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Is it me? The impact of patient-physician interactions on lupus patients' psychological well-being, cognition and health-care-seeking behaviour CLINICAL SCIENCE Rheumatology Advances in Practice

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Objective. The aim was to explore the impact of patient-physician interactions, pre-and post-diagnosis, on lupus and UCTD patients' psychological well-being, cognition and health-care-seeking behaviour. Methods. Participants were purposively sampled from the 233 responses to a survey on patient experiences of medical support. Twenty-one semi-structured interviews were conducted and themes generated using thematic analysis. Results. The study identified six principal themes: (i) the impact of the diagnostic journey; (ii) the influence of key physician(s) on patient trust and security, with most participants reporting at least one positive medical relationship; (iii) disparities in patient-physician priorities, with patients desiring more support with quality-of-life concerns; (iv) persisting insecurity and distrust, which was prevalent and largely influenced by previous and anticipated disproportionate (often perceived as dismissive) physician responses to symptoms and experiences of widespread inadequate physician knowledge of systemic autoimmune diseases; (v) changes to health-care-seeking behaviours, such as curtailing help-seeking or under-reporting symptoms; and (vi) empowerment, including shared medical decision-making and knowledge acquisition, which can mitigate insecurity and improve care. Conclusion. Negative medical interactions pre-and post-diagnosis can cause a loss of self-confidence and a loss of confidence and trust in the medical profession. This insecurity can persist even in subsequent positive medical relationships and should be addressed. Key physicians implementing empowering and security-inducing strategies, including being available in times of health cri-ses and validating patient-reported symptoms, might lead to more trusting medical relationships and positive health-care-seeking behaviour.
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Original article
Is it me? The impact of patient–physician
interactions on lupus patients’ psychological
well-being, cognition and health-care-seeking
behaviour
Melanie Sloan
1
, Felix Naughton
2
, Rupert Harwood
3
, Elliott Lever
4
,
David D’Cruz
5
, Stephen Sutton
1
, Chanpreet Walia
6
, Paul Howard
6
and
Caroline Gordon
7
Abstract
Objective. The aim was to explore the impact of patient–physician interactions, pre- and post-
diagnosis, on lupus and UCTD patients’ psychological well-being, cognition and health-care-seeking
behaviour.
Methods. Participants were purposively sampled from the 233 responses to a survey on patient
experiences of medical support. Twenty-one semi-structured interviews were conducted and themes
generated using thematic analysis.
Results. The study identified six principal themes: (i) the impact of the diagnostic journey; (ii) the in-
fluence of key physician(s) on patient trust and security, with most participants reporting at least one
positive medical relationship; (iii) disparities in patient–physician priorities, with patients desiring more
support with quality-of-life concerns; (iv) persisting insecurity and distrust, which was prevalent
and largely influenced by previous and anticipated disproportionate (often perceived as dismissive)
physician responses to symptoms and experiences of widespread inadequate physician knowledge
of systemic autoimmune diseases; (v) changes to health-care-seeking behaviours, such as curtailing
help-seeking or under-reporting symptoms; and (vi) empowerment, including shared medical decision-
making and knowledge acquisition, which can mitigate insecurity and improve care.
Conclusion. Negative medical interactions pre- and post-diagnosis can cause a loss of self-
confidence and a loss of confidence and trust in the medical profession. This insecurity can persist
even in subsequent positive medical relationships and should be addressed. Key physicians imple-
menting empowering and security-inducing strategies, including being available in times of health cri-
ses and validating patient-reported symptoms, might lead to more trusting medical relationships and
positive health-care-seeking behaviour.
Key words: systemic lupus erythematosus, psychology, behaviour, quality of life, well-being,
patient–physician interactions
1
Behavioural Science Group, Institute of Public Health, University of
Cambridge, Cambridge,
2
Behavioural and Implementation Science
Group, School of Health Sciences, University of East Anglia,
Norwich,
3
Patient and Public Involvement in Lupus Research Group,
Institute of Public Health, University of Cambridge, Cambridge,
4
Department of Rheumatology, University College London, London,
5
The Louise Coote Lupus Unit, Guys’ Hospital, London,
6
LUPUS
UK, St James’ House, Romford and
7
Rheumatology Research
Group, Institute of Inflammation and Ageing, College of Medical and
Dental Science, University of Birmingham, Birmingham, UK
Submitted 6 May 2020; accepted 14 July 2020
Correspondence to: Melanie Sloan, Behavioural Science Group,
Institute of Public Health, University of Cambridge, Forvie Site,
Robinson Way, Cambridge CB2 0SR, UK.
E-mail: mas229@medschl.cam.ac.uk
CLINICAL
SCIENCE
V
CThe Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use,
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Rheumatology Advances in Practice
Rheumatology Advances in Practice 2020;0:1–13
doi:10.1093/rap/rkaa037
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Introduction
The generally protracted nature of the lupus diagnostic
journey is well documented [14] and can contribute to
the adverse physical [5] and psychological impacts [4,
68] of the disease. Multiple misdiagnoses can be expe-
rienced during this time, and early symptoms are often
misattributed to psychological, mental health or medi-
cally unexplained symptom causes [1,2,4]. In our re-
cent survey, >80% of participants who reported
receiving a mental health/medically unexplained symp-
tom misdiagnosis stated that it had reduced their trust
in doctors and changed their health-care-seeking be-
haviour [4]. Price and Walker [9] documented that lupus
patients’ illness experiences are frequently delegitimized
and that the diagnostic journey can be a distressing,
‘damaging, iatrogenic experience’.
Expert commentary has also identified that, with
improved life expectancy for SLE patients, a greater fo-
cus is required on quality of life and holistic care [10,
11]. In addition, a recent study found that the majority of
respondents with SLE and other rheumatic diseases
struggled to cope with their condition, yet only 16% had
been offered psychological support from the UK
National Health Service [2]; and Hale et al. [12] reported
that lupus patients often feel misunderstood and iso-
lated. There is limited research on UCTD patient experi-
ences, but there are indications that patient satisfaction
with medical care could be lower than with lupus [4].
Georgopoulou et al.[13] carried out a recent systematic
review and concluded that more research was required to
increase understanding of the patient–physician relation-
ship in rheumatology. The physician–patient relationship is
vital, because it has an impact on patient outcomes and
satisfaction with treatment and care [13] and on various
behaviours, although only medication adherence has
been studied in any depth [13,14].
A more in-depth understanding of patients’ beliefs and
behaviours based on their past experiences is important
because they can be modified by clinicians using a
patient-centred approach [15]. Greater understanding of
patient experiences may also assist clinicians adapt their
own behaviour to improve the medical relationship. Our
study therefore aims to gain greater understanding of how
past medical interactions influence SLE/UCTD patient
cognition, well-being and health-care-seeking behaviour.
Methods
A questionnaire on diagnostic journeys, symptoms and
perceptions of medical support was made available online
on the LUPUS UK forum and lupus UK sufferers’
Facebook page and completed by 233 participants [4].
