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“To know or not to know…?” Push and pull in ever smokers lung screening uptake decision‐making intentions

Wiley
Health Expectations
Authors:

Abstract and Figures

Background In the United States, lung cancer screening aims to detect cancer early in nonsymptomatic current and former smokers. A lung screening pilot service in an area of high lung cancer incidence in the United Kingdom has been designed based on United States trial evidence. However, our understanding of acceptability and reasons for lung screening uptake or decline in a United Kingdom nontrial context are currently limited. Objective To explore with ever smokers the acceptability of targeted lung screening and uptake decision‐making intentions. Design Qualitative study using semistructured focus groups and inductive thematic analysis to explore acceptability and uptake decision‐making intentions with people of similar characteristics to lung screening eligible individuals. Setting and participants Thirty‐three participants (22 ex‐smokers; 11 smokers) men and women, smokers and ex‐smokers, aged 50‐80 were recruited purposively from community and health settings in Manchester, England. Results Lung screening was widely acceptable to participants. It was seen as offering reassurance about lung health or opportunity for early detection and treatment. Participant's desire to know about their lung health via screening was impacted by perceived benefits; emotions such as worry about a diagnosis and screening tests; practicalities such as accessibility; and smoking‐related issues including perceptions of individual risk and smoking stigma. Discussion Decision making was multifaceted with indications that current smokers faced higher participation barriers than ex‐smokers. Reducing participation barriers through careful service design and provision of decision support information will be important in lung screening programmes to support informed consent and equitable uptake.
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162
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Health Expectations. 2019;22:16 2–1 7 2 .
wileyonlinelibrary.com/journal/hex
Received: 4 April 2018 
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Revised: 22 August 2018 
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Accepted: 24 Aug ust 2018
DOI : 10.1111/hex.12838
ORIGINAL RESEARCH PAPER
“To know or not to know…?” Push and pull in ever smokers
lung screening uptake decision- making intentions
Janet E. Tonge MPH, MA (Oxon)1| Melanie Atack1| Phil A. Crosbie MBChB, PhD2|
Phil V. Barber FRCP2| Richard Booton PhD, FRCP2| Denis Colligan MBChB, MRCGP1
This is an op en acces s article unde r the terms of the Creative Co mmons At tribution License, wh ich permits use, distr ibution and rep roduc tion in any medium ,
provide d the original wor k is properly cite d.
© 2018 The Aut hors Health Expectations published by John Wiley & Sons Ltd
The Nor th East Resea rch Ethics Comm ittee (ref: 15/NE /0313) gave et hical approva l.
1Macmill an Cancer Improvement
Partnershi p, Park way Business
Centre, Manche ster Health and Care
Commissioning, Manchester, UK
2North West Lung C entre, W ythe nshawe
Hospit al, Mancheste r Univer sity NH S
Foundat ion Trust, Manchester, UK
Correspondence
Janet E. Tonge, Leeds Institute of Healt h
Science s, Level 10, Worsley Building ,
University of Le eds, Clarendo n Way Leeds,
UK LS2 9NL .
Email: hs12jt@leeds.ac.uk
Present address
Janet Tonge, Le eds Institute of H ealth
Science s, Unive rsity of Leeds , UK
Melanie Atack, The Christie NHS Foundat ion
Trust, Mancheste r, UK
Funding information
The NHS lu ng cancer scree ning pilot
service which is linked to this stud y was
develop ed through the Ma cmillan Cancer
Improvement Par tner ship programme in
Manche ster wit h funding from Ma cmillan
Cancer Suppor t. Without the suppor t of
Macmill an and Manchester Heath and Care
Commissioning neither t his study nor the
NHS implementation screening pilot woul d
have taken p lace.
Abstract
Background: In the United States, lung cancer screening aims to detect cancer early in
nonsymptomatic current and former smokers. A lung screening pilot service in an area
of high lung cancer incidence in the United Kingdom has been designed based on
United States trial evidence. However, our understanding of acceptability and reasons
for lung screening uptake or decline in a United Kingdom nontrial context are currently
limited.
Objective: To explore with ever smokers the acceptability of targeted lung screening
and uptake decision- making intentions.
Design: Qualitative study using semistructured focus groups and inductive thematic
analysis to explore acceptability and uptake decision- making intentions with people
of similar characteristics to lung screening eligible individuals.
Setting and participants: Thirty- three participants (22 ex- smokers; 11 smokers) men
and women, smokers and ex- smokers, aged 50- 80 were recruited purposively from
community and health settings in Manchester, England.
Results: Lung screening was widely acceptable to participants. It was seen as offering
reassurance about lung health or opportunity for early detection and treatment.
Participant’s desire to know about their lung health via screening was impacted by
perceived benefits; emotions such as worry about a diagnosis and screening tests;
practicalities such as accessibility; and smoking- related issues including perceptions
of individual risk and smoking stigma.
Discussion: Decision making was multifaceted with indications that current smokers
faced higher participation barriers than ex- smokers. Reducing participation barriers
through careful service design and provision of decision support information will be
important in lung screening programmes to support informed consent and equitable
uptake.
KEYWORDS
health literacy, informed par ticipation, lung cancer, screening, smoking
    
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TONGE ET a l.
1 | INTRODUCTION
Despite fewer people smoking, lung cancer causes nearly 36 000
deaths annually in th e Un it ed Kin gd om (UK )1 with incidence rates fo re -
cast to inc re as e un ti l 2030 due to the ageing population and ri sk red uc-
tion times following smoking quits.2 How quickly lung cancer is found
is stron gly linked to sur vival times. 3 Just 17% of pe ople diagn osed with
stage IV lung cancer are alive 12 months later, compared to 83% diag-
nosed at stage I.4 Survival rates have not increased much over the last
four decades4 and late- stage diagnosis remains the experience of the
majority.1 Into this gloomy pic ture has come the results of the National
Lung Screening Trial (NLST)5 in the United States which reported 20%
fewer lung cancer deaths following yearly screening with low- dose
computerized tomography (LDCT) over 3 years compared to chest
X- rays in 53 456 high risk ever smokers.6 This led to the introduction
of lung cancer screening fo r 55- to 77- year- olds (if smoked for 30 pack-
years or more and were continuing or stopped within 15 years)7,8 in th e
United States and calls for screening to be introduced elsewhere.9–11
Lung cancer screening is not currently approved as a UK wide
programme,12 and questions have been asked about the balance of
harms and benefits from being screened.13 The UK Lung Screening
Study (UKLS), a pilot randomized control trial undertaken in the
Merseyside and Cambridgeshire areas with smokers and ex- smokers
aged 50 - 75, encouragingly reported 85.7% cancers were diagnosed
at stages I or II in its screening arm, but was underpowered to detec t
mortality impact.14 UK national policy with regard to lung screening
will be reviewed when European lung c ancer screening trial results
have been pooled.15 However, in the meantime funding for National
Health Service (NHS) lung screening pilots have been announced.16
It has been suggested that as LDCT scans are quick, painless
and identify treatable disease, screening should be publically ac-
ceptable, despite some radiation risk.17–1 9 Indications are that lung
screening invitees perceive screening benefits to include gaining
early treatment and relief from worry about having lung cancer but
not all invitees wish to be screened.2 0–2 2 Lung screening is unique
amongst cancer screening as it is looking for a disease closely linked
with smokin g which is strong ly stigmatized.18 Lung screening uptake
by smokers, often living in deprived areas, has been identified as a
particular challenge.2 3–2 7 Patel et al18 categorized nonresponders to
lung screening as “too old to be bothered,” “worriers,” “fatalists” or
“avoiders”. Avoiding finding out if cancer was present, perceptions
of personal risk, individual benefits, practical and emotional barri-
ers have all been identified as influences in lung screening uptake
decision making.14,21,22,28 Other studies have reported that current
smokers more than ex- smokers consider cancer a “death sentence”
expect less benefit from early detection and have higher uptake bar-
riers.15,17,22,29 Contrastingly, Cataldo30 reported that older smokers
were receptive to lung screening and suggested that further under-
standing of smokers’ views was needed.15,17,19,22,29 Our understand-
ing of the views of ever smokers about lung screening is currently
limited in a UK nontrial context.14,18 The only other lung screening
study exploring the views of ever smokers in UK nontrial context
which the authors are aware of found cancer fatalism, low lung
health expectations and smoking stigma as uptake barriers.19
To test the viability of lung screening outside of a research trial
context, an NHS pilot screening service has now taken place in
Manchester, England.31 This of fer ed a “lu ng hea lth che ck (risk asses s-
ment an d spirometry) to cu rrent and for me r sm okers age d 55- 74, wi th
no lung cancer diagnosis within 5 years and who were not on a pri-
mary care palliative care register. Appointments were in mobile facili-
ties in supermarket carparks. An LDCT scan was offered immediately
on site for individuals with a 1.51% lung cancer risk or higher in the
next 6 years unless they had a chest C T scan within 12 months. The
Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial risk
model (PLCOM2012) was used to estimate individual risk.32 Invitation
was by GP letter (not open access drop in) with explanatory informa-
tion. Results were by letter or follow- up hospital appointment.31 A
follow- up scan was offered 3 months after the first scan for individu-
als with indeterminate results. The first lung health checks and scan-
ning round took place in June 2016 to February 2017. All individuals
who had an initial scan were invited for a second scan 12 months later.
