RHEUMATOLOGY
Rheumatology 2015;54:1448–1453
doi:10.1093/rheumatology/kev009
Advance Access publication 9 March 2015
Original article
It’s not just the joints, it’s the whole thing: qualitative
analysis of patients’ experience of flare in psoriatic
arthritis
Anna R. Moverley1, Karen A. Vinall-Collier2 and Philip S. Helliwell1
Abstract
Objective. Flare is a commonly used term in arthritis, including PsA, but remains undefined. This study
seeks to explore patients’ experience of flare.
Methods. Eighteen semi-structured interviews were undertaken with patients with PsA in an informal
clinical setting. Patients were purposively sampled from specialist clinic lists to reflect the major elements
of the psoriatic disease spectrum. Approximately one-third of patients reported themselves to be in a flare
state at the time of the interview. Transcripts underwent thematic analysis according to the recommendations of Braun and Clarke (Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–101).
NVivo software was utilized, with initial coding reflecting the source data, such as pain, feeling miserable
and feeling slowed down. Codes were then grouped into associated clusters. These clusters and the
interrelationships were then summarized into emergent themes.
CLINICAL
SCIENCE
Results. The mean age of the patients was 44 years, and patients’ average disease duration was 4.5
years. Nine main overarching themes pertaining to flare were identified: physical symptoms, social withdrawal, psychological symptoms, fatigue, loss of normal function, triggers, management of pre-flare,
management of flare and timing. These show some degree of overlap and are interlinked, with some
degree of temporality emerging as related to patients’ experience of flare.
Conclusion. This study has identified a number of components of flare in PsA from the patient perspective. Although the emergent themes are of an overlapping and interactive nature, it is clear that flare in PsA
is more than a swollen or tender joint count as measured in clinical practice.
Key words: disease flare, psoriatic arthritis, qualitative research, patient perspective, symptoms.
Rheumatology key messages
.
.
.
Flare in PsA is more than a tender and swollen joint count
Patients with PsA experience a wide range of symptoms while in the flare state
Further work needs to be done to identify key flare domains in PsA from the physician’s perspective
Introduction
PsA is a chronic, disabling condition that affects up to
30% of people with psoriasis. The spectrum of disease
is wide, involving joints, skin, nails, enthesitis, dactylitis
1
Leeds Institute of Rheumatic and Musculoskeletal Medicine (LIRMM)
and 2Academic Unit of Health Economics and Dental Public Health,
University of Leeds, Leeds, UK
Submitted 16 April 2014; revised version accepted 20 January 2015
Correspondence to: Philip S. Helliwell, Leeds Institute of Rheumatic
and Musculoskeletal Medicine (LIRMM), University of Leeds, 2nd
Floor, Chapel Allerton Hospital, Harehills Lane, Leeds LS7 4SA, UK.
E-mail: [email protected]
and spinal disease. Patients with PsA often describe a
flare of their disease. However, unlike in other inflammatory arthritides [1–8], there has so far been little work on
establishing a definition of flare in PsA, although a handful
of existing articles provide varying descriptions, incorporating some to almost all aspects of the disease spectrum
[9–12]. In contrast to the lack of current work in PsA, there
is a growing wealth of information as regards flare in RA.
The OMERACT group initially identified that patients did
not consider synovitis an essential part of flare; in fact,
many experienced flare as a much more widespread collection of systemic symptoms [3]. Recent international
focus group work concludes that flare can be
! The Author 2015. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: [email protected]
Patients’ experience of flare in PsA
experienced as a complex, multi-layered, whole-body
experience [2].
Since it is the patient who experiences the flare of disease, we propose to establish a patient-driven definition
of flare in PsA by eliciting the patient perspective.
Qualitative research methods provide the ideal methodology for this type of study [13]. Further, a patient-defined
definition is essential to fulfil the face validity section of the
OMERACT filter [7].
Flare in PsA has been variably described to date as
absence of remission [10] or absence of minimal disease
activity [12], both of which refer to not meeting a set of
predefined disease activity criteria. A further definition of
psoriatic disease flare is provided by Kivitz, in which flare
is defined as a part inversion of an ACR20 response [9].
However, it has been shown in RA that patients may require a small change in disease state to consider disease
as worsening, but large changes to note disease as improving, as the intensity of change is not symmetrical between the two extremes [1]. Only one article in the
literature refers to a self-reported flare in PsA, and this is
given no further qualification [11].
There are very few qualitative studies in PsA [14].
