Patient-initiated hospital follow-up for rheumatoid arthritis

S. Hewlett, K. Mitchell, J. Haynes, T. Paine1, E. Korendowych and J. R. Kirwan

Rheumatology Unit, University of Bristol Division of Medicine, Bristol Royal Infirmary and
1 The Family Practice, Western College, Bristol, UK


    Abstract
 Top
 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Objectives. To evaluate the clinical efficacy, cost and acceptability of a shared care system of patient- or general practitioner (GP)-initiated hospital review in rheumatoid arthritis (RA).

Methods. A 2-yr randomized controlled trial of routine rheumatologist-initiated review was compared with a shared care system. Shared care patients had no routine follow-up but patients or GPs initiated access to rapid review by the multidisciplinary team via a nurse-run helpline. Control patients had a rheumatologist-initiated medical review at intervals of 3–6 months. Clinical and psychological status, resource use, and patient and GP satisfaction and confidence were assessed. Three-monthly clinical data were assessed (blind) for safety monitoring, with failure set at a 20% increase in pain, disability or disease activity.

Results. Two hundred and nine established RA patients participated, of whom 182 were evaluable. Safety-net failures were not different between groups. Shared care patients had less pain (24 months, 3.9 cm on a 10-cm visual analogue scale vs 4.8 cm for controls; P < 0.05), a smaller increase in pain over 2 yr (+ 0.4 cm vs +1.6 cm for controls; P < 0.01), greater self-efficacy (6, 15, 18, 21 months, P < 0.05), used 33.5% less resources (£208 per patient per year vs £313 for controls; P < 0.001) and were more confident in the system (6, 9, 12, 18, 21, 24 months, P < 0.01 to P < 0.001).

Conclusions. A patient-initiated system for hospital review over 2 yr offers some clinical benefit compared with the traditional system, using fewer resources and attracting greater patient confidence. Longer-term assessment of the system would be appropriate.

KEY WORDS: Rheumatoid arthritis, Hospital follow-up, Patient-initiated, Cost, Pain, Disability, Self-efficacy, Satisfaction


    Introduction
 Top
 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Rheumatoid arthritis (RA) is a chronic but variable disease requiring continuing specialist and multidisciplinary care [1], often including lifetime routine reviews by hospital rheumatologists. Patterns of hospital review vary but most patients attend every 3 months initially, extending to 6–12 months as the course of the disease becomes established. Planned follow-up review of RA patients forms up to 75% of the average rheumatologist's workload [2]. Consequently, out-patient clinics are heavily booked in advance and, as the system becomes difficult to manipulate, both routine new patient waiting time and the wait for urgent review during disease exacerbations are unacceptably long, causing dissatisfaction for patient, GP and rheumatology staff. In addition, at routine reviews the patient's disease is often quiet and little or no intervention is required—patients may be seen when they do not require help but do not have easy, rapid access to support at times of need.

Faulkner and Frankel [3] suggested a variety of ways of optimizing out-patient services (e.g. increasing discharge rates, lengthening the interval between routine follow-up visits), but when implemented locally these had minimal impact on an unwieldy system. Furthermore, they do not address the fundamental belief underpinning the traditional system—that RA patients require regular hospital-initiated review throughout their lifelong illness.

General practitioners (GPs) do not wish to manage their RA patients alone and lose the expertise of the rheumatologist and specialist multidisciplinary team, but the traditional system is not optimal [4]. A more flexible system of review might reduce inappropriate follow-up appointments, improve rapid access to specialist advice and release resources to further improve service provision. If the patient is empowered to initiate specialist review, then feelings of enhanced self-efficacy and control may improve the clinical and psychological outcome. Some rheumatologists, either by choice or necessity, lengthen the interval between routine follow-up visits such that patients are infrequently reviewed. There is little hard evidence about whether it is clinically safe to reduce routine specialist input; therefore, this study includes a ‘safety net’ to monitor the clinical progress of patients receiving both traditional, planned reviews and no routine reviews but rapid access (shared care).

