Patient reported outcome (PRO) measurement of disability is integral to a patient-centered approach to health care and gauging the biopsychosocial impact of health conditions from the patient's perspective. This thesis investigates disability after proximal humerus, elbow and distal radius fractures; conditions that constitute a major burden in musculoskeletal health care and a substantial impact on health-related quality of life (HrQoL). Disability is defined by the World Health Organisation (WHO) International Classification of Disability, Functioning and Health (ICF) as ‘a multi-dimensional construct involving a dynamic interaction between impairment, activity limitations and participation restrictions, that are influenced by contextual factors'. This international, consensus-based framework acts as a guide for the application of outcome measures in performing scientific research. The WHO ICF also considers other patient perspectives on health and health care systems, including patient experience and patient activation within the contextual factors component. Patient experience encompasses aspects such as satisfaction, expectation management and confidence with care, and is measured using a variety of scales and questionnaires. Patient activation relates to 'the knowledge, skills and confidence a person has in managing their own health and health care'. This concept is quantified using patient activation measures (PAMs). The overarching goal of this thesis is to identify the most influential factors predicting disability after proximal humerus, elbow and distal radius fractures. This work also aimed to define the relationship between disability, experience and activation to inform the development of a patient-centred approach to managing these challenging injuries. The first systematic review highlights the dominance of psychosocial factors in influencing disability associated with a range of upper extremity conditions. Few studies have assessed this relationship in specific trauma populations. The second review underlines the paucity of upper extremity PRO measures incorporating fracture populations in their original development. It also reports the highly variable quality of initial studies introducing these measures. The final review demonstrates the superior measurement properties of computer adaptive tests (CATs), a contemporary form of PRO measurement, over fixed-scale instruments. Few studies apply CATs in trauma and few have been performed outside the U.S. These reviews collectively informed the selection of PRO measures for the experimental studies in this thesis. Firstly, a pilot study establishes a methodology for addressing the key objectives and the feasibility of using a web-based platform for measuring patient outcomes. Strong correlation between PROMIS Physical function CAT, a computer adaptive measure of physical function, and the Quick Disabilities of the Arm, Shoulder and Hand (QuickDASH), a region-specific, fixed scale is observed. The core experiment (n=734) expands upon this work and demonstrates correlations between a range of generic and region-specific measures in an upper extremity trauma population. Disability is shown to correlate with satisfaction, and the strength of this correlation increases over time. Applying PRO measures of disability in populations with shoulder, elbow and wrist fractures show that self-efficacy (i.e. coping ability) within 6 weeks of injury was the strongest predictor of medium-term disability at 6-9 months. In proximal humerus and elbow fractures, kinesiophobia (i.e. fear of movement) within a week of injury was also a strong predictor of disability. The final study concludes that greater patient activation is associated with greater health-related and experiential outcomes. However, psychosocial factors including self-efficacy, superseded activation in predicting disability and satisfaction. This thesis contributes evidence for musculoskeletal health care professionals (HCPs) to consider specific psychosocial factors, such as coping abilities, and patient activation early in the recovery process to improve disability following these injuries.

The Patient Reported Outcomes Measurement Information System (PROMIS) initiative aims to provide reliable and precise item banks measuring patient-reported outcomes in different health domains.The aimof the present work was to provide a German translation of the PROMIS itembanks for satisfaction with participation and to psychometrically test these German versions. Cognitive interviews followed a forward–backward translation. Distribution characteristics, unidimensionality, Rasch model fit, reliability, construct validity, and internal responsiveness were tested in 262 patients with chronic low back pain undergoing rehabilitation. Results for the final 13- and 10-item

Objective: The primary aim of the study was to examine the automated linguistic analysis of the open-ended problem (PQ) and life-effects (LEQ) questionnaires to understand the psychological effects of tinnitus. Design: The study used a cross-sectional design. Participants completed online questionnaires which included demographic questions, several standardised patient-reported outcome measures (PROMs), and two open-ended questions focussing on PQ and LEQ related to tinnitus. The response to open-ended questions was analysed using the Linguistic Inquiry Word Count (LIWC) software to identify the frequency of text on various linguistic dimensions relevant to tinnitus. Study sample: 336 individuals with tinnitus. Results: The study results point to two broad findings. First, although PQ and LEQ have some similarities with PROMs (e.g. the linguistic dimension negative emotions having a weak positive correlation with anxiety and depression), no correlation with the number of dimensions suggests that the open-ended questions identify additional elements that are not captured in PROMs. Second, more linguistic dimensions from the PQ correlate with PROMs compared to LEQ suggesting that the current PROMs are problem-oriented. Conclusions: The study results support the idea that the use of open-ended questions in addition to PROMs may help optimise the efforts in examining the effects of chronic conditions such as tinnitus.

