Search results for: health outcome
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 10134

Search results for: health outcome

10044 Antmicrobial Packaging, a Step Towards Safe Food: A Review

Authors: Hafiz A. Sakandar, M. Afzaal, U. Khan, M. N. Akhtar

Abstract:

Food is the primary concern of living organisms, provision of diet for maintenance of good physical and mental health is a basic right of an individual and the outcome of factors related to diet on health has been matter of apprehension since ancient times. Healthy and fresh food always demanded by the consumers. Modern research has find out many alternatives of traditional packaging. Now the consumer knows that good packaging system is that which protects the food from the contaminants and increases shelf life of food product. While in Pakistan about 40% of fruits and vegetables lost due to spoilage caused by poor handling, transportation, and poor packaging interaction with other environmental conditions. So it is crucial for developing countries like Pakistan to pay attention to these exacerbating situations for economy losses by considering food packaging an ultimate solution to the problem.

Keywords: packaging, food safety, antimicrobial, food losses

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10043 Data and Biological Sharing Platforms in Community Health Programs: Partnership with Rural Clinical School, University of New South Wales and Public Health Foundation of India

Authors: Vivian Isaac, A. T. Joteeshwaran, Craig McLachlan

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The University of New South Wales (UNSW) Rural Clinical School has a strategic collaborative focus on chronic disease and public health. Our objectives are to understand rural environmental and biological interactions in vulnerable community populations. The UNSW Rural Clinical School translational model is a spoke and hub network. This spoke and hub model connects rural data and biological specimens with city based collaborative public health research networks. Similar spoke and hub models are prevalent across research centers in India. The Australia-India Council grant was awarded so we could establish sustainable public health and community research collaborations. As part of the collaborative network we are developing strategies around data and biological sharing platforms between Indian Institute of Public Health, Public Health Foundation of India (PHFI), Hyderabad and Rural Clinical School UNSW. The key objective is to understand how research collaborations are conducted in India and also how data can shared and tracked with external collaborators such as ourselves. A framework to improve data sharing for research collaborations, including DNA was proposed as a project outcome. The complexities of sharing biological data has been investigated via a visit to India. A flagship sustainable project between Rural Clinical School UNSW and PHFI would illustrate a model of data sharing platforms.

Keywords: data sharing, collaboration, public health research, chronic disease

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10042 Addressing Sexual Health in Males with Spinal Cord Injury in Rural South India: Using the Knowledge to Action Framework to Evaluate an Education Manual on Improving Knowledge, Attitudes and Practices

Authors: Cassandra Maffei, Effie Pomaki, Salomé Deslauriers-Brouillard, Levana Dahan, Caroline Storr, Ramasubramanian Ponnusamy, Philippe S. Archambault

Abstract:

Sexual health education following spinal cord injury (SCI) remains poorly integrated into the rehabilitation process, especially in low-income countries where the topics of disability and sexuality are stigmatized. This research aimed to evaluate a sexual health manual that was created and distributed amongst males with SCI who had received rehabilitation services at Amar Seva Sangam (ASSA), a rehabilitation center located in rural South India. A service evaluation was completed to collect data from a convenience sample of 37 males with spinal cord injuries. Data were analyzed using descriptive statistics and content analysis. The service evaluation showed that the manual was well received by the sample and had positive impacts on secondary outcome measures, including relationship dynamics and quality of life. It can thus be used as an effective adjunct tool to support the improvement of sexual health knowledge, attitudes, and practices of individuals with SCI.

Keywords: spinal cord injury, sexual health, rehabilitation, India, education, service evaluation

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10041 Developing Medical Leaders: A Realistic Evaluation Study for Improving Patient Safety and Maximising Medical Engagement

Authors: Lisa Fox, Jill Aylott

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There is a global need to identify ways to engage doctors in non-clinical matters such as medical leadership, service improvement and health system transformation. Using the core principles of Realistic Evaluation (RE), this study examined what works, for doctors of different grades, specialities and experience in an acute NHS Hospital Trust in the UK. Realistic Evaluation is an alternative to more traditional cause and effect evaluation models and seeks to understand the interdependencies of Context, Mechanism and Outcome proposing that Context (C) + Mechanism (M) = Outcome (O). In this study, the context, mechanism and outcome were examined from within individual medical leaders to determine what enables levels of medical engagement in a specific improvement project to reduce hospital inpatient mortality. Five qualitative case studies were undertaken with consultants who had regularly completed mortality reviews over a six month period. The case studies involved semi-structured interviews to test the theory behind the drivers for medical engagement. The interviews were analysed using a theory-driven thematic analysis to identify CMO configurations to explain what works, for whom and in what circumstances. The findings showed that consultants with a longer length of service became more engaged if there were opportunities to be involved in the beginning of an improvement project, with more opportunities to affect the design. Those that are new to a consultant role were more engaged if they felt able to apply any learning directly into their own settings or if they could use it as an opportunity to understand more about the organisation they are working in. This study concludes that RE is a useful methodology for better understanding the complexities of motivation and consultant engagement in a trust wide service improvement project. The study showed that there should be differentiated and bespoke training programmes to maximise each individual doctor’s propensity for medical engagement. The RE identified that there are different ways to ensure that doctors have the right skills to feel confident in service improvement projects.

Keywords: realistic evaluation, medical leadership, medical engagement, patient safety, service improvement

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10040 Effective Budget Utilization for the Production of Better Health Professionals

Authors: Tesfahiwot Abay Weldearegay

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Ethiopian Federal ministry of health, in collaboration with different partners, provides financial support from sustainable development grants and global fund budget sources to Regional health science colleges through the regional health bureau to improve the quality of training and avail professionals based on the regional health bureau demand from the year of 2012 to 2019EC. It was mainly focused on health extension workers (HEW) Level III&IV, Health Information technicians (HIT), Emergency Medical technicians (EMT), laboratory technicians, Pharmacy technicians, Anesthesia Level V, Radiography, midwifery, Environmental health and biomedical equipment technician. Laboratory technician, Radiography and Pharmacy technician, was retooling program. The study aims at assessing the Utilization and outcome of budgets transferred through regional health bureau to regional health science colleges. The study used both quantitative and qualitative approaches to develop sufficient data to explain the utilization of the budget, and outcomes obtained from the transferred budget and to identify the gaps. The data for the study were obtained through structured questionnaires and interviews was conducted to increase the reliability of the data. Nationally, students enrolled in different disciplines at RHSC through budget support for RHB to improve the quality of training were 87 840 students and the total Budget transferred, according to MOU was 895,752,038 Ethiopian birr. Among the students enrolled nationally in different disciplines at RHSC through budget support only 72% of students have graduated from different disciplines. In Hareri and Addis Ababa, all enrolled students were graduated (100%). At the same time, Oromia 69%, Amara 77%, SNNP 58% students graduated, respectively. The demand of the regional health bureau and the enrollment capacity of health science colleges increased from year to year. The financial support added great value to the HSCs to cop with problems related to student fees, skill lab materials and renovation.

