ABSTRACT
OBJECTIVES: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators. METHODS: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals. RESULTS: Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators. CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.
Subject(s)
Patient Satisfaction , Physician-Patient Relations , Quality of Health Care , Scleroderma, Systemic/therapy , Adult , Female , Health Personnel , Humans , Male , Middle Aged , Netherlands , Quality Indicators, Health Care , Scleroderma, Systemic/diagnosis , Surveys and Questionnaires , Treatment OutcomeSubject(s)
CARD Signaling Adaptor Proteins/metabolism , Calcium-Binding Proteins/metabolism , Cryopyrin-Associated Periodic Syndromes/diagnosis , Etanercept/therapeutic use , Inflammation/diagnosis , Spondylitis, Ankylosing/diagnosis , Tumor Necrosis Factor Inhibitors/therapeutic use , Adult , CARD Signaling Adaptor Proteins/genetics , Calcium-Binding Proteins/genetics , Cryopyrin-Associated Periodic Syndromes/drug therapy , Cryopyrin-Associated Periodic Syndromes/genetics , Female , Humans , Inflammation/drug therapy , Inflammation/genetics , Interleukin 1 Receptor Antagonist Protein/therapeutic use , Male , Mutation/genetics , Pedigree , Siblings , Spondylitis, Ankylosing/drug therapy , Spondylitis, Ankylosing/genetics , Treatment OutcomeABSTRACT
We present a 49-year-old man seen at the dermatology outpatient department with a 3-year history of painful swollen digits of hands and feet. On enquiry he reported dysuria. On examination we saw extensive swelling of the digits, keratosis of the nails, and some psoriasiform skin lesions on the soles of the feet. The differential diagnosis included acrodermatitis continua suppurativa, reactive arthritis and psoriatic arthritis. Radiographic imaging revealed the presence of arthritis. Testing proved negative for rheumatoid factor and positive for HLA-B27 making spondyloarthropathy the most likely diagnosis, either in the form of reactive arthritis or psoriatic arthritis. The patient was treated with combination therapy of doxycycline, methotrexate and folic acid. Because of insufficient response to therapy, the methotrexate dose was raised and eventually etanercept was added. During the last visit to the outpatient clinic, the patient still showed insufficient response to therapy.
Subject(s)
Dermatologic Agents/therapeutic use , Spondylarthropathies/diagnosis , Arthritis, Psoriatic/diagnosis , Arthritis, Psoriatic/drug therapy , Arthritis, Reactive/diagnosis , Arthritis, Reactive/drug therapy , Diagnosis, Differential , Doxycycline/therapeutic use , Folic Acid/therapeutic use , Humans , Male , Methotrexate/therapeutic use , Middle Aged , Spondylarthropathies/drug therapy , Treatment FailureABSTRACT
Matrix γ-carboxyglutamate (Gla) protein (MGP) is an important local inhibitor of vascular calcification, which can undergo two post-translational modifications: vitamin K-dependent γ-glutamate carboxylation and serine phosphorylation. While carboxylation is thought to have effects upon binding of calcium-ions, phosphorylation is supposed to affect the cellular release of MGP. Since both modifications can be exerted incompletely, various MGP species can be detected in the circulation. MGP levels were measured with two commercially available competitive and two novel sandwich assays in healthy controls, in patients with rheumatic disease, aortic valve disease, and end-stage renal disease, as well as in volunteers after vitamin K supplementation (VKS) and treatment with vitamin K antagonists (VKA). Major differences were found between the MGP assays, including significantly different behaviour with regard to vascular disease and the response to VKA and VKS. The dual-antibody assay measuring non-phosphorylated, non-carboxylated MGP (dp-ucMGP) was particularly sensitive for these changes and would be suited to assess the vascular vitamin K status. We conclude that the different assays for particular circulating MGP species allows the assessment of various aspects of the MGP system.
