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Deep prosthetic joint infection:
a qualitative study of the impact
on patients and their experiences
of revision surgery
Andrew J Moore, Ashley W Blom, Michael R Whitehouse,
Rachael Gooberman-Hill
To cite: Moore AJ, Blom AW,
Whitehouse MR, et al. Deep
prosthetic joint infection:
a qualitative study of the
impact on patients and their
experiences of revision
surgery. BMJ Open 2015;5:
e009495. doi:10.1136/
bmjopen-2015-009495
▸Prepublication history for
this paper is available online.
To view these files please
visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2015-009495).
Received 22 July 2015
Revised 18 September 2015
Accepted 20 October 2015
Musculoskeletal Research
Unit, School of Clinical
Sciences, University of
Bristol, Southmead Hospital,
Bristol, UK
Correspondence to
Dr Andrew J Moore;
a.j.moore@bristol.ac.uk
ABSTRACT
Objectives: Around 1% of patients who have a hip
replacement have deep prosthetic joint infection (PJI)
afterwards. PJI is often treated with antibiotics plus a
single revision operation (1-stage revision), or
antibiotics plus a 2-stage revision process involving
more than 1 operation. This study aimed to
characterise the impact and experience of PJI and
treatment on patients, including comparison of 1-stage
with 2-stage revision treatment.
Design: Qualitative semistructured interviews with
patients who had undergone surgical revision
treatment for PJI. Patients were interviewed between
2 weeks and 12 months postdischarge. Data were
audio-recorded, transcribed, anonymised and analysed
using a thematic approach, with 20% of transcripts
double-coded.
Setting: Patients from 5 National Health Service (NHS)
orthopaedic departments treating PJI in England and
Wales were interviewed in their homes (n=18) or at
hospital (n=1).
Participants: 19 patients participated (12 men, 7
women, age range 56–88 years, mean age 73.2 years).
Results: Participants reported receiving between 1
and 15 revision operations after their primary joint
replacement. Analysis indicated that participants made
sense of their experience through reference to 3 key
phases: the period of symptom onset, the treatment
period and protracted recovery after treatment. By
conceptualising their experience in this way, and
through themes that emerged in these periods, they
conveyed the ordeal that PJI represented. Finally, in
light of the challenges of PJI, they described the need
for support in all of these phases. 2-stage revision had
greater impact on participants’mobility, and further
burdens associated with additional complications.
Conclusions: Deep PJI impacted on all aspects of
patients’lives. 2-stage revision had greater impact than
1-stage revision on participants’well-being because the
time in between revision procedures meant long
periods of immobility and related psychological
distress. Participants expressed a need for more
psychological and rehabilitative support during
treatment and long-term recovery.
INTRODUCTION
In the UK in 2013, approximately 80 000
primary hip replacements were performed,
the majority of which were for osteoarthritis
(91%).
1
Hip replacements aim to alleviate
pain and improve mobility. However, in the
UK, around 0.5–1% of patients receiving
total hip replacement subsequently develop
deep prosthetic joint infection (PJI), a poten-
tially serious and devastating complication.
23
Deep PJI occurs within the joint area rather
than at the superficial wound. Infections
occurring up to 2 years after surgery are
usually acquired during the operation, while
infections occurring beyond 2 years are pre-
dominantly acquired through or carried in
the blood.
4
Patients with PJI may have diverse
symptoms, including inflammation, pain, loss
of function, discharge from the surgical
wound, fever, nausea and malaise.
4–6
Left
untreated, infections can result in severe
pain, joint dislocation, disability and death.
Strengths and limitations of this study
▪This study contributes new information about
the impact on patients of deep prosthetic joint
infection (PJI) and its treatment.
▪A sample size of 19 patients allowed for a wide
variety of experiences, theoretical saturation and
a robust analysis.
▪The sample was derived from five National
Health Service (NHS) orthopaedic departments
ensuring results are transferable to other con-
texts, although inclusion of further study sites
might have raised new issues.
▪The use of a cross-sectional study design means
there may be patient recall bias as the period
between interview and last operation varied from
2 weeks to 12 months though the impact of PJI
remains long term.
Moore AJ, et al.BMJ Open 2015;5:e009495. doi:10.1136/bmjopen-2015-009495 1
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Surgical site infection (SSI) after any type of surgery
has been characterised as “an event that inflicted deep
suffering and changed the physical, emotional, social
and economic aspects of life in extremely negative
ways.”
7
Comparing patient outcomes in those with
uncomplicated total joint replacement and those with
infected joints, Cahill et al
8
found that outcomes for
pain, stiffness, function and mental health and social
functioning in those with infection were unfavourable.
Current treatment options for infection after hip
replacement may involve non-surgical treatment with
antibiotics, with the addition of surgical removal of
dead, damaged and infected tissue (debridement). If
this is unsuccessful at removing infection then revision
surgery is recommended, in which the original pros-
thesis is removed and replaced. In more established
cases of infection, revision surgery may also be the first
option for treatment. There are two kinds of revision
surgery used to treat an infection, once more conserva-
tive treatments have failed. This may be either a one-
stage or a two-stage process. In a one-stage revision
process, the infected joint and tissue is removed, a new
artificial joint is fitted and the patient is treated with
antibiotics. A two-stage revision involves two operations.
In the first, the infected joint and tissue is removed and
a course of antibiotics is given to treat the infection.
A temporary implant or ‘spacer’may be fitted and the
patient is without a permanent replacement artificial
joint for some months. During this interim period,
people have varying degrees of mobility even without a
joint. When the infection has been cleared, a new artifi-
cial joint is fitted in a second operation usually followed
by a further course of antibiotics (box 1).
4910
Decision-making about which type of revision surgery
is complex and involves multiple factors including age,
comorbidities, the type of bacteria causing the infection,
and the surgeon’s expertise and experience with types
of revision surgery.
Although previous studies indicate that SSI causes suf-
fering, and that PJI after hip replacement negatively
affects outcomes, no research has characterised the
impact of PJI and treatment on patients who have
undergone hip replacement. This study aims to describe
patients’experiences and the impact of revision treat-
ment for PJI after hip replacement and to compare
patient experiences of one-stage with two-stage revision
surgery. This information is crucial to the future design
of interventions that may improve patients’well-being
and outcomes.