Baseline results from the first scan round were that 80% of lung can-
cers were found at stages I and II. This was a signific ant stage change
(P < 0.0001) compared to the same area the year before and allowed
89% of peo pl e where lun g ca ncer wa s found to be offered cu ra tive in -
tent treatment.31 Initial findings from this qualitative study (first four
focus groups held Febr ua ry to May 2016) informe d th in ki ng about the
Manchester pilot service design and its patient information materials.
2 | OBJECTIVES
The study objectives were to explore with ever smokers aged 50- 80
in Manchester:
1. The acceptability of lung screening via a lung health check
and LDCT scan
2. Influences on uptake intentions.
The main research question was:
Is a targeted approach to the early diagnosis of lung
can cer a cce p t a b le in a hi gh ris k Ma nch ester po p u l atio n?
Targeting refers to the lung screening eligibilit y criteria based on smok-
ing status, smoking history and age. “Acceptabilit y” was consid ered as pos-
itivity about the service in principle and expressed intent for use.
3 | METHODS
3.1 | Design, setting and participants
We undertook a qualitative study to explore lung screening ac-
ceptability and uptake decision making with people of similar
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characteristics to screening eligible individuals. Qualitative research
is a recog ni ze d wa y to explor e pote ntial ser vice use rs vi ew s33–35 and
assist in translating research to real- world practice.36 This is impor-
tant as most lung screening knowledge is from experimental set-
tings.21 The study setting was Manchester, a “postindustrial” city37
with significant deprivation, higher lung cancer incidence and lower
life expectancies than England averages.38 The study team included
members trained in qualitative techniques, with significant under-
standing of lung cancer and participant recruitment working within
Manchester’s NHS. In addition, wider academic expertise was
sought to help design and support the study, including people who
were able to provide relevant topic and methodological expertise.
Participant recruitment was undertaken in community venues and
NHS premises. Inclusion criteria were men and women, current and
former smokers, aged 50 - 8 0 (to reflect var iat ion across lung scre ening
initiatives) who had not had lung cancer. Posters advertising the study
were distributed widely by the Black Health Agency for Equality and
Manchester Health and Care Commissioning. An information sheet
explained the study and right to withdraw. Participants were recruited
using purposive sampling. When a person expressed interest, inclusion
criteria and characteristic criteria (gender, age, address deprivation,
working status and ethnicity) were checked to enable participant se-
lec tion an d target rec ruitm ent on sampl e gaps. A £10 gift voucher was
offered as participation thanks and travel expenses were refunded.
3.2 | Data collection
Data collection used semistructured focus groups to allow par-
ticipant interaction to generate understanding.3 9,4 0 To facilitate
freer expression and comparison, separate groups for smokers and
ex- smokers were held. Six groups (three for smokers and three for
ex- smokers) were held in accessible community locations (February
to June 2016). It was anticipated that given the study scope, this
would provide sufficient data without missing new insights.41 Each
group was mixed by gender, age, ethnicity and address deprivation.
The corresponding author acted as group moderator supported by
an assistant moderator. The topic guide included lung screening, lung
cancer beliefs and uptake intentions. Groups were audio- recorded,
transcribed verbatim and checked for accuracy. Participants were
given service information and asked what they would do if they re-
ceived a screening invite; responses were noted following a show
of hands.
3.3 | Analysis
To protect anonymity, pseudonyms were used and identifiable
information in transcripts extracted before uploading into com-
puter software N- Vivo 11 with characteristic information and ad-
dress deprivation from postcodes matched to Indices of Multiple
Deprivation levels.42 Inductive thematic analysis43 was chosen to
identify themes within data rather than use pre- existing literature
concepts.44 Analysis used Brau n an d Clarke’s re commended steps
for thematic analysis43 and was completed separately for smoking
and ex- smoking groups. Th is com me nced wit h data fa mi liarization
(listening to recordings and rereading transcripts). Early codes
were identified, added to transcript sections and reread to iden-
tify groups of similar comment s by the corresponding author. A
description of early categories was writ ten and the data checked
for correct inclusion by the corresponding author. Discussion
about the categories was held between the corresponding author
and assistant moderator. Initial themes43 were identified by the
corresponding author who considered categorized data to see
what patterns and linkages existed and discussed bet ween an in-
dependent researcher and the corresponding author. Theme iden-
tification and interpretation were assisted by “writing memos”,
“diagramming”45 and asking questions about significance, under-
pinning influences and implications.43 Participant characteris-
tics were also considered to identify any patterns and linkages.
Refinements were made by consensus until a final “thematic map”
was considered appropriate.43 Theme saturation was considered
to have taken place when additional data did not add new infor-
mation and theme explanations made sense to the corresponding
author and assistant moderator. Analysis after four groups was
compared with that from the final two groups to indicate when
sufficient data had been collected. Writing up included illustra-
tive participants’ quotes and discordant data.46 Analysis was
completed and presented to NHS organizations in Manchester
in October 2016. This study was written for publication follow-
ing publication of the baseline results from the Manchester Lung
Screening Pilot in 2018.31
4 | RESULTS
4.1 | Summary
Fifty- one par ticipants were recruited; however, 18 (11 smokers;
seven ex- smokers) dropped out leaving 33 participants (11 smok-
ers; 22 ex- smokers). Groups continued with reduced numbers.
Participants included men and women with mixed ages (age range:
50- 80) and socioeconomic backgrounds. Employment status varied;
around half were retired. The majority were ex- smokers and of white
ethnicit y. There were more male current smokers than female (eight
men; three women). Over two- thirds knew someone who had had
cancer, around a third for lung cancer. Demographic charac teristics
of participants are shown in Table 1 below.
While nearly all participants were supportive of lung screening
as an idea, many participants expressed a dilemma about whether to
be screened if the opportunity arose. Two main themes were found:
1. Acceptability: This was ab out par ticipant ’s vie ws of lung screening
as an idea.
2. Desire to know about personal lung health: This was about whether
participants wanted to find out about their individual lung health,
or not, via screening. Four subthemes were identified:
a. Benefits participants felt they would gain from screening
    
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TONGE ET a l.
b. Emotions such as worry about being diagnosed or undergoing
tests
c. Practicalities such as service accessibility
d. Smoking including perceived personal smoking risk and
stigma.
4.2 | Theme one: acceptability
This theme is about the acceptability of lung screening. Lung screen-
ing as a general idea was found to be widely acceptable and strongly
welcomed by nearly all participants. Many participants talked about
smoking and coughing as an indication that lung health was generally
poo r for them, th eir family or fri ends. Seve ra l recounte d exp er ience s of
family and friends with lung cancer dying quickly following diagnosis.
Oh, I think it’s a very good idea because I have two
brothers who - well we all grew up in a family of
smokers and beyond that even grandparents and -
but - well both my brothers live near x anyway so
that would be good and they’re still smoking and
terrible coughs. In fact their dad, actually their dad
died of lung cancer but he’d smoked from 12 to
82 and that wasn’t the only thing that was on his
de at h cer tif ic ate . It was li ke pn eu monia and - I’m not
that bothered about myself even though I smoked
but listening to them coughing, it’s awful, just like
their dad, he coughed all his life really and my life.
