This research of teleconsultation services aims to improve the quality of diagnosis and treatment for rural cardiovascular patients through utilizing distant medical expertise. Equitable access to expert healthcare as well as improved medical management for these patients can assist in modifying cardiovascular disease (CVD) risk and reduce morbidity and mortality in Saudi Arabia. The objectives were to design and develop a new care pathway for cardiovascular disease patients by utilizing teleconsultation technology, investigate factors and issues that might act as barriers to its adoption, and then evaluate the impact of this model on the stakeholders. A small scale pilot project was used to determine the issues of technology, processes and human resources required to deliver an effective service with the context of the research setting. Four primary healthcare centres, two regional hospitals, fifteen patients and sixty other participant stakeholders were included in this study. An approach using (PCP) patient care pathways was used to introduce the teleconsultation technology and integrate it within the healthcare delivery system. Compared to the traditional PCP, the modified PCP utilising teleconsultation technology improved the quality of healthcare through:  Improved access to medical care and quality of diagnosis by obtaining the expertise of a distant specialist.  More efficient medical evaluation and management.  Enhanced role of primary healthcare centres and participating hospitals by providing all levels of health services for patients.  Evidence-based referral (reduced waiting time, reduced burden on outpatient clinics). The telconsultation adoption barriers included:  Inadequacy of finance  Limited infrastructure  Legal and regularity difficulties.  Organization issues.  Literacy on technology. This study recommends the following for telemedicine implementation in the country:  Promote perception and readiness for ICT services with the healthcare community.  Enhance structural readiness including appropriate infrastructure and adequate funding, human resources and equipment.  Proactive policies to encourage growth of the telecommunication sector and to address concerns regarding privacy and security.

Healthcare utilizations are typically measured independently of each other; neglecting the interdependencies between services. An episode of care is suitable for measuring healthcare utilizations of patients with complex health conditions because it tracks all contacts throughout the healthcare system. The overall goal of this research was to construct an episode of care data system to study healthcare utilizations and costs of chronic obstructive pulmonary disease (COPD) exacerbations. To achieve this goal, four related studies were undertaken. The first study (Chapter 2) evaluated the agreement between emergency department (ED) data and hospital records for capturing transitions between the two care settings. Using the κ statistic as a measure of concordance, we found good agreement between the two data sources for intra-facility transfers; but only fair agreement for inter-facility transfers. The results show that linking multiple data sources would be important to identify all related healthcare utilization across care settings. The second study (Chapter 3) linked hospital data, ED data, physician billing claims, and outpatient drug records to construct an episode of care data system for COPD patients. Latent class analysis was used to identify COPD patient groups with distinct healthcare pathways. Pathways were associated with outcomes such as mortality and costs. A few individuals followed complex pathways and incurred high costs. Building on the previous study, the next one (Chapter 4) predicted whether high-cost patients in one episode also incurred high costs in subsequent episodes. Using logistic regression models, we found that patient information routinely collected in administrative health data could satisfactorily predict those who become persistent high users. The final study (Chapter 5) used a cross-validation approach to compare the performance of eight alternative linear regression models for predicting costs of episodes of COPD exacerbations. The results indicate that the robust regression model, a model not often considered for cost prediction, was among the best models for predicting episode-based costs. Overall, this research demonstrated how population-based administrative health databases could be linked to construct an episode of care data system for a chronic health condition. The resulting data system supported novel investigations of healthcare system-wide utilizations and costs. / May 2016