Context: Medical management for head and neck cancer (HNC) often includes neck dissection surgery, a side effect of which is shoulder dysfunction. There is no consensus for which patient-reported outcome measure (PRO) is most appropriate to quantify shoulder dysfunction in this population. Objective: The aims of this research study were to: (1) use Rasch methodologies to assess construct validity and overall appropriateness of test score interpretation of Disability of the Arm, Shoulder and Hand (DASH), QuickDASH, Shoulder Pain and Disability Index (SPADI) and Neck Dissection Impairment Index (NDII) in the HNC population; (2) determine appropriateness of use of University of Washington Quality of Life (UW-QoL) shoulder subscale as a screening tool for shoulder impairment; (3) recommend a new PRO, or combination of PROs, that more accurately portrays the construct of shoulder dysfunction in the HNC population. Design: One hundred and eight-two individuals who had received a neck dissection procedure within the past 2 weeks to 18 months completed the PROs. Rasch methodologies were utilized to address the primary aim of the study through consideration of scale dimensionality [principal components analysis, item and person fit, differential item functioning (DIF)], scale hierarchy (gaps/redundancies, floor/ceiling effects, coverage of ability levels), response scale structure, and reliability (person and item reliability and separation statistics). The secondary aim was addressed through correlational analysis of the UW-QoL (shoulder subscale), DASH, QuickDASH, SPADI and NDII. Results: The DASH did not meet criteria for unidimensionality, and was deemed inappropriate for utilization in this sample. The QuickDASH, SPADI and NDII were all determined to be unidimensional. All scales had varying issues with person and item misfit, DIF, coverage of ability levels, gaps/redundancies, and optimal rating scale requirements. The NDII meets most requirements. All measures were found to meet thresholds for person and item separation and reliability statistics. The third aim of this study was not addressed because the NDII was determined to be appropriate for this population. Conclusions: Rasch analysis indicates the NDII is the most appropriate measure studied for this population. The QuickDASH and SPADI are recommended with reservation. The DASH and the UW-QoL (shoulder subscale) are not recommended.

Miljöbegreppet har i modern omvårdnadsforskning fått en allt bredare och djupare dimensiondär människan i sin miljö betraktas ur ett holistiskt perspektiv. Personcentrerad vård är ettarbetssätt där man utgår från patienten som person som inte kan reduceras till enbart sinsjukdom. Att som vårdgivare vara medveten om den fysiska miljön, personers handlingar ochhur den organisatoriska filosofin är uppbyggd skapar en större möjlighet att kunna arbetapersoncentrerat. Personcentrering är det som patienten upplever, medan personcentrerad vårdär arbetssättet som genererar patientens upplevelse av personcentrering. Personcentreratklimat är den miljö där personcentrerad vård sker. De förhållanden som formas mellanpatienten, vårdpersonal, närstående och teknik liksom miljöns atmosfär, omgivning ochomvärld, är avgörande för om patienten kommer att uppleva miljön som vårdande eller ickevårdande. Syftet med studien var att undersöka och beskriva förekomst av personcentrerad vård blandpersoner som vårdats i en högteknologisk vårdmiljö i samband med hjärtkirurgi ochhjärtsvikt. Metoden var en icke-experimentell tvärsnittsstudie som genomfördes inom högteknologiskahjärtsjukvård. Datainsamlingen utfördes med hjälp av två patientrapporterade mått: BeingTaken Seriously Questionnaire - Patient version (BTSQ-P) och Person-Centered ClimateQuestionnaire - Patient version (PCQ-P). Resultatet visade att patienterna upplevde att vården var personcentrerad utifrån att bli tagenpå allvar och att den innefattade ett personcentrerat klimat. Regressionsanalysen visade att ettsäkert klimat är den viktigaste komponenten för känslan av att bli tagen på allvar. Slutsatsen var att högteknologisk hjärtsjukvård inte enbart genererar goda medicinska resultatutan också kan bidra till personcentrerad vård. Vidare drar vi lärdom av studiens resultat medkunskapen om att ett säkert klimat är den viktigaste faktorn inom det personcentreradeklimatet, för patientens upplevelse av personcentrering. / In modern nursing research, the concept of the environment has acquired an ever broader anddeeper dimension where people in their environment are viewed from a holistic perspective.Person-centered care is a way of working that is based on the patient as a person who cannotbe reduced to his or her illness alone. As a caregiver, being aware of the physicalenvironment, people's actions and how the organizational philosophy is structured creates agreater opportunity to be able to work person-centered. Person-centeredness is what thepatient experiences, while person-centered care is the way of working that generates thepatient's experience of person-centeredness. Person-centered climate is the environment inwhich person-centered care takes place. The relationships that are formed between the patient,care staff, relatives and technology, as well as the environment's atmosphere, surroundingsand settings, are decisive for whether the patient will experience the environment as caring oruncaring. The aim of the study was to investigate the prevalence of person-centered care amongstpeople who have been cared for in a high-tech care environment in connection with heartsurgery and heart failure. The method was a non-experimental cross-sectional study conducted in high-tech cardiaccare. Data collection was performed using two patient-reported measures: Being TakenSeriously Questionnaire - Patient version (BTSQ-P) and Person-Centered ClimateQuestionnaire - Patient version (PCQ-P). The results showed that the patients felt that the care was person-centered based on beingtaken seriously and that it included a person-centered climate. The regression analysis showedthat a safe climate is the most important component for the feeling of being taken seriously. The conclusion was that high-tech cardiac care not only generates good medical results butcan also contribute to person-centered care. Furthermore, we learn from the study results withthe knowledge that a safe climate is the most important factor in the person-centered climate,for the patient's experience of person-centering.