Controlled studies of shared care in other diseases have been performed [5], but most did not incorporate patient-initiated access to hospital review. Studies in RA have concentrated on monitoring for adverse effects of slow-acting anti-rheumatic drugs (SAARDs) [6]. Mowat et al. [7] randomized 72 RA patients to GP, consultant or specialist occupational therapist follow-up and found that all three systems were equally effective, but they did not use patient-initiated review.

This study used a randomized controlled trial to compare traditional, routine rheumatologist-initiated hospital care for patients with established RA with a patient-initiated shared care system in which there were no routine hospital reviews, but hospital review was initiated by patients and GPs. The hypotheses addressed are that the patient-initiated shared care system will show an improvement in clinical and psychological outcome, a reduction in the overall use of healthcare resources, and greater satisfaction with care by patients and GPs.


    Method
 Top
 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Three hundred and two consecutive patients attending the rheumatology out-patients department of the Bristol Royal Infirmary and who had established RA according to international criteria [8] were invited to take part, the study having received approval from the United Bristol Health Care Trust Research Ethics Committee. All RA patients were invited, with no exclusion criteria. After receiving information on both arms of the study, patients who gave consent were randomized to either shared care with the GP [no routine hospital review but rapid access on request; the shared care group (SCG)] or traditional hospital care [regular planned review; the control group] for 2 yr. SCG patients were cared for by their GPs, who were provided with management guidelines based on previous publications [9, 10]. [Responsibility for monitoring SAARDs is held routinely by GPs in this locality.]

Access to rheumatologist, occupational therapist or physiotherapist review
SCG patients or GPs requested review by any team member through the nurse-run telephone helpline, whereby general advice or assistance was also given. Fortnightly ring-fenced rheumatology clinics gave a maximum wait of 10 working days for review. Control patients had a traditional medical review ordered routinely every 3–4 months or according to standard practice. Requests for medical review of control patients ahead of schedule were dealt with according to normal practice, GP requests being assessed by a rheumatologist (usually not the study rheumatologist), who decided on the timing of the review. In the rare event of an emergency (e.g. septic arthritis), all patients would be dealt with immediately. Control patients had access to the occupational therapist (OT) and physiotherapist (PT) via the traditional route of GP request, rheumatologist appointment and referral to OT or PT waiting lists. At medical, OT or PT hospital reviews, all patients were managed according to need and further follow-up was given as clinically indicated, SCG patients eventually returning to patient-initiated review and controls to routine review.


    Outcome measures
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 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Clinical and psychological
To assess the overall state of RA, evaluations of plasma viscosity, C-reactive protein, haemoglobin, hand X-rays [11], grip strength, range of movement at the knee and elbow, and articular index [12] were made at 0 and 24 months. Clinical and psychological status was measured at 3-month intervals with a questionnaire that covered pain and disease activity [10-cm visual analogue scale (VAS)], disability (Health Assessment Questionnaire) [13, 14], days lost from work, helplessness (Arthritis Helplessness Index) [15], anxiety and depression (Hospital Anxiety and Depression Scale) [16], self-efficacy [17] and changes in medication.

Satisfaction
Satisfaction with and confidence in the system of care were recorded using a 10 cm VAS every 3 months. At 24 months, GPs were asked the same question and GPs of SCG patients were also asked whether they wished their patients to continue in the shared care system.

Resources
Visits to health professionals about arthritis (including the use of hospital transport) were recorded in patients’ diary cards. The costs of all hospital visits were calculated using local NHS Trust figures while GP, district and practice nurse visits and hospital transport journeys were costed using published unit cost data [18].

Safety net monitoring
A safety net, using the 3-monthly questionnaires (assessed blind), was set up to monitor all patients’ clinical status as half were no longer receiving reviews. Based on clinical experience, an increase of >=20% in pain, disease activity or disability was deemed a safety net failure. Shared care patients who failed the safety net were telephoned to check on their well-being and encouraged to see their GP, while those who failed on two consecutive occasions were encouraged to come for rheumatologist review. Hospital records of control patients who failed were checked to ensure they were not lost to follow-up. Case notes were reviewed at 24 months by an independent assessor, who documented RA complications using a predetermined checklist.