L’insuffisance cardiaque est une pathologie chronique fréquente et grave, dont l’évolution est émaillée de décompensations qui nécessitent généralement une hospitalisation. Malgré des recommandations scientifiques claires (traitement de l’étiologie et des comorbidités, traitement symptomatique précoce des décompensations, traitement de fond pour les cas à fraction d’éjection diminuée), l’organisation du système de santé ne favorise pas la délivrance optimale des soins recommandés. On constate en effet dans la littérature que la délivrance des soins, ainsi que le contenu des soins délivrés, sont très variables d’un environnement à l’autre, avec un impact sur le risque de réhospitalisation. L’amélioration de la qualité des soins nécessite donc de pouvoir décrire les modalités de délivrance et le contenu des soins, c’est-à-dire le parcours de soins. Les méthodes de description de ces parcours sont rares et non consensuelles. L’objectif de cette thèse est de proposer des méthodes de description des parcours de soins, dans l’ambition de proposer des aides à la prise de décision en clinique et en santé publique. Deux études sont réalisées sur deux bases très différentes : une base de données médico-administrative ambulatoire et hospitalière à l’échelle d’une région, et une base de données clinique hospitalière monocentrique. Ces deux études mettent en évidence, à l’aide d’une classification ascendante hiérarchique sur composantes principales, des groupes de patients aisément interprétables. En particulier, elles montrent chacune deux groupes dont les caractéristiques cliniques sont proches, mais dont la prise en charge est très différente ; une prise en charge peu intense est associée à une évolution défavorable. La méthodologie utilisée dans ces études est discutée à la lumière de la littérature, et les opportunités offertes par les résultats en termes de recherche, de pratique clinique, et de santé publique, sont explorées. / Heart failure is a frequent and serious chronic pathology, whose evolution is peppered with decompensations that usually require hospitalization. Despite clear scientific recommendations (treatment of etiology and co-morbidities, early symptomatic treatment of decompensations, specific treatment for cases with decreased ejection fraction), the organization of the health system does not promote optimal delivery of recommended care. The literature reports that the delivery of care, as well as the content of delivered care, vary widely from one environment to another, with an impact on the risk of rehospitalization. Therefore, improving the quality of care needs to describe the delivery modalities and the content of care, that is to say, the care pathway. The methods of describing these pathways are rare and non-consensual. The aim of this thesis is to propose methods for describing care pathways, with the aim of offering support for clinical and public health decision-making. Two studies are carried out on two very different bases: an ambulatory and hospital medico-administrative database on a regional scale, and a monocentric clinical hospital database. These two studies highlight, using a hierarchical ascending classification on principal components, easily interpretable groups of patients. In particular, they each show two groups whose clinical characteristics are similar, but whose management is very different; a low level of care is associated with an poor prognosis. The methodology used in these studies is discussed in light of the literature, and the opportunities offered by the findings in terms of research, clinical practice, and public health are explored.

Syftet med föreliggande studie var att ta reda på vårdpersonal och närståendes upplevelser vad gäller vanlig palliativ vård och strukturerade vårdplaner så som LCP/ICP. Studien genomfördes som en systematisk litteraturstudie där underlaget inhämtades genom att med specifika sökord söka i Högskolan Dalarnas databas ELIN@ efter vetenskapliga artiklar. En artikel har även sökts från en annan referenslista där artikelnamnet använts som sökord. Vid sökningarna har sökorden använts var för sig och i kombination med varandra varvid 13 stycken artiklar valdes ut till resultatet. Resultatet visade att det fanns brister i den ordinarie palliativa vården vad det gäller kommunikation, symtomlindring och anhörigvård. Tidsbrist och stress var också utmärkande i den ordinarie palliativa vården. Vad gäller patienter som vårdats under LCP/ICP så upplevde närstående och vårdpersonal att både kommunikation och symtomkontroll var avsevärt bättre än i den ordinarie palliativa vården. Tiden för det goda samtalet fanns i betydligt större utsträckning vid vård under LCP/ICP. En orsak var att sjuksköterskan istället för att lägga ner tid på dokumentationen hade möjlighet att vara där för patienten och dess närstående. De närstående hade också möjlighet att vara delaktiga i vården på grund av att de hade tillgång till dokumentationen kring patienten.