Purposive sampling from those giving permission to be
interviewed (>75% of respondents) was conducted, using
the questionnaire responses to ensure a range of personal
and disease characteristics, diagnostic experiences and
perceptions of medical support. The interview schedule
(Supplementary Data S1, available at Rheumatology
Advances in Practice online) was semi-structured, with
questions covering: the diagnostic journey, positive and
negative relationships with physicians, emotional impact
and health-care-seeking behaviour. Interviews were carried
out by M.S., an experienced, qualitatively trained re-
searcher. They continued until saturation (the number of
interviews beyond which no novel insights were generated)
was reached. Interviews lasted for 1 h and were tran-
scribed verbatim. Thematic analysis [16]wasused,with
data coded by M.S., using NVivo11, after immersion in the
transcripts. One-quarter of interviews were double coded
by R.H. to ensure agreement and reliability. Common
themes, preliminary assumptions and more abstract con-
cepts emerging from the data were then discussed and
agreed by the wider team. Validity of the findings was
strengthened by considering cases that deviated from the
more common responses [17], member checking by par-
ticipants [18,19] and comparing findings with responses
on the questionnaires and analysis of the LUPUS UK fo-
rum. Detailed methods and the consolidated criteria for
reporting qualitative research (COREQ) checklist for quali-
tative research [20] are included in Supplementary Data
S2, available at Rheumatology Advances in Practice
online.
This study complies with the Declaration of Helsinki.
The Cambridge Psychology Research Ethics Committee
approved the research (no. PRE 2018-84), and informed
consent was obtained from all respondents.
Results
Participants
Table 1 shows participant characteristics. The majority
of participants were female, white and highly educated.
Key messages
.Difficult diagnostic journeys and negative medical interactions can cause persistent insecurity, health-care avoidance
and symptom under-reporting in lupus patients.
.Empowerment, and physicians demonstrating availability, belief in symptom reporting and holistic care can mitigate
patient insecurity.
.Psychosocial and quality-of-life difficulties are common and often undisclosed, requiring greater awareness and
support.
Melanie Sloan et al.
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They included a range of disease severity and medical
experiences.
Out of 32 survey respondents invited to participate,
21 were interviewed (66%) and the following six
themes identified: (i) the impact of the diagnostic
journey; (ii) the influence of key physicians on
patient trust and security; (iii) disparities in patient–
physician priorities; (iv) persisting insecurity;
(v) changes to health-care-seeking behaviours; and
(vi) empowerment.
Theme 1: the impact of the diagnostic journey
Interactions with physicians during the diagnostic jour-
ney were identified as vital in laying foundations for fu-
ture medical relationships. Given that lengthy and
difficult journeys to diagnosis were common, these foun-
dations were often insecure. Repeated experiences of
physicians’ lacking knowledge of lupus/UCTD and medi-
cal disbelief in an organic cause for symptoms were fre-
quent and reported as particularly damaging to future
security and trust in physicians:
Nobody seemed to take me seriously.... Doctors made me feel as
if I was imagining things ... made me feel very anxious, nervous
and somewhat depressed, being disbelieved, as if I wasn’t impor-
tant and didn’t matter.... Still get very anxious and upset when at-
tending appointments. (Participant 21, female, 20s)
Diagnosis was often reported to be a relief, although
some participants discussed also feeling shock and fear
for their future. Descriptions of diagnostic appointments
varied widely, in terms of empathy and the information
and support offered. This was discussed as heavily
influencing the future relationship with both the diagnos-
ing physician and the disease.
Theme 2: the influence of key physicians on patient
trust and security
The majority of participants reported currently having
high levels of trust in key physician(s), predominantly
their rheumatologist or general practitioner (GP):
I just felt he [rheumatologist] had my back, no matter what, he had
my back. (Participant 3, female, 50s)
Factors contributing to trust and security included the
following.
Availability
With a relapsing–remitting disease, rapid access to a
trusted clinician was felt to be highly security inducing,
even if rarely required.
Belief in patient accounts
Although some participants felt that their symptoms
were believed, others discussed feeling relieved when
test results were positive or when a visible symptom
appeared. This provided objective ‘proof’ and validation
of the often-invisible symptoms that many reported had
been previously ‘dismissed’ and left untreated. This in-
terviewee raised the difficulties experienced by patients
and physicians:
You tend to get dismissed a lot, you know ... they say they want
evidence ...he [rheumatologist] said very clearly ‘I don’t want to be
found a couple of years down that I’ve misdiagnosed you or mis-
treated you or even ill-spent money off the Welsh budget’.
(Participant 8, male, 60s)
Continuity and connection
Continuity and forming a trusting relationship with clini-
cian(s), where the patient felt known personally and indi-
vidual manifestations of the disease were understood,
TABLE 1Participant characteristics
Characteristic Number Percentage
(rounded)
Age band, years
18–29 3 14
30–39 1 5
40–49 7 33
50–59 5 24
60–69 5 24
Country of residence
England 11 52
Scotland 3 14
Wales 4 19
USA 1 5
Australia 2 10
Ethnic group
White 19 90
Mixed race 1 5
Asian 1 5
Gender
Female 17 81
Male 4 19
Education
GCSE/O level/equivalent 2 10
A level/equivalent 2 10
Degree 7 33
Postgraduate 10 48
Time delay to diagnosis, years
<1314
1–3 2 10
4–9 9 43
10þ733
Time since diagnosis, years
<1210
1–5 5 24
6–10 6 29
>10 8 38
Diagnosis on clinic letters
SLE 17 81
Undifferentiated or
unspecified CTD
419
Age at symptom onset/diagnosis, years
Symptom onset <18,
diagnosis <18
210
Symptom onset <18,
diagnosis >18
524
Symptom onset and
diagnosis >18
14 67
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often facilitated a great feeling of ‘safety’ with that
physician.
My consultant has known me for years and just by looking at my
face he can tell if something is wrong ... always supportive and
shows that he cares. (Participant 13, female, 40s)
Theme 3: disparities in patient–physician priorities
There was a widely perceived disparity between physi-
cian and patient priorities, with physicians often reported
to be focused on medication, joints and organ damage,
whereas patients invariably also wanted, but reported
rarely receiving, more holistic care and support with
quality of life:
They’re not really bothered about how my life’s changed or things I
can’t do now ... They just want to be, like, ‘Take this med ... have
your bloods’, and you’re done, and that’s it, don’t talk about any-
thing. (Participant 7, female, teenager)
It was discussed that specialist nurses might have
more time to listen and focus on quality of life, but only
a minority of participants reported having access to one.
This participant articulated the potential inequality of
access:
I said, ‘I was diagnosed 3 years ago, why wasn’t I referred to
you?’.... She [rheumatology nurse] said, ‘Well, to be honest, rheu-
matoid arthritis patients are referred to me straight away, but we
don’t do it with lupus’. (Participant 1, female, 40s)
Table 2 details examples of key physician behaviours
influencing trust and security, identified as the ABC of
availability, belief and continuity of holistic care.
Theme 4: persisting insecurity
Self-doubt was frequently expressed, probably initiated
in the diagnostic uncertainty stage, when almost all par-
ticipants stated that multiple symptoms with no initial
explanation and the overwhelming fatigue made them
feel ‘crazy’ and/or ‘lazy’. For many, this resulted in a
continued loss of confidence in the medical profession
and in their own ability to interpret their symptoms accu-
rately, exacerbated by the unpredictability of when and
how severely the disease would next flare. The psycho-
logical damage from previous and anticipated negative
reactions from physicians was sometimes felt to be
more damaging than the disease:
Managing a chronic disease is difficult; it involves acceptance and
looking forward, appreciating small things rather than regretting
what is lost.... The way the medical profession reacts to us is out-
side of our control [and] can be more damaging, psychologically
and emotionally, than the chronic disease itself ... they are churn-
ing out a chronically ill collective of irreparably changed and dam-
aged people. Singed souls who deserve better, much better.
