Paediatrics (RCH) - Theses
Permanent URI for this collection
Search Results
1 - 5 of 5
-
ItemAssociations between executive function, adaptive behaviour, participation and self-reported quality of life in adolescents with autism spectrum disorder without intellectual disability( 2018)Background ASD is a neurodevelopmental condition that affects an individual’s ability to communicate and interact with others. There has been an increase in the prevalence of ASD diagnosis, with the most considerable increase in adolescents who are intellectually able. These adolescents have difficulties with adaptive behaviour and struggle to participate in society, even if their intelligence is in the average or superior range. A better understanding of the relationship between impairments associated with ASD such as social impairments, executive function, adaptive behaviour, and participation and quality of life (QoL) is needed in intellectually able adolescents with autism. Aims Using the International Classification of Functioning, Disability and Health (ICF), with subjective functioning added, as a framework, this thesis aimed to study the association between 1) executive function (EF) and adaptive behaviour, over and above the contribution to adaptive behaviour of social impairment and intelligence; 2) EF and participation and the mediating role of adaptive behaviour in their association; 3) participation and self-reported QoL, over and above the contribution to self-reported QoL of social impairment and symptoms of anxiety and depression, in adolescents with ASD and without ID. Methods To address these aims, a cross-sectional study of 39 adolescents with ASD, aged from 10 to 16 years and 11 months (M = 13 years 4 months; SD = 3 months) and with Full Scale Intelligence Quotient (FSIQ) ranging between 78 and 144 (M = 107.97; SD = 18.25) was conducted. Adolescents completed a battery of tests to assess the ICF domains of Health Condition (social impairment, anxiety and depressive symptoms), Body Functions/impairments (EF, such as cognitive flexibility, inhibition, generativity, planning), Activity (adaptive behaviour), Participation (participation in extra-curricular activities) as well as the domain of subjective functioning (self-reported QoL). The domains of Environmental Factors (family social advantage) and Personal Factors (sex, age and intelligence) were also considered for each participant. Measures were chosen based on their use in clinical practice and research with young people with ASD, with the exception of participation, as there was no clear understanding of how to measure this domain for young people with ASD. To identify how participation has been measured in young people with ASD a systematic review of the literature was performed, with consideration of the measurement properties of the tools identified. As published, nine studies out of the 2539 screened investigated the measurement properties of the tool to assess participation in young people with ASD. These nine studies included seven tests, namely Adolescent and Young Adult Activity Card Sort, the Children’s Assessment of Participation and Enjoyment/Preference for Activities of Children (CAPE/PAC); the Experience Sampling Method; the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) and the School Function Assessment. The tests’ measurement properties were investigated in studies with high risk of bias and therefore, the quality of the evidence for these tools is limited. The PEDI-CAT demonstrated adequate measurement properties but lacked the assessment of the subjective dimension of participation. For this reason, the CAPE was chosen in this study. Preliminary analysis of the data from the cross-sectional study comprised a description of the sample, univariate analysis of the association between independent and dependent variables by hypothesis, and explorative univariate analysis of the association between covariates and dependent variables. To address the three aims of this thesis, three hierarchical regressions were performed with covariates entered in the first steps, and the independent variables by hypothesis entered last. Results The descriptive statistics fit well with the conceptualisation of autism as a spectrum condition with scores on measures of the constructs mentioned earlier varying between participants. Hierarchical regression relative to aim 1 showed that inhibition was positively associated with adaptive behaviour, above and beyond social abilities (reversed social impairments) and intelligence. Inhibition and social abilities were positively associated with adaptive behaviour and explained 50% of its variance. There was no association between cognitive flexibility, generativity, planning and adaptive behaviour over and above the contribution of social abilities and intelligence. Hierarchical regression relative to aim 2 showed that there was no association between EF abilities and participation. Furthermore, there was no association between adaptive behaviour and participation and, as such, adaptive behaviour was not found to be a mediator in the association between EF and participation. Hierarchical regression relative to aim 3 showed that there was no association between participation and self-reported QoL, above and beyond reversed anxiety and depressive symptoms. Reversed depressive symptoms were positively associated with self-reported QoL and explained 49% of the variance in self-reported QoL. Discussion Assessment of EF abilities, together with the assessment of social abilities, should become routine in the care of adolescents with ASD who have difficulties with adaptive behaviour. However, there is a need to investigate other factors in addition to EF abilities and adaptive behaviour which may influence participation in extra-curricular activities as impairments in the former are not associated with those in participation. Treating comorbid mental health symptoms of young people with ASD, in particular depressive symptoms, may result in an improvement of these young people’s self-reported QoL.