Female6ExsmokerFG2
In this context, lung screening was conceptualized as “an early
warning system” (Male1SmokerFG4, Male6SmokerFG6) and a way
to stay well in older age. Having your lungs checked via screen-
ing was considered a logical approach based on general screening
knowledge related to established screening programmes for other
diseases rather than lung screening specifically.
It’s like the bowel screening programme thing,
like that. It’s got to be beneficial hasn’t it?
Male4ExsmokerFG1
Many par ticipants were so enthused by the idea of lung screen-
ing that they felt the eligibility criteria, which were generally viewed
as cost- limiting measures, should be broadened to include older and
younger people. It was generally accepted that a screening service
was needed by smokers and ex- smokers. Concerns were raised in
most groups about excluding others considered to be at risk, such as
passive smokers and people exposed to industrial and environmen-
tal pollutants.
In terms of broadening the group, first of all, some
heavy smokers are diagnosed with lung cancer
before the age of 50. So, going further down, so
from maybe 45, if it could be afforded it might be a
TAB LE 1 Participants Demographic characteristics
Participants Gender (n) Age (n) Employment (n)
Cancer experience: not
lung cancera (n)
Cancer experience:
Lung cancerb (n) Ethnicity (n) Deprivationc (n)
Ex- Smoking participants
22 11 men
11 women
1 aged 50- 54
9 aged 55- 64
10 aged 65- 74
1 aged 75- 80
1 unknown
6 employed
11 retired
5 unknown
14 yes
8 no
7 yes
15 no
18 White British
1 White Other
1 South Asian
1 Black/African/Caribbean/Black British
1 Unknown
11 Most deprived
2 Moderately deprived
2 Average
3 Least deprived
4 Unknown
Smoking participants
11 8 men
3 women
5 aged 55- 64
6 aged 65- 74
0 employed
3 unemployed
6 retired
2 unknown
10 yes
1 no
5 yes
6 no
11 White British 8 Most deprived
0 Moderately deprived
1 Average
2 Least deprived
0 unknown
aCancer experience: not lung cancer refers to experiences of cancer personally or in family/friends.
bCancer experience: lung cancer refers to experiences of lung cancer in family/friends.
cAddress deprivation has been classified using the Indices of Multiple Deprivation 2015 for Lower Super Output Areas (LSOA) as follows: Most deprived—Address postcode in 10% and 20% most deprived
LSOA; Moderately deprived—Address postcode in 30% and 40% most deprived LSOA; Average—Address postcode in 50% most deprived LSOA; Least deprived—Address postcode 60% most deprived
LSOA or higher.
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good idea. But the other thing, the other category
is passive smokers, because in fact when I said be-
fore that one of the t wo friends I lost through lung
cancer recently one of them was a non- smoker. She
had been living with a heavy smoker for all her adult
life. So, she almost certainly did it, got it as a re-
sult of passive smoking. So you have to - when you
look at the risk factors, you have to factor that in.
Male10ExSmokerFG3
It’s more or less - it’s about smoking. What about
people let ’s say who’ve worked with asbestos and
things like that and never smoked in their lives?
Male2ExSmokerFG1
4.3 | Theme two: desire to know about personal
lung health
This theme is about whether participants would want to know per-
sonally if they had a lung disease via lung screening. Participant s
talk about whether they wanted to know, or not, about their lung
health was threaded through discussions about why they would or
would not use a screening service. Four subthemes were identi-
fied as follows: screening benefits; emotions; practicalities; and
smoking.
Having read a sample invitation letter and accompanying leaf-
lets, participants were asked what they would with do if they re-
ceived an invite. Par ticipants fell broadly into three groups—the
majority expressed a desire to be screened and roughly equal
numbers of the others were either undecided or would decline.
Those declining included participants who expressed positivity
about the lung screening idea. In this sample, the proportion of
smokers and ex- smokers expressing intention to be screened was
broadly similar. Making a decision to be screened for some par-
ticipants appeared quick and straightforward; for others, it was
more difficult or tentative. For some participants not knowing
about your lung health was considered a better choice than find-
ing out if you had a lung disease. The phrase “head in the sand”
(Female7ExsmokerFG2, Female2ExsmokerFG1) depicted this
nonparticipation choice.
Head in the sand I think. Yes, it’s like this idea of living
in ignor ance really which isn’t good but there is a ten-
dency for a lot of humans to be like that isn’t there?
Female7ExsmokerFG2
I think there’s a huge inertia about getting people to
go to these sort of things because they’re going to
get it [invite letter] and think ooh, do I really want to
know? Male3ExsmokerFG1
4.3.1 | Subtheme one: lung health check benefits
Participant views about the benefit s they could gain from being
screened appeared closely linked to their desire to know—or
not—about their personal lung health. Many participants, espe-
cially ex- smokers, were worried about smoking damage and felt
lung screening could provide them reassurance. For these partici-
pants, “peace of mind” (Female2ExsmokerFG1; Male5SmokerFG5
and Female3SmokerFG5) was a key benefit motivating screening
uptake.
Well it gives you a health check basically so it ’s good
to be reassured that your lungs are okay or it ’s good
to know there’s something wrong and you need to
seek further advice and get something done about it.
Male4E xsmoker FG1
Many participants felt that quick detection could result in a better
outcome if lung cancer was found. Personal experiences around other
cancers where early diagnosis had positive outcomes were recounted
in most groups. Participants who considered lung cancer treatable
if found early were generally keen to have their lungs screened.
Screening harms such as radiation risks were discussed by a minority in
one group only and considered as outweighed by the early treatment
opportunity.
See my outlook has really changed since I’ve been
through - over the last 5 years or so, it’s made my
change because I know that if I hadn’t done some-
th in g abo ut it I wou ldn’t be he re. Wel l I wo uld n’ t pr ob-
ably have given it what’s it but if I hadn’t have done
because a mate of mine had the same thing…[Over
speaking]…and he was what’s it - that I went and it
changed my outlook altogether. Male2SmokerFG4
However, several participants were concerned that screening
might re su lt in a se rious lun g ca nce r di ag nosis whe re treatm ent optio ns
were limited. For these participants, the opportunity to find out about
lung he al th did not of fe r much personal benefit. Some current smo kers
from deprived areas had par ticularly low lung and general health ex-
pectations and expressed fatalistic beliefs.
I know people that have been asked to go for check-
ups and this, that and the other and they think they’re
going to live forever. They’re only 42. When you get
into 55, you’re sort of thinking hang of a minute, I’ve
only got 10 years to go. Male6SmokerFG6
Correct. Not to retire, to lean over. Male7SmokerFG6
For a few participants, potential lung cancer symptoms were
viewed as a trigger point for screening uptake even though screening
was aimed at nonsymptomatic individuals. For one participant, with
    
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TONGE ET a l.
other diagnosed health conditions, screening was viewed negatively
due to higher concern about existing conditions.
I wouldn’t go and expect tests done if I didn’t have any
signs or anything. Female11ExSmokerFG3
I’ve already got multiple things to deal with medically
which are very stressful and burdensome. Do I want
another thing? Can I handle it? Maybe not. Not at my
age. So I would just leave it because I would also think
that it might not be very important in thinking of what
I already am going through. Female4ExSmokerFG1
4.3.2 | Subtheme two: emotions
It was clear from participant’s discussions that lung cancer screening
was an emotive topic. Anxiety was expressed about being diagnosed
with lung cancer following screening and about the screening process
itself. While many participants expressed some worry about smoking
damage which moti vated uptake, for others the fear of a cancer diagno-
sis loomed so large that they could not face finding out about their lung
health. Some par ticipants relayed stories of ignoring potential cancer
symptoms or nonparticipation in screening programmes due to fear.
It swelled up and so I’ll maybe have that checked out.
