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Rheumatology Advance Access originally published online on April 21, 2006
Rheumatology 2006 45(12):1522-1528; doi:10.1093/rheumatology/kel132
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© The Author 2006. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Patients' views on the quality of health care for rheumatoid arthritis

H. Lempp1, D. L. Scott1,2 and G. H. Kingsley1,3

1Academic Department of Rheumatology, King's College London School of Medicine at Guy's, King's College and St Thomas’ Hospitals, Weston Education Centre, Cutcombe Road, London SE5 9PJ, 2Department of Rheumatology, King's College Hospital, Denmark Hill, London SE5 9RS and 3Department of Rheumatology, University Hospital Lewisham, Lewisham High Street, London SE13 6LH, UK

Correspondence to: Heidi Lempp, Department of Rheumatology, King's College London School of Medicine at Guy's, King's College and St Thomas’ Hospitals, Weston Education Centre, Cutcombe Road, London SE5 9PJ, UK. E-mail: heidi.k.lempp{at}kcl.ac.uk


   Abstract
Top
 Abstract
Introduction
 Method
 Results
 Discussion
 Acknowledgements
 References
 
Objective. To study the experiences and views of patients with rheumatoid arthritis (RA) on the quality of health care received in primary and secondary care.

Method. Semi-structured interviews with 26 individual patients with RA; these were stratified by sex, ethnicity and disease duration, based on the treated prevalence cohort of patients attending two outpatient clinics in South East England.

Results. Patients highlighted four main factors which influenced their attitude and approach towards hospital staff and the treatment offered: (i) their past experiences with the National Health Service (NHS), (ii) their own health beliefs, (iii) professional attitudes (e.g. listening to patients, receiving feedback on disease processes) and (iv) organizational aspects (e.g. good communication between health professionals) which would make their visits to the outpatient clinic easier.

Conclusion. Most patients no longer see themselves as passive recipients of care. They appreciate acknowledgement from health care professionals of their contribution towards management of their own chronic illness, and welcome a more equal dialogue with health care staff. This is consistent with the emphasis of the Department of Health document on ‘Supporting People with Long-term Conditions’ such as RA.


   Introduction
Top
 Abstract
 Introduction
Method
 Results
 Discussion
 Acknowledgements
 References
 
The management of people living with rheumatoid arthritis (RA) has progressively shifted from hospital in-patient-based care to out-patient clinics in UK hospitals [1]. This necessitates the delivery of increasingly complex care by a multi-disciplinary team in conjunction with patients’ integrated primary care providers [2–5]. A national framework for musculo-skeletal conditions is currently under development, substantially based on the published Arthritis and Musculoskeletal Alliance standards of care [4]. It is anticipated that this will highlight the extensive contribution that these conditions make to secondary care referrals for chronic disabling diseases. [6] Furthermore, a framework should address the current huge variations in patients’ experiences in the quality of care they receive, including access to specialist care [4].

Given the persistent nature of RA, patients often require assistance with a whole range of physical, emotional and social needs [7, 8], and these cannot be met fully by the medical staff alone. Increasing evidence suggests that knowledge of the disease does not change the behaviour of patients, and that a more active self-management approach is desirable both for patients and their families [9–11]. Furthermore, there is also a question about where these diseases should be managed. Many common chronic diseases, such as diabetes and hypertension, are treated in primary care [12]. This is against a background of additional funding for general practitioners to monitor and treat specific chronic conditions rather than general chronic disease management [13]. However, there is some evidence that patients with RA which is less common either prefer to be cared for in specialist (secondary) rather than primary care [14] or have better treatment outcomes [15]. Finally, the ever increasing number of patients who live with chronic diseases requiring ongoing attention means that medical and nursing staff need a different approach to their care, namely that of continuous support and contribution towards patients’ quality of life, rather than a quick ‘one off’ response to prescribed treatment [16].

