Search

In two research projects, rheumatological patient education programmes were updated. The first step was to develop an expert consented framework for all rheumatological patient education programmes. From this, curricula and working materials for rheumatoid arthritis (RA) and axial spondyloarthritis (AS) were derived and two exemplary patient education manuals developed. A randomized controlled trail was designed for the five-hour RA basic education program. Finally, existing train-the-trainer training courses were adapted for these patient education programmes.

Objective Patients with Cushing’s syndrome (CS) have increased mortality. The aim of this study was to evaluate the causes and time of death in a large cohort of patients with CS and to establish factors associated with increased mortality. Methods In this cohort study, we analyzed 1564 patients included in the European Registry on CS (ERCUSYN); 1045 (67%) had pituitary-dependent CS, 385 (25%) adrenal-dependent CS, 89 (5%) had an ectopic source and 45 (3%) other causes. The median (IQR) overall follow-up time in ERCUSYN was 2.7 (1.2–5.5) years. Results Forty-nine patients had died at the time of the analysis; 23 (47%) with pituitary-dependent CS, 6 (12%) with adrenal-dependent CS, 18 (37%) with ectopic CS and two (4%) with CS due to other causes. Of 42 patients whose cause of death was known, 15 (36%) died due to progression of the underlying disease, 13 (31%) due to infections, 7 (17%) due to cardiovascular or cerebrovascular disease and 2 due to pulmonary embolism. The commonest cause of death in patients with pituitary-dependent CS and adrenal-dependent CS were infectious diseases (n = 8) and progression of the underlying tumor (n = 10) in patients with ectopic CS. Patients who had died were older and more often males, and had more frequently muscle weakness, diabetes mellitus and ectopic CS, compared to survivors. Of 49 deceased patients, 22 (45%) died within 90 days from start of treatment and 5 (10%) before any treatment was given. The commonest cause of deaths in these 27 patients were infections (n = 10; 37%). In a regression analysis, age, ectopic CS and active disease were independently associated with overall death before and within 90 days from the start of treatment. Conclusion Mortality rate was highest in patients with ectopic CS. Infectious diseases were the commonest cause of death soon after diagnosis, emphasizing the need for careful clinical vigilance at that time, especially in patients presenting with concomitant diabetes mellitus.

In two research projects, rheumatological patient education programmes were updated. The first step was to develop an expert consented framework for all rheumatological patient education programmes. From this, curricula and working materials for rheumatoid arthritis (RA) and axial spondyloarthritis (AS) were derived and two exemplary patient education manuals developed. A randomized controlled trail was designed for the five-hour RA basic education program. Finally, existing train-the-trainer training courses were adapted for these patient education programmes.

Background Surgery is the definitive treatment of Cushing’s syndrome (CS) but medications may also be used as a first-line therapy. Whether preoperative medical treatment (PMT) affects postoperative outcome remains controversial. Objective (1) Evaluate how frequently PMT is given to CS patients across Europe; (2) examine differences in preoperative characteristics of patients who receive PMT and those who undergo primary surgery and (3) determine if PMT influences postoperative outcome in pituitary-dependent CS (PIT-CS). Patients and methods 1143 CS patients entered into the ERCUSYN database from 57 centers in 26 countries. Sixty-nine percent had PIT-CS, 25% adrenal-dependent CS (ADR-CS), 5% CS from an ectopic source (ECT-CS) and 1% were classified as having CS from other causes (OTH-CS). Results Twenty per cent of patients took PMT. ECT-CS and PIT-CS were more likely to receive PMT compared to ADR-CS (P P P P Conclusions PMT may confound the interpretation of immediate postoperative outcome. Follow-up is recommended to definitely evaluate surgical results.

Working is a very important part of our life. There are lots of problems and barriers for people with chronic rheumatic diseases in starting a professional career. Furthermore it is a challenge to stay in the working process for many years. Great and never ending efforts are needed to get over multiple obstacles. But are there special aspects for men? And (why) is working so important especially for men? What is the meaning of working? What are the goals of working for our life and living? And what does it mean with respect to any “treat to target”? How can we be successful and what is success? Do we have to accept limits? And what strategies are available to manage a successful working life being a man with a chronic rheumatic disease? Even if we do not find any answers let us shed some light on these important questions from a patient9s view. Conclusion To be successful for men with rheumatic diseases in balancing work and life the following strategies might be helpful: Ability to work must be kept in mind when thinking of “treat to target” in people with chronic rheumatic diseases. Obstacles can be overcome and problems can be solved by multiple different solutions. Goals should be looked at from different points of view – particularly from the patient9s perspective. The aims should be tailored in an individual way to achieve personally defined success and happiness. Life is what you make it – especially in RHEUMATISM! Right Help Empowers Us – More Action Towards Independent Self-Management. Disclosure of Interest None declared