Background Stroke is a major cause of disability worldwide. After treatment in a specialized stroke unit, early supported discharge (ESD) followed by home rehabilitation has shown to be an effective way to improve patient outcome and quality of care for persons with mild to moderate stroke. ESD service is recommended in the national and international guidelines for stroke care, but has only partially been implemented in Sweden. Following stroke, fatigue is a common consequence that often becomes more evident when the patient comes home. Currently, there is insufficient evidence about how to measure, treat and handle post-stroke fatigue. The overall aim of this thesis was to evaluate and implement early supported discharge (ESD) based on stroke patients experience after discharge from the stroke unit and local conditions. The aim was also to evaluate post-stroke fatigue with a potentially valid and reliable scale and finally to prepare for a study to evaluate cardiorespiratory training as a part of ESD service for patients with post-stroke fatigue. Methods In paper I, nine strategically chosen patients were interviewed of their experience of falling ill, the hospital stay, discharge, contact with health care after discharge and their request of support. Papers II-III describe and evaluate the development, content, implementation and effects of a locally adopted method for early supported discharge (Umeå Stroke Center ESD) in modern stroke care. Paper II included 153 consecutive patients and paper III, 30 232 patients with first-ever stroke registered in the Riksstroke registry in Sweden. Paper II evaluated number of patients/year, clinical and functional health status, satisfaction in relation to needs, accidental falls/other injuries and resources with the result summarized in a value compass. The implementation process was evaluated retrospectively by means of Consolidated Framework for Implementation (CFIR). Paper III evaluated patient reported outcome measurements (PROMs) at 3 months. The primary outcome in paper III was satisfaction with the rehabilitation after discharge. Secondary outcomes were information about stroke provided, tiredness/fatigue, pain, dysthymia/depression, general health status and dependence in activities of daily living (mobility, toilet hygiene and dressing). Multivariable logistic regression models for each PROM was used to analyze associations between PROMs and ESD/no ESD. In Paper IV, the Fatigue Assessment scale (FAS) was translated into Swedish and evaluated regarding psychometric properties when self-administered by persons with mild to moderate stroke. 72 consecutively patients selected from the stroke unit admission register received a letter including three questionnaires: the FAS, the Short Form Health Survey (SF-36) subscale for vitality and the Geriatric Depression Scale GDS-15. A second letter with FAS was sent within 2 weeks, for re-test evaluation. Paper V is a study protocol for a planned randomized controlled trial (RCT) of 50 consecutive stroke patients will who receive stroke unit care followed by ESD-service at Umeå Stroke Center, University Hospital, Umeå, Sweden. Paper V will investigate if a structured cardiorespiratory interval training program (CITP) added to the ESD-service may result in relieved post-stroke fatigue and increased oxygen uptake. Results The interviews in Paper I revealed three main categories with subcategories: “Responsible and implicated”, “Depersonalized object for caring measures” and “The striving for repersonalization and autonomy”. The findings indicate that coming home gave the informants’ important insights and understanding of the stroke, its consequences and was also an important factor for the recovery. Paper II-III showed that it is possible to develop and implement an adapted ESD service for stroke patients based on the patients’ experiences and requests, evidence-based recommendations and local conditions. The ESD service reduced dependence of activity, increased mobility with seemingly no increased risk of accidental falls or other injuries. The patient satisfaction in relation to needs regarding the ESD was high. Paper III showed that patients that received ESD were more satisfied with rehabilitation after discharge, had less need for assistance with ADL and less dysthymia/depression compared to patients that did not receive ESD. Study IV showed that the Swedish FAS used at home as a selfadministered questionnaire is a reliable and valid questionnaire for measuring fatigue in persons with mild to moderate stroke. The internal consistency was good, the agreement between the test and retest reliability for individual items (weighted kappa) was for the majority of items good or moderate. The relative reliability for total scores was good and the absolute reliability was 9 points. The Swedish FAS had no floor nor ceiling effects and correlated both with the SF-36, subscale for vitality and the GDS-15 indicating convergent construct validity, but not divergent construct validity. Conclusion It is possible to develop and implement ESD care for stroke patients based on patients’ experience and needs, evidence-based principles and local conditions. Early supported discharge (ESD) in the setting of modern stroke unit care appears to have positive effects on rehabilitation in the subacute phase. The Swedish FAS used at home as a self-administered questionnaire is reliable and valid for measuring fatigue in persons with mild to moderate stroke.

