Rheumatology outcomes: the patient's perspective

Our aim was to explore the patient's perspective of outcomes in rheumatoid arthritis (RA) to identify which outcomes are important to patients and how patients calibrate what constitutes a meaningful change in those outcomes. A qualitative study was performed using focus groups in 5 clinical centers in different geographical locations in the UK. Each group contained 6 to 9 patients with RA who were purposefully sampled to include men and women with a range of age, disease duration, functional disability, work disability, and current disease activity. Each focus group lasted around 1 h and addressed 3 questions: What outcomes from treatment are important to RA patients? What makes patients satisfied or dissatisfied with a treatment? How do patients decide that a treatment is working? Patients identified as important not only physical outcomes such as pain and disability, but also fatigue and a general feeling of wellness. The relative importance of these outcomes depended on the stage of disease and on specific situations, such as a disease flare. Satisfaction was influenced by communication, access to treatment, and treatment efficacy. Treatment efficacy was related to symptom reduction, with the magnitude of reduction necessary for efficacy dependent on the stage of disease. For example, large changes were deemed necessary with disease of long duration, while in early disease, even small changes could be important. Our data support existing knowledge of the importance of pain and mobility as treatment outcomes, but raise new and important issues: Some outcomes of importance to patients are not currently measured and there are no measures available to capture them. Existing measures need to be calibrated to take account of the differing importance of outcomes at different stages of disease and variations in the magnitude of change within the same outcome that indicate treatment efficacy.     

Optimal care for rheumatoid arthritis: a focus group study

Our study sought to identify barriers to optimal care for individuals with rheumatoid arthritis (RA). Our study was set in a population with universal access to comprehensive health care in the context of a university hospital health network. Using purposive sampling, we invited RA patients, health professionals, and decision makers from urban and rural regions to participate in structured focus group interviews. Content analysis was performed to determine themes emerging from the data. We identified four general themes. First, initial barriers to optimal care for people begin before primary care contact, at the level of the general population and/or related to primary care access. Second, many factors (at the patient, physician, and system level) influenced how quickly a patient is referred from primary to specialty care. Third, after referral, multiple comanagement issues influence patient outcomes. Fourth, optimizing RA care requires adequate resources. Participants emphasized the need for more education (of patients, of health care providers, and within the general community), better communication between and among patients and health care providers, and more efficient use of existing resources. Our work provides insights regarding barriers to and facilitators of optimal care in RA. Further work with these stakeholder groups in our health care region will examine potential solutions and the feasibility of their implementation. Our work provides an example of how research can assist stakeholder leaders in creating structured and incremental plans to improve health care delivery for persons with chronic diseases like RA.     

Characteristics of patients with rheumatoid arthritis presenting for physiotherapy management: a multicentre study

Objectives: To describe the characteristics of patients with rheumatoid arthritis (RA) attending for physiotherapy management in Ireland. Methods: Managers of physiotherapy departments in the 53 hospitals in Ireland were invited to participate in a multi‐centre observational study over a 6‐month period. Data on patients with RA the day of presentation for physiotherapy management were recorded. These data related to patient demographic details, disease management, aids and appliances, splint and orthoses usage and occupational issues. The Health Assessment Questionnaire was also recorded for each patient. Results: A total of 273 patients from eight physiotherapy departments participated in the survey (n = 199; 73% female). Mean age of the participants was 59.3 (SD 12.5) years with mean disease duration of 13.8 (SD 10.6) years. The majority of the patients were inpatients (n = 170, 62%). Sixty‐eight per cent of patients had attended for previous physiotherapy treatment and 98% were under current rheumatologist care. Biologic therapies were prescribed to 11% of patients. Use of splint and foot orthoses was high with 133 patients (49%) wearing splints and 75 (31%) wearing foot orthoses. The majority of patients had moderate (n = 119, 44%) or severe (n = 94, 35%) disability as per Health Assessment Questionnaire (HAQ) score. Mean HAQ score was 1.5, with HAQ scores showing increasing disability with increasing age, disease duration and erythrocyte sedimentation rate (ESR) levels. Conclusions: Patients with RA attending for physiotherapy management present with varied profiles. This study provides valuable information on the characteristics of patients with RA attending for physiotherapy management which will contribute to physiotherapy service planning and delivery and will optimize patient care. Copyright © 2006 John Wiley & Sons, Ltd.     