I said, it’ll be all right and I never mentioned it again
but it grew and grew and I used to wear a polo neck to
cover it because I thought it’s a cancer lump because
it went to about the size of my fist. Then my daughter
was born and I thought I’ll have to have this done for
the sake of my daughter. Because I was terrified of
all hospitals, anything to do with hospitals, you could
forget it, I’d rather suffer than go in if you know what
I mean? Male1SmokerFG4
Several participant s expressed anxiety about the process of
screening—attending hospital, undergoing screening tests and wait-
ing for results. The thought of interaction with doctors and medical
settings generated anxiety for several participants. Many participants
expressed anxiety about LDCT scans due to confusion with magnetic
resonance imaging scanning and claustrophobia; a few were con-
cerned about spirometry.
The tunnel put s me off. I’m claustrophobic and that
certainly doesn’t - I mean I’d still do it but I’d be petri-
fied. Male1ExsmokerFG1
But you do start to panic when you read like - and you
can’t breathe for 10 seconds. In your head you make
10 seconds into 10 minutes. Female7ExsmokerFG2
The Manchester one- stop community- based lung health check,
looking for a range of lung diseases not just cancer, seemed to help
reduce anxi et y and incr ease positivi ty towards upta ke. Just one part ic-
ipant suggested that leaving a little time between the health check and
a follow- up scan (if required) might be preferable.
I think that’s the frightening thing for people if you
think, oh, they’re just looking for cancer. Well that
tells you on here that we’re not, we’re just looking
for anything to do with your lungs. Because I think
saying - and you think it’s not just about cancer
it’s about your general lung health is a good thing.
Female5ExsmokerFG2
I’d prefer to go straight on, otherwise you go home
and panic and you get yourself worse, so you’re better
getting it done all at once. Female11ExSmokerFG3
When you’re told that maybe there’s something
wrong, you might want to step back a bit and just -
because it could be a little bit of a shock to you and
you think oh God, am I going to die next week sort of
thing. So maybe you want to go home and think about
it. Female10ExSmokerFG3
4.3.3 | Subtheme three: practicalities
Simple practicalities (location, booking speed and appointment avail-
ability) were identified as barriers to lung screening uptake by many
participants. For participants with positive, but tentative uptake in-
tentions, practical barriers would discourage uptake. A community-
based screening service was viewed positively for convenience, and
some participants suggested that this would increase the likelihood
of them being screened.
I might just ring, just see if they’re engaged. If
they’re engaged, forget it. Then I won’t ring back.
Male7SmokerFG6
Where they’re going to put this mobile what’s it? Say
it was on the supermarket and you were doing your
shopping and you saw that, if you could go in and get
it done. Male3SmokerFG4
4.3.4 | Subtheme four: smoking
Smoking, including stigma and smoking risk, was discussed in all
groups. For many, smoking was the key reason why they felt they
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would benefit from screening. However, for others smoking was a
participation barrier. While most participants recognized a link be-
tween smoking and lung cancer, several, especially current smokers,
talked extensively about pollut ants causing lung cancer and other’s
need for screening (due to coughing or heavier smoking) in ways
which suggested limited recognition or acknowledgement of per-
sonal smoking- related cancer risk.
So being healthy isn’t going to make sure you’re
going to be healthy when you get older. Because
it’s not just smoking what gives you lung cancer.
Male7SmokerFG6
Well we live in a bad area don’t we? I mean I grew up
when cotton mills were belching out smoke all over
the place, you couldn’t look into my village X when I
grew up. You went up on the moors and looked down
and it was in a fog. That’s what I grew up you know so
- and I think yeah, you know Glasgow and there’s a lot
of background radiation in Glasgow isn’t there from
the granite. Male3SmokerFG4
Many participants talked about screening as revealing the personal
impact of smoking and one suggested screening uptake required taking
personal responsibly for a health- damaging habit. A few participants
suggested that as smokers, they would be treated less sympathetically
by medical professionals should lung cancer be found.
It’s you, it’s a personal - why, the consequence of you
smoking. But you know that ever y time you took a
cigarette out the packet; you knew it’s detrimen-
tal to your health. So now we’re going to find out
proper, knock on the head, it was you and all them
years t aking responsibility for your consequences.
Female2ExsmokerFG1
I think that if you’re a smoker or an ex- smoker a lot of
doctors treat you like you’re a leper. It’s a dirty disease
because you smoke. Female5ExsmokerFG2
For some, mainly ex- smokers, lung screening was viewed as part
of pursuing healthier habits. Smoking cessation was not extensively
discussed; however, a few current smokers indicated a diagnosis would
prom pt qui t ti ng, and oth er s felt an all- cle ar wou ld sugg es t they st il l ha d
chance to improve their lung health through quitting.
5 | DISCUSSION
5.1 | Multifaceted decision making
There were multiple influences on participants’ uptake decision-
making intentions. This aligns with others findings1 8–20 as did the
reasons why some participants expressed a preference for screen-
ing (early diagnosis and potential reassurance) and some did not
(lu ng cancer dia gnosi s fear and low level s of percei ved persona l be n-
efit).17–19,22,29 Other studies have also found that waiting for results
and hospital attendance created anxiet y19, 21 ,3 0 and were participa-
tion barriers.18,21 However, there were differences with some of the
literature. In this study, while some participants expressed fatalism
and did not feel they would benefit due to low lung health expec-
tations and limited belief in treatment effectiveness, this was not
as widespread as indicated for London’s deprived area smokers.19
Many participants in our study expressed keenness to be screened
as this could result in finding lung cancer early and increase sur vival
chan ces. This is mor e in line with Cataldo’s findi ngs 30 and may relate
to this study’s more socioeconomically mixed sample or it is possible
that as the researchers were NHS employed with study participation
invitations arising from an NHS organization this may have reduced
negative comments. This was mitigated through building rapport
with participant s, the topic guide and seeking alternative views;
however, the researcher’s influence cannot be discounted.47 A fur-
ther difference to the London study was in the anxiety expressed
about screening tests, including the LDCT scan due to claustropho-
bia. Fear of having a CT scan was reported by Cat aldo30 and fear of
subsequent treatment by Carter- Harris et al.22
5.2 | Emotional barriers
In our study, the preference not to be screened was strongly linked
to a fe ar of be in g di ag no se d with lung can cer as has bee n fo un d el se -
where.18,19,21,22 Cancer worry was repor ted as an uptake barrier in
the UKLS for current smokers, women and people from more de-
prived areas where widespread negative experiences of lung cancer
may generate more pessimistic attitudes.21 ,48 In this study, we also
found that anxiety about personal disease risk motivated screening
uptake for some participants. The desire for “reassurance” via lung
screening has been found elsewhere17–1 9 including in other screen-
ing programmes where worr y has been reported as motivational for
some and a barrier for others.25 In view of the influence of worry
on lung screening uptake, the communication of survivorship sto-
ries, information about effective treatments and screening tests may
help reduce fear barriers.
5.3 | Smoking
In this study, similar proportions of smokers and ex- smokers ex-
pressed positive screening intent in response to viewing sample
invitational materials. However, some differences were indicated.
When asked what they would do with an invite letter, ex- smokers
expressed more definite positive screening intentions than current
smokers whose views appeared more tentative. Current smokers
also commonly talked about how other’s needed screening more
than they did, due heavier smoking or worse symptoms and em-
phasized pollution- related lung cancer causation. This suggested
personal smoking risks and screening need was being downplayed.
    
|
 169
TONGE ET a l.
However, some of these same participants were also extremely wor-
ried about a cancer diagnosis. This was so high for some, especially
current smokers, that they felt cancer would almost inevitably be
found if they were screened—as has been reported elsewhere.19
This seeming contradic tion supports Quaife et al’s49view that smok-
ers experience “cognitive dissonance”50 about continuing to smoke
while knowing its risks. It has been suggested that this results in bi-
ased thought processing51–5 5 distorting risks in “defensive denial”,56
not wanting to be faced with risk information, such as would be ap-
parent from attending lung screening.17–19, 2 2, 49, 57 The indication in
this study that lung screening uptake required facing- up to smoking
consequences supports this. In fact , “avoiders” were one of Patel’s
nonresponder types.18 However, this finding is tentatively presented
as there were fewer current smokers (11 smokers; 22 ex- smokers)
and a lower number of female current smokers (three women; eight
men) than planned due to participant drop out which limit s these
findings. We also need to consider that smokers are not a homog-
enous group and lung screening views may also vary with socioeco-
nomic status28 and other factors. For example, Hahn58 repor te d that
screening interest varies with quit intention with smokers actively
considering quitting more interested than others.
