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The development and testing of an oral health-related quality of life measure for children/adolescents with Down syndrome (OH-QOLADS)

Aljameel, AHM; (2016) The development and testing of an oral health-related quality of life measure for children/adolescents with Down syndrome (OH-QOLADS). Doctoral thesis , UCL (University College London). Green open access

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Abstract

Background: Down Syndrome is the most common genetic cause of intellectual disabilities. In addition, it is the most common chromosomal anomaly among liveborn infants. Individuals with this condition exhibit special oro-facial characteristics that increase their risk of oral conditions. The impact of oro-facial conditions on individuals may be related closely to their oral health (such as pain, discomfort, and in severe cases tooth loss), but can also extend to broader effects on personal relationships, emotional status and Quality of Life (QoL). However, there is very little research on the way oral health affects QoL of people with Down Syndrome. Aim: The aim of this study was to develop and test an Oral Health-Related Quality of Life (OHRQoL) instrument among children/adolescents with Down Syndrome. Methods: The study entailed two phases. In Phase One and in order to develop the instrument, interviews with 20 mothers of children with Down Syndrome were conducted to explore their perceptions of how oral health of their children impacted their lives (i.e. socially, emotionally) and the life of a family as a whole. Analysis of these interviews along with the literature review informed the formulation of the OHRQoL measure. In Phase Two, the developed measure was validated and tested among 97 mothers and their children with Down Syndrome. Clinical examination of oral health status of group of children/adolescents with Down Syndrome whose mothers answered the questionnaire was also conducted for the questionnaire validation purposes. Results: Analysis of mothers’ interviews helped in identifying the dimensions of impacts of child’s oral health on different aspects of the child and family’s QoL that resulted in a total of 20 items on child’s OHRQoL, and 10 items on family’s OHRQoL. Since the instrument is on its developmental stage and in order to capture any impact occurrence, each identified item was collected at two time frames: Everhappened and happened Last-year. Results of phase-two showed that 82% of children had experienced at least one oral impact on their lives, and 77% of mothers reported at least one impact of their children’s oral health on the family’s QoL. Results also showed that the developed measure has good psychometric properties; Cronbach’s Alpha of the item-total correlation of the child’s OHRQoL was 0.909 for ‘Ever-happened’, and 0.902 for ‘Last-year’. And for the family’s OHRQoL, the Cronbach’s Alpha ranged from 0.828 ‘Ever-happened’ to 0.807 for impacts experienced ‘Last-year’. For construct validity, findings revealed significant correlations between subjective health indicators and child’s OHRQoL and family’s QoL. The new measure also showed its ability to discriminate between different clinical groups. Conclusion: This is the first study to develop and validate an OHRQoL measure for use among children/adolescents with Down Syndrome. Oral health of children/adolescents with Down Syndrome had negative impacts on different aspects of their lives and that on their family. Further studies are needed to further validate this instrument to other cultures/populations, and explore the intensity of these impacts and how they might affect the rehabilitation process of the existing disability

Type: Thesis (Doctoral)
Title: The development and testing of an oral health-related quality of life measure for children/adolescents with Down syndrome (OH-QOLADS)
Event: UCL
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Third party copyright material has been removed from ethesis.
UCL classification: 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 Pop Health Sciences > Institute of Epidemiology and Health
URI: http://discovery.ucl.ac.uk/id/eprint/1473943
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