Psoriatic arthritis is an inflammatory arthritis affecting a fifth of patients with skin psoriasis. Inflammation of the joints and tendons causes pain, stiffness, reduced function and disability. Work disability is increasingly recognised as an important, patient centred, functional measure of disease yet little is known about work disability in psoriatic arthritis. The overall aim of my thesis is to examine patient reported work disability in psoriatic arthritis by undertaking the following; • A systematic review of the relevant literature • Classification of a cohort of patients to study • Validation of a commonly used work outcome measure used in other rheumatic diseases • Selection of a suitable measure of structural damage to inflamed joints for investigating the associations of work disability in longitudinal observational studies. The results of the systematic review identified limited data reporting high levels of work disability associated with a wide variety of disease and non-disease related factors. The review also identified the lack of a validated outcome measure for use in psoriatic arthritis. I report the classification of a large single centre longitudinal cohort of patients with psoriatic arthritis and evidence supporting the retrospective application of a psoriatic arthritis classification criterion. Subsequently I report a preliminary validation study of the work productivity and activity impairment questionnaire to measure work disability in psoriatic arthritis and a further study comparing the existing measures of structural damage in psoriatic arthritis. Finally I developed and supervised a multicentre observational study to examine the associations of work disability in psoriatic arthritis. The study identified reduced work effectiveness to be associated with measures of disease activity, whereas unemployment was associated with recent disease onset, greater age and worse physical function. The study will provide a valuable cohort for prospective study of work disability and the effect of medical treatment and will form part of my planned post-doctoral studies.

Unexpected dramatic changes in psychotherapy have been observed historically and tied to high recovery rates. Many different methodologies that identify these changes are assumed to be capturing similar or identical phenomena. This study compared three methods – Sudden Gains (SG), Percentage Increase – 50% (PI-50%), and Rapid Response (RR) - in a large database looking for similarities and differences. Results suggest that there are significant differences between SG, RR, and PI-50 as methods for operationally defining unexpected dramatic treatment response, and caution should be used when referring to SG, PI-50, and RR as the same phenomenon or interchangeable terms for unexpected dramatic treatment response. In particular, overlap in clients who experienced both a SG and RR was low. Experiencing any of the three phenomenon was associated with higher recovery rates, while differences abound in both which clients experience each of the phenomena and demographic characteristics of those clients. PI-50 identified inconsequential amounts of clients suggesting under its current methodological construction it would have limited useability. These results tying SG, RR, and PI-50 to significant rates of recovery and positive treatment change suggest possible future use as a predictive feedback tool for clients and clinicians alike to be better able to examine the effectiveness of treatment components during treatment.

No description available.

<p>Appendices include current drafts of the Hamilton Inventory for Complex Regional Pain Syndrome and the associated user manual for the assessment tool.</p> / <p>Complex regional pain syndrome is a neurological condition characterized by a constellation of variable and seemingly disparate signs and symptoms for which there is presently no definitive diagnostic test. The opportunity exists for development of a condition-specific outcome measure for complex regional pain syndrome affecting any limb(s) that could be used by therapists, physicians and researchers to evaluate their patients, make treatment decisions, and monitor the changes in both impairments and quality of life experienced by those affected individuals. This thesis addresses outcome assessment in complex regional pain syndrome, incorporating 2 papers. The first is a systematic review of the current scope and psychometric rigor of outcome assessments available to health professionals to guide their management of this condition. The second paper describes the preliminary development steps of a new measurement tool for complex regional pain syndrome, with a focus on a cognitive debriefing study of current assessment practices and preferences of a cross-section of health professionals used to inform the definitions and user manual for a multi-disciplinary assessment. Finally, the thesis addresses areas for future refinement and testing of the proposed outcome measure.</p> / Master of Science (MSc)

