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Publication The motivational factors and adverse events experienced by healthy volunteers donating bone marrow for research(Heighten Science Publications Corporation (HSPC), 2019-12-05) Ejiugwo, Mirella; Shaw, Georgina; Barry, Frank; Krawczyk, Janusz; McInerney, VeronicaBackground: With the advancement of cell therapy research, there is an increasing need for healthy volunteers (HV) to donate small volumes (30 ml) of human bone marrow (BM). The BM procedure required to procure small volumes is invasive, although short-lived (25 seconds), is not without risk. To ensure a sustainable supply of BM for research and cell therapy, greater information of the risks and factors that motivate HV to donate small volumes of BM will help optimize the procedure and HV enrolment, ensuring donors are fully informed of the potential risks. Objective: To identify the adverse events (AE) experienced by HV during and after small volume BM procedure and understand the motivating factors that infl uence HV to donate BM for research. Method: HV (n = 55) who donated BM (30 ml) for scientifi c research and provided informed consent were administered a questionnaire to identify the type, duration and severity of AE experienced during and post-BM aspiration; and to determine the motivating factors that influenced their willingness to donate BM. Results: Pain was experienced by 89% of participants during the BM procedure with moderate grade reported by 40%. One/more of the following AE were experienced by 73% of the volunteers post-BM procedure: pain, fatigue, site reaction, nausea and transient hypotension. AE resolved within an average of three days. The reported motivational factors ranked in the following order:first, to advance research for the benefit of future patients; compensation for participation; free medical check-up; lastly, the research question was interesting. Conclusion: Young HV, motivated primarily by altruism and financial compensation, risk the occurrence of transient AE following donation of small-volume BM for research.Publication Exploring the innate human potential for positive adaptation in the ace of impending mortality: Is there a response shift in subjective quality of life over time in a group of patients with lung cancer receiving palliative treatment?(International Journal of Innovative Research in Medical Science, 2020-05-06) Mannion, Eileen; Gilmartin, J. J.; McInerney, Veronica; Molony, Kate; Basquille, Emily; Waldron, DympnaTraditionally changes in quality of life (QoL) are assessed using self report questionnaires. They rely on the assumption that the patient’s point of reference does not change over time. However in reality patients with chronic and life threatening illness appear to undergo an adaptation to their disease or “Response Shift” (RS). In this study of a population of patients with advanced lung cancer receiving palliative chemotherapy we examine for a RS in subjective QoL. Methods: 33 patients completed the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), SEIQOL–DW and the EORTC-QLQ C-30 at diagnosis. At 1, 3 and 6 months patients completed SEIQoL/ SEIQOL–DW and retrospectively re-assessed their baseline QoL (the “then” test) using SEIQoL-DW. Results: The initial mean SEIQoL-DW score was 67.48 changing to 66.71 at one month. Retrospectively, patients reassessed their initial mean SEIQoL-DW score as 59.61, suggesting a RS of 7.87 (p ≤0.0001) and an actual improvement in QoL of 7.1 points. At three months the mean SEIQoL-DW score was 65.13; retrospectively patients rated their QoL at one month much lower, mean SEIQoL-DW then – test’ score was 59.92, suggesting a RS of 6.79 (p = 0.0013). At six months patients’ mean SEIQoL-DW score was 61.86. Again, when retrospectively rating their QoL at three months they rated it lower, mean SEIQoL-DW score of 58.84, indicating a ‘positive’ RS of 6.28 (p = 0.0007). Conclusion: Traditional pre/post SEIQOL–DW scores show little change in subjective QOL however by incorporating the ‘then-test’ we can see that patients have undergone a RS and a significant positive change in subjective QOL. By explicitly measuring RS it may be possible to assess changes in QoL with greater validity and sensitivity.Publication A guide to selecting a measurement tool for quality of life assessment(Medical and Clinical Research, 2019-05-07) McInerney, Veronica; Mannion, Eileen; Moses, Anusha; Molony, Kate; Waldron, Dympna; Irish Hospice FoundationModern approaches to patient treatment and personalized medicine increasingly recognize the importance of the patient’s quality of life outcome. The art of assessing and using quality of life information in routine practice remains a challenge and poses a stumbling block for clinicians. This critical review of the literature identifies useful measures to minimize those challenges and guide nurses and researchers in selecting the correct tool for measuring quality of life in their clinical settingPublication An intervention using quality of life and symptom information as a clinical tool in patients with advanced cancer(International Journal of Innovative Research in Medical Science (IJIRMS), 2019-09-07) McInerney, Veronica; Mannion, Eileen; Molony, Kate; Reilly, Leona; Waldron, DympnaThe Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) recognizes the individuals’ values with no pre-judgement. The objective of this study was to determine if clinician awareness and understanding of individual patients’ subjective quality of life (SQoL), bothersome symptoms and symptom interference on SQoL, would lead to improvement over time in the SQoL of patients with advanced cancer. Methods: SEIQoL-DW and symptom bother/interference with SQoL was measured up to 4 time points on Sixty-five (n=65) patients receiving chemotherapy for advanced cancer. Measurements from the intervention group (n=33) was reported to the clinical team at each time point via an info-graph placed in the clinical notes. Measurements from the control group (n=32) was not reported to the clinical team. Results: SEIQoL-DW of all patients improved from baseline to time point 4 (p >0.05).A significant improvement in patient’s perception of health functioning was seen in the intervention group compared to the control group (51% v 19%, p=0.014). Symptom interference in SQoL reduced by 9% in the intervention group versus 37% increase in the control group. In totality, a 46% difference was observed between groups (p < 0.05). Interpretation: Translating SEIQoL-DW and symptom bother/interference into a format for use as a ‘Clinical Tool’ in routine practice improves patient reported health functioning and symptom interference on their SQoL. This patient centered approach could lead to a paradigm shift in our understanding of patient’s needs and in harmony with other clinical interventions, should be considered a valuable step towards personalized medicine.