(Participant 16, female, 60s)
Despite many individual positive medical relationships,
persisting insecurity usually remained in relationship to
the wider medical profession. This was found to be
most severe where one or more of the following had
occurred.
Being repeatedly disbelieved, especially in childhood
The majority of all interviewees described being ‘dis-
missed’ or ‘disbelieved’; a minority feeling ‘gaslighted’,
both pre- and post-diagnosis. This was particularly com-
mon in those patients with UCTD or with an atypical
symptom, demographic and/or serological presentation,
often leading to self-doubt:
When the bloods come back as well, there’s nothing wrong ... you
doubt yourself, you doubt your own body ... maybe I am losing it a
bit, maybe I am just imagining it. (Participant 8, male, 40s)
Misattributing disease symptoms in children to grow-
ing pains, attention-seeking or hypochondria was com-
mon, and the damage was exacerbated when families
accepted the physician’s opinion. This was seen to re-
sult in a failure to continue seeking the correct diagno-
sis, damaged family relationships and a belief, often
formed at a crucial period of development, that it was a
character fault:
You get written off, and it affects your perception of your whole per-
sonality. (Participant 11, female, 40s)
Disproportionate clinician responses
Confidence in their own and physicians’ ability to inter-
pret symptoms correctly was discussed as also having
been undermined by disproportionate responses, both
pre- and post-diagnosis. Almost all patients had re-
ceived dismissive responses or false reassurance, sub-
sequently reported to be incorrect. Physician over-
reactions were also discussed, especially in those
patients with organ/life-threatening manifestations.
Some GPs were reported to lack confidence in taking
responsibility even for minor symptoms. Experience of
disproportionate reactions is summarized by this
participant:
I must have presented to five GPs and none would take me on with
SLE and APS, too complex. Having said that, frequently I feel that
problematic symptoms I present to the rheumatologist are often
dismissed with a pat and a smile. (Participant 12, Female, 60s)
Inaccurate physician opinions on medical records or
letters
These opinions, often reported as given with poor un-
derstanding of lupus/UCTD, and sometimes questioning
personal and patient integrity, were felt to have caused
discrimination and difficulty in accessing appropriate
care in the future for several participants. It was also
noted that physicians’ use of words such as ‘complex’
or ‘complicated’ when used about the patient rather
than the disease could feel judgemental, reduce self-
worth and increase physician and self-blame.
Administrative failings
The frequency and reliability of appointments varied
considerably between participants, seemingly more
influenced by individual hospital/GP surgery organization
than disease severity. Some participants felt they had
‘fallen through the cracks’.
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Inadequate knowledge/care during health crises
Multiple interviewees felt ‘unsafe’ in the accident and
emergency (A&E) department or as in-patients, on ac-
count of past experiences of inadequate clinician knowl-
edge of systemic autoimmunity. Several interviewees
who reported being discharged after life-threatening
conditions, such as meningitis or a heart attack, were
initially misdiagnosed and treated dismissively with ‘di-
agnoses’ such as anxiety or indigestion. Remaining vigi-
lant was felt to place a large burden on patients, who
were often very unwell:
I never feel safe or secure with any of them.... Even in an emer-
gency, I have to be well enough prepared to offer up anything I can
to help even the most basic types of medics help me. (Participant
20, female, 60s)
Several participants discussed medical post-traumatic
stress disorder (PTSD), usually from cumulative negative
medical experiences, especially misdiagnoses, dismissal
of symptoms and feeling endangered from lack of physi-
cian knowledge. One likened the psychological state
created to that of a ‘rescue pet’, constantly anticipating
neglect and mistreatment. Table 3 details further experi-
ences of insecurity, demonstrating losses of both per-
sonal and medical confidence.
Theme 5: changes to health-care-seeking
behaviours
Persisting insecurity and distrust were found potentially
to be linked to multiple negative health-care behaviours,
especially under-reporting and health-care avoidance.
This included those with multiple organ involvement
avoiding health care for potentially life-threatening
symptoms:
Psychologically, it would be much better for me to never see an-
other doctor.... It makes me wonder how many of us have just
walked away and died. (Participant 5, female, 50s)
TABLE 2Examples of quotes describing key physician behaviours that influence patient trust, well-being and security
Examples of positive experiences Examples of negative experiences
The diagnostic
appointment
Everyone was so compassionate....I was sent
away with a lot of information ... she [rheumatol-
ogist] made it as bearable as it’s ever going to
be....How it is handled at that moment, on that
day, is so important ...I knew then I was in safe
hands. (Participant 2, female, 50s)
She [rheumatologist] said you’ve got lupus and ar-
thritis and that was it. So I went away and googled.
I found out all about the bad stories....I was like,
this is it, I’m going to die....I’ve never had it
explained, even though it’s been 4 years. I couldn’t
tell [school] anything because I didn’t know what
lupus is.... I just think they [rheumatologists] don’t
care much. (Participant 7, female, teens)
Availability in
times of crises
He [rheumatologist] said, ‘If you need me, you just
email’....It’s priceless ... because you never
know when a flare is going to strike. You could
be doing cartwheels today. Tomorrow, you can’t
even move ...so to have that lifeline: ‘Doc, I’m in
trouble’. ‘Right, get yourself to clinic’, you know,
and it’s straight away. (Participant 3, female, 50s)
[Secretary] said, ‘I refuse to take your phone calls
anymore. If you’ve got anything to say, you will
phone the rheumatology hotline’....[Hotline
nurse] said, ‘We can’t keep replying to your
phone calls. You’re not the only patient we speak
to in a week, and I’d urge you not to phone
again’....And I was, like, ‘Why are you being so
obstructive? I’m really sick’, and 10 days later I
was admitted. (Participant 17, female, 30s)
Belief and valida-
tion in patients’
symptom
reporting
[Rheumatologist] sat there and listened ...there
was no questioning my experience, it was
accepting my experience. (Participant 8, male,
40s)
He [rheumatologist] was so caring and gentle, and
he would look at you as if you were the only per-
son who existed for your entire appointment and
what you were saying was totally valid ... I felt
safe with [him].(Participant 3, female, 50s)
[Rheumatologist] said, ‘You walked in here unaided.
Your hands aren’t deformed. Appointments are al-
located according to need’. Every symptom I have
that isn’t specifically to do with my joints he dis-
misses as being nothing to do with my autoim-
mune condition. Why won’t he listen to what I am
saying and why is he ignoring my neurological
symptoms? ... It’s because they don’t look at the
patient sitting in front of them ...they’re looking at
their computer screen ...he rarely looks at me.
(Participant 16, female, 60s)
Care:holistic
care, continu-
ity, communi-
cation and
consideration
for quality of
life
My rheumatologist has each patient fill out a ques-
tionnaire on symptoms....She wants to know
how you really are doing ... discusses this and
other concerns....She has the perfect combina-
tion of analysing clinical test results, factoring in
symptoms and asking pertinent questions....
