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• In general, it required 3-6 months to return to pre-operative baseline status after minimally-invasive procedures (VATS) and 6-
• Social support post lung resection plays a significant role in patient’s recovery and reported QOL outcomes
13 Quality ofLife After Lung Cancer Surgery
211
Cancer QLQ-C30 (EORTC QLQ-C30) [45], the
short-from (SF) 36 [46], SF-12 [47], the MD
Anderson Symptom Inventory – Lung Cancer
[48], the Hospital Anxiety and Depression Scale
(HADS) [49], the Functional Assessment of
Cancer Therapy-Lung (FACT-L) [50], and the
15D score [51].
Limitations oftheStudies
The timing of postoperative HRQOL follow-up
ranged signicantly from 1 month to 7.2 years.
The completeness rate of the follow-up ranged
signicantly between the studies from 30.0 to
100% and was ≥75% in 25 (65.7%) studies. The
majority of the 38 studies reviewed were observational with only 4 (10.5%) having an element
of randomization, of which one (ROSEL)
included only 22 patients. The SABR and sublobar resection populations often present with
multiple co-morbidities which usually exclude
them from other approaches. Absence of randomization has contributed to signicant differences
of baseline characteristics between the cohorts.
The HRQOL instruments used differed signicantly, making it more difcult to compare outcomes between interventions and patient groups.
During the last decade, thoracic surgery has
witnessed a rapid development of surgical techniques as well as new devices that have helped to
improve patient- related outcomes. A signicant
number of studies included patients operated
more than 20 years ago, in some cases including
techniques and approaches that are out of favour
nowadays.
Conclusion
Surgery for NSCLC is performed on a large
number of patients of varying age groups and
co-morbidities. Summarizing the ndings of
the studies included in our chapter (Fig.13.3),
it is conrmed that HRQOL outcomes following lung resection are acceptable. Minimally
invasive procedures are associated with an
improved physical activity and pain scores.
Within the high-risk group of patients who
underwent SABR the results remain comparable. Sublobar resections have recently been
shown to have equivalent survival to lobectomy patients [52]and studies comparing these
approaches have shown a superiority in terms
of physical activity for the lesser resections.
We believe it is important to identify factors
that can affect the QOL post operatively since
it will help both surgeons and patients in their
decision- making process especially in the current era of different therapeutic approaches
applicable on lung cancer patients. However,
the studies included in this chapter varied signicantly in their follow-up duration and time
points of their HRQOL measurements. We support that future randomized studies should
include such measurements preoperatively and
12 following thoracotomy
• Minimally invasive approaches (VATS, RATS) should be offered to patients with early stage (I-II) lung cancer
• Preoperative patient factors that can predict poor post operative HR-QOL results are smoking status after surgery, low
• Lesser lung resection (wedge, segmentectomy) has been associated with better post operative HR-QOL results compared to
Fig. 13.3 Summary of key points
preoperative FEV1, Cardiac & Respiratory comorbidities, Diabetes Mellitus, Age >65 years
pneumonectomy
212
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T. Tsitsias and T. Athanasiou
at 1 month, 1 year and 2 years post operatively.
Also, a common HRQOL instrument could
support direct comparisons between techniques
(VATS vs. RATS, sublobar vs. lobectomy, uniportal vs. multi-portal).
Summary of Key Points
• In general, it required 3–6 months to return to
pre-operative baseline status after minimally-
invasive procedures (VATS) and 6–12 follow-
ing thoracotomy
• Minimally invasive approaches (VATS,
RATS) should be offered to patients with early
stage (I–II) lung cancer
• Preoperative patient factors that can predict
poor post operative HR-QOL results are
smoking status after surgery, low preoperative
FEV1, Cardiac & Respiratory comorbidities,
Diabetes Mellitus, Age >65 years
• Lesser lung resection (wedge, segmentec-
tomy) has been associated with better post
operative HR-QOL results compared to
pneumonectomy
• Social support post lung resection plays a sig-
nicant role in patient’s recovery and reported
QOL outcomes
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Health-Related Quality ofLife
andPatient Reported Outcome
Measures Following
Transplantation Surgery
Zoe-AthenaPapalois andVassiliosPapalois
14
Introduction
Transplantation surgery represents one of the
greatest achievements in modern medicine. Solid
organ transplantation in patients with end-stage
organ failure promises not only to extend life but
to improve its quality. Nevertheless, the presence
of new challenges, such as ageing populations
with multiple comorbidities and the organ shortage crisis have the potential to signicantly inuence outcomes in transplantation [1]. Furthermore,
each patient journey follows a unique course,
inuenced by a plethora of biological, psychological, and social variables. These have the
capacity to inuence patients’ perception of the
value of transplantation. Health- Related Quality
of Life (HRQOL) outcomes and Patient-Reported
Outcome Measures (PROMs) aim to be tools to
capture the unique features of each case and confer insights into the ways in which transplantation
can affect different groups, allowing us to address
new challenges with greater preparedness.
