Patient initiated outpatient follow up in rheumatoid arthritis: six ye
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《英国医生杂志》
1 University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW, 2 Faculty of Health and Social Care, University of the West of England, Bristol BS16 1DD, 3 University of Bristol Institute of Child Health, UBHT Education Centre, Bristol Royal Infirmary, Bristol, 4 Air Balloon Surgery, Bristol BS5 7PD
Correspondence to: S Hewlett Sarah.Hewlett@bristol.ac.uk
Abstract
Patients with chronic inflammatory diseases such as asthma, inflammatory bowel disease, and rheumatoid arthritis are traditionally managed by regular hospital reviews initiated by a physician. Prebooked reviews may occur when the patient is well and little action is taken.1 The volume of appointments leads to an unwieldy system struggling to respond rapidly to requests for help in the face of fluctuating disease.
General practitioners believe that for such patients rapid specialist access in times of need is more important than routine hospital follow up,2 3 but hospital specialists may be reluctant to relinquish routine reviews.4 A study exploring the use of other professionals for routine reviews in asthma suggested that reviews had simply been moved into primary care,5 while a randomised controlled trial in rheumatoid arthritis showed other professionals could be effective.6
Lengthening periods between reviews or increasing discharge rates7 make some impact but do not address the fundamental belief that lifelong review is necessary and should be medically driven. Patients with chronic disease manage their condition every day and initiate appointments with their general practitioners when they are unwell, therefore hospital reviews initiated by the patient could be considered. This might reduce unnecessary reviews, increase capacity for rapid response to disease flares, and empower patients.8 Randomised controlled trials of such "open access" in inflammatory bowel disease found no clinical detriment but no saving in resources,9 while patients with ulcerative colitis managed their condition more rapidly in a crisis and requested fewer reviews.10
Rheumatoid arthritis is a chronic disease with unpredictable periods of inflammatory activity, culminating in disability, bone erosion, reduced range of movement, and fluctuating pain and psychological distress.11 Patients have lifelong hospital reviews, initiated by rheumatologists every three to six months, which form about three quarters of a rheumatologist's workload.12 Rheumatoid arthritis is therefore an appropriate disease to test a new system of access to review in chronic illnesses that use considerable NHS resources.13 14 A two year randomised controlled trial of the two types of review (initiated by patient or by rheumatologist) found that direct access was safe, cost effective, and appreciated,15 and findings were maintained at four years.16 To date, only short term effects of alternative access systems have been studied, but patients with chronic disease who do not have routine reviews may have long term physical consequences (they may not notice gradual physical changes that will go untreated) and therefore long term studies are required.
We extended the two year trial15 to six years to see whether such patients show an improvement in clinical and psychological outcome, reduce their overall use of healthcare resources, and have greater satisfaction with care compared with patients receiving traditional review initiated by a rheumatologist.
Methods
Of 302 patients invited to participate, 209 agreed. Patients who declined were significantly older than those who participated (median 69 years v 58 years, P < 0.05) and more disabled (median score on health assessment questionnaire 2.2 v 1.5, P < 0.05. At six years 120 patients remained for analysis (68 (65%) in direct access group and 52 (50%) in control group, P = 0.04) (fig 1). Thirty patients died (12 in the direct access group and 18 in the control group). Using the last observation, we found no significant difference or strong directional trend for clinical or psychological outcomes between the groups for those who died. Because those who died were significantly older at baseline (median difference 10 years) and many outcomes were related to age, we excluded these patients from further comparison. The 59 surviving patients who did not complete the study (direct access 25, control 34) were similar at baseline to those who completed the study, differing only for longer duration of disease and less range of movement (table 1).
Fig 1 Study flowchart
Table 1 Baseline characteristics (excluding deaths). Figures are medians (interquartile range) unless stated otherwise
The 120 patients (direct access 68, control 52) who formed the final dataset differed at baseline only for stronger grip strength in the direct access group (table 1). The Townsend deprivation score25 was not significantly different between groups (median score -0.1, (interquartile range -2.4 to 3.3) v -0.2 (-1.8 to 3.1), respectively).