She asks at every appointment about the fatigue,
brain fog and quality of life ... gives practical ad-
vice. (Participant 14, female, 60s)
Quality of life is the problem that I want to address,
get sorted. I’m not really interested in some of
the things he’s [rheumatologist] really interested
in ...it’s the fatigue that’s ruining my life.... He’s
not interested in the emotional or the practical
side of living with the disease, he’s purely inter-
ested in the disease. (Participant 4, male, 50s)
The focus is always on what he [rheumatologist]
wants to discuss; so frustrating! Fatigue and pain
are unquantifiable. (Participant 12, female, 60s)
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Lack of active listening (especially looking at com-
puter screens rather than patients) and failure to create
a ‘safe space’ were also reported to have led to
non-disclosure of symptoms. Although this sometimes
related to only one occasion and individual physician
communication skills, a tendency to under-report symp-
toms was identified. This was also felt to be heavily
influenced by time constraints of both primary care and
rheumatology clinics, leading to patients having to priori-
tize which of their (usually multiple) symptoms to report.
Under-reporting of mental health and cognitive con-
cerns was particularly common, with the reasons includ-
ing embarrassment, fear of stigma and/or that physical
symptoms would then be misattributed to mental illness.
Participants discussed: anxiety, seizures, psychosis,
mood changes, cognitive dysfunction and varying levels
of depression, with a significant minority having felt sui-
cidal. Some participants had not reported these symp-
toms. Those who had ‘plucked up the courage’, or
whose key physician had noticed or explicitly asked,
were often those with the most trusting medical relation-
ships. They generally reported empathetic and very sup-
portive responses:
I became really stressed and depressed.... He [rheumatologist]
was worried about my stress levels and the effect it would have on
my immune system ... referred me to a charity ... supports people
with life-threatening and life-limiting diseases. (Participant 13, fe-
male, 40s)
Table 4 gives examples of physician impact on patient
health-care-seeking behaviour. Negative reactions from
patients included: avoidance, withdrawal and difficulty in
making trusting relationships. Positive reports centred
largely on joint decision-making, medication adherence
and openness in reporting difficulties.
Theme 6: empowerment
Diagnosis was often reported as the first step towards
empowerment, because it provided validation, an expla-
nation for the reduction in previous abilities and im-
proved knowledge to assist self-management. Some
participants described regaining the dignity and self-
respect that was often lost on the journey to diagnosis.
Participants gave many examples of physician-led
empowerment, including: active listening, shared
decision-making, physician belief in patient reports and
result/knowledge-sharing. Teaching self-management
and discussing methods to improve quality of life were
not commonly reported, but much appreciated when
they occurred:
She [rheumatologist] didn’t just treat you and listen ... she defi-
nitely, very cleverly and carefully, through how she spoke, taught
you to live the best life you could with the illness. (Participant 2, fe-
male, 50s)
In contrast, test results not being automatically dis-
seminated to all patients was felt to be disempowering
and identified by many as a systemic failing, with wide-
ranging consequences. Multiple participants reported
belatedly discovering abnormal results, previously not
reported or reported as normal, adding to insecurity and
distrust. Most patients consulted multiple clinicians, who
were sometimes perceived not to communicate fully
TABLE 3Insecurity and a loss of personal and medical
confidence
A damaged sense of self, particularly in those
disbelieved as children
You’re diagnosed as attention seeking and therefore every-
thing you say is written off as fairy stories or exaggerated.
Your character is a character of a liar.... I actually internal-
ized it as a character flaw at that age, that I was feeble....I
don’t know which bits of my personal weirdness could be
attributed to lupus ...I am it, I don’t want it to be me, but I
am it, definitely. (Participant 11, female, 40s)
The damaging impact on care and self-esteem from
inaccurate medical records
My medical record is like a deranged Twitter feed, with one
idea about me feeding into another, creating a completely
unrecognizable image of me as a patient and a person....
My identity was badly messed with when I was young....
For me, there’s been a lot of victim blaming, not only from
doctors but also me being convinced I must be somehow
at fault....Over time, this just erodes what little self-es-
teem and confidence you have in yourself to dust.... The
only person who should be defining who I am is me.
(Participant 5, female, 50s)
Increased self-doubt and reduced self-worth, especially
in those with limited positive serology who have felt
repeatedly disbelieved
I often say to [husband], ‘Do you believe me?’ I have actually
sat and questioned my own sanity.... I no longer trust my
own judgement in relation to me, my symptoms, how I’m
feeling and how I should expect to feel under these cir-
cumstances....It makes you worry about the very essence
of your character....I have absolutely no value whatsoever
as a person or as a human being. (Participant 16,
female, 60s)
The catastrophic repercussions on multiple areas of an
interviewee’s life from the actions and written evi-
dence of a disbelieving GP (despite highly positive
dsDNA)
[GP] has created an alternate personality with my name, a
fraudulent, socially excluded liar, based on no evidence
whatsoever....He included depression and self-harm on
secret DWP form [and] referrals, meaning I was openly
mocked and regarded as a time-wasting malingerer ...
told me forcefully to see a psychologist.... Confirmation of
diagnosis for my employer stated, ‘fairly vague symptoms’
...lost me my job.... The worst thing is how this has per-
meated all aspects of my life.... If he had set about
destroying my life, he couldn’t have done a better job.... I
feel very diminished as a person. (Participant 18, female,
50s)
Persisting medical insecurity from inaccurate medical
opinions
[Hospital consultant] wrote to my GP that I was an argumen-
tative and manipulative lady that was mis-taking her pre-
scription medications ...completely unfounded.... I’ve
only just come across that letter and it’s completely
devasted me ... devastating and infuriating and also my
confidence has been, my medical confidence that’s what
it is, has been affected no end. (Participant 17, female,
30s)
DWP: Department of Work and Pensions; GP: general
practitioner.
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TABLE 4Examples of cumulative and individual physician influence on patient health-care behaviour
Negative health-care behaviours Positive health-care behaviours
Avoiding seeking
medical help
Not reporting
symptoms
Difficulties in building
trusting medical
relationship
Withdrawal from
communication
Engagement Following physician
instructions
Openness in report-
ing medication
difficulties
Self-treat to avoid
‘fight’ to access
care
To get taken seriously
and to get them to
treat you holistically,
you really have to
fight....It’s exhaust-
ing. You feel defeated
before you start real-
ly....Discomfort or
the symptoms have to
be above a certain
threshold before I will
put myself through
the aggro. If it’s below
a certain threshold, I
will put up with it or
self-medicate.
(Participant 11,
female, 40s)
Fear of reporting
mental health
symptoms
I’ve been feeling de-
pressed but I’d never
tell the doctors. I
know it’s from the dis-
ease and what it does
to my brain ...but if
they had that on
notes then everything,
every symptom,
they’d just say it was
the depression ...so
my husband, he’s
actually offered me
some of his [depres-
sion medication].
(Participant 17,
female, 30s)
Long-term impact of
a negative
interaction
He’s [rheumatologist]
used his position of
power to belittle me,
humiliate me....I’m
irrevocably changed
by that relationship
with him because I
can no longer unself-
consciously go to any
doctor ...so he may
well have damaged
me in a way that pre-
vents me getting the
best medical care in
the future.
(Participant 16, fe-
male, 60s)
Physician failure to
establish rapport
When I was trying to
talk, she [rheumatol-
ogy registrar] was tip-
tapping on her com-
puter....I shut down
because she didn’t
make any attempt to
establish any sort of
rapport ...she’d lost
me....You need
someone to open
warmly to get you
feeling comfortable
and to find a way to
express what you
need to say, because
it’s normally compli-
cated. (Participant 2,
female, 50s)
Joint decision-
making
I have confidence in her
[rheumatologist] ex-
pertise, but she
doesn’t use it to talk
down to me ...good
balance between it
being her expertise
and it being my body
and my life.
