Validation of the Psoriatic Arthritis Impact of Disease (PsAID) Questionnaire and its potential as a single-item outcome measure in clinical practice.

OBJECTIVES: The Psoriatic Arthritis Impact of Disease (PsAID) Questionnaire is a recently developed patient-reported outcome measure (PROM) of disease impact in psoriatic arthritis (PsA). We set out to assess the validity in an independent cohort of patients, estimate the minimally important difference for improvement and explore the potential of individual components of the PsAID in clinical practice. METHODS: Data were collected prospectively for a single-centre cohort of patients with PsA. Construct validity was assessed by Spearman correlation with other PROMs and reliability by intraclass correlation coefficient (ICC) at 1 week. Sensitivity to change at 3 months was determined by the standardised response mean (SRM) in those patients with active disease requiring a change in treatment. RESULTS: A total of 129 patients (mean ±SD age 52.1±13.3, 57% women, disease duration 10.2±8 years) completed the baseline questionnaires and assessments. The mean baseline PsAID12 score was 3.92±2.26 with an ICC of 0.91 (95%CI 0.87 to 0.94). The SE of measurement was 0.51 and the minimal detectable change was 1.41. There was strong correlation (r≥0.70) with most of the PROMs studied and moderate correlation with clinical outcomes (r=0.40-0.57). The SRM of the PsAID12 was 0.74 (95%CI 0.45 to 0.97). There was strong correlation with individual PsAID items and their corresponding PROM questionnaires (r≥0.67). CONCLUSION: The PsAID is a reliable, feasible and discriminative measure in patients with PsA. The good responsiveness of the PsAID and strong correlation of individual items with other PROMS represent an opportunity to reduce questionnaire burden for patients in studies and clinical practice.

Psoriatic Arthritis Mutilans: Characteristics and Natural Radiographic History.

OBJECTIVE: (1) To compare clinical characteristics of patients with psoriatic arthritis (PsA) with PsA mutilans (PAM) and without PAM, and (2) to determine the rate of PAM radiographic progression. METHODS: A retrospective cohort study was conducted of all patients with PsA attending a teaching hospital. The most recent hand and feet radiographs were screened for PAM. Serial radiographs (earliest to most recent) were quantitatively scored for osteolysis, erosion, joint space narrowing, and osteoproliferation. RESULTS: Out of the 610 cases, 36 PsA cases had PAM (5.9%). PAM cases were younger at diagnosis of PsA than non-PAM cases (p = 0.04), had more prevalent psoriatic nail dystrophy (OR 5.43, p < 0.001), and worse health assessment questionnaire score (1.25 vs 0.63, p < 0.04). Radiographic axial disease (OR 2.31, adjusted p = 0.03) and especially radiographic sacroiliitis (OR 2.99, adjusted p = 0.01) were more prevalent in PAM. PAM were more likely than non-PAM cases to have used a disease-modifying antirheumatic drug (DMARD; OR 16.36, p < 0.001). Out of 33 cases, 29 PAM cases had initiated a synthetic DMARD and 4/13 had initiated anti-tumor necrosis factor (anti-TNF) prior to first demonstration of PAM. A median 5 radiographs were scored for each PAM case (interquartile range 3-7). PAM progressed from monoarticular (60%) to polyarticular (80%) involvement. Osteolysis was initially rapid and progressive in the hands and feet, tapering later during disease course. Nail dystrophy predicted more severe osteolysis (p = 0.03). CONCLUSION: Compared with non-PAM cases, PAM cases have earlier age at PsA diagnosis, poorer function, more prevalent nail dystrophy, and more radiographic axial disease/sacroiliitis. The rate of osteolysis is higher in earlier disease, and more severe in those with nail dystrophy. DMARD and anti-TNF therapy appear not to prevent PAM occurrence.

Exploring ankylosing spondylitis-associated ERAP1, IL23R and IL12B gene polymorphisms in subphenotypes of psoriatic arthritis.

OBJECTIVE: To ascertain whether AS-associated polymorphisms of ERAP1, IL23R and IL12B genes associate with subphenotypes of PsA, particularly axial radiographic disease once stratified by HLA-B27 and HLA-Cw*0602 status. METHODS: rs30187 (ERAP1 gene), rs6887695 (IL12B gene), rs11209026 and rs7530511 (IL23R gene) single nucleotide polymorphisms were genotyped in 263 PsA cases from a prospective cohort and compared with data from healthy controls (n = 3266-5422). ERAP1 results were stratified according to HLA-B27 and HLA-Cw*0602 status. Investigation of association with age at onset of psoriasis/PsA, arthritic joint count, axial radiographic disease, peripheral radiographic erosions, Psoriasis Area Severity Index, nail score and HAQ was made. RESULTS: There was a strong association between rs6887595 (IL12B) and PsA, with homozygosity for the major allele being more frequent in PsA than controls (odds ratio 1.70; 95% CI 1.3, 2.2; P < 0.001). A trend was demonstrated for the minor allele of rs11209026 (IL23R) to be less frequent in patients with erosive joint disease than in those without erosions or controls (7%, 14% and 12%, respectively). None of the polymorphisms associated with the presence of axial radiographic disease or other clinical parameters. CONCLUSION: We have confirmed a strong association between rs6887595 (IL12B) and PsA. A trend has been demonstrated between an IL23R variant and peripheral erosive disease. ERAP1 was not associated with axial radiographic disease in PsA. Spinal involvement in PsA may be genetically different from that in AS, which is in keeping with previous observations that the clinical and radiographic pattern of axial disease also differs.

Care and support of patients with psoriatic arthritis.