METHODS
Study design
To explore experiences of PJI, we conducted semistruc-
tured interviews with 19 patients who had received
either a one-stage or two-stage surgical revision for PJI in
the past 12 months.
Inclusion criteria: Age 18+ years, experienced PJI and
assigned to either one-stage or two-stage revision surgery
at one of five participating National Health Service
(NHS) orthopaedic departments in the preceding
12 months.
Exclusion criteria: Unable to provide informed consent.
Sampling, recruitment and consent
To reduce recall bias, we only approached patients who
had received revision treatment up to 12 months previ-
ously. Lists of patients attending outpatient clinics were
reviewed by a member of the clinical care team. This
team member then examined referral and follow-up
letters to identify patients who had received one-stage or
two-stage revision treatment for infection after hip
arthroplasty in the previous 12 months. Potential partici-
pants were sent information packs, and asked to com-
plete and return a reply form to the research team if
they were interested in taking part. The researcher
(AJM) then contacted potential participants and
arranged to visit them to discuss the study and to
conduct an interview if they agreed to take part.
Immediately before interview, potential participants had
the opportunity to ask questions about the study before
providing their written consent to participate, including
to audio-recording and publication of anonymised quo-
tations. All interviews took place in patients’homes,
except one that took place on hospital premises.
Thirty-four patients were approached and 19 agreed
to take part, with the final sample size determined by
achievement of saturation during the iterative analysis
process, described below. Patients were sampled purpos-
ively using phenomenal variation to ensure a roughly
equal number of patients who had received either one-
stage or two-stage revision surgery.
11
The sample com-
prised 9 patients who had undergone one-stage surgical
revision and 10 who had undergone two-stage surgical
revision, 12 men and 7 women, aged 56–88 years (mean
age 73.2 years; table 1).
Interview process
Interviews took place immediately after consent had
been provided. All interviews were conducted by AJM,
Box 1 One-stage and two-stage revision treatment
One-stage revision
▸In a one-stage revision, the infected prosthesis is removed,
and the wound debrided (removing infected tissue) before a new
replacement prosthesis is fitted, during the same procedure (ie,
under the same anaesthetic)
Two-stage revision
▸In a two-stage revision, the replacement of the prosthesis is
delayed, typically for 3–6 months while treating with antibiotics.
During this period a ‘spacer’made of antibiotic loaded cement or
a temporary prosthesis is implanted enabling local delivery of
antibiotics and to maintain tissue length. Alternatively no spacer
is used. The prosthesis is then replaced during a second
operation.
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an experienced qualitative methodologist. Interview
topic guides were developed in collaboration with the
research unit’s patient and public involvement forum.
12
The interviewer used the topic guide flexibly to ensure
that topics were covered but participants also had the
chance to discuss issues of particular importance to
them. Questions addressed included experience of PJI,
experience of revision surgery and care, impact of infec-
tion and treatment, and thoughts about recovery and
the future. Questions were similar for both treatment
groups with the exception of an additional question
about the time between operations for those who
received two-stage surgery.
Although 9 patients had received one-stage revision
treatment, and 10 had received two-stage revision treat-
ment, the recurrent nature of infection meant that 2
patients (Anthony and Francis) had experienced both
types of revision treatment. For those patients, their
experience of one-stage and two-stage treatment was
explored in interviews. Immediately after the interview,
field notes were written to record immediate impressions
and thoughts about the interview.
Patients were interviewed once. Interviews lasted from
30 to 119 min (mean 64 min), were audio-recorded,
transcribed, anonymised and imported into the QSR
NVivo qualitative data management software package.
13
Analysis
Data were analysed using thematic analysis.
14
Analysis
started with reading and re-reading of transcripts, fol-
lowed by inductive coding and grouping of coded data
into themes and subthemes, with further refinement to
ensure internal coherence (fit within the pattern of the
theme) and externally for representativeness (fit within
the whole data set).
14
Coding of all transcripts was
conducted by the interviewer, with four transcripts inde-
pendently double-coded by another experienced qualita-
tive researcher (RG-H), and codes discussed, agreed and
then applied to the data set with ongoing refinement as
needed. Data from participants in the one-stage and two-
stage groups were first analysed separately to allow any
differences in experiences between individuals and
between the groups to become apparent. During ana-
lysis, field notes provided context to the interview data,
ensuring full understanding of transcribed material.
Analysis and data collection took place concurrently,
and analysis stopped once saturation had been
achieved.
15
All names are pseudonyms.
RESULTS
The results showed a wide variation in the experiences
of the participants who reported receiving between 1
and 15 revision operations after their primary joint
replacement (table 2).
They explained that these included revision for pros-
thetic joint failure (wear) and complications associated
with previous joint surgery (dislocation of prosthesis,
femoral fracture associated with surgery) as well as revi-
sion for infection. Infection and treatment occurred
over periods ranging from 12 months to over 10 years
(table 2). Two patients reported that they expected to
live indefinitely with infection with lifelong antibiotics
despite receiving multiple surgical treatments.
Analysis indicated that participants made sense of
their experience through reference to three key phases:
the period of symptom onset, the treatment period and
protracted recovery after treatment. By conceptualising
their experience in this way, and through subthemes
that emerged in these phases, they conveyed the ordeal
that PJI represented. Finally, in light of the challenges of
infection, they described the need for support in all of
these phases (figure 1).
All subthemes within the three key phases and those
relating to the need for support are described in turn
alongside comparisons between the experiences of those
receiving one-stage or two-stage revision. Box 2 presents
illustrative quotations that correspond with each
subtheme.