5.4 | An Informed choice?
Screening participation should be an “informed choice”,59–63 which
is a decision made with understanding about the disease being
screened for, possible treatments, harms and benefit s and in align-
ment with personal views.64 However, around half of NEL SON trial
invitees (a Dutch Belgium lung screening randomized control trial)
were reported to have insuf ficient knowledge of disease, personal
threat and screening processes to make well- founded choices with
lower knowledge levels about lung screening in nonparticipants than
participants.20 In our study, several participants appeared to have
limited knowledge or misunderstandings about the optimal time to
be screened (before symptoms were present), early diagnosis ben-
efits, screening relevant concepts (such as risk thresholds and smok-
ing pack- years) and some screening tests. Participant knowledge
came mainly from general cancer screening information rather than
that specific to lung cancer screening. Similar misunderstandings
and knowledge gaps have also been found in the United States.17
Our study’s participants commented that a decision to participate,
or not, in lung screening was their choice, but to be an “informed
choice,” improved participant knowledge is needed.17,19,62,63
In the United States, joint discussions between patients and
health care providers have been mandated by Medicare in the
lung screening process to support informed decision making.64
Suppor ting informed and equitable lung screening uptake is an an-
ticipated challenge in the UK.65,66 Decisions about screening uptake
require weighing up complicated information8,67 and a high degree
of “health literacy”,68 –71 the comprehension of health information in
order to make a well- founded choice. However, 43% of UK work-
ing age adults have been found to have difficulties understanding
written health information; 61% when numerical data are included.72
Poor levels of health literacy found have also been found in older
UK smokers,73 the key target group for lung screening. In the United
States, some decision aids have been developed and tested with
promising results for supporting decision making6 6, 6 8–7 1 ,7 4–7 8 ; how-
ever, the readability of online aids has been challenged79, 8 0 and
FIGURE1 “Push and pull” in the desire to know about lung health with lung screening practice recommendations
Explain screening tests
Use a lung health check format
which looks for a range of
respiratory illness not just cancer
Provide quick results
Use community settings
Provide an efficient booking service
Offer a wide range of timed
appointments
Use a one-stop shop format
Use venues which are easily
accessible
Provide a nonjudgemental service
Use 'its not too late' communication
messages
Consider how to include quitting
support without increasing stigma
Provide decision support information
and opportunities
Explain early diagnosis benefits
as well as harms
Incorporate positive patient
stories
Explain the benefits of not
waiting for symptoms
1. Smoking 3. Emotions
2. Benefits
4. Practicalities
Desire
to
know?
12
3
4
170 
|
   TONGE ET al.
further testing is needed.76,81 In the UK, there are currently no
guidelines for developing quality assured lung screening patient lit-
erature or established decision- making tools. Future research could
usefully consider the feasibility and impact of lung screening deci-
sion aids in a UK context.
5.5 | Push and pull in decision making
The desire to know about personal lung health in this study was
influenced by par ticipant’s views about benefits; emotions; smok-
ing; and practicalities. These appeared to motivate uptake for some
participants but were a barrier for others. For example, the anticipa-
tion that a lung health check would result in personal health ben-
efit encouraged uptake, but low benefit expectations discouraged
attendance. Worr y could either encourage lung screening or was an
obstacle. Practicalities about service access—their ease or difficulty
acted similarly. Smoking was a barrier to uptake where health risks
were downplayed or where stigma was felt, but was motivational
when risks were recognized and faced. Figure 1 below illustrates
this “push and pull” effec t on uptake decision- making intentions pic-
torially. This is important as it indicates points where public health
action and careful service design could minimize participation barri-
ers. Practice- based actions are suggested in Figure 1 relating to the
theme desire to know about personal lung health”. This draws on
the experience of the Manchester NHS lung screening pilot which
has recently repor ted its baseline findings.31
5.6 | Study strengths and limitations
Our study is useful to build understanding as lung screening pilots
are now being developed in the NHS31 and adds to the limited UK
evidence base outside of a trial contex t. However, these findings
should be considered limited by sample make- up and context47 in
this case a postindustrial city37 with high incidence lung cancer and
deprivation.38,82 Given the relatively small purposive sample, it is
also possible that participant s may have different views to the wider
population and that invitations from an NHS organization to par-
ticipate may have reduced expression of some negative screening
opinions. Focus group discussions sparked conversations revealing
insights but may have concentrated opinions.83 Alternative views
were sought, discordant data included and separate groups for cur-
rent and ex- smokers allowed free expression of views. The final
two groups did not produce additional themes, but confirmed those
found previously.
6 | CONCLUSION
This study suggests that lung screening was widely acceptable and
welcomed by participants with similar characteristics to the screening
target group. The desire to know about personal lung health was influ-
enced by emotions; benefit views; practicalities; and smoking. Current
smokers appeared to have higher uptake barriers than ex- smokers
and tackling this will be a key challenge in lung screening programmes.
Some barriers can be addressed at the ser vice level for which recom-
mendations have been made. Future research could helpfully explore
the effectiveness of different types of informational materials in sup-
po rti ng “info rmed parti ci patio n” and the views of smoker s fu r th er. Lung
health checks have the potential to open up early treatment benefits to
a high cancer risk group and reduce health inequalities. However, this
will only be possible if consideration is given to reducing the identified
barriers in future lung screening programmes.
ACKNOWLEDGEMENTS
Acknowledgement is needed for all involved with the Manchester
NHS Lung Health Check pilot service development of which this
study was a par t. Thi s has been a tr ul y multiagency and mult ispecia l-
ism development. This includes all in the Manchester Lung Screening
consortium. Particular thanks for help with this study are due to Val
Bayliss- Brideaux, Manchester Health and Care Commissioning and
Donna Miller, from The Black Health Agency for Equality for pub-
licizing the study and Jackie Rapkin, Manchester Health and Care
Commissioning, for administration support. Significant thanks are
also given to Dr Cathy Brennan, University of Leeds, for advice on
the study design and early analysis and to Dr Jo Ellins, University of
Birmingham, for analytic advice and manuscript comments.
CONFLICTS OF INTEREST
None declared.
ORCID
Janet Elizabeth Tonge http://orcid.org/0000-0001-9687-9184
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How to cite this article: Tonge JE, Atack M, Crosbie PA, Barber
P, Booton R, Colligan D. “To know or not to know…?” Push and
pull in ever smokers lung screening uptake decision- making
intentions. Health Expect. 2019;22:162–172. h t t p s: // do i .
org /10.1111/hex .12 83 8
... Stigma Stigma was found to relate to the condition in question, the diagnostic process itself, lifestyle factors associated with the condition and fear of being 'shunned' [26,27]. While fear of stigma extended to friends and family, it was also found that some non-participants feared being 'treated less sympathetically by medical professionals'; for instance, if lung cancer was found in smokers [39]. ...
... In studies related to colorectal cancer and lung cancer, a sense of responsibility to access diagnostic services was a common facilitator [26,27,29,39,40]. ...
... Some participants claimed that familial responsibility encouraged them to access diagnostic services. In some cases, participants desired remaining healthy so they could continue to support their family [26,39,40], while others desired not to burden them with an ill family member [26,27,40]. Participants from ethnic minority or migrant backgrounds also emphasised not wanting to waste NHS resources [26,27,29]. ...
Article
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Introduction To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review.
... Individual and interpersonal facilitators. Studies showed that individuals who were aware of early detection lung cancer screening [21][22][23][24][25][26][27][28][29][30][31], high perceived benefit [30,[42][43][44], motivation to quit smoking [32,33,38,45], provision of the mobile testing program and home test kits during COVID-19 [46], enthusiasm for lung cancer [28,[32][33][34]38,42,43,45,[47][48][49][50], a screening recommendation from a healthcare provider [30,33,38,45,51], and shared decisionmaking interaction between discussion [31,[52][53][54] were more supportive of screening and tended to be screened Table S1. ...