Psoriatic arthritis is an inflammatory disease of the joints associated with progressive joint destruction and loss of function. The additional challenge of managing psoriasis can mean patients' needs differ from those associated with other inflammatory joint conditions. This article discusses the goals of drug treatment and physical therapies in terms of minimising symptoms of the disease. In addition, the psychological effect of this physically debilitating and unpredictable disease is explored. Guidance is offered on how the nurse should address the individual needs of patients and the importance of regular monitoring to ensure safety and efficacy of treatments. The need for effective patient education is emphasised to ensure the person is better able to manage disease progression and any treatment regimens. The nurse's role should be viewed in the context of the multidisciplinary team to ensure all patient needs are met.

'To suddenly have a name for this thing was wonderful': the patient's experience of receiving a diagnosis of systemic lupus erythematosus.

OBJECTIVES: The aim of this study was to explore the patient's perception of receiving a diagnosis of systemic lupus erythematosus (lupus) and reports on their experience of the period between onset of symptoms and receiving a definitive diagnosis. METHODS: Focus groups were conducted in seven rheumatology centres. Forty-three participants were purposively selected and data were subjected to thematic deductive analysis. RESULTS: Focus group data generated three major themes. 'Diagnostic uncertainty and misdiagnosis' describes the frustration for many of experiencing years of often debilitating symptoms that have gone unacknowledged by health professionals and misunderstood by themselves. Some experienced the trauma of being misdiagnosed, which impacted on how they adjusted to their final diagnosis of lupus. 'Consequences of receiving a diagnosis' highlights the feelings of relief for participants at finally having a diagnosis, despite its implications. However, the manner in which this knowledge was delivered was often inappropriate and unsupported, affecting how they adjusted to future management of their condition. 'Impact on individuals' lives' explores how many felt empowered by finally receiving recognition for their symptoms, but the diagnosis of a relatively unknown condition with often invisible symptoms impacted on the response and support they received from those around them. CONCLUSION: It is essential health professionals have a greater understanding of the patient experience prior to receiving a diagnosis of lupus. The individual experience from symptom onset to diagnosis has a direct impact on the patient's subsequent acceptance of their diagnosis and response to management and therefore justifies the need for further research in this field.

'It's more scary not to know': a qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis.

OBJECTIVES: To identify the information needs of patients newly diagnosed with systemic lupus erythematosus (lupus), to inform the design of a future education package. METHODS: Focus groups were conducted in seven rheumatology centres in the UK with 43 purposively selected participants. Data were subjected to thematic inductive analysis. RESULTS: The first major theme, 'Impact of early information', describes how for many individuals information was scant and, as most had little prior knowledge of lupus, the information was difficult to absorb, leaving them with feelings of fear and confusion. 'Information received versus information sought' (theme 2) describes how few participants felt they had received clear, consistent information. For most, information was felt to be insufficient, forcing them to seek it elsewhere, which, if unsuitable, resulted in further distress. 'Early education needs' (theme 3) reflects that patients would rather be informed of potential problems than remain naïve. Patients felt that receiving a comprehensive information pack as an adjunct to verbal information from their clinician would be helpful, along with rapid access to knowledgeable professionals when they were ready to ask questions about their lupus. CONCLUSIONS: Participants stated information and support currently provided at diagnosis is inadequate for their needs. They would like detailed information, provided through a variety of formats. Crucially this should be supported by professionals and available at whatever point in the patient's journey they want to access such discussions .The challenge is for health professionals to meet these needs in the most beneficial and cost effective way.

Mortality in psoriatic arthritis - a single-center study from the UK.

OBJECTIVE: To determine whether the mortality in a cohort of patients with psoriatic arthritis (PsA) from a single center in the UK is significantly different from the general UK population. METHODS: Patients who were entered onto the PsA database at the Royal National Hospital for Rheumatic Diseases, Bath, between 1985 and 2007 were included in this study. Information on patient deaths was collected retrospectively. The National Health Service (NHS) Strategic Tracing Service was used to establish which patients were alive and which had died. Date and cause of death were confirmed by death certificates from the Registry of Births, Marriages and Deaths. A standardized mortality ratio (SMR) was calculated by matching the patient data to single-year, 5-year age-banded England and Wales data from the Office of National Statistics. RESULTS: In this cohort of 453 patients with PsA (232 men, 221 women), there were 37 deaths. Sixteen men and 21 women died. The SMR for the men was 67.87% (95% CI 38.79, 110.22), and for the women, 97.01% (95% CI 60.05, 148.92) and the overall SMR for the PsA cohort was 81.82% (95% CI 57.61, 112.78). The leading causes of death in this cohort were cardiovascular disease (38%), diseases of the respiratory system (27%), and malignancy (14%). CONCLUSION: These results suggest that mortality in our single-center PsA cohort is not significantly different from the general UK population. No increased risk of death was observed in this cohort.

Funding decisions in chronically sick individuals.

This article examines current research, literature and government policy that influences how health funding is allocated for treatment and care of the chronically sick. Chronic disease represents a huge burden of ill health in the UK and a substantial cost to the NHS. With both an increase in the ageing population and advancing technological developments giving doctors the theoretical ability to sustain the most fragile life, the issue of providing unlimited access of care to the chronically sick within financial limitations is clearly untenable. This article explores the issue of funding the needs of the chronically sick while posing a significant challenge both politically and financially to the healthcare system. It examines the controversial policies of rationing implemented by various governments since the conception of the NHS. Some have proved unworkable, all have been controversial, and still the challenge remains to provide a comprehensive care package with limited resources. The issue of how to ration resources to the chronically sick remains unresolved. Social gerontologists predict that living to 120 years of age may become the norm before the end of this century. Exploitation of the genome map and society's unwillingness to accept the inevitability of disability resulting from chronic illness will further increase pressure on healthcare financing and, as a result, demands will be forever increasing despite the most rigorous attempts at rationing.