Integrated IT tools for the management and exploitation of European paediatric transplantation data

This thesis was developed with the aim of building and implementing new informatic tools that could facilitate research and international benchmarking in paediatric transplantation. Two different studies were created for that purpose. The first one consisted on an analysis of the current paediatric transplantation activity situation in the European Union, utilizing Google My Maps to obtain a general geographical distribution per countries, and Data Studio to complement the previous one and get more complete results. The second method was the construction of a patient registry for TransplantChild, the European Reference Network for paediatric transplantation, so that all the transplanted children in the member hospitals are registered, and their information is stored together to be analysed. The results obtained give an accurate vision of the unequal transplantation distribution across the continent and allowed the identification of the most expert and specialized centres in Europe. Also, it was possible to recognize potential cases in which the child needed to be moved to receive a transplant, and proposed solutions for them. On the other hand, two platforms, one for data collection and one for data exploitation, were integrated together to build up the patient registry. The latter was developed from scratch in this project using Python and Flask. At last, it was concluded that by implementing the mentioned tools it is possible to promote paediatric transplantation research and perform a benchmarking across the countries and hospitals. Hence, this turns out to be an indirect way to improve transplants success rate and, in the end, patients’ survival and quality of life.Ingeniería Biomédic

Minimising impairment: Protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy.

BACKGROUND: Upper limb orthoses are frequently prescribed for children with cerebral palsy (CP) who have muscle overactivity predominantly due to spasticity, with little evidence of long-term effectiveness. Clinical consensus is that orthoses help to preserve range of movement: nevertheless, they can be complex to construct, expensive, uncomfortable and require commitment from parents and children to wear. This protocol paper describes a randomised controlled trial to evaluate whether long-term use of rigid wrist/hand orthoses (WHO) in children with CP, combined with usual multidisciplinary care, can prevent or reduce musculoskeletal impairments, including muscle stiffness/tone and loss of movement range, compared to usual multidisciplinary care alone. METHODS/DESIGN: This pragmatic, multicentre, assessor-blinded randomised controlled trial with economic analysis will recruit 194 children with CP, aged 5-15 years, who present with flexor muscle stiffness of the wrist and/or fingers/thumb (Modified Ashworth Scale score =1). Children, recruited from treatment centres in Victoria, New South Wales and Western Australia, will be randomised to groups (1:1 allocation) using concealed procedures. All children will receive care typically provided by their treating organisation. The treatment group will receive a custom-made serially adjustable rigid WHO, prescribed for 6 h nightly (or daily) to wear for 3 years. An application developed for mobile devices will monitor WHO wearing time and adverse events. The control group will not receive a WHO, and will cease wearing one if previously prescribed. Outcomes will be measured 6 monthly over a period of 3 years. The primary outcome is passive range of wrist extension, measured with fingers extended using a goniometer at 3 years. Secondary outcomes include muscle stiffness, spasticity, pain, grip strength and hand deformity. Activity, participation, quality of life, cost and cost-effectiveness will also be assessed. DISCUSSION: This study will provide evidence to inform clinicians, services, funding agencies and parents/carers of children with CP whether the provision of a rigid WHO to reduce upper limb impairment, in combination with usual multidisciplinary care, is worth the effort and costs. TRIAL REGISTRATION: ANZ Clinical Trials Registry: U1111-1164-0572

The construct of the ethical activity profile of nurse managers – effectiveness of the Ethics Quarter e-learning intervention

