SACM - United Kingdom
Permanent URI for this collectionhttps://drepo.sdl.edu.sa/handle/20.500.14154/9667
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Item Restricted The Use of the Skeletal Burden Score for Predicting Physical Outcomes in Patients with Fibrous Dysplasia(The University of Sheffield, 2024-08-19) Alhulwah, Arwa; Offiah, Amaka CEvaluating the extent of fibrous dysplasia (FD) is crucial for understanding the disease’s severity, monitoring its progression, and effectively managing and treating its complications. The skeletal burden score (SBS) is the sole tool available for assessing FD severity that is unaffected by aging or the use of bisphosphonate treatment for bone pain. However, due to the rarity of FD and its diverse manifestations, there are a limited number of studies that have focused on the utilisation of SBS in the assessment of FD involvement. This thesis presents a collection of original studies focusing on the applicability of SBS. The first two chapters were systematic reviews. The first one, investigated the SBS association with the quality of life (QoL) measures in FD patients. The second systematic review investigated the diagnostic accuracy of cross-sectional imaging modalities for the diagnosis of FD. We also measured the clinicians’ knowledge and use of SBS through an internationally disseminated online survey. The core research of this thesis involved conducting a multicentre study of FD/MAS patients from five collaborating sites in the United Kingdom and Saudi Arabia. The collected data were analysed to investigate three primary aims. First aim was to evaluate the agreement among five radiologists in measuring the SBS from bone scintigraphy scans presented in two different image formats. Second aim, to examine the quality of life (QoL) and highlighted the factors that influenced it, and to assess the relationship between SBS with the reported QoL and bone pain of the patient cohort. The third aim was to compare FD involvement on bone scintigraphy and whole-body magnetic resonance imaging (WB-MRI) scans. Also to evaluate the reliability of the SBS measured from WB-MRI scans, a novel approach. Our longitudinal study highlighted the negative impact of FD on the QoL, in particular patients with extensive FD involvement. In addition, the SBS of the legs and pelvis compartments demonstrated a stronger correlation with the physical health domains of QoL than the total SBS. Excellent intra- and inter-reader agreement was observed among the readers and in using bone image formats. Also, good SBS reliability when measured from WB-MRI. Further research is required to validate our findings regarding the applicability of SBS on WB-MRI in a larger cohort. Our findings offer insights into the accessibility of SBS for assessing the FD skeletal extent. This study aligns with the current international FD guidelines, emphasising the importance of using SBS to assess disease extent, and manage its complications to preserve physical health and QoL.7 0Item Restricted Systematic Review of Asthma Exacerbations Impact on Children’s Quality of Life in Low-Income Countries and Lower-Middle-Income Countries(King's College London, 2024-09-25) Alrashed, Rana; Laurence, YokoBackground: Asthma is a major cause of morbidity and disability in children, especially in low-income countries and lower-middle-income countries (LICs and LMICs). This systematic review evaluates the impact of asthma exacerbations on the quality of life (QoL) of children and adolescents in LICs and LMICs. Methods: A comprehensive literature search was conducted in major medical databases, including PubMed, Medline, Embase, Global Health, and Cochrane Library. Studies involving children and adolescents aged 0-18 years residing in LICs and LMICs were included. The review considered a range of study designs, including cross-sectional studies, randomized controlled trials, systematic reviews, and meta-analyses. The quality of the included studies was assessed using the relevant Joanna Briggs Institute (JBI) checklists. Results: The review found seven relevant studies. The cross-sectional studies showed that poorly controlled asthma and frequent exacerbations have a significant negative impact on various aspects of children's QoL, including physical functioning, emotional well-being, and social interactions. The narrative review and meta-analysis supported these findings, emphasizing the considerable burden of asthma on the overall well-being of children in low-resource settings. The randomized controlled trial provided evidence that targeted interventions, such as comprehensive asthma education and management programs, have the potential to improve the QoL of affected children. Conclusions: This systematic review emphasizes the significant negative impact of asthma exacerbations on the quality of life of children in LICs and LMICs. Factors such as socioeconomic status, access to healthcare, and environmental exposures were identified as key determinants of the QoL in this population. The findings emphasize the urgent need for interventions and policies to address the challenges faced by children with asthma in LICs and LMICs and improve their overall well-being.5 0Item Restricted Diet related quailty of life of school-age children with type 1 diabetes mellitus(University of Leeds, 2024) Alharbi, Faten Fahad; Orfila, Caroline and Holmes MelvinManaging type 1 diabetes mellitus (T1DM) is challenging: blood glucose monitoring several times a day; total carbohydrate calculation to determine and adjust insulin requirements prior to mealtimes; insulin administration, either through multiple daily injections (MDI) or a pump; and diet modification. These necessary survival measures consume inordinate amounts of time and effort in the life of a person with diabetes. Ensuring that carbohydrate intake meets essential