Keywords: emergency medical technician, radiography, Biomedical, health extension

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10039 The Development of the Psychosomatic Nursing Model from an Evidence-Based Action Research on Proactive Mental Health Care for Medical Inpatients

Authors: Chia-Yi Wu, Jung-Chen Chang, Wen-Yu Hu, Ming-Been Lee

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In nearly all physical health conditions, suicide risk is increased compared to healthy people even after adjustment for age, gender, mental health, and substance use diagnoses. In order to highlight the importance of suicide risk assessment for the inpatients and early identification and engagement for inpatients’ mental health problems, a study was designed aiming at developing a comprehensive psychosomatic nursing engagement (PSNE) model with standardized operation procedures informing how nurses communicate, assess, and engage with the inpatients with emotional distress. The purpose of the study was to promote the gatekeeping role of clinical nurses in performing brief assessment and interventions to detect depression and anxiety symptoms among the inpatients, particularly in non-psychiatric wards. The study will be carried out in a 2000-bed university hospital in Northern Taiwan in 2019. We will select a ward for trial and develop feasible procedures and in-job training course for the nurses to offer mental health care, which will also be validated through professional consensus meeting. The significance of the study includes the following three points: (1) The study targets at an important but less-researched area of PSNE model in the cultural background of Taiwan, where hospital service is highly accessible, but mental health and suicide risk assessment are hardly provided by non-psychiatric healthcare personnel. (2) The issue of PSNE could be efficient and cost-effective in the identification of suicide risks at an early stage to prevent inpatient suicide or to reduce future suicide risk by early treatment of mental illnesses among the high-risk group of hospitalized patients who are more than three-times lethal to suicide. (3) Utilizing a brief tool with its established APP ('The Five-item Brief Symptom Rating Scale, BSRS-5'), we will invent the standardized procedure of PSNE and referral steps in collaboration with the medical teams across the study hospital. New technological tools nested within nursing assessment/intervention will concurrently be invented to facilitate better care quality. The major outcome measurements will include tools for early identification of common mental distress and suicide risks, i.e., the BSRS-5, revised BSRS-5, and the 9-item Concise Mental Health Checklist (CMHC-9). The main purpose of using the CMHC-9 in clinical suicide risk assessment is mainly to provide care and build-up therapeutic relationship with the client, so it will also be used to nursing training highlighting the skills of supportive care. Through early identification of the inpatients’ depressive symptoms or other mental health care needs such as insomnia, anxiety, or suicide risk, the majority of the nursing clinicians would be able to engage in critical interventions that alleviate the inpatients’ suffering from mental health problems, given a feasible nursing input.

Keywords: mental health care, clinical outcome improvement, clinical nurses, suicide prevention, psychosomatic nursing

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10038 Effect of Cistanche tinctoria Methanolic Extract on the Maternal-Fetal Outcome and Oxidative Stress Biomarkers of Streptozotocin-Induced Diabetic Rats

Authors: Amina Bouzitouna, Kheireddine Ouali, Sandra Amri, Houria Rahmoun, Mourad Bensouilah

Abstract:

Aim of this study: To evaluate the effect of Cisthanche tinctoria treatment on maternal-fetal outcome and antioxidant systems of streptozotocin-induced diabetic rats. Materials and methods: Virgin female Wistar rats were injected with 50 mg/kg streptozotocin before mating. Oral administration of an methanolic extract of Cistanche tinctoria was given to non-diabetic and diabetic pregnant rats at doses of 200 mg/kg from 0 to 19th day of pregnancy. At day 20 of pregnancy the rats were killed and a maternal blood sample was collected for the determination Vitamin C (Vit C) and malonaldehyde (MDA). The gravid uterus was weighed with its contents and fetuses were analyzed. Results and conclusion: The data showed that the diabetic dams presented an increased glycemic level, resorption, placental weight, placental index, and fetal anomalies, and reduced VIT C and MDA determinations, live fetuses, maternal weight gain, gravid uterine weight, and fetal weight. It was also verified that Cisthanche tictoria treatment had no hypoglycemic effect, did not improve maternal outcomes in diabetic rats, but it contributed to maintain GSH concentration similarly to non-diabetic groups, suggesting relation with the decreased incidence of visceral anomalies.

Keywords: cistanche tinctoria, diabetes, pregnancy, reproductive outcome, anomaly, orobanchacées

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10037 Functional Outcome of Femoral Neck System (FNS) In the Management of Neck of Femur Fractures

Authors: Ronak Mishra, Sachin Kale

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Background: The clinical outcome of a new fixation device (femoral neck system, FNS) for femoral neck fractures is not described properly. The main purpose of this study was to evaluate the functional outcome of the patients of femoral neck fractures treated with FNS. Methods: A retrospective study was done among patients aged 60 years or less. On the basis of inclusion and exclusion criteria a final sample size of 30 was considered. Blood loss, type of fracture internal fixation, and length of clinical follow-up were all acquired from patient records. The volume of blood loss was calculated. The mean and standard deviation of continuous variables were reported (with range). Harris Hip score (HHS) And Post op xrays at intervals(6 weeks, 6 months ,12 months ) we used to clinically asses the patient. Results: Out of all 60% were females and 40% were males. The mean age of the patients was. 44.12(+-) years The comparison of functional outcomes of the patients treated with FNS using Harris Hip Score. It showed a highly significant comparison between the patients at post operatively , 6 weeks and 3 months and 12 months . There were no postoperative complications seen among the patients. Conclusion: FNS offers superior biomechanical qualities and greatly improved overall build stability. It allows for a significant reduction in operation time, potentially lowering risks and consequences associated with surgery.