Clinical outcome at six years—There were no significant differences between the groups in median change scores for clinical outcome (table 2), except for range of movement in the elbow, where the direct access group deteriorated less. Quality of life at four and six years was not significantly different between the groups, except for a greater deterioration in physical function in the direct access group (SF-36: direct access -5, control 0, P = 0.04, see table A on bmj.com), which was not shown in the disability measure specific for arthritis (health assessment questionnaire, table 2). Complications (respiratory or renal involvement, vasculitis, anaemia, drug reactions, gastrointestinal problems) and need for joint surgery were not significantly different between the groups (4 v 5 patients over baseline to two years and 16 v 17 patients over four to six years, P = 0.36).
Table 2 Median changes in outcome from baseline to six years
Psychological status and satisfaction with the system—There were no significant differences between the groups over the six years for median change in any of the psychological variables (table 2). There were no differences between the groups for satisfaction with and confidence in the traditional system of care at baseline (table 1), but both were significantly higher for the direct access system thereafter (fig 2), and at six years both had decreased by 10% in the control group (table 2). General practitioners' satisfaction and confidence in the system at six years was higher for direct access (satisfaction: 8.4 (7.5-9.6) v 7.5 (5.5-8.57), P = 0.005; confidence: 8.4 (7.25-9.45) v 8.0 (5.72-8.7), P = 0.04). Clinical and psychological results were replicated in analysis according to area under the curve (see table B on bmj.com).
Fig 2 Patients' confidence and satisfaction in the system
Appointments with rheumatologist and general practitioners—Direct access patients had 38% fewer hospital reviews over six years (median 8 (5-13) v 13 (11-17), P < 0.0001) with 34% of direct access patients receiving more than 10 hospital reviews compared with 85% of control patients (fig 3). Fourteen direct access patients (21%) did not request an appointment during the first two years, 19 (28%) during years two to four, and 14 (21%) during years four to six. This includes three patients who did not request any appointments over the six years. During years four to six we recorded the intervals between patients' requests and subsequent appointments. These were not different between groups (direct access requested 166 appointments, median delay 6 days, 3-9; controls requested 10 additional appointments, median 8 days, 4.5-11.25). The number of visits to the general practitioner for consultations about arthritis was not significantly different between the groups over the six years (median 8, 3-20; v 9.5, 3-17).
Fig 3 Hospital rheumatologist appointments over six years
Discussion
Hehir M, Hewlett S, Mitchell K, Kirwan J, Memel D, Pollock J, et al. What happens in RA outpatient clinics? Rheumatology 2001;40: S146.
Dickson DJ. What do general practitioners expect from rheumatology clinics? Br J Rheumatol 1996;35: 920.
Reeve H, Baxter K, Newton P, Burkey Y, Black M, Roland M. Long-term follow-up in outpatient clinics. 1: The view from general practice. Fam Pract 1997;14: 24-8.
Schulpen GJC, Vierhout SPM, Van Der Heijde DM, Landewe RB, Winkens RAG, Winkens AMK, et al. Patients at the outpatient rheumatology clinic: do they really need to be there? Eur J Intern Med 2003;14: 158-61.
Damme R van, Drummond N, Beattie J, Douglas G. Integrated care of patients with asthma: views of general practitioners. Br J Gen Pract 1994;44: 9-13.
Mowat AG, Nichols PJ, Hollings EM, Haworth RJ, Aitken LC. A comparison of follow-up regimens in RA. Ann Rheum Dis 1980;39: 12-7.
Faulkner A, Frankel S. Evaluation of delivery and use of outpatient services. Bristol: Health Care Evaluation Unit, University of Bristol, 1993: 48-54.
Department of Health. The expert patient: a new approach to chronic disease management for the 21st century. London: Department of Health, 2001.
Williams J, Cheung W, Russell I, Cohen D, Longo M, Lervy B. Open access follow-up for inflammatory bowel disease: pragmatic randomised trial and cost effectiveness study. BMJ 2000;320: 544-8.
Robinson A, Thompson D, Wilkin D, Roberts C. Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial. Lancet 2001;358: 976-81.
Pincus T, Callahan L. The side effects of rheumatoid arthritis: destruction, disability and early mortality. Br J Rheumatol 1993;32: 28-37
Kirwan JR, Snow S. Which patients see a rheumatologist? Br J Rheumatol 1991;30: 285-7.