<p>This thesis focuses on routine outcome measurement in occupational therapy; specifically the use of the Canadian Occupational Performance Measure (COPM) in inpatient geriatric rehabilitation.</p> <p>The purpose of the first study (Chapters two and three) was to: 1) determine if routine COPM use was associated with improved functional outcome; 2) gather therapist perceptions on routine COPM use; and, 3) propose a template for summarizing COPM data. A cohort study with a therapist participant survey measured the difference in Functional Independence Measure (FIM^™) change scores between an experimental group (n = 45) that implemented the routine use of the COPM for evaluation/planning and a historical “usual care” comparison group (n = 58). Using generalized linear modeling, it was found that both groups had significant changes in FIM^™scores over time (p <. 05). Differences between groups were not significant. Therapists perceived that the COPM facilitated treatment but experienced challenges in routine use. Therapists placed more importance on individual than group data.</p> <p>The second study (Chapter four) determined if routine use of the COPM was associated with changes in five domains of practice: focus of care on occupation, knowledge of client perspective, clinical decision-making, clinician ability to articulate outcomes, and documentation. Twenty-four occupational therapists on eight geriatric rehabilitation units completed a before-and-after study with a repeated baseline. Domains of practice during three months of standard care (no COPM) were compared using Chart Stimulated Recall and chart audit as outcome measures to three months of intervention (COPM). Mean practice scores indicated a significant effect for time (p < .0001) but no effect based on the frequency of COPM use. Chart audit indicated that COPM use resulted in more occupation-focused issue identification.</p> <p>This thesis challenges assumptions regarding the value of measurement and contains the first study to demonstrate that routine outcome measure use affects occupational therapy practice.</p> / Doctor of Philosophy (PhD)

Background: Outcomes are integral to psychiatry research for evaluating intervention effectiveness in randomized controlled trials (RCTs) and understanding disease progression in observational research. Carefully defined, measured, and consistently used outcomes guide clinical decision-making and enhance research applicability. Bridging methodological gaps through rigorous assessment is essential for minimizing variability and mitigating research waste. Objectives: This dissertation aims to assess: (i) outcome selection in geriatric depression RCTs, (ii) primary outcome reporting in these trials, and (iii) measurement of multimorbidity patterns in observational research on people with opioid use disorder (OUD). Methods: Three studies were conducted: (i) a systematic survey examining outcome selection heterogeneity in geriatric depression RCTs (2011-2021), (ii) an assessment of primary outcome reporting comprehensiveness in these trials, and (iii) an observational study using hierarchical cluster analysis (HCA) and K-means clustering to compare statistical techniques for measuring multimorbidity patterns among people with OUD. Results: Findings suggest variability in outcome selection, reporting, and measurement in psychiatry research. (i) The systematic survey revealed significant heterogeneity in outcomes and outcome measurement instruments (OMIs) in geriatric depression RCTs, impeding cross-study comparisons. (ii) The assessment of primary outcome reporting highlighted variability and insufficiency in reporting the rationale for outcome selection, measurement properties of OMIs, and criteria for clinically meaningful change, limiting the interpretability of trial findings. (iii) The observational study on multimorbidity patterns among people with OUD identified significant variations in chronic condition clusters using HCA and K-means clustering, indicating the need for careful consideration of statistical techniques in outcome measurement to inform clinical care accurately. Conclusion: These findings highlight the need for standardized practices in outcome selection, reporting, and measurement in psychiatry research. Addressing these issues through developing core outcome sets, improving adherence to reporting guidelines, and refining measurement methodologies will enhance research reliability and applicability, ultimately improving clinical decision-making and patient care in psychiatry. / Dissertation / Doctor of Philosophy (PhD) / When studying mental health, researchers examine outcomes to determine whether treatments are effective and how to measure co-occurring chronic conditions. These outcomes must be defined clearly, measured accurately, and used in the same way across research to help clinicians make treatment decisions and be able to use research in clinical practice. This project focussed on three main issues related to outcomes: how researchers select outcomes for studies on depression among older adults, how well they report these outcomes, and how they measure the outcome of multiple chronic diseases in people with opioid use disorder. The findings revealed significant differences in how outcomes are selected, reported, and measured, making it challenging for researchers to compare studies and for clinicians to use research results. By implementing standardized practices in outcomes and improving their selection, reporting, and measurement, research can become more useful, leading to better care for people with mental illness.