This thesis explored symptom clusters in patients with lung cancer before, during and after oncological treatment. A literature review and an interview study was used to explore the symptom cluster experience from the patients’ perspective. A large diversity of symptom cluster constellations were identified, in which fatigue was the most commonly occurring symptom, followed by dyspnea, pain, depression, cough and nutritional impact symptoms. Many symptom assessment instruments were identified, measuring mostly the intensity-dimension alone or in combination with timing. The results also stress that living with symptom clusters during treatment is more about survival than actually living. Patients’ symptom management strategies were shaped by impacting conditions such as knowledge and earlier experience of symptoms. Symptoms were often regarded as unavoidable by the patients and something to accept. How symptoms were recognized by health care professionals further added to the normalization of symptom clusters. Subsequently, patients would not always ask for support, and their quality of life was negatively affected. Holistic person-centered care including multi-dimensional symptom assessment is considered essential to ensure adequate symptom cluster management for patients with lung cancer.

The rate of Emergency Department (ED) visits due to mental health and drug abuse among children and youth has been increasing for more than a decade and is projected to become the leading cause of ED visits. Identifying high-risk patients well before an ED visit will enable mental health care providers to better predict ED resource utilization, improve their service, and ultimately reduce the risk of a future ED visit. Many studies in the literature utilized medical history to predict future hospitalization. However, in mental health care, the medical history of new patients is not always available from the first visit and it is crucial to identify high risk patients from the beginning as the rate of drop-out is very high in mental health treatment. In this study, a new approach of creating a text representation of questionnaire data for deep learning analysis is proposed. Employing this new text representation has enabled us to use transfer learning and develop a deep Natural Language Processing (NLP) model that estimates the possibility of 6-month ED visit among children and youth using mental health patient reported outcome measures (PROM). The proposed method achieved an Area Under Receiver Operating Characteristic Curve of 0.75 for classification of 6-month ED visit. In addition, a novel method was proposed to identify the words that carry the highest amount of information related to the outcome of the deep NLP models. This measurement of word information using Entropy Gain increases the explainability of the model by providing insight to the model attention. Finally, the results of this method were analyzed to explain how the deep NLP model achieved a high classification performance. / Dissertation / Master of Applied Science (MASc) / In this document, an Artificial Intelligence (AI) approach for predicting 6-month Emergency Department (ED) visits is proposed. In this approach, the questionnaires gathered from children and youth admitted to an outpatient or inpatient clinic are converted to a text representation called Textionnaire. Next, AI is utilized to analyze the Textionnaire and predict the possibility of a future ED visit. This method was successful in about 75% of the time. In addition to the AI solution, an explainability component is introduced to explain how the natural language processing algorithm identifies the high risk patients.

No description available.

