Dissertations / Theses on the topic 'Patient-reported outcomes and experiences'
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Acum, Michelle. "End of pathway cleft surgery : exploring the patient-reported outcomes and young people's decision making experiences." Thesis, University of East Anglia, 2018. https://ueaeprints.uea.ac.uk/68908/.
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Objective: Literature exploring how young people (YP) experience cleft surgery at the end of the treatment pathway is limited, both in terms of their reported outcomes and their experience of deciding whether to undergo surgery. This thesis aimed to add to the cleft field by reviewing the patient-reported outcomes (PROs) of end of pathway cleft surgery and exploring YP’s experiences of deciding whether to undergo orthognathic surgery (OS; an end of pathway cleft surgery). Design: A systematic literature search identified studies measuring the PROs of undergoing end of pathway cleft surgery. To explore OS decision making experiences a qualitative design was employed and interviews conducted with twelve YP. Results: The 22 studies measuring PROs varied in methodological quality; most were small scale and none utilised a measure validated in the cleft population, meaning it is hard to draw conclusions about end of pathway cleft surgery from the patient perspective. Thematic Analysis of YP’s accounts resulted in the development of four themes to depict YP’s decision making experiences: 1) Awareness of difference, 2) Committing to the process, 3) Others facilitating decision making and 4) Responsibility on my shoulders. Conclusions: This thesis reveals the difficulty in determining PROs of end of pathway cleft surgery due to the methodological challenges and the heterogeneity of what, how and when outcomes are measured. It demonstrates the contextual, social and personal complexities YP experienced in the process of deciding about OS during a period of developmental transition. Theoretical, clinical and research implications are discussed.
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Jayakumar, Prakash. "Patient reported outcome (PRO) measurement of disability in orthopaedic trauma to the upper extremity." Thesis, University of Oxford, 2017. https://ora.ox.ac.uk/objects/uuid:4f39d510-c902-4112-8806-4eefb9bf25d3.
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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 âa 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.
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Crocker, Helen. "Coeliac disease : health-related quality of life and patients' experiences of health care services." Thesis, University of Oxford, 2016. http://ora.ox.ac.uk/objects/uuid:7758bef9-d019-4b9f-b992-d7bf453ad427.
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Coeliac disease (CD) is a chronic gastrointestinal condition, the only treatment for which is a gluten-free diet (GFD). Following a GFD is restrictive, burdensome, and can impact health-related quality of life (HRQOL). People with CD can experience long delays to diagnosis and evidence suggests large variations in follow-up care, but the relationship between health care experiences and HRQOL is unknown. The main aim of this research was to develop a patient-reported outcome measure and patient experience questionnaire, and use these to investigate the relationship between adults' experiences of health care services and HRQOL in CD. The questionnaires, named the Coeliac Disease Assessment Questionnaire (CDAQ) and the Coeliac Disease Patient Experience Questionnaire (CD-PEQ), were developed following qualitative interviews with adults with CD, and refined with input from experts, and cognitive interviews. The CDAQ was also subject to a translatability assessment to assess its linguistic and cultural translatability, and a cross-sectional survey to assist with item reduction and scale generation. Members of Coeliac UK (n=267) completed the CDAQ and CD-PEQ, together with the SF-36v2 and demographic questions as part of a postal survey. Psychological health, vitality, general health, and dietary burden were found to have the greatest impact on HRQOL, with physical health and social isolation the least affected. HRQOL was found to have a strong correlation with patients' experiences of health care services. Aspects most strongly related were: the provision of information; communication with HCPs; difficulty obtaining prescriptions; and GPs' knowledge. This research has identified aspects of health care services that are strongly related to HRQOL in CD. Health care providers are recommended to focus service improvement efforts on these areas. A reliable and valid disease-specific patient-reported outcome measure and patient experience questionnaire have been developed as part of this study. The CDAQ is suitable for use in research studies, including clinical trials, to assess HRQOL in CD.
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Fitzpatrick, Janet M. "Patient-based outcomes : older adults' perceptions of hospital and recovery experiences /." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1999. http://www.collectionscanada.ca/obj/s4/f2/dsk3/ftp04/nq54846.pdf.
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Larsson, Ing-Marie. "Post-Cardiac Arrest Care : Therapeutic Hypothermia, Patient Outcomes and Relatives’ Experiences." Doctoral thesis, Uppsala universitet, Institutionen för kirurgiska vetenskaper, 2014. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-229758.
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The overall aim of the thesis was to study post-resuscitation care of cardiac arrest (CA) patients with a focus on therapeutic hypothermia treatment, outcomes up to six months post-CA and relatives’ experiences during the hospital stay. In Paper I, the aim was to asses effectiveness of hypothermia treatment with cold, 4°C, intravenous crystalloid infusion combined with ice packs. In conclusion, the described cooling method was found to be useful for inducing and maintaining hypothermia, allowed good temperature control during rewarming and to be feasible in clinical practice. The aim in Paper II was to investigate biomarkers and the association of serum glial fibrillary acidic protein (GFAP) levels with outcome, and to compare GFAP with neuron-specific enolas (NSE) and S100B. The result showed increased GFAP levels in the poor outcome group, but did not show sufficient sensitivity to predict neurological outcome. Both NSE and S100B were shown to be better predictors. A combination of the investigated biomarkers did not increase the ability to predict neurological outcome. In Paper III, the aim was to investigate whether there were any changes in and correlations between anxiety, depression and health-related quality of life (HRQoL) over time, between hospital discharge and one and six months post-CA. There was improvement over time in HRQoL, but changes over time in anxiety and depression were not found. Physical problems seemed to affect HRQoL more than psychological problems. The results also indicate that the less anxiety and depression patients perceive, the better their HRQoL. In the fourth paper, the aim was to describe relatives’ experiences during the next of kin’s hospital stay after surviving a CA. The analysis resulted in three themes: The first period of chaos, Feeling secure in a difficult situation, and Living in a changed existence. In conclusion, the results of the thesis have helped to improve knowledge within the areas studied and reveal aspects that should be taken into account in the overall treatment of this group of patients. The thesis have also shown the importance of developing an overall view and establishing a chain of care from an individual’s CA until follow-up for both the patient and his/her relatives.
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Wallin, Ewa. "Post Cardiac Arrest Care : Evaluation of prognostic tools, Patient outcomes and Relatives’ experiences at 6 months after the event." Doctoral thesis, Uppsala universitet, Anestesiologi och intensivvård, 2015. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-248044.
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The overall aim of the present thesis was to study post-resuscitation care of cardiac arrest (CA) patients treated with target temperature management 33°C with a focus on evaluation of two prognostic tools: variations in cerebral venous saturation and acute magnetic resonance imaging (MRI) findings on the brain post-CA. An additional aim was to investigate patients’ neurological outcome and relatives’ experiences 6 months after the event. Paper I describes the cerebral oxygen saturation of blood obtained from a jugular bulb (SjvO2) catheter The results showed that patients with poor outcome tended to have higher SjvO2values,but this difference was only significant at 96 and108 hours post-CA. The main findings of Paper II were that patients with good outcome displayed a pathological pattern mainly in the frontal and parietal lobes on MRI of the brain. Patients with poor outcome had an extensive pathological pattern in several brain regions. Furthermore, very low apparent diffusion coefficient (ADC) values were associated with poor outcome regardless of brain region. Paper III investigated physical and cognitive function over time, between one month and 6 months post-CA, as well as d life satisfaction at 6 months. The results showed that impairment in physical and cognitive function is common in CA survivors but tends to decrease over time. Despite a severe illness, which has impaired the physical and cognitive functions, satisfaction with life as a whole was reported by 70% of CA survivors. In Paper IV, relatives described their experiences 6 months after a significant others CA. The analysis resulted in three themes reflecting relatives’ everyday life 6 months after the event: Difficulties managing a changed life situation, Feeling like I come second and Feeling new hope for the future. In conclusion, the results of the present thesis have increased our understanding of the two prognostic tools that were investigated; they have generated new and revealed aspects that should be taken into account during prognostication and assessing neurological outcome of this group of patients. The thesis has also shown that the healthcare needs to improve its routines for follow-ups and information provision to both patients and their relatives.
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Lundin, Karin. "Experiences from Cochlear Implantation and Auditory Brainstem Implantation in Adults and Children : Electrophysiological Measurements, Hearing Outcomes and Patient Satisfaction." Doctoral thesis, Uppsala universitet, Institutionen för kirurgiska vetenskaper, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-275091.
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Cochlear implants (CIs) and auditory brainstem implants (ABIs) are prostheses for hearing used in patients with profound hearing impairment. A CI requires an operational cochlear nerve to function in contrast to an ABI. ABIs were initially designed for adult patients with neurofibromatosis type 2 (NF2), suffering from bilateral vestibular schwannomas. Now ABIs are also used for patients, both adults and children, with congenital cochlear malformations, cochlear nerve hypoplasia/aplasia, and cochlear ossification. The aims of this thesis are to evaluate hearing outcome in patients implanted with a CI after long-term deafness. An extended period of deafness has earlier been considered as a contraindication for CI surgery. Further, we analyzed if electrically evoked auditory brainstem responses (eABRs) can predict CI outcome and pinpoint the optimal selection of treatment such as CI or ABI. We also disclose our experiences from ABI surgery in Uppsala, such as implant use, hearing outcome, complications, and satisfaction among the patients. Finally, we evaluated the results and benefits of ABIs in non-NF2 pediatric patients. Results show that patients with an extended deafness period and durations over 20 years can achieve speech understanding and benefit from CIs. Patients with long-term deafness and limited years of hearing before deafness did not perform as well as those with shorter deafness duration and longer hearing experience did. eABR seems to have a definite role in the diagnostic armamentarium, to better consider alternative surgical strategies such as ABI. No eABR waveform predicted a poor CI outcome. There was no correlation between speech perception and eABR waveform latencies or eABR waveform quality. A majority of the ABI patients used their ABIs and benefited from them for at least some period. ABI assisted voice control in a majority of the full-time users and they reported improved understanding of speech with the implant switched on. No severe complications from ABI surgery or ABI stimulation were noted. The patients were generally satisfied, even if their hearing remained very limited. All pediatric patients but one used the implant continuously and benefited from it.
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Marx, Laura. "Parents’ Reflections of their Child’s Initial Visit to Metabolic Clinic: A Qualitative Study." University of Cincinnati / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1553513682882592.
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Houweling, Taco August Wilhelm. "Description of outcomes, patient experiences and related costs of care in low back pain patients undergoing chiropractic treatment in the UK." Thesis, University of Portsmouth, 2013. https://researchportal.port.ac.uk/portal/en/theses/description-of-outcomes-patient-experiences-and-related-costs-of-care-in-low-back-pain-patients-undergoing-chiropractic-treatment-in-the-uk(fc402d9b-0521-4b42-a57b-43ee7f641238).html.