amounts also presents a major challenge. All of these requirements can have a serious impact on the quality of life (QoL) of school-age children. However, no recent studies have evaluated the impact of T1DM on the diet-related quality of life (D-QoL) of schoolchildren in the United Kingdom (UK). An additional deficiency is the limited availability of quantitative data, which might hinder the creation and acceptance of strategies for the development of improvements in this area. The overall aim of this research was therefore to employ quantitative measures as much as possible for an investigation of the impact of T1DM on the D-QoL of school-age children from their parents’ perspective, as well as to assess the children's intake of carbohydrate-rich foods. A newly designed two-part instrument was employed for these purposes: a D-QoL survey was adapted specifically for assessing the QoL of schoolchildren with T1DM, and a semi-quantitative food frequency questionnaire (SFFQ) was designed for evaluating the dietary intake of schoolchildren both with and without T1DM. In addition, thematic analysis was applied for the analysis of open-ended questions. A total of 181 schoolchildren (n = 42) with T1DM, and (n = 139) without T1DM aged 4 to 18 years old were included in this study. D-QoL scores were calculated based on averaged responses of each participant, with higher values indicating enhanced QoL. The results of the calculations seemed to indicate that most parents scored their children’s QoL in the medium category. Pearson’s correlation coefficient was applied for testing the relationships between a child’s age, duration of diabetes, HbA1c level, D-QoL scores, and total carbohydrate intake. No significant correlations were found between factors, with the exception of the age of schoolchildren with T1DM and their total carbohydrate intake, which was confirmed through a further linear regression: their total carbohydrate intake increased by 7.225 g for each year of their age. An independent sample t-test was used for comparing the differences in the average daily intake of total carbohydrates and sugar between school-age children with and without T1DM. The results showed that the average carbohydrate intake of schoolchildren with T1DM was 17.8% lower (-17.8%) than that of those without T1DM. The thematic analysis results revealed parents’ perceptions of a lack of T1DM related knowledge on the part of school staff. As well, the analysis demonstrated a dearth of carbohydrate information and portion sizes on school menus. Barriers to participation in social events such as parties, special occasions, and school activities involving food provided by others were another D-QoL-associated issue commonly cited by the families of children with T1DM. While broad generalization of the study results is limited by pandemic-related restrictions that affected sample size, the work reported here has broken new ground and serves to illuminate avenues for future research, which could benefit from input from children with T1DM, their parents, dietitians, healthcare professionals (HCPs), school staff, and catering providers. This research can guide future studies aimed at addressing T1DM-related issues in school settings, especially with regard to developing school menus that detail readily comprehensible carbohydrate content.12 0Item Restricted Seizure Control and Developmental Outcomes After Epilepsy Surgery in Infants(University College London, 2024) Alanazi, Samar; Eltze, ChristinBackground: Managing epilepsy in infants is challenging, even with antiseizure medications, and is associated with developmental delays. This study evaluated epilepsy surgery in infants, focusing on seizure control, developmental outcomes, and quality of life. Method: We conducted a retrospective analysis of infants who underwent epilepsy surgery ≤12 months of age at Great Ormond Street Hospital between January 2007 and October 2023. Data included neuroimaging, cognitive, language, and quality of life assessments. Seizure outcomes were classified using the Engel system. Results: Thirty-eight patients (22 female) were included. The median age at onset was 6 weeks. Patients had structural abnormalities, including hemimegalencephaly (n=12, 31.6%) and focal cortical dysplasia (n=10, 26.3%). Surgery was performed at a median age of 6.5 months (IQR=4 months) and included hemispherotomy (47.4%), lesionectomy/lobectomy (31.5%), and multilobar disconnection (18.4%). Six patients (15%) required a second surgery. After a median follow-up of 4 years (IQR=6 years), 23 patients (60.5%) achieved seizure freedom, and 21 patients (55.3%) discontinued antiseizure medications. Hemiplegia was the most common motor impairment both pre- and post-surgery. Paired pre- and post surgery cognitive data were available for 21 patients, with 53% maintaining and 21% showing improvement in cognitive trajectories. Paired language data were available for 16 patients, with 34% maintaining and 13% showing improvement in language trajectories. Patients achieving seizure freedom exhibited more favourable language trajectories. Post-surgery quality of life data for 13 patients (34.2%) showed scores below normative levels. Conclusion: Epilepsy surgery significantly reduces seizures, but developmental outcomes vary, highlighting the need for ongoing evaluation.14 0Item Restricted Isolation and Its Impact: Understanding Patient–Caregiver Experiences During Isolation for Haematopoietic Stem Cell Transplantation(Queen's University Belfast, 2024-06-24) Mayan, Soumaya; Martin, DaphneBackground: Haematopoietic stem cell transplantation (HSCT) is a complex procedure requiring long-term preparation. Patients undergoing the procedure have increased risks of developing infections and life-threatening complications, so the standard practice has been to isolate them before and