Keywords: FNS, trauma, hip, neck femur fracture, minimally invasive surgery

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10036 Predictors of Ante-Natal Care and Health Facility Delivery Services Utilization in a Rural Area in Plateau State

Authors: Lilian A. Okeke, I. Okeke, N. Waziri, S. Balogun, P. Nguku, O. Fawole

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Background: Access to ante-natal care services promotes safe motherhood and delivery with improved maternal and neonatal outcome. We conducted this study to identify factors influencing the utilization of antenatal care (ANC) and health delivery services. Methods: We conducted a cross sectional study. Households were numbered and a one in three sample was selected using a systematic sampling method. One hundred and ninety eight women who were either pregnant or had previous deliveries were interviewed using pretested structured questionnaires to obtain information on their socio-demographic characteristics, and reasons for non-utilization of ANC and health delivery services. We performed univariate and bivariate analysis using Epi info version 3.5.3. Results: The age of respondents ranged from (17-55 years) with a median age of 29 years. One hundred and ninety two (97%) utilized antenatal care services. Ninety three (47.9%) attended ANC at second trimester. More than half (58.6%) had ≥ 4 visits to ANC. One hundred and thirty one (66.2%) had their last delivery at home by a traditional birth attendant. Factors associated with ANC and health facility delivery services utilization were: age group 45-55 (OR 0.01; 95% CI: 0.00-0.16) and > 55 years (OR 0.03; 95% CI: 0.00-0.60), wife’s educational status (OR 3.17; 95% CI: 1.66-8.30), husband’s permission (OR 11.8; 95% CI 2.19-63.62), and distance ≥ 5km (OR 0.33; 95% CI: 0.16-0.60). Conclusion: ANC services were well utilized. Most women did not book early and had their last delivery at home. Predictors of ANC use and health facility delivery were age, wife’s educational status, husband's permission and long distance from health facility. A one-day health sensitization of the benefits of ANC utilization and the dangers of delivering at home was implemented.

Keywords: ante natal care, health facility, delivery services, rural area, Plateau state

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10035 Comparing the Educational Effectiveness of eHealth to Deliver Health Knowledge between Higher Literacy Users and Lower Literacy Users

Authors: Yah-Ling Hung

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eHealth is undoubtedly emerging as a promising vehicle to provide information for individual self-care management. However, the accessing ability, reading strategies and navigating behavior between higher literacy users and lower literacy users are significantly different. Yet, ways to tailor audiences’ health literacy and develop appropriate eHealth to feed their need become a big challenge. The purpose of this study is to compare the educational effectiveness of eHealth to deliver health knowledge between higher literacy users and lower literacy users, thus establishing useful design strategies of eHealth for users with different level of health literacy. The study was implemented in four stages, the first of which developed a website as the testing media to introduce health care knowledge relating to children’s allergy. Secondly, a reliability and validity test was conducted to make sure that all of the questions in the questionnaire were good indicators. Thirdly, a pre-post knowledge test was conducted with 66 participants, 33 users with higher literacy and 33 users with lower literacy respectively. Finally, a usability evaluation survey was undertaken to explore the criteria used by users with different levels of health literacy to evaluate eHealth. The results demonstrated that the eHealth Intervention in both groups had a positive outcome. There was no significant difference between the effectiveness of eHealth intervention between users with higher literacy and users with lower literacy. However, the average mean of lower literacy group was marginally higher than the average mean of higher literacy group. The findings also showed that the criteria used to evaluate eHealth could be analyzed in terms of the quality of information, appearance, appeal and interaction, but the users with lower literacy have different evaluation criteria from those with higher literacy. This is an interdisciplinary research which proposes the sequential key steps that incorporate the planning, developing and accessing issues that need to be considered when designing eHealth for patients with varying degrees of health literacy.

Keywords: eHealth, health intervention, health literacy, usability evaluation

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10034 The Influence of Project-Based Learning and Outcome-Based Education: Interior Design Tertiary Students in Focus

Authors: Omneya Messallam

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Technology has been developed dramatically in most of the educational disciplines. For instance, digital rendering subject, which is being taught in both Interior and Architecture fields, is witnessing almost annually updated software versions. A lot of students and educators argued that there will be no need for manual rendering techniques to be learned. Therefore, the Interior Design Visual Presentation 1 course (ID133) has been chosen from the first level of the Interior Design (ID) undergraduate program, as it has been taught for six years continually. This time frame will facilitate sound observation and critical analysis of the use of appropriate teaching methodologies. Furthermore, the researcher believes in the high value of the manual rendering techniques. The course objectives are: to define the basic visual rendering principles, to recall theories and uses of various types of colours and hatches, to raise the learners’ awareness of the value of studying manual render techniques, and to prepare them to present their work professionally. The students are female Arab learners aged between 17 and 20. At the outset of the course, the majority of them demonstrated negative attitude, lacking both motivation and confidence in manual rendering skills. This paper is a reflective appraisal of deploying two student-centred teaching pedagogies which are: Project-based learning (PBL) and Outcome-based education (OBE) on ID133 students. This research aims of developing some teaching strategies to enhance the quality of teaching in this given course over an academic semester. The outcome of this research emphasized the positive influence of applying such educational methods on improving the quality of students’ manual rendering skills in terms of: materials, textiles, textures, lighting, and shade and shadow. Furthermore, it greatly motivated the students and raised the awareness of the importance of learning the manual rendering techniques.

Keywords: project-based learning, outcome-based education, visual presentation, manual render, personal competences

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10033 Evaluating Health-Related Quality of Life of Lost to Follow-Up Tuberculosis Patients in Yemen

Authors: Ammar Ali Saleh Jaber, Amer Hayat Khan, Syed Azhar Syed Sulaiman

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Tuberculosis (TB) is considered as a major disease that affects daily activities and impairs health-related quality of life (HRQoL). The impact of TB on HRQoL can affect treatment outcome and may lead to treatment defaulting. Therefore, this study aims to evaluate the HRQoL of TB treatment lost to follow-up during and after treatment in Yemen. For this aim, this prospective study enrolled a total of 399 TB lost to follow-up patients between January 2011 and December 2015. By applying HRQoL criteria, only 136 fill the survey during treatment. Moreover, 96 were traced and fill out the HRQoL survey. All eight HRQol domains were categorized into the physical component score (PCS) and mental component score (MCS), which were calculated using QM scoring software. Results show that all lost to follow-up TB patients reported a score less than 47 for all eight domains, except general health (67.3) during their treatment period. Low scores of 27.9 and 29.8 were reported for emotional role limitation (RE) and mental health (MH), respectively. Moreover, the mental component score (MCS) was found to be only 28.9. The trace lost follow-up shows a significant improvement in all eight domains and a mental component score of 43.1. The low scores of 27.9 and 29.8 for role emotion and mental health, respectively, in addition to the MCS score of 28.9, show that severe emotional condition and reflect the higher depression during treatment period that can result to lost to follow-up. The low MH, RE, and MCS can be used as a clue for predicting future TB treatment lost to follow-up.