Background Monteggia fractures and Monteggia-like lesions result after severe trauma and have high complication rates. Preliminary biomechanical studies suggested a correlation between ulnar fracture localization and clinical result. Objectives Key objective was to evaluate whether the site of the ulnar fracture can be correlated to clinical outcome after open reduction and internal stabilization. Methods In a retrospective, monocentric study 35 patients who underwent surgical treatment after suffering a Monteggia injury or Monteggia-like lesion were included. Fractures were classified according to Bado and Jupiter, the site of the fracture location at the proximal ulna and regarding the potential accompanying ligamentary injury. In a follow-up examination validated patient-reported outcome measures and functional parameters were evaluated. Furthermore, treatment strategy and complications were analysed. Results Mean patient age was 51.9 years (± 18.0). 69% were females (n = 24). Follow-up took place after 50.5 months (± 22.1). Fractures were classified according to Bado (I:2, II:27, III:4, IV:2). Bado II-fractures were further classified according to Jupiter (A:7, B:16, C:3, D:1). Cases were divided into subgroups depending upon the distance of the ulnar fracture site in respect to its distal endpoint (A: < 7 cm and B: > 7 cm). Average overall MEPS was 84.1 (± 19.0). Oxford elbow score and DASH were 37.2 (± 10.5) and 20.4 (± 20.5). Average extension capability reached − 7° (± 7.5). Mean flexion was 134.8° (± 19.7). Average pain according to visual analogue scale was 1.6 (± 1.9). We found no differences between the subgroups regarding the PROMs. Subgroup A displayed a worse extension capability (p = 0.027) and patients were significantly older (p < 0.01). Comparing patients with and without fracture of the radial head, we observed no differences. Patients with an accompanying injury of the coronoid process displayed higher pain levels (p = 0.011), a worse functionality (p = 0.027) and overall lower scoring in PROM. Conclusion The presented results suggest that in Monteggia fractures and Monteggia-like lesions, the localization of the ulna fracture can give a hint for its postoperative outcome. However, we could not confirm the hypothesis of an increasing instability in ulnar fractures located further distally (high severity of the potential ligamentous injury). Intraarticular fractures or injuries with a close relation to the joint have a worse prognosis, especially if the coronoid process is injured. Trial registration Registration was done with ClinicalTrials.gov under NCT05325268.

I performed two randomised controlled trials (RCTs) to determine the best treatments for enteric fever in Kathmandu, Nepal, an area with a high proportion of nalidixic acid resistant S. Typhi and S. Paratyphi A isolates. I recruited 844 patients with suspected enteric fever to compare chloramphenicol versus gatifloxacin. 352 patients were culture confirmed. 14/175 patients treated with chloramphenicol and 12/177 patients treated with gatifloxacin experienced treatment failure (HR=0.86 (95% CI 0.40 to 1.86), p=0.70). The median times to fever clearance were 3.95 and 3.90 days, respectively (HR=1.06 [CI 0.86 to 1.32], p=0.59). The second RCT compared ofloxacin versus gatifloxacin and recruited 627 patients. Of the 170 patients infected with nalidixic acid resistant strains, the number of patients with treatment failure was 6/83 in the ofloxacin group and 5/87 in the gatifloxacin group (Hazard Ratio, HR=0.81, 95% CI 0.25 to 2.65; p=0.73); the median times to fever clearance were 4.7 and 3.3 days respectively (HR=1.59 [CI 1.16 to 2.18], p=0.004). I compared conventional blood culture against an electricity free culture approach. 66 of 304 patients with suspected enteric fever were positive for S. Typhi or S. Paratyphi A, 55 (85%) isolates were identified by the conventional blood culture and 60 (92%) isolates were identified by the experimental method. The percentages of positive and negative agreement for diagnosis of enteric fever were 90.9% and 96.0%, respectively. This electricity free blood culture system may have utility in resource-limited settings or potentially in disaster relief and refugee camps. I performed a literature review of RCTs of enteric fever which showed that trial design varied greatly. I was interested in the perspective of patients and what they regarded as cure. 1,481 patients were interviewed at the start of treatment, 860 (58%) reported that the resolution of fever would mean cure to them. At the completion of treatment, 877/1,448 (60.6%) reported that they felt cured when fever was completely gone. We suggest that fever clearance time is the best surrogate for clinical cure in patients with enteric fever and should be used as the primary outcome in future RCTs for the treatment of enteric fever.