Nurse managers’ ethical activities have a positive impact on personnel, the quality of patient care and overall organizational success. The aim of this two-phase study was to create the theoretical construct of the ethical activity profile of nurse managers (NMs) and to evaluate the effectiveness of the ethics educational intervention Ethics Quarter (EQ). The goal was to support the ethical activity profile of NMs by producing an effective ethics intervention for the use of healthcare organizations. In the first, theoretical phase of this study, a literature review and a nationwide cross-sectional survey were done to create and analyse the construct of the ethical activity profile of NMs (n=122). In the second, intervention phase of this study, the available instruments to evaluate the ethical activity profile were reviewed and modified, and new ones were developed. Furthermore, literature reviews were done to describe ethics interventions and e-learning method for the NMs. Finally, an ethics educational e-learning intervention, the EQ, was developed and implemented using a randomized controlled trial design among NMs (n=341). The effectiveness of the EQ was evaluated using five different instruments at three different measurement points. In addition, the usability and feasibility of the EQ were assessed. The methods of analysis used in this study were critical appraisal, content analysis, descriptive statistics, and statistical modelling. This study provided a new theoretical construct, the ethical activity profile of NMs, and a new way of supporting it, the ethics educational e-learning intervention, the EQ. The results showed that the EQ was effective in strengthening the primary outcome, the ethical activity profile of NMs, i.e. 1) developing one’s own ethics knowledge, 2) influencing ethical issues, 3) conducting or implementing ethics research, 4) identifying, and 5) solving ethical problems. Furthermore, the usability and feasibility of the EQ were confirmed. Nursing management education and healthcare organizations would benefit from applying the EQ to support the ethical activity profile of NMs. Further studies are needed to understand how different kinds of organizational ethics support forms affect the behaviour of NMs and thus, clinical nursing in health care.Hoitotyön johtajien eettinen aktiivisuusprofiili – Etiikan Vartti- intervention vaikuttavuus Hoitotyön johtajien eettiset aktiviteetit vaikuttavat positiivisesti henkilöstöön, hoidon laatuun ja organisaation kokonaismenestykseen. Tämän kaksivaiheisen tutkimuksen tarkoituksena oli luoda käsite hoitotyön johtajien eettinen aktiivisuusprofiili ja arvioida Etiikan Vartti (EV) -intervention vaikuttavuutta. Tavoitteena oli tukea hoitotyön johtajien eettistä aktiivisuusprofiilia tuottamalla tehokas etiikan interventio terveydenhuollon organisaatioiden käyttöön. Tutkimuksen ensimmäisessä, teoreettisessa vaiheessa toteutettiin kirjallisuuskatsaus ja maanlaajuinen poikkileikkaustutkimus, joissa luotiin käsite hoitotyön johtajien (n=122) eettinen aktiivisuusprofiili ja analysoitiin sitä. Tutkimuksen toisessa, interventiovaiheessa tarkasteltiin, modifioitiin ja kehitettiin uusia mittareita, joilla voitiin arvioida hoitotyön johtajien eettistä aktiivisuusprofiilia. Lisäksi toteutettiin kirjallisuuskatsaukset, joissa kuvattiin etiikan interventioita ja verkkokoulutusmenetelmää hoitotyön johtajille. Lopulta kehitettiin etiikan verkkokoulutusinterventio, Etiikan Vartti (EV), joka implementoitiin satunnaistetussa kontrolloidussa asetelmassa hoitotyön johtajille (n=341). EV:n vaikuttavuutta arvioitiin viidellä eri mittarilla kolmessa eri mittauskohdassa. Myös EV:n käytettävyyttä ja soveltuvuutta arvioitiin. Analyysimenetelminä käytettiin kriittistä arviointia, sisällön analyysiä, kuvailevia tilastollisia menetelmiä ja tilastollista mallintamista. Tämä tutkimus tuotti uuden teoreettisen käsitteen, hoitotyön johtajien eettisen aktiivisuusprofiilin, ja uuden tavan tukea sitä, etiikan verkkokoulutuksen, EV:n. Tulokset osoittivat, että EV oli tehokas vahvistamaan päätulosmuuttujaa, hoitotyön johtajien eettistä aktiivisuusprofiilia, eli 1) oman eettisen osaamisen kehittämistä, 2) eettisiin asioihin vaikuttamista, 3) eettisen tutkimuksen tekemistä tai käyttöönottoa, 4) eettisten ongelmien tunnistamista ja 5) eettisten ongelmien ratkaisemista. Lisäksi EV:n käytettävyys ja soveltuvuus varmistuivat. Hoitotyön johtamisen koulutus ja terveydenhuollon organisaatiot hyötyisivät EV:n käytöstä hoitotyön johtajien eettisen aktiivisuusprofiilin tukemisessa. Lisätutkimusta tarvitaan, jotta voidaan ymmärtää, miten erilaiset organisaatioeettiset tukimuodot vaikuttavat johtajien käytökseen ja näin kliiniseen hoitotyöhön

Coping with Vicarious Trauma in Mental Health Interpreting

This research explores coping strategies used by American Sign Language (ASL) interpreters who work in mental health settings. Due to the highly emotional nature of such assignments, interpreters are at an increased risk for experiencing vicarious trauma. This study also investigates the available training regarding vicarious trauma in current interpreter education. Previous research has typically recognized the need for self-care and focused on general suggestions for coping; the present work uses firsthand accounts from practicing interpreters. To uncover interpreters’ personal experiences, the researcher created an online survey that resulted in 222 qualifying responses. Of the total number of respondents, 83% expressed that they have experienced vicarious trauma as the result of interpreting in mental health settings. However, 58% reported that they have not received any training related to managing the emotional impact of such interpreting assignments. Debriefing was chosen as the most utilized strategy (80%), but was also identified by some interpreters as a potential breach of confidentiality. While some interpreters have refined their own self-care routines, there is still a significant gap in educating interpreters about managing the adverse effects of vicarious trauma