Existing work tells us that concepts important to psoriatic
patients are not well measured by available instruments
[15], and even basic concepts of disease activity are not
adequately covered by existing measures—the PsA
Quality of Life measure (PsAQoL) and the Psoriatic
Arthritis Impact of Disease questionnaire (PSAID) being
the only standardized PsA-specific tools [16, 17]. There
is also a discrepancy between physicians’ and patients’
measurements of disease [18]. One paper alone has
explored the patient experience of living with PsA [19],
which is described as an ongoing, dynamic process of
balancing [19]. Therefore, a need has been identified
and more work is required in this area. In this article we
seek to explore patients’ experience of flare, and management strategies involved in coping with disease flare as
and when it occurs.
A.R.M., and those interested in participating chose appropriate appointment times to attend for interview at a later
date.
All patients fulfilled the classification criteria for PsA
(CASPAR) for PsA [20]. A.R.M. conducted a total of 18
semi-structured face-to-face interviews with patients in
an informal clinical setting, each lasting between 25 min
and 2 h.
In line with recommendations [13], there was no rigid
procedure for interviewing, and a topic guide (see supplementary data, available at Rheumatology Online) was
used only as a guideline. It was not exhaustive, and new
topics generated by the participant were used to inform
and update further interviews in keeping with a method of
constant comparison.
Analysis
All interviews were audiorecorded and transcribed verbatim, and each transcript was verified by A.R.M. NVivo soft!
ware was utilized (nVivo version 9.0 , QSR International,
2012). Thematic analysis may be used for identifying, analysing and reporting patterns (themes) within data and is
described by Braun and Clarke [21]. In accordance with
their guidelines, the transcripts were initially read, re-read,
annotated and coded by A.R.M. in consultation with
K.A.V-C. (phases one and two of analysis). Similar ideas
brought up by different patients were studied in greater
detail, leading to the identification of key candidate
themes. Subthemes and overarching themes were subsequently developed and refined by discussion between
A.R.M. and K.A.V.-C. to complete phase three. All candidate themes were then reviewed, and redundant themes
were explored and discounted as appropriate, as outlined
in phase four of analysis. Final themes were agreed and
named and the report produced (phases five and six).
Negative case analysis was also undertaken.
Results
Patients
Methods
Patient selection and interviews
This study was carried out at a tertiary care Rheumatology
unit in England. Local ethics committee approval was obtained (12/YH/0041) and all patients gave informed written
consent according to the Declaration of Helsinki. Patients
were purposively selected from clinic lists by A.R.M. and
P.S.H., with assistance from clinical nurse specialists in
rheumatology, to include those who had experienced
recent or previous significant peripheral disease flare
and to reflect a range of disease characteristics (oligoor polyarthritis), age, gender, disease duration and medication. We also chose to interview a number of patients
with significant axial disease (mean BASDAI 7.1) or skin
burden [mean Psoriasis Area Severity Index (PASI) 4.6].
These patients again reflected a range of age, gender,
disease duration and medication. Patients were approached by telephone or at a routine clinic visit by
www.rheumatology.oxfordjournals.org
The mean age of the patients was 44 years, and the average disease duration was 4.5 years. Approximately onethird of patients (n = 5) reported themselves to be in a state
of flare at the time of the interview (Table 1).
The data collected in the interviews were subjected to
thematic analysis as outlined above in order to gain a
sense of the predominant or important themes. The
themes that were identified, categorized, coded and analysed therefore serve as a reflection of the entire dataset,
thus offering a rich overall description. Nine main overarching themes pertaining to flare were identified and
showed interaction as well as some overlap, as illustrated
in Fig. 1.
Unsurprisingly, physical symptoms emerged as a significant burden in patients’ experience of flare. This theme
included such nodes as pain, heat, stiffness, swelling and
psoriasis. ‘It’s blooming well sore, you could fry an egg on
it’ (patient 18) was initially coded as nodes heat and
pain, two of the subthemes under the umbrella of physical
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Anna R. Moverley et al.
TABLE 1 Patient characteristics and flare state at time of interview
Pseudonym
Gender
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
Patient
M
F
F
M
M
F
F
F
M
F
F
F
M
F
M
M
M
M
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
Age,
years
Disease
duration,
months
56
46
37
31
53
34
65
64
46
30
52
48
51
53
30
24
25
52
15
26
132
48
33
44
44
44
38
29
28
16
19
240
6
8
23
180
Currently in
flare
Significant skin
burden
Significant axial
burden
N
Y
Y
N
N
N
N
N
Y
N
Y
Y
N
N
N
N
N
N
N
N
N
N
N
N
N
Y
N
N
N
Y
N
N
N
Y
Y
N
N
Y
N
N
N
Y
N
N
N
N
N
N
N
N
Y
N
N
Y
Interview
length, mins:s
29:35
49:27
59:04
43:14
64:32
30:37
23:57
36:41
35:32
76:16
27:09
44:36
25:16
55:20
28:54
23:46
24:31
38:59
N: no; Y: yes.
