Children with juvenile idiopathic arthritis frequently experience interruptions to their medical therapy.

AIM: To study real-life experiences of drug treatment discontinuations and safety in a well-defined cohort of patients with juvenile idiopathic arthritis (JIA), over an eleven-year period in Uppsala County, Sweden. METHODS: Clinical charts of all incident and prevalent cases of juvenile arthritis were reviewed prospectively by an experienced paediatric rheumatologist. Each patient file was supplemented retrospectively regarding hereditary diseases, clinical data and aspects of pharmacological treatment. RESULTS: Severe adverse events from methotrexate or biological agents were rare, but 84 occasions of interrupted therapy due to adverse events or inefficacy were identified within 225 treatment periods (37.3%) in the 156 patients (108 girls and 48 boys) studied. The median observation period was 8.6 years after disease onset (minimum 1.33, maximum 17.5 years). Oral and subcutaneous methotrexate caused adverse events in 22.6% of the treatment periods and biological agents in 19.2% (p = 0.71). Discontinuation of treatment periods was equally common for methotrexate (38.7%) and biological agents (33.3%) (p = 0.53). CONCLUSION: Our study shows a high percentage of interrupted medical therapies, due to adverse events or inefficacy, in children with JIA. Adverse events from methotrexate and biological agents were seldom severe. The results highlight the need for better predictive factors to guide therapy.

Microscopic colitis in Uppsala health region, a population-based prospective study 2005-2009.

OBJECTIVE: The aim of this study is to report on the incidence of microscopic colitis (MC), any possible relation with inflammatory bowel disease (IBD), concomitant drug consumption, related diseases and the clinical course of the diseases. METHODS: Both new cases of IBD and MC were registered at the same time in the same geographical area. The study started in the county of Uppsala 2005-2006, and other parts of the surrounding health region were included 2007-2009. Established morphological criteria were used, i.e. a layer of subepithelial collagen band ≥ 10 µm in collagenous colitis (CC) with concomitant inflammation and at least 20 lymphocytes per 100 epithelial cells in lymphocytic colitis (LC). RESULTS: The authors found 272 new cases of MC, 154 with CC and 118 with LC. The mean age-adjusted incidence was 7.0/1,000,000 for CC and 4.8/100,000 for LC. The clinical course was dominated by single episodes with diarrhea or intermittent symptoms, but 14% suffered from chronic diarrhea. In 10% of the cases, diagnosis was made in individuals without chronic watery diarrhea. Although not systematically tested, concomitant celiac disease was found in approximately 5% of the patients. CONCLUSIONS: The incidence of MC in Uppsala health region is similar to other studied areas. The majority of patients had a self-limiting or easily treated condition, but 14% need a more or less continuous medication. Ten percent of the patients demonstrate other symptoms than chronic watery diarrhea. The possibility of concomitant celiac disease should be considered in new cases of MC.

Views and experiences on the use of voice assistants by family and professionals supporting people with cognitive impairments.

The use of voice assistants (e.g., Amazon Alexa, Google Home) is being widely advocated as part of supporting people living with dementia at home. The development of this technology is largely driven by industry, and there is little research to determine how family carers and professionals use voice assistants with people with dementia. This paper presents the findings from further analysis of data from two studies: Study 1-a qualitative study that aimed to explore the views and expectations of family carers and professionals who use voice assistants to support people with a cognitive impairment at home, and Study 2-a qualitative enquiry aiming to identify the views and barriers on using voice assistants by family carers of people with dementia and professionals, together with a pilot case study evaluating a prototype that addresses barriers identified during the enquiry, entitled IntraVox. Based on processing of smart home sensor data, IntraVox uses a personalised human voice to send prompts and reminders to end-users to conduct daily life activities and to activate smart home processes using voice assistants. The results of the qualitative studies indicate that family carers and professionals use voice assistants in their caring role for home automation, skills maintenance and development, prompts and reminders, behaviour and environment monitoring, and for leisure and social interaction support. The findings also show that family carers and professionals have specific challenges that need to be overcome for them to realise the benefits that may be gained through the use of voice assistants within technology enabled care. The pilot case study also provided a useful demonstration that interoperability can be achieved to enable exchanges between IntraVox and voice assistants, with the aim of providing customised and personalised technological solutions that address some of the barriers that people with dementia and their carers face in the use of this technology.

Anemia in a population-based IBD cohort (ICURE): still high prevalence after 1 year, especially among pediatric patients.