A number of different approaches to out-patient care for patients with RA have been suggested. These have focused on developing services which increase patients’ satisfaction by being more receptive to their needs, for example, by using patient initiated out-patient clinic appointments [1], multi-disciplinary team care [2], targeted access to specialist services [6], holistic care [7] and nurse-led rheumatology clinics [17]. Such different strategies are echoed in sociological publications [18–21], although these focus more on the desire of patients to play an active role in their disease management and to be at the centre of their care. Our study was conducted primarily in this latter context. Its aim was to identify for health care professionals, the key RA patients’ experiences, expectations and needs as they attend primary and secondary care. The emphasis therefore differed in uncovering patients’ perspectives first with the view to tailor appropriate service delivery, instead of using operational issues such as an increase in patients’ numbers as a starting point.


   Method
Top
 Abstract
 Introduction
 Method
Results
 Discussion
 Acknowledgements
 References
 
Patient cohorts
This piece of work was a part of a larger project aimed to develop a total quality management (TQM) framework to produce substantial improvements in the satisfaction of patients with RA of the care they receive. The study cohort consisted of 26 patients, attending two out-patient clinics in South East England. Although the organization of both clinics was essentially similar, the main differences were in patient facilities, e.g. parking, communication systems and the number of specialist nursing staff available in each hospital setting. The latter impacted particularly on how much the medical staff could delegate to specialist nurses specific health care needs, such as additional emotional support, education, medication advise, disease activity assessment or teaching self-injection of drugs.

Patients were first stratified by age, gender, ethnicity and disease duration, and then randomly selected to match the socio-demographic characteristics of the whole out-patient clinic population as the sampling frame (Table 1). The recruitment was stopped in a proportional way when saturation was reached for the key themes which repeatedly emerged during the interviews, as identified and noted by HL during the interviewing phase; in other words, when patients’ accounts did not reveal new information. Of the 35 patients invited to participate in the study, nine refused; they did not differ significantly from those who were enrolled into the study. Written, informed consent was obtained from each patient and the study received full ethical approval from the relevant local research ethics committees.


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  		TABLE 1. Socio-demographic characteristics of study cohort (n= 26)

 
Analysis of data
Qualitative data were collected in 1:1 semi-structured interviews (see Appendix 1), which HL conducted either in the patients’ homes (n= 12), in their office (n= 12) or in the out-patient clinic (n= 2) according to the participants’ preference. Interviews lasted between 30 min and over 2 h. Following transcription of the interviews, the identified and repeated themes provided a framework from which mainly content (what the patients said) and discourse analyses (how the patients described their experiences) were carried out [22, 23] with NVivo and Concordance software, including simple counting methods [24]. Combining qualitative and quantitative data is an approach that can assist in the generalizability of the findings [24]. It enhances the analysis and does, therefore, not rely on patients’ accounts alone, thus contributing to the credibility and validity of qualitative research [24]. Other validity checks included the assessment of the plausibility of the accounts in the context of the clinical experiences of the authors, cross-referencing of emerging themes with an independent researcher, asking for clarification and specific examples of important points during the interviews, and the inclusion of negative instances [25].


   Results
Top
 Abstract
 Introduction
 Method
 Results
Discussion
 Acknowledgements
 References
 
Repeated reviews of patients’ accounts identified several key coding phases under which the information was subsequently systematically categorised and linked together. Content analysis was mainly used for the data analysis, supplemented by discourse analysis. Four main themes were identified, which influenced patients’ perceptions. These themes comprised past experiences with the National Health Service (NHS), personal health beliefs, professional issues such as communication between health care professionals and patients and the organization of the service.

Past experiences with the NHS
Over one-third of patients [10] gave noteworthy accounts of experiences of a close friend [1], family member [7] or themselves [2], which impacted directly on their positive [2] or cautious [8] attitudes towards their treatment, health care and expectations of the NHS.

‘My husband was diagnosed with advanced cancer and he was a very fit person... he died very quickly, 13 weeks all together... I think it really devastated me, even now I get so angry... Before if a doctor or somebody of importance talked to me I just sat there and listened but not anymore. I now start asking questions and I say what I feel’. (S7; 66 yrs, female, RA 1–5 yrs)

‘The hospital is excellent, I had my kids there, they saved my son's life in there, I can't complain at all.’ (S25, 43 yrs, female, RA 6–11 yrs)

Personal health beliefs
Patients described a range of internal (hereditary) and external (non-bodily) factors to which they attributed the development of their arthritis (Table 2). For example, 14 interviewees reported that family members in the current or previous generations had some form of arthritis. Fourteen participants identified for themselves, or were told by friends, family or health care staff, that other personal and environmental events played a role in the development of their RA. Almost one-third [7] mentioned that a combination of internal and external factors caused the illness; and 14 patients provided a range of 1–3 external trigger factors.