(Participant 19,
female, 50s)
A mutually trusting re-
lationship leading to
adherence
He [SLE specialist]
believes you. I’ve
never once felt that
he doesn’t believe
me....With every
other rheumatologist
I’d argue [about med-
ication] ...question it
...but I won’t with
him: ‘Okay, you’re the
boss’. (Participant 17,
female, 30s)
Teamwork and sup-
port leading to hon-
esty in reporting
non-adherence
We work together to
find what’s best for
me....I am very hon-
est with my GP and
rheumatologist about
what I’ve taken and
what I haven’t, what is
working for me and
what isn’t ...they’re
quite supportive of
this. (Participant 10,
male, 20s)
GP: general practitioner.
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with each other and/or not to understand individual se-
rological results as well as the patient. Therefore, receiv-
ing all results was felt to improve security and the ability
to self-manage and to facilitate communication between
specialists.
Requesting records and test results was often part of
increasing assertiveness and self-advocacy, largely in-
volving either reaching a ‘tipping point’ of frustration or
feeling empowered by positive medical relationships or
support from LUPUS UK and peers. Becoming increas-
ingly knowledgeable and appropriately assertive was
widely perceived to improve quality of care:
Things have changed dramatically though, with the help of the
[LUPUS UK] forum ... and after asking [rheumatologist] to follow the
[BSR] guidelines. I’ve learnt so much from the group about rehearsing
appointments, having a script, demanding a clear outcome ...feel so
much more confident than the frightened patient diagnosed ... in a
flippant 5-minute conversation. (Participant 18, female, 50s)
Participants indicated that physician receptiveness to
mutual knowledge sharing was empowering, and re-
ferred to strategies such as ‘sowing a little seed’ for
sharing their knowledge without threatening their doc-
tor’s professional pride. Although many physicians were
amenable to this patient input, others were reported to
react defensively. Several participants suggested that
younger physicians seemed more amenable to consider-
ing patient-sourced information.
Table 5 details further examples of empowerment and
disempowerment, including: the power of a diagnosis,
the feeling of being in control and self-advocacy. Fig. 1
gives examples from five participants of physician/pa-
tient methods of mitigating common areas of persisting
medical insecurity and negative health-care behaviours.
Listening, belief, time, knowledge and teamwork were
all identified as important.
TABLE 5Examples of empowerment, disempowerment and navigating the medical relationship as an ‘expert’ patient
Empowerment
A diagnosis was often the first
step in empowering these patients
My initial reaction was of profound relief. After all those years of strange symp-
toms and accusations of mental weakness, everything fell into place. Far from it
being my fault in some way or evidence of lack of true grit, I could see that I had
actually overcome much....Knowing what I was facing felt more empowering
than facing a mystery opponent. (Participant 19, female, 50s)
From physicians, by involving
patient in decisions and in clinic
letters
He [respiratory consultant] is very thoughtful....He does the letter ... in front of
me. He dictates it and will pause and look at me like, ‘Is that the right thing to
say? Are you happy with that?’. Yeah, and then I can say, ‘Oh no, you missed a
bit’, or ‘I don’t quite understand that decision’. So I really like that. I feel like I’ve
had a sort of summary [and] I can question it there and then, rather than get a
letter 8 weeks later where you’re copied in and you think, ‘Really?’. (Participant
6, female, 40s)
Self-advocacy Most of them [A&E clinicians] don’t have much knowledge about lupus.... They
say, ‘your ESR’s not raised’ ... You haven’t got an infection’....I educate
them....I say I am fully diagnosed with systemic lupus.... They all listen. On
more than one occasion, senior doctors have sent in junior doctors to speak to
me so they can learn. (Participant 2 female, 50s)
From being listened to and given
some control by physicians
She [psychiatrist] is just a terribly good counselling person, listening person ...
made you feel in control ...really helpful to have, yeah, just time to talk the
whole thing through. She said, ‘I don’t think I need to see you again, but you
can any time ... I don’t think you need pills for this but you could’....You felt
like that put you in the driving seat. (Participant 6, female, 40s)
Disempowerment
By withholding test results It’s part of that whole being invisible in the process again ... when they don’t think
the results of the tests, they somehow aren’t anything to do with me.... The
tenor of the interaction is that the patient is the supplicant asking the person
with power for their grace and favour.... We’ve got so many specialists
involved....I’m the one who can do it [coordinate sharing of results] but they’re
withholding information from me. (Participant 4, male, 50s)
By physicians restricting access
to specialists
[Rheumatologist] said, ‘A neurologist’s time is like gold dust. If I refer you to a neu-
rologist and he thinks I’m wasting his time it’ll reflect badly on me professionally,
and I’m not willing to do it’. (Participant 1, female, 40s)
Sharing disease and research information with physicians
They say, ‘You’ve been seeing Dr Google again’. You think, you know, all I’m trying to do is make things better for myself. I’m
not trying to make you look like a clown or anything.... They haven’t got the time to sit down and spend hours and hours on
the Internet, whereas I have. (Participant 9, male, 60s)
Tactfully negotiating the patient–physician relationship as an ‘expert’ patient
I try my best not to let encounters with medics disempower me.... Basically, I try to avoid going in as the disempowered, emo-
tionally conflicted supplicant I was until 2010....On the other hand, I avoid going in so arrogantly I risk precipitously alienating
whichever medic I’m seeing ...willingness to negotiate respectfully and diplomatically. (Participant 20, female, 60s)
A&E: accident and emergency.
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Discussion
Although trusting relationships with specific physicians were
commonly reported amongst these SLE and UCTD
patients, many participants demonstrated persisting psy-
chological damage and insecurity, usually initiated in the
period of diagnostic uncertainty. This accords with previous
studies that found that these diseases create uncertainty
for both patients and physicians [9,21] and that arduous di-
agnostic journeys challenged patients’ self-worth [7,9]. We
found this particularly apparent if symptoms were perceived
as being disbelieved or dismissed, especially during child-
hood/adolescence. Difficulties were experienced in develop-
ing an identity that was not defined by the disease, its
limitations and disbelief from the medical profession and
their families in an organic cause for their symptoms.
Although behavioural interventions in juvenile SLE have
shown positive results [22], our participants mostly
remained misdiagnosed until adulthood. As DeQuattro et al.
[23] also suggested, targeted interventions among those
with adverse childhood experiences should be a priority.
Clinical judgement and blood test results are often in-
accurate in SLE/UCTD patients, especially during infec-
tions. This can be the result of dysfunctional immune
systems, atypical presentations and the effects of immu-
nosuppressants. Combined with experiences of a lack of
physician knowledge of these diseases, especially in
A&E, patient trust in the accuracy of clinical judgement
and existing testing was often low. This frequently led to
persisting insecurity, even post-diagnosis, that life-
threatening symptoms would be missed/misdiagnosed,
and there were multiple reports where this had occurred.
For less severe, although still life-changing, symptoms,
such as fatigue and pain, the insecurity was largely that
these symptoms would be dismissed and disbelieved.
Listening and taking a patient’s self-reported symptoms
seriously were therefore identified as of key importance,
in agreement with several other studies [4,24,25].
