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Towards developing an outpatient assessment tool of LSL that incorporates clinical evaluation and the impact on patient and family in terms of Health Related Quality of Life

May, L; (2016) Towards developing an outpatient assessment tool of LSL that incorporates clinical evaluation and the impact on patient and family in terms of Health Related Quality of Life. Doctoral thesis , UCL (University College London). Green open access

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Abstract

Introduction: There is wide variation in how lumbosacral lipoma (LSL) is assessed in the clinical setting; furthermore, there is little data regarding the impact that LSL has on the Health Related Quality of Life (HRQL) of children. Secondly, there is limited information regarding the relationship between LSL type, and clinical and HRQL outcomes. This thesis aims to: 1. Develop an assessment tool for use in the out-patient setting, which would provide a standardised method by which to objectively assess outcomes of interventions including surgery, and allow comparison and audit across different neurosurgical units. / 2. Identify the key HRQL factors that affect the child and parent. / 3. Identify if there is a relationship between LSL type, and clinical and HRQL outcomes. / Method: 1. A systematic review was undertaken to identify the assessment criteria in children with LSL. / 2. A cross sectional analysis of a cohort of 54 children with LSL aged between 5 and 18 years of age was performed. / 3. The results from points 1 and 2 were combined to develop an objective assessment tool. / 4. HRQL was assessed using a number of generic questionnaires and by asking the children and parents directly, what was important to them in terms of their disease. The results were combined to ensure all aspects of the impact of LSL were identified, including the effect of the disease on the well-being of parents. / 5. The relationship between LSL type, and clinical and HRQL outcomes was systematically analysed in a cohort of 54 children, to examine the association between these symptoms and the type of LSL. / Results: 1. It was evident from the systematic review that there was no consistency in the literature regarding assessment methods for this group of children. Based on this review and the prospective study, an objective tool was developed that can be easily useable in the clinical setting. / 2. The clinical issues most significantly associated with HRQL were mobility, pain and urology. Urology issues were not identified by self-report from the questionnaire results, but from verbal self-reporting. / 3. The transitional group have a higher risk of clinical abnormalities and deterioration and the dorsal group the least, in the majority of clinical outcomes. There was a trend for children with transitional lipomas to have a lower HRQL and the dorsal group to have the highest HRQL, on the majority of measures. / Discussion: In addition to a standardised clinical assessment tool, an appropriate HRQL questionnaire and a standardised pain assessment tool will be utilised to provide a holistic assessment of children with LSL. The study results suggest children could be risk stratified according to LSL type, with more intensive initial investigations and potential interventions in children with transitional lipomas.

Type: Thesis (Doctoral)
Title: Towards developing an outpatient assessment tool of LSL that incorporates clinical evaluation and the impact on patient and family in terms of Health Related Quality of Life
Event: UCL (University College London)
Open access status: An open access version is available from UCL Discovery
Language: English
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Neurosciences Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1532786
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