‘I was thinking why I am having pain I have been overworked... and I am asking if it was childbirth, I got pain, arthritis pain with all my children... I collapsed and then recovered and had pain everywhere [after each birth] ... and lot of doctors said it is some kind of hereditary... this is something [RA] that came by itself, probably it is your diet, probably it is genetic ....’ (S21, 64 yrs, female, RA >12 yrs)


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  		TABLE 2. Internal and external causes [39] of RA suggested by 21/26 patientsa

 
‘It [RA] was brought on through shock or after-shock, a delayed shock from my father having a stroke... my body gave up and it [body] sort of went into shock mode and it cut off’. (S14, 42 yrs, female, RA 1–5 yrs)

Most patients reported that when the medical staff searched for new treatment options, it helped them to instill hope. The majority [22] were clear about when the treatments did or did not work for them, and made references mainly to physical improvements; for example, easier movements [13], less/no pain [12], getting back to normal [7], less/no swelling of the joints [4] or better sleep [2]. The accounts from one-third of patients [8], who had received biologics stood out, with information describing how these therapies had primarily positive physical and emotional effects on their health and social functioning. The most frequently used word was ‘difference’ in relation to emotional well-being, pain, sleep and mobility, compared with the period before treatment with these agents.

‘I have less pain, I am more mobile, I can sleep throughout the night, I have had no flare ups. I feel more independent because of the treatment. I feel much better and have hope now... I can go up and down stairs, get in and out of bed, can dress myself and I can drive again’. (S11, 66 yrs, female, RA 1–5 yrs)

Almost half of the patients [10] mentioned in the interviews that they sometimes resorted to taking their own decisions about medication, dose and frequency. This was often linked to their perception of not feeling well and what in their opinion ‘was good for them’.

‘They’re little yellow tablets. I was taking four a day. And then, I don't know, after a few years, there was... like a trainee doctor .... so she said: "Do you take these pills?" So I said: "No. But don't tell anyone," I said, "but I’ve knocked myself to one." I do that and I keep myself well, I’m not in pain’. (S19, 67 yrs, female, RA >12 yrs)

Half of the patients [13] reported that they had tried one or more complementary therapies for their pain [7], or out of curiosity [6], including acupuncture and massage.

‘I can't do without... acupuncture and massage helps, I just sleep. Because I used to get spasms and muscle cramps, so that really helps with the massage, after the acupuncture and the heat. The heat really, really helped’. (S9, 35 yrs, female, RA 1–5 yrs)

The progression of RA and the dependence of patients on medication resulted in the most detailed and lengthy comments from all participants. This increasing reliance presented a challenge to patients’ previously held health beliefs and led to reluctant compromises to avoid painful deterioration. The phrase ‘having active disease’ was frequently mentioned, for example in relation to ‘flare-ups’, increased pain or tiredness, or high erythrocyte sedimentation rate (ESR) results. Most felt or had been told that they had no choice other than to take potentially toxic drugs to alleviate their symptoms or to slow down the deterioration of their chronic condition. Patients were concerned that these medications often caused a range of minor to life-threatening side effects, and required regular and time-consuming monitoring.

‘I’ve never really liked using pain-killers. So the moment I felt I could stop, I did... and then I started on methotrexate... and I was put on a massive dose of steroids and there was a big improvement quite early on. Then I went on cyclosporin and I put on a lot of weight... the drugs didn't work out, my ESR was creeping up and I was getting more ill and they tried me on lots of different type of RA drugs, all had bad side effects, some knocked my immune system out so much that it was absolutely dangerous ...’ (S26, 34 yrs, female, RA 1–5 yrs)

Virtually, all of the interviewees [25] expressed their hope that new research will find a cure for RA. More than half of the patients [14] were influenced directly by their own participation in research studies or by the benefits they had from current therapies. Some [7] hesitated when asked about the possibilities of a future cure and four stated categorically that they did not expect one would be found.