after the procedure. Although isolation in a separate ward helps increase the chances of successful transplantation and survival, it has an immense negative effect on patients’ psychological state. Aim: This study aimed to examine the effects of isolation on patients and their caregivers. Specifically, it focused on the psychological/emotional state, health related quality of life, and coping skills of patients and their families. Methodology: An integrative literature review methodology was used to draw the data for this study. The search was limited to articles published in English in the past decade (September 5, 2013, until present), which focused on the experiences of adult patients/caregivers in the context of HTSC isolation. A thorough literature search helped extract 19 studies which were included in the sample. This approach helped obtain qualitative and quantitative data from different locations. Results: The review showed that isolation has a severe effect on patients and caregivers, leading to stress, anxiety, and depression. It is also associated with extreme uncertainty and the loss of control, which, coupled with a plethora of unpleasant and taxing symptoms, negatively impact health related quality of life. Patients and caregivers were found to demonstrate various coping behaviours, such as communication with friends and family, spending time on hobbies, engaging in religious/ spiritual activities, and others. However, maladaptive coping was also found to be common, which points to the importance of teaching patients and families how to overcome stress. Conclusions: Given the adverse effects of isolation on patients and their families, it is extremely important to provide them with relevant psychological support and resource26 0Item Restricted The impact of a cancer diagnosis and its subsequent treatment on the HRQOL of children in Saudi Arabia in light of international practices for newly diagnosed cases A quantitative systematic review(Saudi Digital Library, 2023-12-13) Alhussain, Fayzah; Langmack, GillThe global impact of cancer on health-related quality of life (HRQOL) is significant, especially for children undergoing oncological treatment. While research on HRQOL among child cancer survivors is abundant, there is a lack of representation among those actively undergoing treatment. Furthermore, Saudi Arabian data remains less explored. Objective This systematic review aims to bridge this research gap by quantitatively evaluating the HRQOL of children in Saudi Arabia during their active cancer treatment phase. The study also juxtaposes these findings with global practices, emphasising demographic, medical and parental predictors of HRQOL. Methods A comprehensive search was conducted across prominent databases including MEDLINE, CENTRAL, EMBASE, PsycINFO, and CINAHL. The search explored studies conducted in Saudi Arabia investigating HRQOL during oncological treatment for children and adolescents, alongside studies from other countries exploring newly diagnosed cases. The JBI-Critical Appraisal Checklists were used to assess the quality of each study. The outcomes were synthesised using narrative methods. Results A systematic review of nine studies was conducted, encompassing 859 paediatric cancer patients. It was observed that all children undergoing cancer treatment experienced a decline in HRQOL. In Saudi Arabia, the psychosocial domain was particularly impacted, more so than the physical domain. The newly diagnosed phase was identified as having the most compromised HRQOL compared to the other stages of the illness. Longitudinal studies showed improvement over time. Several predictors influenced HRQOL including clinical, demographic and parental factors. Conclusion Paediatric cancer patients face profound physical, emotional and psychosocial challenges. Tailored interventions and paediatric palliative care integration are urgently needed to enhance HRQOL. This study underscores the need for more in- depth clinical research in Saudi Arabia, focusing on diverse aspects of HRQOL to optimise treatment outcomes for children with cancer.42 0Item Restricted Inequalities in Oral Health-Related Quality of Life among children in Saudi Arabia(2023-07-16) AlMajed, Omar Sami; Sabbah, Wael; AlAyadi, HayaAbstract Aim: To examine Oral Health-Related Quality of Life (OHRQoL) and their determinants among Saudi Arabian elementary school children. Method: The study's author utilized baseline data from a longitudinal randomized controlled trial conducted in Riyadh, Saudi Arabia (Alayadi et al., 2021). The study participants were elementary school students who attended public schools. A stratified cluster random sampling technique was employed to randomly select sixteen schools from a list provided by the Ministry of Education. The study enlisted individuals who were between six and twelve years of age as participants. The study focused on both primary and permanent teeth. Children with any medical issues were excluded from the study. A total of 1086 individuals were included, and both clinical evaluations and parental questionnaires were used to collect data. The criteria established by the World Health Organization (WHO, 2013) were used in order to evaluate the oral health of the children who took part in the research project. Furthermore, an adapted version of the WHO parental survey was used to gather information about the demographic and socioeconomic attributes (like age, gender, monthly income, and educational background of both parents) and behaviours of the study group. Results: The results of the study revealed significant associations between age and untreated caries with Oral Health-Related Quality of Life (OHRQoL) among children in Saudi Arabia. Older children and those with untreated caries had higher rates of experiencing suboptimal oral health outcomes. However, no statistically significant associations were found between gender, family income, parental education, oral hygiene frequency, dental visits, and OHRQoL. Conclusion: We found that Age and Untreated caries were significantly and positively associated with OHRQoL.50 0Item Restricted Evaluate The Impact Of A Community-Based Table Tennis Programme On Parkinson'S Individuals' Activity Participation.