Kirwan JR for the former South West Regional Advisory Committee for rheumatology. Rheumatology outpatient workload increases inexorably. Br J Rheumatol 1997;36: 481-6.
Symmons D, Bankhead C. Health care needs assessment for musculoskeletal diseases: the first step—estimating the number of incident and prevalent cases. Chesterfield: Arthritis Research Campaign, 2002.
Hewlett S, Kirwan JR, Mitchell K, Hogg J, Korendovych E, Paine T. Patient-initiated hospital follow-up for rheumatoid arthritis. Rheumatology 2000;39: 990-7.
Kirwan JR, Mitchell K, Hewlett S, Hehir M, Pollock J, Memel D, et al. Clinical and psychological outcome from a randomised controlled trial of patient-initiated direct access hospital follow-up for rheumatoid arthritis extended to 4 years. Rheumatology 2002;42: 422-6.
Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arth Rheum 1980;23: 137-45.
Ware J, Sherbourne C. The MOS 36 item short form health survey (SF-36). Med Care 1992;30: 473-83.
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67: 361-70.
Stein MJ, Wallston KA, Nicassio PM. Factor structure of the arthritis helplessness index. J Rheumatol 1988;15: 427-32.
Lorig K, Chastain R, Ung E, Shoor S, Holman H. Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arth Rheum 1989;32: 37-44.
Bellamy N. Standardised procedures for outcome measurement and parameters for calculating sample size for anti-rheumatic drugs. In: Bellamy N. Musculoskeletal clinical metrology. London: Klewer, 1993.
Larsen A, Dale K, Eek M. Radiographic evaluation of rheumatoid arthritis and related conditions by standard reference films. Acta Radiol (Diagn) 1977;18: 48-91.
Kirwan JR. Using the Larsen index to assess radiographic progression in rheumatoid arthritis. J Rheumatol 2000;27: 264-8.
Dolan SA, Jarman B, Bajekal M, Davies PM, Hart D. Measuring disadvantage: changes in the underprivileged area: Townsend and Carstairs scores 1981-1991. J Epidemiol Community Health 1995;49: S30-3.
Memel DS, Somerset M. General practitioner and specialist care: the perceptions of people with rheumatoid arthritis. Primary Health Care Research and Development 2003;4: 29-37.(Sarah Hewlett, senior lecturer1, John Ki)
Correspondence to: S Hewlett Sarah.Hewlett@bristol.ac.uk
Abstract
Patients with chronic inflammatory diseases such as asthma, inflammatory bowel disease, and rheumatoid arthritis are traditionally managed by regular hospital reviews initiated by a physician. Prebooked reviews may occur when the patient is well and little action is taken.1 The volume of appointments leads to an unwieldy system struggling to respond rapidly to requests for help in the face of fluctuating disease.
General practitioners believe that for such patients rapid specialist access in times of need is more important than routine hospital follow up,2 3 but hospital specialists may be reluctant to relinquish routine reviews.4 A study exploring the use of other professionals for routine reviews in asthma suggested that reviews had simply been moved into primary care,5 while a randomised controlled trial in rheumatoid arthritis showed other professionals could be effective.6
Lengthening periods between reviews or increasing discharge rates7 make some impact but do not address the fundamental belief that lifelong review is necessary and should be medically driven. Patients with chronic disease manage their condition every day and initiate appointments with their general practitioners when they are unwell, therefore hospital reviews initiated by the patient could be considered. This might reduce unnecessary reviews, increase capacity for rapid response to disease flares, and empower patients.8 Randomised controlled trials of such "open access" in inflammatory bowel disease found no clinical detriment but no saving in resources,9 while patients with ulcerative colitis managed their condition more rapidly in a crisis and requested fewer reviews.10
Rheumatoid arthritis is a chronic disease with unpredictable periods of inflammatory activity, culminating in disability, bone erosion, reduced range of movement, and fluctuating pain and psychological distress.11 Patients have lifelong hospital reviews, initiated by rheumatologists every three to six months, which form about three quarters of a rheumatologist's workload.12 Rheumatoid arthritis is therefore an appropriate disease to test a new system of access to review in chronic illnesses that use considerable NHS resources.13 14 A two year randomised controlled trial of the two types of review (initiated by patient or by rheumatologist) found that direct access was safe, cost effective, and appreciated,15 and findings were maintained at four years.16 To date, only short term effects of alternative access systems have been studied, but patients with chronic disease who do not have routine reviews may have long term physical consequences (they may not notice gradual physical changes that will go untreated) and therefore long term studies are required.
