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Patient Reported
Outcomes and
Quality ofLife in
Surgery
ThanosAthanasiou
VanashPatel
AraDarzi
Editors
123
Patient Reported Outcomes and Quality
of Life in Surgery
Thanos Athanasiou
Vanash Patel • Ara Darzi
Editors
Patient Reported
Outcomes and Quality
of Life in Surgery
Editors
Thanos Athanasiou
Surgery and Cancer
Imperial College London
London, UK
Ara Darzi
Surgery and Cancer
Imperial College London
London, UK
Vanash Patel
Surgery and Cancer
Imperial College London
London, UK
ISBN 978-3-031-27596-8 ISBN 978-3-031-27597-5 (eBook)
https://doi.org/10.1007/978-3-031-27597-5
© Springer Nature Switzerland AG 2023
This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher,
whether the whole or part of the material is concerned, specically the rights of translation,
reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microlms or in any
other physical way, and transmission or information storage and retrieval, electronic adaptation,
computer software, or by similar or dissimilar methodology now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this
publication does not imply, even in the absence of a specic statement, that such names are
exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information in
this book are believed to be true and accurate at the date of publication. Neither the publisher nor
the authors or the editors give a warranty, expressed or implied, with respect to the material
contained herein or for any errors or omissions that may have been made. The publisher remains
neutral with regard to jurisdictional claims in published maps and institutional afliations.
This Springer imprint is published by the registered company Springer Nature Switzerland AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Contents
1 Quality of Life Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Esha Khanderia and Vanash Patel
2 Statistical Methods for PROMS and QoL . . . . . . . . . . . . . . . . . . 9
Bhamini Vadhwana and Munir Tarazi
3 Research Methods for PROMS and QoL . . . . . . . . . . . . . . . . . . . 17
Bhamini Vadhwana and Munir Tarazi
4 Methodology for Systematic Reviews on Measurement
Properties of Patient Reported Outcome
Measures (PROMS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Orestis Argyriou, Michail Chatzikonstantinou, Vanash Patel,
and Thanos Athanasiou
5 Quality of Life as Endpoint in Surgical Randomised
Controlled Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
Athina A. Samara
6 The Role of Patient Reported Outcomes Measures
(PROMS) and Health-Related Quality-of-Life (HRQoL) in
Economic Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
Wilfred Ifeanyi Umeojiako, Ahmer Mansuri,
Katherine-Helen Hurndall, and Christopher Rao
7 Quality of Life Following Bariatric and Metabolic Surgery . . . . 85
Alan Askari, Chanpreet Arhi, and Ravikrishna Mamidanna
8 Quality of Life after Upper GI Surgery . . . . . . . . . . . . . . . . . . . . 97
Grigorios Christodoulidis, Athina A. Samara,
and Michel B. Janho
9 Patient-Reported Quality of Life After Pancreatic
and Liver Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121
Nicole E. James, Eliana Kalakouti, Swathikan Chidambaram,
Tamara M. H. Gall, and Mikael H. Sodergren
10 Quality of Life in Head & Neck Surgical Oncology
and Thyroid Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
George Garas, Keshav Gupta, and Sameer Mallick
v
vi
11 Quality of Life and Patient Reported Outcomes in
Breast Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169
Kim Borsky and Fiona Tsang-Wright
12 Quality of Life After Colorectal Surgery . . . . . . . . . . . . . . . . . . . 181
Niamh A. Moynagh, George Malietzi, and Ailín C. Rogers
13 Quality of Life After Lung Cancer Surgery . . . . . . . . . . . . . . . . . 191
Thomas Tsitsias and Thanos Athanasiou
14 Health-Related Quality of Life and Patient Reported
Outcome Measures Following Transplantation Surgery . . . . . . . 215
Zoe-Athena Papalois and Vassilios Papalois
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241
Contents
Quality ofLife Theory
EshaKhanderia andVanashPatel
1
What Is Quality ofLife?
Quality of life (QOL) was rst described as “a
state of complete physical, mental and social
well-being, and not merely the absence of disease
and inrmity” by the World Health Organisation
(WHO) in 1948 [1]. This denition demonstrates
the multidimensional nature of QOL and highlights the wide range of factors which contribute
to QOL including physical and psychological
well-being and social circumstances such as education, access to healthcare, standard of living,
income, political climate and environment [2–4].
This is illustrated by Maslow’s Hierarchy of
Needs (Fig.1.1), which identies eight human
needs that are required to be fullled in order to
feel happy, healthy and able to function.
