Combined Care of the Rheumatic Patient
A national framework for musculo-skeletal conditions is currently under development, substantially based on the published Arthritis and Musculoskeletal Alliance standards of care [ 4 ].
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It is anticipated that this will highlight the extensive contribution that these conditions make to secondary care referrals for chronic disabling diseases. 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 ]. A number of different approaches to out-patient care for patients with RA have been suggested.
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. 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.
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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. 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. 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.
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 ]. 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 ].
Content analysis was mainly used for the data analysis, supplemented by discourse analysis. 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. 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.
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.
Most patients reported that when the medical staff searched for new treatment options, it helped them to instill hope. 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.
I feel more independent because of the treatment. Almost half of the patients [ 10 ] mentioned in the interviews that they sometimes resorted to taking their own decisions about medication, dose and frequency.
I was taking four a day. And then, I don't know, after a few years, there was… like a trainee doctor …. 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.
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Because I used to get spasms and muscle cramps, so that really helps with the massage, after the acupuncture and the heat. The progression of RA and the dependence of patients on medication resulted in the most detailed and lengthy comments from all participants. 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. 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. 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. 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? 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.
And 6 weeks later I went back again — no difference, still in terrible, terrible pain. 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. Five of these patients had had such negative experiences of their GPs that they expected no help from them in the future. 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. 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 ]. 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 , , how many years is that?
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So they know me well and my family. Often interviewees raised issues that touched upon their relationship with health care staff, in either primary or secondary care. Normally I am fine. But that day I needed help. 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. I am always friendly with the doctor. I usually get on with everybody, I joke… sometimes the nurses used to come to my bedside and sit down and talk to me. They really understand and see the difference in you. Makes such a change, don't it? 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. 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.
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. The majority of patients [ 16 ] gave less information about the involvement in their care of other health care professionals, e.
This may be related to the fact that only half [ 13 ] reported receiving treatment from a combination of 1—3 of these therapists. 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.
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 ]. 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!
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Everyone's got to learn, haven't they? 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.
Division of Rheumatology, Allergy, and Immunology
Effective chronic illness management, according to Wagner et al. 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.
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. 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. The division provides inpatient and emergency room consultation services. The inpatient consult team consists of an attending rheumatologist plus two core general medicine residents each month, and frequently an elective student. After hours, on weekends and holidays, rheumatology consults are seen by the sub-specialty medicine resident on call who reviews with the attending rheumatology staff.
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Patients requiring hospitalization for rheumatologic diseases are admitted to one of the general internal medicine teams. Members of the division participate in, and lead a broad range of medical education activities for trainees at all levels and across disciplines. The Rheumatology division also accepts a limited number of elective family medicine residents and medical students throughout the year, who are fully integrated into all aspects of our clinical and education programs.
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