Symptom onset
Insidious nature
Infection occurred either after a primary hip replace-
ment, or after revision surgery for instance for worn,
loose or dislocated prosthesis. Infection could occur
immediately or shortly after the operation, but some par-
ticipants developed infection many years later, which
they found particularly unsettling. Signs and symptoms
included severe pain, red, inflamed and sore wounds,
and abscesses which burst and wept pus or fluids, and
could be painful but also socially embarrassing. For
instance, Ray initially had a pump fitted to drain fluid
Table 1 Sample characteristics
Pseudonym Gender Age Revision procedure
Frances Female 68 One stage
Agatha Female 81 One stage
Simon Male 83 One stage
Anthony Male 83 One stage
Rory Male 78 One stage
Bill Male 88 One stage
Roger Male 68 One stage
Jim Male 56 One stage
Harry Male 84 One stage
Catherine Female 67 Two stage
Lorna Female 69 Two stage
Wendy Female 60 Two stage
Amelia Female 84 Two stage
Maggie Female 69 Two stage
Robert Male 70 Two stage
David Male 80 Two stage
Don Male 69 Two stage
Charles Male 59 Two stage
Ray Male 76 Two stage
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Table 2 Treatment trajectory of patients with prosthetic joint infection
Pseudonym and
revision type Treatment trajectory
David 2 Primary hip replacement 2011
Infection symptoms appeared in 2013
Managed for 3–4 months with dressings
Two hospital stays to receive intravenous antibiotics, totalling 2 weeks—unsuccessful
Referred to Treatment Centre 4—received first stage of a two-stage revision in 2013
Twelve months later still satisfied with ‘temporary’hip
Number of operations after primary hip replacement=1
Catherine 2 Primary hip replacement 2004
Replaced again in 2009
After 10 ‘dislocations’referred to Treatment Centre 5. Hip replaced again in 2013
After 1 week, Catherine was in severe pain after her replacement and returned to Treatment
Centre 5, with infection
Two unsuccessful debridement operations
Two-stage revision with spacer implant for 10 weeks. Final second stage was September 2014
Number of operations after primary hip replacement=6
Lorna 2 Primary hip replacement 2007—metal on metal
Experienced some pain for the following 4 years but thought it was nothing serious. Eventually
her leg ‘gave way’as the top of her femur broke off. Referred to Treatment Centre 5—broken
bone fragment removed and new prosthesis inserted
Leg began to shorten as stem subsided into medullary cavity as bone was dying
Hip replaced again with longer stem at which point an infection was introduced
Hip debrided and implant retained—unsuccessful
Two-stage revision—during the insertion of the spacer her femur was fractured (only discovered
afterwards via X-ray) and subsequently the second stage was done after only 1 week during
which screws were inserted to hold femur together
Number of operations after primary hip replacement=5
Wendy 2 Fractured hip in 2010 but did not realise until 12 months later when she slipped in the shower
and also fractured her femur for which she was X-rayed
Emergency hip replacement—infection introduced
Low-grade infection went undiagnosed before sepsis occurred. Near fatal
Two-stage revision with spacer
Spacer dislocated after 2 weeks and was replaced
Number of operations after primary hip replacement=3
Robert 2 Primary hip replacement 2004
January 2013 hip subsided as stem sank into medullary cavity. Surgeon revised right hip
Surgeon not satisfied so revised again 3 weeks later at which point an infection was introduced.
A further washout was unsuccessful. Length of stay in hospital—9 weeks
Hickman line inserted so patient could receive antibiotic shots at his local hospital every day for
2 weeks. Antibiotics unsuccessful
Referred to Treatment Centre 6
November 2013 first stage of two-stage revision. All but 4 inches of femur removed. Antibiotic
beads inserted and retained for 4 months
March 2014 second stage
Number of operations after primary hip replacement=5
Don 2 Primary hip replacement, April 2009—metal on metal
August 2011—revised and debrided due to wear
Had three dislocations between October 2011 and January 2012
February 2012 revision again to remedy dislocations (infection introduced)
March 2012 debrided—unsuccessful
January 2013—first stage of two-stage revision
July 2013 further debridement needed
April 2014—second stage
Interim period of 14 months without spacer
Number of operations after primary hip replacement=6
Maggie 2 Primary hip replacement 2005—metal on metal
July 2013 revised (infection introduced)
January 2014—first stage revision
Continued
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Table 2 Continued
Pseudonym and
revision type Treatment trajectory
April 2014—second stage revision
Fourteen weeks without hip or spacer
Number of operations after primary hip replacement=3
Charles 2 Primary hip replacement 2003
December 2012 developed unknown infection. Washout—unsuccessful
January 2013—first stage revision with spacer inserted
February 2013—complications pulmonary oedema, thoracoscopic drainage
October 2013—second stage of revision. Two weeks later hip then dislocated—further revision
for dislocation resulted in nerve damage
Ten months with spacer
Hospitalised for 2 months
Number of operations after primary hip replacement=4
Ray 2 Primary hip replacement February 2013—developed infection
First stage revision—reoperated after discovering they had fractured his femur when fitting spacer
Second stage
Number of operations after primary hip replacement=2
Amelia 2 Primary hip replacement 2008
Eight to nine months later revised for dislocation. Extremely painful for a few months as infection
had set in after screw broke and hip loosened. January 2013—first stage, no spacer
August 2013—second stage
Seven months without spacer
Number of operations after primary hip replacement=3
Jim 1 Primary hip replacement October 2008 (hip resurfacing)
2013—onset of symptoms of infection. Single stage revision a few days later followed by
9 months of antibiotic treatment
Number of operations after primary hip replacement=1
Roger 1 Primary hip replacement 2011
Developed sepsis only weeks later—near fatal
Three washout operations—unsuccessful
Stayed on antibiotics for 12 months under same surgeon then sent to Treatment Centre 1—
turned down the offer of a revision operation for a further 12 months remaining on antibiotics until
he could get cover to take care of his father
Two years on antibiotics
Single stage revision
Number of operations after primary hip replacement=4
Harry 1 Left and right primary hip replacements 1992
May 2013 left hip replaced after fall (infection introduced)
Single stage revision, unsuccessful
Still has infection
Antibiotics for 12 months at time of interview
Number of operations after primary hip replacement=2
Bill 1 Primary hip replacement 1994
2004 replaced primary (infection introduced)
Infection then remains for a further 10 years
Unclear how many operations but at least one further revision operation in that time
2013 single stage revision
Number of operations after primary hip replacement=approximately 4
Harriet 1 Primary hip replacement April 2011
February 2014—onset of symptoms of infection followed by single stage revision
Number of operations after primary hip replacement=1
Rory 1 Primary hip replacement 2001
2005–2006 developed infection, and hip replaced in single stage revision
2012 further revision after femur snapped
2013 onset of symptoms of infection
January 2014—single stage revision
Number of operations after primary hip replacement=3
Continued
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from his wound, but its visibility made social situations
awkward.