Sample size and statistics
In order to show a 12% change in pain using a 10 cm VAS, at 95% power, the study required a sample size of 186 patients [19]. Analysis was performed on all those who completed four or more of the nine data sets. Changes in parameters between the two groups of patients at intermediate time points and over 2 yr were compared using Student's t-test or the Mann–Whitney U-test (non-parametric data).


    Results
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 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Of 302 subjects invited to participate, 209 (69.2%) agreed. Patients who declined were older, had a higher mean articular index and were more disabled (Table 1Go). No patient declined to take part after randomization, although the GP of one SCG patient declined on grounds of comorbidity (but did enter other patients). Of the 208 entered, 26 (12.5%) withdrew or were withdrawn because of non-compliance with safety monitoring (SCG, 11; control group, 15); nine patients died (SCG, 5; control group, 4) but their data are included where available (n = 182; SCG, 93; control group, 89) (Fig. 1Go).


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TABLE 1. Demographic data

 


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FIG. 1. Patient flow through the study.

 
At entry patients showed moderate inflammatory activity, pain and disability and appeared representative of a hospital-based RA population (Table 1Go). There were no significant differences between the two groups, other than for grip strength (P < 0.05).


    Clinical and psychological benefit
 Top
 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
The majority of the 3-monthly questionnaires were returned (SCG, 88.8%; control group, 88.9%). There was a significant difference between the groups for pain at 24 months (SCG, 3.9 cm, control group 4.8 cm; P < 0.05) (Fig. 2Go), and change in pain over months 0–24 was significantly less in shared care patients (SCG, +0.4; control group, +1.6 cm; P < 0.01). There was a trend in favour of the SCG patients for changes in patient opinion of disease activity over 24 months (SCG, –8%; control group, +17%; not significant). Mean disability fluctuated very little over the 2 yr (SCG improved by 8%, control group deteriorated by 4%) and there were no statistically significant differences for change in mean disability over 24 months (Fig. 3Go).



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FIG. 2. Pain scores: comparison of mean scores with 95% confidence interval.

 


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FIG. 3. Disability scores: comparison of mean scores with 95% CI. (HAQ, Health Assessment Questionnaire.)

 
There were significant differences in self-efficacy for function at 6, 15, 18 and 21 months (SCG stronger, all P < 0.05; 24 months, P < 0.053) (Fig. 4Go). Although again there were trends in favour of the shared care group for changes in psychological status over 24 months (anxiety and depression increased by 3 and 4%, respectively, in SCG and by 11 and 14% in the control group), there were no significant differences between the groups for changes in psychological status.



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FIG. 4. Self-efficacy (SE) scores for function: comparison of mean scores with 95% CI.

 
The frequency of safety-net failures was not significantly different between the groups (SCG, 26.5%; control group, 28.9%), although more control patients failed the safety net on a second review 3 months after failing a first review (Table 2Go). Of the shared care patients who failed, the majority had already sought advice or did not require it.


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TABLE 2. Safety-net data

 
The proportions of patients treated with non-steroidal anti-inflammatory drugs (NSAIDs), SAARDs and glucocorticoids were equal in the groups at entry and remained relatively constant throughout the 2 yr (Table 3Go). Assuming that NSAIDs might have been changed at either a GP or a hospital consultant visit, there was one NSAID prescription change for every nine SCG doctor visits (i.e. an alteration ratio of 1:9, vs 1:18 for the control group) and, assuming only rheumatologists were likely to alter SAARDs, a SAARD alteration ratio of 1:6 SCG consultant reviews (control group, 1:10).


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TABLE 3. Percentage of patients receiving medication

 
At the 24-month case note review, four instances of RA complications were documented for SCG patients (one instance each of respiratory and gastrointestinal complications and two instances of nodules) while controls had 10 instances (three instances of vasculitis, three of drug reactions, two of gastrointestinal complications, one each of renal and nodules). At entry, Larsen scores [12] for radiographs were 43.7 (S.D 19.1) for SCG and 48.1 (S.D. 26) for the control group; at exit they were 48.4 (S.D. 20.4) for SCG and 50.1 (S.D. 27.3) for the control group (no significant difference).