Although it has been found that lupus patients often
under-report flares [26] and minimize symptoms [27] and
that the majority of physicians are unaware of this ten-
dency [27], there has been little research to ascertain
the causes of under-reporting. Our study identifies that
previous and anticipated disproportionate responses to
symptoms, usually dismissal and over-reassurance, are
perceived as a major contributor to health-care avoid-
ance and symptom under-reporting. This is in agree-
ment with recent cancer research showing reporting
delays amongst those previously ‘reassured’, owing to
not wanting to appear hypochondriacal [28].
Consultation time constraints and patients’ embarrass-
ment in reporting multiple symptoms also led to under-
reporting and prioritizing which symptoms to report.
Many participants reported a lessening of self-doubt
and increased self-efficacy over time and discussed
how an informed, assertive, mutually respectful method
FIG.1 Patient quotes highlighting key physician and/or patient methods of mitigating the frequent areas of persisting
insecurity
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of working with physicians improved communication
and care. Knowledge was generally acquired from sup-
portive key physicians, online, LUPUS UK and peers.
Previous studies have also found that this can lead to
empowerment [29] and can enhance active participation
and improve the medical relationship [30]. However,
there were frequent concerns expressed over how to
share extensive knowledge tactfully, the lack of auto-
matic provision of all test results, and reports of inaccu-
rate, sometimes offensive and/or damaging, written
information from physicians. These concerns demon-
strated remaining power differentials that could impact
optimal treatment, trust and self-management. Although
shared decision-making was almost unanimously pre-
ferred in routine appointments, trusted key physicians
adopting a more directive approach at times of health
crises could enhance medical security.
Several participants in our study expressed great trust
in key physicians who demonstrated excellent patient-
centred care, in accordance with Hashim’s [31] sugges-
tions of eliciting the patient’s agenda, active listening
and expressing empathy. However, many lupus patients
report less favourable communication experiences with
doctors [32], and almost all our participants also de-
scribed medical interactions where they had felt dis-
missed and their priorities/concerns had not been
elicited or addressed. This is in line with research show-
ing that clinicians elicited the patient’s agenda in only
36% of encounters [33]. Failure always to elicit the
patient’s agenda might explain, in part, our finding of a
widespread perception of a disparity in patient–physi-
cian priorities, with psychosocial and quality of life con-
cerns (especially fatigue, pain, mental health and
cognitive impairment) often felt to be neglected.
Previous studies record similar disparities and suggest
the need for more comprehensive, holistic assessments
and approaches towards well-being [10,11]. The prefer-
ence of some physicians for directly addressable issues
if time is limited [34] might need to be revised, because
our participants clearly articulated a priority for listening
and empathy as opposed to purely solution- or
medication-focused discussions. Further research into
the patient–nurse relationship is required, but it seems
likely that greater use of specialist nurses and provision
of psychosocial in addition to medication-focused sup-
port could help to meet this need and lead to earlier de-
tection of (often undisclosed) mental health concerns.
SLE is associated with an increased risk of mental
health symptoms [3537], with estimates of 70% of
patients having neuropsychiatric manifestations [36].
Prevalence of depression in SLE is estimated at 30–50%
[35,37], and one study found that 20–50% of rheuma-
tological patients have psychosocial problems attribut-
able to their disease, which were frequently not
discussed with their physician [38]. Failure to elicit mental
health symptoms is therefore of concern, particularly give
that many of our participants also felt their mental health
was directly damaged by difficult diagnostic journeys
and/or negative medical interactions. Thus, clinicians
might need to discuss these symptoms sensitively (and
signpost patients to relevant services if necessary), taking
into account that patient reticence in disclosing symp-
toms might be a protective mechanism from having had
their symptoms dismissed or misdiagnosed previously.
Many of these SLE/UCTD patients had high levels of
medical knowledge and might present as competent
and prepared, with an outward appearance of confi-
dence. Nevertheless, the majority of participants
reported high anxiety during medical encounters and
persisting insecurity. Trauma and PTSD in response to
misdiagnosis and/or the impact of chronic illness have
been reported in other studies [39,40], but we believe
that this is the first study to consider the potential of
medical PTSD from negative medical experiences pre-
and post-diagnosis in some SLE/UCTD patients. Further
research is needed to investigate how widespread this
problem might be and to inform measures to prevent
and ameliorate medical PTSD among these patients. We
hypothesize, from the detailed stories shared, that it
might take many positive experiences for medical trust
slowly to be rebuilt, whereas one negative experience
can potentially have the effect of precipitating an imme-
diate return to an earlier position of fear and insecurity,
particularly in the most traumatized. A positive first step
would be for key physicians to acknowledge difficult di-
agnostic journeys and discuss the (often persisting) im-
pact on patient well-being and behaviour.
Although purposively selected to ensure a wide range
of demographic and disease characteristics, the partici-
pants were not representative of the wider lupus/UCTD
population in terms of education and ethnicity. Owing to
a very low proportion of non-white respondents to the
survey, it was not possible to ensure a representative
range of ethnic groups for the interviews. This under-
representation is, unfortunately, common in rheumato-
logical research [41] and might have influenced the
results owing to differences in symptoms [42] and dis-
ease severity between ethnic groups, indicating the po-
tential for a disproportionate adverse impact of delayed
diagnosis [43]. Ethnicity might also differentially impact
patients’ experience of both lupus [7] and interactions
with physicians [44].
Survey participants agreeing to be interviewed gener-
ally had a high level of education, which could have
influenced our results, particularly in relationship to level
of knowledge acquired and trust in physicians. For ex-
ample, Berrios-Rivera et al.[45] found that higher edu-
cational attainment was associated with decreased trust
in physicians among lupus patients, although Jolly et al.
[46] detailed that educational level was not associated
with differences in satisfaction with care. Given that re-
cruitment was through online support groups, partici-
pants might not be representative in terms of medical
experiences and level of disease knowledge. However,
despite these identified sampling limitations, the persist-
ing medical insecurity and the subsequent effect on
medical relationships and health-care behaviour are
likely to be replicated among many SLE/UCTD patients
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(and other, even less well-understood CTDs, such as
SS), owing to the diagnostic delays and frequency of
psychological misdiagnoses identified in these patient
populations as a whole [14]. The consistency of these
patients’ experiences with previously reported research
and triangulation from the survey results [4] and forum
discussions enhances validity. Our follow-up research
will also elicit the physician viewpoint and examine
these findings quantitatively to assess whether they are
replicated in patients with a more generalizable range of
education and ethnicity by stratified sampling from hos-
pital clinics. Our research team also plans to explore the
acceptability and feasibility of various methods of
patient-directed training and peer support.
Conclusion
In conclusion, we found, in agreement with previous
studies, that trust in specific physicians is often very
high [47] but that persisting insecurity and distrust in the
wider medical profession often remain. The need for
greater awareness (and action) amongst physicians on
this widespread persisting medical insecurity is the key
message from this research. These patients and the re-
search team have together identified several simple
actions from physicians that do not require any addi-
tional time or cost but could vastly improve SLE/UCTD
patient medical experiences. These include: physicians
assuring patients that they will be available in times of
crisis, believing and validating patient symptoms, pro-
viding compassionate, holistic care and acknowledging
the ongoing impact from often traumatic diagnostic jour-
neys. Empowerment, and all physicians being more
aware of the need to promote trust and security fre-
quently and actively, would help to combat the unpre-
dictability of the disease and ameliorate some of the
psychological and behavioural impacts from previous
negative medical experiences.
Acknowledgements
A potential methodological limitation of medical research
is that it is usually designed and carried out by clinicians
and/or researchers on, rather than with or by patients.