Low-grade infections presented as a more general sick-
ness and malaise which could, if not recognised early
on, lead to severe sepsis. Both Roger and Wendy
described how infection had started as flu-like symp-
toms, the importance of which was not initially realised
either by themselves or health professionals. Three
months after her primary operation Wendy lost con-
sciousness at home and had been rushed in to hospital.
She had no memory of the five initial days at hospital,
but had later been told by a nurse that she had nearly
died due to the infection. Other patients reported more
overt symptoms at onset such as agonising pain and a
loss in mobility, although they did not initially associate
these with PJI.
Invalidated concerns
Some patients expressed distress that their early con-
cerns that something was wrong were not acknowledged,
feeling that they had not been taken seriously. They felt
that earlier identification of infection would have les-
sened the duration for which they had endured painful
and debilitating symptoms.
The treatment period
Mobility and lifestyle limitations
Participants described loss of physical function and
mobility in relation to both the infection and the surgi-
cal treatment that they received. The number of treat-
ments which patients received had a proportionate
deleterious effect on the strength and stability of their
joint due to the removal of infected bone and tissues.
This was particularly the case for those who had multiple
previous revisions that could include both one-stage and
two-stage procedures. Both procedures affected patients’
physical mobility, posing restrictions on walking ability
and day-to-day activities.
However, patients who had undergone two-stage revi-
sions reported additional challenges to their mobility.
Once the infected prosthesis was removed, patients had
no functioning hip joint. Some patients were fitted with
a‘spacer’(box 1). Others did not receive a spacer. Four
of eight patients who had a spacer fitted experienced
complications such as fracture or dislocation of the
spacer which caused further pain, discomfort and immo-
bility. In some cases, this necessitated further surgery to
replace the spacer. During the fitting of their spacers
Lorna and Ray experienced fractured femurs that
required further surgery. Others who had no spacer
found their level of mobility further reduced. Although
some described how they had managed on crutches,
older, frailer patients were immobile for long periods,
which posed more burden on their carers. One patient
who cared for his father requested a one-stage revision
to avoid a more prolonged period of immobility, in spite
of his surgeon’s recommendation of two-stage revision.
Living between stages
The major difference in the accounts of those who
received a one-stage revision and those who received a
two-stage revision was the time between operations—the
interim period—during which patients had a spacer
device fitted or no spacer for a period of 10 weeks to
Table 2 Continued
Pseudonym and
revision type Treatment trajectory
Anthony 1 Primary hip replacement right hip 2004
Primary hip replacement left hip 2007
2010 right hip became infected. Revised two-stage revision. Without hip for 3 months. Spacer
broke after 2 weeks
December 2010—second stage revision of right hip. Had heart failure during hospital admission
and subsequent depression. Also diagnosed with leukaemia
2014 infection spread to the left hip. Revised with single stage revision
Number of operations after primary hip replacement=3
Simon 1 Primary hip replacement August 2013
September 2013—single stage revision
Number of operations after primary hip replacement=1
Francis 1 Primary hip replacement right hip December 2005
Primary hip replacement left hip February 2010
February 2011—diagnosed lump on right hip as bursar
Twelve operations (draining and packing) over a period of 18 months
October 2012—first stage operation of two-stage revision of the right hip with spacer beads
inserted for 3 months
January 2013—second stage operation
March 2014—infection spread to left hip
October 2014—single stage revision of left hip
Number of operations after primary hip replacement=15 in total (14 on right hip)
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14 months. During this period, patients experienced
considerable physical and psychological difficulties.
The interim period also increased the burden of care
on partner and family, and sometimes meant that the
patient stayed in hospital until their hip was replaced or
their home environment was adapted. For older and
more immobile participants and their families, this
period was particularly challenging, for instance, Amelia
was without a hip or spacer for 6 months, which her
family found particularly difficult to manage.
The sudden reduction in mobility during the interim
period also had profound psychological effects. A poign-
ant example is Maggie whose husband cared for her
during this time. She described physical suffering, loss
of dignity and independence and the realisation that
her life had changed suddenly and negatively. This led
her to consider suicide during the interim period.
Impact on family and relationships (during the treatment
period)
The infection and revision treatment also impacted on
family and personal relationships to varying degrees.
Costs in time and travel to see patients in hospital, and
the burden of caring for someone suddenly rendered
immobile for extended periods strained personal rela-
tionships. This was particularly the case for those who
underwent a two-stage revision when their immobility
was extended during the period between procedures.
Strain resulted from managing logistics (travel to and
from hospital) and the emotional challenge of receiving
support for personal hygiene tasks, leading to feelings of
indignity and sudden dependence. This was strongly felt
by those who had been particularly independent before
the infection.
Antibiotic burden
Participants reported mixed experiences of antibiotics
used for treating infection regardless of which type of
revision surgery they had received. While some reported
no adverse effects, others felt the antibiotics had caused
considerable and often distressing side effects such as
diarrhoea and sensory disturbances. Some attributed
ongoing problems to previous antibiotic use, with pro-
blems including stomach ulcers and increased need to
urinate, even after they had stopped taking the medica-
tion. However, two patients whose infection could not be
eradicated described antibiotics as life sustaining,
explaining that antibiotics prevented them from losing a
limb or dying of sepsis.
Protracted recovery after treatment
A changed life: physical limitations and a loss of valued
activities
Although patients adapted to varying degrees, infection
and treatment affected their ability to carry out
day-to-day activities, with short-term and long-term impli-
cations. Maintaining homes and leisure activities became
almost impossible. Those living alone often relinquished
valued activities and changed how they managed
periods of activity and rest because of reduced mobility.