(2023) Alsaigh, Mohammad; Hamana, KatyBackground: The World Health Organization defines Parkinson's disease (PD) as a neurodegenerative disease characterized by clinical manifestations (motor deficits) and a wider number of non-motor symptoms which relate to quality of life (QOL) and social attitudes. Participation is defined by the International Classification of Functioning, Disability and Health as interaction in everyday activities and the degree to which people are involved in their communities. Community-based exercise is one approach that has been investigated to encourage involvement in PD. Aim of the study: To evaluate a supported community-based Table Tennis programme specifically developed for people with Parkinson's disease. Design: an evaluation study, quasi experimental, one group pretest-posttest. Methods: 17 participants were recruited at the beginning of the study, the majority of whom were male. The selected outcome measures Parkinson's disease Questionnaire (PDQ-8), Oxford Participation, Activities Questionnaire (OX-PAQ), Parkinson’s Disease Questionnaire Exercise (PDQ Exercise) and Starkstein’s Apathy Scale (SAS) were chosen based on the research question and goals. Results: The current statistics indicate the following: (1) (n: 11) The study participants exhibit improved individual participation following their involvement in community-based exercise programme, although there was no significant statistical variance between the pre- and post-tests (OX-PAQ, PDQ-8); (2) The PDQ-EXERCISE underwent a significant change that would have improved PwPDs' quality of life; (3) There was no significant statistical change in SAS, while the mean of the whole score declined, suggesting that there may have been some progress; (4) Post-test assessments for all outcome measurements revealed reductions in overall scores. Conclusion: the community-based table tennis programme may have positive influences on PwPD participation (n=11), according to the current finding. Thus, the current study may be useful because it might be applied to encourage a more extensive study regarding the effects of the PwPD community table tennis programme.11 0Item Restricted The Effeciveness of Combining both Exercise Training and Inspiratory Muscle Training in the Treatment of Patients with Heart Failure to Improve their Quality of Life: A Systematic Review(2023-03-20) Jaber, Amal; Tame, Jo-DeeBackground: Heart failure is a multi-organ dysfunction that affects multiple systems, including the cardiovascular, and respiratory systems, potentially becoming a major contributor to oedema, dyspnoea and exercise intolerance. Dyspnoea and exercise intolerance are associated with a poor prognosis, worsened by raising physical activity levels during regular everyday activities. Consequently, poor quality of life is reported in heart failure patients as they are less healthy or able to engage in daily activities. Exercise training alone has enhanced the quality of life for heart failure patients as has inspiratory muscle training alone. Combining exercise with inspiratory muscle training may offer additional benefits in terms of patients’ quality of life. This review aims to determine the benefits in quality of life when combining exercise and inspiratory muscle training for therapy with heart failure patients. Objectives: To determine if there is evidence that exercise and inspiratory muscle training combined enhance people with heart failure's quality of life. To identify any evidence that indicates that using exercise and inspiratory muscle training combined is more beneficial for treating people with heart failure than using either one alone, in terms of enhancing quality of life. To determine the course of future research in this field. Methods: To meet the aim and objectives, a systematic review was conducted. Randomised control trials were selected for this review. Several sources were used between September first and November 18, 2022, including EMBASE, CINAHL, Web of Science, Scopus, Trip PRO, ASSIA and Dimensions.ai. Each randomised control trial’s methodological quality was evaluated by two independent reviewers. Data was synthesised using a narrative synthesis because of heterogeneity of the data. Results: There were found to be five randomised control trials of moderate to high quality with a total of 402 participants. The combination of exercise and inspiratory muscle training was shown to be statistically significant regarding quality of life outcomes pre-post intervention in all five trials (P < 0.05). There were statistically significant findings regarding quality of life outcomes pre-post inspiratory muscle training alone but not for exercise alone. Conclusion: The use of exercise training and inspiratory muscle training together to improve quality of life in people with heart failure is consistently supported by the present data, according to this systematic review. This combination may improve the quality of life in heart failure patients more than exercise alone, but to an extent that is similar to inspiratory muscle training alone. Further research is required to investigate the effects of specific types of exercise and inspiratory muscle training on quality of life outcomes in patients with heart failure, in addition to comparing the results of the combination intervention with exercise or inspiratory muscle training alone. Keywords: Inspiratory muscle training, exercise, quality of life, heart failure.27 0