Thesis advisor: Judith A. Vessey / Purpose: The purpose of this study was to elucidate changes in parents' perceptions of health related quality of life (HRQOL), functional status, and caregiver burden in children with severe cerebral palsy (CP) following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization. Background: CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems and frequently develop hip dislocations and neuromuscular scoliosis; these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making needs to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, functional status, caregiver impact, and financial burden. Currently, research on this second group of outcomes does not exist. Methods: A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child's hospitalization. A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL, functional status, and caregiver impact using measures normed for this population (i.e., CPCHILD, ACEND). NOOPEs were calculated using descriptive statistics. Results: Significant declines in HRQOL and functional status were noted at six weeks post-operative with return to baseline at three months. Long-term significant (p = .005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time. The total NOOPEs for the inpatient ranged from $59.00-$6977.50 (Median = $479.30) with 1971.5 missed hours from work. Conclusion: Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the long-term following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Although in the past 50 years significant advances based on research of brain-computer interface (BCI) technology have occurred, there is a scarcity of BCI assistive technology devices at the consumer level. This multiple case study explored user-centered clinical BCI device design strategies used by computer scientists designing BCI assistive technologies to meet patient-centered outcomes. The population for the study encompassed computer scientists experienced with clinical BCI assistive technology design located in the midwestern, northeastern, and southern regions of the United States, as well as western Europe. The multi-motive information systems continuance model was the conceptual framework for the study. Interview data were collected from 7 computer scientists and 28 archival documents. Guided by the concepts of user-centered design and patient-centered outcomes, thematic analysis was used to identify codes and themes related to computer science and the design of BCI assistive technology devices. Notable themes included customization of clinical BCI devices, consideration of patient/caregiver interaction, collective data management, and evolving technology. Implications for social change based on the findings from this research include focus on meeting individualized patient-centered outcomes; enhancing collaboration between researchers, caregivers, and patients in BCI device development; and reducing the possibility of abandonment or disuse of clinical BCI assistive technology devices.

Indiana University-Purdue University Indianapolis (IUPUI) / Symptom research with advanced lung cancer patients has primarily focused on symptom severity, frequency, and distress; yet, little is known about advanced lung cancer patients’ priorities and success criteria for symptom improvement. To address these gaps in the literature, this study examined these outcomes using a modified Patient Centered Outcomes Questionnaire (PCOQ), which has largely been used with adults with chronic pain. Advanced lung cancer patients (N = 102) were recruited from the Indiana University Simon Cancer Center to participate in a one-time self-report survey, including demographic and medical questionnaires, symptom treatment history, standardized measures of symptom severity and quality of life, and the modified PCOQ focused on eight common symptoms in advanced lung cancer. Cancer information was collected from medical records. My primary aim was to evaluate the construct validity of the PCOQ. As hypothesized, symptom severity ratings on the PCOQ were positively correlated with standardized assessments of the same symptoms as well as functional status. Greater severity of most symptoms on the PCOQ was also correlated with worse quality of life, and greater severity of four symptoms was correlated with having more medical comorbidities. Positive, moderate correlations were found between the severity and importance of seeing improvement in cough, fatigue, sleep problems, and pain on the PCOQ. Patients considered low levels of symptom severity to be acceptable following symptom treatment; no differences were found across the eight symptoms. Latent profile analysis identified four patient subgroups based on the importance of seeing improvement in each of the symptoms: (1) those who rated all symptoms as low in importance (n = 12); (2) those who rated bronchial symptoms and sleep problems as low in importance and all other symptoms as moderately important (n = 29); (3) those who rated nausea and emotional distress as low in importance and all other symptoms as moderately important (n = 23); and (4) those who rated all symptoms as highly important (n = 33). These subgroups were unrelated to demographic and clinical factors, except for functional status. Findings suggest that symptom severity and importance are related yet distinct aspects of the advanced lung cancer symptom experience. Furthermore, patients have heterogeneous priorities for symptom management, which has implications for tailoring treatment.

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MSc Health Research Methodology - Health Technology Assessment specialization / Immune thrombocytopenia (ITP) is an autoimmune disease characterized by reduced production and augmented destruction of platelets. Adults with ITP have platelet blood counts less than 100x109/L. Ranging from mild to severe, bleeding symptoms may include epistaxis, gingival, petechiae, mucosal, gastrointestinal, vaginal, or intracranial bleeding. ITP can be primary or secondary to other medical conditions. Three phases categorize primary ITP based on the onset and persistence of symptoms: newly diagnosed, persistent, or chronic (1-4). An ITP diagnosis includes a complete blood count, blood film, and viral and autoimmune testing. Depending on patients' comorbidities, the type and number of examinations may vary (3). Diagnosis may also depend on the platelet count response to medications or treatment of secondary causes. There is the need to streamline ITP diagnosis. The time-consuming and high-cost approaches to ruling out other thrombocytopenic conditions, have led Michael G. DeGroote Centre for Transfusion Research (MCTR) researchers to optimize ITP care by developing the Predict-ITP Tool to identify patients with ITP during the initial hematology consultation. The clinical prediction model incorporates data such as platelet count variability, maximum mean platelet volume (MPV), lowest platelet count value, and a history of severe bleeding at any time (5). Improving diagnostic accuracy may improve the quality of life and help reduce expensive, unnecessary, and potentially harmful treatments. Overall, this project vi aims to determine the cost savings of the Predict-ITP tool when implemented in practice, compared to current ITP diagnostic practices. To achieve this goal, in this thesis, we will first estimate the current cost of ITP care and design a health economic evaluation to accompany a randomized controlled trial (RCT) comparing the quality of life and economic impact of the Predict-ITP tool versus current ITP care / Thesis / Master of Health Sciences (MSc) / Platelets help to stop bleeding. Immune thrombocytopenia (ITP) is a disease characterized by decreased platelet counts in the blood. This condition may cause symptoms such as recurring gums and nosebleeds, effortless bruising, and potential life-threatening bleeding. There is no specific test to identify ITP, and its diagnosis is based on excluding other causes of low platelet counts. As a result, an incorrect diagnosis is common in the clinic, resulting in unnecessary testing, wrong treatment, decreased quality of life, and increased costs. To identify the probability of a patient having ITP at the initial hematology consultation, McMaster researchers developed a clinical prediction model. The objectives of this study protocol were to determine the cost savings of the prediction model compared to the standard of care. I have designed an economic analysis that will accompany a randomized trial, comparing the use of the prediction model vs. no model (the current standard of care). The primary outcome of the economic analysis will be to demonstrate the clinical prediction model's cost-effectiveness. Secondary outcomes are the difference in costs between the prediction model and current ITP care, resource utilization, and life quality.