Lindstrom’s Quality of Life Model (Fig.1.2)
outlines the four main spheres of life experienced by all individuals that may impact quality of life [5, 6]. However, there is no universal
single denition of QOL and therefore it is subjective and difcult to measure. In view of
E. Khanderia (*)
Watford General Hospital, West Hertfordshire
Teaching Hospitals NHS Trust, Watford, UK
e-mail: esha.khanderia@nhs.net
V. Patel
Watford General Hospital, West Hertfordshire
Teaching Hospitals NHS Trust, Watford, UK
Imperial College London, London, UK
e-mail: vanash.patel06@imperial.ac.uk
varying and wide-ranging parameters, QOL is
often considered to be a vague and inconsistent
concept.
The denition of QOL has evolved since it
was rst described by the WHO in 1948 [1], it is
a dynamic concept as it is “modied by the developments, experiences and changes” that occur
throughout life [7]. The demographics of society
in the western world have also changed since
QOL was rst dened, which perhaps has in turn
inuenced the evolution of QOL theory. The evolution of QOL theory as a concept from 1948 to
the modern day is illustrated in Table1.1.
In addition to the evolving denitions of QOL
over the years, the signicance of QOL in medicine has increased exponentially over time as
demonstrated by the number of publications on
MEDLINE containing the term “quality of life”
from 1977 to date [14, 15].
The terms QOL and health related quality of
life (HRQOL) are often used interchangeably in
literature however their meanings are distinct
[16]. HRQOL was rst described as a concept in
the 1990s as “a functional effect of illness and its
treatment as perceived by the patient” [17].
Therefore, while QOL encompasses spheres of
life and general parameters within them such as
work, family and education, HRQOL focuses
more specically on the impact of disease on a
wide range of factors in a patient’s life which
include physical function, and the social and psychological burden of health and disease [18, 19].
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023
T. Athanasiou et al. (eds.), Patient Reported Outcomes and Quality of Life in Surgery,
https://doi.org/10.1007/978-3-031-27597-5_1
1
2
Fig. 1.1 Maslow’s
hierarchy of needs [5]
Sphere DimensionExamples
I. Global 1. Macro-environment
II. External 1. Work
III. Interpersonal 1. Family
IV. Personal 1. Physical
2. Human rights
3. Politics
2. Family standard of living
3. Residence, housing
2. Close relationships
3. Interpersonal
relationships
2. Psychological
3. Spiritual
Clean environment, democratic rights, etc.
Inheritance, parent background – knowledge provided to a child, influence for child’s
further education and dependence to social class; family income, nutrition, residence, type
of dwelling, etc.
Structure and function of social relationships – relationships with parents, other family
members, relatives, friends, society, etc.
Growth, personality development, activeness, self-respect, meaning of life, etc.
E. Khanderia and V. Patel
Fig. 1.2 Lindstrom’s general quality of life model, 1992 [6]
Traditionally, clinical outcomes such as morbidity and mortality were measured and considered to be indicators of population health.
However, with increased access to medical
treatment, education and technology, life expectancy has risen and is no longer thought to be
representative as a measurement of well-being.
The importance of considering HRQOL in disease, treatment, the impact on carers and life
expectancy due to the changing demographics
and availability of resources is imperative in
making decisions that are in the best interest of
patients [13].
Over the last 70 years since QOL was rst
described by the WHO, the population of the
United Kingdom (UK) has increased from 50
million to approximately 66.4 million [20]. Life
expectancy in the UK has also increased by an
average of 13 years since 1948 and the number of
co-morbid patients with chronic illnesses has
also increased. In the UK in 2016, 1.3 billion prescriptions were issued reecting the burden of
long-term conditions [21–23] on an increasingly
ageing population. Long term health conditions
are known to signicantly affect HRQOL as they
can alter the ability of individuals to retain their
1 Quality ofLife Theory
Table 1.1 Quality of life theory
Source Year QOL theory
World Health Organisation [1] 1948 “A state of complete physical, mental and social
well-being, and not merely the absence of disease
and inrmity”
Abraham Maslow [5] 1962 QOL theory developed from self-actualisation
theory and a theory of human motivation.
Maslow’s hierarchy of needs describes the eight
main needs of humans to be fullled in order to
feel happy, healthy and able to function. It is
suggested therefore that QOL is dependent on
these eight main needs (Fig.1.2)
Ventegodt [8] 1970 Integrative Quality of Life Theory which uses
subjective factors such as encompassing wellbeing,
satisfaction with life, happiness, meaning in life
and objective factors such as biological order,
realising of life potential, fullment of needs and
cultural norms to describe QOL
Calman [4] 1984 “Quality of life measures the difference, or the
gap, at a particular period of time between the
hopes and expectations of the individual and that
individual’s present experiences. Quality of life
can only be described by the individual, and must
take in to account many aspects of life.”