    Resource use
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 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Shared care appointments were given within a mean of 4.9 working days (range 0–18 days). In the eight cases where the delay was >10 working days, this coincided with staff or bank holidays and a consequent clinic postponement. There was a 43.8% difference in consultant reviews [SCG requested 262 appointments, with a mean of 2.82; controls were given 466 reviews, with a mean of 5.24; P < 0.001), but no significant differences in visits to other professionals (Table 4Go). The overall cost for managing the 93 SCG patients was £38 635 (£208 per patient per year) vs £55 597 for the 89 control patients (£313 per patient per year). This represents a saving for the SCG of 30.5% overall, or, when the difference in group sizes are taken into account, 33.5% (P < 0.001). The helpline received a mean of 2.4 calls per week, which in most units would be managed by existing nurse specialists. However, even if 10% of a nurse's salary (£2000) was included to run the helpline, there was still a 26.8% saving (£229 per SCG patient per year; £313 per control patient per year).


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TABLE 4. Number of consultations and their costings

 
To test the robustness of these costings, a sensitivity analysis was undertaken, using various values for the two main contributing factors: hospital consultant visits and GP visits (Fig. 5Go). Even at unrealistically low costings for hospital consultant visits (£50) and inappropriately high costings for GP consultations (£55), i.e. a situation in which consultations in primary care are more expensive than consultations in secondary care, the overall cost saving for the study was 14%.



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FIG. 5. Sensitivity analysis of various costings for consultant and GP visits.

 


    Satisfaction
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 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
Satisfaction and confidence levels were high for both systems and not significantly different at entry (satisfaction: SCG, 8.35 cm; controls, 8.29 cm; confidence: SCG, 8.48 cm; controls, 8.17 cm). However, satisfaction was significantly higher in the SCG when patients were asked to look back over the 2 yr (SCG, 8.56 cm; controls, 7.89 cm; P < 0.05). Confidence in the system to care for them was significantly higher in SCG, in six of the eight cross-sectional assessments (Fig. 6Go). At 24 months, 82 SCG patients were invited to continue with shared care (five died, four had other comorbidities, one was discharged, one was non-compliant with safety questionnaires, and one was diagnosed with systemic lupus erythematosus) and all accepted. At 24 months there was no significant difference between the groups for GP satisfaction and confidence (satisfaction: SCG, 7.66 cm; controls, 7.39 cm; confidence: SCG, 7.46 cm; controls, 7.65 cm). Of the 70% of SCG GPs who answered the question, 80% wished their patients to continue in the shared care system, 8% preferred them to revert to traditional care and 12% expressed no preference.



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FIG. 6. Confidence in the system: comparison of mean scores with 95% confidence interval.

 


    Discussion
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 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 
This randomized controlled trial compared a patient-initiated system of shared care including open access to the hospital specialist team with the traditional system of routine consultant review in RA. Results suggest no clinical deterioration and some clinical benefit in the shared care group, which was achieved at a 33.5% resource saving and incorporated greater satisfaction and confidence in the system.

The groups were similar in all respects at entry, and it is therefore unlikely that differences in disease status could have influenced overall findings. Patients who declined to take part were significantly older and more affected by their arthritis. It may be that the decliners were anxious about making a major change in a well-established care system or were uncertain about initiating consultant review themselves, although no data are available on this. Shared care might need to be targeted at certain patient groups.

The increased ratio of prescription changes to doctor visits implies that shared care hospital and GP consultations were more appropriate (i.e. that treatment needed to be changed), but these results must be interpreted with caution as specific data on the content of out-patient visits was not recorded and a visit may have been appropriate without a change in medication. As clinical data were collected on a calendar basis (unrelated to clinic appointments), it is not possible to relate clinical status to any specific hospital visit. A further prospective study is under way to examine the appropriateness of both routine and requested visits.

The number of GP visits was increased in the shared care patients, although this was not statistically significant. However, although extra GP visits were inherent in the study design, no GP declined to participate and most wished patients to continue at the end.

