The social position of adolescents and young adults with chronic digestive disorders

A chronic digestive disorder can be accompanied by -sometimes embarrassing- symptoms and complaints, such as pain, lack of energy, flatulency or incontinence, which can affect the social position of patients. In addition, diet commitments, or worries about toilet facilities can have a serious impact on social activities. The present study was conducted to provide a basis for preventive interventions in order to support young patients in their development with a maximum of equal possibilities in society. Central to this thesis is the impact of being diagnosed with a chronic digestive disorder, such as an inflammatory bowel disease (IBD), chronic liver disease, congenital digestive disorder, coeliac disease or food allergy, on the social position of adolescents and young adults. Secondly, it was aimed to investigate whether the type of disease and disease burden characteristics imply risk factors for possible difficulties in the social position. In addition, the contribution of coping was studied. The study was conducted within a theoretical framework (based on the Disablement process model of Jette and Verbrugge, 1994) which is presented in chapter one. On the basis of this model, the following research questions formed the starting-point of this thesis: 1) Do various chronic digestive disorders, i.e. IBD, chronic liver diseases, congenital digestive disorders, coeliac disease and food allergy, have a negative impact on the social position of adolescents and young adults? Which specific aspects of the social position are negatively affected by a chronic digestive disorder? 2) How can the burden of a chronic digestive disorder in adolescents and young adults be described, in terms of daily manifestations, compared to population controls? 3) Does burden of disease constitutes a risk factor for school performance and leisure activities of adolescents and young adults with chronic digestive disorders? 4) Does burden of disease constitutes a risk factor for the labour market position of young adult patients with chronic digestive disorders? 5) Do coping strategies differ between several diagnostic groups and population controls? Do they differ between various age groups? 6) Does the use of coping strategies contribute to school performance and leisure activities of adolescents and young adults with chronic digestive disorders? In total 758 patients, categorized in five diagnostic groups, and 306 population-based controls in the age of 12 to 24 years participated in the study. Details on the background of this study, on the recruitment procedures for patients and controls and on the measurement methods can be found in chapter one. The research questions are successively studied in the following chapters. In addition, one chapter pays attention to the factor structure of the Coping Inventory for Stressful Situations (CISS-21) because it was used in a younger target group than it originally was developed for. Finally, chapter seven discusses the main results. In this chapter, a strength and weakness analysis of this study is given as well, followed by a summary of the most significant conclusions. The chapter closes with recommendations for physicians, for patients and their parents, as well as for future research

Complexity and involvement as implementation challenges:results from a process analysis

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Identifying patient safety research priorities in Estonia: results of a Delphi consensus study

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Reducing work pressure and IT problems and facilitating IT integration and audit & feedback help adherence to perioperative safety guidelines: a survey among 95 perioperative professionals

Background: To improve perioperative patient safety, guidelines for the preoperative, peroperative, andpostoperative phase were introduced in the Netherlands between 2010 and 2013. To help the implementation ofthese guidelines, we aimed to get a better understanding of the barriers and drivers of perioperative guidelineadherence and to explore what can be learned for future implementation projects in complex organizations.Methods: We developed a questionnaire survey based on the theoretical framework of Van Sluisveld et al. forclassifying barriers and facilitators. The questionnaire contained 57 statements derived from (a) an instrument formeasuring determinants of innovations by the Dutch Organization for Applied Scientific Research, (b) interviewswith quality and safety policy officers and perioperative professionals, and (c) a publication of Cabana et al. Thetarget group consisted of 232 perioperative professionals in nine hospitals. In addition to rating the statements on afive-point Likert scale (which were classified into the seven categories of the framework: factors relating to theintervention, society, implementation, organization, professional, patients, and social factors), respondents wereinvited to rank their three most important barriers in a separate, extra open-ended question.Results: Ninety-five professionals (41%) completed the questionnaire. Fifteen statements (26%) were considered tobe barriers, relating to social factors (N = 5), the organization (N = 4), the professional (N = 4), the patient (N = 1),and the intervention (N = 1). An integrated information system was considered an important facilitator (70.4%) aswell as audit and feedback (41.8%). The Barriers Top-3 question resulted in 75 different barriers in nearly allcategories. The most frequently reported barriers were as follows: time pressure (16% of the total number ofbarriers), emergency patients (8%), inefficient IT structure (4%), and workload (3%).Conclusions: We identified a wide range of barriers that are believed to hinder the use of the perioperative safetyguidelines, while an integrated information system and local data collection and feedback will also be necessary toengage perioperative teams. These barriers need to be locally prioritized and addressed by tailored implementationstrategies. These results may also be of relevance for guideline implementation in general in complex organizations.Trial registration: Dutch Trial Registry: NTR3568.Keywords: Guideline adherence, Implementation, Implementation barriers, Implementation facilitators, Patientsafety, Perioperative car

Increased adherence to perioperative safety guidelines associated with improved patient safety outcomes:a stepped-wedge, cluster-randomised multicentre trial