‘I just think it's good. Any research is good... I went on those clinic trials for the penocillimine and stayed on it for about eight years, I thought it was excellent. I do anything like that, I don't mind... it's helping someone and helping yourself, you know, why not do it?’ (S16, 61 yrs, female, RA >12 yrs)

‘I don't have much hope about research in rheumatoid arthritis... they don't even know what causes it’. (S22, 83 yrs, female, RA 6–11 yrs)

Professional issues
Secondary care
For most patients, expectations of their clinic visits focused on three issues: (i) the standard processes associated with RA assessment and treatment, such as regular monitoring, physical examination, and provision of treatment and alternative options if the therapy was not working [14]; (ii) the provision of support and help when in ‘extra’ need [6], and (iii) whether they perceived an understanding approach from the staff [5].

‘Because I only see the doctor every three months [in the clinic] I should be entitled to be given an examination and to tell me if the joints are getting better or if they are wearing away... I’d like better feedback on the illness.’ (S8, 65 yrs, male, RA 1–5 yrs)

‘They try their best and get me all the things that would help me’. (S13, 74 yrs, female, RA >12 yrs)

‘I expect a warm approach and understanding [of my situation] from clinic staff.’ (S11, 66 yrs, female, RA 1–5 yrs)

Interestingly, three patients (who classified themselves as having ‘mild RA’) felt indifferent about their clinic visits and preferred less frequent visits than suggested by the medical staff.

‘I sort of know what they are going to do, no change really because I don't change a lot.’ (S20, 57 yrs, female, RA >12 yrs)

Primary care
Patients’ experience of the involvement of general practitioners (GPs) in their care was described in both critical and complimentary ways. Of the 26 patients in the study cohort, 24 went to their GP for a first assessment and 11 of them were referred directly to secondary care; two patients went directly to the hospital for their initial diagnosis. In terms of their early care, 11 complained about delays by GPs in making a diagnosis, mainly because of perceived lack of knowledge of arthritis or lack of interest in patients’ presentations.

I went to the doctor's [GP] because I had like a stiff neck, and she said: "Oh, I think it's to do with your neck." So she gave me pain-killers. And 6 weeks later I went back again – no difference, still in terrible, terrible pain. I couldn't move .... I had to wear my husband's slippers that were a size 9, my feet swelled so much. And I kept going down to the doctor's and she kept giving me more pain-killers.’ (S19, 67 yrs, female, RA >12 yrs)

Describing their care after diagnosis, 16 made some critical comments, saying that their GPs did not have time for them [6], had little knowledge about RA [7], did not see them often enough [9], or acted mainly as ‘prescribers’ for medication initiated by the hospital [14]. Five of these patients had had such negative experiences of their GPs that they expected no help from them in the future.

‘My GP, I have... I think I have lost respect... hasn't really served me particularly well. I have to "play act" when I see a GP. So I have to pretend that I am really ill and about to die before anything actually happens, and that is what I now do. I think they are far too busy.’ (S26, 34 yrs, female, RA 1–5 yrs)

Other patients [10] talked in an approving way, reporting positive qualities such as understanding [6], sympathy [5] or long-term personal knowledge of the patient [3].

‘My GP is OK. I have repeat prescriptions. He is aware what is going on with me. If I need help I would call in. I have been to this surgery about ... since 1975, 1976, how many years is that? So they know me well and my family.’ (S10, 67 yrs, female, RA >12 yrs)

Strategies for interacting with health care staff
Often interviewees raised issues that touched upon their relationship with health care staff, in either primary or secondary care. Many interviewees [24] talked about how they present themselves to care providers: almost half [11] of the patients reported that they present themselves as a ‘coper’, especially to secondary care medical and nursing staff, nine said that they tell the staff exactly how they feel, and four were undecided.

