Status report from Norway: Implementation of patient involvement in Norwegian health care.

Norway has traditionally high standards regarding civil rights particularly emphasizing equal access to societal resources including health care. This background and the health care system's centralized national organization make it perfectly suited for implementation of shared decision making (SDM). In recent years, great efforts have been made by policy- makers, regional health authorities and not least the patients to facilitate a process of change in health communication culture. SDM is currently even given highest priority in health care strategies on all system levels. SDM has been structurally implemented, e.g. by including corresponding guidance in the standard patient pathways. Moreover, SDM is established as an element of service on the national health portal hosting a constantly increasing number of decision aids. Essentially the Norwegian Knowledge Center for Health Services contributes by searching and providing information for use in decision aids. Implementation is now being rolled out unit by unit for a list of medical problems as a series production of SDM using decision aids and health professional training. Importantly, production of SDM begins and succeeds as a soundly structured communication with both clinical environments and patients. However, as communication training has not been implemented before now, there are no data demonstrating sufficient realization of SDM in current health care. Beyond making reasonable use of scientific achievements, the Norwegian movement's secret of success is the simultaneous commitment of all actors of the health system to a common idea.

PET-CT in the sub-arctic region of Norway 2010-2013. At the edge of what is possible?

BACKGROUND: It is challenging to obtain a similar access to positron emission tomography/computed tomography (PET-CT) within the whole region served. In the subarctic and arctic region of Norway, significant distances, weather conditions and seasonable darkness have been challenging when the health care provider has aimed for a high quality PET-CT service with similar availability to all inhabitants. METHODS: The PET-CT service at the University Hospital of North Norway (UNN) was established in May 2010. The glucose analogue tracer fluorine-18 fluorodeoxyglucose (FDG) was delivered from Helsinki, Finland. An ambulatory PET-CT scanner was initially employed and a permanent local one was introduced in October 2011. In March 2014, we analysed retrospectively all data on the PET-CT exams performed at the Section of Nuclear Medicine, Department of Radiology during a 32 months time period 2010-13. The following patient data were recorded: gender, age, diagnosis, residence and distance of travelling. There were in total 796 exams in 706 patients. RESULTS: Four hundred sixty-one PET-CT exams per million inhabitants were, on average, performed per year. Lung cancer (32.7%), malignant melanoma (11.3%), colorectal cancer (10.9%) and lymphoma (9.7%) constituted two-thirds of all exams. Three-fourths were males and the median age was 63.5 years (range 15.2-91.4 years). The access to PET-CT exam varied within the region. The southern county (Nordland) experienced a significantly less access (p < 0.0001) to the regional service. Except for malignant melanoma, this finding was observed in all major cancer subgroups. In colorectal cancer and lymphoma a lower consumption of PET-CT was also observed in the northeastern county (Finnmark). Patients' mean distance of travelling by car (one way) was 373 km (median 313 km, range 5-936 km). CONCLUSION: PET-CT was not similarly available within the region. Especially, inhabitants in the southern county experienced less access to the regional service. National and regional standards of care, new scanners and improved collaboration between hospital trusts may alter this situation.

Nationwide improvement of rectal cancer treatment outcomes in Norway, 1993-2010.

BACKGROUND: The Norwegian Rectal Cancer Project was initated in 1993 with the aims of improving surgery, decreasing local recurrence rates, improving survival, and establishing a national rectal cancer registry. Here we present results from the Norwegian Colorectal Cancer Registry (NCCR) from 1993 to 2010. MATERIAL AND METHODS: A total of 15 193 patients were diagnosed with rectal cancer in Norway 1993-2010, and were registered with clinical data regarding diagnosis, treatment, locoregional recurrences and distant metastases. Of these, 10 796 with non-metastatic disease underwent tumour resection. The results were stratified into five time periods, and the treatment outcomes were compared. Recurrence rates are presented for the 9785 patients who underwent curative major resection (R0/R1). RESULTS: Among all 15 193 patients, relative five-year survival increased from 54.1% in 1993-1997 to 63.4% in 2007-2010 (p < 0.001). Among the 10 796 patients with stage I-III disease who underwent tumour resection, from 1993-1997 to 2007-2010, relative five-year survival improved from 71.2% to 80.6% (p < 0.001). An increasing proportion of these patients underwent surgery at large-volume hospitals; and 30- and 100-day mortality rates, respectively, decreased from 3.0% to 1.4% (p < 0.001) and from 5.1% to 3.0% (p < 0.011). Use of preoperative chemoradiotherapy increased from 6.5% in 1993 to 39.0% in 2010 (p < 0.001). Estimated local recurrence rate after major resection (R0/R1) decreased from 14.5% in 1993-1997 to 5.0% in 2007-2009 (p < 0.001), and distant recurrence rate decreased from 26.0% to 20.2% (p < 0.001). CONCLUSION: Long-term outcomes from a national population-based rectal cancer registry are presented. Improvements in rectal cancer treatment have led to decreased recurrence rates of 5% and increased survival on a national level.

[Acute intermittent porphyria]. / Akutt intermitterende porfyri.

BACKGROUND: Acute intermittent porphyria is an autosomal dominant disease caused by a mutation in the gene coding for the porphobilinogen deaminase enzyme in the haem biosynthesis. The prevalence varies geographically. MATERIAL AND METHODS: This article presents a literature-based review of acute intermittent porphyria with emphasis on epidemiology and diagnostic and therapeutic strategies. RESULTS: The 50% reduced activity of porphobilinogen deaminase enzyme found in heterozygote persons is sufficient for basal conditions, but during attacks, stimulation of haem synthesis upstream produces toxic spillover products that give a purple colour to the urine. Many causes: common drugs, alcohol, starvation, pregnancy or menstruation, can lead to attacks of abdominal pain, motor and/or sensory polyneuropathy autonomic dysfunction, hyponatraemia, mental changes and seizures. Hepatic carcinoma may develop in older patients with acute intermittent porphyria. Acute attacks are treated with glucose or haem arginate intravenously. Preliminary results indicate a prevalence of 600/100,000 for acute intermittent porphyria in the municipality of Saltdal in Norway compared to 1-2/100,000 in Europe generally. A W198X mutation is found in the porphobilinogen deaminase enzyme gene in members of a family in Saltdal, shared by some families in northern Sweden. INTERPRETATION: The high prevalence of acute intermittent porphyria in specific geographic areas emphasizes the importance of correct diagnosis, the first crucial step in avoiding attacks and associated diseases.