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Rationale: The prevalence of low back pain and associated costs to society are high. Despite this, the number of studies investigating observational data on the quality and costs of care in routine health care services, such as chiropractic, is relatively small in comparison to the clinical trial evidence available on the effectiveness and cost-effectiveness of manual therapies for low back pain. Objective: To document the quality and cost of care in low back pain patients undergoing routine chiropractic care in the United Kingdom. Design: Prospective single cohort multi-centre study. Participants: A sample of 120 chiropractors and 421 patients. Methods: Following the development of a data collection instrument and a pilot study, patients suffering from low back pain were recruited by chiropractic clinics in the United Kingdom. Information was recorded using a patient self-report questionnaire at baseline prior to the initial consultation, and participants were mailed a follow-up questionnaire at three months. Health outcomes, patient experiences of the process and safety of care, and related costs in the intervening three month period were documented. Results: Four hundred and twenty-one patients formed the baseline sample, and 238 (57%) of these returned the follow-up questionnaire at three months. Statistically significant change scores (p = 0.0001) were seen for the health status measures including the Roland-Morris Disability Questionnaire, Bournemouth Questionnaire, EuroQol-5D and bothersomeness scale. One hundred and sixty-eight of 238 (70%) patients reported a clinically significant improvement on the Perceived Global Effect scale, and 73 (31%) of these were considered recovered anytime during the study period using definitions of recovery (i.e. acceptable quality of life, no disability and no pain for a whole month). One hundred and twenty-nine (54%) of patients at follow-up rated chiropractic care for their low back condition as ‘very helpful’. The number of patients rating the process of care (i.e. time and explanations given by chiropractor as well involvement in decisions about care) as ‘very good’ ranged from 157 to 168 (66% to 71% respectively of the patients at follow-up). One hundred and twenty-five (52%) of patients at follow-up reported adverse events of care (i.e. worsening of their back pain, stiffness, soreness and/or general discomfort immediately or shortly after the chiropractic treatment visits); however, only 13 (5%) of these reported that they were unable to carry on with their usual activities and/or work as a result of these events. On average, the total cost of care was £481.83 (95% CI = 333.17 to 639.42) per patient. Lost productivity resulting from time away from work was the most important contributor to these costs (59.6%). The cost of chiropractic visits was the second most important contributor, which accounted for nearly one-third of total costs (32.8%). Other health care usage including general practitioner visits, medical procedures and diagnostic imaging were responsible for a small proportion of total costs ranging from 0.4% to 1.6%. Conclusions: This programme of research is the first prospective study conducted in routine chiropractic practice simultaneously documenting information about health outcomes and patient experiences and costs of care. Patients improved markedly within the first three months of care and expressed high satisfaction with the chiropractic treatment and consultation they received. Chiropractic care was relatively safe, with common yet benign adverse events that had little influence on activities of daily living. Taken overall, patients receiving chiropractic care reported improvement at arguably reasonable cost, suggesting this approach to the health care of patients with low back pain be considered in the wider context of health care delivery in the United Kingdom.
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Siddiq, Shabnaz. "Experiences of Parents of Children Diagnosed with Inherited Metabolic Diseases (IMD) in Canada: Qualitative Description and Identification of Patient- and Family-Centred Outcomes." Thesis, Université d'Ottawa / University of Ottawa, 2016. http://hdl.handle.net/10393/34273.
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Objectives: The objectives of this thesis were to: (i) understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMDs), including perceptions of the health care system; and (ii) identify important patient/family-centred outcomes for measurement in future studies.
Methods: A qualitative study used semi-structured interviews to gain in-depth insight into caregivers’ experiences. In an adapted meta-synthesis study, the qualitative findings were integrated with the results of related research to identify priority outcomes.
Results: Twenty-one caregivers were interviewed. Participants described adjusting to the management of their child’s illness through specific coping strategies but reported stress related to social development. While generally satisfied with disease-specific care, participants described negative experiences with non IMD-specific health services. Health-related quality of life, parental coping, and specific experiences with health care emerged as high-priority outcomes.
Conclusions: This project contributes to the limited published literature on caregiver experiences with pediatric IMD and informs future patient-centred research.
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Guo, Na. "Measuring patient-reported outcomes in tuberculosis." Thesis, University of British Columbia, 2010. http://hdl.handle.net/2429/28757.
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Objectives: The primary objectives of this thesis were to: (1) measure health-related quality of life (HRQL) and health state utility values (HSUVs) among patients with active tuberculosis (TB) disease and latent tuberculosis infection (LTBI); (2) investigate the relationship betwee HRQL and adverse drug reactions (ADR)among active TB patients; (3) quantify patients' preferences for LTBI preventive treatment.
Methods: Two groups of patients were administered questionnaires: (1) Short-Form 36 (SF-36), Health Utility Index (HUI) and a Visual Analog Scale (VAS) were administered to 119 LTBI and 114 active TB patients at baseline and 3 months of their treatment. (2) A discrete choice experiment (DCE) survey was developed and administered among 214 LTBI patients. Conditional logit and latent class analysis were conducted to quantify respondents' preferences toward six treatment attributes (i.e. treatment length, clinic visit frequency, and risk of developing active TB, liver damage, skin rash and fatigue). Results: The baseline SF-36, HUI-2, HUI-3, Short-Form 6D (SF-6D) and VAS scores from active TB patients were significantly lower than those from LTBI patients. Major ADRs were shown to have significant impacts on active TB patients' HRQL and patients with lower baseline SF-36 scores were more likely to develop ADRs during the treatment. The three health utility instruments (HUI-2, HUI-3, and SF-6D) displayed acceptable construct validity when applying among TB population. However, they did not generate identical HSUV scores for the same individual. The DCE study results showed that all six attributes significantly influenced respondents' treatment decision and preference estimates were reasonable and consistent with our hypotheses. Substantial preference heterogeneity was observed among respondents. Latent class analysis assigned respondents into three groups and five socio-demographic factors significantly predicted the class assignment (i.e. origin of birth, education, employment, had children or not, and use of over-the counter medications).
Conclusions: Active TB disease and the treatment associated ADR have substantial impacts on patients' HRQL. HRQL measurements might have the potential to predict patients' treatment outcomes. The DCE technique provides a useful tool of understanding patients' preferences surrounding health care products. this work demonstrates the value and importance of incorporating patient-reported outcome measurements into clinical research and practice.
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Lingard, Elizabeth Anne. "Patient-Reported Outcomes for Total Knee Arthroplasty." Thesis, University of Newcastle Upon Tyne, 2009. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.506535.
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McColl, Elaine. "Patient reported outcomes : from selection to interpretation." Thesis, University of Newcastle Upon Tyne, 2005. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.417466.
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Inkrot, Simone [Verfasser]. "Patient-reported outcomes in heart failure / Simone Inkrot." Berlin : Medizinische Fakultät Charité - Universitätsmedizin Berlin, 2016. http://d-nb.info/1100388184/34.
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Peroutka, Christopher Ryan. "Patient Reported Outcomes in a Physically Active Population." Thesis, North Dakota State University, 2018. https://hdl.handle.net/10365/28741.
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OBJECTIVE: To examine the efficacy of patient-reported outcome measures in the physically active and to determine whether a relationship exists between general health-related quality of life and specific outcome measures. Instruments used were the DPA, the SF-36, the QuickDASH, and the ASES. METHODS: 42 NCAA Division I athletes completed outcome measures three separate times. Repeated-measures ANOVA was performed and bivariate Pearson correlations were calculated. Additionally, test-retest reliability and minimal detectable change were assessed. Significance was set at ? ? 0.05. RESULTS: Significant relationships were found between the DPA and several subscales of the SF-36. Participation in physical activity did not have an effect on scores as measured at different time points. CONCLUSIONS: The DPA and SF-36 are effective measures of health in physically active populations. The QuickDASH and ASES may not be reliable measures in these populations.North Dakota State University. Advanced Athletic Training program
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Lauck, Sandra Béatrice. "Change in patient-reported outcomes after cardioverter-defibrillator implantation." Thesis, University of British Columbia, 2013. http://hdl.handle.net/2429/43914.
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Some people, because they have a genetic predisposition or heart disease, are at high risk for cardiac arrhythmias that could cause their hearts to stop. The implantable cardioverter-defibrillator (ICD) is an effective therapy that recognises abnormal heart beats, can administer an electrical shock to stop a potentially lethal heart rhythm, and affords protection from the devastating consequences of sudden cardiac arrest. Patient-reported outcomes (PROs) are assessments provided directly by patients about various aspects of their health and quality of life. We sought to study the change in PROs after ICD implantation to identify people’s patterns of change, explore individual trajectories of change, and identify predictors of differences in individuals’ trajectories. The study was grounded in the Wilson and Cleary (1995) conceptual framework of quality of life and informed by the Patient-Reported Outcomes Measurement Information System domain framework. Using a prospective, longitudinal study design, data were obtained from 171 people undergoing ICD implantation at quaternary centres in British Columbia, Canada (55.5% response rate). PRO assessments were obtained immediately before implantation and at one, two, and six months following implantation. We employed individual growth modelling to analyse change within and between people. The participants had different physical, mental, and social health status PROs at baseline and, on average, demonstrated improvement. At most of the measurement occasions, the participants’ PROs remained poorer than those of average adult, urban-dwelling Canadians. There was significant individual variability in most of the trajectories, especially in the social functioning domains. Relative to men, women reported worse PROs initially (the relative mean difference in men’s and women’s scores ranged from 4.5% to 24.7% for 6 of the 12 indicators). Yet, the women’s rates of improvement were significantly faster than those of men. Women equalled or exceeded the men’s PROs at the six-month assessment (the relative mean difference ranged from 4.5% to 10.4%, depending on the PRO). Further research is needed to explore the individual change trajectories identified in this study, especially for those patients who did not improve over time, fully test the conceptual model that framed the research, and evaluate interventions aimed at improving PROs after ICD implantation.
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Field, Jonathan Roger. "Collecting and predicting patient reported outcomes in chiropractic practice." Thesis, University of Portsmouth, 2016. https://researchportal.port.ac.uk/portal/en/theses/collecting-and-predicting-patient-reported-outcomes-in-chiropractic-practice(29fdc29d-f462-4dd7-a3ac-a65876736cdb).html.