FIG. 1 Thematic diagram of overarching themes pertaining to flare
symptoms. In some cases, the psoriasis would be a significant part of the flare. ‘When the flare comes, when I get
my flare up, I get my psoriasis pretty bad’ (patient 8).
Symptoms were often multiple at any one time, so that
patients experienced a number of aspects of physicality in
combination, for example, swelling, throbbing, heat and
stiffness. ‘The finger wouldn’t bend and I felt it was the
swelling that was stopping it bending. It was swollen from
the knuckle on the hand to that knuckle there, totally
1450
swollen. It throbbed all the time. It wasn’t so much painful
as a hot throbbing sensation, and as I said it was hot to
the touch, very hot to the touch’ (patient 7).
Fatigue also emerged as another significant burden in
patients’ experience of flare. Despite having a lot of commonality with physical symptoms in the descriptors used
by patients, it was such a dominant theme, seen across all
participants, that it warranted differentiation from other
physical symptoms; patients complained of feeling tired,
battery gone and being flu-like. ‘. . . And [I] keep myself
going but it’s really difficult because the tiredness just
takes you over, takes over . . . it is hard. It’s hard because
you can’t keep your eyelids open, you’re fighting it’ (patient 11). ‘It was almost like I needed plugging in like a
mobile phone, the battery had gone’ (patient 13). ‘It’s the
fatigue . . . and it’s just absolutely, it’s like having flu but not
having flu, it’s absolute bone weariness’ (patient 18).
Patients also experienced a variety of other related symptoms such as lack of motivation and loss of appetite, as
linked to fatigue, while experiencing disease flare: ‘. . . this
kind of feeling of just being generally unwell and not being
able to motivate myself . . .’ (patient 14). ‘You’ve seen me
at my worst, and I lost a stone in weight and I’ve never
been that thin’ (patient 12).
Patients noticed a significant loss of normal function
while in the flare state: ‘I couldn’t even brush my hair’
(patient 10). In addition to loss of independence and
increased dependence on others, patients noted loss of
movement and loss of hobbies. ‘I couldn’t function. I
couldn’t function at all, and I’m used to being active and
doing lots of stuff, and then I couldn’t do anything. I hardly
left the house for months’ (patient 1). ‘When it’s bad l’ll
www.rheumatology.oxfordjournals.org
Patients’ experience of flare in PsA
say, ‘‘Right you’re going to have to do the shopping
yourself . . . can you change the bed, I can’t grip’’ . . .’
(patient 8).
Psychological symptoms included frustration, depression, embarrassment and fear. ‘Having to depend on
other people to do things for me I find really frustrating’
(patient 11). Fatigue and loss of normal function were
cited by patients as contributing to some of the psychological symptoms they described, highlighting the impact
of these themes upon the patient. ‘I know I mentioned this
before, but the mental health side, the tiredness that that
causes and the frustration, and I think if you asked a question about how frustrated do you get with your arthritis
most people would put a 10’ (patient 2). ‘I can’t say I
was bothered for [the wedding], which is a great shame
because, looking back, I’ve missed out on an awful lot’
(patient 13).
A further knock-on effect of the physical symptoms, and
indeed the psychological symptoms, was the social
impact, which was significant for a number of patients
experiencing disease flare. Patients noted loss of social
life, not wanting physical contact and social withdrawal.
‘[It has a knock-on effect] . . . on my work, my marriage,
my poor husband. He’s been fantastic, but it does affect
me, what I want to do at home. I can’t be bothered to do
anything. I won’t want to go out. I like to do sporting activities, but I can’t do them. I know that I want to keep healthy,
but I can’t go and do what I want to do’ (patient 12).
These first five overarching themes relate to the patients’ experience of the flare itself—, i.e. an overwhelming
collection of physical, psychological and emotional symptoms that clearly interact. There is a significant psychological element to the physical symptoms, in addition to
the psychological aspect of the disease in its own right,
and the fatigue element crosses these two subdivisions.
There is, as a result, a significant loss of function and
social interaction, which in turn has a huge impact on
the patient’s everyday life, much more than might be expected from a painful or a swollen joint or an area of skin
disease.