If knowledge has been gathered by the practitioners’ community in the area of health data warehousing evaluation, it is mostly relying on anecdotal evidence instead of academic research. Isolated dimensions have received more attention and benefit from definitions and performance measures. However, very few cases can be found in the literature which describe how the assessment of the technology can be made, and these cases do not provide insight on how to systematize such assessment. The research in this dissertation is aimed at bridging this knowledge gap by developing an evaluation framework, and conducting an empirical study to further investigate the state of health data warehousing evaluation and the use of the technology to improve healthcare efficiency, as well as to compare these findings with the proposed framework. The empirical study involved an exploratory approach and used a qualitative method, i.e. audio-taped semi-structured interviews. The interviews were conducted in collaboration with the Healthcare Data Warehousing Association and involved 21 participants who were members of the Association working in a mid- to upper-level management capacity on the development and implementation of health data warehousing. All audio-taped interviews were transcribed and transcripts were coded using a qualitative analysis software package (NVivo, QSR International). Results were obtained in three areas. First, the study established that current health data warehousing systems are typically not formally evaluated. Systematic assessments relying on predetermined indicators and commonly accepted evaluation methods are very seldom performed and Critical Success Factors are not used as a reference to guide the system’s evaluation. This finding appears to explain why a literature review on the topic returns so few publications. Second, from patient throughput to productivity tracking and cost optimization, the study provided evidence of the contribution of data warehousing to the improvement of healthcare systems’ efficiency. Multiple examples were given by participants to illustrate the ways in which the technology contributed to streamlining the care process and increase healthcare efficiency in their respective organizations. Third, the study compared the proposed framework with current practices. Because formal evaluations were seldom performed, the empirical study offered limited feedback on the framework’s structure and rather informed its content and the assessment factors initially defined. / Graduate