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The eight refereed publications and four abstracts of presentations which form the basis of this PhD each deal with patient health outcomes. The publications are drawn predominantly from practice based research in chiropractic services. In a systematic review of the impact of Patient Reported Outcome Measures (PROMs) on the process and outcomes of care for a single patient, Paper 1 describes this occurring across four domains; patient assessment and initial clinical decision making, tracking progress and evaluating current treatment efficacy, influencing the patient / clinician relationship and there is weak evidence to suggest they directly influence patient outcomes. Paper two is a descriptive review of the utility of PROMs to include their ability to improve communication and shared decision making in the patient / clinician relationship. Care Response is a novel, free to use multilingual electronic PROM system developed by the author. It has had significant impact in the chiropractic profession in Europe and Canada and has contributed data to 11 peer reviewed papers and four post graduate degrees (Abstract 1) Electronic PROM systems suffer from lower response rates than paper based systems. Abstract 2 reports a study looking at the impact of this missing information on the generalisability of the overall data collected. Non respondents to an emailed assessment 30 days after starting care were less likely to have had >30 days pain in the last year but were not otherwise significantly different from those returning electronic assessments. In a telephone survey comparing respondents and non respondents, patients global impression of change (PGIC) scores were identical and there was no statistical difference in pain scores. Paper 3 sought to ascertain if patient less likely to do well with chiropractic care could be identified from data routinely collected at baseline in chiropractic practice. Longer duration of symptoms at presentation, females with higher social disability scores and males with more adverse scores for depression were found less likely to describe themselves as much improved a month after starting care. In investigating for a relationship between outcome and components of the fear-avoidance model for chronicity in lower back pain, paper 4 found only a week relationship with catastrophisation at baseline however patient’s scores of catastrophisation, fear avoidance beliefs and low self efficacy just before their second visit were significantly associated with a poorer outcome. Paper 5 looking into a relationship between the risk category patients were placed into by the STarT Back Tool reported that whilst HIGH risk patients has more adverse scores for pain at presentation this rapidly faded and at 30 and 90 days there was no significant difference between the risk groups and patients reports of their recovery (PGIC) . Comparing the health outcomes of 8222 patients accessing chiropractic services either via the NHS or privately Paper 6 described those accessing a NHS route to have had symptoms for longer and more adverse scores across a range of health domains at presentation and to be less well 30 & 90 days later. However both NHS and private patient groups improved well and differences between the two disappeared when controlling for differences at baseline. Paper 7 sought to explore the ability of chiropractic clinicians working from 5 linked practices to identify those patients less likely to do well with care at the time of their initial assessment. It concluded that they generally failed to reliably predict outcomes with most practitioners doing no better than chance. The STarT Back Tool is increasingly being recommended to guide decisions as to care pathway for patients with spinal pain. Paper 8 looked to see if the timing of when this assessment was made had any impact on its ability to detect groups of patients responding differently when undergoing a course of chiropractic care. In the assessed population (n=749) attending 1 of 11 clinics in the UK there was a significant difference with ranking at the time of presentation being unrelated to outcome. When repeated a few days post initial visit over one third of patients had changed risk group with this subsequent group being found to be an independent predictor of improvement in multivariate analysis.
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Roberts, Natasha. "Implementing patient: Reported outcomes in a medical oncology setting." Thesis, Queensland University of Technology, 2021. https://eprints.qut.edu.au/208324/1/Natasha_Roberts_Thesis.pdf.
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This program of research implemented routine symptom self-reporting for oncology patients. Before this program of work, standardised reporting of symptoms had been reported in the research setting as promising to improve quality of life and survival. However it was unknown if this could also be done in the very complex setting of routine cancer care. Doctors, nurses, allied health professionals and patients were interviewed and surveyed to make this intervention useful and usable. The study team facilitated successful integration of this intervention into the allocated clinics, which improved how the healthcare teams addressed patients’ symptoms.
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Gutacker, Nils. "Four essays on performance measures based on patient-reported outcomes." Thesis, University of York, 2015. http://etheses.whiterose.ac.uk/11620/.
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Agency relationships, and associated information symmetries, exist in many areas of economic activity including healthcare. Information on healthcare providers’ relative performance can be used to reduce information asymmetries and hold providers to account. This collection of essays focuses on the appropriate derivation and use of performance measures to incentivise healthcare providers in the English National Health Service (NHS). It gives special consideration to the role of patient self-reported health status measures to assess the differential effect of healthcare providers’ care on their patients’ health. The thesis explores three themes: the relationship between variation in resource use and quality, the appropriate assessment and reporting of multidimensional hospital performance, and the use of performance information to motivate hospitals in a public reporting context. Chapter 2 examines cost variation between hospitals for the four surgical procedures covered by the national patient-reported outcome measures (PROM) programme. It explores the empirical relationship between costs and patient health outcomes to assess the claim of hospital providers that their higher costs are justified by better quality of care. Chapter 3 sets out an empirical methodology to conduct provider performance comparisons when there are multiple dimensions of health-related quality of life affected by treatment. It discusses the advantages and disadvantages of analysing disaggregate PROM data for the purpose of informing prospective patients, clinicians and managers. Chapter 4 extends the previous chapter by providing a methodology for assessing and summarising multidimensional provider performance using dominance criteria. This methodology is then applied to study the performance of providers of hip replacement surgery with respect to length of stay, emergency readmissions, waiting time and improvements in PROMs. Chapter 5 estimates the demand elasticity of providers with respect to quality. It makes use of choice models to assess the usefulness of disseminating hospital PROM scores to prospective patients as a market-based incentive for providers to compete on quality.
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Klooster, Peter Meindert ten. "Interpreting patient reported outcomes in rheumatology Peter Meindert ten Klooster." Enschede : University of Twente [Host], 2008. http://doc.utwente.nl/59001.
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Iyasere, Osasuyi Uyigue. "Cognitive impairment and patient reported outcomes in advanced kidney disease." Thesis, Imperial College London, 2017. http://hdl.handle.net/10044/1/56211.
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Shared decision making is now an integral part of renal practice. Quality of life is therefore an important consideration, especially for older patients. This thesis provides insight into the influence of dialysis modality on quality of life in older people with advanced kidney disease. It also explores the relationship between cognitive impairment and dialysis. Firstly, quality of life measures were compared between older patients on assisted peritoneal dialysis and haemodialysis. Patients on assisted peritoneal dialysis were matched to haemodialysis patients by baseline characteristics. Quality of life assessments were carried out quarterly for 2 years. Following multivariate analyses, there was no consistent difference in quality of life between patients on haemodialysis and assisted peritoneal dialysis. The second study assesses the influence of dialysis on cognition and patient reported outcome measures in patients with advanced kidney disease. Patients on haemodialysis, peritoneal dialysis or with chronic kidney disease (eGFR < 30ml/min) patients were recruited. Study participants were assessed 4 monthly for up to 2 years. Mixed model analysis showed that cognitive function declined faster in dialysis patients compared with non-dialysis patients with chronic kidney disease. In the dialysis cohort, executive function was better preserved in patients on peritoneal dialysis compared with haemodialysis patients. Dialysis did not consistently influence trends in patient reported outcome measures during follow up. Finally, the relationship between cognition and decision making capacity was explored in a small pilot of renal patients. Cognition and decision making capacity were assessed by the Montreal Cognitive Assessment and Macarthur Competence Assessment tools respectively. Patients with lower cognitive scores tended to have lower capacity assessment scores, albeit without reaching statistical significance. In older patients with advanced kidney disease, risk factors other than dialysis modality, influence quality of life. Cognitive decline, one such risk factor, may accelerate with dialysis depending on modality. It may also affect decision making. These findings highlight the need to screen for geriatric syndromes in older patients with renal disease.
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Glenn, L. Lee. "Patient-Reported Medical Outcomes According to Physician Type and Region." Digital Commons @ East Tennessee State University, 1995. https://dc.etsu.edu/etsu-works/7548.
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The purpose of the present study was to determine whether patients with common foot disorders have different medical outcomes depending on whether podiatrists, orthopedic surgeons, or other physicians provided their medical care in rural or urban areas. A validated medical effectiveness score was formulated using indirect standardization of risk-adjusted morbidity, based on patient reports from a national random household interview survey of 3,270 subjects. Patients in rural and urban areas did not differ significantly in medical outcomes across provider types, but there was a trend for patients in rural areas to have poorer outcomes. The medical effectiveness score of podiatrists was 3.9 times higher (indicating more beneficial outcomes) than that of orthopedic surgeons or other physicians (p < 0.01). Patients that visited podiatrists for common foot problems reported significantly more beneficial outcomes than those who visited other types of health care providers.
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Singh, Jeshika. "Development of a descriptive system for patient experience." Thesis, Brunel University, 2018. http://bura.brunel.ac.uk/handle/2438/16385.
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Efficient allocation of public resources requires identification, measurement and quantification of costs and benefits of alternative programs. Patient reported outcomes (PROs) are routinely incorporated into economic evaluations of health technologies, but patient experience is often overlooked. This thesis aims to develop a descriptive system for patient experience that can be valued and used to inform economic evaluation. The generation and selection of items is key in the development of any PRO measure. The thesis provides a contemporary overview of recommended methods and those actually used by instrument developers. Frequently a staged approach is used to establish dimensions first, using exploratory factor analysis, followed by item selection using item response theory (IRT), Rasch or structural equation modelling (SEM). I demonstrate the use of different methods for item selection and its underlying mechanics, followed by comparison of the methods. An existing patient dataset, the Inpatient survey (2014) that collected information on nearly 70 aspects of healthcare delivery from NHS users was used. Logistic regression analyses were applied with respondents' rating of overall patient experience specified as dependent variable. Advanced statistical analyses focussed mostly on patients who had an operation or procedure. Latent construct or dimensions were derived and measurement model was confirmed using confirmatory factor analysis. IRT and factor analysis were employed in each one-factor model for item selection. Regression analyses identified many significant variables but most overlapped conceptually. An 11 and 8 factor model for patients with A&E and planned admissions respectively was determined. A generalised partial credit model and a factor analysis model identified different items to include in each dimension. Broadly the items identified by different methods related to respect, comfort and clear communication to patients. This thesis presents descriptive systems for patient experience that is amenable to valuation. It also demonstrates that different patient experience instruments are generated based on patient population used and item selection technique adopted.
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Parameswaran, Rajeev. "Clinical and patient-reported outcomes after minimally invasive oesophagectomy for cancer." Thesis, University of Bristol, 2011. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.544337.
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Froud, Robert. "Improving interpretation of patient-reported outcomes in low back pain trials." Thesis, Queen Mary, University of London, 2009. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.511378.
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Reininghaus, Ulrich. "Improving the measurement of patient-reported outcomes in patients with psychosis." Thesis, Queen Mary, University of London, 2010. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.535513.
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Henderson, Alastair. "Low dose-rate brachytherapy for early prostate cancer : patient selection and assessment of patient reported outcomes." Thesis, University of Surrey, 2007. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.486095.