Social impact: roles and relationships
Losses of physical ability also impacted on social relation-
ships. Compromised social roles and changes to social
identities caused frustration and other issues. For
instance, Robert partly attributed his depression to his
need to ask others to perform tasks that he felt were
simple to a man of his former abilities. Jim had to give
up his manually skilled profession after infection, which
Figure 1 Impact of prosthetic joint infection and revision treatment.
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Box 2 Illustrative quotes
Symptom onset
1.1 Insidious nature
You wouldn’t have thought you would have got an infection after five years […] Out of the blue, that’s what I can’t und erstand. ( Jim —one stage)
Nobody knew where the infection had come from…I hadn’t had any broken skin. I hadn’t had an accident of any form, I had no viral pro-
blems of any sort. (Rory—one stage)
I’d go out anywhere and everything would be soaking. And I went to [retail store] once and I feel ever so guilty, but I was standing by the
counter, and I felt this [laughs] thing go down my leg, and a part of the dressing had just flopped on the floor. (Lorna—two stage)
So they tried the big pump, but that was embarrassing because if my son took us to a café […] And I’ve sat there and I’ve had to put the
tube down me trouser leg because it was partly showing and you could see the blood and all that, all the nasty stuff coming out of the tube
into the little box. (Ray—two stage)
You start to feel like, it was a flu-like sickness, and I was trying to fight a virus or something, something that was going to pass, and I was
getting worse, and it got to the point where I wasn’t even rational and, in fact, two GPs dragged me off and shoved me in an ambulance
[…] In fact, [surgeon] told me since, he didn’t tell me at the time, “We thought we’d lost you.”(Roger—one stage)
[Nurse] said I don’t think you realise how ill you were […] she said “you almost died on us”. (Wendy—two stage)
Infection never crossed my mind because I didn’t realise that you could get this in the joint. All I knew was that I had pain […] I really was
rolling around, writhing around in agony. I was on very heavy doses of pain relief, cocodamol, oxycodone, I was on morphine. That went
on, on and off, for weeks. (Maggie—two stage)
The problem is that exactly one year later, my leg is swollen up and I can barely move. (Rory—one stage)
1.2 Invalidated concerns
I knew there was something seriously wrong. I was going to my GP probably once a fortnight saying, “I can’t stand this anymore. I don’t
seem to be getting any better”[…] I knew that the pain was not a muscle pain. I’d been through the procedure once before. It was a most
distressing time because nobody seemed to be actually hearing what I was saying.”(Maggie—two stage)
Treatment period
2.1 Mobility and lifestyle limitations
I wouldn’tsaythatit’s entirely attributable to the infection, but the operation obviously puts severe restrictions, on somebody like me who
doesn’twant to go on being lame and, it puts severe restrictions on going up mountains and I gave up tennis, I gave up this, I gave up that
[…] And golf. You know, so those restrictions were just as much connected with the operations and the weaknesses thereof as, as the
infection. (Anthony—one and two stage)
I’m in a different situation because I’ve had seven operations so it’s much weaker than most so for a guy who’s had his first operation, no
infection, just one hip replaced with another; his situation is totally different from mine. He’s still got the muscle strength there to keep the
hip in place. Mine’s all gone. It was eaten away by this pseudo tumour. (Don—two stage)
It’s taken a lot of mobility away so that actually takes away entertainment, interests […]It’s just the pure reduction in mobility that is the
nuisance. It’s taken away the bowls, it’s taken away the walking. (Roger—one stage)
Oh yeah, we were big walkers, so we were big walkers, then I used to go swimming three times a week, and then I, I, we do our own gar-
dening but obviously I can’tdoitnow[…] I can actually walk now with a stick, but only for short distances and only if I know where I’m
going. (Francis—one and two stage)
They put that in and they stitched me all put and everything, and then I had it X-rayed, then they realised that they’d fractured my femur. So
they had to open it up again, wire it up. (Ray—two stage)
Fourteen months without a hip joint so it meant that I couldn’t drive a car, I couldn’t do anything that I’d been used to doing, playing golf
or doing anything […] I couldn’t do the day-to-day things and walking around the house was difficult because I couldn’t carry anything
because I was on crutches all the time. (Don—two stage)
As I explained I was looking after my father when this all began—on my own, which made it very difficult during recovery to get that
covered and the rest of it […] [surgeon] was trying to drag me into the two-stage and I was fighting for the one-stage. And he looked up
the figures, he said success rate drops about 5%. I said, “Well, that’s not a bad gamble.”(Roger—one stage)
2.2 Living between stages
Yeah, well you’re suddenly reduced, it’s quite sudden, suddenly reduced to immobility because they descend on you and take out at the
second stage everything, and you’re weakened then you have massive antibiotics with drips and things going in intravenous and, er, it, it’s,
it’s, er, it makes you feel very very…down […] Oh, I was desperate you know in terms of…it, it was an awful stage to go through.