What was initially understood by the research team to
be patients’ understanding of flare was further classified
following the creation of a thematic diagram. The following
four themes have an added dimension of temporality and
can be best understood in terms of thinking about the
directions/interactions outlined in Fig. 1: triggers, timing
of flare, management of pre-flare and management of
flare.
Patients noticed particular triggers for flare, even if not
recognizing a pre-flare state, including such as ‘if it was
damp weather it was definitely worse’ (patient 1). ‘[If I]
have been doing a lot of physical work, that would be
the main question to ask, because, more often than not,
that’s what sets it off’ (patient 15). ‘I know that if I’ve done
something, like . . . lifted a box the other day . . . I will know
next day I will be ok, but the day after I will be hurting . . .’
(patient 2).
The node timing of flare included duration of flare, which
is variable: ‘. . . you can tell the difference . . . I know it’s not
www.rheumatology.oxfordjournals.org
going to flare up to a bad attack, whereas . . . when I wake
up if it’s really severe I know . . . so you can tell the degrees
of the flare up’ (patient 12). ‘Sometimes it could just be a
few hours . . . sometimes it could last all day, maybe a few
days’ (patient 17).
Management of pre-flare included the node warning of
flare: ‘I know through the night that it’s going to be a bad
day because I get up and down constantly’ (patient 2).
This understanding of disease appears to come with
greater disease experience, and can be seen more clearly
in patients with longer disease duration. For example, patients with short disease duration would tend to cite their
flare as having no warning. ‘There’s no kind of like . . . the
day before you feel a bit more achy’ (patient 16). Those
with many years’ experience would notice things more
readily: ‘I didn’t know what was happening in the first
one . . . [now] the minute it starts to be more than my
hands and wrists, it starts to ring alarm bells’ (patient 14).
Patients also developed strategies for management of
early pre-flare once recognized: ‘I’ll just say to him,
‘‘Right, I’m having a lazy day today.’’ . . . I get the burning
sensation, and then I think, Right, just calm down now, put
them down and leave things alone. And I do know when
it’s coming, yes’ (patient 8). ‘I just have to be right gentle
with myself and understand that I have to do things, and I
have to move, and that I just sort of, I’m gentle’ (patient
18). Personal adaptations form part of the management of
the condition, and patients tend to adapt activities to suit
their current disease state.
The management of flare theme expands on this idea
and includes nodes such as self-medication and self-help,
resting, avoiding things or, alternatively, just getting on
with it. Patients also noted a flare could be managed by
trying to understand it and by seeking medical attention. ‘I
try to understand the disease, and I try to help myself as
much as I possibly can . . . whether it’s doing the
physio[therapy] exercises every day or reading up on
things or trying to maintain a reasonable diet’ (patient 3).
‘When the pain is that bad and I can’t stand it anymore,
and I’ve taken painkillers and anti-inflammatories and
nothing seems to be working, and then I think it may be
time to go that bit further and come down and have the
steroids . . . so then I’m fine for a good six months or so’
(patient 11).
Patients appear to recognize the flare state earlier once
disease is established, and management also reflects this.
Patients learn to self-manage, and avert the full flare in
many cases. Recourse to medical help occurs when all
else has failed.
Discussion
Patients describe a variety of symptoms in relation to a
flare. Physical symptoms occur in combination, but there
are also many other aspects of a flare, such as fatigue,
psychological dysfunction, quality of life issues and loss of
normal function. Flare in PsA is a lot more than a swollen
joint count as measured in clinical practice.
The management of flare theme gave insight into the
patient journey through flare and the learning experience
1451
Anna R. Moverley et al.
that patients gain from disease duration. Patients early in
the disease course identify a pre-flare state, and, with
time, learn to manage triggers and a pre-flare in order to
prevent progression to the full flare situation by recourse
to self-management strategies and early medical intervention, as outlined above. It is only when this approach fails
to halt the flare’s progression, or when the flare becomes
out of control that a full flare may emerge, requiring more
definitive action.
While data saturation was reached by patient 11, negative case analysis identified two noticeable exceptions regarding the patients’ journey through management of
flare. This prompted further interviews and exploration to
help differentiate whether these were indeed isolated
cases or more common within the population. First, patient 3 unexpectedly described a permanent flare state,
having reached the end of the treatment line, which was
a new concept for us. In this situation, the patient journey
has effectively failed, as there are no therapeutic options
to curtail flare. Second, the patient’s journey also fails if a
patient has no warning of flare or understanding of triggers (patient 7), so that there is no option to pre-empt the
inevitable occurring. Overall, however, it has become
clear that there are grades and stages of flare that patients
learn to manage, and patient education becomes ever
more useful with advancing disease duration. This may
be explored further in future work and have clinical implications in terms of patient education.
