Recent interest in identifying and measuring health outcomes represents an advance in our understanding of how health care for individuals should be evaluated. However, the concept of health outcomes has mainly focussed on improvements in health status. Non-health outcomes of health care may also be important to patients. In this thesis, four tasks were undertaken with the aim of identifying non-health outcomes and establishing the extent of their relevance and importance to patients. First, the illness experience literature was reviewed to identify potential non-health outcomes. Seven categories of non-health outcomes were identified: information, being treated with dignity, being able to trust the health care provider, having distress recognised and supported, participating in decision making, legitimation and reassurance. Second, to gain an in-depth understanding of these concepts, topic-specific literature was reviewed and synthesised. Third, in order to confirm how relevant and important the concepts were to patients, a qualitative study was conducted with each of two different groups of health service users. Broadly, patients considered that all the non-health concepts were relevant, although the extent to which they were important varied. Fourth, to test the relative importance of the seven concepts, a Stated Preference Discrete Choice experiment in the context of general practice was conducted. This study showed that most people thought their GP demonstrated behaviour likely to result in the production of non-health outcomes. The results showed that although all the non-health outcomes were, to some extent, preferred by respondents, trust was most important, followed by legitimation and recognition of and support for emotional distress. Once again, these results point to the importance of context in the evaluation of health care from the patient's perspective. While still being perceived as positive aspects of health care, the provision of information and acting autonomously or participating in decisions about their health care were the non-health outcomes considered least important by patients

Recent interest in identifying and measuring health outcomes represents an advance in our understanding of how health care for individuals should be evaluated. However, the concept of health outcomes has mainly focussed on improvements in health status. Non-health outcomes of health care may also be important to patients. In this thesis, four tasks were undertaken with the aim of identifying non-health outcomes and establishing the extent of their relevance and importance to patients. First, the illness experience literature was reviewed to identify potential non-health outcomes. Seven categories of non-health outcomes were identified: information, being treated with dignity, being able to trust the health care provider, having distress recognised and supported, participating in decision making, legitimation and reassurance. Second, to gain an in-depth understanding of these concepts, topic-specific literature was reviewed and synthesised. Third, in order to confirm how relevant and important the concepts were to patients, a qualitative study was conducted with each of two different groups of health service users. Broadly, patients considered that all the non-health concepts were relevant, although the extent to which they were important varied. Fourth, to test the relative importance of the seven concepts, a Stated Preference Discrete Choice experiment in the context of general practice was conducted. This study showed that most people thought their GP demonstrated behaviour likely to result in the production of non-health outcomes. The results showed that although all the non-health outcomes were, to some extent, preferred by respondents, trust was most important, followed by legitimation and recognition of and support for emotional distress. Once again, these results point to the importance of context in the evaluation of health care from the patient's perspective. While still being perceived as positive aspects of health care, the provision of information and acting autonomously or participating in decisions about their health care were the non-health outcomes considered least important by patients

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

Made available in DSpace on 2011-05-04T12:36:15Z (GMT). No. of bitstreams: 0 Previous issue date: 2009 / O tratamento do câncer através de novas tecnologias tem permitido a cura ou o controle da doença, por tempo progressivamente maior, requerendo o acompanhamento do paciente durante vários anos de maneira no sentido de avaliar resultados do tratamento ou intervir rapidamente nos casos de recidiva. O objetivo geral deste trabalho é desenhar um sistema informatizado capaz de agregar dados clínicos, procedimentos utilizados e custos associados ao tratamento de pacientes com câncer, com vistas a subsidiar a gestão da atenção oncológica. Objetivos específicos contemplados no desenho do sistema incluem: (1) projetar aagregação de dados cadastrais e dados longitudinais clínicos relativos ao uso de procedimentos e custos associados ao tratamento de pacientes com câncer; (2) complementar a informatização do cadastro de procedimentos/atividades, hoje parcialmente informatizado, e integrar os sistemas (criação do prontuário eletrônico); (3) desenvolver um subsistema de custos associados à realização de procedimentos diagnósticos, terapêuticos, de reabilitação e suporte clínico, na atenção aos pacientes com câncer, no nível ambulatorial e hospitalar, consistente com o cadastro de procedimentos/atividades; e (4) desenvolver ferramenta para extração de relatórios. Todos os dados a serem integrados deverão estar armazenados em bancos de dados eletrônicos para a disponibilização em tempo real das informações. Para a consideração dos custos de atenção será utilizado o método de análise de custo baseado em atividade, que provê um processo técnico de rastreamento de custos associados às atividades desenvolvidas. O programa de custos deverá ser construído em módulos capazes de dar conta de diferentes níveis de complexidade, vislumbrando o uso em instalações hospitalares de qualquer porte. O trabalho aqui desenvolvido tem forte potencial de aplicação no INCA, podendo viabilizar a geração de conhecimento sobre a situação do câncer, apontando caminhos de ação, identificando necessidades de investimento e contribuindo para a análise das tecnologias em uso, novas tecnologias e possíveis revisões e mudanças de protocolos. Espera-se que ele se constitua em um projeto piloto de um sistema de informação em câncer no país, capaz de fornecer dados confiáveis e atualizados acerca dos aspectos clínicos, uso de recursos, resultados e custos, relativos á atenção ao paciente com câncer. / Cancer treatment based on new technologies has allowed the cure or the disease control for progressively longer periods, requesting the follow-up of patients through many years, in the sense of outcomes evaluation as well as prompt intervention in the disease recurrence cases. This work is aimed at designing an electronic system able to aggregate clinical data, procedures employed and costs associated with cancer attention to subsidize oncologic attention management. Specific objectives contemplated in the system design include: (1) projecting aggregation of cadastral and clinical longitudinal data relative to procedures use and costs associated with cancer treatment; (2) fulfilling computerization needs regarding procedures and activities recording, and integrating electronic systems (creation of electronic patient recording system); (3) developing a cost subsystem related to diagnostic, therapeutic, rehabilitation and clinical support procedures, applied on outpatient and inpatient cancer attention, adjusted to procedures and activities recording; and (4) developing a report extraction tool. All data to be integrated must be loaded in electronic databases, able to provide real-time information. To consider attention costs, we will apply the activity-based costing method, which provides a technical process of monitoring costs associated with de activities. The cost applicative must be built as modules able to account for different complexity levels, applicable in any size hospitals. The work developed here has strong application potential in INCA, enabling it to generate knowledge about cancer status, pointing out courses of action, identifying investment needs and contributing to the analysis of the current technologies, new technologies and eventual protocol reviews and changes. It is expected to constitute the pilot project for a cancer information system in the country, able to provide reliable and updated data concerning clinical aspects, resource use, costs and outcomes relative to cancer patients’ health care.