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Introduction I Low dose-rate brachytherapy is an accepted treatment for early prostate cancer in the UK. This thesis reports studies of clinical outcome from this treatment in a UK centre. Patients and Methods Prospective observational study in three areas of outcome for patients undergoing low' dose-rate (LDR) seed brachytherapy implants: . 1. Quality of life questionnaires were used to prospectively assess toxicity of 3 LDR brachytherapy treatments: monotherapy+l- androgen deprivation+lexternal beam radiotherapy in a longitudinal study. ii. Post-implant catheter use was correlated with preoperative variables (prostate volume, androgen deprivation, urodynamic obstruction status and IPSS score) and treatment indices (prostate D90, Urethral DIO, D25, and D50). 1lI. Bicalutamide and goserelin for pre-brachytherapy prostate volume reduction. Results General health related quality of life was 'a little' to 'moderately' decreased 6weeks after brachytherapy, but unchanged by clinically significant amounts >9 months after any brachytherapy treatment. Permanent problematic urinary incontinence «4%) and significant bother from use of incontinence aids «3%) were rare after any - 4- brachytherapy subtype. Urinary problems, principally frequency and urgent micturition worsened after brachytherapy with peak 'very much' worsened symptoms at 6-weeks post treatment and improvements to 'a little' worse than baseline at 1-2 years. Sexual function declined significantly in potent men with partners who underwent brachytherapy. By 2 years post brachytherapy, almost half of men who were potent before brachytherapy as monotherapy started using phosphodiesterase inhibitors (e.g. Viagra®). Despite this medication, at least 47% rep'orted moderatesevere erectile dysfunction. Postoperative need for catheterisation was predicted by elevated prostate volume (>35cc), raised IPSS score (>7 vs. <7), and urodynamic obstruction (vs. equivocal or unobstructed patients). Bicalutamide produced smaller reductions in prostate volume than Goserelin (-8 vs. -26% reduction in volume). Conclusions Clinically significant changes in HRQOL were present at >12m but they were of small magnitude except for sexual side effects which continued to be common and marked. Use of an IPSS score, prostate volume and urodynamic assessment may improve selection of patients for brachytherapy. Bicalutamide is superior to goserelin for prostate cytoreduction prior to brachytherapy.
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Turk, E. (Eva). "Patient reported outcomes in elderly patients with Diabetes Mellitus Type 2 in Slovenia." Doctoral thesis, Oulun yliopisto, 2013. http://urn.fi/urn:isbn:9789526203263.
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Abstract The aim of this thesis was to measure patient reported outcomes, such as health related quality of life and general diabetes knowledge of elderly diabetes mellitus type 2 (DMT2) patients in Slovenia. Patient reported outcomes demonstrate patient perspectives when evaluating the delivery of care. In Slovenia, a new, multidisciplinary model of chronic care was introduced in 2011, which yet needs to demonstrate the efficiency, care improvement and cost reduction. Thus, another aim of the study was to research if multidisciplinary teams in diabetes care are economically viable. To achieve the above, the study was divided into 4 subprojects. Firstly, the general level of diabetes knowledge of elderly DMT2 patients (n=179) was measured. Secondly, the reliability and validity of generic, European Quality of Life- 5 Dimensions (EQ-5D), and disease specific, Audit on Diabetes Dependent Quality of Life (ADDQoL ) instruments were examined. Thirdly, health related quality of life of elderly diabetic patients (n=285) was assessed. Fourthly, the systematic literature review on the cost-effectiveness of multidisciplinary teams was conducted. The data were collected during the period 2011–2012. The main contributions of the current thesis can be summarised as follows: This was the first study to measure general diabetes knowledge of elderly DMT2 patients in Slovenia. The results showed that the place of living does not have an impact neither on diabetes knowledge nor the health related quality of life of these patients. Secondly, a pioneering example of measuring health related quality of life (HRQoL) in elderly diabetic patients in Slovenia, using a validated and reliable instrument (ADDQoL) was provided. A study to evaluate the relationships between diabetic and other co-existing chronic medical conditions on health related quality of life was performed. As part of that study, the reliability and validity of the instruments (EQ-5D and ADDQoL) were measured, and the analysis showed that both instruments are reliable. Thirdly, a systematic way of finding evidence for understanding the cost-effectiveness of multidisciplinary teams was applied. The results of the literature review show weak improvements in the economic outcomes. In general, the thesis contributes to the improved understanding of patient reported outcomes in elderly diabetic patients, which can be a measure in assessing diabetes care program in Slovenia, and offers a basis for a national evaluation of the Model Practices. Furthermore, patient reported outcomes of elderly diabetic patients is important to Slovenian decision makers to identify and implement appropriate interventions for achieving better management of diabetes and ultimately improving the quality of life of diabetes patientsTiivistelmä Tutkimuksen tarkoitus oli mitata iäkkäiden tyypin 2 diabetespotilaiden itse ilmoittamia tuloksia, kuten terveyteen liittyvä elämänlaatu ja yleinen diabetekseen liittyvä tietämys Sloveniassa. Tulokset valottavat potilaiden näkökulmaa hoidon arvioinnissa. Sloveniassa otettiin 2011 käyttöön monitieteellinen hoitomalli, jonka tehoa sekä kykyä parantaa hoitoa ja vähentää hoitokustannuksia ei ole osoitettu. Toisena tavoitteena oli selvittää, onko moniammatillisten tiimien käyttö diabeteshoidossa taloudellisesti järkevää. Tutkimus jaettiin neljään osaprojektiin. Ensin mitattiin iäkkäiden tyypin 2 diabetespotilaiden (n=179) yleistä diabetestietämystä. Toiseksi selvitettiin geneerisen European Quality of Life- 5 Dimensions- (EQ-5D) ja diabeteskohtaisen ADDQoL -mittarin luotettavuus ja validiteetti. Kolmanneksi arvioitiin iäkkäiden diabetespotilaiden (n=285) terveyteen liittyvää elämänlaatua. Neljänneksi tehtiin moniammatillisten tiimien kustannus¬tehokkuutta koskeva systemaattinen kirjallisuuskatsaus. Tiedot kerättiin vuosina 2011–2012. Tulokset voidaan tiivistää seuraavasti: Kyseessä oli ensimmäinen tutkimus, jossa mitattiin iäkkäiden tyypin 2 diabetespotilaiden yleistä diabetestietämystä Sloveniassa. Tulosten mukaan asuinpaikka ei vaikuta potilaiden diabetestietämykseen tai terveyteen liittyvään elämänlaatuun. Toiseksi, Sloveniassa toteutettiin pioneerihanke, jossa mitattiin iäkkäiden potilaiden terveyteen liittyvää elämänlaatua (HRQoL) validoidun ja luotettavan instrumentin (ADDQoL) avulla. Tutkimuksessa selvitettiin diabeteksen ja muiden pitkäaikaissairauksien yhteisvaikutusta terveyteen liittyvään elämänlaatuun. Osana tutkimusta selvitettiin instrumenttien (EQ-5D ja ADDQoL) luotettavuus ja validiteetti. Molemmat osoittautuivat luotettaviksi. Kolmanneksi, tutkimuksessa etsittiin systemaattisesti näyttöä moniammatillisten tiimien kustannustehokkuuden arvioimiseksi. Kirjallisuuskatsauksen mukaan taloudellinen tulos paranee vain vähän. Tutkimus lisää tietoa potilaiden ilmoittamista tuloksista iäkkäiden diabetespotilaiden kohdalla, mitä voidaan käyttää diabeteshoito-ohjelman arvioinnissa Sloveniassa sekä mallikäytäntöjen kansallisen arvioinnin perustana. Diabetespotilaiden itse ilmoittava terveystieto on Slovenian päätöksentekijöille tärkeää sopivien interventioiden löytämisessä ja toteuttamisessa, kun halutaan parantaa diabeteshoitoa ja potilaiden elämänlaatua
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Andijani, Reem Ibrahim. "Lip Repositioning Surgery for Excessive Gingival Display: Clinical, Radiographic, and Patient-Reported Outcomes." The Ohio State University, 2018. http://rave.ohiolink.edu/etdc/view?acc_num=osu1530635995724862.
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Chang, Sungwon. "An integrated approach to outcome evaluation : incorporating patient reported outcomes in heart failure." Thesis, Curtin University, 2012. http://hdl.handle.net/20.500.11937/2606.
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Globally individuals and health care systems are facing the burden of chronic illness. The impact of the increasing burden of non-communicable diseases is experienced by individuals and health care systems. Across the globe health care systems are struggling to meet the increasing demands for services within the confines of rising costs and needs for accountability. Beyond costs and treatment allocations, there is an increasing mandate to provide care that is patient centred and appropriate to the needs of the individual. The Innovative Care in Chronic Condition (ICCC) framework has been successful in driving health care reforms to meet the needs of individuals with chronic illness internationally. Deriving metrics that allow monitoring of conditions at the level of the patient, provider and health care system are of increasing importance. Comprising this thesis is a series of studies to investigate outcomes that includes the patient’s perspective in the evaluation of clinical interventions. To achieve this, chronic heart failure, was used as an exemplar of a chronic condition.Chronic heart failure (CHF) is the final common pathway for many cardiac conditions. As a consequence has emerged as a major public health problem and represents as an excellent exemplar of living with a chronic illness. CHF patients commonly experience high levels of ill-health, disability and mortality placing a heavy burden on health care systems. Hospitalisations are frequent and costly to both CHF patients and to society. People with CHF live with a limited quality of life and physical ability and the prognosis for CHF is poor. Given the nature of debilitating symptoms, and their potential impact on physical, social and psychological aspects of life, patient’s perspective in outcome assessment is essential in providing effective care.Specifically this study sought to: •Examine patient reported outcomes in clinical management and in clinical research •Investigate patient important outcomes, their utility, relevance and acceptability amongst patients, clinicians, researchers and administrators •Test composite outcomes model that integrate patient important outcomes in clinical trials researchPatient reported outcomes (PROs) is a strategy to capture the patient perspective and experience on their health status. The use of PROs can be incorporated in clinical assessments, monitoring of clinical progress as well as clinical research. Despite their frequent use in research, evidence suggests that to date they have had a limited influence on clinical practice and policy. As part of this thesis an integrative review was conducted to explore the potential utility of PROs at the policy level. By using the ICCC framework, PROs were indeed essential to improve the management of CHF at the micro, meso and macro levels of decision making.One of the key challenges in using PROs and outcomes important to individuals in CHF is limited methodological and reporting quality. This is cited as a reason why many clinicians are sceptical of the utility of PROs. To explore issues in reporting a review was conducted on RCTs of pharmacological therapy in CHF that reported health related quality of life (HRQoL) as a primary or secondary outcome. Using the Minimum Standard Checklist for evaluating the quality of reporting of HRQoL outcomes resulted in 26 (19.1%) studies being considered ‘very limited’ in terms of methodological and reporting rigour, and 91 (66.9%) were evaluated as ‘limited’ and only 19 (14.0%) studies were considered to be of a ‘probably robust’ quality. In fact, the quality of HRQoL reporting has not improved over time. Some of the issues identified are limited discussions, methodological shortcomings, and poor HRQoL reporting. This review has underscored the importance of standardising of the reporting of HRQoL measures.Although capturing the patient’s perspective via PROs is important, they may not be the only outcome measures important to patients. Currently, no single CHF outcome measure captures all dimensions of the quality of care from the patient’s perspective. To identify outcome measures in CHF deemed important to patients, a structured literature review was undertaken. The conceptual and methodological challenges and opportunities in each outcome measure were identified as important to patients with CHF. That is mortality, hospitalisation and PROs were identified as important to patients but also meaningful and relevant to the provider and health care system as well. These outcome measures were proposed as a core outcome set that represent the minimum set of outcomes that should be measured and reported in CHF.A number of composite outcome measures have been developed to capture the perspective of the patient, clinician as well as including objective measures of health. Three validated composite outcomes, the Packer’s Score, Cleland’s Patient Journey and the composite endpoint used in the African American Heart Failure Trial (A-HeFT) were examined in a secondary analysis of a prospective, multi-center randomized controlled trial of 280 hospitalized CHF patients in the Which Heart failure Intervention is most Cost-effective & Consumer Friendly in Reducing Hospital Care (WHICH?) Trial in order to assess the comparability and interpretability of the measures in a pragmatic clinical trial. Correlation coefficients demonstrated substantial associations amongst all three composite endpoints. Although there was a considerable agreement across the three measures when estimating deteriorating condition, these was less when estimating improvements.This thesis has described both the importance and complexity of including outcome measures that are meaningful to patients in both the assessment of individuals’ needs, testing interventions, monitoring outcomes and assessing process and outcome measures at a health systems level. This thesis has also extended the discussion and debate around PROs to discuss Patient Important Outcomes, which is outcomes that patients notice and for which they would be willing to undergo a treatment with associated risk, cost, or inconvenience for it to be the only thing that changed. Using CHF as an exemplar has provided useful insights into the dimensions and complexities of measuring outcomes in chronic and complex conditions. As the burden of chronic disease continues to increase refining the metrics of outcome measurements will be equally as important as refining novel therapies. This will be critical to develop and implement interventions to meet the growing numbers of people living with chronic illness.