Cutter [9] 1985 “An individual’s happiness or satisfaction with life
and environment, including needs and desires,
aspirations, lifestyle preferences and other tangible
and intangible factors which determine overall
well-being.”
Feinstein [10] 1987 “Quality of life seems to be an umbrella term
covering a variety of concepts such as functioning,
health status, perceptions, life conditions,
behaviour, happiness, lifestyle, symptoms, etc.”
Lindstrom [6] 1992 There are four main spheres of life that encompass
a number of different dimensions. Each of these
dimensions contributes to quality of life (Fig.1.2)
Felce and Perry [11] 1995 “An overall general wellbeing that comprises
objective descriptors and subjective evaluations of
physical, material, social and emotional wellbeing
together with the extent of personal development
and purposeful activity, all weighed up by a
personal set of values”
Kagawa-Singer etal. [12] 2010 “QOL is a subjective, multidimensional experience
of well-being that is culturally constructed as
individuals seek safety and security, a sense of
integrity and meaning in life, and a sense of
belonging in one’s social network”
World Health Organisation [13] 2014 “An individual’s perception of their position in life
in the context of the culture and value systems in
which they live and in relation to their goals,
expectations, standards and concerns”
3
way of life prior to developing the illness.
However, HRQOL is a subjective descriptor as
personal assessment of health determines
HRQOL and therefore patients with the same
condition or illness can have a very different perception of their own HRQOL [24].
Disease burden and therefore healthcare needs
have changed since 1948. Since post-war Britain,
4
E. Khanderia and V. Patel
mortality from conditions such as heart disease,
tuberculosis and stroke have reduced [20, 21, 25,
26]. Public health initiatives on preventative
medicine and healthy living aimed at improving
HRQOL through diet, exercise, patient education
and accessibility of resources maybe partially
responsible for this reduction in mortality.
Despite the health improvement and reduction of
inequalities seen since the inception of the NHS,
cancer related deaths have risen from 16.8% in
1948 to 27.8% in 2017 [20, 21, 25, 26]. New
initiatives introduced in the last few decades for
cancer screening have enabled earlier detection,
prompt treatment, reduced mortality and
improved HRQOL with better outcomes for
patients.
Due to an ageing population, deaths from
“senility and dementia” have also risen [20, 21,
25, 26]. Better access to healthcare has meant
that people are living longer with disease due to
early diagnosis and treatment. As the age of the
population increases patients develop greater
comorbidities, with an accompanied decline in
cognitive ability and functional status. Physical
ability, independence and being able to carry out
activities of daily living (ADL) are important
contributors to HRQOL [27]. From a social perspective, due to immobility, frailty and comorbidities, with age many face isolation [28–30].
Similarly, signicant life events such as retirement or loss of life partners can have a signicant
impact on mental health and emotional wellbeing. All of these factors contribute to HRQOL.In
managing long term conditions people rely
increasingly on the support systems that have
been set up around them to support and enable
them to lead a fuller life. These can vary in magnitude between countries and cultures and subsequently are often difcult to quantify. Micro
environmental factors are also important for older
people, as many are accustomed to a routine and
their own surroundings. Uprooting or effecting a
change in the environment of older people especially those with cognitive impairment can affect
HRQOL and cause considerable distress. Older
individuals who have a level of education and
therefore an understanding about their own health
are associated with a better perception of HRQOL
[31]. In addition, personal satisfaction with health
is also associated with a better perception of
HRQOL [32]. Therefore, in unwell elderly
patients, it is important to look at the patient
holistically whilst taking into account comorbidities, age and issues around recovery [33].
In addition, there is improved understanding,
diagnosis and treatment of mental illnesses and
increased recognition of the link between mental
health and physical and social health [34].
Mental health has become a greater focus of
healthcare agendas and is of increasing importance as the cost to society due to related morbidity and mortality escalates. Support for those
with mental illness, treatment of conditions and
the impact on QOL has become more recognised
with an increased awareness in society. Certain
surgical subspecialties have recognised this and
implemented screening procedures prior to surgery. For example, in bariatrics and gender reassignment surgery an integration of preoperative
psychological assessments to assess suitability
for surgery has commenced after noting the
impact of mental health of individuals on
HRQOL and suitability for life changing medical interventions [35].
Measuring Quality ofLife
andAssociated Challenges
Measurement of HRQOL enables healthcare professionals to determine the impact of illness and
healthcare interventions on patients through
examination of differing aspects of their life and
not at mortality alone [36].
Different methods to measure HRQOL have
been developed over a number of years. HRQOL
measurement tools used today are based on three
main dimensions; social, functional and psychological indicators [37]. Social indicators are factors such as education, poverty, employment and
life expectancy that are used to measure social
progress within society [38]. Functional indica-
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