This chapter presents the effects of solid organ
transplantation (kidney, liver, heart, lung) on the
Z.-A. Papalois (*)
Faculty of Life Sciences and Medicine, King’s
College London, London, UK
e-mail: z.papalois@nhs.net
V. Papalois
Department of Surgery, Faculty of Medicine, Imperial
College London, London, UK
e-mail: vassilios.papalois@nhs.net
quality of life of recipients and living donors.
Studies reporting on pancreas transplantation are
included in the section discussing kidney transplantation, as most studies report on outcomes
for simultaneous kidney-pancreas recipients. A
similar approach has been used with regard to
small bowel transplantation, which are most
commonly performed in the context of combined
liver-bowel transplants.
Background
The Role ofHRQOL-PROMS
inTransplantation
Elective and emergency operations constitute one
of the largest and most resource-demanding elements in healthcare. Therefore, it is essential to
optimise the efciency and effectiveness of the
associated clinical pathways. QoL outcomes and
PROMs can be used to inform quality improvement initiatives and improve decision making
regarding the allocation of resources and the
direction of efforts.
In 2009, the Department of Health in the
United Kingdom mandated the inclusion of
PROMs as service delivery metrics for certain
elective surgical procedures [2]. On a global
scale, the International Consortium for Health
Outcomes Measurement (ICHOM) has reiterated the importance of incorporating PROMS as
© 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_14
215
216
Inventory (BDI) etc., Fatigue Severity Scale.
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Z.-A. Papalois and V. Papalois
tools to measure HRQOL in promoting ‘valuebased’ outcome measures and developing international standards of quality assurance in
transplantation [3].
In the context of transplantation, monitoring
patient progress through clinical criteria or biomarker reports provides myopic insights into the
impact of a disease or treatment on the patient
and their quality of life. Formal outcome measures aim to capture the perceived success of
transplantation from the patients’ perspective.
For instance, patients may report low HRQOL
despite a well-functioning graft [4]. In addition,
in recent decades, there has been an overall practical and ideological shift in the role of transplantation from longevity-oriented outcomes to a tool
for transforming HRQOL. Pivotal to this paradigm shift are the organ shortage crisis and the
evolving patient demographics, with a rise of
older transplant recipients and the increased use
of grafts from ‘sub-optimal’ or extended criteria
donors [5]. Consequently, HRQOL-PROMS data
provide patients with the opportunity to report
their symptom-burden and treatment-burden
effects. Such insights are invaluable for health-
care systems aiming to foster a patient-centred
approach and allowing transplant programmes to
evolve and adapt to the needs and demands of
patients [6]. Notably, HRQOL and PROMS are
different to approaches such as Patient Reported
Experience Measures (PREMS) that aim to capture the views of the patients regarding specic
elements of service provision (i.e. quality of the
hospital facilities, friendliness of the staff) and do
not capture patient experience related to a specic therapeutic intervention.
Assessment Tools forMeasuring
HRQOL-PROMS inTransplantation
HRQOL-PROMS tools aim to provide an ‘aerial’
view of a patient’s physical, mental and social
wellbeing as well as life-participation, through
formal assessment tools with validated psychometric properties. Such tools can be subdivided
into generic (e.g. SF-36, EQ-5D, PROMIS-29
etc.) [7–9] and disease-specic or symptom specic instruments (e.g. BDI, ESRD-SCL etc.) [10,
11] (Fig.14.1).
Holistic QoL Assessments
•SF-36 (Vitality, physical functioning, bodily pain, general health, physical role functioning, emotional
role functioning, social role functioning and mental health)
•SF-12 is a condensed version covering similar domains
• EQ-5D (Mobility, self-care, usual activities, pain/discomfort, anxiety/depression and global health)
• PROMIS-29 (Depression, anxiety, physical function, pain interference, fatigue, sleep disturbance
and ability to participate in social roles and activities)
• WHOQOL-100 (Physical, psychological, level of independence, social relationships, environment,
spirituality.) etc.
Disease Specific Assessments
• e.g. KTQ, Minnessota Living with Heart Failure Questionnaire, Liver Disease QOL etc.
• Can be used in independently or as adjuncts to generic HRQOL PROMS tools.