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Patel, Neil. "Evaluation of saliva biomarkers in chronic obstructive pulmonary disease : correlation to patient reported outcomes." Thesis, Keele University, 2016. http://eprints.keele.ac.uk/2467/.
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COPD is a debilitating chronic respiratory disease with a systemic footprint. COPD is a highly heterogeneous disease but invariably its management involves a one-size fits all approach. This fails to address individual variations in disease progression, symptom burden and functional decline. There remains a need for sensitive monitoring tools that could provide personalised care based on patients’ particular phenotypes and informative self-management. This thesis has standardised collection protocols and processing for saliva, a complex bodyfluid which is readily accessible and user-friendly for near-patient testing. I have modified immunoassays to work in saliva with demonstrable reproducible results for quantification of C-reactive protein, Procalcitonin and Neutrophil Elastase. Symptom assessment is crucial in longitudinal self-monitoring of COPD. I designed a novel patient wellbeing scale incorporated into an electronic self-assessment diary, which was embraced by patients as improving symptom change recognition, education and self-management. Using sophisticated analytical tools, I have attempted to cluster/phenotype disease trajectory paths driven by a compilation of symptom scores, spirometric volumes and saliva biomarker levels and produced novel patientspecific multidimensional composite scores with significant correlation to COPD disease severity. Prodromal changes in FEV1, salivary biomarkers and self-assessment scores were reproducibly demonstrated, with potential to predict exacerbation onset. These results could be exploited for the development of a much-needed personalised COPD monitoring eco-system, which isolates early deteriorations and prompts timely interventions, leading to beneficial disease outcomes. Patient-researcher iterative co-design has been key throughout this thesis. One outcome of this relationship is the design and production of a bespoke integral saliva collector prototype which could substitute laboratory-based processing of saliva samples in readiness for analyte testing. In conclusion, this thesis has created the necessary tools to improve the classification and monitoring of COPD, opening new avenues for proactive patient self-management and providing the basis for future personalised and stratified care.
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Wahlgren, Thomas. "High dose rate brachytherapy boost for localized prostate cancer : clinical and patient-reported outcomes/." Stockholm, 2006. http://diss.kib.ki.se/2006/91-7140-931-9/.
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Olariu, Elena 1984. "Using patient reported outcomes (PROs) to improve recognition of common mental disorders in primary care." Doctoral thesis, Universitat Pompeu Fabra, 2016. http://hdl.handle.net/10803/459066.
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The main objective of this thesis was to generate evidence on the recognition of common mental disorders (mood and anxiety disorders) in non-specialized healthcare settings and to explore solutions for its improvement.
We systematically reviewed the worldwide recognition of anxiety disorders by general practitioners over a period of 34 years. The data we used to investigate ways to improve the detection levels of common mental disorders in this setting came from the Inventory of Depression and Anxiety Symptoms (INSAyD) project. This is a prospective study conducted in a convenience sample of patients consulting several health care settings for mental health complaints in Barcelona, Spain in 2011-2013. The objective of this project was to develop shorter, easier to use and yet more informative instruments on the diagnosis and severity assessment of common mental disorders.
This thesis showed that common mental disorders are substantially under-diagnosed in non-specialized healthcare settings. It also indicated that the use of PROs measures can improve the ability of practitioners to diagnose common mental disorders in non-specialized healthcare settings, being a feasible and valid solution to the under-diagnosis of common mental disorders in this setting.El objetivo de esta tesis fue aportar evidencia acerca de la detección de los trastornos mentales más comunes en entornos no-especializados y de investigar soluciones para su mejora. Se realizó una búsqueda sistemática de la literatura sobre la precisión diagnóstica de trastornos de ansiedad en atención primaria a nivel mundial que cubrió el periodo 1980 – 2014. El proyecto El Inventario de Síntomas de Ansiedad y Depresión (INSAyD) proporciono los datos que se usaron para determinar formas de mejora para la detección de trastornos mentales comunes en niveles de atención no-especializados. El proyecto INSAyD es un estudio prospectivo con pacientes que acudieron por síntomas de depresión y ansiedad a distintos niveles de atención en Barcelona en 2011-2013. El objetivo de este proyecto fue desarrollar instrumentos más cortos, más informativos y más fáciles de usar que diagnostique y evalúe la gravedad de los trastornos mentales comunes. Esta tesis doctoral demostró que los trastornos mentales comunes están infradiagnosticados en entornos no-especializados. Además, demostró que el uso de medidas PRO mejora la capacidad diagnostica de los profesionales de salud en entornos no-especializados, siendo una solución altamente valida y viable al frecuente infradiagnóstico de los trastornos mentales comunes en estos niveles asistenciales.
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Liu, Shao-Hsien. "Impact of Intra-Articular Injection Use on Patient-Reported Outcomes Among Patients with Knee Osteoarthritis." eScholarship@UMMS, 2017. https://escholarship.umassmed.edu/gsbs_diss/897.
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Background: Knee osteoarthritis (OA) is the most common type of OA and is a major cause of pain and thus results in disability for daily activities among persons living in the community. OA currently has no cure. In addition to the conflicting recommendations from clinical guidelines, evidence about the extent to which long-term use of intra-articular injections improves patient outcomes is also lacking.
Methods: Using data from the Osteoarthritis Initiative (OAI), marginal structural models (MSMs) applying inverse probability treatment weights (IPTW) were used to examine the effectiveness of intra-articular injections and changes in symptoms over time. The specific aims of this dissertation were to: 1) evaluate longitudinal use of intra-articular injections after treatment initiation among persons with radiographic knee OA; 2) quantify the extent to which intra-articular injection relieves symptoms among persons with radiographic knee OA; and 3) evaluate the performance of missing data techniques under the setting of MSMs.
Results: Of those initiating injections, ~19% switched, ~21% continued injection type, and ~60% did not report any additional injections. For participants initiating corticosteroid (CO) injections, greater symptoms post-initial injection rather than changes in symptoms over time were associated with continued use compared to one-time use. Among participants with radiographic evidence of knee OA, initiating treatments with either CO or hyaluronic acid (HA) injections was not associated with reduced symptoms compared to non-users over two years. Compared to inverse probability weighting (IPW), missing data techniques such as multiple imputation (MI) produced less biased marginal causal effects (IPW: -2.33% to 15.74%; -1.88% to 4.24%). For most scenarios, estimates using MI had smaller mean square error (range: 0.013 to 0.024) than IPW (range: 0.027 to 0.22).
Conclusions: Among participants with radiographic evidence of knee OA living in the community, the proportion of those switching injection use and one-time users was substantial after treatment initiation. In addition, initiating injection use was not associated with reduced symptoms over time. With respect to issues of missing data, using MI may confer an advantage over IPW in MSMs applications. The results of this work highlight the importance of using comparative effectiveness research with non-experimental data to study these commonly used injections and may help to understand the usefulness of these treatments for patients with knee OA.
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Liu, Shao-Hsien. "Impact of Intra-Articular Injection Use on Patient-Reported Outcomes Among Patients with Knee Osteoarthritis." eScholarship@UMMS, 2003. http://escholarship.umassmed.edu/gsbs_diss/897.
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Background: Knee osteoarthritis (OA) is the most common type of OA and is a major cause of pain and thus results in disability for daily activities among persons living in the community. OA currently has no cure. In addition to the conflicting recommendations from clinical guidelines, evidence about the extent to which long-term use of intra-articular injections improves patient outcomes is also lacking.
Methods: Using data from the Osteoarthritis Initiative (OAI), marginal structural models (MSMs) applying inverse probability treatment weights (IPTW) were used to examine the effectiveness of intra-articular injections and changes in symptoms over time. The specific aims of this dissertation were to: 1) evaluate longitudinal use of intra-articular injections after treatment initiation among persons with radiographic knee OA; 2) quantify the extent to which intra-articular injection relieves symptoms among persons with radiographic knee OA; and 3) evaluate the performance of missing data techniques under the setting of MSMs.
Results: Of those initiating injections, ~19% switched, ~21% continued injection type, and ~60% did not report any additional injections. For participants initiating corticosteroid (CO) injections, greater symptoms post-initial injection rather than changes in symptoms over time were associated with continued use compared to one-time use. Among participants with radiographic evidence of knee OA, initiating treatments with either CO or hyaluronic acid (HA) injections was not associated with reduced symptoms compared to non-users over two years. Compared to inverse probability weighting (IPW), missing data techniques such as multiple imputation (MI) produced less biased marginal causal effects (IPW: -2.33% to 15.74%; -1.88% to 4.24%). For most scenarios, estimates using MI had smaller mean square error (range: 0.013 to 0.024) than IPW (range: 0.027 to 0.22).
Conclusions: Among participants with radiographic evidence of knee OA living in the community, the proportion of those switching injection use and one-time users was substantial after treatment initiation. In addition, initiating injection use was not associated with reduced symptoms over time. With respect to issues of missing data, using MI may confer an advantage over IPW in MSMs applications. The results of this work highlight the importance of using comparative effectiveness research with non-experimental data to study these commonly used injections and may help to understand the usefulness of these treatments for patients with knee OA.
