Rheumatoid Arthritis: Hehir M

Hewlett S, Hehir M, Kirwan JR. · University of the West of England, Bristol, UK. · Arthritis Rheum. · Pubmed #17394228 links to  free full text

Abstract: OBJECTIVE: Fatigue is an important outcome for patients with rheumatoid arthritis (RA). The purpose of this study was to identify the scales being used to measure RA fatigue, and to systematically examine the evidence for their validation. METHODS: Articles measuring fatigue in RA were sought using the terms RA and fatigue, and RA and tiredness, plus scale, questionnaire, inventory, and checklist. Index articles reporting identifiable RA fatigue data were examined for the fatigue scale used. Index and validation articles for each scale were reviewed for evidence supporting scale validation to measure RA fatigue using a standardized checklist of content, face, criterion, and construct validity, reliability, and sensitivity to change. RESULTS: A total of 61 index articles used 23 different fatigue scales to measure RA fatigue on 71 occasions. Seventeen scales had either no data on validation in RA or limited evidence. Reasonable evidence of validation was identified for 6 scales, each also having some evidence of sensitivity to change: ordinal scales, the Short Form 36 vitality subscale, the Functional Assessment of Chronic Illness Therapy Fatigue Scale, visual analog scales (VAS), the Profile of Mood States, and the RA-specific Multidimensional Assessment of Fatigue scale (MAF). However, the 4 generic scales would benefit from further validation in patients with RA, the VAS requires standardization, and the MAF would benefit from further sensitivity data. CONCLUSION: It was possible to identify evidence of reasonable validation for 6 of 23 scales being used to measure RA fatigue. Researchers and clinicians should select scales to measure RA fatigue carefully.

Hewlett S, Kirwan J, Pollock J, Mitchell K, Hehir M, Blair PS, Memel D, Perry MG. · University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW. · BMJ. · Pubmed #15546895 links to  free full text

Abstract: OBJECTIVES: To determine whether direct access to hospital review initiated by patients with rheumatoid arthritis would result in improved clinical and psychological outcome, reduced overall use of healthcare resources, and greater satisfaction with care than seen in patients receiving regular review initiated by a rheumatologist. DESIGN: Two year randomised controlled trial extended to six years. SETTING: Rheumatology outpatient department in teaching hospital. PARTICIPANTS: 209 consecutive patients with rheumatoid arthritis for over two years; 68 (65%) in the direct access group and 52 (50%) in the control group completed the study (P = 0.04). MAIN OUTCOME MEASURES: Clinical outcome: pain, disease activity, early morning stiffness, inflammatory indices, disability, grip strength, range of movement in joints, and bone erosion. Psychological status: anxiety, depression, helplessness, self efficacy, satisfaction, and confidence in the system. Number of visits to hospital physician and general practitioner for arthritis. RESULTS: Participants were well matched at baseline. After six years there was only one significant difference between the two groups for the 14 clinical outcomes measured (deterioration in range of movement in elbow was less in direct access patients). There were no significant differences between groups for median change in psychological status. Satisfaction and confidence in the system were significantly higher in the direct access group at two, four, and six years: confidence 9.8 v 8.4, 9.4 v 8.0, 8.7 v 6.9; satisfaction 9.3 v 8.3, 9.3 v 7.7, 8.9 v 7.1 (all P < 0.02). Patients in the direct access group had 38% fewer hospital appointments (median 8 v 13, P < 0.0001). CONCLUSIONS: Over six years, patients with rheumatoid arthritis who initiated their reviews through direct access were clinically and psychologically at least as well as patients having traditional reviews initiated by a physician. They requested fewer appointments, found direct access more acceptable, and had more than a third fewer medical appointments. This radical responsive management could be tested in other chronic diseases.

Kirwan JR, Mitchell K, Hewlett S, Hehir M, Pollock J, Memel D, Bennett B. · Academic Rheumatology, University of Bristol Division of Medicine, Bristol Royal Infirmary, Bristol, UK. · Rheumatology (Oxford). · Pubmed #12626791 links to  free full text