Symptom Specific Assesments
• Can report single symptoms e.g. Hospital Anxiety and Depression Score (HADS), Beck Depression
Fig. 14.1 General HRQOL PROMs, disease-specic PROMs and symptom-specic PROMs tools
14 Health-Related Quality of Life and Patient Reported Outcome Measures Following Transplantation…
217
The choice of instrument depends on logisti-
cal factors, such as:
• Time available for completion
• Response burden (the amount of effort or
input required from the patient to complete the
questionnaire)
• Infrastructure available to implement and
interpret questionnaires
• Ability to sustain consistent follow up
• Patient factors (e.g. literacy levels, cognitive
function, access to electronic devices etc.)
• Research domains that healthcare professionals wish to investigate.
Studies may also choose to combine a generic
QoL tool and a disease or symptom specic tool
to provide both a specic and holistic view of the
issue being examined. To achieve the greatest
impact, HRQOL should be measured at regular
intervals, allowing for identication of trends and
clinically meaningful changes in health and/or
disease status over time, also known as the
‘responsiveness’ of the instrument [12, 13].
Materials andMethods
transplantation were included. Case reports and
review articles were excluded. Articles about
‘autologous transplantation’ and allotransplantation were included. Articles that were not in
English were excluded.
Outcomes ofInterest andData
Extraction
From each study, the following data was
extracted: author, year of publication, data collection period, study type, study objectives, sample size, location of study, type of transplant,
participant characteristics, evidence of preoperative HRQOL assessment and follow-up
HRQOL, intervals at which HRQOL was measured, HRQOL instrument, completion, nonHRQOL outcomes, main HRQOL ndings and
study quality (Table14.1).
Quality Score
The methodological quality of studies was
assessed using a standardised 10-item checklist,
as reported by Tan etal. [15].
Search Strategy
A systematic search was conducted in AugustSeptember 2021 using PubMed, using the following search terms: (‘patient-reported outcome
measures’ OR ‘patient-reported outcome’) OR
(‘quality of life’ OR ‘Health-Related Quality of
Life’ OR ‘QoL’ OR ‘HRQOL’) AND (‘transplantation’ OR ‘kidney transplant’ OR ‘liver transplant’ OR ‘lung transplant’ OR ‘heart transplant’).
The Preferred Reporting Items for Systematic
Reviews and Meta-Analyses guidelines were followed [14, 15].
Inclusion/Exclusion Criteria
There were no limitations set on the type of
transplantation, sample size or date of study
completion. Articles relating to solid organ
Table 14.1 Methodological quality scoring criteria
(adapted from [15])
A Socio-demographic and medical data are
described (e.g. age, race etc.)
B Inclusion and/or exclusion criteria formulated
C The process of data collection is described (e.g.
interview or self-report)
D The results are compared between two groups or
more (e.g. healthy populations, groups with
different treatments or ages)
E Participation and response rates for groups have to
be described as >75%
F Information is presented about patient/disease
characteristics of respondents and
non-respondents
G A standardised or valid QOL questionnaire is used
H Results are not only described for QOL but also
the physical, psychological and social domains
I Mean, median, standard deviations or percentages
are reported for most of the outcome measures
J Patients signed an informed consent form before
study participation
218
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Z.-A. Papalois and V. Papalois
Results
The initial literature search produced 541 results.
Based on the inclusion/exclusion criteria, 178
papers were included in the nal analysis (kidney
transplantation = 33.7%, liver transplantation =
43.8%, Heart transplantation = 10.7%, Lung
transplantation = 11.8%). The total number of
patients from all the papers was 44420.
The vast majority of papers were prospective
and observational studies (67.6%). From all the
papers, a cross-sectional design (64.6%) or a
cohort design (32%). A small proportion were
randomised controlled trials (2.8%). Quality
scores ranged from 2 to 9, with an average score
of 7. A pre-operative assessment was only performed in 24% of studies.
Most studies used more than one instrument,
often combining general and symptom-specic
questionnaires. A summary of the different
HRQOL instruments encountered in different
studies included in this review can be found in
Table14.2, and Figs.14.2 and 14.3.
HRQOL andPROMS inKidney
Transplantation
Background
Renal transplantation is a catalytic therapeutic
intervention in patients with end-stage renal disease (ESRD). Before accessing transplantation,
patients are started on renal replacement therapy
(RRT) and are placed on the waiting list until an
organ is available. The matching process takes
into consideration patient characteristics, such as
age and comorbidities. However, the nonstandardised candidate evaluation criteria are frequently centre-specic, resulting in disparities in
waiting periods and variable time on RRT.This
means that there is signicant variation in the
health status and characteristics of transplant
candidates. In recent decades, there have been
efforts to lower transplantation thresholds and
offer grafts to older or medically complex
patients. This potentially inuences patient and
graft survival, as well as the incidence of hospital
readmissions and quality of life outcomes [16].