This master thesis covers the palliative care in a hospice and a hospital. A lot of seriously ill patients suffering from incurable diagnoses die in hospitals. Therefore the nursing staff come into a close contact with patients near the end of their life.The nurses are in a close contact with the patients. The nurses sense emotions and suffering of dying patients. They sense also feelings of patients in case when improper cure and treatment are applied. Taking care of dying patients is stressing situation. The care covers not only the patient himself but it also includes the communication with the patients´ family and later the bereaved families.The hospital environment is primarily targeted to acute care. The palliative care is at the periphery. In The Czech Republic the palliative care is emerging in hospices mainly. That is the reason why the hospices may serve as a source of inspiration for improvements of the palliative care in other medical institutions.The first part of the theory section describes the main principles of a palliative care. The next part deals with mutual relations between the dying patient, the disease, between the nurse and the family and relatives of the dying patient. The last part deals with the ethical problems in the dying patients nursing, describes the environment where the palliative care is provided and researches the palliative care standards. There are three main goals of the work. The first goal is to compare the level of palliative care standards in different types of medical institutions. The second goal is to evaluate the possibility of providing of the palliative care in the different types of the medical institutions. The third goal is to suggest possibility of the hospital palliative care improvements according to results of the surveys.In the research part an analysis of written documents was performed. The quantitaive part of the research used an anonymous survey. We created two surveys to perform the research. The first survey was targeted to the nursing management and their view of the palliative care provided in the different types of medical institutions.The survey was distributed to 238 relevant medical institutions by electronic means. It consists 6 questions. 3 of them were closed questions, remaining 3 were semiclosed. The survey was opened by 78 respondents of different institutions. 26 respondents took part and finished the survey. According to answers of 26 nursing managers 18 of them agreed to cooperate further and participate in more detailed survey targeted on the nurses who work directly with patients and provide the palliative care. The second survey consisted of 26 questions and 13 of them were closed and 13 semiclosed. The survey was finished by 150 respondents from different medical institutions: hospitals, long term care hospitals and hospices. The data of the both surveys were statistically evaluated.We established 4 hypothesis. H1: The presence of palliative standard depends on the type of medical institution. The hypothesis is valid. H2: The palliative care standards are focused mainly on the basic physical needs providing and less to the spiritual and psycho-social needs providing. The hypothesis was not sufficiently proven. H3: The possibility to provide palliative care by nursing staff depends on the type of medical institution. The hypothesis is valid. H4: From the point of view of nursing staff the palliative care providing depends on the environmental conditions. The answers of the nursing staff take us to the conclusion that the environment influences providing the palliative care. The results of the research shows, that the palliative standards in the medical institutions exist. The standards are focused mainly on providing basic physical needs. There is an evidence that the quality palliative care can be provided in case when the conditions are adequate.

Introduction: Macroscopic hematuria is an important alarm symptom of cancer in theurinary tract. One single episode in patients over the age of 50 fulfills the criteria for referralto the standardized care pathway. Several patients included in the pathway with a negativeresult of the investigation will return with recurrent macroscopic hematuria for repeatinvestigation. Aim: To evaluate the diagnostic yield of repeat investigation in patients presenting withrecurrent macroscopic hematuria after a previous negative investigation and to estimate theincidence of false negative investigations in the standardized care pathway for cancer in theurinary tract. Material and Methods: A retrospective review of medical records was performed at theDepartment of Urology in Örebro County, including all patients investigated in thestandardized care pathway for cancer in the urinary tract during 2016 with a negative result ofthe investigation. Individuals with repeat investigation were identified. Results of theseinvestigations and the time interval between investigations were documented. Results: Repeat investigation was performed in 96 out of 627 patients (15.3%). Two (2.1%)were diagnosed with cancer, at a time interval from initial investigation of 4 and 27 months,respectively. Other results were benign urological conditions (n = 62) and normalinvestigations (n = 30). Conclusions: It appears that few tumors are missed when macroscopic hematuria isinvestigated in the standardized care pathway. We observed a very low number of newlydiagnosed cancers after repeat investigation of recurrent macroscopic hematuria. A moreselective approach regarding repeat investigations should be considered.