Abstract: BACKGROUND: Patients with rheumatoid arthritis (RA) are traditionally seen regularly as out-patients, irrespective of whether it is appropriate or timely to see them. A randomized controlled trial has shown that over 2 yr, seeing patients only when they or their general practitioner (GP) request a review saves time and resources and is more convenient. This study aimed to assess clinical and psychological outcomes when the trial was extended to 4 yr. METHOD: A total of 209 patients were randomized into either 'routine review' (control) or 'no routine follow-up' but access to rapid review on request (direct access). Clinical and psychological status and patient satisfaction and confidence were reviewed after 24 and 48 months. RESULTS: Mean age at entry was 56 yr and mean disease duration 11 yr, and 134 patients remained in the study after 48 months. There were no differences between the groups, nor between those who completed the study and those who did not. There were no major differences in clinical or psychological status between the groups at 24 or 48 months. However, self-efficacy for function was stronger at 48 months for direct access patients (mean 64.0 vs 52.0, P=0.005), as was self-efficacy for other symptoms (mean 67.8 vs 59.3, P=0.009). Satisfaction at 48 months was increased in direct access compared with control (mean 8.7 vs 7.6, P=0.01) as was confidence in the system (8.9 vs 7.6, P<0.01). CONCLUSION: It is effective for patients with rheumatoid arthritis to have no regular follow-up, provided they have access to rapid review when they or their GP request it. Patients using a self-referral system of care had higher self-efficacy and greater satisfaction and confidence than those using the traditional system.

Radford S, Carr M, Hehir M, Davis B, Robertson L, Cockshott Z, Tipler S, Hewlett S. · Clinical Psychology Department, University of Plymouth, UK. · Musculoskeletal Care. · Pubmed #18649347 No free full text.

Abstract: OBJECTIVES: The diagnosis of rheumatoid arthritis (RA) brings rapid pharmacological and multidisciplinary team interventions to address inflammatory processes and symptom management. However, people may also need support on the journey to self-management. The aim of this study was to explore what professional support patients feel they receive upon diagnosis, and what support they feel would be most helpful. METHODS: Two focus groups comprised patients with at least five years'; disease duration (n = 7), and patients more recently diagnosed (5-18 months, n = 5). The latter had attended at least two appointments in a rheumatology nurse specialist clinic during the previous year, aimed at providing support upon diagnosis. Transcripts were subjected to thematic analysis to identify common issues regarding support needs, which were then grouped into themes. Interviewing and analysis was performed by researchers not involved in clinical care. RESULTS: Four overarching themes emerged. 'Information' was needed about the symptoms of RA, its management and personal outcome, while 'Support' related to emotional needs ('It's quite hard to grasp the enormity of it'). Information and Support overlapped, in that patients wanted someone to talk to, and to be listened to. These two themes were underpinned by issues of service delivery: 'Choice' (patient or professional to talk to, groups, one-to-one) and 'Involvement' (holistic care, partnership), which overlapped in terms of the opportunity to decide when and which interventions to access. CONCLUSIONS: People with RA report not only informational, but also emotional support needs at diagnosis. The potential for delivering emotional support to patients around the time of diagnosis warrants further exploration.

Hehir M, Carr M, Davis B, Radford S, Robertson L, Tipler S, Hewlett S. · University of the West of England, Bristol, UK. · Musculoskeletal Care. · Pubmed #17922490 No free full text.

Abstract: BACKGROUND: Following a diagnosis of rheumatoid arthritis (RA), patients have to adapt to lifelong, unpredictable but repeated episodes of pain and disability, potentially leading to permanent loss of function and its consequences on their lives. We established nurse clinics with the aim of supporting newly diagnosed RA patients in adapting to and managing their long-term condition. The aim of this study was to explore the content of clinic discussions in this new clinical service, in order to ascertain patients' needs upon diagnosis. METHODS: All clinic letters from the nurse to the family doctor were analysed. Every topic mentioned was systematically coded independently by a researcher and a patient research partner, who compared and agreed codes. Codes were organized into categories, and, finally, into overarching themes. RESULTS: Twenty-four patients had 74 appointment letters. A total of 79 codes were identified, from which ten categories emerged, and, finally, three overarching themes. The first theme related to 'Emotional support', which underpinned the other two themes and was discussed in almost all appointments. Issues included discussions about the emotional consequences of RA, needing time to adjust, frustration and fears for the future. The second theme 'Practicalities of the treatment of RA', included subordinate themes relating to the nature of RA, such as identity, cause, timeline, consequences and treatment. Medication issues were discussed and referrals to the multidisciplinary team were made. The final theme related to the 'Self-management of RA', and included discussions on physical symptoms and their management. CONCLUSIONS: The offer to attend a nurse clinic soon after diagnosis allowed RA patients to discuss a wide range of practical and self-management issues. However, most patients also took the opportunity and time to discuss emotional reactions and adaptations to diagnosis. The data suggest an unmet need for emotional support that a nurse clinic might be able to provide.

Kirwan JR, Hewlett SE, Heiberg T, Hughes RA, Carr M, Hehir M, Kvien TK, Minnock P, Newman SP, Quest EM, Taal E, Wale J. · University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · J Rheumatol. · Pubmed #16265712 No free full text.