The surgical management of uterine prolapse and the role of mesh

Background Uterine prolapse is a common condition that impairs quality of life. Vaginal hysterectomy with apical suspension is the standard treatment, yet associated with a high risk of recurrent prolapse. Laparoscopic sacrohysteropexy offers an alternative approach, resuspending the uterus utilising non-absorbable mesh. However, supporting evidence is low quality and mesh use is controversial. Predicting postoperative bladder function remains challenging, and patients’ postoperative health concerns remains unexplored within academic literature. Aim Determine the safety and efficacy of laparoscopic sacrohysteropexy. Understand the role of urodynamic studies for bladder dysfunction. Explore women’s health concerns following the procedure. Methods Cross-sectional study to determine the incidence of mesh associated complications. Randomised controlled trial comparing vaginal hysterectomy to laparoscopic sacrohysteropexy. Retrospective cohort study to compare preoperative urodynamic diagnoses to postoperative bladder symptoms. Thematic analysis exploring health concerns in women following laparoscopic sacrohysteropexy. Results Following laparoscopic sacrohysteropexy, the incidence of reoperation for mesh associated complications is 0.4% of from a cohort of 1,121 women at an average four years postoperatively. The randomised controlled trial with 101 participants showed a non-significant trend towards a lower rate of apical reoperation following sacrohysteropexy as compared to vaginal hysterectomy (6.1% versus 17.2% p = 0.17 ) at seven years. Only a preoperative urodynamic diagnosis of voiding dysfunction is significantly associated with such symptoms postoperatively. The principal focus for women following the procedure are their pelvic floor symptoms and associated quality of life. Conclusion Laparoscopic sacrohysteropexy appears to be associated with a low risk of mesh associated complications requiring reoperation. It may confer anatomical and recurrent prolapse associated benefits as compared to vaginal hysterectomy. Preoperative urodynamic diagnoses appear to correlate poorly with postoperative bladder function, yet diagnosing stress incontinence may alter surgical management. Despite ongoing media coverage and debate about mesh, this is not the focus of women who have had mesh augmented surgery

THE EFFECT OF HAPTOGLOBIN PHENOTYPES ON MARKERS OF NEUROINFLAMMATION IN PATIENTS WITH ANEURYSMAL SUBARACHNOID HEMORRHAGE

Aneurysmal subarachnoid hemorrhage (aSAH) is a severe form of hemorrhagic stroke resulting from the spontaneous rupture of an intracranial aneurysm and release of oxygenated blood into the subarachnoid space. In the United States alone, aSAH occurs in approximately 30,000 patients each year and occurs, primarily, in otherwise healthy adults, frequently without warning. Sadly, approximately 40% of patients with aSAH will die in the first 30 days. Of those who survive, only about 75% will be able to live semi-independently again and only about 60% will be able to return to work. Delayed brain injuries (DBI), which may affect up to 70% of aSAH patients, are an important cause of these devastating outcomes. DBI include delayed cerebral vasospasm (DCV) and delayed cerebral ischemia (DCI). Despite intensive research, effective preventative and treatment therapies for DBI have not been identified, in part due an incomplete understanding of their pathophysiology. Although a number of mechanisms have been proposed, a strong correlation between DBI and inflammatory mediators has been most frequently observed, suggesting an important role of inflammation in the development of DBI. Because intracranial blood is a key feature of aSAH, haptoglobin (Hp) has emerged as a potential patient-specific modifier of DBI risk. Hp is a naturally occurring acute phase reactant that binds to free hemoglobin (Hb) molecules to facilitate Hb metabolism by circulating macrophages. In humans, there are 3 different Hp phenotypes, Hp1-1, Hp1-2 and Hp2-2. Recent clinical observations suggest that different Hp phenotypes affect the incidence of DBI after aSAH. While the mechanism for this observation remains unknown, one potential explanation is that Hp may alter the neuroinflammatory response, reflected in plasma, CSF, or parenchymal concentrations of pro-inflammatory cytokines. Macrophage CD163 binds Hp-Hb complexes and a free-floating version of CD163, termed soluble CD163 (sCD163), can also be isolated from plasma and other body tissues in response to stress and as a result of inflammatory injury. The relationship between sCD163 and different Hp phenotypes is unknown but sCD163 may also have an important role in modulating DBI risk after aSAH. The objective of this dissertation, therefore, is to investigate the hypothesize that the different haptoglobin phenotypes modify the risk of DBI through a differential effect on sCD163 and inflammatory cytokines. To achieve this objective, three specific aims were completed and are described in detail in this dissertation. First, a prospectively collected aSAH biobank was established at the University of Kentucky. This biobank was necessary to facilitate current and future observational aSAH studies. Second, using data and patient samples from the established biobank, plasma and CSF concentrations of 3 different neuroinflammatory cytokines were determined at pre-specified time points and compared against Hp phenotype, clinical outcome, and DBI diagnoses. Finally, using data and patient samples from the established biobank, plasma and CSF concentrations of sCD163 was determined at pre-specified time points and were also compared against Hp phenotype, clinical outcome, and DBI diagnoses. The proposed biobank successfully recruited 25 patients over a 2-year period. Of these patients, 3 (12%) were Hp1-1 phenotype, 14 (56%) were Hp1-2 phenotype, and 8 (32%) were Hp2-2 phenotype. There were no statistically significant differences in plasma or CSF concentrations of any of the measured cytokines at any time point when subjects were compared by their DCV status, DCI status, Hp phenotype, Hp class, or a combination of Hp class and DCV or DCI. While there were significant differences in plasma sCD163 concentration when subjects were compared by a combination of Hp class and DCV, there were no other statistically significant differences in plasma or CSF concentration of sCD163 at any time point when subjects were compared by their DCV status, DCI status, Hp phenotype, Hp class, or a combination of Hp class and DCV or DCI. These findings are most likely related to the relatively small number of patients included in these analyses. Future studies should include more patients to better evaluate the roles that the different Hp phenotypes play in the development of DBI after aSAH