Assessment in patients with NMD consists principally of measures of motor impairment since they are well known by clinicians and their measures do not require much equipment. The conventional treatments in patients with NMD are above-all focused on the diminution of motor impairments by maintaining or improving joint mobility, muscle strength and endurance. Nevertheless, a reduction of motor impairments does not directly lead to a higher ability in performing daily activities. Therefore, activity limitations should be measured specifically. A new scale of activity limitations was first developed in children and adults with NMD. The use of the Rasch model provided a scale to assess the fundamental psychometric qualities. Secondly, relationships between motor impairments and activity limitations were investigated to verify the assumption that reduced motor impairments do not necessarily lead to higher activity levels. Finally, to complete the investigation of psychometric qualities, a longitudinal study of the developed questionnaire was carried out to evaluate its sensitivity to change. Chapter 1 presents the development of ACTIVLIM, a Rasch-built measure of activity limitations and its validation in children and adults with NMD. ACTIVLIM is a self-reported questionnaire that assesses the difficulties adult patients and parents of affected children perceive when they or their children perform daily activities. This questionnaire originally included 126 daily activities and was submitted to 369 patients. The Rasch model selected 22 daily activities to define a linear and unidimensional measure of activity limitations in patients with NMD. The validity and the reproducibility of the results were also studied. A second section of Chapter 1 demonstrates why the measure of activity limitations in children with NMD as assessed using the ACTIVLIM questionnaire is based upon the perception of their parents. A third section of Chapter 1 compares the difficulties self-perceived by the patients with the difficulties observed by external examiners. The agreement between both measures is very good, indicating that the use of ACTIVLIM as a self-reporting questionnaire is a valid method to assess activity limitations in patients with NMD. Chapter 2 investigates the relationships between motor impairments and activity limitations as measured with the ACTIVLIM questionnaire. As the anatomical basis and pathophysiology are different from one NMD to another, the relationships between impairments and activity limitations were investigated in six main diagnostic groups and in the whole sample without diagnostic distinction. Gait speed and muscle weakness in proximal and flexor muscle groups were significantly but moderately correlated to the activity limitations, indicating that the latter cannot simply be inferred from motor impairments but should be independently measured and treated. Chapter 3 investigates the sensitivity to change of the ACTIVLIM questionnaire. As NMD are progressive disorders, it is important that the ACTIVLIM questionnaire be able to assess the change over time in the activity level of patients with NMD in order to characterize the disease course and to quantify the effects of new treatments on activity limitations in these patients. Finally, the last section discusses the results of the different chapters and presents perspectives for future research.

It is the responsibility of professions to provide evidence of the demonstrable value and quality of service delivery. Occupational therapists in mental health care settings find it difficult to produce convincing evidence of the demonstrable value and their contribution to health care. Currently no effective outcome measure for occupational therapists in mental health practices exists for the South African context . The development of an outcomes measuring system is much needed in these crucial times of cost-cutting, rendering quality of care with the minimum resources and the quest for evidence of the effect of intervention. The purpose of this study was to fill the outcome measurement gap by developing a system that is clinically tested and user-friendly for occupational therapists in mental health care settings. Such a system had to represent the outcomes in the occupational therapy programmes, meet the needs of the therapist in terms of purpose of the tool, be easily administered and be standardised. It was also important that the outcome measure was grounded in the theoretical framework that guides intervention programmes, namely Vona du Toit’s Model of Creative Ability. This theoretical framework is widely used in South African mental health care settings and was found suitable to be transformed into a rating scale for the outcome measure. A participatory approach combined with a mixed method exploratory design, specifically the instrument development model, was selected to guide the study. The development of the outcome measure happened in three phases. Domains for the outcome measure emerged after participation from occupational therapy clinicians and mental health care users in Phase 1. The operationalisation of the domains and the development of the rating scale happened during Phase 2. The third phase was the piloting of the outcome measure to identify issues to be optimised for the final implementation of the outcome measure. Eight domains with 52 representative items emerged from Phase 1. The domains were Process skills, Communication and Interaction skills, Lifeskills, Role performance, Balanced lifestyle, Motivation, Self-esteem and Affect. Clinicians were satisfied that these domains represented the service that they deliver and compared well with the mental health care users’ need for occupational therapy. The involvement of mental health care users in confirming relevant domains for the outcome measure ensured a client-centred approach in the research process. The outcome measure, named as the Activity Participation Outcome Measure (APOM), has a unique feature of generating reports and spider graphs for every mental health care user. The APOM was piloted in three mental health care settings. In spite of good intentions from clinicians to apply the measure, it was clear that measuring outcomes is neither a priority, nor a routine task in clinical settings. The preliminary investigation into the psychometric properties yielded positive results. However, the sample sizes for the validity and reliability samples were not optimal and further data collection needs to continue for confirmation. It is recommended that investigations into the psychometric properties of the instrument continue to eventually market it as a valid and reliable outcome measure for occupational therapists in mental health care settings. / Thesis (PhD)--University of Pretoria, 2010. / Occupational Therapy / unrestricted