Abstract: The Patient Perspective Workshop at OMERACT 7 addressed the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease. A particular emphasis at this workshop was placed on fatigue, but other areas included well-being, real-time assessment, patient priorities, and needs in early and late disease. Through a series of overview presentations, discussion groups, and plenary sessions, workshop participants (who included 19 patients) clarified what is known and what are the outstanding issues for future research. The importance of further work on clarifying the validity of fatigue measurements in RA has been confirmed, and with at least one suitable instrument available there will be strong pressure to include fatigue in a redefined core set of outcome measures in RA. In the other 4 areas covered there are important issues that can be addressed by enquiry and experiment and that together provide a challenging research agenda. At the final plenary session the OMERACT conference endorsed, by a large majority, the proposal that fatigue may warrant consideration for inclusion in the OMERACT core set for RA.

Kirwan JR, Ahlmén M, de Wit M, Heiberg T, Hehir M, Hewlett S, Katz PP, Minnock P, Quest EM, Richards P. · University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · J Rheumatol. · Pubmed #16265711 No free full text.

Abstract: The first OMERACT Patient Perspective Workshop took place at OMERACT 6 in 2002. Through a series of meetings and discussion sessions a research agenda emerged and this report outlines progress made on this agenda. Work on identifying novel outcomes, instruments, and methods has shown similarities across European countries in the importance patients with rheumatoid arthritis (RA) attach to specific outcomes, in particular fatigue. Validation of an appropriate instrument to measure fatigue in patients with RA is currently being investigated. Frequent or repeated real-time assessment of symptoms such as pain and fatigue is becoming possible using electronic systems. An OMERACT Patient Panel has been established, and has produced a glossary for patients involved in supporting clinical research. In some centers, efforts are being made to provide Patient Research Partners with knowledge and skills that will enhance their contribution, and some of these approaches will be incorporated into OMERACT 7. The research agenda that was developed during the first Patient Perspective Workshop has stimulated new work in several areas. In addition, international attention has been drawn to the need to make sure that the patient's perspective is not lost among the technical expertise of rheumatology.

Hewlett S, Cockshott Z, Byron M, Kitchen K, Tipler S, Pope D, Hehir M. · University of Bristol, UK. · Arthritis Rheum. · Pubmed #16208668 links to  free full text

Abstract: OBJECTIVE: Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. The aim of this study was to explore the concept of fatigue as experienced by patients with RA. METHODS: Fifteen patients with RA and fatigue (> or =7 on a 10-cm visual analog scale) were individually interviewed and asked about the description, cause, consequence, and management of fatigue. Transcripts were systematically analyzed by 2 researchers independently, relevant phrases were coded, and earlier transcripts were checked for the emerging codes. A random sample of analyses were independently reviewed. A total of 191 codes arising from the data were grouped into 46 categories and overarching themes. RESULTS: Vivid descriptions reflect 2 types of fatigue: severe weariness and dramatic overwhelming fatigue. RA fatigue is different from normal tiredness because it is extreme, often not earned, and unresolving. Participants described physical, cognitive, and emotional components and attributed fatigue to inflammation, working the joints harder, and unrefreshing sleep. Participants described far-reaching effects on physical activities, emotions, relationships, and social and family roles. Participants used self-management strategies but with limited success. Most did not discuss fatigue with clinicians but when they did, they felt it was dismissed. Participants held negative views on the management of fatigue. CONCLUSION: The data show that RA fatigue is important, intrusive, and overwhelming, and patients struggle to manage it alone. These data on the complexity of fatigue experiences will help clinicians design measures, interventions, and self-managment guidance.

Memel DS, Kirwan JR, Langley C, Hewlett S, Hehir M. · Air Balloon Surgery, United Bristol Healthcare NHS Trust, Bristol BS2 8HW, UK. · Rheumatology (Oxford). · Pubmed #11792887 links to  free full text

Abstract: BACKGROUND: Many eligible people with arthritis do not receive disability benefits. Application forms are lengthy and complex, and doctors and nurses are often unsure which patients would qualify. AIM: To investigate how severe disability on the Health Assessment Questionnaire (HAQ) relates to successful application for disability benefits by people with osteoarthritis (OA) and rheumatoid arthritis (RA). METHOD: RA patients attending a hospital out-patient rheumatology clinic and patients with OA or RA in two general practices completed an HAQ and were asked about receipt of disability benefits. Those scoring 2 or more on the HAQ (severe disability) and not in receipt of benefits were offered professional help to complete applications for Disability Living Allowance (DLA) or Attendance Allowance (AA). RESULTS: Eighty per cent of patients with an HAQ score of 2 or more were already in receipt of benefits. Seventy-nine per cent of the new applicants applied successfully, the average benefit being in excess of 2580 pounds per annum. CONCLUSION: This initial study suggests that people who score 2 or more on the HAQ should be encouraged to apply for disability benefits. A test of the generalizability of these findings and the success rate associated with lower HAQ scores should be undertaken.