BACKGROUND: Prevalence of anemia in patients with inflammatory bowel disease (IBD) is uncertain because of scarcity of population-based studies. The aim of this study was to evaluate prevalence of anemia in a population-based cohort of newly diagnosed patients with IBD to identify risk factors for anemia and to describe contemporary anemia-specific treatment during the first year. METHODS: All patients with ulcerative colitis or Crohn's disease in the IBD Cohort of Uppsala Region cohort (n = 790) and hemoglobin levels at the time of diagnosis were eligible for inclusion. The WHO definition of anemia was used. RESULTS: Seven hundred forty-nine (95%) of the patients with IBD were included. Five hundred eighty of 749 (77%) patients had measured hemoglobin levels at 12-month follow-up. The prevalence of anemia at the time of diagnosis was 227/749 (30%). After 1 year, it was 102/580 (18%). Anemia was more common among newly diagnosed patients with Crohn's disease compared with ulcerative colitis (42% versus 24%, P < 0.0001), but after 1 year, there was no difference (18% versus 18%, P = NS). Children had more often anemia compared with adults, both at diagnosis and after 1 year (diagnosis: 55% versus 27%, P < 0.0001; follow-up: 28% versus 16%, P < 0.05). Anemia was associated with colonic engagement in Crohn's disease and the extent of inflammation in ulcerative colitis. Only 46% of patients with anemia were treated with iron supplementation or blood transfusion. CONCLUSIONS: The overall prevalence of anemia in patients with IBD at the time of diagnosis was high. A large proportion was still anemic after 1 year. Children were more at risk compared with adults. More efforts are needed to treat patients with anemia.

Incidence and clinical course of Crohn's disease during the first year - results from the IBD Cohort of the Uppsala Region (ICURE) of Sweden 2005-2009.

BACKGROUND AND AIMS: As a part of the Swedish ICURE study where the epidemiological results of ulcerative colitis and microscopic colitis recently have been published, we hereby present the corresponding figures for Crohn's disease. METHODS: All patients diagnosed with Crohn's disease in Uppsala County (305,381 inhabitants) were prospectively registered during 2005-2006 and the same for all new patients with Crohn's disease in Uppsala Region (642,117 inhabitants) during 2007-2009. RESULTS: 264 patients with Crohn's disease were included. The mean annual incidence was 9.9/100,000/year (95% CI: 7.1-12.6). Incidence among children <17 years was 10.0/100,000/year (95% CI: 3.8-16.3). 51% of the patients had ileal involvement (L1: n=73, 28%. L2: n=129, 49%. L3: n=62, 23%, L4: n=47, 18%) and 23% had a stricturing or penetrating disease (B1: n=204, 77%. B2: n=34, 13%. B3: n=26, 10%. p: n=27, 10%). Intestinal resection rate during the first year was 12.5%. Patients with complicated disease had longer symptom duration before diagnosis compared to patients with non-complicated disease (median months 12.0, IQR: 3.0-24.0 vs 4.0, IQR: 2.0-12.0, p=0.0032). Patients 40 years or older had an increased risk for surgery (HR: 2.03, 95% CI: 1.01-4.08, p=0.0457). CONCLUSIONS: The incidence of Crohn's disease in a region of Sweden is one of the highest reported in Europe. Long symptom duration precedes stricturing or penetrating behaviour. Old age is an independent risk factor for surgery.

Incidence and natural history of ulcerative colitis in the Uppsala Region of Sweden 2005-2009 - results from the IBD cohort of the Uppsala Region (ICURE).

BACKGROUND AND AIMS: The incidence of ulcerative colitis (UC) increased during the 20th century in Western Europe and the North America, but there are conflicting reports whether the incidence has declined, stabilized or continued to increase. The aim of this study was to evaluate the incidence of UC in the Uppsala Region, Sweden. METHODS: All new UC patients in Uppsala County (305,381 inhabitants) were prospectively registered during 2005-2006 and the same for all new UC patients in the Uppsala Region (642,117 inhabitants) during 2007-2009. The extent and severity of disease according to the Montreal classification, relapse rates and surgery were assessed. RESULTS: 526 UC patients were included. The mean overall incidence for the time period was 20.0 (95% CI: 16.1-23.9) cases per 100,000 inhabitants. The incidence among children <17 years of age was 8.9 per 100,000. The extent at diagnosis was evenly distributed (E1: n=167, 32%, E2: n=161, 31%, E3: n=163, 31%). Half of the cases had moderate to severe symptoms (S1: n=269, 51%, S2: n=209, 40%, S3: n=45, 8.6%). 228 (43%) relapsed and 13 (2.5%) required colectomy during the first year. Children had a higher proportion of extensive disease vs adults (27/42 vs 136/484), but no increased risk for severe symptoms or colectomy. CONCLUSION: In this prospective population-based study we found one of the highest incidences of UC in the world. The proportion of severe cases is comparable with historical data. The conclusion is that the nature of UC has not changed, only the incidence.