‘Yeah I mean I think I am a ‘coper’, but one day I wasn't coping at all well but they [nursing staff] were great. Normally I am fine. But that day I needed help.’ (S4, 57 yrs, female, RA >25 yrs)

‘I tell them the truth, yeah I tell them exactly how I feel.’ (S15, 25 yrs, female, RA >12 yrs)

‘Sometimes I might say [how I feel], but then I would tell them I try.’ (S13, 74 yrs, female, RA >12 yrs)

Particularly in relation to secondary care staff, about a third [8] tried to please medical and nursing staff ‘by not being a nuisance’. The majority [21] thought the staff in the out-patient clinics were responsive to their ever-changing health care needs and would recommend the service to friends and family [21]. In this context, a sense of familiarity with the staff, the running of the clinic and access to other departments in the hospital all played an important part.

‘You can't be rude to the doctor, you have to be friendly. I am always friendly with the doctor. I am easy with the nurses .... I usually get on with everybody, I joke... sometimes the nurses used to come to my bedside and sit down and talk to me.’ (S6, 59 yrs, male, RA >12 yrs)

‘It is the same attitude towards you, whether you are getting better, at least asking how you are. They [nurses] see the improvement, because sometimes they get so close to you, like sisters .... They really understand and see the difference in you.’ (S11, 66 yrs, female, RA 1–5 yrs)

‘Oh yeah I would [recommend the clinic], because they [nurses and doctors] are helpful and everything. Makes such a change, don't it?’(S3, 64 yrs, female, RA >12 yrs)

Interaction with different types of health professionals
The large majority of the sample [24] provided detailed comments about their experiences during the consultations with different medical staff in the out-patient clinics and these highlighted two important professional issues: communication with doctors and the attitudes of doctors towards patients (both positive and problematic). The classification was chosen to reflect the views patients expressed in the context of the interview. Table 3 shows the range of examples given by the 24 patients.

‘I have a good relationship with them [doctors] and I can talk to them about anything. And I feel that I’m listened to. And if I have any worries or queries, you know, they [doctors] do take it on board, yeah. So I do feel that... I do feel that I do have a good relationship with them as well, you know.’ (S23, 53 yrs, female, RA 6–11 yrs)


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  		TABLE 3. Communication and attitudes of medical staff; examples given by 24/26 patients

 

In contrast, almost all [25] described their encounter with the nursing staff in positive terms, and patients’ accounts revealed a focus on four main themes: their direct clinic involvement with them, nurses acting as a go-between between patients and doctors, nurses’ positive attitudes towards patients and nurses having to fill in for the shortcomings of the medical staff.

‘Well the doctors rely very much on the nurses to cover for them. I certainly feel that. The nurses are great, everyone is nice, polite and friendly, and that matters. I think the doctor would rather be doing the research, I feel I am wasting his time because I can walk in the room and speak.’ (S8, 65 yrs, male, RA 1–5 yrs)

The majority of patients [16] gave less information about the involvement in their care of other health care professionals, e.g. occupational therapists, physiotherapists, podiatrists or chiropodists. This may be related to the fact that only half [13] reported receiving treatment from a combination of 1–3 of these therapists.

‘I mean the podiatrist... she looks at my feet as they are now and works out the insoles of my shoes, and that's that. I mean there is nothing they can do about pains now ...’ (S6, 46 yrs, male, RA 6–11 yrs)

Organizational issues
Impact of visits and blood tests
The clinic visits and regular blood monitoring were perceived as non-intrusive by more than half of the cohort [14], five made no comment, and seven confirmed inconvenience, of whom, almost all worked (full or part-time) or had severe physical disability. Half of the people reported that they prefer to have consultations on their own for a variety of reasons: e.g. potential interference by others, a preference for coming alone, or because family members or friends were busy. Eleven interviewees preferred to bring others to the clinic, because of child-care duties, as a matter of course, or to have an extra person present to obtain information or for company and support [3].

‘I could bring someone but I see no reason why I should, apart from probably keeping me company. It's probably nice for another ear to hear what's happening. But I don't find it's necessary. I think my judgment is good enough. And if it's not, well then tough!’ (S7, 66 yrs, female, RA 1–5 yrs)

Most patients [21] were positive about the presence of medical or nursing students during the consultations; some [5] expressed reservations, largely because they wished to raise private concerns (gynaecological/emotional) during the consultation.