... Individual and interpersonal facilitators. Studies showed that individuals who were aware of early detection lung cancer screening [21][22][23][24][25][26][27][28][29][30][31], high perceived benefit [30,[42][43][44], motivation to quit smoking [32,33,38,45], provision of the mobile testing program and home test kits during COVID-19 [46], enthusiasm for lung cancer [28,[32][33][34]38,42,43,45,[47][48][49][50], a screening recommendation from a healthcare provider [30,33,38,45,51], and shared decisionmaking interaction between discussion [31,[52][53][54] were more supportive of screening and tended to be screened Table S1. ...
... Individual and interpersonal barriers. Studies showed that low awareness of lung screening [28,[30][31][32][33][36][37][38][39]41,44,45,48,50,[57][58][59], fear of cancer diagnosis, and worry [31][32][33][36][37][38]40,43,[45][46][47][48]54,58,60,61], low perceived benefit (feeling healthy) [30,37,48,62], concern or high perceived risk of LDCT [28,33,34,38,41,42,44,45,47,49,60], COVID-19 fear (perceptions of risk, mortality, worry, behavioral and psychosocial responses to COVID-19) [61,[63][64][65][66], anxiety of causing misunderstanding during a risk-benefit conversation [48,52], patient education (provider recommendation) [30,37,42,47,49,51,57,62,67], patient misunderstanding [36,50,62], and inadequate time [29,30,52,55,68] served as barriers to seeking screening Table S1. For example, a study of knowledge from high-risk communities and providers has shown that "a significant number of high-risk individuals have never heard of screening or that a primary care practitioner has never introduced the concept of screening to them" [31,38]. ...
Article
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Background: Participation in targeted screening reduces lung cancer mortality by 30–60%, but screening is not universally available. Therefore, the study aimed to synthesize the evidence and identify facilitators and barriers to lung cancer screening participation globally. Methods: Two reviewers screened primary studies using qualitative methods published up to February 2023. We used two-phase synthesis consistent with a meta-study methodology to create an interpretation of lung cancer screening decisions grounded in primary studies, carried out a thematic analysis of group themes as specific facilitators and barriers, systematically compared investigations for similarities and differences, and performed meta-synthesis to generate an expanded theory of lung cancer screening participation. We used the Social Ecological Model to organize and interpret the themes: individual, interpersonal, social/cultural, and organizational/structural levels. Results: Fifty-two articles met the final inclusion criteria. Themes identified as facilitating lung cancer screening included prioritizing patient education, quality of communication, and quality of provider-initiated encounter/coordination of care (individual patient and provider level), quality of the patient–provider relationship (interpersonal group), perception of a life’s value and purpose (cultural status), quality of tools designed, and care coordination (and organizational level). Themes coded as barriers included low awareness, fear of cancer diagnosis, low perceived benefit, high perceived risk of low-dose computerized tomography, concern about cancer itself, practical obstacle, futility, stigma, lack of family support, COVID-19 fear, disruptions in cancer care due to COVID-19, inadequate knowledge of care providers, shared decision, and inadequate time (individual level), patient misunderstanding, poor rapport, provider recommendation, lack of established relationship, and confusing decision aid tools (interpersonal group), distrust in the service, fatalistic beliefs, and perception of aging (cultural level), and lack of institutional policy, lack of care coordinators, inadequate infrastructure, absence of insurance coverage, and costs (and organizational status). Conclusions: This study identified critical barriers, facilitators, and implications to lung cancer screening participation. Therefore, we employed strategies for a new digital medicine (artificial intelligence) screening method to balance the cost–benefit, “workdays” lost in case of disease, and family hardship, which is essential to improve lung cancer screening uptake.
... These factors present challenges for successful implementation of targeted, organised LCS programs. Previous research suggests that individuals with current or former smoking histories are willing to undergo LCS [14,15] especially if the screening centre is nearby [15,16], is recommended by a clinician [17,18] and perceived to have potential improvements in health outcomes [15,19]. However multiple barriers impact on the decision to participate in LCS [17,20]. ...
... These factors present challenges for successful implementation of targeted, organised LCS programs. Previous research suggests that individuals with current or former smoking histories are willing to undergo LCS [14,15] especially if the screening centre is nearby [15,16], is recommended by a clinician [17,18] and perceived to have potential improvements in health outcomes [15,19]. However multiple barriers impact on the decision to participate in LCS [17,20]. ...
... These factors present challenges for successful implementation of targeted, organised LCS programs. Previous research suggests that individuals with current or former smoking histories are willing to undergo LCS [14,15] especially if the screening centre is nearby [15,16], is recommended by a clinician [17,18] and perceived to have potential improvements in health outcomes [15,19]. However multiple barriers impact on the decision to participate in LCS [17,20]. ...
Article
Full-text available
Introduction Participation in lung cancer screening (LCS) trials and real-world programs is low, with many people at high-risk for lung cancer opting out of baseline screening after registering interest. We aimed to identify the potential drivers of participation in LCS in the Australian setting, to inform future implementation. Methods Semi-structured telephone interviews were conducted with individuals at high-risk of lung cancer who were eligible for screening and who had either participated (‘screeners’) or declined to participate (‘decliners’) in the International Lung Screening Trial from two Australian sites. Interview guide development was informed by the Precaution Adoption Process Model. Interviews were audio-recorded, transcribed and analysed using the COM-B model of behaviour to explore capability, opportunity and motivation related to screening behaviour. Results Thirty-nine participants were interviewed (25 screeners; 14 decliners). Motivation to participate in screening was high in both groups driven by the lived experience of lung cancer and a belief that screening is valuable, however decliners unlike their screening counterparts reported low self-efficacy. Decliners in our study reported challenges in capability including ability to attend and in knowledge and understanding. Decliners also reported challenges related to physical and social opportunity, in particular location as a barrier and lack of family support to attend screening. Conclusion Our findings suggest that motivation alone may not be sufficient to change behaviour related to screening participation, unless capability and opportunity are also considered. Focusing strategies on barriers related to capability and opportunity such as online/telephone support, mobile screening programs and financial assistance for screeners may better enhance screening participation. Providing funding for clinicians to support individuals in decision-making and belief in self-efficacy may foster motivation. Targeting interventions that connect eligible individuals with the LCS program will be crucial for successful implementation.
... Stakeholders referred to the important role GPs play in increasing health literacy. A lack of GP capacity has also been previously reported in a United Kingdom (UK) study to be a barrier for lung cancer screening, particularly in culturally diverse communities with lower socio-economic status (33). This emphasises the need for a screening program that considers health literacy and is focused on health equity to reduce health disparities. ...
Article
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Background Lung cancer screening with low-dose computed tomography has been started in some high-income countries and is being considered in others. In many settings uptake remains low. Optimal strategies to increase uptake, including for high-risk subgroups, have not been elucidated. This study used a system dynamics approach based on expert consensus to identify (I) the likely determinants of screening uptake and (II) interactions between these determinants that may affect screening uptake. Methods Consensus data on key factors influencing screening uptake were developed from existing literature and through two stakeholder workshops involving clinical and consumer experts. These factors were used to develop a causal loop diagram (CLD) of lung cancer screening uptake. Results The CLD comprised three main perspectives of importance for a lung cancer screening program: participant, primary care, and health system. Eight key drivers in the system were identified within these perspectives that will likely influence screening uptake: (I) patient stigma; (II) patient fear of having lung cancer; (III) patient health literacy; (IV) patient waiting time for a scan appointment; (V) general practitioner (GP) capacity; (VI) GP clarity on next steps after an abnormal computed tomography (CT); (VII) specialist capacity to accept referrals and undertake evaluation; and (VIII) healthcare capacity for scanning and reporting. Five key system leverage points to optimise screening uptake were also identified: (I) patient stigma influencing willingness to receive a scan; (II) GP capacity for referral to scans; (III) GP capacity to increase patients’ health literacy; (IV) specialist capacity to connect patients with timely treatment; and (V) healthcare capacity to reduce scanning waiting times. Conclusions This novel approach to investigation of lung cancer screening implementation, based on Australian expert stakeholder consensus, provides a system-wide view of critical factors that may either limit or promote screening uptake.
