Coming dissertations at MedFak
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A growing concern : Online access to minors’ health records
Link: http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-542493
Healthcare worldwide is undergoing a transition where patients are increasingly granted access to their electronic health records (EHRs). However, online record access (ORA) for vulnerable groups like children and adolescents remains a topic of active debate. Minors’ experiences of patient-accessible electronic health records (PAEHRs) and related ethical questions remain underexplored.
The thesis aim was to explore stakeholder experiences of online access to minors’ EHRs, through six papers: 1) a case study comparing minors’ and guardian use of PAEHRs in Sweden and Finland and the use of country-specific access control practices; 2) a literature review summarising knowledge about stakeholder views and experiences on ORA for minors and parents; 3-4) two survey studies examining Swedish adolescents’ reasons for reading EHRs, utility, the link between use frequency and encouragement, as well as views on EHR security and privacy, attitudes toward information-sharing, and definitions of sensitive information; and 5-6) two mixed-methods studies exploring the views, awareness and benefits and risks with respect to ORA regulations among Swedish adolescents with serious health issues, their parents, and paediatric oncology HCPs. Findings were analysed using a framework of biomedical ethical principles.
Adolescents in Finland, who receive ORA earlier, showed higher PAEHR use than their Swedish counterparts. In Sweden, few applications for extended access were found. Most prior work was US-based that left minors’ experiences, especially beyond chronic illness, largely underexplored. Swedish adolescent portal users viewed information as useful and higher use was related to HCP encouragement. Although security was rated highly, many wished to manage who could access their EHRs. Mental healthcare was the most cited as sensitive. Adolescents with serious health issues, their parents, and oncology HCPs criticised the current gap in ORA during adolescence. Parents were concerned about early adolescent ORA, while HCPs worried about the impact of parental ORA on EHR quality, and lacked knowledge of access extension.
In conclusion, while ORA showed potential for engaging adolescents in their care early and facilitating parental support, risks remain for EHR quality. Education and dialogue among stakeholders, along with addressing HCP concerns, are essential efforts to make ORA an effective tool for enhancing adolescent health outcomes.
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Characterization of differences in clinical parameters and extracellular matrix composition between bicuspid and tricuspid aortic valves : How this can be used to predict outcome and to develop new treatment strategies
Link: http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-541638
Bicuspid aortic valve (BAV) is the most common congenital heart disease with an estimated prevalence of 0.5-1.4% in the general population. The condition increases the risk of a number of complications, with aortic stenosis (AS) being the most common, and close to 70% of all patients with a BAV require aortic valve replacement (AVR) during their lifetime.
In study I, 271 consecutive patients (152 BAV AS and 119 tricuspid aortic valve (TAV) AS) with severe AS underwent surgical AVR (SAVR). Preoperative echocardiography revealed that BAV AS patients had more pronounced preoperative systolic and diastolic dysfunction, despite being younger and having less comorbidities than tricuspid aortic valve (TAV) AS patients. Furthermore, the incidence of postoperative HF was higher BAV AS patients, while all-cause mortality during follow-up was similar for BAV AS and TAV AS patients.
In study II, 227 consecutive patients (133 BAV AS and 94 TAV AS) with severe AS underwent SAVR. The incidence of postoperative atrial fibrillation (POAF) and its association to preoperative left atrial (LA) reservoir strain was investigated. The incidence of POAF was similar for BAV AS and TAV AS patients, but there was a significant interaction between aortic valve morphology and LA reservoir regarding POAF. Furthermore, BAV AS patients had a higher incidence of persisting POAF and cumulative ischemic stroke incidence during follow-up after SAVR.
In study III, the incidence of new-onset conduction disturbances (new-onset third-degree atrioventricular (AV) block or new-onset left bundle-branch block (LBBB)) was retrospectively investigated in 1147 patients (589 BAV AS and 558 TAV AS) with severe AS that underwent SAVR. The incidence of new-onset conduction disturbances was higher in BAV AS patients. New-onset LBBB was associated with a worse long-term prognosis after SAVR. Bicuspid patients with fusion of the right- and the non-coronary cusps were at greatest risk of developing postoperative conduction disturbances.
In study IV, aortic valve tissue was collected from 88 patients who underwent aortic valve surgery. Proteomic analyses of the excised valves showed that the extracellular matrix (ECM) composition in BAV and TAV patients differs significantly. The ECM of BAV patients is abundant with fibrosis markers, while the ECM of TAV patients is abundant with inflammatory markers.
In conclusion, this thesis demonstrates that BAV AS and TAV AS patients are two distinct patient categories with different clinical characteristics that translates into different risks of postoperative complications.
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BK polyomavirus infection after kidney transplantation : Risk factors, viral transmission and immune response
Link: http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-540825
BK polyomavirus (BKPyV) is a significant cause of graft impairment or graft loss following kidney transplantation. BKPyV often causes asymptomatic infection during childhood, after which the virus establishes latency in the uroepithelial cells of the urinary tract. Seroprevalence in adults exceeds 90%. When the immune system is suppressed, the virus may reactivate and cause serious complications such as BKPyV-associated nephropathy (BKPyVAN) with the risk of permanent damage to the kidney. BKPyVAN affects 1-10% of all kidney transplant recipients.
There is currently no effective antiviral treatment against BKPyV. Tapering of immunosuppression, with the increased risk of rejection, is often the only option. Therefore, many transplant centres screen for BKPyV DNAemia after kidney transplantation. Since frequent screening is resource-intensive, it would be of clinical benefit to better predict who will be affected by BKPyV infection and BKPyVAN to more accurately target the screening.
The overall aim of this thesis was to identify risk factors for development of BKPyV to increase the precision of the diagnosis and to improve the clinical outcome in kidney transplant recipients.
In both a retrospective and a prospective study we found that male sex was a risk factor for BKPyVAN or high-level BKPyV DNAemia and in the prospective study we also identified older recipient age as a risk factor.
The incidence was approximately equal in both studies, 4.7% and 4.9%, respectively, despite the fact that screening for BKPyV had been introduced before the second study. It is likely that we found more BKPyV infections after the screening was introduced and also that they were found earlier.
In the prospective study most BKPyV infections were identified to be of donor origin. There was a higher risk of the recipient developing BKPyV infection if the donor had viruria in connection with the transplant. In addition, there was a higher risk of developing BKPyV infection if the donor had high BKPyV antibody levels at transplantation and if the donor and recipient were serologically mismatched.
When analysing immunological markers, a low CD4/CD8 ratio and a positive immune risk profile (CD4/CD8 ratio <1 and CMV seropositivity) in the recipient before transplantation were identified with increased risk of developing BKPyV infection.
In conclusion, this thesis has provided further insight into general and immunological risk factors for development of BKPyV infection after kidney transplantation and knowledge that is of benefit to improve BKPyV screening in the future.