We extended the two year trial15 to six years to see whether such patients show an improvement in clinical and psychological outcome, reduce their overall use of healthcare resources, and have greater satisfaction with care compared with patients receiving traditional review initiated by a rheumatologist.
Methods
Of 302 patients invited to participate, 209 agreed. Patients who declined were significantly older than those who participated (median 69 years v 58 years, P < 0.05) and more disabled (median score on health assessment questionnaire 2.2 v 1.5, P < 0.05. At six years 120 patients remained for analysis (68 (65%) in direct access group and 52 (50%) in control group, P = 0.04) (fig 1). Thirty patients died (12 in the direct access group and 18 in the control group). Using the last observation, we found no significant difference or strong directional trend for clinical or psychological outcomes between the groups for those who died. Because those who died were significantly older at baseline (median difference 10 years) and many outcomes were related to age, we excluded these patients from further comparison. The 59 surviving patients who did not complete the study (direct access 25, control 34) were similar at baseline to those who completed the study, differing only for longer duration of disease and less range of movement (table 1).
Fig 1 Study flowchart
Table 1 Baseline characteristics (excluding deaths). Figures are medians (interquartile range) unless stated otherwise
The 120 patients (direct access 68, control 52) who formed the final dataset differed at baseline only for stronger grip strength in the direct access group (table 1). The Townsend deprivation score25 was not significantly different between groups (median score -0.1, (interquartile range -2.4 to 3.3) v -0.2 (-1.8 to 3.1), respectively).
Clinical outcome at six years—There were no significant differences between the groups in median change scores for clinical outcome (table 2), except for range of movement in the elbow, where the direct access group deteriorated less. Quality of life at four and six years was not significantly different between the groups, except for a greater deterioration in physical function in the direct access group (SF-36: direct access -5, control 0, P = 0.04, see table A on bmj.com), which was not shown in the disability measure specific for arthritis (health assessment questionnaire, table 2). Complications (respiratory or renal involvement, vasculitis, anaemia, drug reactions, gastrointestinal problems) and need for joint surgery were not significantly different between the groups (4 v 5 patients over baseline to two years and 16 v 17 patients over four to six years, P = 0.36).
Table 2 Median changes in outcome from baseline to six years
Psychological status and satisfaction with the system—There were no significant differences between the groups over the six years for median change in any of the psychological variables (table 2). There were no differences between the groups for satisfaction with and confidence in the traditional system of care at baseline (table 1), but both were significantly higher for the direct access system thereafter (fig 2), and at six years both had decreased by 10% in the control group (table 2). General practitioners' satisfaction and confidence in the system at six years was higher for direct access (satisfaction: 8.4 (7.5-9.6) v 7.5 (5.5-8.57), P = 0.005; confidence: 8.4 (7.25-9.45) v 8.0 (5.72-8.7), P = 0.04). Clinical and psychological results were replicated in analysis according to area under the curve (see table B on bmj.com).
Fig 2 Patients' confidence and satisfaction in the system
Appointments with rheumatologist and general practitioners—Direct access patients had 38% fewer hospital reviews over six years (median 8 (5-13) v 13 (11-17), P < 0.0001) with 34% of direct access patients receiving more than 10 hospital reviews compared with 85% of control patients (fig 3). Fourteen direct access patients (21%) did not request an appointment during the first two years, 19 (28%) during years two to four, and 14 (21%) during years four to six. This includes three patients who did not request any appointments over the six years. During years four to six we recorded the intervals between patients' requests and subsequent appointments. These were not different between groups (direct access requested 166 appointments, median delay 6 days, 3-9; controls requested 10 additional appointments, median 8 days, 4.5-11.25). The number of visits to the general practitioner for consultations about arthritis was not significantly different between the groups over the six years (median 8, 3-20; v 9.5, 3-17).
Fig 3 Hospital rheumatologist appointments over six years
Discussion
Hehir M, Hewlett S, Mitchell K, Kirwan J, Memel D, Pollock J, et al. What happens in RA outpatient clinics? Rheumatology 2001;40: S146.