We believe that a great strength of this study is that
patients were equal co-contributors from design to
write-up and that the patient members of the research
team communicated regularly as a group, discussing
the emerging themes and helping to ensure that the pa-
tient perspective remained centre stage (while being
subject to the same tests of validity as other perspec-
tives). LUPUS UK staff and rheumatologists were also
involved in every stage of the research, providing regular
input throughout every stage of the study, including re-
view of the draft manuscript. Particular thanks and ac-
knowledgement to all the participants and to the expert
patient representative members of the study team:
Michael Bosley, Moira Blane, Lynn Holloway and Colette
Barrere.
Funding: This work was funded by LUPUS UK.
Disclosure statement: The authors have declared no
conflicts of interest.
NOTE: Medication adherence and reporting of adher-
ence will be combined with quantitative measures and
published at a later date.
Supplementary data
Supplementary data are available at Rheumatology
Advances in Practice online.
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... Preference for "reliable" sources of medical information, including physicians and other healthcare professionals, may be a litmus for trust in medical professionals and the medical infrastructure more broadly, a concept that has been historically difficult to define [22,23]. Prior work suggests that trust in medical professionals is associated with greater adherence to treatment recommendations [24,25] and improved chances of accessing needed medical care [26,27]. Given student-run clinics' role in bridging gaps in healthcare access and reducing health disparities, this study examines the role that student-faculty collaborative clinics may have in promoting positive health information seeking habits, possibly through trust in medical professionals and other "reliable" sources of medical information and advice, thereby fostering positive health seeking behaviors. ...
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The Crimson Care Collaborative (CCC) is a network of seven student-faculty clinics in the Greater Boston area that provides primary care services to underserved patient populations and social services to address social determinants of health. Promoting healthy behaviors and health-seeking habits are among the most important focuses in the field of public health and medicine. The main objective of this study is to understand the influence that the student-faculty collaborative clinic in Chelsea has on where patients seek out medical information and if that influence changes with time. To study this phenomenon, a retrospective analysis was conducted for six years of data (2013–2019). The CCC Chelsea patient survey database included 349 surveys for 229 patients. McNemar’s test for paired patient survey data showed no significant difference between health information seeking preferences before and after a CCC visit ([2.783], p = 0.093). Chi-square comparing these three visit types is associated with a significant p-value of 0.025 (χ2 = 7.374). Patients who are at their second visit at CCC are more likely to report favoring reliable sources of medical information, and patients at their third visit are increasingly more likely to report first consulting reliable sources of medical information, including doctors and other healthcare providers. Fisher’s test showed no significant difference between health information seeking preferences for patients who last saw a health professional less than 6 months prior to survey administration and greater than 6 months prior to survey administration at a significance level of 0.05 (p = 0.06). Our results suggest that clinic attendance may have an impact on patients’ use of reputable sources of medical information in CCC Chelsea, and the positive impact that clinic attendance has on health information seeking habits may be long-standing.
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Objectives To explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses, and medical support, to identify common experiences, preferences and unmet needs. Methods Following a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. Results There were 233 eligible respondents. Mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six percent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future healthcare-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, and yet the majority reported receiving no or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. Conclusion Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
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Background: The objective of the current work was to assess the frequency of non-adherence behaviors and potential association with patients’ experience with healthcare and beliefs in medicines self-reported by patients with four different chronic conditions. Methods: Patients responded anonymously to a survey comprising five non-adherence behaviors (based on physician and patient input), an assessment of patients’ experience with healthcare using the validated Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC), and a validated Spanish version of the Beliefs about Medicines Questionnaire (BMQ). Associations of non-adherence behavior were analyzed using logistic regression models. Results: Of 1,530 respondents, 53.1% reported ≥1 non-adherence behavior. Non-adherence rates were 59.8% in diabetes mellitus (DM), 56.0% in rheumatic disease, 55.6% in inflammatory bowel disease, and 42.8% in human immunodeficiency virus (HIV) infection patients (p < .001). IEXPAC and BMQ scores were higher in adherent vs. non-adherent patients. In multivariate analysis, non-adherence behavior was strongly associated with lower overall BMQ, lower BMQ Necessity scores and higher BMQ Concerns scores (p < .001 for all), and with a lower IEXPAC self-management score (p = .007), but not with the overall IEXPAC score. Non-adherence was more frequent in DM patients compared with HIV infection patients (p < .001). Conclusions: Patients’ beliefs in medicines - a lower perception for the necessity of medication, and higher concerns in taking medication - and low patient self-management experience score were associated with non-adherence behavior. These are modifiable aspects that need to be addressed to increase medication adherence in chronic disease.
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Purpose of review: The current review focuses on recent population-based studies that have examined the burden of lupus, disease outcomes, and gaps in quality of care, with an emphasis in research addressing health disparities. Recent findings: The Centers for Disease Control and Prevention National Lupus Registries underscored higher susceptibility of both systemic lupus erythematosus (SLE) and primary cutaneous lupus among people of color, compared with whites. Not only does SLE disproportionately strike people from racial and ethnic minorities, those individuals are also at increased risk of developing severe manifestations following SLE diagnosis. Mortality is higher and death occurs at a younger age among blacks, compared with whites. Furthermore, ongoing Centers for Disease Control and Prevention-supported population-based lupus cohorts, along with research by other groups, have provided new insight into the role of social determinants on outcomes and opportunities to improve care in diverse lupus populations. Summary: While descriptive epidemiological efforts have been critical to providing more accurate estimates of the burden and mortality of lupus across diverse demographic groups, emerging research suggests a significant influence of psychosocial and healthcare system factors on disease outcomes. These current efforts represent important steps toward the development of clinical and public health interventions aimed at eliminating health disparities in lupus populations.
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African American women are disproportionately impacted by systemic lupus erythematosus (SLE), a chronic, potentially debilitating autoimmune disease; and also experience more rapid progression and worse outcomes compared to other groups. This study examined if racial discrimination is associated with disease outcomes among 427 African American women with a validated diagnosis of SLE in the Atlanta, Georgia metropolitan area, recruited to the Black Women's Experiences Living with Lupus (BeWELL) Study (2015-2017). Frequency of self-reported experiences of racial discrimination in domains such as employment, housing, and medical settings was assessed using the Experiences of Discrimination measure. SLE activity in the previous three months, including symptoms of fatigue, fever, skin rashes, and ulcers, was measured using the Systemic Lupus Activity Questionnaire; irreversible damage to an organ or system was measured using the Brief Index of Lupus Damage (BILD). Multivariable linear regression analyses examining the Systemic Lupus Activity Questionnaire and log-transformed BILD scores indicated that increasing frequency of racial discrimination was associated with greater SLE activity (b=2.00, 95% CI=1.32, 2.68) as well as organ damage (b=0.08, 95% CI=0.02, 0.13). Results suggest that comprehensive efforts to address disparities in SLE severity should include policies that address issues of racial discrimination.
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From a 1-year survival of less than 50% before the discovery of glucocorticoids to over 90% at 10 years in most dedicated centres, the spectrum of SLE has profoundly evolved. Despite this improvement, several major challenges currently remain. The aim of this review is to analyse what are, according to us, the 10 most important contemporary challenges in the management of SLE. Among those are the need to treat to target to favour disease remission (or low disease activity), limit the use of glucocorticoids, derive more comprehensive tools for the evaluation of disease activity, develop more effective drugs (yielding successful trials), dissect the heterogeneity of the disease both at the molecular and genetic levels, identify relevant biomarkers for individualised treatment, manage fertility and pregnancy, tackle comorbidities such as cardiovascular risk, the prevention of infections and osteoporosis, improve the network of care (from the patients’ perspective), and favour a holistic approach (integrating fatigue, adherence to treatment, physical activity). Altogether, these 10 contemporary challenges in SLE may be considered as a roadmap for those involved in the daily care of patients with SLE, as well as for researchers who may wish to contribute to an improved management of this rare and complex disease.
