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Patients’ and carers’ views and expectations about intensive management
for moderate Rheumatoid Arthritis: a qualitative study
L. Protheroa*, S. Georgopouloua, J. Gallowaya, R. Williamsab, A. Bosworthc
1
and H. Lemppa
Academic Department of Rheumatology, King’s College London, London, UK; bWells Park
Practice, London, UK; cNational Rheumatoid Arthritis Society (NRAS), Maidenhead, UK
a
(Received ~~ ~~ 2015; accepted ~~ ~~ 2015)
Intensive management for rheumatoid arthritis (RA) involves frequent hospital visits and
adjusted doses or combinations of medication. Research is currently underway to test
whether or not intensive management strategies are valuable in moderately active disease,
however, patient views on intensive management in this disease group are unknown. The
objectives of this study were to explore the views and expectations of patients with
moderately active RA and of carers of patients with moderately active RA. We conducted
focus groups and one-to-one interviews in 2014 with 14 participants (nine patients, five
carers) from four rheumatology clinics across three London Hospital NHS Trusts. NonEnglish speaking patients were included with the assistance of a professional translator.
Focus groups and interviews were audio-recorded and transcribed and transcripts analysed
using a Framework Analysis approach. Four main themes were identified: ‘Hopes and
Expectations of Intensive Management’, ‘Acceptability of Intensive Management’,
‘Patient Education’ and ‘The Importance of Continuity of Care’. Our main findings were
that attendance at frequent clinic appointments was largely acceptable to patients and
carers. Views on taking higher doses of medication depended on how stable patients were
on their current treatment regime. Continuity of care from the rheumatologist and the
*Corresponding author. Email: [email protected]
L. Prothero et al.
provision of written/verbal information about intensive management were important to
patients and carers.
Keywords: Rheumatoid arthritis, intensive management, qualitative research methods, views
and expectations
Introduction
Intensive management strategies use a combination of disease-modifying anti-rheumatic drugs
(DMARDs) alongside newer biologic agents (Scott, Wolfe & Huizinga, 2010). The National
Institute for Health and Care Excellence (NICE, 2009) recommend intensive management for
patients with early active RA, a third of whom achieve remission which can halt joint damage
(Smolen et al., 2009).
Qualitative studies conducted in England (Lempp, Hoffmann, Hatch & Scott, 2012;
Marshall, Wilson, Lapworth & Kay, 2004), Belgium (Meyfroidt et al. 2014) and the
Netherlands (van Tuyl et al. 2008) have investigated the views and experiences of patients with
active disease undergoing intensive management. Patients’ expectations focused on
improvement of their physical symptoms, followed by a desire to maintain some independence
(Lempp et al. 2012). Positive reports included improvements in quality of life and negative
experiences related to in-efficacy or side-effects of the treatments (Marshall et al. 2004).
Educational needs differed among patients (Marshall et al. 2004; Meyfroidt et al. 2014) and
patients reported higher levels of anxiety about medication side-effects and placed greater
importance on trust in healthcare professionals earlier on in the treatment pathway (Meyfroidt
et al. 2014). Interestingly, van Tuyl et al. (2008) found that rheumatologists tended to be more
reluctant to use combination strategies or high doses of medication compared to patients.
There is now a growing cohort of patients with ‘moderate’ RA, who have achieved
some degree of disease control yet have not reached remission and fall outside of published
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treatment guidelines. Research is currently underway to test whether intensive management
strategies are efficacious in moderately active disease (Scott, 2013).
The evidence to date reflects patients with active disease. The purpose of the current
study is to explore the views and expectations of patients, and of carers of patients, with
moderately active RA about intensive management strategies. This is important as it may affect
patients’ adherence to the new treatment and their views on it efficacy.
Methods
Recruitment
Purposive sampling was used to recruit patients (n=9) and carers (n=5) (Table 1) from four
rheumatology clinics across three London Hospital NHS Trusts. The sample size was based on
previous published qualitative studies (Lempp et al. 2012; Marshall et al. 2004). The inclusion
criteria for patients were: moderate disease activity (DAS28: 3.2-5.1), who had received at least
one DMARD for a minimum of six months, and were currently receiving at least one DMARD.
Carers were carers of patients as described in the inclusion criteria. Participants were
approached by a designated member of the clinical team at each site.
Data collection
Semi-structured topic guides were developed based on discussions with the multi-disciplinary
research team and three ‘patient experts’ who provided feedback on its suitability and
relevance. Two separate focus groups were held for patients (n=3) and for carers (n=4). Semistructured interviews were also conducted with 6 patients and 1 carer, which included face-toface and telephone interviews (Sturges & Hanrahan, 2004). Non-English speaking patients
(n=2) were interviewed with the assistance of a translator (Phelan & Parkman, 1995).
L. Prothero et al.
All audio-recorded focus groups and interviews were conducted by one researcher who
was not involved in the direct care of any of the participants (L.P.). Each participant was asked
to carefully read and sign a consent form before the start of the focus group or interview (the
document was posted to participants who took part in a telephone interview). On average, the
focus groups lasted one hour and interviews 20 minutes. They took place between April and
July 2014 following receipt of ethical approval (Edgbaston Research Ethics Committee,
13/WM/0361).