BACKGROUND: In India, an estimated 200,000 congenital heart defects are diagnosed each year but only 50 pediatric cardiac health centers exist with capacity to perform pediatric cardiac surgeries (PCS). Majority of the centers are private and have high cost of care. Hrudaya Foundation, a non-profit, was started to cover in-hospital costs of pediatric cardiac surgery for poor families. For the study, risk factors of post-operative infection (major outcome of PCS) were evaluated and gaps in care faced by Hrudaya Foundation patients were identified. METHODS: To identify risk factors associated with POI, retrospective cohort study was conducted. Medical records and foundation notes of 1028 interventional CATH and open heart surgery patients were examined. Chisq tests and logistic regressions on socio-economic and clinical factors were run to identify risk factors of POI for open heart surgery patients. The study also tested associations of patients’ community characteristics with pre-operative conditions and POI, like lack of access to improved latrines, distance to hospital, under & unemployment rate, and maternal illiteracy rates. To identify gaps in care, the study collected and analyzed interviews with 11 staff and 27 parents. The semi-structured interviews focused on care pathway from birth to post-discharge follow-up, financial obstacles, and an asset assessment. RESULTS: Pediatric open heart surgery patients had a 19% post-operative infection rate and a 5% mortality rate. Post-operative infections were significantly associated with age of 12 months and under, severely underweight, history of prior cardiac intervention, high risk surgery (RACHS-1 score 3 & 4), delayed sternal closure, and re-operation within same admission when the other risk factors were kept constant. POI did not have a statistically significant correlation with community level characteristics. The study found several gaps in care. Parents had difficulty getting a referral to affordable specialty cardiac care after diagnosis. Even after a referral to Hrudaya Foundation, parents still had to borrow large sums of money due to travel, lodging, and follow-up expenses. Financial constraints created barriers to maintain wellness before and after intervention. Most parents did not have consistent income and they were not aware of many assets in their communities. CONCLUSION: Patients with significant risk factors for POI should have more aggressive infection management. Though close to 41% of the sample were severely underweight, the risk factor was not recognized as actionable. Patients should get nutrition supplementation prior to surgery admission and parents should be notified of their child’s malnutrition status at discharge. Additionally, BPL parents need additional resource and system navigation assistance to reduce financial constraints and maintain their child’s follow-up care and nutrition. / 2021-05-12T00:00:00Z

Yes / Ninety-five percent of the population are estimated to carry at least one genetic variant that is discordant with at least one medication. Pharmacogenomic (PGx) testing has the potential to identify patients with genetic variants that puts them at risk of adverse drug reactions and sub-optimal therapy. Predicting a patient's response to medications could support the safe management of medications and reduce hospitalization. These benefits can only be realized if prescribing clinicians make the medication changes prompted by PGx test results. This review examines the current evidence on the impact PGx testing has on hospital admissions and whether it prompts medication changes. A systematic search was performed in three databases (Medline, CINAHL and EMBASE) to search all the relevant studies published up to the year 2020, comparing hospitalization rates and medication changes amongst PGx tested patients with patients receiving treatment-as-usual (TAU). Data extracted from full texts were narratively synthesized using a process model developed from the included studies, to derive themes associated to a suggested workflow for PGx-guided care and its expected benefit for medications optimization and hospitalization. A meta-analysis was undertaken on all the studies that report the number of PGx tested patients that had medication change(s) and the number of PGx tested patients that were hospitalized, compared to participants that received TAU. The search strategy identified 5 hospitalization themed studies and 5 medication change themed studies for analysis. The meta-analysis showed that medication changes occurred significantly more frequently in the PGx tested arm across 4 of 5 studies. Meta-analysis showed that all-cause hospitalization occurred significantly less frequently in the PGx tested arm than the TAU. The results show proof of concept for the use of PGx in prescribing that produces patient benefit. However, the review also highlights the opportunities and evidence gaps that are important when considering the introduction of PGx into health systems; namely patient involvement in PGx prescribing decisions, thus a better understanding of the perspective of patients and prescribers. We highlight the opportunities and evidence gaps that are important when considering the introduction of PGx into health systems. / This research was supported by the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). GS was supported by the National Institute for Health Research Leeds In vitro Diagnostics Co-operative. This manuscript presents independent research funded by Leeds Teaching Hospitals NHS Trust and the University of Bradford.