Keywords: Yemen, tuberculosis, health-related quality of life, Khat

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10032 Measurement and Monitoring of Graduate Attributes via iCGPA Implementation and ACADEMIA Programming: UNIMAS Case Study

Authors: Shanti Faridah Salleh, Azzahrah Anuar, Hamimah Ujir, Rohana Sapawi, Wan Hashim Wan Ibrahim, Noraziah Abdul Wahab, Majina Sulaiman, Raudhah Ahmadi, Al-Khalid Othman, Johari Abdullah

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Integrated Cumulative Grade Point Average or iCGPA is an evaluation and reporting system that represents a comprehensive development of students’ achievement in their academic programs. Universiti Malaysia Sarawak, UNIMAS has started its implementation of iCGPA in 2016. iCGPA is driven by the Outcome-Based Education (OBE) system that has been long integrated into the higher education in Malaysia. iCGPA is not only a tool to enhance the OBE concept through constructive alignment but it is also an integrated mechanism to assist various stakeholders in making decisions or planning for program improvement. The outcome of this integrated system is the reporting of students’ academic performance in terms of cognitive (knowledge), psychomotor (skills), and affective (attitude) of which the students acquire throughout the duration of their study. The iCGPA reporting illustrates the attainment of student’s attribute in the eight domains of learning outcomes listed in the Malaysian Qualifications Framework (MQF). This paper discusses on the implementation of iCGPA in UNIMAS on the policy and strategy to direct the whole university to implement the iCGPA. The steps and challenges in integrating the exsting Outcome-Based Education and utilising iCGPA as a tool to quantify the students’ achievement are also highlighted in this paper. Finally, the ACADEMIA system, which is a dedicated centralised program ensure the implementation of iCGPA is a success has been developed. This paper discusses the structure and the analysis of ACADEMIA program and concludes the analysis made on the improvement made on the implementation of constructive alignment in all 40 programs involves in iCGPA implementation.

Keywords: constructive alignment, holistic graduates, mapping of assessment, programme outcome

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10031 Integration of Sustainable Development into the Bachelor of Electrical and Electronics Engineering Degree Program in UNITEN

Authors: Nagaletchumi Balasubramaniam, A. Mohd Isa

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Engineers have a leading role in planning, designing, building and ensuring a sustainable future. Universiti Tenaga Nasional (UNITEN) acknowledges this role by assigning sustainable development as one of the expected traits that a UNITEN student should have upon graduation, formalized as the Programme Outcomes 7 (PO7): Students graduating from the Bachelor of Electrical and Electronics (BEEE) program will have the ability to demonstrate knowledge of the impact of professional engineering solutions in environmental contexts and the need for sustainable development. This paper explores how PO7 is integrated within the BEEE (Hons) program in UNITEN under the framework of Outcome Base Education (OBE). Five technical core courses were specifically assigned by UNITEN to reflect attainment of PO7. Under UNITEN’s definition, the attainment criterion of a PO is set as 70/40. This means that 70% of the students taking the course achieve at least 40% of the full marks. The paper first gives an overview of the overall OBE system as applied in UNITEN, particularly describing the key and supporting courses approach adopted for each PO. Then, the paper reviews the mechanism in which PO7 is taught and assessed in the five assigned courses. Data on PO7 attainment from four of the five courses are collected and analyzed for two student cohorts to investigate the interrelationship between the courses assigned to PO7. It was found that the five courses have different mechanisms for assessing PO7, and that generally PO7 is attained for the assigned courses. This reflects positively on the UNITEN method for integrating sustainable development within the engineering undergraduate programme.

Keywords: direct assessment, engineering education, outcome base education, programme outcome, sustainable development

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10030 Concussion: Clinical and Vocational Outcomes from Sport Related Mild Traumatic Brain Injury

Authors: Jack Nash, Chris Simpson, Holly Hurn, Ronel Terblanche, Alan Mistlin

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There is an increasing incidence of mild traumatic brain injury (mTBI) cases throughout sport and with this, a growing interest from governing bodies to ensure these are managed appropriately and player welfare is prioritised. The Berlin consensus statement on concussion in sport recommends a multidisciplinary approach when managing those patients who do not have full resolution of mTBI symptoms. There are as of yet no standardised guideline to follow in the treatment of complex cases mTBI in athletes. The aim of this project was to analyse the outcomes, both clinical and vocational, of all patients admitted to the mild Traumatic Brain Injury (mTBI) service at the UK’s Defence Military Rehabilitation Centre Headley Court between 1st June 2008 and 1st February 2017, as a result of a sport induced injury, and evaluate potential predictive indicators of outcome. Patients were identified from a database maintained by the mTBI service. Clinical and occupational outcomes were ascertained from medical and occupational employment records, recorded prospectively, at time of discharge from the mTBI service. Outcomes were graded based on the vocational independence scale (VIS) and clinical documentation at discharge. Predictive indicators including referral time, age at time of injury, previous mental health diagnosis and a financial claim in place at time of entry to service were assessed using logistic regression. 45 Patients were treated for sport-related mTBI during this time frame. Clinically 96% of patients had full resolution of their mTBI symptoms after input from the mTBI service. 51% of patients returned to work at their previous vocational level, 4% had ongoing mTBI symptoms, 22% had ongoing physical rehabilitation needs, 11% required mental health input and 11% required further vestibular rehabilitation. Neither age, time to referral, pre-existing mental health condition nor compensation seeking had a significant impact on either vocational or clinical outcome in this population. The vast majority of patients reviewed in the mTBI clinic had persistent symptoms which could not be managed in primary care. A consultant-led, multidisciplinary approach to the diagnosis and management of mTBI has resulted in excellent clinical outcomes in these complex cases. High levels of symptom resolution suggest that this referral and treatment pathway is successful and is a model which could be replicated in other organisations with consultant led input. Further understanding of both predictive and individual factors would allow clinicians to focus treatments on those who are most likely to develop long-term complications following mTBI. A consultant-led, multidisciplinary service ensures a large number of patients will have complete resolution of mTBI symptoms after sport-related mTBI. Further research is now required to ascertain the key predictive indicators of outcome following sport-related mTBI.