Dickson DJ. What do general practitioners expect from rheumatology clinics? Br J Rheumatol 1996;35: 920.
Reeve H, Baxter K, Newton P, Burkey Y, Black M, Roland M. Long-term follow-up in outpatient clinics. 1: The view from general practice. Fam Pract 1997;14: 24-8.
Schulpen GJC, Vierhout SPM, Van Der Heijde DM, Landewe RB, Winkens RAG, Winkens AMK, et al. Patients at the outpatient rheumatology clinic: do they really need to be there? Eur J Intern Med 2003;14: 158-61.
Damme R van, Drummond N, Beattie J, Douglas G. Integrated care of patients with asthma: views of general practitioners. Br J Gen Pract 1994;44: 9-13.
Mowat AG, Nichols PJ, Hollings EM, Haworth RJ, Aitken LC. A comparison of follow-up regimens in RA. Ann Rheum Dis 1980;39: 12-7.
Faulkner A, Frankel S. Evaluation of delivery and use of outpatient services. Bristol: Health Care Evaluation Unit, University of Bristol, 1993: 48-54.
Department of Health. The expert patient: a new approach to chronic disease management for the 21st century. London: Department of Health, 2001.
Williams J, Cheung W, Russell I, Cohen D, Longo M, Lervy B. Open access follow-up for inflammatory bowel disease: pragmatic randomised trial and cost effectiveness study. BMJ 2000;320: 544-8.
Robinson A, Thompson D, Wilkin D, Roberts C. Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial. Lancet 2001;358: 976-81.
Pincus T, Callahan L. The side effects of rheumatoid arthritis: destruction, disability and early mortality. Br J Rheumatol 1993;32: 28-37
Kirwan JR, Snow S. Which patients see a rheumatologist? Br J Rheumatol 1991;30: 285-7.
Kirwan JR for the former South West Regional Advisory Committee for rheumatology. Rheumatology outpatient workload increases inexorably. Br J Rheumatol 1997;36: 481-6.
Symmons D, Bankhead C. Health care needs assessment for musculoskeletal diseases: the first step—estimating the number of incident and prevalent cases. Chesterfield: Arthritis Research Campaign, 2002.
Hewlett S, Kirwan JR, Mitchell K, Hogg J, Korendovych E, Paine T. Patient-initiated hospital follow-up for rheumatoid arthritis. Rheumatology 2000;39: 990-7.
Kirwan JR, Mitchell K, Hewlett S, Hehir M, Pollock J, Memel D, et al. Clinical and psychological outcome from a randomised controlled trial of patient-initiated direct access hospital follow-up for rheumatoid arthritis extended to 4 years. Rheumatology 2002;42: 422-6.
Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arth Rheum 1980;23: 137-45.
Ware J, Sherbourne C. The MOS 36 item short form health survey (SF-36). Med Care 1992;30: 473-83.
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67: 361-70.
Stein MJ, Wallston KA, Nicassio PM. Factor structure of the arthritis helplessness index. J Rheumatol 1988;15: 427-32.
Lorig K, Chastain R, Ung E, Shoor S, Holman H. Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arth Rheum 1989;32: 37-44.
Bellamy N. Standardised procedures for outcome measurement and parameters for calculating sample size for anti-rheumatic drugs. In: Bellamy N. Musculoskeletal clinical metrology. London: Klewer, 1993.
Larsen A, Dale K, Eek M. Radiographic evaluation of rheumatoid arthritis and related conditions by standard reference films. Acta Radiol (Diagn) 1977;18: 48-91.
Kirwan JR. Using the Larsen index to assess radiographic progression in rheumatoid arthritis. J Rheumatol 2000;27: 264-8.
Dolan SA, Jarman B, Bajekal M, Davies PM, Hart D. Measuring disadvantage: changes in the underprivileged area: Townsend and Carstairs scores 1981-1991. J Epidemiol Community Health 1995;49: S30-3.
Memel DS, Somerset M. General practitioner and specialist care: the perceptions of people with rheumatoid arthritis. Primary Health Care Research and Development 2003;4: 29-37.(Sarah Hewlett, senior lecturer1, John Ki)