Deborah Palmer

Shared decision making for patients living with inflammatory arthritis

Providing adequate care for people with inflammatory arthritis is an ongoing challenge. In recent years significant progress has been made in the treatment of inflammatory arthritic conditions. The availability of a wide range of disease-modifying anti-rheumatic drugs as well as biologic therapies has not only improved treatment, but also made treatment decisions much more complex. This wider range of improved treatment options happened at the same time as a clear move towards patient-centred care and implementing shared decision making for both medical and surgical conditions. Implementing shared decision making has been reported to be associated with higher satisfaction and better adherence to therapy. Electronic shared decision making has more recently been suggested as a tool for clinical practice. The aim of this article is to look at further integrating shared decision making in standard rheumatology practice in view of the available evidence and the outcomes of a study looking at a recently developed patient shared decision guide.

Towards a multidimensional patient reported outcome measures assessment: development and validation of a questionnaire for patients with ankylosing spondylitis/spondyloarthritis.

OBJECTIVE To assess the validity, reliability and responsiveness to change of a patient self-reported questionnaire that can assess construct outcome measures of patients with ankylosing spondylitis (AS)/spondyloarthritis. METHODS The questionnaire was developed by integrating information obtained from patients suffering from AS/spondyloarthritis based on the Rasch model. The questionnaire includes assessment of functional disability, quality of life, VAS for spinal pain, joint pain, global status, fatigue, duration of morning stiffness, review of the systems, falls and cardiovascular risks, self-helplessness as well as self-reported joint and soft tissue pain. The questionnaire was completed by 267 consecutive patients with AS (124) and spondyloarthritis (143). RESULTS The PROMs questionnaire was reliable as demonstrated by a high-standardized alpha. The questionnaire items correlated significantly (p<0.01) with clinical parameters of disease activity. Patient reported tender joints and enthesitis scores correlated significantly with the physicians scores (correlation coefficient 0.848 and 0.821 respectively). Changes in functional disability, quality of life as well as self-helplessness scores showed significant (p<0.01) variation with diseases activity status. The PROMs questionnaire showed also a high degree of comprehensibility (9.3). CONCLUSION The developed PROMs questionnaire is a reliable and valid instrument for assessment of patients suffering from AS and spondyloarthritis. Being short, rapid and comprehensive, this adds more to its applicability. The data support the value of completion of the simple two pages patient questionnaire, which provides a quantitative written documented record by the patient, at each visit to the rheumatologist.

Implementing Shared Decision Making In Clinical Practice: Outcomes ofa New Shared Decision Making Aid for Chronic Inflammatory ArthritisPatients

Abstract Objective: To develop and evaluate an evidence-based shared decision making (SDM) aid for patients with chronic arthritic conditions to inform them about the pros and cons of their treatment options and to help them make an informed shared decision. Methods: A multidisciplinary team defined criteria for the SDM as to design, medical content and functionality, particularly for elderly users. Development was according to the international standard (IPDAS). 174 patients with rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, who were either treated or not yet treated, evaluated the tool, in a randomized controlled study, in comparison to control group composed of 171 patients treated according to standard methods. Results: The SDM aid was developed to offer information about the disease, the risks and benefits of treatment. 98% of the patients included reported comprehensibility of >85/100. There was no significant difference between the online and paper format SDM aids. The patients’ adherence to anti-rheumatic therapy was significantly (p<0.1) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly (p<0.01) higher in the control group at 12 months of treatment. Conclusion: This evidence-based SDM aid for inflammatory arthritis patients, developed according to IPDAS criteria, was found to be a simple, user-friendly tool which can be implemented in standard clinical practice. It offered the chronic arthritis patients evidence-based information about the pros and cons of treatment options, improved patients’ understanding of the disease, communication with their treating clinician as well as ability to make an informed decision.

Tackling comorbidity associated with rheumatic diseases in standard practice

In spite of the dramatic improvement of the long-term prognosis of inflammatory arthritic conditions, patients living with arthritis remain more likely to have a shorter lifespan in contrast to the age-matched population without arthritis. This high incidence of morbidity-mortality has been attributed to an increased prevalence of comorbidities, particularly cardiovascular disease, infections, and the development of malignant space-occupying lesions. In spite of the published guidelines highlighting the importance of comorbidity assessment and management, implementing these recommendations in standard clinical practice remains a challenge for the treating rheumatologists and rheumatology nurse specialists. This article will review the challenge of comorbidity in inflammatory arthritic conditions and its dynamic nature, the impact on patient management, as well as recent trends in the screening and assessment of comorbidity risk in standard clinical practice.

Quality of life: a valid perspective for patients with rheumatoid arthritis.

therapy and the new concepts of ‘window of opportunity’ as well as ‘treat-to-target’ approach gave a brighter outlook for patients with rheumatoid arthritis (RA) who can look forward to a much better quality of life than they did several years ago. This review discusses the value of quality-of-life assessment, available tools and the growing role of technology in its evaluation in standard practice. RA is a chronic and lifelong autoimmune disorder that results in significant pain, disability and excess mortality, particularly if untreated or inadequately treated. In addition to the inflammatory component of the disease, RA has major and diverse effects on the patients’ lives, spanning both physical and mental aspects of wellbeing, leaving many patients highly concerned about increased physical limitations and the loss of independence (Matcham et al, 2014). Furthermore, RA patients may feel tired, anxious or depressed and as a result experience activity constraints, for example, they may not want to socialise and may be restricted in seeking remunerative employment (Geuskens et al, 2007). With the recent developments in RA treatment and the possibility of achieving disease remission (Smolen et al, 2013; Singh et al, 2015), the impact of RA on quality of life and its effect on the patients’ selfdefinitions and future expectations has received increasing attention (Palmer and El Miedany, 2010). However, in the face of an unpredictable and uncontrollable clinical course, people may become helpless. When helpless, people demonstrate affective changes (e.g. become depressed), as well as behavioural changes (e.g. decreased problemsolving behaviours). This may explain why some RA patients do poorly in relation to medical compliance, health maintenance Quality of life: a valid perspective for patients with rheumatoid arthritis