Development and evaluation of evidence-based patient information handbooks about multiple sclerosis immunotherapies.

BACKGROUND: Multiple sclerosis treatment options are increasing. Evidence-based patient information (EBPI) are therefore crucial to enable patient involvement in decision making. Based on earlier work on decision support, patient information handbooks on 8 MS immunotherapies were developed, piloted and evaluated with support from the German Clinical Competence Network MS and the German MS Society. METHODS: Handbooks were structured according to EBPI concepts. Drafts were commented by patient representatives and neurologists with an MS expertise. Executive boards of the German MS Society and the Competence Network as well as pharmaceutical companies' feedback was included. Handbooks were distributed among MS neurologists by the German MS Society. Evaluation followed applying a mixed methods approach with interviews, focus groups and surveys. One survey addressed persons with MS (pwMS) based on a questionnaire included in each handbook. Neurologists who received printed patient handbooks were invited to give feedback in a second survey. RESULTS: Eight handbooks were developed providing absolute and relative risk information in numbers and figures as well as monitoring needs and drug fact boxes. Despite the high amount of information and the display of low absolute risk reduction rates of treatments, handbooks were overall appreciated by pwMS (n=107) and mostly also by physicians (n=24). For more than 70% of the pwMS the information was new, understandable and supportive for decision making. But patients felt uncomfortable with relative risk information. However, response rates in the evaluation were low, exposing the challenges when implementing EBPI into clinical care. Therefore, conclusions must be considered preliminary. CONCLUSION: EBPI on immunotherapies for MS seem feasible and are appreciated by patients and treating neurologists but more implementation research is needed.

Oral administration of a chymotrypsin-labile peptide--a new test of exocrine pancreatic function in man (PFT).

One gram N-benzoyl-L-tyrosyl PABA was orally administered to 24 controls, 15 patients with chronic exocrine pancreatic disease, 13 patients after an attack of acute pancreatitis, two patients with gluten-sensitive enteropathy, and 10 patients with biliary tract disease, peptic ulcer, or other pathology of the gastrointestinal tract. In the presence of chymotrypsin, PABA is split from the peptide and excreted in the urine. The amount of PABA excreted serves as a parameter of exocrine pancreatic function. In 51 patients, exocrine pancreatic secretion was also assessed by the Lundh test. In the control group a mean of 59-6 +/- 12-2% (mean +/- 2 SD) of the peptide-PABA was excreted over a period of six hours. PABA excretion in exocrine pancreatic deficiency was significantly less (P less than 0.001) than in controls. With one exception no overlap of data was noted. In the group with exocrine pancreatic deficiency, a significant relationship was shown between the PFT and the Lundh test. Reproducibility in duplicate test was excellent. The present data justify further investigations of this procedure as a possible new oral test of exocrine pancreatic function.

[First experiences with a new oral human pancreas function test with special emphasis on gastric voiding]. / Erste Erfahrungen mit einem neuen, oralen Pankreasfunktionstest beim Menschen unter besonderer Berücksichtigung der Magenentleerung

1 g of N--benzoyl-L-tyrosyl-PABA was administered orally to 50 test persons, i.e. controls and patients with known pancreatic disease. In the presence of chymotrypsin, paraaminobenzoic acid (PABA) is split from the peptide and excreted in the urine. The amount of PABA excreted serves as parameter of exocrine pancreatic function. In the control group a mean of 59.2 +/- 6.2% of the peptide PABA was excreted over a period of 6 h. PABA excretion in exocrine pancreatic deficiency was significantly less (p less than 0.001) than in controls. No overlap of data was noted. Gastric emptying rate - estimated by using indium-113m microcolloid - did not appear to influence urinary PABA excretion.