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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