Alison Carr

Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL).

Background: Because there is no muscle disease specific measure of quality of life (QoL), we wanted to develop and validate an individualized muscle disease specific measure of QoL for adults suitable for both clinical and research use. Methods: A literature review exploring QoL and its measurement resulted in the development of a theoretical model of QoL. This was used alongside qualitative interviews (n = 41) and a postal survey (n = 252) to design a questionnaire. The psychometric properties, validity (n = 95), reliability (n = 40), and responsiveness (n = 25) of the scale were assessed. Results: The Individualized Neuromuscular Quality of Life questionnaire (INQoL) consists of 45 questions within 10 sections. Four of these focus on the impact of key muscle disease symptoms (weakness, locking [i.e., myotonia], pain, and fatigue), five look at the impact (degree and importance of impact) muscle disease has on particular areas of life, and one section asks about the positive and negative effects of treatment. The questionnaire is structured to allow for variations in the individual characteristics that influence quality of life. Psychometric evaluation established construct validity and test–retest reliability. A preliminary assessment of responsiveness was obtained. Conclusions: The Individualized Neuromuscular Quality of Life is a validated muscle disease specific measure of quality of life developed from the experiences of patients with muscle disease and can be used for individuals or large samples.

The British Society for Rheumatology Guideline for the Management of Gout

Gout is the most common cause of inflammatory arthritis worldwide. In UK general practice, the overall prevalence has increased from 1.4% in 1999 to 2.49% in 2012 [1], despite the availability of effective and potentially curative urate-lowering drugs for >50 years and evidence-based British and European management guidelines for nearly a decade [2, 3]. Clinical manifestations of gout resulting from monosodium urate crystal deposition include tophi, chronic arthritis, urolithiasis and renal disease as well as recurrent acute arthritis, bursitis and cellulitis. Gouty arthritis and tophi are associated with chronic disability, impairment of health-related quality of life [4 7], increased use of healthcare resources and reduced productivity [8]. Gout is also frequently associated with co-morbidities such as obesity, dyslipidaemia, diabetes mellitus, chronic renal insufficiency, hypertension, cardiovascular disease, hypothyroidism, anaemia, psoriasis, chronic pulmonary diseases, depression and OA [1] as well as with an increase in all-cause mortality (adjusted hazard ratio 1.13, 95% CI: 1.08, 1.18) and urogenital malignancy [1, 9]. Sustained hyperuricaemia is the single most important risk factor for the development of gout. Hyperuricaemia occurs secondarily to reduced fractional clearance of uric acid in> 90% of patients with gout [10]. Age, male gender, menopausal status in females, impairment of

Does increasing the grades of the knee osteoarthritis line drawing atlas alter its clinimetric properties

Objectives: To (a) develop further logically derived line drawing atlases (LDAs) for grading radiographic knee osteoarthritis (OA); and (b) determine which is superior using metrological criteria. Methods: A series of LDAs (−3 to +3, −4 to +4, and −5 to +5) were produced by (a) incorporating additional grades for osteophyte and joint space width (JSW) above the 0–3 pilot LDA, over an equivalent range of disease; and (b) adding negative grades for JSW. 121 sets of bilateral knee radiographs (standing, anteroposterior plus flexed skyline), plus serial views of 68 tibiofemoral joints (TFJs) and 36 patellofemoral joints were scored twice by one observer for each LDA. Minimum JSW of 50 radiograph sets was directly measured and awarded a categorical grade dependent upon the boundaries of each LDA grade. Time taken to grade 30 randomly selected knee radiograph sets was measured. Results: Intraobserver reproducibility was similar for all LDAs, (weighted κ: JSW = 0.85–0.87; osteophyte = 0.77–0.79), with no deterioration with increasing grades. Criterion validity favoured the −5 to +5 LDA, which was also quickest to use. All atlases showed similar responsiveness (standardised response mean: medial TFJ JSW = 0.78–0.83; medial femoral osteophyte = 0.61–0.73), with most sites compromised by small sample size, little change in score, and high variation between subjects. Conclusions: A set of LDAs was created illustrating the full range of normality/abnormality likely to be encountered in a community study of knee pain or OA. Despite superior validity and equivalent reproducibility, improved responsiveness of the −5 to +5 LDA was not confirmed.

Pain in the rheumatic diseases

We were very interested to read Professor Croft’s article1 about pain in the rheumatic diseases because we are interested in studying the relation between patients’ perception of disease and objective signs.2 In the daily management of a cohort of approximately 600 patients with inflammatory arthritis at Poole Hospital we noticed a dissociation between reported pain and objective measures of disease activity in a number of patients. To further study this …

Investigating the barriers to effective management of musculoskeletal pain: an international survey

An international study was performed to investigate the discrepancy between physician and population perception of the management of musculoskeletal pain (MP). One thousand, one hundred and fifty-four people with MP and 604 primary care physicians randomly selected from six countries (UK, Germany, Italy, France, Australia and Mexico) were interviewed by telephone. The interviews were based on structured questionnaires that captured: the management of pain, knowledge about the condition, sources of information, information communicated within the consultation, and patient roles in pain management. People with MP are confused about the different treatment options available (up to 63% out of N = 1,154) to them and their relative benefits and risks (33–51%). Doctors are the most valued and appropriate source of information (by up to 80% of people, N = 1,154) but are difficult to access. When people do have a clinical consultation, there may be a disparity between the information doctors convey and patient recall of the information provided. For example, most doctors tell patients the number of tablets they will need to take to achieve optimal pain relief, but only 34–63% of people with MP recall being given this information. Lack of information may partially explain why so few people (7–36%) return to their doctor when their prescribed medication is ineffective. This survey identified lack of information as a potential barrier to effective treatment. Physicians’ perceptions that people with MP are not able to appraise all the information and may prefer a passive role in their care need to be challenged if patients are to be participants in the management of their condition.