Living with inflammatory bowel disease - Health-related quality of life, worries, and stress

Background: Patients with inflammatory bowel disease have a number of worries and concerns related to the disease, and in comparison with a general population their health-related quality of life is impaired. These patients need disease-related information and education. However, it remains unclear how this information should be provided in order to decrease their worries and concerns, and improve their healthrelated quality of life. Disease activity is one of the most important factors for reduced health-related quality of life. Therefore it is also important to assess more information about trigger factors for relapses in inflammatory bowel disease. Aim: The general aim of this thesis was to gain scientific evidence about worries and concerns, health-related quality of life, and trigger factors for relapses, and to develop and evaluate an education programme. Method: In all four studies the patients included were diagnosed with inflammatory bowel disease, and in remission. In Study I, 93 patients were included and randomized to an intervention group or a control group. The intervention group attended a groupbased education programme. Health-related quality of life was measured at baseline and after six months, by using four questionnaires. The intervention group also completed the questionnaires after one month. In Study II, 197 patients were included and divided into a Crohn’s disease group and an ulcerative colitis group. Each group was also divided into separate groups according to whether the patients had short disease duration or long disease duration. Health-related quality of life was measured using four questionnaires. In Study III, a sample of 195 patients was included. They filled in the RFIPC, and two other questionnaires measuring health-related quality of life. Confirmatory factor analysis was performed to validate the factor structure in the Swedish version of the RFIPC and to examine fit of different hypothesized models of factor structure. In Study IV, 60 patients were included. They filled in a structured diary daily during six months in order to collect information about symptoms and potential trigger factors, such as perceived stress. Results: No difference could be found in health-related quality of life between patients with ulcerative colitis and Crohn’s disease. Scores of health-related quality of life were lower for patients with short disease duration than for patients with long disease duration. Patients with Crohn’s disease and short disease duration had the lowest health-related quality of life. After attending an education programme, an improvement was found in the intervention group when measurements were made after one month. After six months, no improvement could be shown in health-related quality of life when comparing the intervention group with the control group. The RFIPC is the most appropriate choice when measuring health-related quality of life, worries and concerns. Using the single-factor model (sum score) displayed poor fit indices. The factorial structure of the RFIPC, as suggested in the original version, could be replicated with a slight modification in the Swedish version and showed the most adequate fit. Perceived stress can act as a trigger for relapses in inflammatory bowel diseases. A high level of perceived stress was found to have an effect when stratifying level of stress. High level of stress one day increased the risk of relapse the next day. Conclusion: CD patients with short disease duration have the greatest need of education and support. No improvement could be seen in health-related quality of life after attending an education programme. The separate factors in RFIPC provide more detailed information about patients’ disease-related worries and concerns in both research and clinical settings. This may help healthcare professionals to provide each patient with the appropriate education and support. Identification of trigger factors for relapses in inflammatory bowel disease also makes it possible to influence the trigger. By extension, this could decrease the number of relapses and improve health-related quality of life

Where To From Here? The Potential for Climate Change-Related Migration: What is the State of the International Approach to the Potential Problem of Climate Change-Related Migration, and what Contribution does Hodgkinson, Anderson, Burton and Young's Proposed Climate Change Displaced Persons Convention Make to the International Approach?

Climate change may be a relatively new phenomenon, but its effects are being felt throughout the world and having a significant impact on peoples’ lives in many countries. Some of those most keenly feeling the effects live in areas that are particularly vulnerable to destabilizing factors acting in conjunction with existing challenges. The effects of climate change are an exacerbating factor in sometimes already difficult lives. In some areas, the effects of climate change are or may become such that the inhabitants contemplate migration to find a more viable life elsewhere, either in their own country or in another country. It is by no means guaranteed that the effects of climate change will inexorably lead people, such as those in low-lying small island states, to migrate outside their country, particularly if there are adequate measures taken to mitigate and adapt to the effects of climate change. However, it is becoming increasingly clear that the potential for climate change-related migration is drawing near, if it has not already arrived, as a factor for some people’s decisions to migrate internally or externally. Some work currently underway considers approaches to dealing with climate change-related migration and the possible related issues around human rights protections and practical management. Climate change is an amorphous, complex and politically challenging issue for governments and stakeholders to deal with. Its effects on peoples’ lives can be significant, especially in conjunction with existing development, environmental, and economic challenges. It is important to ensure that any approach created is necessary, in light of existing mechanisms and available resources, and that it does not disadvantage any other groups of people through its creation or functioning. This thesis considers the state of the international approach to the potential problem of climate change-related migration. One recently developed approach was a proposed Climate Change Displaced Persons Convention, which has been formulated by Hodgkinson, Burton, Anderson and Young (2010). A range of information was considered to try and find a balance between the attempt to deal with climate change as a public and foreign policy issue and the human reactions and subsequent choices people make in dealing with the effects of climate change. Due to the complications of holding a position as a public servant working in the field of responses to climate change, I decided to use a methodology that would enable me to remain a step removed from the process, to avoid influencing responses. The thesis reviews current literature and experiences on climate change and migration, particularly in the Pacific, identifies key issues, and assesses the potential effectiveness of the Convention in addressing the issues identified. Information sources included drawing on reports of first hand experience of climate change related migration and those living in the front line on the islands, experiences of working in the public and NGO sectors, and academic considerations of how to address climate change and migration

