion .......................................................................................................................... 167
6.6 Conclusion .......................................................................................................................... 169
REFERENCES ................................................................................................................................. 170
Chapter 7: Does increased monitoring affect the birth choices of pregnant
women ................................................................................................................................... 173
7.1 Abstract ............................................................................................................................... 174
7.2 Introduction ...................................................................................................................... 174
7.3 Methods............................................................................................................................... 176
7.3.1 Study design ............................................................................................................................. 176
7.3.2 Sample ........................................................................................................................................ 177
7.3.3 Variables .................................................................................................................................... 177
7.3.4 Sample size considerations ............................................................................................... 178
7.3.5 Setting ......................................................................................................................................... 178
7.3.6 Procedure .................................................................................................................................. 178
7.3.7 Analysis ...................................................................................................................................... 178
7.3.8 Ethical considerations ......................................................................................................... 179
7.4 Findings............................................................................................................................... 179
7.4.1 The frequency of US exposure .......................................................................................... 179
7.4.2 Differences in the frequency of US by birthplace preference at start of labour
181
7.4.3 Birthplace preference over time ...................................................................................... 182
7.4.4 Factors predicting birthplace preference .................................................................... 183
7.5 Discussion .......................................................................................................................... 185
7.6 Conclusion .......................................................................................................................... 187
REFERENCES ................................................................................................................................. 188
Chapter 8 - Identifying attributes that pregnant women and healthcare
professionals value when considering a prenatal screening test for pre-
eclampsia ............................................................................................................................. 190
8.1 Abstract ............................................................................................................................... 191
8.2 Introduction ...................................................................................................................... 192
8.3 Background ....................................................................................................................... 193
8.3.1 Research Questions ..................................................................................................... 193
8.4 Methods............................................................................................................................... 194
8.4.1 Stage one - Identifying the attributes ............................................................................ 194
8.4.2 Stage two - Ranking exercise ............................................................................................ 195