(Anthony—one and two stage)
Your life is destroyed, absolutely destroyed. There is nothing you can do. You lose your privacy. You lose your dignity. You lose your inde-
pendence. You have no life. For someone like me who lived a very physically—and I’m a very gregarious person, I would have happily—in
fact I would have happily ended it all. I stood at the top of the stairs many times and thought, “If I just went, could I guarantee that this
would get me out of this?”because it was that desperate, and I’m a very strong person. (Maggie—two stage)
2.3 Impact on family and relationships (during the treatment period)
The family were visiting me in [Treatment Centre 3], but there is an 80 odd mile round trip. (Bill—one stage)
Your wife becomes a carer, you know? Not least of all having to go 20 odd miles to the hospital every day. And she did, every day. (Rory—
one stage)
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We did try to go away, but I was so ill we had to come home because I was in such pain. I thought we weren’t going to see 51 years
because you get to the stage when you hate each other […] you can’t get into bed on your own. You can’t get out of bed on your own. I
had to use a commode for part of the time. I didn’t want that. I did not want my husband to see that, or have to do that for me and neither
did he. We both hated it, but we had to do it. (Maggie—two stage)
2.4 Antibiotic burden
Oh, they were terrible. It was a hard time to keep food down and things, you know. It’s awful. (Catherine two stage)
Then I started with really bad intense diarrhoea…and of course it’s horrible when you’re in a main ward; if they don’t get to you straight
away you’ve had it. (Francis—one and two stage)
[I] was on really heavy dosage of antibiotics for another eight days […] My bowels, urine and all of that had gone crazy […] My wife and I
are married 50 plus years, and I have to have my own room because I’m getting up in the night. (Rory—one stage)
They gave me two choices then […] we can either put you back in the wheelchair for life, or you can take massive gradually decreasing,
hopefully, doses of antibiotics, suitable antibiotics and you’ll have to keep on taking that, you won’t get any better. So I chose the antibio-
tics. Which, were remarkably good in that they stabilised me and I’ve had a reasonable existence ever since. (Anthony—one and two stage)
Recovery after treatment
3.1 A changed life—physical limitations and a loss of valued activities
Oh, I find as well that, if I want to go and do anything in the garden, I can only go out and do something for about five minutes, and then
my legs are gone […] So, yes, it has changed my life totally, but I’m, I’m not prepared for it to finish my life…I’ve adapted what I can
adapt, and I’ve still got a life. (Lorna—two stage)
You stop doing things. I was captain of a local snooker club in [ place]. I played golf at [ place]; all of that’s gone. Gave up my golf clubs to
the boys next door. Can’t play snooker because I’m afraid of pivoting on this leg. It’s not worth the risk. (Rory—one stage)
I need to keep moving or go and lie in bed. If I’ve done anything, I mean I try and keep as fit as I can, but I don’t go out walking to keep fit
because that’s just sheer torture. I do things like try and cut the grass, it might take me about three hours, but I’ve done something and it’s
getting you a bit fit. Usually by the time I’mdone I’m wiped out, and I usually go to bed. After doing a couple of hours of something I’ve
got to go to bed. ( Jim—one stage)
3.2 Social impact—social roles, social life and relationships
It’s taken a lot of mobility away so that actually takes away entertainment, interests. (Roger—one stage)
Well we used to go out almost every week […] with our friends, we don’t seem to do that much now, my husband tends to have to do a lot
for me now, I mean silly things like you know my feet, my toenails, because when I bend this is hurting me all and everything like that so…
(Wendy—two stage)
It’s like the tap upstairs. We needed, it was leaking, so we wanted a new tap fitting. I had to get the brother-in-law to put it, where I would have
been able to do it myself, but I just cannot bend down and get in to them positions to work now, to do something as simple as change a tap
[…] And, I mean, I was an engineer […], you know, so it’s, but I, I cannot do the simplest of things now. (Robert—two stage)
I spend quite a lot of time in bed now because that’s the only way I can cope with everything really. Sometimes it’s just better to go to
sleep and the day’s gone then […]I’ve got hardly any concentration powers any more. I do snap quite quickly, which I used to be very
placid. You’ve basically got a brain but it’s trapped in a useless body. ( Jim—one stage)
3.3 Disrupted geographies—moving home, into care
This is a good part of why I’m moving. Not only to get away from the big garden […] you begin to think of taking care of your family and
so on. We’re moving to an apartment that my wife will be happy in. Even if I’m not there. (Rory—one stage)
We said, you know, ‘what’s the chance of getting a stair lift?’And they said, ‘Off the council, very poor, but you can hire them.’So I hired it,
and that made the difference. That’s the difference between having this [the sitting room] as a bedroom and me getting upstairs to use the
facilities upstairs. (Robert—two stage)
3.4 Living with infection
It isn’t physically limiting; it’s just that the awful feeling that it’s there and it could well be terminal or degenerate into a terminal condition.
Because it’s more insidious, the infection, and I think that affected me a lot […]you feel definitely much degraded. (Anthony—one and two stage)
I kind of worked like hell at them [hip replacements] when I’m recuperating and do all the exercises […]SoI’m working at it all the time
[…] I can’t do that with the infection. You’re powerless; that’s the difference to me. (Anthony—one and two stage)
3.5 Living with Uncertainty and concerns about the future
Well for example in the back of my head I’m thinking September, October for me this year it’s gonna be another checkpoint. Because two
successive years these problems have arisen in that period; roughly six to eight months after the operation. If I got through this early
autumn, I can say this whole thing is a success. (Rory—one stage)
So, yeah, I do worry about it getting re-infected. And I still don’t feel completely I’m out of the woods yet, and yet it’s almost a year now,
you know. I’d like—you, sort of, think, ‘When can you relax? (Lorna—two stage)
But that’s the only thing I really panic about now, is getting another infection, because I don’t know where he’d go from there. It’d be leg off
time then, wouldn’t it? [laughs] (Lorna—two stage)
I should hate to get to the situation where I’ve got to have a leg off. I’d rather die. So the most important thing now is to try and keep two
legs. (Harry—one stage)
And then [Consultant H] is whispering to me, “Please don’t fall over; stay on a stick. If you fall we’ve got nothing left to repair.”(Rory—one
stage)
And I know both of my knees are on the way out…And I’m frightened that all this is gonna…make one of the knees go, which, obviously,
would mean another trip into hospital, and another bloody operation, which is the last thing I want. (Robert—two stage)
Continued
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created financial difficulties. He found it hard to retrain
for different work because of reduced concentration
and a new propensity for his mood to ‘snap’, which he
suggested was linked to frustration about sudden phys-
ical disability.
Disrupted geographies: moving home or into care
With losses in mobility and physical capacity, some parti-
cipants moved into care homes or smaller residences.
For instance, at the time of interview Rory was in the
process of moving from a house to an apartment. He
explained that he could no longer manage his garden
and he wanted a more manageable home for his wife as
she took on more caring responsibilities, and in the
event of his death.
Participants also changed how they configured their
homes. Many had turned a downstairs room into a
bedroom during their treatment period. However, the
ongoing effects of infection and treatment on their
mobility meant that some could no longer manage their
stairs safely and they continued to sleep downstairs in
the longer term.
Living with infection
Two participants had infection that could not be eradi-
cated and took antibiotics every day. The ongoing pres-
ence of infection had psychological consequences and
they lived in fear of their infection becoming unmanage-
able. One participant described his experience of recov-
ery from surgery in terms of powerlessness, contrasting
this with his experience of the original operation when
he had been able to improve with physiotherapy
exercises.
