The Disease Severity Index for Inflammatory Bowel Disease Is a Valid Instrument that Predicts Complicated Disease.

BACKGROUND: The disease severity index (DSI) for inflammatory bowel disease (IBD) combines measures of disease phenotype, inflammatory activity, and patient-reported outcomes. We aimed to validate the DSI and assess its utility in predicting a complicated IBD course. METHODS: A multicenter cohort of adults with IBD was recruited. Intraclass correlation coefficients (ICCs) and weighted Kappa assessed inter-rater reliability. Cronbach's alpha measured internal consistency of DSI items. Spearman's rank correlations compared the DSI with endoscopic indices, symptom indices, quality of life, and disability. A subgroup was followed for 24 months to assess for a complicated IBD course. Area under the receiver operating characteristics curve (AUROC) and multivariable logistic regression assessed the utility of the DSI in predicting disease progression. RESULTS: Three hundred and sixty-nine participants were included (Crohn's disease [CD], n = 230; female, n = 194; mean age, 46 years [SD, 15]; median disease duration, 11 years [interquartile range, 5-21]), of which 171 (CD, n = 99; ulcerative colitis [UC], n = 72) were followed prospectively. The DSI showed inter-rater reliability for CD (ICC 0.93, n = 65) and UC (ICC 0.97, n = 33). The DSI items demonstrated inter-rater agreement (Kappa > 0.4) and internal consistency (CD, α > 0.59; UC, α > 0.75). The DSI was significantly associated with endoscopic activity (CDn=141, r = 0.65, P < .001; UCn=105, r = 0.80, P < .001), symptoms (CDn=159, r = 0.69, P < .001; UCn=132, r = 0.58, P < .001), quality of life (CDn=198, r = -0.59, P < .001; UCn=128, r = -0.68, P < .001), and disability (CDn=83, r = -0.67, P < .001; UCn=52, r = -0.74, P < .001). A DSI of 23 best predicted a complicated IBD course (AUROC = 0.82, P < .001) and was associated with this end point on multivariable analyses (aOR, 9.20; 95% confidence interval, 3.32-25.49). CONCLUSIONS: The DSI reliably encapsulates factors contributing to disease severity and accurately prognosticates the longitudinal IBD course.

This study shows that the disease severity index (DSI) for inflammatory bowel disease (IBD) is a valid and reliable instrument encapsulating the disease phenotype, disease activity, and impact of the disease on the patient; and it accurately predicts for incident disease complications.

IBD barriers across the continents: a continent-specific analysis - Australasia.

Australasia, encompassing Australia, New Zealand, and Papua New Guinea, has some of the highest prevalence's of inflammatory bowel disease (IBD) in the world. The way IBD medicine is practiced varies between and within these countries. There are numerous shared issues of IBD care between Australia and New Zealand, whereas Papua New Guinea has its' own unique set of circumstances. This review looks to explore some of the barriers to IBD care across the continent from the perspective of local IBD healthcare professionals. Barriers to IBD care that are explored include access to IBD multidisciplinary teams, provision of nutritional-based therapies, the prevalence and engagement of IBD-associated mental health disorders, access to medicine, access to endoscopy, rural barriers to care, Indigenous IBD care and paediatric issues. We look to highlight areas where improvements to IBD care across Australasia could be made as well as address research needs.

"I Don't Have to be Sick to Still Be Worthy": The Barriers Experienced by Adolescent and Young Adult Cancer Survivors in New Zealand.