‘No I don't have a problem [with the presence of students]. Everyone's got to learn, haven't they?’ (S20, 57 yrs, female, RA >20 yrs)

‘Sometimes I don't like it, because I don't know them [medical students], I mean everybody has to learn, sometimes I tolerate it, sometimes I don't... I refuse medical students for stuff to do with pregnancy, I couldn't stand it, I just say no.’ (S24, 39 yrs, female, RA 1–5 yrs)

The organization of clinics
Patients were specifically invited to provide feedback on what works well and suggestions for improvements on the running of the clinics (Table 4). There was no major difference in the accounts between the two clinics in relation to complimentary comments, despite some variation in clinic facilities and major differences in the number of specialist nursing staff.


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  		TABLE 4. Organization of clinics—examples of positive aspects and potential improvements

 
Some female patients (6/22) reported that they preferred to talk about general health, emotional or gynaecological issues with female staff members (nurses or doctors) rather than with male medical staff, due to perceived uncomfortable or inappropriate responses by them in the past.
‘After the second anti-TNF treatment I had thrush the whole time I was on it. And I talked to the doctor about it and he was sort of terribly... he was like... clearly... but I talked to the nurse and she just said: "You can't live with thrush, not for this amount of time." So she understood.’ (S1, 40 yrs, female, RA 1–5 yrs)


   Discussion
Top
 Abstract
 Introduction
 Method
 Results
 Discussion
Acknowledgements
 References
 
Effective chronic illness management, according to Wagner et al. [3] requires ‘comprehensive system changes rather than adding on new features to an unchanged system.’ Our ‘listening to patients’ approach therefore needs to be understood as a starting point in evaluating and reshaping our service delivery of out-patient care. From patients’ perspectives, a series of clear views, suggestions and perceptions emerged, which provided useful ideas and pointers about how services could be more tailor-made to the patient's needs.

This qualitative study was conducted in two out-patient clinics with a small sample of 26 patients, which allowed focusing on detailed descriptions and their meanings supported by simple counting. Moreover, the data was examined primarily through content analysis (CA), but discourse analysis (DA) was also used [22, 23], for example, the way patients talked about how they try to please rather than being a burden to clinic staff. This meant that language was not only considered as a means of communicating information or stories, but also as a medium from which knowledge could be built. This combined application of CA and DA methods in the data analysis has been endorsed by Silverman and Seale [26, 27]. From this study it is not possible to assess how generalizable the findings are, although they do emanate from two different clinics. In any case, they are valuable as they generate important questions. In general, the results indicate positive aspects with the current service delivery, but also emphasize the desire for greater patient involvement and partnership. The findings showed minimal differences between the two study cohorts, which were mainly confined to a variation of local facilities. Despite the diverse ethnic and socio-demographic background of the study cohort (see Table 1), there was a surprising consistency in the results, which was unexpected; the only exception was that some female patients preferred female medical and nursing staff for selected health issues.

The study confirms that both the patients’ past experiences of health care and their health profoundly affect their attitudes to clinic staff, medication and alternative therapies or self-medication. They also influence their views about causes of their illness and the potential of research to provide a cure. Such events and perspectives need to be more actively explored during out-patient clinics appointments. A number of studies identified the importance of patients’ health beliefs in their own care and the quality of the patient–doctor relationship [28, 29]. Both can facilitate concordance to take medication as advised, if they think that its necessity outweighs their concerns, when explored within the context of shared decision making [30] during the consultations.

The role of the GP in the care yielded a mixed picture. Many patients were unhappy about the limited GP input at the time of diagnosis, and subsequently perceived them mainly as prescribers with an apparent lack of specialist knowledge and time. For a few patients, the situation had become so unsatisfactory that they avoided their care altogether. However, for over one-third, GPs and practice nurses played an important part in their treatment. This related mostly to their attitudes i.e. being sympathetic or understanding and knowing the patient over a long time period. Patients’ accounts implied two separate ‘medical worlds’, with seemingly little complementation, which requires closer links across both settings. In the current debate about chronic disease management, stronger integration and better communication between primary and secondary care are regarded as imperative [3, 5, 31]. However, some of the patients’ comments about lack of knowledge raise concerns about how much of the care of inflammatory arthritis can be immediately transferred to primary care, paralleling concerns brought up in previous studies [14, 15].