Assessing the need for arthritis training among paid carers in UK residential care homes: A focus group and interview study

Objective

The aim of the study was to perform an educational and training needs assessment for arthritis care in residential homes.

Methods

Qualitative data were collected from three purposively selected residential homes: one independent, one in a regional chain and one in a national chain. Three researcher‐led focus groups were conducted with paid carers (N = 22) using vignette exercises; interviews were undertaken with 12 residents with joint pain (N = 12), five managerial staff and two general practitioners (GPs). Data were compared and analysed thematically around care practices, communication and training.

Results

There is a lack of arthritis awareness among paid carers, although they regularly identify and manage arthritic symptoms. Residents rely on paid carers to recognize when pain and mobility problems are treatable. Senior staff and GPs rely on carers to identify arthritic problems. However, paid carers themselves undervalued the health significance of their activities and lacked the confidence to communicate important information to healthcare professionals. Few of the paid carers had received training in arthritis and many expressed a strong desire to learn about it, to improve their ability to provide better care.

Conclusions

Education for paid carers regarding arthritis is lacking and lags behind education about conditions such as dementia and diabetes. To meet the expectations of their care roles fully, paid carers require an awareness of what arthritis is and how to recognize symptoms. We suggest that training should be aimed at improving confidence in communicating with colleagues, residents and health professionals, with senior care staff receiving more in‐depth training.     

A double blind multicentre study of OM-8980 and auranofin in rheumatoid arthritis.

The therapeutic efficacy of the immunomodulator OM-8980 in rheumatoid arthritis was compared with that of auranofin, an oral gold salt, in a double blind, randomised multicentre study lasting six months. Seventy patients were treated with auranofin and 75 with OM-8980. The patients of both groups improved significantly at three and six months for all the clinical parameters observed: Ritchie index, number of swollen joints, morning stiffness, pain, grip strength, intake of non-steroidal anti-inflammatory drugs, and erythrocyte sedimentation rate. No serious side effects were observed in either group. The patients receiving auranofin had more adverse reactions, mainly affecting the gastrointestinal system.     

Patient perspectives on long-term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group

ObjectivesTo identify patient-centered domains with long-term relevance to people with rheumatoid arthritis (RA).MethodsWe conducted semi-structured individual cognitive interviews of patients with RA with at least five years of disease duration, sampled from five different countries (United States, Italy, Spain, Mexico, and Argentina). Participants were encouraged to discuss their long-term concerns regarding RA. Interviews were transcribed and analyzed using qualitative content analysis within a constructivist/interpretivist theoretical framework.ResultsTwenty-eight participants were interviewed, 24 were women. Six main themes, representing important aspects of the daily life of people with RA were generated: (i) Living with symptoms and functional limitations, (ii) Lack of participation, (iii) Partner and family issues, (iv) Risk of damage to vital organs, (v) Coping strategies, and (vi) Healthcare concerns, primarily expressed by participants from non-European countries lacking universal healthcare coverage. In addition, participants discussed the importance of contextual factors and how they impact long-term outcomes. These included attitudes towards disease, social support, or financial burdens.ConclusionsWe identified six domains of importance to people with RA that are seldom measured in longitudinal registries and should be considered in patient-centered longitudinal studies.     