Purpose: To identify the spectrum and nature of survivorship barriers experienced by New Zealand's adolescent and young adult (AYA) cancer survivor population. In addition, we explore associations between survivorship barriers and sociodemographic characteristics, cancer type, and day-to-day happiness following the end of treatment. Methodology: Participants were recruited for the online survey from AYA cancer service patient databases. Eligibility criteria included: aged 12-24 years at diagnosis, diagnosed between 2010 and 2019, and completed treatment at least one year prior. The analysis focused on 11 barriers (domains, issues, or concerns) which respondents may have faced during survivorship. Results: Two hundred and eighteen AYA survivors participated in the study. The mean number of impactful survivorship barriers was 2.5 (standard deviation 1.7), with 13 respondents (6.0%) reporting no barriers of concern and 31 (14.2%) reporting 5 or more. A higher number of impactful barriers was associated with lower day-to-day happiness (r = -0.34, p ≤ 0.001). The most commonly identified impactful survivorship barriers were mental health (50.0% of respondents), physical health (43.1%), thinking and memory (33.0%), education and work (27.1%), social life (26.1%), and fertility (22.5%). Subgroup analysis identified significant differences according to gender, age at diagnosis, tumor group, ethnicity, and time since diagnosis. Poor access to health care and unmet needs were common themes. Positive impacts, particularly with regards to family relationships, were also identified. Conclusion: These results will inform initiatives to improve AYA survivorship care in New Zealand. Gaps in service delivery and funding will need to be overcome by utilizing innovative strategies and broad sector engagement.

Analysis of Medicine Prices in New Zealand and 16 European Countries.

OBJECTIVE: To compare prices of medicines, both originators and generics, in New Zealand and 16 European countries. METHODS: Ex-factory price data as of December 2012 from New Zealand and 16 European countries were compared for a basket of 14 medicines, most of which were at least partially funded by the state in the 17 countries. Five medicines had, at least in some countries, generic versions on the market whose prices were also analyzed. Medicine price data for the 16 European countries were provided by the Pharma Price Information service. New Zealand medicine prices were retrieved from the New Zealand Pharmaceutical Schedule. Unit prices converted into euro were compared at the ex-factory price level. RESULTS: For the 14 medicines surveyed, considerable price differences at the ex-factory price level were identified. Within the European countries, prices in Greece, Portugal, the United Kingdom, and Spain ranked at the lower end, whereas prices in Switzerland, Germany, Denmark, and Sweden were at the upper end. The results for New Zealand compared with Europe were variable. New Zealand prices were found in the lowest quartile for five medicines and in the highest quartile for seven other products. Price differences between the originator products and generic versions ranged from 0% to 90% depending on the medicine and the country. CONCLUSIONS: Medicine prices varied considerably between European countries and New Zealand as well as among the European countries. These differences are likely to result from national pricing and reimbursement policies.

The social context of childcare practices and child malnutrition in Niger's recent food crisis.

In 2004-05, Niger suffered a food crisis during which global attention focused on high levels of acute malnutrition among children. In response, decentralised emergency nutrition programmes were introduced into much of southern Niger. Child malnutrition, however, is a chronic problem and its links with food production and household food security are complex. This qualitative, anthropological study investigates pathways by which children are rendered vulnerable in the context of a nutritional 'emergency'. It focuses on household-level decisions that determine resource allocation and childcare practices in order to explain why practices apparently detrimental to children's health persist. Risk aversion, the need to maintain self-identity and status, and constrained decision making result in a failure to invest extra necessary resources ingrowth-faltering children. Understanding and responding to the social context of child malnutrition will help humanitarian workers to integrate their efforts more effectively with longer-term development programmes aimed at improving livelihood security.

Saving lives, preserving livelihoods: understanding risk, decision-making and child health in a food crisis.

The purpose of this paper is to analyse household decision-making regarding resource allocation in the aftermath of a food crisis in rural Niger. International attention had resulted in humanitarian agencies launching emergency nutrition programmes to alleviate persistently high levels of acute child malnutrition. We conducted participant observation, 93 in-depth interviews, 15 focus groups, 44 feeding and illness histories for children under 5, and debriefing sessions with local humanitarian staff. The impetus for this study came from observations of marked intra-household differences in child growth and health status, despite the caregivers' ethos of treating children equally. Egalitarian input, however, does not always result in equal outcomes: vulnerable children become "victims of non-discrimination" through a form of benign neglect engendered by pervasive poverty. The ethos and practices of equal investment in children are rooted in a need to balance the perceived risks to children with the preservation of long-term livelihoods. We discuss the mismatch of views between external interventions, which focus on saving individual children's lives, and local priorities, aimed at spreading risk. This mismatch is rooted in the different ways in which humanitarian agencies and local communities weigh up risks and vulnerabilities in matters of child health.