Construct validity of EQ-5D-5L among patients with inflammatory bowel disease—a study based on real-world data from the Swedish Inflammatory Bowel Disease Registry

Abstract Objectives The Swedish Inflammatory Bowel Disease Registry (SWIBREG) includes approximately 84% of all patients with inflammatory bowel disease (IBD) treated with immunomodulators, biologics or surgery in Sweden. Data on health-related quality of life (HRQoL) have been collected using EQ-5D-5L in the registry since 2012. Nevertheless, there are few studies assessing the validity of EQ-5D-5L in this patient population. Thus, the aim of this study was to assess the construct validity of EQ-5D-5L amongst patients with IBD (ulcerative colitis and Crohn’s disease). Methods Individual-level data on EQ-5D-5L and other disease-specific measures were extracted from SWIBREG. Known-groups validity was assessed by analysing whether the EQ-5D-5L captured expected differences between patient groups with different activity levels of the disease. Convergent validity was assessed by analysing whether the reported problems in the dimensions of EQ-5D-5L, EQ VAS, and the EQ-5D-5L index value correlated, as hypothesized, with the four dimensions in the Short Health Scale, a symptom index question, and the Physician Global Assessment (PGA) score. Results In total, 9769 patients with IBD were included in the study. Patients with active IBD reported more health problems in the EQ-5D-5L descriptive system than patients being in remission. The effect sizes for the differences in reported problems between patients with active and inactive disease were at least small (≥0.1) or medium (≥0.3) in all dimensions except self-care. Differences in the mean EQ-5D-5L index and EQ-VAS score between patients with active and inactive disease were statistically significant (p 0.08 for the index and >11.0 for EQ-VAS). The analysis of convergent validity showed that EQ-5D-5L results correlated as expected with the disease-specific measures in 16 of the 21 analyses. In total, 22 (79%) of the 28 hypotheses were supported. Conclusion The findings support the construct validity of EQ-5D-5L amongst patients with IBD and contribute to the scarce literature on the validity of the five-level version of EQ-5D in this patient population. These findings have important implications for the choice of HRQoL measure in routine health care registries like SWIBREG as well as for future clinical or health economic studies considering using EQ-5D-5L as a measure of HRQoL

Development of a Core Outcome Set for Real-world Data in Inflammatory Bowel Disease: A European Crohn’s and Colitis Organisation [ECCO] Position Paper

The utility of real-world data is dependent on the quality and homogeneity of reporting. We aimed to develop a core outcome set for real-world studies in adult patients with inflammatory bowel disease [IBD]. Candidate outcomes and outcome measures were identified and categorised in a systematic review. An international panel including patients, dietitians, epidemiologists, gastroenterologists, nurses, pathologists, radiologists, and surgeons participated in a modified Delphi consensus process. A consensus meeting was held to ratify the final core outcome set. A total of 26 panellists from 13 countries participated in the consensus process. A total of 271 items [130 outcomes, 141 outcome measures] in nine study domains were included in the first-round survey. Panellists agreed that real-world studies on disease activity should report clinical, endoscopic, and biomarker disease activity. A disease-specific clinical index [Harvey-Bradshaw Index, Partial Mayo Score, Simple Clinical Colitis Activity Index] should be used, rather than physician global assessment. In ulcerative colitis [UC], either the UC Endoscopic Index of Severity or the Mayo Endoscopic Score can be used, but there was no consensus on an endoscopic index for Crohn's disease, nor was there consensus on the use of the presence of ulcers. There was consensus on using faecal calprotectin and C-reactive protein. There was no consensus on the use of histology in real-world studies. A core outcome set for real-world studies in IBD has been developed based on international multidisciplinary consensus. Its adoption will facilitate synthesis in the generation of real-world evidence

Multidisciplinary Perinatal Care in IBD

Background and Aims: Patients with inflammatory bowel disease [IBD] are often affected during their reproductive years and may have many perinatal queries that require the comprehensive perspectives of a multidisciplinary team [MDT]. The purpose of this topical review is to assess the scientific evidence and provide expert opinion related to nutritional, psychological and supportive care of women and their infants throughout the prenatal, antenatal and infant periods. Methods: A consensus expert panel of a paediatrician, gastroenterologists, nurses and dietitians was convened by the European Crohn’s and Colitis Organisation. This panel critically reviewed literature related to the non-medical management of patients with IBD during preconception, pregnancy, the postnatal period and the first years of the infant’s life. Statements were developed using an e-Delphi process over two rounds and were confirmed when ≥80% of experts agreed with the statements. Results: A total of 19 current practice positions were developed that cover the preconception period, pregnancy and lactation, and early-life exposures associated with risk of IBD. Development of the infant microbiome and its role in the immune system and topics including nutritional optimization, psychological support and education relating to early life were reviewed. Conclusions: Patients with IBD have unique nutritional and psychosocial needs that may affect fertility and pregnancy outcomes. The early-life environment of infants born to parents with IBD may be associated with subsequent development of IBD in offspring. An MDT is the optimal setting to support and counsel patients throughout the perinatal period