Use and effectiveness of tocilizumab among patients with rheumatoid arthritis: an observational study from the British Society for Rheumatology Biologics Register for rheumatoid arthritis

The aims of the present study are to describe the characteristics of rheumatoid arthritis (RA) patients selected for tocilizumab (TCZ), compare the “real-world” effectiveness of TCZ and tumour necrosis factor inhibitors (TNFi) when used as a first biologic and assess the influence of past biologic exposure/concurrent methotrexate (MTX) therapy on post-TCZ treatment outcomes. The British Society for Rheumatology Biologics Register (BSRBR-RA) is a prospective cohort study following RA patients starting biologics in the UK. This includes patients starting TCZ as first or subsequent biologic, alongside biologic-naïve patients starting TNFi. Six-month disease activity and 1-year drug survival were compared between biologic-naïve patients starting TCZ versus TNFi and first-line versus subsequent TCZ users and TCZ users with MTX versus without using regression models adjusted by propensity score. Two hundred seventeen patients started TCZ, and 2419 started TNFi as first biologic. Seven hundred seventy-seven started TCZ after other biologics. First-line TCZ users had a higher prevalence of pulmonary fibrosis and cancer history than TNFi users. The first-line TCZ users were more likely to achieve DAS28 remission at 6 months than first-line TNFi, but other improvement markers were similar. The treatment response at 6 months was similar between subsequent-line TCZ users and first-line users after adjusting for baseline patient differences. Concurrent MTX use was not associated with treatment response in either first- or subsequent-line TCZ users. TCZ has been primarily used as subsequent-line biologic in the UK. When used as first line, the response appears similar to that observed in patients starting TNFi, suggesting that clinical response alone should not decide between initial biologic therapies.     

Cervical spine surgery in rheumatoid arthritis. A Swedish nation-wide registration of 83 patients

OBJECTIVE: To investigate diagnostic methods, surgical methods and indications, early complications and short term outcome of cervical spine surgery for rheumatoid arthritis (RA). METHODS: A nation-wide registration of rheumatoid cervical spine surgery carried out in Sweden during 1993. RESULTS: Eighty-six (74 primary) procedures in 83 patients were reported from 11 hospitals. Pain was a more common indication for surgery than was neurologic impairment. C1-C2 instability or subluxation was present in 66/82, subaxial subluxations in 27/82 and atlantoaxial impaction in 10/82 procedures (data partly missing in one case). Indications for surgery and preoperative investigations were found to be reasonably uniform, but surgical methods and post-operative care varied between hospitals. Posterior fusion was performed in 76 patients. C1-C2 wiring with bone grafting was the most common procedure followed by occipito-cervical fusion with wires and bone cement. Subaxial cervical decompression without fusion, posterior fusion with onlay graft only, and carbon fiber grafts were used in a small number of patients. Total mortality was 5/83. The early complication rate was low, but 17 patients showed recurrent subluxation at follow-up at median 7 (1-17) months. Seven of them required reoperation in the same segment. CONCLUSION: The variation in treatment policy and number of operated patients in the different hospitals speak in favor for centralization of cervical spine surgery in RA. New methods for C1-C2-fusion need to be evaluated.     

Personal and economic burden of late-stage rheumatoid arthritis among patients treated with adalimumab: an evaluation from a patient's perspective

Objectives. This study evaluated the patients’ perspectiveof burden of disease among 505 patients with severe, long-standingrheumatoid arthritis receiving adalimumab. Methods. Health-related quality-of-life and resource use datawere collected during a 144-week open-label study. Results. Adalimumab maintained pain control and reduced theduration of morning stiffness. Work impairment decreased andwork productivity was maintained over the duration of the study.Costs were estimated at 2100 over the course of the study, andpersonal help and transportation costs comprised a large percentageof total costs. Conclusions. These results suggest that adalimumab could improvemany aspects of a patient's burden of disease. KEY WORDS: Rheumatoid arthritis, Patient perspective, Adalimumab, Out-of-pocket payments Submitted 31 May 2007; revised version accepted 31 October 2007.     

A long-term study of benorylate in patients with rheumatoid arthritis.