Keywords: brain injury, concussion, neurology, rehabilitation, sports injury

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10029 Risk Factors and Outcome of Free Tissue Transfer at a Tertiary Care Referral Center

Authors: Majid Khan

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Introduction: In this era of microsurgery, free flap holds a remarkable spot in reconstructive surgery. A free flap is well suited for composite defects as it provides sufficient and well-vascularized tissue for coverage. We report our experience with the use of the free flaps for the reconstruction of composite defects. Methods: This is a retrospective case series (chart review) of patients who underwent reconstruction of composite defects with a free flap at Aga Khan University Hospital, Karachi (Pakistan) from January 01, 2015, to December 31, 2019. Data were collected for patient demographics, size of the defect, size of flap, recipient vessels, postoperative complications, and outcome of the free flap. Results: Over this period, 532 free flaps are included in this study. The overall success rate is 95.5%. The mean age of the patient was 44.86 years. In 532 procedures, there were 448 defects from tumor ablation of head and neck cancer. The most frequent free flap was the anterolateral thigh flap in 232 procedures. In this study, the risk factor hypertension (p=0.004) was found significant for wound dehiscence, preop radiation/chemotherapy (p=0.003), and malnutrition (p=0.005) were found significant for fistula formation. Malnutrition (p=0.02) and use of vein grafts (p=0.025) were significant factors for flap failure. Conclusion: Free tissue transfer is a reliable option for the reconstruction of large and composite defects. Hypertension, malnutrition, and preoperative radiotherapy can cause significant morbidity.

Keywords: free flap, free flap failure, risk factors for flap failure, free flap outcome

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10028 Evaluating the Impact of a Child Sponsorship Program on Paediatric Health and Development in Calauan, Philippines: A Retrospective Audit

Authors: Daniel Faraj, Arabella Raupach, Charlotte Hespe, Helen Wilcox, Kristie-Lee Anning

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Aim: International child sponsorship programs comprise a considerable proportion of global aid accessible to the general population. Team Philippines (TP), a healthcare and welfare initiative run in association with the University of Notre Dame Sydney since 2013, leads a holistic sponsorship program for thirty children from Calauan, Philippines. To date, empirical research has not been performed on the overall success and impact of the TP child sponsorship program. As such, this study aims to evaluate its effectiveness in improving pediatric outcomes. Methods: Study cohorts comprised thirty sponsored and twenty-nine age- and gender-matched non-sponsored children. Data were extracted from the TP Medical Director database and lifestyle questionnaires for July-November 2019. Outcome measures included anthropometry, markers of medical health, dental health, exercise, and diet. Statistical analyses were performed in SPSS. Results: Sponsorship resulted in fewer medical diagnoses and prescription medications, superior dental health, and improved diet. Further, sponsored children may show a clinically significant trend toward improved physical health. Sponsorship did not affect growth and development metrics or levels of physical activity. Conclusions: The TP child sponsorship program significantly impacts positive pediatric health outcomes in the Calauan community. The strength of the program lies in its holistic, sustainable, and community-based model, which is enabled by effective international child sponsorship. This study further supports the relationship between supporting early livelihood and improved health in the pediatric population.

Keywords: child health, public health, health status disparities, healthcare disparities, social determinants of health, morbidity, community health services, culturally competent care, medically underserved areas, population health management, Philippines

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10027 The Long-Term Impact of Health Conditions on Social Mobility Outcomes: A Modelling Study

Authors: Lise Retat, Maria Carmen Huerta, Laura Webber, Franco Sassi

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Background: Intra-generational social mobility (ISM) can be defined as the extent to which individuals change their socio-economic position over a period of time or during their entire life course. The relationship between poor health and ISM is established. Therefore, quantifying the impact that potential health policies have on ISM now and into the future would provide evidence for how social inequality could be reduced. This paper takes the condition of overweight and obesity as an example and estimates the mean earning change per individual if the UK were to introduce policies to effectively reduce overweight and obesity. Methods: The HealthLumen individual-based model was used to estimate the impact of obesity on social mobility measures, such as earnings, occupation, and wealth. The HL tool models each individual's probability of experiencing downward ISM as a result of their overweight and obesity status. For example, one outcome of interest was the cumulative mean earning per person of implementing a policy which would reduce adult overweight and obesity by 1% each year between 2020 and 2030 in the UK. Results: Preliminary analysis showed that by reducing adult overweight and obesity by 1% each year between 2020 and 2030, the cumulative additional mean earnings would be ~1,000 Euro per adult by 2030. Additional analysis will include other social mobility indicators. Conclusions: These projections are important for illustrating the role of health in social mobility and for providing evidence for how health policy can make a difference to social mobility outcomes and, in turn, help to reduce inequality.

Keywords: modelling, social mobility, obesity, health

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10026 Soccer Match Result Prediction System (SMRPS) Model

Authors: Ajayi Olusola Olajide, Alonge Olaide Moses

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Predicting the outcome of soccer matches poses an interesting challenge for which it is realistically impossible to successfully do so for every match. Despite this, there are lots of resources that are being expended on the correct prediction of soccer matches weekly, and all over the world. Soccer Match Result Prediction System Model (SMRPSM) is a system that is proposed whereby the results of matches between two soccer teams are auto-generated, with the added excitement of giving users a chance to test their predictive abilities. Soccer teams from different league football are loaded by the application, with each team’s corresponding manager and other information like team location, team logo and nickname. The user is also allowed to interact with the system by selecting the match to be predicted and viewing of the results of completed matches after registering/logging in.