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Liegl, Gregor [Verfasser]. "Construct validity of item banking approaches for the assessment of patient-reported outcomes / Gregor Liegl." Berlin : Medizinische Fakultät Charité - Universitätsmedizin Berlin, 2018. http://d-nb.info/1176635220/34.
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Vanier, Antoine. "The concept measurement, and integration of response shift phenomenon in Patient-Reported Outcomes data analyses : on certain methodological and statistical considerations." Thesis, Nantes, 2016. http://www.theses.fr/2016NANT1009/document.
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Les données rapportées par les patients sont maintenant fréquemment utilisées en recherche biomédicale. Ces instruments permettent la mesure de concepts subjectifs tels que la qualité de vie, les niveaux d’anxiété, de douleur, de fatigue. L’interprétation d’une différence de score au cours du temps était basée sur l’hypothèse que le sens des concepts et échelles restai stable au cours du temps dans l’esprit des individus. Cette hypothèse semble aujourd’hui dépassée. L’auto-évaluation d’un concept est maintenant comprise comme contingente de la représentation subjective qu’à un sujet du dit concept, cette représentation pouvant changer au cours du temps, surtout après avoir vécu un évènement de santé : ce phénomène est connu comme le « response shift ». Depuis la fin des années 1990s, l’investigation de ce phénomène est devenue un sujet d’intérêt majeur en psychométrie. Si des développements ont vu le jour, ce sujet reste récent et donc accompagné de débats variés que ce soit sur le plan théorique ou méthodologique. Aussi, l’objectif général de cette thèse est d’investiguer certaines problématiques méthodologiques et statistiques liées au response shift. Ce manuscrit est composé de trois travaux principaux : un état de l’art et une synthèse des travaux conduits à un niveau international depuis que le response shift est étudié, une étude pilote des performances de la procédure d’Oort (une méthode populaire de détection de response shift) par simulations et un travail théorique sur les liens entre response shift et complexité sémantique des concepts mesurés et items utilisésPatient-Reported Outcomes are increasingly used in health-related research. These instruments allow the assessment of subjective concepts such as Health-Related Quality of Life, anxiety level, pain or fatigue. Initially, the interpretation of a difference in score over time was based on the assumption that the meaning of concepts and measurement scales remains stable in individuals’ minds over time. This assumption has been challenged. Indeed, the self-assessment of a concept is now understood as a contingency of the subjective meaning a subject has of this concept, which can change over time especially as a result of a salient medical event: the “response shift” phenomenon. Since the end of the 1990s, researches on response shift phenomenon has become of prime interest in the field of health-related research. If developments have been made, it is still a young field with various scientific debates on a theoretical, methodological and statistical level. Thus, the broad objective of this thesis is to investigate some methodological and statistical issues regarding response shift concept, detection and integration into PRO data analyses. The manuscript is composed of three main works: a state of the art and synthesis of the works conducted at an international level since response shift phenomenon is investigated, a pilot study investigating the statistical performances of the Oort’s Procedure (a popular method of response shift detection using Structural Equation Modeling) by simulations and a theoretical work about the links between response shift occurrence and semantic complexity of concepts measured and items used
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Gates, Lucy. "Do clinical foot and ankle assessments improve the prediction of patient reported outcomes in knee arthroplasty?" Thesis, University of Southampton, 2015. https://eprints.soton.ac.uk/388299/.
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Knee arthroplasty (KA) has been considered to be a successful and cost-effective intervention for individuals with severe end stage Osteoarthritis (OA). A number of clinically important predictors of outcomes following KA have been established, however there are still other factors to be identified to improve our ability to recognise patients at risk of poor KA outcomes. Although the relationship between foot, ankle and knee kinematics has become widely accepted, it is not known whether foot and ankle status affect KA outcomes. This thesis therefore aims to determine whether clinical foot and ankle measures are useful in predicting patient reported outcomes following KA. A formal literature review was firstly undertaken to identify current methods of assessing musculoskeletal foot and ankle status. Findings of the review revealed an absence of a standardised assessment protocol and a lack of agreement and validity for many current clinical measures. In response to this an international expert consensus study was undertaken to produce an agreed set of objective clinical musculoskeletal foot and ankle assessment measures to form a new protocol. Two measures identified from the review, and agreed via expert consensus, as the most robust assessment methods- the Foot Posture Index (FPI) and ankle dorsiflexion, were introduced to a large prospective cohort of patients awaiting knee arthroplasty, in addition to foot pain questions. Results show that ankle dorsiflexion and foot posture were not associated with one year knee outcomes, however pre-operative foot pain was associated to outcome; the presence of foot pain increased the risk of a poor post-operative clinical outcome. Findings suggest that it would be beneficial to address foot pain prior to surgery to reduce the risks associated with a poor outcome. Further work would be beneficial to establish the sequential link between foot pain and knee OA in order to inform the most appropriate method of the conservative management.
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Gilbert, Alexandra Jane. "Optimising individual treatment regimes and patient outcomes through the use of patient-reported toxicity assessments in patients treated with pelvic radiotherapy." Thesis, University of Leeds, 2016. http://etheses.whiterose.ac.uk/13268/.
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The primary objectives of this thesis are to develop a systematic method for patients to self-report pelvic radiotherapy adverse events (AE) using electronically collected patient reported outcomes (PROs) in clinical practice and to evaluate patient-reported toxicity in association with radiotherapy dosimetric data and clinical factors. Before testing the research objectives in two observational studies, important practical and methodological issues were addressed. Analysis from systematic and literature reviews, content analysis of three validated PRO systems and interviews with health professionals found the European-Organisation-for-Research-and-Treatment-of-Cancer-Quality-of-Life-Questionnaires (EORTC-QLQ) C30 and cancer-specific modules to have the most effective coverage of acute and late AE for patient treated with radiotherapy for anal, rectal, endometrial and cervical cancer. Qualitative analysis of patient cognitive interviews found the EORTC-QLQ system was acceptable to patients and revealed discrepancies in toxicity grading between patient and clinician (using the Common-Terminology-Criteria-of-Adverse-Events (CTCAE)) might be due to inherent differences in the grading descriptions between the scoring systems. Electronic methods for collection and presentation of PRO data were developed alongside technology to improve clinical data capture from electronic health records (EHR). A pilot study of 31 patients proved it was feasible to collect electronic and paper PRO data and integrate results into individual EHRs. A protocol for organ at risk (OAR) contouring and methods used for dose-volume-histogram (DVH) export were developed. The cross sectional (n=315) and prospective studies (n=129) found bowel urgency and sexual dysfunction to be the late AE most commonly reported by patients. The cross sectional study piloted the application of principal component analysis to describe DVH data from patients treated with multiple radiation techniques and demonstrated associations between PRO late toxicity and dosimetric and clinical data. The prospective study interim analysis found resolution of many treatment-related symptoms by six-months and provided encouraging findings for the use of longitudinal PRO collection in routine practice.
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Razvi, Salman Syed. "L-thyroxine therapy in subclinical hypothyroidism : effect on cardiovascular risk factors, endothelial function and patient-reported outcomes." Thesis, University of Newcastle Upon Tyne, 2007. http://hdl.handle.net/10443/701.
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Context: It is controversial whether the treatment of subclinical hypothyroidism (SCH) with L-thyroxine improves cardiovascular (CV) risk factors and quality of life (QoL). Objective: To determine whether CV risk factors, endothelial function and patient-reported outcomes improve in people with SCH with L-thyroxine treatment. Design: Randomised double blind, cross-over study. Setting: Patients from primary care practices identified from laboratory database. Patients: One hundred patients (81 females) with mild SCH, and no existing thyroid or vascular disease, mean (SD) age 53.8 (12) years, thyrotropin (TSH) of 6.6 (1.3) mIU/L. One patient withdrew due to perceived side-effects. Intervention: Oral 100 meg of L-thyroxine or matching placebo daily for twelve weeks each. Main outcome measures: Powered to detect significant improvements in two primary parameters: total cholesterol (TQ levels and endothelial function (brachial artery flow mediated dilatation-FMD), the earliest marker of atherosclerosis. Results: L-thyroxine treatment reduced (mean difference, 95% Q TSH (5.64 mIU/L, 4.11 to 7.17), increased FT4 and FT3 levels (6.98 pmol/L, 5.97 to 7.98 and 0.6 pmol/L, 0.37 to 0.82, respectively), FMD improved (1.65%, 1.2 to 2.1) and TC levels reduced (435 mmol/L, -0.52 to -0.16). Increase in FT4 levels was the only significant determinant of the improvement in TC and FMD. Sexlife and overall QoL were less negatively impacted by SCH during L-thyroxine treatment. Symptom bother scores did not benefit by L-thyroxine but there was a significant improvement in the frequency of tiredness - from 89% to 78%, p<0.05. Health status and treatment satisfaction did not show any significant change. Conclusion: SCH treated by L-thyroxine leads to a significant improvement in CV risk factors and some patient-reported outcomes. The benefit of CV risk reduction is related to the increased level of achieved FT-4 concentration.
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Archer, Stephanie. "Treatment beyond treatment : exploring the effects of two complementary interventions on patient reported outcomes of gynaecological cancer." Thesis, University of Derby, 2013. http://hdl.handle.net/10545/305905.
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Gynaecological cancers (which include cancers of the ovary, cervix, uterus, vagina, endometrium, vulva and fallopian tube) account for 19% of all female cancers, and there are approximately 942,000 new cases diagnosed per year worldwide. Treatment for gynaecological cancer is often multi modal and consists of surgery, radiotherapy and chemotherapy. Current government policy has highlighted the need to focus on improving patient reported outcomes, including the patient experience of all aspects of cancer (including treatment), and the quality of life (QoL) of patients living with and beyond a cancer diagnosis. This thesis focuses on the effects of two different complementary interventions available to patients who were undergoing active treatment for gynaecological cancer at the Royal Derby Hospital between 2010 and 2012. Patient reported outcomes were explored in terms of the patients’ experience of the interventions and their reported levels of quality of life. The first study in this thesis explores the patient experience of an enhanced recovery programme (ERP) which was implemented for gynaecological cancer patients undergoing surgery at the Royal Derby Hospital in 2010. Previous research has found that ERPs (which complement traditional surgery) can decrease length of hospital stay, and they are now being implemented nationwide. However, there is a paucity of research into the patient experience of ERPs, especially in the field of gynaecological cancer. This study utilised a qualitative methodology to explore the experiences of 14 gynaecological cancer patients who took part in the ERP at Derby. Each patient was interviewed using a semi-structured format and the transcripts were analysed using Interpretative Phenomenological Analysis. The analysis highlighted that patients highly value the programme, and four main themes, fundamental to their experience, emerged from the data: taking part in the programme, the role of home, managing expectations and individual experiences outside of the programme. The second part of this thesis explores whether yoga can improve the quality of life (QoL) of patients undergoing treatment for gynaecological cancer when used as a complementary therapy. Previous research has found that participation in yoga can improve QoL in the breast cancer population, although there have been no similar studies conducted with UK gynaecological cancer patients to date. The study presented here utilised a randomised controlled design; 44 patients receiving treatment for gynaecological cancer were randomly allocated into a control group or a 10 week yoga intervention group. Outcomes were measured using the EORTC QLQ C30 questionnaire pre and post trial alongside visual analogue scales that were incorporated into a weekly diary. The results suggest that there was no significant effect of yoga on QoL, although there was encouraging data from one set of tests within the analysis, which suggested that patients on the yoga arm were seeing more improvement in QoL over time compared to the controls. Methodological improvements to clinical trials investigating complementary interventions are discussed in light of the results of this study. The overall findings of these two studies highlight that the utilisation of mixed methods is efficacious when exploring the effects of complementary interventions on the patient reported outcomes of those with gynaecological cancer. The use of qualitative methods to explore the patient experience of the ERP allowed for an in-depth, unique analysis to take place which was specific to the service delivered at The Royal Derby Hospital. The findings and recommendations from this part of the research have been incorporated into the on-going development of the pathway; it has indicated that more use of qualitative methods is needed in health services research to ensure that the patient experience is being fully explored, in line with the current government policy. Similarly, the second part of the research reported here indicates that further research in the area of yoga and gynaecological cancer is warranted. This requires a narrower focus with regards to both cancer type and point of treatment, to ensure that the number of variables is controlled. In addition, appropriate measurement and analysis techniques need to be considered (such as the generalised additive model used in this research) to preserve the richness of the data as this has not been considered (or utilised) in the many previous pieces of research in the area.