Consultant availability had to be protected during this research study as it was not known how many patients would request appointments, nor how frequently. The reported 33.5% saving does not take account of the ring-fenced shared care appointments that were not utilized by patients, leaving some consultant appointments unused. Clearly the saving is only achieved if fewer staff are employed or more patients cared for. However, the data now allow us to estimate that, by utilizing the unfilled consultant appointment slots, approximately 50% more patients could be accommodated in this shared care system without extra medical input. If the system were to be scaled up to incorporate the majority of a consultant's RA patients (perhaps 8-fold), then more than one rapid access clinic would be required each fortnight, which would increase the number of clinics available to patients. The study implies that involving patients in their management reduces the overall need for medical consultations (GP plus hospital consultant visits) without increasing either physiotherapy or occupational therapy input, although there was additional nursing support via the nurse-led helpline.

The method of safety-net monitoring (20% deterioration in disease designated as failure) meant that patients who deteriorated slowly (e.g. by 10% every 3 months) or patients who commenced the study with a VAS pain score already above 80% of the maximum did not trigger the review system. However, no patient deteriorated significantly over 2 yr. Furthermore, the failure rate was similar in the two groups, indicating that these somewhat arbitrary cut-off points were compatible with the day-to-day variation seen in patients under regular review and, indeed, may even have been too sensitive.

Over half the shared care patients who failed the safety net had already requested medical help and the nurse telephone calls resulted in only a quarter seeking help. This indicates that patients are able to recognize difficulties and to access help appropriately when given the responsibility and mechanism to do so.

The lead rheumatologist in the study could not be blind to the group assignment of the patients, which may be considered a weakness in the study design. However, had different clinicians managed the two groups, this would have introduced another variable (personal approaches to patient management). Employing a single approach to management enables the effect of service delivery/access to be assessed.

The study raises two main questions about generalizability. First, the study was confined to a single teaching hospital. The patients are likely to be representative of the average rheumatologist's RA caseload, as all consecutive patients in an RA follow-up clinic were invited, with no exclusion criteria. Unlike district general hospitals (DGH) this teaching hospital has a number of specialist registrars but (as yet) no nurse practitioner or nurse-led clinics. However, the work was carried out by a single consultant and could therefore reasonably be reproduced in a DGH. Secondly, the system has been investigated for only 2 yr in a chronic disease. However, the patient cohorts and systems have been maintained beyond this and data collection is currently under way for years 5 and 6, allowing long-term analysis.

This study raises further issues. For example, can those patients who would benefit most from this system be identified? Should patients be offered an education programme on self-management as a prerequisite for entering the new system? Could or should 3-monthly postal reviews be replaced by (for example) a biennial health professional or medical review? How appropriate is the timing of the traditional consultant reviews compared with shared care reviews? Are there missed treatment opportunities (e.g. for OT intervention) when patients are not reviewed regularly? These points will be also be addressed in the extension of the study to 6 yr.

These results challenge the traditional view that chronically ill patients (in this instance those with RA) require regular routine hospital review. It has provided evidence that, in the short term (2 yr), a patient-initiated shared care system can be clinically and economically effective for established RA patients, is acceptable to GPs and patients and is worthy of serious consideration.


    Acknowledgments
 
The study was funded by an NHS Research and Development National Programme Grant. The authors would like to thank the advisory group for their assistance: Professor D. Sharpe (University of Bristol Division of Primary Health Care), Dr I. Hine (GP) and Mrs A Hopwood (Rheumatology Clinical Manager, Bristol Royal Infirmary). We would also like to thank the clinical team for supporting the study—Mrs M. Cottle (PT), Ms G. Ludlum, Ms R. Squires and Ms L. Blenkiron (OTs), Mrs S. Tippler (Nurse), Ms P. Kearsey (NHS Secretary)—and clinic staff Mrs W. Harrison and Mrs M. Bullock, and the patients who participated.


    Notes
 
Correspondence to: S. Hewlett, Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW, UK. Back


    References
 Top
 Abstract
 Introduction
 Method
 Outcome measures
 Results
 Clinical and psychological...
 Resource use
 Satisfaction
 Discussion
 References
 

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Submitted 29 September 1999; revised version accepted 3 March 2000.