Keywords: predicting, soccer match, outcome, soccer, matches, result prediction, system, model

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10025 Motivations, Communication Dimensions, and Perceived Outcomes in the Multi-Sectoral Collaboration of the Visitor Management Program of Mount Makiling Forest Reserve in Los Banos, Laguna, Philippines

Authors: Charmaine B. Distor

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Collaboration has long been recognized in different fields, but there’s been little research on operationalizing it especially on a multi-sectoral setting as per the author’s best knowledge. Also, communication is one of the factors that is usually overlooked when studying it. Specifically, this study aimed to describe the organizational profile and tasks of collaborators in the visitor management program of Make It Makiling (MIM). It also identified the factors that motivated collaborators to collaborate in MIM while determining the communication dimensions in the collaborative process. It also determined the communication channels used by collaborators in MIM while identifying the outcomes of collaboration in MIM. This study also found out if a relationship exists between collaborators’ motivations for collaboration and their perceived outcomes of collaboration, and collaborators' communication dimensions and their perceived outcomes of collaboration. Lastly, it also provided recommendations to improve the communication in MIM. Data were gathered using a self-administered survey that was patterned after Mattessich and Monsey’s (1992) collaboration experience questionnaire. Interviews and secondary sources mainly provided by the Makiling Center for Mountain Ecosystems (MCME) were also used. From the seven MIM collaborating organizations that were selected through purposive sampling, 86 respondents were chosen. Then, data were analyzed through frequency counts, percentages, measures of central tendencies, and Pearson’s and Spearman rho correlations. Collaborators’ length of collaboration ranged from seven to twenty years. Furthermore, six out of seven of the collaborators were involved in the task of 'emergency, rescue, and communication'. For the other aspect of the antecedents, the history of previous collaboration efforts ranked as the highest rated motivation for collaboration. In line with this, the top communication dimension is the governance while perceived effectiveness garnered the highest overall average among the perceived outcomes of collaboration. Results also showed that the collaborators highly rely on formal communication channels. Meetings and memos were the most commonly used communication channels throughout all tasks under the four phases of MIM. Additionally, although collaborators have a high view towards their co-collaborators, they still rely on MCME to act as their manager in coordinating with one another indirectly. Based on the correlation analysis, antecedent (motivations)-outcome relationship generally had positive relationships. However, for the process (communication dimensions)-outcome relationship, both positive and negative relationships were observed. In conclusion, this study exhibited the same trend with existing literature which also used the same framework. For the antecedent-outcome relationship, it can be deduced that MCME, as the main organizer of MIM, can focus on these variables to achieve their desired outcomes because of the positive relationships. For the process-outcome relationship, MCME should also take note that there were negative relationships where an increase in the said communication dimension may result in a decrease in the desired outcome. Recommendations for further study include a methodology that contains: complete enumeration or any parametric sampling, a researcher-administered survey, and direct observations. These might require additional funding, but all may yield to richer data.

Keywords: antecedent-outcome relationship, carrying capacity, organizational communication, process-outcome relationship

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10024 Nurse Practitioner Led Pediatric Primary Care Clinic in a Tertiary Care Setting: Improving Access and Health Outcomes

Authors: Minna K. Miller, Chantel. E. Canessa, Suzanna V. McRae, Susan Shumay, Alissa Collingridge

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Primary care provides the first point of contact and access to health care services. For the pediatric population, the goal is to help healthy children stay healthy and to help those that are sick get better. Primary care facilitates regular well baby/child visits; health promotion and disease prevention; investigation, diagnosis and management of acute and chronic illnesses; health education; both consultation and collaboration with, and referral to other health care professionals. There is a protective association between regular well-child visit care and preventable hospitalization. Further, low adherence to well-child care and poor continuity of care are independently associated with increased risk of hospitalization. With a declining number of family physicians caring for children, and only a portion of pediatricians providing primary care services, it is becoming increasingly difficult for children and their families to access primary care. Nurse practitioners are in a unique position to improve access to primary care and improve health outcomes for children. Limited literature is available on the nurse practitioner role in primary care pediatrics. The purpose of this paper is to describe the development, implementation and evaluation of a Nurse Practitioner-led pediatric primary care clinic in a tertiary care setting. Utilizing the participatory, evidence-based, patient-focused process for advanced practice nursing (PEPPA framework), this paper highlights the results of the initial needs assessment/gap analysis, the new service delivery model, populations served, and outcome measures.

Keywords: access, health outcomes, nurse practitioner, pediatric primary care, PEPPA framework

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10023 Policy Analysis on Family Planning in Pakistan: Providing Options to Improve Service Provision

Authors: M. Moiz

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Family planning has been known and accepted as a key tool to decrease fertility, provides birth spacing and plays a vital role to attain better outcomes for maternal and child health. Pakistan initiated various family planning programs to preserve maternal and child health for six decades. However, less contraceptive use leading to high fertility and low birth spacing is ultimately a risk for increasing morbidity and mortality. As an outcome of 2012 London Summit on Family Planning where 20 countries including Pakistan made its commitment to increase contraceptive prevalence rate by 55% and provide a universal access to reproductive health to protect human rights of women and ensure safe, choice informed and affordable contraceptives throughout the country. This paper will assess some of the factors of service delivery, coverage and the role of Ministry of Health and Population Welfare Department in providing Family Planning services and how it can be improved in Pakistan. In view of Pakistan Demographic Health Survey 2017-18, there are total nine million potential users of contraceptives and one third among them never used with unmet need while every fifth pregnancy ends into abortion indicates need for Family Planning services. In order to explain this concern, a comprehensive analysis has been done on role of governance in implementing family planning policy and its limitations are discussed. Moreover, this paper highlights policy options and recommendations for improving service provision through public and private sector in creating demand for Family Planning services in Pakistan.

Keywords: contraceptive prevalence rate, family planning, maternal and child health, policy options

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10022 Critical Factors Affecting the Implementation of Total Quality Management in the Construction Industry in U. A. E.

Authors: Firas Mohamad Al-Sabek

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The Purpose of the paper is to examine the most critical and important factor which will affect the implementation of Total Quality Management (TQM) in the construction industry in the United Arab Emirates. It also examines the most effected Project outcome from implementing TQM. A framework was also proposed depending on the literature studies. The method used in this paper is a quantitative study. A survey with a sample of 60 respondents was created and distributed in a construction company in Abu Dhabi, which includes 15 questions to examine the most critical factor that will affect the implementation of TQM in addition to the most effected project outcome from implementing TQM. The survey showed that management commitment is the most important factor in implementing TQM in a construction company. Also it showed that Project cost is most effected outcome from the implementation of TQM. Management commitment is very important for implementing TQM in any company. If the management loose interest in quality then everyone in the organization will do so. The success of TQM will depend mostly on the top of the pyramid. Also cost is reduced and money is saved when the project team implement TQM. While if no quality measures are present within the team, the project will suffer a commercial failure. Based on literature, more factors can be examined and added to the model. In addition, more construction companies could be surveyed in order to obtain more accurate results. Also this study could be conducted outside the United Arab Emirates for further enchantment.