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Kaur, Harsimran. "Digitally Enabled, Wearable Remote Patient Monitoring of Clinical Trials to Assess Patient Reported Outcomes-A Systematic Review : Shifting Paradigm from Site-Centric to Patient Centric Health Care." Thesis, Högskolan i Halmstad, Akademin för hälsa och välfärd, 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:hh:diva-45283.
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Summary: Although the digital revolution has transformed many niches of human activity, healthcare sector and pharmaceutical drug development has been relatively slow in embracing emerging technologies to optimize health efficacy, especially in Nordic Countries. The topic is of more importance now owing to the present scenario of the corona virus (COVID-19)outbreak, which has caused unparalleled disruption in the conduct of clinical trials and presented challenges as well as opportunities for clinical trialists and data analysts. In this master thesis, the potential opportunity with virtual or digital clinical trials as viable options to enhance drug development efficiency is highlighted that offers diverse patients easier and attractive ways to participate in clinical trials. Special reference is made to wearable devices in clinical trial execution and generating real world data; its acquisition and processing in a virtual trial setting. Issues of patient safety, measurement reliability and validity, and data privacy & integrity are reviewed, and considerations are put forward for mitigation of underlying regulatory andoperational barriers. The aim of this thesis is to assess the recent wearable technologies that generate Real World Data and to understand the potential of this data to transform Nordic healthcare industry. A systematic review of clinical trials involving wearable patient monitoring technique in North America, Nordic Countries and other European countries was conducted. Out of various innovative wearable technologies, Smartwatches are found to be the most common and it is also observed that these wearable technologies have been able to help in early detection and diagnosis of diseases and modify disease progression by real time monitoring of data and develop precision medicine. thus, it is concluded that Wearable Remote Patient Monitoring is a novel technique that has few barriers;but promises a big transformation in Nordic Countries as well as in entire healthcare industry.
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HIGHFILL, TINA C. "PATIENT OUTCOMES AND MANAGED CARE: WHAT WAS THE IMPACT OF THE STATE REGULATORY BACKLASH?" VCU Scholars Compass, 2017. https://scholarscompass.vcu.edu/etd/4854.
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Hundreds of state regulations were passed during the “managed care backlash” of the late 1990s and early 2000s. Many of these anti-managed care regulations eased or eliminated constraints on patient utilization of health care services imposed by managed care organizations. Other regulations gave managed care providers more flexibility in the way they practiced care or helped patients appeal denials of claims. Despite the effort undertaken to pass these regulations, limited research exists on whether the regulations achieved their goal. To fill this gap, this study takes advantage of the variety of regulations enacted during the managed care backlash of the late 1990s and early 2000s to investigate their impact on patient-reported quality of care and mortality for managed care enrollees.
The results indicate the regulations did improve patient-reported outcomes, but to varying degrees and only in the latter period of the backlash. Specifically, managed care enrollees who lived in states that adopted moderate-intensity regulations between 2000 and 2004 reported relatively better improvements in access to care and confidence in their provider than did managed care enrollees in states with low-intensity backlash regulations. The positive effect on access to care was similar in states that adopted high-intensity regulations. However, no positive effect was found for any outcome in the first period (1996-2000). These results show that states with the most intense regulatory backlash did not realize better patient-reported outcomes. Instead, states that pursued moderate-intensity backlash regulations experienced relatively better outcomes for their managed care enrollees.
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Oladimeji, Olayinka Omobolanle. "Concern beliefs in medicines: description, changes over time and impact on patient outcomes." Diss., University of Iowa, 2009. https://ir.uiowa.edu/etd/314.
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Concern beliefs in medicines are patients' anxieties about the harmful effects of a specific prescribed medication. Three papers examined the importance of concern beliefs in medicine, specifically its relationship to patient outcomes such as self-reported adverse drug events (ADEs) and symptom attribution, and the factors that might drive a change in concern beliefs over time. For the first and second paper, a cross-sectional internet survey of Medicare enrollees who were English speakers, 65 years and older and enrolled in the Medicare Part D program was done. In the third paper, a longitudinal internet survey of the same sample was done before Medicare Part D in 2005 and after Medicare Part D in 2007, and adults 40 years and older with physical limitations were interviewed using telephone. Multiple logistic regressions showed that having stronger concern beliefs in medicine and more symptoms was related to self-reported ADE, rather than using an inappropriate medicine or the number of inappropriate medicines used. Using independent sample t-tests, concern beliefs in medicine were found to be unrelated to symptom attribution for any causal reason, irrespective of whether there was patient-clinician agreement on attribution. Multiple linear regressions showed that concern beliefs changed over time for some older adults and having an ADE in the past year was related to this change. Among adults with physical limitations, though concern beliefs changed for some individuals; only one factor included in this study, changes in number of medicines, was related to this change. Establishing the importance of concern beliefs in medicines as a socio-psychological variable to consider in medication use outcomes will enhance the understanding of clinical researchers and practitioners concerning the mechanism of ADEs and symptom reporting.
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Hermansen, Anna. "Clinical and patient-reported outcomes after anterior cervical decompression and fusion surgery : A focus on functioning and daily life." Doctoral thesis, Linköpings universitet, Avdelningen för fysioterapi, 2015. http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-117347.
Full textAbstract:
Anterior cervical decompression and fusion (ACDF), with or without an intervertebral cage to add support to the fused segment, is an established surgical treatment of cervical radiculopathy due to cervical disc disease. High recovery rates and pain reductions after surgery have been reported, with similar results with or without a cage. A few small studies have evaluated neck-related physical function and patient-reported disability with less promising results. No previous studies have evaluated clinical and patientreported measures of functioning or compared the Cloward Procedure with the Cervical Intervertebral Fusion Cage (CIFC) more than 10 year after surgery. No studies have explored the patients’ perspective on surgical outcome Knowledge on long-term functioning may provide a base for improved postoperative care and rehabilitation. Combining the perspectives of clinicians and patients may provide a better understanding of outcome after ACDF surgery than has previously been reported. The overall aim of the thesis was to evaluate long-term functioning after anterior cervical decompression and fusion surgery due to cervical disc disease, and to provide new insights into patients’ experiences of daily life after surgery. The more than 10-year patient-reported outcomes of pain, disability and psychosocial factors (n=77), as well as clinical outcomes of neck-related physical function (n=51) were evaluated and compared between the Cloward Procedure and the CIFC. Preoperative and surgery-related factors of importance for a good outcome in neck-related pain and disability at 10-year follow-up were also identified. Fourteen women were interviewed at 1.5 to 3 years after ACDF to explore their experiences of daily life. There were no differences between the surgical techniques in long-term neck-related pain or patient-reported disability. Secondary outcomes were, with a few exceptions, similar between groups. Neck-related pain decreased after surgery and remained improved from the 2-year to the 10-year follow-up. However, disability ratings remained improved only in the CIFC group. Predictors of a successful outcome in neck-related pain intensity were high preoperative neck-related pain intensity (Odds Ratio 1.06) and nonsmoking (Odds Ratio 3.03). Male gender was the only predictive factor of a successful outcome in neck-related disability (Odds Ratio 4.33). Moderate to severe pain and patient-reported disability were seen in half of the participants at the 10-year follow-up, and neck-related physical impairments were seen in between 18% (cervical flexion) and 82% (neck-muscle endurance) of participants. Daily life was experienced as recovered or improved by women after ACDF surgery. However they were at the same time affected and limited by remaining symptoms. Behaviors and activities were altered to adjust to the symptoms. Social support provided by family, social and occupational networks, and by healthcare professionals were experienced as important in a good daily life. In conclusion: long-term pain, physical function and patient-reported disability were similar between the two ACDF techniques. High preoperative pain intensity, non-smoking and male gender predicted a good long-term outcome. Individuals after ACDF surgery experienced improvements in pain intensity and a good effect of surgery although they simultaneously reported residual or recurrent disability.
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Halls, S. "Understanding the patient experience of stiffness, and developing a stiffness patient-recorded outcome measure, in rheumatoid arthritis." Thesis, University of the West of England, Bristol, 2016. http://eprints.uwe.ac.uk/29181/.