Data Analysis
Audio recordings were transcribed verbatim and transcripts analysed using a Framework
Analysis approach (Richie & Spencer, 1994). A second rater (H.L.) appraised the emergent
themes from the transcripts and consensus between both researchers (L.P., H.L.) was reached.
To improve the validity of the data the researcher referred back to the original transcripts
throughout the analysis, included deviant accounts (Seale, 1999a), applied single counting
(Seale, 1999b) and the researcher was reflexive throughout the research process (Creswell &
Miller, 2000).
Results
(1) Hopes and expectations of Intensive Management
Patients expressed a desire to improve their physical symptoms (7/9) namely reduced pain (4/9)
and better mobility (2/9) They described how the RA stopped them from engaging in what
were previously routine activities (4/9) which resulted in feelings of frustration (3/9) and
depression (1/9). Patients (2/9) did not want to rely on family members for help with everyday
tasks and hoped intensive management would enable them to be more independent (Table 2).
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In contrast to these accounts two patients stated that they remained independent due to the
milder form of their RA.
Carers also hoped that intensive management would lead to increased
independence (2/5) and improved mobility (2/5) (Table 2).
(2) Acceptability of Intensive Management
Increased medication
The majority of patients (6/9) did not think they had found a treatment regime that controlled
their RA properly and expressed disappointment about past drug combination which did not
lead to symptom relief. Overall, they seemed more willing to try intensive management
compared to patients who responded well and experienced more control with their treatment
(3/9). Some patients (3/9) expressed concerns about taking increased doses of medication
because of potential side-effects (Table 3).
For carers acceptability was influenced by the patients’ past experiences of side-effects,
how long they had been taking the treatment and how the patient was currently responding
(both emotionally and physically) (Table 3).
Monthly appointments
Most patients (5/9) stated that monthly appointments would be acceptable. Some (3/9) believed
that the extra consultations could be beneficial as the current six monthly appointments seemed
too far apart. Patients anticipated that more regular appointments corresponded to being more
closely monitored. These views were in contrast to others (3/9) who were not in favour of
monthly appointments (Table 3).
L. Prothero et al.
Most carers (4/5) agreed that monthly appointments, if in the interest of the patient,
were acceptable (Table 3).
(3) Patient Education
There was significant heterogeneity in patients’ educational needs. A small number (2/9) were
willing to take’ whatever is prescribed’, most (6/9) said that they appreciated verbal or written
information about their treatment and some (4/9) wanted as much information as possible. They
emphasised the importance of receiving relevant information prior to commencement of
intensive management, e.g. potential side-effects (4/9) and long-term effects of the drugs on
patients’ health (2/9).
Carers’ main interest was information about potential side-effects (3/5).
(4) Importance of Continuity of Care
Continuity of care was important to patients (6/9). Positive aspects included being able to make
appointments to see ‘their’ rheumatologist when needed (1/9), a trusting relationship (1/9), the
clinician performing a thorough examination (1/9) and providing a detailed explanation of any
treatment changes (2/9). Negative reports included difficulty making appointments to see
‘their’ rheumatologist (2/9) and the specialist ‘not knowing what has been happening’ when
patients are seen infrequently (1/9).
Carers (5/5) discussed the confidence they have in their family member’s consultant.
Their main concern if patients were to agree to intensive management would be not seeing the
same consultant.
Discussion
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To our knowledge this this is the first qualitative study with patients and carers exploring the
acceptability of intensive management strategies for moderate RA. Findings were consistent
with previous studies with patients who have active RA (Lempp et al., 2012; Marshall et al.,
2004; Meyfroidt et al., 2014; van Tuyl et al., 2008).
This study also found that attendance at monthly clinic appointments was largely
acceptable to patients and carers. Views on taking higher doses of medication were affected by
how stable patients were on their current RA treatment. Most appreciated the provision of
written/verbal information about medications and welcomed consultations with the same
rheumatologist.
Implications for clinical practice include that intensive management may be acceptable
to some patients with moderate RA. The multidisciplinary team clinicians need to consider the
impact of the patients’ satisfaction with their current treatment when discussing intensive
management as a treatment option. Patients need to be offered detailed information about the
potential side-effects prior to commencement of intensive management.
Strengths of the study are the qualitative methodology and the inclusion of non-English
speaking patients and carers who are often under-represented groups in healthcare research.
Qualitative research can provide additional information that is harder to obtain quantitatively
(Barbour, 2000). Focus groups allow greater insight into the wide range of views that
participants have about a specific issue as well as how they interact in a more ‘naturalistic’
setting (Green & Thorogood, 2009; Liamputtong, 2011). Within the study sample only three
participants were in full-time employment which may have impacted upon the views on
attendance at monthly appointments. Suggestions for future research include exploring
clinicians’ views on prescribing intensive treatment for patients with moderate RA.
L. Prothero et al.
Acknowledgements
We would like to thank the patients and carers who gave up their valuable time to take part in the study
and the nurses and research co-ordinator who helped with recruitment.
Funding
The TITRATE Programme is funded by the National Institute for Health Research’s Programme Grants
for Applied Research Programme [Grant Reference Number RP-PG-0610-10066].
This is a summary of independent research funded by the National Institute for Health Research
(NIHR)’s Programme Grants for Applied Research Programme. The views expressed are those of the
authors and not necessarily those of the NHS, the NIHR or the Department of Health.
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