Background: National Dutch guidelines have been introduced to improve suboptimal perioperative care. A multifaceted implementation programme (IMPlementatie Richtlijnen Operatieve VEiligheid [IMPROVE]) has been developed to support hospitals in applying these guidelines. This study evaluated the effectiveness of IMPROVE on guideline adherence and the association between guideline adherence and patient safety. Methods: Nine hospitals participated in this unblinded, superiority, stepped-wedge, cluster RCT in patients with major noncardiac surgery (mortality risk >= 1%). IMPROVE consisted of educational activities, audit and feedback, reminders, organisational, team-directed, and patient-mediated activities. The primary outcome of the study was guideline adherence measured by nine patient safety indicators on the process (stop moments from the composite STOP bundle, and timely administration of antibiotics) and on the structure of perioperative care. Secondary safety outcomes included in-hospital complications, postoperative wound infections, mortality, length of hospital stay, and unplanned care. Results: Data were analysed for 1934 patients. The IMPROVE programme improved one stop moment: 'discharge from recovery room' (+16%; 95% confidence interval [CI], 9-23%). This stop moment was related to decreased mortality (-3%; 95% CI, -4% to -1%), fewer complications (-8%; 95% CI, -13% to -3%), and fewer unscheduled transfers to the ICU (-6%; 95% CI, -9% to -3%). IMPROVE negatively affected one other stop moment - 'discharge from the hospital' - possibly because of the limited resources of hospitals to improve all stop moments together. Conclusions: Mixed implementation effects of IMPROVE were found. We found some positive associations between guideline adherence and patient safety (i.e. mortality, complications, and unscheduled transfers to the ICU) except for the timely administration of antibiotics

Developing the University of Tartu in Estonia into a wellnetworked Patient Safety Research Centre (PATSAFE): A study protocol

Background: Patient safety (PS) is a serious global public health problem affecting all countries. Estimates show that around 10 percent of the patients are harmed during hospital care, resulting in 23 million disability-adjusted life years lost per year. Experts emphasize research advancements as a key precondition for safer care. Aim: The Patient Safety Research Centre (PATSAFE) project enhances the Institute of Clinical Medicine of the University of Tartu’s (ICM-UT) research potential and capacities in PS in order to improve and strengthen knowledge and skills in methods, techniques and experience for PS research. Methods: A strategic partnership with Avedis Donabedian Research Institute in Spain, and IQ Healthcare in the Netherlands, both international leaders in PS research, enables the development of a long-lasting knowledge exchange, allowing the ICM-UT to capitalise on its current achievements and to overcome gaps in scientific excellence in the field of PS research. These twining activities will strengthen and raise the research profile of the ICM-UT academic staff and early-stage researchers (ESRs), by implementing the hands-on training on methods, techniques, and experience in PS research. The project also encourages the active participation of early stage researchers in PS research by increasing their soft skills, to ensure the continuity and sustainability of PS research in ICM-UT. Finally, development of the research strategy on PS contributes to the long-term sustainability of PS research in Estonia. To implement these activities, PATSAFE foresees a comprehensive strategy consisting of knowledge exchange, soft research skills capacity building, strategic planning, and strong dissemination and exploitation efforts. Expected results: As a result of the project, ICM-UT will have the capacity to carry out PS research using the appropriate methodology and the competences to apply state-of-the-art evidence-based strategies for PS research

Knowledge and attitudes towards genetic testing: a two year follow-up study in patients with asthma, diabetes mellitus and cardiovascular disease

Adequate knowledge and personal attitudes towards DNA-testing are major determinants of optimal utilization of genetic testing. This study aims to (1) assess the genetic knowledge and attitude towards genetic testing of patients with asthma, diabetes mellitus type II and cardiovascular diseases, (2) determine whether their knowledge or attitude changed since 2002, and (3) investigate the predictive role of knowledge on attitude. Data were collected within the Panel of Patients with Chronic Diseases in 2002 and 2004, resulting in 398 data-pairs. Results show that factual knowledge mainly relates to associations between genes and diseases, less is known on associations between genes, chromosomes, cells and body. The perceived knowledge on DNA-testing has not increased since 2002. The attitude towards genetic testing also appeared to be rather consistent. Less perceived medical genetic knowledge and more perceived social genetic knowledge were found predictive for a more reserved attitude towards genetic testing. In conclusion, advanced developments in the field of genetics are not accompanied by increased knowledge of patients with common multi-factorial diseases. The finding that more perceived social genetic knowledge results in more reluctance can be considered an indicator for the necessity of social debates on genetic testing

Coping in adolescents and young adults with chronic digestive disorders: Impact on school and leisure activities

Coping strategies were compared across adolescents and young adults with several chronic digestive disorders and healthy peers, and across age groups. Subsequently, the impact of coping on performance in school and leisure activities was investigated. Participants were adolescents and young adults (age 12 to 25 years) suffering from inflammatory bowel diseases (IBD), chronic liver diseases, congenital diseases, coeliac disease or food allergy (total n =521) and healthy controls ( n =274). For comparison reasons, a generic coping measuring instrument was employed: the shortened version of the Coping Inventory for Stressful Situations (CISS-21). The CISS-21 assesses three meta coping strategies: task-oriented, emotion-oriented and avoidance coping. Comparisons between several groups only revealed less use of coping strategies in the youngest adolescents. No differences were found among diagnostic groups, nor between diagnostic groups and control group. Coping was found to be related to school and leisure activities of adolescents and young adults with chronic digestive disorders