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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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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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TONGE ET al.
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.
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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
FIGURE1 “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
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