... Our findings suggest that helping individuals with high risk for lung cancer may require strategies such as those used for smoking cessation that emphasize the benefits of screening as well as the reduced quality of life associated with a lung cancer diagnosis [43]. Due to the potential denial of the real risks of smoking among individuals who smoke, future work to explore differences in screening barriers between individuals who smoke and those who smoked in the past would also be worthwhile [44,45]. ...
Article
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Background Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision‐making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. Aim This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. Methods We elicited patient perspectives by showing a provider‐facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient‐facing SDM tool. Results The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient‐facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient–provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. Conclusion These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. Patient or Public Contribution Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.
... Fedewa and colleagues estimate that only 6.5% of eligible Americans receive the recommended screening by low-dose computed tomography (LDCT). a To understand the reasons for low rates of LCS apart from the public's lack of knowledge, research has focused on why eligible patients may avoid the procedure [1][2][3][4][5][6] or why clinicians (NPs, APRNs, DOs, MDs) may decide against recommending LCS to their patients. [6][7][8][9][10] While individual level barriers help explain why specific types of patients and clinicians may opt out of LCS, it remains less clear that these barriers sufficiently explain the wide gap in screening uptake on their own. ...
Article
Although lung cancer claims more lives than any other cancer in the United States, screening is severely underutilized, with <6% of eligible patients screened nationally in 2021 versus 76% for breast cancer and 67% for colorectal cancer. This article describes an effort to identify key reasons for the underutilization of lung cancer screening in a rural population and to develop interventions to address these barriers suitable for both a large health system and local community clinics. Data were generated from 26 stakeholder interviews (clinicians, clinical staff, and eligible patients), a review of key systems (Electronic Health Record and billing records), and feedback on the feasibility of several potential interventions by health care system staff. These data informed a human-centered design approach to identify possible interventions within a complex health care system by exposing gaps in care processes and electronic health record platforms that can lead patients to be overlooked for potentially life-saving screening. Deployed interventions included communication efforts focused on (1) increasing patient awareness, (2) improving physician patient identification, and (3) supporting patient management. Preliminary outcomes are discussed.
... Despite low awareness of lung screening opportunities in the reviewed literature, there was strong support in principle for lung screening, and a broader awareness of the link between early detection and improved survival rates [56]. For example, Lowenstein et al. found in a qualitative study with 42 screening eligible patients that participants were in favour of screening, found it acceptable, and related screening to prevention and early detection [44]. ...
Article
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Background Targeted lung cancer screening is effective in reducing mortality by upwards of twenty percent. However, screening is not universally available and uptake is variable and socially patterned. Understanding screening behaviour is integral to designing a service that serves its population and promotes equitable uptake. We sought to review the literature to identify barriers and facilitators to screening to inform the development of a pilot lung screening study in Scotland. Methods We used Arksey and O’Malley’s scoping review methodology and PRISMA-ScR framework to identify relevant literature to meet the study aims. Qualitative, quantitative and mixed methods primary studies published between January 2000 and May 2021 were identified and reviewed by two reviewers for inclusion, using a list of search terms developed by the study team and adapted for chosen databases. Results Twenty-one articles met the final inclusion criteria. Articles were published between 2003 and 2021 and came from high income countries. Following data extraction and synthesis, findings were organised into four categories: Awareness of lung screening, Enthusiasm for lung screening, Barriers to lung screening, and Facilitators or ways of promoting uptake of lung screening. Awareness of lung screening was low while enthusiasm was high. Barriers to screening included fear of a cancer diagnosis, low perceived risk of lung cancer as well as practical barriers of cost, travel and time off work. Being health conscious, provider endorsement and seeking reassurance were all identified as facilitators of screening participation. Conclusions Understanding patient reported barriers and facilitators to lung screening can help inform the implementation of future lung screening pilots and national lung screening programmes.
... There is a strong consistency in our findings with the growing body of evidence looking at attitudes to screening and screening behaviour, across a range of screening programmes and for lung screening in particular, in the United Kingdom and beyond. [26][27][28] LDCT screening for lung cancer is largely unheard of in Scotland but has a high degree of acceptability more broadly, or among those who have participated in screening. 27,29,30 There was an evident awareness among participants of the benefits of early detection and thus support for lung screening, in line with other research. ...
Article
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Introduction Targeted lung cancer screening is effective in reducing lung cancer and all‐cause mortality according to major trials in the United Kingdom and Europe. However, the best ways of implementing screening in local communities requires an understanding of the population the programme will serve. We undertook a study to explore the views of those potentially eligible for, and to identify potential barriers and facilitators to taking part in, lung screening, to inform the development of a feasibility study. Methods Men and women aged 45–70, living in urban and rural Scotland, and either self‐reported people who smoke or who recently quit, were invited to take part in the study via research agency Taylor McKenzie. Eleven men and 14 women took part in three virtual focus groups exploring their views on lung screening. Focus group transcripts were transcribed and analysed using thematic analysis, assisted by QSR NVivo. Findings Three overarching themes were identified: (1) Knowledge, awareness and acceptability of lung screening, (2) Barriers and facilitators to screening and (3) Promoting screening and implementation ideas. Participants were largely supportive of lung screening in principle and described the importance of the early detection of cancer. Emotional and psychological concerns as well as system‐level and practical issues were discussed as posing barriers and facilitators to lung screening. Conclusions Understanding the views of people potentially eligible for a lung health check can usefully inform the development of a further study to test the feasibility and acceptability of lung screening in Scotland. Patient or Public Contribution The LUNGSCOT study has convened a patient advisory group to advise on all aspects of study development and implementation. Patient representatives commented on the focus group study design, study materials and ethics application, and two representatives read the focus group transcripts.
... One final consideration regarding language is the way the programme is described or named. Previous research has trialled the term "M.O.T for your lungs" and considered "Lung Health Check", however, these are expected to have varying degrees of impact [23,52]. Using such terms was suggested as a possible means to overcome guilt associated with smoking in our study and ranked reasonably high as a possible facilitator, indicating there is possibly further research needed on this concept. ...
Article
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Background Lung cancer is the most common cause of cancer death in the UK. Low-dose computed tomography (LDCT) screening has been shown to identify lung cancer at an earlier stage. A risk stratified approach to LDCT referral is recommended. Those at higher risk of developing lung cancer (aged 55 + , smoker, deprived area) are least likely to participate in such a programme and, therefore, it is necessary to understand the barriers they face and to develop pathways for implementation in order to increase uptake. Methods A 2-phased co-design process was employed to identify ways to further increase opportunity for uptake of a lung cancer screening programme, using a risk indicator for LDCT referral, amongst people who could benefit most. Participants were members of the public at high risk from developing lung cancer and professionals who may provide or signpost to a future lung cancer screening programme. Phase 1: interviews and focus groups, considering barriers, facilitators and pathways for provision. Phase 2: interactive offline booklet and online surveys with professionals. Qualitative data was analysed thematically, while descriptive statistics were conducted for quantitative data. Results In total, ten barriers and eight facilitators to uptake of a lung cancer screening programme using a biomarker blood test for LDCT referral were identified. An additional four barriers and four facilitators to provision of such a programme were identified. These covered wider themes of acceptability, awareness, reminders and endorsement, convenience and accessibility. Various pathway options were evidenced, with choice being a key facilitator for uptake. There was a preference (19/23) for the provision of home test kits but 7 of the 19 would like an option for assistance, e.g. nurse, pharmacist or friend. TV was the preferred means of communicating about the programme and fear was the most dominant barrier perceived by members of the public. Conclusion Co-design has provided a fuller understanding of the barriers, facilitators and pathways for the provision of a future lung cancer screening programme, with a focus on the potential of biomarker blood tests for the identification of at-risk individuals. It has also identified possible solutions and future developments to enhance uptake, e.g. Embedding the service in communities, Effective communication, Overcoming barriers with options. Continuing the process to develop these solutions in a collaborative way helps to encourage the personalised approach to delivery that is likely to improve uptake amongst groups that could benefit most.