In relation to professional concerns, interviewees were clear about their core expectations when seen in secondary care: an assessment on the progression of the illness and appropriate medication, obtaining support and advice, and an understanding approach by staff members. Almost half of them admitted that they present themselves as a ‘coper’ to the clinic staff, to avoid being a burden, and almost one-third preferred to be on friendly terms with staff rather than expressing critical comments. Many commented that medical and nursing staff were responsive to their changing needs and that they would recommend their RA clinics to others.

Further questioning about participants’ encounters with secondary health care staff elucidated a number of important subtleties, specifically about the communication between doctors and patients and the attitudes towards patients by medical and nursing staff. In general, patients were more critical about doctors than about nurses (Table 3). The comments made focused mainly on the lack of explanations given to patients during the consultation about medication, the results of investigations and the disease process, including the perception that patients are not listened to or taken seriously. In contrast, the feedback about the nursing staff by patients was much more positive. Psychological care [32] and longer consultation time [33] are particularly appreciated by patients with RA, which medical staff in secondary care are less able to provide because of greater case loads and, therefore, less time. Close teamwork between medical and nursing staff was considered as helpful by patients, as this opened the way to direct access to doctors when their condition deteriorated or to nurses when the medical staff was under pressure. This emphasizes the need to ensure that specialist nurses are available for all patients, who could play a pivotal role in the coordination of mutual communication, effective service delivery, use of adequate patient-focused outcome measures and the encouragement of a partnership between patients and multi-disciplinary team members [34].

In relation to the organization of the out-patient clinics, patients were generally satisfied with the service and provided specific ideas that would make their visits easier by taking their personal circumstances into consideration, for example, to avoid clashes between hospital appointments and their working hours, although some local studies in England [14, 35] suggested that evening clinics are not needed. The majority welcomed medical and nursing students during the consultations due to direct learning opportunities for future health care professionals. Patients largely felt that bringing families and friends to the clinic was acceptable to the clinic staff. A balanced gender mix of clinic staff could provide improvements so that female patients feel less intimidated to discuss personal, health, obstetric or gynaecological questions with female staff. Similar to previous publications [14, 17, 36], good communication, efficiency and continuity of staff were identified as positive factors which contributed to the smooth running of the clinic, including reduced waiting times.

In conclusion, patients nowadays appear less willing to be perceived as passive recipients of care but appreciate acknowledgement of their contributions to managing their condition and being treated as equal partners with health professionals [30]. This requires evolution of current professional attitudes and approaches towards a more patient-centred care model.

Formula


   Acknowledgements
Top
 Abstract
 Introduction
 Method
 Results
 Discussion
 Acknowledgements
References
 
We are grateful to all the patients in this study for their time and commitment to contributing so openly, the consultants and their out-patient staff, Dr Simon Carmel for his help in validating the data, Ms Floss Chittenden for her support with the transcriptions of the interviews, and the Arthritis Research Campaign for funding the project. We are pleased to acknowledge financial support for this study from the Arthritis Research Campaign (Programme Grant S0682 and Integrated Clinical Arthritis Centre Grant P0572) and from the National Health Service R&D Support Funding to King's College Hospital and University Hospital Lewisham.

The authors have declared no conflicts of interest.


   References
Top
 Abstract
 Introduction
 Method
 Results
 Discussion
 Acknowledgements
 References
 

  1. Hewlett S, Kirkwan J, Pollock J, et al. (2005) Patient initiated outpatient follow up in rheumatoid arthritis: six year randomised controlled trial. Br Med J 330:170–75.[Free Full Text]
  2. Davis RM, Wagner EH, Groves T. (2000) Advances in managing chronic disease. Research, performance measurement and quality improvement are key. Br Med J 320:525–26.[Free Full Text]
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Submitted 7 November 2005; revised version accepted 22 March 2006.
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D. L. Scott and D. P. M. Symmons
The role of specialists in managing established rheumatoid arthritis
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