Abstract The aim of the thesis is to increase understanding about creation of value in health care. Value is created through knowledge processes in multiprofessional integrated care pathways (ICP) of childhood obesity and defined as health and well-being which benefits the patients, their families, health care organisations and society. An ICP is a practice among Finnish primary and special care which in this study is regarded as the value creating network. Knowledge processes take place in social networks of health professionals and families and information technology (IT) networks. The transdisciplinary study combines theories of Information Studies with theories of customer value in Business and Marketing research. The care and prevention of childhood obesity pursues permanent lifestyle changes through health counselling. Examination of value creation in networks based on knowledge processes has the potential to enhance health professionals’, patients’, and their families’ interaction in counselling. The qualitative case study involves the ICPs of two Finnish University Hospital districts. The empirical data, collected between 2009 and 2012, consists of semi-structured interviews of 30 health professionals in primary and special health care, of three children and their mothers, a family questionnaire (N=13), and care path instructions and memos of an ICP work group. The findings indicate that information practices and IT do not support knowledge processes and organisational learning in the ICP. Along with structural and IT-based boundaries in and between organisations, organisational culture confirms boundaries. Moreover, lack of time restricts the sharing of experiences. Knowing in health care is a complex phenomena; especially the care of childhood obesity appeared to include emotional aspects not addressed in previous research. Thus, the study contributes to theoretical knowledge by suggesting empathetic knowing to be included in the typology of knowing in the context of health care. Even if counselling was perceived well, it does not ensure permanent lifestyle changes. Actual value for the families is created in the everyday practices which should be supported by the environment. The theoretical framework can be tested further in similar constructions in health care organisations or in other ICPs to enhance Knowledge Management and value creation in health care. / Tiivistelmä Tutkimus pyrkii lisäämään ymmärrystä siitä, miten arvoa luodaan lasten lihavuuden hoitoketjun tietoprosesseissa moniammatillisessa yhteistyössä. Hoitoketju on perusterveydenhuollon ja erikoissairaanhoidon välille luotu käytäntö, jota tarkastellaan arvoa luovana verkostona. Arvolla tarkoitetaan hyötyä, joka syntyy potilaille, heidän perheilleen, terveydenhuolto-organisaatioille ja yhteiskunnalle. Tietoprosessit muodostavat arvoverkoston ammattilaisten ja perheiden sosiaalisten verkostojen sekä hoitoketjun tietoverkostojen kautta. Tieteidenvälinen tutkimus yhdistää informaatiotutkimuksen teorioita liiketalouden tutkimuksen teorioihin asiakasarvon luomisesta. Lasten lihavuuden tärkein hoito- ja ennaltaehkäisykeino on terveysneuvonta, joka pyrkii pysyviin elämäntapamuutoksiin. Tietoprosessien tarkastelu arvoverkostoina mahdollistaa ammattilaisten ja perheiden vuorovaikutuksen kehittämisen terveysneuvonnassa. Laadullinen tapaustutkimus toteutettiin kahdessa suomalaisessa yliopistollisessa sairaanhoitopiirissä. Aineisto kerättiin vuosina 2009–2012. Se koostuu 30 terveydenhuollon ammattilaisen, kolmen potilaan ja heidän äitiensä teemahaastatteluista, 13 perheen lomakekyselyvastauksista sekä hoitopolkuohjeistuksista ja kokousmuistioista. Tulokset osoittavat, että tietoverkot ja informaatiokäytännöt eivät tue tietoprosesseja ja organisaatioiden oppimista hoitoketjussa. Rakenteellisten ja informaatio- ja viestintäteknologian luomien rajojen lisäksi erilaiset organisaatiokulttuurit muodostavat esteitä tietoprosessien etenemiselle. Kiire estää kokemusten jakamista. Tietämys ja osaaminen terveydenhuollossa ovat moniulotteisia seikkoja. Tutkimus nostaa esille lasten lihavuuden hoitoon liittyvät tunteet, joita ei ole tarkasteltu aikaisemmissa tutkimuksissa. Siten tulokset täydentävät teoriataustana sovelletun tietämisen typologiaa empaattisen tietämisen tyypillä terveydenhuollon kontekstissa. Perheet kokivat terveysneuvonnan hyväksi, mutta vaikutukset pysyviin elämäntapamuutoksiin eivät nouse vahvasti esille. Hoidon arvo muodostuu perheiden jokapäiväisen elämän käytännöissä, mitä myös ympäristön tulisi tukea. Tutkimuksessa sovellettua teoriaa ja viitekehystä voidaan testata vastaavissa yhteistoimintahankkeissa ja hoitoketjuissa. Niiden avulla voidaan kehittää arvoa luovia tietoprosesseja ja tietojohtamista terveydenhuollossa.