Keywords: construction project, total quality management, management commitment, cost, theoretical framework

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10021 Preservice EFL Teachers in a Blended Professional Development Program: Learning to Teach Speech Acts

Authors: Mei-Hui Liu

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This study examines the effectiveness of a blended professional development program on preservice EFL (English as a foreign language) teachers’ learning to teach speech acts with the advent of Information and Communication Technology, researchers and scholars underscore the significance of integrating online and face-to-face learning opportunities in the teacher education field. Yet, a paucity of evidence has been documented to investigate the extent to which such a blended professional learning model may impact real classroom practice and student learning outcome. This yearlong project involves various stakeholders, including 25 preservice teachers, 5 English professionals, and 45 secondary school students. Multiple data sources collected are surveys, interviews, reflection journals, online discussion messages, artifacts, and discourse completion tests. Relying on the theoretical lenses of Community of Inquiry, data analysis depicts the nature and process of preservice teachers’ professional development in this blended learning community, which triggers and fosters both face-to-face and synchronous/asynchronous online interactions among preservice teachers and English professionals (i.e., university faculty and in-service teachers). Also included is the student learning outcome after preservice teachers put what they learn from the support community into instructional practice. Pedagogical implications and research suggestions are further provided based on the research findings and limitations.

Keywords: blended professional development, preservice EFL teachers, speech act instruction, student learning outcome

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10020 Achievements of Healthcare Services Vis-À-Vis the Millennium Development Goals Targets: Evidence from Pakistan

Authors: Saeeda Batool, Ather Maqsood Ahmed

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This study investigates the impact of public healthcare facilities and socio-economic circumstances on the status of child health in Pakistan. The complete analysis is carried out in correspondence with fourth and sixth millennium development goals. Further, the health variables chosen are also inherited from targeted indicators of the mentioned goals (MDGs). Trends in the Human Opportunity Index (HOI) for both health inequalities and coverage are analyzed using the Pakistan Social and Living Standards Measurement (PLSM) data set for 2001-02 to 2012-13 at the national and provincial level. To reveal the relative importance of each circumstance in achieving the targeted values for child health, Shorrocks decomposition is applied on HOI. The annual point average growth rate of HOI is used to simulate the time period for the achievement of target set by MDGs and universal access also. The results indicate an improvement in HOI for a reduction in child mortality rates from 52.1% in 2001-02 to 67.3% in 2012-13, which confirms the availability of healthcare opportunities to a larger segment of society. Similarly, immunization against measles and other diseases such as Diphtheria, Polio, Bacillus Calmette-Guerin (BCG), and Hepatitis has also registered an improvement from 51.6% to 69.9% during the period of study at the national level. On a positive note, no gender disparity has been found for child health indicators and that health outcome is mostly affected by the parental and geographical features and availability of health infrastructure. However, the study finds that this achievement has been uneven across provinces. Pakistan is not only lagging behind in achieving its health goals, disappointingly with the current rate of health care provision, but it will take many additional years to achieve its targets.

Keywords: socio-economic circumstances, unmet MDGs, public healthcare services, child and infant mortality

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10019 Outcomes of Pain Management for Patients in Srinagarind Hospital: Acute Pain Indicator

Authors: Chalermsri Sorasit, Siriporn Mongkhonthawornchai, Darawan Augsornwan, Sudthanom Kamollirt

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Background: Although knowledge of pain and pain management is improving, they are still inadequate to patients. The Nursing Division of Srinagarind Hospital is responsible for setting the pain management system, including work instruction development and pain management indicators. We have developed an information technology program for monitoring pain quality indicators, which was implemented to all nursing departments in April 2013. Objective: To study outcomes of acute pain management in process and outcome indicators. Method: This is a retrospective descriptive study. The sample population was patients who had acute pain 24-48 hours after receiving a procedure, while admitted to Srinagarind Hospital in 2014. Data were collected from the information technology program. 2709 patients with acute pain from 10 Nursing Departments were recruited in the study. The research tools in this study were 1) the demographic questionnaire 2) the pain management questionnaire for process indicators, and 3) the pain management questionnaire for outcome indicators. Data were analyzed and presented by percentages and means. Results: The process indicators show that nurses used pain assessment tool and recorded 99.19%. The pain reassessment after the intervention was 96.09%. The 80.15% of the patients received opioid for pain medication and the most frequency of non-pharmacological intervention used was positioning (76.72%). For the outcome indicators, nearly half of them (49.90%) had moderate–severe pain, mean scores of worst pain was 6.48 and overall pain was 4.08. Patient satisfaction level with pain management was good (49.17%) and very good (46.62%). Conclusion: Nurses used pain assessment tools and pain documents which met the goal of the pain management process. Patient satisfaction with pain management was at high level. However the patients had still moderate to severe pain. Nurses should adhere more strictly to the guidelines of pain management, by using acute pain guidelines especially when pain intensity is particularly moderate-high. Nurses should also develop and practice a non-pharmacological pain management program to continually improve the quality of pain management. The information technology program should have more details about non-pharmacological pain techniques.

Keywords: outcome, pain management, acute pain, Srinagarind Hospital

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10018 Surgical Hip Dislocation of Femoroacetabular Impingement: Survivorship and Functional Outcomes at 10 Years

Authors: L. Hoade, O. O. Onafowokan, K. Anderson, G. E. Bartlett, E. D. Fern, M. R. Norton, R. G. Middleton

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Aims: Femoroacetabular impingement (FAI) was first recognised as a potential driver for hip pain at the turn of the last millennium. While there is an increasing trend towards surgical management of FAI by arthroscopic means, open surgical hip dislocation and debridement (SHD) remains the Gold Standard of care in terms of reported outcome measures. (1) Long-term functional and survivorship outcomes of SHD as a treatment for FAI are yet to be sufficiently reported in the literature. This study sets out to help address this imbalance. Methods: We undertook a retrospective review of our institutional database for all patients who underwent SHD for FAI between January 2003 and December 2008. A total of 223 patients (241 hips) were identified and underwent a ten year review with a standardised radiograph and patient-reported outcome measures questionnaire. The primary outcome measure of interest was survivorship, defined as progression to total hip arthroplasty (THA). Negative predictive factors were analysed. Secondary outcome measures of interest were survivorship to further (non-arthroplasty) surgery, functional outcomes as reflected by patient reported outcome measure scores (PROMS) scores, and whether a learning curve could be identified. Results: The final cohort consisted of 131 females and 110 males, with a mean age of 34 years. There was an overall native hip joint survival rate of 85.4% at ten years. Those who underwent a THA were significantly older at initial surgery, had radiographic evidence of preoperative osteoarthritis and pre- and post-operative acetabular undercoverage. In those whom had not progressed to THA, the average Non-arthritic Hip Score and Oxford Hip Score at ten year follow-up were 72.3% and 36/48, respectively, and 84% still deemed their surgery worthwhile. A learning curve was found to exist that was predicated on case selection rather than surgical technique. Conclusion: This is only the second study to evaluate the long-term outcomes (beyond ten years) of SHD for FAI and the first outside the originating centre. Our results suggest that, with correct patient selection, this remains an operation with worthwhile outcomes at ten years. How the results of open surgery compared to those of arthroscopy remains to be answered. While these results precede the advent of collison software modelling tools, this data helps set a benchmark for future comparison of other techniques effectiveness at the ten year mark.