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Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory disease. Stiffness is a major symptom of RA which is commonly reported by patients, affects patients’ daily life, and is relevant to patients in relation to fluctuating aspects of RA such as flare and low disease activity. Morning stiffness is also frequently used as an outcome measure both clinically and in research. Despite the relevance and uses of stiffness, it remains poorly understood and was omitted from the RA core set because of poor measurement properties. A pragmatic, mixed methods approach was used to better understand the patient experience of stiffness in people with RA and to develop and test a new RA stiffness patient reported outcome measure (PROM). It involved a systematic literature review, semi-structured interviews, focus groups, cognitive interviews, the development of appropriate candidate items to characterise stiffness and multivariate analysis of a survey using these items. The systematic literature review found that current stiffness assessment is based on items that capture the duration or severity of morning stiffness. However, items were often poorly defined, highly variable in wording and format, had limited measurement property evidence and had not been developed according to current standards including collaboration with patients. Overall, there was no evidence regarding the most appropriate way to assess stiffness in RA, indicating the need for a new measure developed according to best practice PROM guidelines. Semi-structured interviews with RA patients provided an improved understanding of their experience of stiffness, demonstrated its relevance to patients and enabled the development of a conceptual model. These data also highlighted inconsistencies between current stiffness assessment and the patient perspective of this symptom. Focus groups with RA patients reinforced the stiffness conceptual model in a new sample, using a different method of data collection. They also provided information specifically addressing stiffness assessment from the patient perspective, including a number of concepts for measurement instrument development. These patient-driven concepts and qualitative data were tempered with measurement theory to develop a conceptually sound yet practically appropriate preliminary set of items for a new RA stiffness PROM. Preliminary items were reviewed and modified by RA patients in cognitive interviews. Following refinement, 45 candidate items (39 new items and 6 traditional stiffness items) were taken forward to a postal survey to develop and test the structure of a new RA stiffness PROM. Analysis of the survey responses involved rigorous statistical testing including a series of iterative principal component analyses (undertaken initially with two different approaches), balancing Cronbach’s alpha for internal consistency, bootstrapping for stability, and expert judgement for clinical appropriateness. The emergent structure was the Rheumatoid Arthritis Stiffness (RAST) questionnaire with 21 items in 3-components capturing ‘stiffness severity’, ‘physical impact’ and ‘psychosocial impact’. The initial qualitative work enhanced its content validity and statistical testing for appropriate relationships with other measures of disease demonstrated good construct validity. These results provide support for RAST as an appropriate tool for use in future stiffness assessment. The development of the RAST is important in recognising stiffness as a relevant patient symptom and is a significant step towards standardised stiffness assessment. Further testing in a fresh population will generate additional evidence of reliability and sensitivity to change to support its use. The RAST provides a measure for use in new investigations of disease mechanisms and response to therapy.
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Ali, Tauhid. "Validation of patient-reported outcomes in Parkinson's disease : comparisons of generic and disease-specific health-related quality of life instruments." Thesis, Cardiff University, 2005. http://orca.cf.ac.uk/55633/.
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Health-related quality of life HRQOL is central to the management of chronic diseases such as Parkinson's disease PD. Several disease specific and generic instruments have been used to measure quality of life in PD, but nobody has to date identified which disease-specific or generic measure has the most relevant domains and optimal psychometric properties reliability, validity and sensitivity for use in the PD population. The aims of the study were therefore to compare the measurement properties of available instruments in PD population and recommend the most appropriate ones for use in future clinical research and routine practice. The UKSIP a generic HRQoL instrument which had not been previously assessed in the PD population or compared against the PDQ-39 demonstrated good test-retest reliability Spearman's r 0.70 and convergent validity p 0.001 of the UKSIP overall score with all domains of the PDQ-39 in a postal survey of PD patients n 91 mean age 70 64male. The UKSIP overall score correlated most strongly with the PDQ-39 mobility and activities of daily living scales. The strong Cronbach's a values 0.70 for the UKSIP physical and psychosocial summary scores gave an indication that their items were internally consistent. Interestingly, much of the dysfunction reported by PD patients was related to non-physical difficulties according to the UKSIP and vice versa for the PDQ-39. This study highlighted the robustness and reliability of the UKSIP in this PD population. When comparing the UKSIP against a benchmark generic instrument, the SF-36, in a sample of patients n 36 mean age 69 24male from a neurology out-patients clinic, it had comparable psychometric properties with a PD clinical measure of disease severity, the Hoehn and Yahr H Y scale. The two questionnaires were also able to discriminate between stage I, II and III/IV of PD as measured by the H Y scale p 0.05 for most domains. However, the UKSIP exhibited evidence of responsiveness to change over time in some domains of interest p 0.05 amongst patients reporting deterioration as assessed by the H Y scale, a pattern that was not repeated by the SF-36. Furthermore, items in the SF-36 were identified as redundant as they had little bearing in the elderly population whereas the UKSIP detected impairment in areas of interest to PD patients such as sexual activity, impairment in cognition, and sleep disturbance which are not addressed in the SF-36. Having established that the UKSIP was the more suitable generic instrument to use in PD the established disease-specific instrument, the PDQ-39 was assessed against the relatively new disease-specific Parkinson's Impact Scale PIMS. The PIMS exhibited varying levels of internal consistency reliability which were found to be erratic between baseline and follow-up visits n 47 mean age 65 25male. Also, the internal consistency of the PIMS column which was completed by fluctuating patients were wide-ranging a 0.284 - 0.731 for each of the PIMS dimensions at baseline. On the other hand, all PDQ-39 domains exhibited good internal consistency reliability Cronbach's a 0.70 which was stable across the baseline and follow-up visits. Though there was evidence of convergent validity for the PIMS with strong correlations with the PDQ-39 domain scores this was only for the non-fluctuating patients. Also, none of the correlation coefficients were found to be statistically significant at p 0.05 between PIMS domains and the clinical measure, the H Y, indicating a lack of association between this clinical outcome measure and the domains of HRQoL measured by the PIMS. The PDQ-39 exhibited strong correlation p 0.005 against the UPDRS score and against the H Y. The PIMS did highlight that there was a difference in dimension scores between stable and fluctuating patients. An important observation from this study was that the PIMS was not well comprehended by the PD patients as was reflected by the high rate of missing data in what is a relatively short instrument. The study which was conducted across four neurology out-patient centres n 145 mean age 65 80male revealed that the PDQ-39 was able to identify that patients with fluctuating disease and dyskinesia experience greater impairment in the relevant domains of HRQoL compared to stable patients, and in particular for the domain of emotional well-being. The responsiveness of the PDQ-39 was partially confirmed as levels of significance p 0.05 were reached for the domains of mobility in the motor fluctuation group with no dyskinesia and communication for the stable group, who were deemed to have deteriorated at the follow-up visit as indicated by an increase in the total UPDRS score. Finally, the study observed that greater caregiver distress was evident for the motor fluctuating and dyskinetic groups compared to the carers of the stable patients.
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Almotiri, Badreea. "Evaluation of healthcare professionals' attitudes towards non-compliance with drug treatments and impact of their behaviour on patient-reported outcomes." Thesis, Cardiff University, 2010. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.585053.
Full textAbstract:
The results showed that poor communication with patients as a healthcare professional behaviour was reported as one of the most important reasons for patients non-compliance with medications and healthcare professionals' poor communication skills was one of the main constraints that hindered communication with patients. In addition the findings of this study revealed that there was some weakness in communication between healthcare professionals' and patients in two dimensions of concordance model negotiating with patients and supporting them in medicine taking. A communication skills training programme for healthcare professionals aimed to improve healthcare professionals communication skills in general and in concordance approach in particular; and evaluate its impact on patients' reported outcomes such as patients' compliance with medications, blood pressure level, and patients' health-related quality of life (HRQoL). The communication skills training programme for healthcare professionals resulted in significant improvements in both hypertensive patients' compliance with medications and their blood pressure level. This study proved that good communication with patients had positively influenced patients' reported HRQoL.
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Bell, M. L., M. H. Fiero, H. M. Dhillon, V. J. Bray, and J. L. Vardy. "Statistical controversies in cancer research: using standardized effect size graphs to enhance interpretability of cancer-related clinical trials with patient-reported outcomes." Oxford University Press, 2017. http://hdl.handle.net/10150/626025.
Full textAbstract:
Patient reported outcomes (PROs) are becoming increasingly important in cancer studies, particularly with the emphasis on patient centered outcome research. However, multiple PROs, using different scales, with different directions of favorability are often used within a trial, making interpretation difficult. To enhance interpretability, we propose the use of a standardized effect size graph, which shows all PROs from a study on the same figure, on the same scale. Plotting standardized effects with their 95% confidence intervals (CIs) on a single graph clearly showing the null value conveys a comprehensive picture of trial results. We demonstrate how to create such a graph using data from a randomized controlled trial that measured 12 PROs at two time points. The 24 effect sizes and CIs are shown on one graph and clearly indicate that the intervention is effective and sustained.
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Waterson, Hugh Benedict. "Kinematic alignment and total knee arthroplasty." Thesis, University of Edinburgh, 2018. http://hdl.handle.net/1842/31190.
Full textAbstract:
Osteoarthritis (OA) is one of the leading causes of global disability. Surgical intervention in the form of Total Knee Arthroplasty (TKA) has been established as an excellent treatment modality for people with OA who experience joint symptoms that have a substantial impact on their quality of life and are refractory to non-surgical treatment. In the 1970s the concept of implanting TKAs in mechanical alignment (MA) was developed as a compromise to confer mechanical advantage to the prosthesis, ignoring the patient's natural anatomy, to prevent early failure of the implant. Until now, this compromise has not been revisited. Satisfaction following TKA remains inferior to total hip arthroplasty. The cause of this dissatisfaction is not clear. Implant survival is no longer comparable to that of the early designs of TKA, and recent studies have suggested that deviation from neutral alignment does not have the detrimental effect on survivorship as previously thought. In an attempt to improve patient satisfaction following TKA a new technique has been developed whereby the prostheses are implanted in such a way as to recreate the alignment of the knee in the patient's pre-arthritic state. This has been termed natural or kinematic alignment (KA). This thesis examines the impact of KA in TKA with the primary hypothesis that TKA performed utilising KA would lead to improved functional outcome following surgery compared to that of MA. An initial single surgeon proof of concept case series of 25 patients was performed to look at the precision of new patient specific cutting blocks. The results suggested that the cutting blocks were accurate in producing the desired cuts. Following the proof of concept case series, a feasibility study was then performed comparing the new KA technique with the standard MA technique. The feasibility study familiarised the operating surgeons with the new technology in preparation for a Randomised Control Trial (RCT). A prospective blinded RCT was performed to compare the functional outcome of patients implanted with TKA in MA with that of KA. A total of 71 patients undergoing TKA were randomised to either MA (n=35) or KA (n=36). Preand post-operative hip knee ankle (HKA) radiographs were analysed. A number of patient reported outcome measures and functional tests were assessed pre-operatively, 6 weeks, 3 months, 6 months, and at 1 year post-operation. The cutting guides were accurate. There were no statistically significant differences between the MA and KA groups at 1 year. A cohort of post-menopausal women with unilateral osteoarthritis treated with TKA utilising the KA philosophy had dual energy x-ray absorptiometry scans 1.5 years post-operatively using a modified validated densitometric analysis protocol, to assess peri-prosthetic Bone Mineral Density (BMD). The contralateral knee was scanned so that relative bone mineral density could be calculated. Statistical analysis revealed no significant difference in relative peri-prosthetic bone mineral density due to variation in implant position with respect to the Lateral Distal Femoral Angle (LDFA) and the Medial Proximal Tibial Angle (MPTA). There was a significant correlation with overall HKA angle and the relative BMD under the medial side of the tibial tray. KA TKAs appear to have comparable short-term results to MA TKAs with no significant differences in function 1 year post-operatively. Overall HKA angle rather than the individual component position caused change in relative BMD under the tibial tray, therefore aiming for an anatomical joint line may improve kinematics without a detrimental effect on the implant. Further research is required to see if any theoretical long-term functional benefits of KA are realised or if there are any potential effects on implant survival.