Rationnel: La simulation en chirurgie colorectale laparoscopique (CCL) est peu évaluée & n'a jamais été analysée en parcours de soin. Objectifs: Etudier & développer 1 formation en parcours de soin simulé (FPSS) en CCL: patients virtuels en périopératoire & programme d'entrainement virtuel (PEV) peropératoire. Déterminer si cette FPSS améliore la prise en charge des malades. Méthodes: 1) Développement d'1 FPPS pour l'appendicite. Test de sa faisabilité auprès des internes d'un service de chirurgie & évaluation de son impact sur 38 patients admis pour appendicite avant (n=21) & après (n=17) FPSS. 2) Développement d'1 FPPS en CCL respectant les objectifs de réhabilitation précoce (ORP) & validation d'un PEV en CCL. Impact de sa mise en place auprès des internes d'un service, sur 20 patients inclus prospectivement avant (n=10) & après (n=10) FPSS.Résultats: 1) Tous les internes ont suivi la FPSS. Les données pré/peropératoires étaient comparables entre les 2 groupes patients. Les délais de réalimentation liquide & solide étaient réduits après FPSS (7h (2-20) vs. 4 (4-6); P = 0.004 & 17h (4-48) vs. 6 (4-24); P = 0.005) sans modifier la morbidité ni la durée d'hospitalisation (DH). 2) La participation des internes comme opérateur a augmenté après FPSS (0% (0-100) vs. 82.5% (10-100); P = 0.006). Les données pré/peropératoires étaient comparables entre les 2 groupes patients. Le respect des objectifs de RP était meilleur à J2 après FPSS (3 (30%) vs. 8 (80%); P = 0.035). La morbidité & la DH étaient inchangées. Conclusion: Une FPSS en CCL a montré sa faisabilité. Elle a amélioré le respect des ORP & augmenté la participation des internes sans altérer les suites opératoires. / Background: Few studies have assessed simulation in laparoscopic colorectal surgery (LCS) & simulation has never been designed in a care pathway approach (CPA) manner. Objectives: To design a CPA to training in LCS, involving virtual patients perioperative training & a virtual competency-based curriculum for intraoperative training. To implement such CPA & to look whether such training may improve patients' management. Methods:1) A CPA to training in appendicitis was designed and implemented. All residents of our department were trained & 38 patients undergoing appendectomy were prospectively included before (n=21) and after (n=17) CPA. 2) A CPA to training in LCS was designed in accordance with enhanced recovery (ER) recommendations, and a curriculum in LCS was validated. All residents of our department were trained & 20 patients were prospectively included before (n = 10) and after (n = 10) CPA. Results: 1) All residents were trained. Pre/intraoperative data were comparable between groups of patients. Times to liquid and solid diet were reduced after CPA (7 h (2-20) vs. 4 (4-6); P=0.004 & 17 h (4-48) vs. 6 (4-24); P=0.005) without changing postoperative morbidity & length of stay (LS). 2) Residents' participation in LCS improved afterCPA (0% (0-100) vs. 82.5% (10-100); P = 0.006). Pre/intraoperative data were comparable between groups of patients. Compliance for ER improved at day 2 in post-training patients (3 (30%) vs. 8 (80%); P = 0.035). Postoperative morbidity and LS were comparable. Conclusion: A CPA to training in LCS has been designed and implemented. It improved compliance for ER & residents participation without adversely altering patients' outcomes.