Table 14.2 Disease specic and symptom specic HRQOL-PROM instrumentsISEASE SPECIFIC HRQOL-PROM
INSTRUMENTS
Organ Disease specic HRQOL-PROM instruments Symptom-specic
Kidney ReTransQoL
KDQOL-SF
KTQ-25
TxEQ
Liver EUROTOLD
PeLTQL
SF-LDQ
LDQOL-Q
NIDDK-QOL
CLDQ
Heart Heart Transplant stressor scale
Organ Transplant Symptom and Wellbeing
Instrument
Cardiac specic Ferrans and Powers’ Quality of
Life
Minnesota Living with Heart Failure questionnaire
Lung TxEQ-D
SGRQ
Borg Symptoms Score
30/60
36/78
Nov-19
17/21
10
15
20
25
30
35
40
45
50
General HRQOL PROMS Tool in Relation to Transplant
Kidney Liver Heart Lung
14 Health-Related Quality of Life and Patient Reported Outcome Measures Following Transplantation…
General HRQOL-PROMS Instruments
Paediatric HRQOL-PROMs
assessment tools
(KISCREEN-27, CHQCF87/PF50, Peds-QL)
RAND
1%
MQOL
1%
Nottingham Health Profile
Euroqol 5D
3%
3%
13%
SF-36
SF-12
EQ-5D
219
Whoqol-Bref
6%
EQ-5D
2%
SF-12
4%
SF-36
67%
Fig. 14.2 Summary of the general HRQOL PROMS tools included
Type
5
0
Whoqol-Bref
Euroqol 5D
Nottingham Health Profile
MQOL
Fig. 14.3 General HRQOL PROMs instruments used-solid organ breakdown
220
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
Z.-A. Papalois and V. Papalois
Overall
• Graft-failure, recommencement of dialysis and re-transplantation do not significantly influence QoL.
•Non-adherence to immunosuppressive regimens is related to poor psychological processing of the transplant.
Symptoms
• ESRD symptoms improve after transplantation but fatigue persists.
• Patients with combined organ transplantation e.g. simultaneous-kidney pancreas and comorbidities such as
obesity and diabetes increase the intensity of these symptoms.
•High incidence of anxiety, PTSD, and psychogenic physical health problems e.g. sexual dysfunction, sleep
disturbances.
Physical Health
• Low baseline levels of pre-operative fitness, frailty and post-operative steroids predict poor physical health
outcomes.
• Lack of physical exercise despite improved exercise tolerance may be related to concerns about graft failure.
•Mental Health
• Female gender, lack of social support and pharmacological management of depression contribute to poor mental
health outcomes in ESRD and renal transplant patients.
Social & Employment Outcomes
• Employment is essential to overall QoL. Male recipients achieve better social and employment outcomes.
•Patients who are medically-complex, female or from low-income households are at high risk of poor outcomes.
Donor QoL
•In the long-term, living kidney donors have better QoL than the general population.
• Temporary reduction in QoL immediately after donation due to higher levels of pain and longer recovery time
than anticipated, especially amongst female, non-White and middle-aged patients.
• Majority of donors have no regrets about the procedure.
•Paediatric QoL
• Global improvement in physical, mental, educational and social wellbeing.
•Paediatric patients should be encouraged to maintain high levels of physical exercise to maintain physical and
mental wellbeing in adulthood.
Fig. 14.4 Summary of HRQOL-PROMs in kidney transplantation
Overall QoL Outcomes
A summary of the factors affecting HRQOL in
kidney transplant patients can be found in
Fig. 14.4. Overall, kidney transplantation
improves the physical health and tness outcomes. There is mixed evidence about the QoL
outcomes of renal transplant recipients compared
to those of the general population an compared to
other solid organ transplant recipients [17–19].
This may be due an emphasis on clinical postoperative outcomes and end-points such as cessation
of dialysis, as well as biomarker criteria e.g.
reduction in creatinine, rather than QoL outcomes
and post-operative support [18, 19]. Furthermore,
adverse transplant outcomes, such as graft failure,
leading to re-commencement of dialysis or RRT
does not lead to a signicant reduction in QoL
compared to the pre-transplant status, as these
patients scored similarly to patients not previously transplanted [18, 19]. Post-transplant factors that inuence QoL include medication
non-adherence and the presence of medical complications or critical illness [20]. In addition,
problematic psychological processing of the lifechanging transplant event is a risk factor for nonadherence to post-transplant regimens [21].
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