In contrast to our work in PsA, current work in RA has
concentrated more on the breakdown of flare into different
stages [2, 22]. Flurey’s work [22] outlines steps whereby a
patient moves from daily life through pre-flare and flare to
unmanageable flare. Hewlett et al. [2] describe six stages
of flare: symptoms and early warnings, self-management
of intensifying symptoms, defining as uncontrollable flare
and seeking help when symptoms cannot be contained,
contributed to and underpinned by the individual context
and uncertainty. Although the shape of the thematic diagram is different from ours, the underlying base components of flare are similar in the two different diseases.
In Hewlett’s work [2], patients in RA flare describe joint
pain, swelling, heat and stiffness as part of symptoms and
early warnings. Although these are all important components of our physical symptoms theme, there is also the
added significant dimension of skin disease in the work
presented here. Patients in flare of both diseases describe
a profound compromise in function, a loss of participation,
social withdrawal, emotional distress, and fatigue. Some,
but not all, patients in both conditions experience an early
warning of an impending flare.
In contrast, systemic features are listed as a major issue
in rheumatoid flare [2], whereas in a psoriatic disease flare
these features were subsumed into themes of physical
symptoms and fatigue. Patients in rheumatoid flare describe reduced cognition and lack of concentration, but
in our work these features were covered by the overarching themes of fatigue and loss of function. Disturbed sleep
is listed separately as a feature in rheumatoid flare, but is
subsumed into the fatigue theme in our work. In summary,
1452
excepting skin symptoms, components of disease flare
are similar in the two conditions but their weight is different. In both conditions, patients will attempt to selfmanage intensifying symptoms, define an uncontrollable
flare and seek help when symptoms cannot be contained.
It is indeed true for PsA as well as for RA that there is a
depth and breadth of symptom intensity and consequences that extend beyond a count of painful, swollen
joints [2].
Strength and limitations
The strength of our paper lies in the grounding of the research within the patients’ accounts by using a qualitative
approach. A possible criticism is that the interviews were
undertaken by a clinician, which may have created a more
medical agenda for the discussion topics, although no
ongoing doctor–patient relationship existed at the time
of interview. The interviews were also conducted within
the hospital setting, although outside the clinic setting,
which may have impacted upon patients’ full disclosure of
the nature of their flare and preferred management
processes.
We had considered that a relationship between peripheral disease flare, skin disease, axial disease and other
aspects of flare might have emerged, but although one
patient noted that a joint flare would always be preceded
by a skin flare, we did not have enough material to explore
this further.
Funding and ethical approval permitting, it would have
been beneficial to adopt a more grounded approach to
interviewing, allowing patients to be approached across
different National Health Service trusts and outside the
specialist clinic in our tertiary centre, thereby accessing
a range of disease experiences, progression and care
pathways. However, this study did sample a good patient
range of disease characteristics, age, gender, disease
duration and medication. Sampling from the tertiary setting alone could explain the high percentage of patients
currently experiencing flare, but this has most likely had a
positive influence on the findings in terms of reducing
recall bias, as fewer patients were describing a previous
and subsequently settled flare.
Clinical and research implications
This study has identified that a flare in PsA is much more
than a swollen joint count or a worsening of psoriasis. A
number of PsA-specific composite measures have been
developed [23, 24], based on the core set of outcomes for
PsA proposed at OMERACT-8 [25]. One limitation of these
indices, possibly because of minimal patient involvement
in their development, is that they may not address areas of
disease activity important to patients, including fatigue,
psychological impact and social withdrawal. We propose,
therefore, to take the prominent nodes and emergent
themes from our data set towards a formal definition of
flare by undertaking a patient and physician Delphi to
identify core domains of flare in PsA. The ultimate goal
of such a process would be the development of a PsA
flare tool for use in both clinic and clinical trials.
www.rheumatology.oxfordjournals.org
Patients’ experience of flare in PsA
Acknowledgements
The authors would like to thank the participating patients
for their involvement in this study. A.R.M. was funded in
part by a grant from Arthritis Research UK.
Funding: This study was part funded by The Psoriasis and
Psoriatic Arthritis Alliance, UK.
Disclosure statement: The authors have declared no
conflicts of interest.
Supplementary data
Supplementary data are available at Rheumatology
Online.
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