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The nature of physician–patient interaction can have a significant impact on patient outcomes through information-sharing and disease-specific education that can enhance patients’ active involvement in their care. The aim of this systematic review was to examine all the empirical evidence pertaining to aspects of physician–patient communication and its impact on patient outcomes. A systematic search of five electronic databases (MEDLINE, PsycINFO, EMBASE, CINAHL, and Web of Science) was undertaken from earliest record to December 2016. Studies were eligible if they: (1) included adult participants (18 years or over) with a diagnosis of a rheumatic condition; (2) were of quantitative, qualitative or mixed methods design; (4) were surveys, observational and interventional studies; (5) were published in the English language; and (6) reported findings on either various physician–patient communication aspects alone or in combination with physical and psychological outcomes. Searches identified 455 papers. Following full-text retrieval and assessment for eligibility and quality, ten studies were included in the review; six quantitative, one mixed methods, and three qualitative papers. Higher levels of trust in the physician and active patient participation in the medical consultation were linked to lower disease activity, better global health, less organ damage accrual, greater treatment satisfaction with fewer side effects from the medication, more positive beliefs about control over the disease, and about current and future health. Future research could focus on the design and implementation of interventions incorporating communications skills and patient-education training.
Article
Objective: Non-white racial/ethnic groups remain underrepresented in rheumatic disease-related research despite being disproportionately affected by these disorders. We aimed to systematically review the literature regarding underrepresented patients' perceptions of participation in rheumatic disease research and develop strategies to improve diversity. Methods: A systematic search of Embase, Pubmed-MEDLINE, PsycINFO, and Cochrane was performed through October 2018. Two independent reviewers identified 642 unique studies; seven met inclusion criteria (peer-reviewed articles, published in English in last 20 years, adult population, focus on underrepresented patients' participation in rheumatic research). Five coauthors provided final approval of included articles. Data abstraction was performed and common themes and key differences were determined and adjudicated. Results: The seven articles included (n=1,892 patients, range n=20-961) evaluated factors associated with research participation of underrepresented populations. Five related to lupus, two to rheumatoid arthritis and five focused on African American patients, one on Hispanic. Five of the studies provided quantitative data through surveys (n=3) and chart review (n=2), while two utilized qualitative analyses. Key themes regarding underrepresented patients' perceptions of participating in research included: 1) importance of trust in the patient-physician relationship, 2) understanding of heterogeneity within and between ethnic groups, 3) need for authentic academic-community partnerships, and 4) the implications of strict inclusion criteria on study participant diversity. Conclusion: Limited evidence exists regarding underrepresented patients' attitudes towards research participation in rheumatology and further investigation is warranted. The themes identified provide a starting point for future interventions that promote increased diversity in rheumatic disease-related research studies. This article is protected by copyright. All rights reserved.
Article
Purpose Adverse childhood experiences (ACEs) are associated with poor adult health and immune dysregulation. The impact of ACEs on patients with autoimmune disease is unknown. We compared the prevalence of ACEs in Systemic Lupus Erythematosus (SLE) patients to population‐based survey estimate and investigated relationships between ACEs and SLE outcomes. Methods Data derive from the California Lupus Epidemiology Study (CLUES), a sample of adult SLE patients. Participants completed a 10‐item ACE questionnaire covering 3 domains (abuse, neglect, household challenges). We estimated ACEs prevalence in 269 CLUES participants compared to 2015 California Behavioral Risk Factor Surveillance System (BRFSS) geographically matched respondents, standardized (age, sex, race/ethnicity) to CLUES participant characteristics. We examined associations for patient‐reported and physician‐assessed health status measures with overall ACE levels and domains using multivariable linear regression, controlling for socio‐demographics, nephritis, and childhood onset SLE. Results Though specific domains varied, overall ACE levels were similar for CLUES and BRFSS respondents. Among SLE patients, 63.2% had ≥1 ACE and 19.3% had ≥4. ACEs were more prevalent in those who were older, women, Latino or African American, without college degrees, and with lupus nephritis. In adjusted models, higher ACE levels and ACE domains were associated with worse patient‐reported SLE activity, depression, and health status, but were not significantly associated with physician‐assessed SLE activity, damage, or severity. Conclusions Given the association between ACE levels and important patient‐reported outcomes in SLE, our study reinforces the need for prevention of ACEs in childhood and for clinical interventions to promote resilience among adults who have experienced ACEs. This article is protected by copyright. All rights reserved.
Article
Introduction: Patients with systemic lupus erythematosus (SLE) have a better survival than decades ago; nevertheless, they still experience a low health-related (HR) quality of life (QoL). Areas covered: After defining QoL and HRQoL we review the need to assess it, its elements, how to measure it, its predictors and its impact and potential interventions to improve it. Expert commentary: Physicians assessments of disease activity and damage do not capture the patients’ perspective of their health, and these differences could lead to nonadherence to therapy. Based on that, a comprehensive evaluation of SLE should include the assessment of HRQoL or the sum of the physical, psychological and social perception of wellbeing, influenced by the patient’s illness. The most consistent predictors of low HRQoL are older age, poverty, lower educational level, behavioral issues, some clinical manifestations and comorbidities. HRQoL impacts negatively on dealing with stress, intimal relationship, home and job-related activities and treatment adherence. At the present, there are no successful specific therapeutic strategies aimed at improving it.
Article
Background: Eliciting patient concerns and listening carefully to them contributes to patient-centered care. Yet, clinicians often fail to elicit the patient's agenda and, when they do, they interrupt the patient's discourse. Objective: We aimed to describe the extent to which patients' concerns are elicited across different clinical settings and how shared decision-making tools impact agenda elicitation. Design and participants: We performed a secondary analysis of a random sample of 112 clinical encounters recorded during trials testing the efficacy of shared decision-making tools. Main measures: Two reviewers, working independently, characterized the elicitation of the patient agenda and the time to interruption or to complete statement; we analyzed the distribution of agenda elicitation according to setting and use of shared decision-making tools. Key results: Clinicians elicited the patient's agenda in 40 of 112 (36%) encounters. Agendas were elicited more often in primary care (30/61 encounters, 49%) than in specialty care (10/51 encounters, 20%); p = .058. Shared decision-making tools did not affect the likelihood of eliciting the patient's agenda (34 vs. 37% in encounters with and without these tools; p = .09). In 27 of the 40 (67%) encounters in which clinicians elicited patient concerns, the clinician interrupted the patient after a median of 11 seconds (interquartile range 7-22; range 3 to 234 s). Uninterrupted patients took a median of 6 s (interquartile range 3-19; range 2 to 108 s) to state their concern. Conclusions: Clinicians seldom elicit the patient's agenda; when they do, they interrupt patients sooner than previously reported. Physicians in specialty care elicited the patient's agenda less often compared to physicians in primary care. Failure to elicit the patient's agenda reduces the chance that clinicians will orient the priorities of a clinical encounter toward specific aspects that matter to each patient.