Living with uncertainty and concerns about the future
At the time of the interview, patients were in a period of
recovery, some up to 12 months after treatment
(table 2). Participants who had undergone one-stage
and those who had undergone two-stage revision lived
with uncertainty about the recurrence of infection.
That’s my biggest fear because it’s a painful experience I can tell you because I did it three times and it’s the most excruciating painful
experience you can have […]I’m still living in fear of doing things right, after the operation you know? (Don—two stage)
With this pain, he said it is going to go away. If it goes away, that’s fine. I wouldn’t want to see myself perpetually having to take painkillers
all the time, all the time. (Charles—two stage)
Well just to keep going and not to end up in a wheelchair, because then I am so dependent on somebody coming along to push me here,
there and everywhere. So if I can keep mobile and keep well away from the wheelchair, that is my greatest concern. (Amelia—two stage)
Well I just hope that I can start to walk properly and you know get back to a normal social life and things like that…And able to do things in
the house you know like simple things like I used to change a light bulb. (Wendy—two stage)
I’m [age], training with people…Well I expect 10 year olds could run rings around me on a computer, and that’s the sort of skill I’ve got
and I’ve got to compete against people like that to try and get a job. And it’s just battering you, one thing after another. That’s the pressure,
no money and can’t get a job. If I knew I could get back to building then I’d be happy, but I’ve got to be realistic. ( Jim—one stage)
The need for support
A bit more preparation for, what could go wrong. I mean, they did warn me, as I said, that, it is only a weak stuff [the spacer] but you don’t
take that in fully. I think a little more counselling initially, a little more, preparation. (Anthony—one and two stage)
Yeah, well you’re suddenly reduced, it’s quite sudden, suddenly reduced to immobility because they descend on you and take out at the
second stage everything, and you’re weakened then you have massive antibiotics with drips and things going in intravenous and it makes
you feel very very…down […] Oh, I was desperate you know in terms of…it, it was an awful stage to go through […] I think that’s the one
period that…some form of treatment or advice or counselling or something needs to be really improved. I don’t know what other people
have gone through with this, whether they have the cracking and the crumbling that I had, because that was the awful part and I think, you
know, I was reduced to almost complete immobility. (Anthony—one and two stage)
I mean this is the one thing that I highlighted to [surgeon] […] what you need is to be able to pick up the phone and say to someone, “I
don’t know how I’m going to get through the rest of the day.”You know, “Idon’t see any end to this. I don’t know how it’s ever going to
get better,”because you can’t. Everyday, 24 hours is a long, long time, you know, you lie awake in the night. It’s a long and lonely existence.
And I think if you could just—you cannot offload onto your family, because…[becoming tearful] they’re caring for you. It’s very distressing
for all of them. Your family, you can’t just go to them and say, “I want to end this. Get me out of it. I can’t stand it anymore”[…] what I
would have liked most, is some person that didn’t know me, that I could just ring up and offload and say, “I’m really fed up to the back
teeth with this.”(Maggie—two stage)
I had decided that from the first morning that I didn’t need her but I didn’t stop her. I let her come the four days just to have somebody to
talk to. (Catherine—two stage)
I don’t know how anyone would cope, that didn’t have someone to care for them, didn’t have a partner or a member of their family who
could look after them. I don’t know how they would manage, either physically or emotionally. (Maggie—two stage)
I’m not really happy with the physio, actually. Erm, because it’s, like, you go and it’s, like, you’ve got six sessions, and they’re going, ‘Oh,
well, that’s coming on good. That’s, but you’re finished now.’(Robert—two stage)
When I had my bypass I came out after the operation, and I had problems [becoming tearful]. I had, er, like, medical depression. Erm, and
I went to see a, a psychologist. It was arranged. I had to wait […] but I went to see a psychologist, and she asked a lot of questions. Erm,
and I had to, sort of, answer the questions and try what she said. Erm, I think if I’d had somebody to talk to and answer some of the things
I was a little bit doubtful about myself, it would have helped. (Robert—two stage)
Box 2 Continued
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There was little difference between the concerns of par-
ticipants in both groups. Some participants found it dif-
ficult to foresee a time when they could relax.
Those who had large sections of bone removed during
previous revision surgery expressed concern that recur-
rence of infection could lead to amputation. Others
described a reluctance to have other painful joints
replaced for fear of further infection. Participants also
found it hard to focus on the future if they had nerve
damage or ongoing pain. Those who had experienced
dislocations also lived with a fear that it may happen
again, which impacted on how much they could plan to
do in the future. Also, concerns about the future and
regaining or maintaining some independence were par-
ticularly related to issues of mobility, self-care and finan-
cial well-being.
The need for support
Participants suggested that there were a number of areas
in which they needed support during each of the
phases.
All participants expressed an absence of and need for
psychological support, but this was particularly pro-
nounced among those who had received a two-stage revi-
sion. Participants described a need for better
preparedness for the interim period, particularly with
focus on the possible impact on family and partners.
Those living alone were particularly vulnerable to loneli-
ness and isolation. Some took steps to reduce this, but
used their own ingenuity to do so rather than receiving
planned psychological support. For instance Catherine
let a carer visit her for the first 4 days after discharge
from hospital, just to have ‘someone to talk to’.
Participants would also have liked to have had more
knowledge about the physical challenges of infection
and revision. This was particularly evident among partici-
pants who had received both revisions. For instance,
during the interim period, Anthony’s spacer had
broken, leaving him ‘suddenly reduced to immobility’,
feeling ‘weakened’and ‘desperate’. He explained how
he had not appreciated the fragility of the spacer and
that pretreatment counselling would have better pre-
pared him for the physical and psychological aspects.
The physical and psychological impact of infection is
entangled with each other: physical implications of
infection and treatment are linked to distress, concern
and uncertainty. For patients recovering from infection,
the need for support in all of these areas also persists
beyond the treatment period, with participants suggest-
ing a need for more physical support in order to reduce
psychological problems such as depression.