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Introduction There is limited research exploring how smoking cessation treatment should be implemented into lung cancer screening in the United Kingdom. This study aimed to understand attitudes and preferences regarding the integration of smoking cessation support within lung cancer screening from the perspective of those eligible. Methods Thirty‐one lung cancer screening eligible individuals aged 55–80 years with current or former smoking histories were recruited using community outreach and social media. Two focus groups (three participants each) and 25 individual telephone interviews were conducted. Data were analysed using the framework approach to thematic analysis. Results Three themes were generated: (1) bringing lung cancer closer to home, where screening was viewed as providing an opportunity to motivate smoking cessation, depending on perceived personal risk and screening result; (2) a sensitive approach to cessation with the uptake of cessation support considered to be largely dependent on screening practitioners' communication style and expectations of stigma and (3) creating an equitable service that focuses on ease of access as a key determinant of uptake, where integrating cessation within the screening appointment may sustain increased quit motivation and prevent loss to follow‐up. Conclusions The integration of smoking cessation into lung cancer screening was viewed positively by those eligible to attend. Screening appointments providing personalized lung health information may increase cessation motivation. Services should proactively support participants with possible fatalistic views regarding risk and decreased cessation motivation upon receiving a good screening result. To increase engagement in cessation, services need to be person‐centred. Patient or Public Contribution This study has included patient and public involvement throughout, including input regarding study design, research materials, recruitment strategies and research summaries.
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Background. Recent policy changes require discussing the potential benefits and harms of lung cancer screening with low-dose computed tomography. This study explored how current and former smokers value potential benefits and harms after watching a patient decision aid, and their screening intentions. Methods. Current or former smokers (quit within 15 years) with no history of lung cancer watched the decision aid and responded to items assessing the value of potential benefits and harms in their decision making, and their screening intentions. Results. After viewing the decision aid, participants (n = 30; mean age 61.5 years, mean 30.4 pack-year history) were well-informed (mean 80.5% correct responses) and rated anticipated regret and finding cancer early as highly important in their decision (medians >9 out of 10), along with moderate but variable concerns about false positives, overdiagnosis, and radiation exposure (medians 7.0, 6.0, and 5.0, respectively). Most participants (90.0% to 96.7%) felt clear about how they personally valued the potential benefits and harms and prepared for decision making (mean 86.7 out of 100, SD = 21.3). After viewing the decision aid, most participants (90%) intended to discuss screening with their doctor. Limitations. The study is limited to current and former smokers enrolled in a tobacco treatment program, and it may not generalize to other patient populations. Conclusions. The majority of current and former smokers were strongly concerned about anticipated regret and finding cancer early, while concerns about radiation exposure, false positives, and overdiagnosis were variable. After viewing the decision aid, current and former smokers reported strong preparedness and intentions to talk with their doctor about lung cancer screening with low-dose computed tomography.
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Background: Cancer screening-related decisions require patients to evaluate complex medical information in short time frames, often with primary care providers (PCPs) they do not know. PCPs play an essential role in facilitating comprehensive shared decision making (SDM). Objective: To develop and test a decision aid (DA) and SDM strategy for PCPs and high-risk patients. Design: The DA was tested with 20 dyads. Each dyad consisted of one PCP and one patient eligible for screening. A prospective, one-group, mixed-method study design measured fidelity, patient values, screening intention, acceptability and satisfaction. Results: Four PCPs and 20 patients were recruited from an urban academic medical centre. Most patients were female (n = 14, 70%), most had completed high school (n = 15, 75%), and their average age was 65 years old. Half were African American. Patients and PCPs rated the DA as helpful, easy to read and use and acceptable in terms of time frame (observed t = 11.6 minutes, SD 2.7). Most patients (n = 16, 80%) indicated their intent to be screened. PCPs recommended screening for most patients (n = 17, 85%). Conclusions: Evidence supports the value of lung cancer screening with LDCT for select high-risk patients. Guidelines endorse engaging patients and their PCPs in SDM discussions. Our findings suggest that using a brief, interactive, plain-language, culturally sensitive, theory-based DA and SDM strategy is feasible, acceptable and may be essential to effectively translate and sustain the adoption of LDCT screening recommendations into the clinic setting.
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Abstract Background The United States Preventive Services Task Force (USPSTF) issued recommendations for older, heavy lifetime smokers to complete annual low-dose computed tomography (LDCT) scans of the chest as screening for lung cancer. The USPSTF recommends and the Centers for Medicare and Medicaid Services require shared decision making using a decision aid for lung cancer screening with annual LDCT. Little is known about how decision aids affect screening knowledge, preferences, and behavior. Thus, we tested a lung cancer screening decision aid video in screening-eligible primary care patients. Methods We conducted a single-group study with surveys before and after decision aid viewing and medical record review at 3 months. Participants were active patients of a large US academic primary care practice who were current or former smokers, ages 55–80 years, and eligible for screening based on current screening guidelines. Outcomes assessed pre-post decision aid viewing were screening-related knowledge score (9 items about screening-related harms of false positives and overdiagnosis, likelihood of benefit; score range = 0–9) and preference (preferred screening vs. not). Screening behavior measures, assessed via chart review, included provider visits, screening discussion, LDCT ordering, and LDCT completion within 3 months. Results Among 50 participants, knowledge increased from pre- to post-decision aid viewing (mean = 2.6 vs. 5.5, difference = 2.8; 95% CI 2.1, 3.6, p
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Lung cancer screening with low-dose CT can save lives. This European Union (EU) position statement presents the available evidence and the major issues that need to be addressed to ensure the successful implementation of low-dose CT lung cancer screening in Europe. This statement identified specific actions required by the European lung cancer screening community to adopt before the implementation of low-dose CT lung cancer screening. This position statement recommends the following actions: a risk stratification approach should be used for future lung cancer low-dose CT programmes; that individuals who enter screening programmes should be provided with information on the benefits and harms of screening, and smoking cessation should be offered to all current smokers; that management of detected solid nodules should use semi-automatically measured volume and volume-doubling time; that national quality assurance boards should be set up to oversee technical standards; that a lung nodule management pathway should be established and incorporated into clinical practice with a tailored screening approach; that non-calcified baseline lung nodules greater than 300 mm3, and new lung nodules greater than 200 mm3, should be managed in multidisciplinary teams according to this EU position statement recommendations to ensure that patients receive the most appropriate treatment; and planning for implementation of low-dose CT screening should start throughout Europe as soon as possible. European countries need to set a timeline for implementing lung cancer screening.
Article
Objective: Following the findings of the National Lung Screening Trial, several national societies from multiple disciplines have endorsed the use of low-dose chest CT to screen for lung cancer. Online patient education materials are an important tool to disseminate information to the general public regarding the proven health benefits of lung cancer screening. This study aims to evaluate the reading level at which these materials related to lung cancer screening are written. Materials and methods: The four terms "pulmonary nodule," "radiation," "low-dose CT," and "lung cancer screening" were searched on Google, and the first 20 online resources for each term were downloaded, converted into plain text, and analyzed using 10 well-established readability scales. If the websites were not written specifically for patients, they were excluded. Results: The 80 articles were written at a 12.6 ± 2.7 (mean ± SD) grade level, with grade levels ranging from 4.0 to 19.0. Of the 80 articles, 62.5% required a high school education to comprehend, and 22.6% required a college degree or higher (≥ 16th grade) to comprehend. Only 2.5% of the analyzed articles adhered to the recommendations of the National Institutes of Health and American Medical Association that patient education materials be written at a 3rd- to 7th-grade reading level. Conclusion: Commonly visited online lung cancer screening-related patient education materials are written at a level beyond the general patient population's ability to comprehend and may be contributing to a knowledge gap that is inhibiting patients from improving their health literacy.
Article
We report baseline results of a community-based, targeted, low-dose CT (LDCT) lung cancer screening pilot in deprived areas of Manchester. Ever smokers, aged 55–74 years, were invited to ‘lung health checks’ (LHCs) next to local shopping centres, with immediate access to LDCT for those at high risk (6-year risk ≥1.51%, PLCOM2012 calculator). 75% of attendees (n=1893/2541) were ranked in the lowest deprivation quintile; 56% were high risk and of 1384 individuals screened, 3% (95% CI 2.3% to 4.1%) had lung cancer (80% early stage) of whom 65% had surgical resection. Taking lung cancer screening into communities, with an LHC approach, is effective and engages populations in deprived areas.