The analgesic and anti-inflammatory efficacy and adverse effects of benorylate were studied over a period of 6 months in 33 patients suffering from definite or classical rheumatoid arthritis. The average dose used was 6 g daily and examinations were made before treatment and at regular intervals during treatment to assess the clinical status of the patient, tolerance to the drug and any effect on blood, liver or renal function. Benorylate had a satisfactory effect in 28 patients. Additional treatment was requried in 3 cases and treatment discontinued in 2 cases. Distinct improvement of grip strength, morning stiffness and E.S.R. in 25 cases indicates the anti-inflammatory efficacy of benorylate. There were no signs of toxicity to bone marrow, liver or kidney. Severe side effects such as stomch ulcers, gastrointestinal bleeding and severe allergic complications were not observed. Side effects such as constipation and tinnitus that occurred at the beginning of treatment were mainly of a a passing nature and disappeared without a need to change therapy. Benorylate is suitable for the treatment of recent rheumatoid arthritis of a low to moderate activity as well as for long-term treatment.     

A comparative study of patient-reported functional outcomes in acute rheumatoid arthritis

OBJECTIVE: To assess the performance of the Barthel Index (BI) in patients with rheumatoid arthritis (RA) in the acute care hospital, as compared to the Stanford Health Assessment Questionnaire (HAQ) and the Hannover Functional Questionnaire (Funktionsfragebogen Hannover, FFbH). METHODS: A prospective study of 97 patients with RA admitted to an acute rheumatology hospital with new onset or acute flare of RA. Patients were required to self-complete the BI, the HAQ, and the FFbH. Disease activity was measured using the Disease Activity Score (DAS28). RESULTS: Seventy-eight percent of patients were female, average age was 61.5 (SD 12.5) years, and 72.2% were rheumatoid factor-positive. The median HAQ was 1.29 (range 0-3), median FFbH was 50% (6-100%), and median BI was 95 (0-100), and distribution was highly skewed. All measures of physical functioning were significantly correlated with each other and with the DAS28; however, the BI discriminated poorly between low and high disease activity. CONCLUSION: The BI is not a useful instrument to assess physical functioning in patients with acute symptoms of RA, but may have a role in assessing patients with comorbidities and in assessing nursing care needs in the acute care hospital.     

Management of rheumatoid arthritis: the 2012 perspective

Management of rheumatoid arthritis (RA) has improved over the last 10 years. These changes have been monitored in the Institute of Rheumatology, Rheumatoid Arthritis (IORRA) observational cohort, and clinical remission has become a realistic goal. However, we should recognize that the ultimate goal of treatment is to improve long-term outcomes. These improvements have been achieved not only by new drugs, but also by the overall approach toward treating patients. Biologics in RA have been successful; however, safety concerns and pharmacoeconomical issues are still debated. Protein kinase inhibitors have been developed, and can be called “molecular-targeting antirheumatic drugs” (MTARDs), as opposed to “disease-modifying antirheumatic drugs.” In comparison with biologics, oral MTARDs should be less expensive; however, their safety profile should be confirmed. Considering the limitations of randomized trials, it is encouraged to conduct studies based on daily practice. It is time to consider the application of the evidence generated from “our” patients to patients in daily practice, namely institute-based medicine as opposed to evidence-based medicine, of which “IORRA-based medicine” would be representative. Finally, there remains much for us rheumatologists to do for our patients, including patient-perspective approaches.     

Limited results of group self-management education for rheumatoid arthritis patients and their partners: explanations from the patient perspective

This study aimed to identify the reasons for limited results of group self-management for RA patients and their partners from the patient perspective. Semi-structured interviews with ten male and ten female patients who had participated in group self-management with or without their partner were content analyzed with respect to motivation to participate and the effects of the program on them. The limited effects of the self-management program appear to be linked with low motivation to participate and to change health behavior. The data show that a decline in health and also stressful life events might be associated with the disappointing effects of the program. Three strategies were proposed for improving the program’s effects: (a) provide information about the program in advance to ensure that patients have appropriate expectations. (b) Enhance intrinsic motivation to change health behavior by counseling techniques. (c) Tailoring with respect to motivation and current concerns could help to form more homogeneous groups or could be the basis for a tailored online intervention.