DISCUSSION
The insidious onset of symptoms and difficulty in diag-
nosing deep PJI meant that patients experienced uncer-
tainty, anxiety and fear. Symptoms could be overt,
painful and visible, or less obvious and therefore
overlooked by patients or clinicians. Some patients felt
that their early concerns about symptoms were not
heeded by clinicians. During recovery after treatment,
ongoing anxiety was caused by uncertainty about future
return of infection that might result in further major
surgery and possibly amputation. Others lived in fear of
dislocating their less stable hip joint. Patients’revision
histories were often complex, extending over many years
and many had already received multiple revisions (some-
times both one-stage and two-stage) prior to their par-
ticipation in the study, which is testament to the
difficulty in eradicating infection. Patients experienced
pain associated with treatment and complications, and
this could persist long after treatment. Sudden and pro-
longed immobility affected patients both physically and
psychologically.
The major difference between the two revision types
was that two-stage revisions imposed more treatment
burden on patients and families, often due to complica-
tions associated with the interim period. The sudden
and immense negative change in patients’lives, the loss
in mobility, sense of disablement and ‘degradation’had
a deep psychological impact with some patients report-
ing depression and suicidal thoughts. Treatment
impacted on family and personal relationships to varying
degrees. Some participants coped despite the new
burden of care, while others reported a strain on per-
sonal relationships when their partner suddenly also
became their carer. The impact was so great for some
patients that they gave up manually skilled employment,
which presented financial concerns. Others moved into
more manageable homes or residential care homes.
Strengths and weaknesses of the study
Although we acknowledge that inclusion of future study
sites might have produced additional findings, the
sample size of 19 patients, derived from five NHS ortho-
paedic departments across the UK, and the achievement
of saturation provides confidence that the findings are
transferable to similar contexts.
15
In addition, these
allowed us to address fully the research aims. In the ana-
lysis process, double coding ensured that the analysis was
rigorous and based on a robust coding framework.
Finally, although use of a cross-sectional study design
meant that participants were asked to recall their previ-
ous experiences and this might have introduced some
recall bias, the inclusion of patients at a range of time
points between discharge and the interview (2 weeks to
12 months) meant that the study was able to elicit
experiences and support needs relating to onset, treat-
ment and the longer term.
Comparison with other studies
To our knowledge, this is the first study to explore the
impact of one-stage and two-stage revision treatment for
deep PJI after hip replacement. Andersson et al
7
explored more general patient experiences of SSIs
(abdominal surgery, hip and knee replacements,
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coronary bypass or hysterectomy). Our study resonates
with their findings that infection impacts on physical,
social and emotional aspects of everyday life. Andersson
also reports that patients with SSI experience feelings of
insecurity, pain, and felt their concerns were not taken
seriously during the onset of symptoms. Patients’con-
cerns about reinfection were well founded as it is known
that around 10% of surgical revisions for infected hip
prosthesis become reinfected within 2 years.
16
Other
studies have shown that general SSIs and PJI lead to con-
siderable reductions in health-related quality of life, and
negatively affect both physical and psychological out-
comes while increasing healthcare costs by as much as
3.6 times greater than that of a primary total hip
replacement.
817–19
The use of and complications asso-
ciated with spacers were a particular challenge for
patients within this study. Complications with spacers
appear to be relatively common, despite their beneficial
use in maintaining tissue length and function, and on
study of 88 spacer implants showed an overall complica-
tion rate of 58.5% including 15 dislocations and 9
spacer fractures.
20
Previous research comparing one-
stage and two-stage revision treatment has mainly
focused on clinical outcomes and reinfection rates and
this is the first study to compare patient experiences of
these treatments in terms of impact.
16 21
While reinfec-
tion rates are considered to be similar for both revision
treatments, we show that the impact on patients can vary
greatly.
Implications for clinicians and policymakers
On the basis of our findings, we suggest that healthcare
professionals (surgeons, general practitioners and
nurses) focus on optimising education and supportive
care strategies to enable earlier recognition of signs and
symptoms of infection. An increased vigilance for recent
arthroplasty patients and more consideration of their
concerns should be encouraged. Patients expressed a
requirement for more supportive interventions both
during revision treatment (eg, counselling and peer
support), and in the longer term (eg, physical rehabilita-
tion and reassurance/active monitoring) as the impact
of PJI can persist long after surgical treatment. We rec-
ommend future research focuses on designing and
evaluating improved care strategies for people with PJI.
We are also conducting further research to explore
decision-making and preferences for type of revision
treatment.
22
Acknowledgements The authors thank Amanda Burston and the INFORM
Patient and Public Involvement group, the study administration and
management team Simon Strange, Beverley Evanson and Louise Hawkins for
their expertise and support, and all the patients for their time and effort in
participating in the study.
Contributors All authors were involved in the conception and design of the
study. AJM conducted the interviews. AJM and RG-H contributed to the
analysis and interpretation of data. AJM and RG-H drafted the article and all
authors revised it critically for important intellectual content. All authors gave
final approval of the version to be published.
Funding This paper presents independent research funded by the National
Institute for Health Research Programme Grants for Applied Research (NIHR
PGfAR) programme (grant number: RP-PG-1210-12005) and supported by
the NIHR Comprehensive Clinical Research Network (CRN).
Disclaimer The views expressed are those of the authors and not necessarily
those of the NHS, the NIHR or the Department of Health.
Competing interests None declared.
Ethics approval Ethics approval was granted by NRES Committee South West
—Exeter (14/SW/0072) on 29 April 2014.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
Open Access This is an Open Access article distributed in accordance with
the terms of the Creative Commons Attribution (CC BY 4.0) license, which
permits others to distribute, remix, adapt and build upon this work, for
commercial use, provided the original work is properly cited. See: http://
creativecommons.org/licenses/by/4.0/
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experiences of revision surgery
study of the impact on patients and their
Deep prosthetic joint infection: a qualitative
Gooberman-Hill
Andrew J Moore, Ashley W Blom, Michael R Whitehouse and Rachael
doi: 10.1136/bmjopen-2015-009495
2015 5: BMJ Open
http://bmjopen.bmj.com/content/5/12/e009495
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