Keywords: femoroacetabular impingement, hip pain, surgical hip dislocation, hip debridement

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10017 A Systematic Review of Ethical Leadership in Tourism and Hospitality Settings

Authors: Majd Megheirkouni

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The aim of this study is to identify empirical studies that explore and investigate ethical leadership in order to assess and synthesize its impacts and outcomes. This study seeks to provide an evidence-informed answer to a set of questions on ethical leadership definition in the field of tourism and hospitality, its investigation, and examination, and its outcome. A systematic literature review, using medical science-based methodology, was conducted to synthesize research by reliable means. Four themes were identified from the analysis. These themes are: Ethical leaders’ characteristics, healthy work environment, ethical leadership effectiveness, and the application of ethical leadership across cultures. This study provides the potential to move hospitality and tourism leadership forward and encourage researchers to investigate new research topics. To the best of the author’s knowledge, this is the first systematic review focusing on ethical leadership in tourism and hospitality settings.

Keywords: ethical leadership, approach, outcome, tourism, hospitality, systematic review

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10016 Acupuncture in the Treatment of Parkinson's Disease-Related Fatigue: A Pilot Randomized, Controlled Study

Authors: Keng H. Kong, Louis C. Tan, Wing L. Aw, Kay Y. Tay

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Background: Fatigue is a common problem in patients with Parkinson's disease, with reported prevalence of up to 70%. Fatigue can be disabling and has adverse effects on patients' quality of life. There is currently no satisfactory treatment of fatigue. Acupuncture is effective in the treatment of fatigue, especially that related to cancer. Its role in Parkinson's disease-related fatigue is uncertain. Aims: To evaluate the clinical efficacy of acupuncture treatment in Parkinson's disease-related fatigue. Hypothesis: We hypothesize that acupuncture is effective in alleviating Parkinson's disease-related fatigue. Design: A single center, randomized, controlled study with two parallel arms. Participants: Forty participants with idiopathic Parkinson's disease will be enrolled. Interventions: Participants will be randomized to receive verum (real) acupuncture or placebo acupuncture. The retractable non-invasive sham needle will be used in the placebo group. The intervention will be administered twice a week for five weeks. Main outcome measures: The primary outcome will be the change in general fatigue score of the multidimensional fatigue inventory at week 5. Secondary outcome measures include other subscales of the multidimensional fatigue inventory, movement disorders society-unified Parkinson's disease rating scale, Parkinson's disease questionnaire-39 and geriatric depression scale. All outcome measures will be assessed at baseline (week 0), completion of intervention (week 5) and 4 weeks after completion of intervention (week 9). Results: To date, 23 participants have been recruited and nine have completed the study. The mean age is 63.5±14.2 years, mean duration of Parkinson’s disease is 6.4±1.8 years and mean MDS-UPDRS score is 8.3±2.8. The mean general fatigue score of the multidimensional fatigue inventory is 13.5±4.6. No significant adverse event related to acupuncture is noted. Potential significance: If the results are as expected, this study will provide preliminary scientific evidence for the efficacy of acupuncture in Parkinson's Disease-related fatigue, and opens the door for a larger multicentre trial to be performed. In the longer term, it may lead to the integration of acupuncture in the care of patients with Parkinson's disease.

Keywords: acupuncture, fatigue, Parkinson's disease, trial

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10015 The GRIT Study: Getting Global Rare Disease Insights Through Technology Study

Authors: Aneal Khan, Elleine Allapitan, Desmond Koo, Katherine-Ann Piedalue, Shaneel Pathak, Utkarsh Subnis

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Background: Disease management of metabolic, genetic disorders is long-term and can be cumbersome to patients and caregivers. Patient-Reported Outcome Measures (PROMs) have been a useful tool in capturing patient perspectives to help enhance treatment compliance and engagement with health care providers, reduce utilization of emergency services, and increase satisfaction with their treatment choices. Currently, however, PROMs are collected during infrequent and decontextualized clinic visits, which makes translation of patient experiences challenging over time. The GRIT study aims to evaluate a digital health journal application called Zamplo that provides a personalized health diary to record self-reported health outcomes accurately and efficiently in patients with metabolic, genetic disorders. Methods: This is a randomized controlled trial (RCT) (1:1) that assesses the efficacy of Zamplo to increase patient activation (primary outcome), improve healthcare satisfaction and confidence to manage medications (secondary outcomes), and reduce costs to the healthcare system (exploratory). Using standardized online surveys, assessments will be collected at baseline, 1 month, 3 months, 6 months, and 12 months. Outcomes will be compared between patients who were given access to the application versus those with no access. Results: Seventy-seven patients were recruited as of November 30, 2021. Recruitment for the study commenced in November 2020 with a target of n=150 patients. The accrual rate was 50% from those eligible and invited for the study, with the majority of patients having Fabry disease (n=48) and the remaining having Pompe disease and mitochondrial disease. Real-time clinical responses, such as pain, are being measured and correlated to disease-modifying therapies, supportive treatments like pain medications, and lifestyle interventions. Engagement with the application, along with compliance metrics of surveys and journal entries, are being analyzed. An interim analysis of the engagement data along with preliminary findings from this pilot RCT, and qualitative patient feedback will be presented. Conclusions: The digital self-care journal provides a unique approach to disease management, allowing patients direct access to their progress and actively participating in their care. Findings from the study can help serve the virtual care needs of patients with metabolic, genetic disorders in North America and the world over.

Keywords: eHealth, mobile health, rare disease, patient outcomes, quality of life (QoL), pain, Fabry disease, Pompe disease

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