-
ItemSubjective and objective sleep outcomes in young adults who sustained traumatic brain injury in childhood: relationship with fatigue, depression, and quality of life( 2019)Background: Traumatic Brain Injury (TBI) is highly prevalent in children and often associated with impairments in several functional domains including sleep. Sleep-wake disturbances (SWD) are common in children with TBI and are associated with functional impairments in several domains. While some children may recover from SWD in the short-term postinjury, others may experience persistent symptoms, until late adolescence. Although not explored in children with TBI, studies involving adults with TBI have associated SWD with fatigue and depression symptoms, with these symptoms often co-occurring and impacting quality of life (QoL). In addition, no study has investigated sleep-wake outcomes in adulthood following childhood TBI. This thesis is aimed at evaluating outcomes of subjective and objective sleep, fatigue, depression, and QoL, and the relationship between these outcomes in a sample of young adults with a history of childhood TBI. Also examined were the relationships between sleep outcomes and injury-related factors, socio-demographic factors, mental health, lifestyle factors, and medication use. Methods: The study used a longitudinal prospective design with a cross-sectional assessment of sleep outcomes. Participants included 54 young adults with childhood TBI (mild, moderate, and severe) and 13 typically developing control (TDC) participants matched to the TBI group on age, sex, and socioeconomic status at the time of recruitment. SWD were assessed subjectively with questionnaires and objectively using 14 days actigraphy recording, and all other evaluations were subjective. Results: At 20 years postinjury, subjective sleep outcomes were generally favorable in young adults who sustained TBI in childhood, although moderate TBI was associated with poorer subjective sleep quality compared to severe TBI. With the exception of objective sleep duration, no other objective sleep parameter was significantly associated with history of childhood TBI or TBI severity. Fatigue, depression, and QoL outcomes were also similar between study groups. Nonetheless, poor subjective sleep quality was significantly associated with evening chronotype, increased use of tobacco and psychotropic medications, greater symptoms of anxiety and pain, as well as increased symptoms of fatigue and depression, and reduced health status in the TBI group. Conclusions: Evidence from this first evaluation of SWD in young adulthood following childhood TBI revealed favorable outcomes in SWD, fatigue, depression, and QoL at this developmental stage postinjury, although a subgroup of this TBI sample presented with problems in these domains. Poor subjective sleep quality in the TBI group was associated with less severe TBI, mental health and physiological factors, behavioural factors, and QoL. These findings provide preliminary insight into these outcomes at this stage postinjury and highlight the important influence of sleep in these related domains, particularly, fatigue, depression, and QoL. Clinicians are encouraged to routinely assess sleep and these related outcomes in young adults who have sustained TBI in childhood to identify those at risk of poor outcomes and improve very-long-term outcomes in this TBI population.
-
ItemQuality of life assessment in children requiring oral anticoagulant therapy( 2011)The absence of robust evidence regarding the management and clinical outcomes of anticoagulant therapy in children challenges interpretation of the risks and benefits of long-term anticoagulation therapy for children. Decisions about treatment increase in complexity in light of the potential burden of treatment on children and families. Quality of life (QoL) is a recognised and validated measure of the burden of treatments for children; yet, there is a lack of data about the impact of long-term warfarin therapy on QoL for children and families. This thesis describes the first study to evaluate the impact of a home international normalised ratio (INR) self-testing (home ST) program on the QoL of children and their families. The aim of the study was to determine if participation in a home ST program improves QoL for children requiring long-term warfarin therapy and their families. Parents of children requiring long-term warfarin therapy and children aged eight to 18 years participated in the QoL study. Three validated QoL questionnaires, the Pediatric Quality of life Inventory Generic Core Scale™, the Pediatric Quality of Life Family Impact Module™ and the KIDCLOT Pediatric Anticoagulation Quality of Life © inventory were employed to measure QoL. Questionnaires were completed before commencing home ST and six to 12 months later. Participants answered four open-ended questions when completing the questionnaires for the second time. Fifty-six families entered the home ST program during the study period. The children were aged between 2 and 17 years. Fifty-five parents and 35 children completed QoL questionnaires. Results of INRs tested at home were collected. The percentage of time the children’s INRs were in their target therapeutic range was 71.3%, which is comparable to many published paediatric studies of home ST. Parents reported statistically significant improvements in QoL for themselves, their family and their child, across all questionnaires following the commencement of home ST (mean difference in score p ≤ 0.003 on all questionnaires). The children’s scores of their own QoL also improved; however, this improvement was not significant. Parents’ report of their children’s QoL was significantly lower than the children’s report of QoL on all questionnaires at both time points. As well as being the first validated baseline QoL data in an Australian population of children requiring oral anticoagulant therapy, this study reports QoL for the largest cohort of children requiring warfarin therapy worldwide. The employment of both quantitative and qualitative methods to assess QoL enhanced understanding about the impact of home ST on QoL. This study has demonstrated that home ST in a population of children requiring long-term warfarin therapy is safe, efficacious and improves the QoL of children and parents. This study confirms home ST successfully reduced the burden of therapy and maintained excellent clinical outcomes. The results of this study not only identify the impact of warfarin therapy upon QoL in children, but offer an alternative evaluation strategy to sensitively measure the impact of interventions in this population. Accurate QoL assessments ensure children’s and families’ values are integrated with the current evidence for best clinical practice.
-
ItemThe quality of life of young women with a menstrual problem and families attending a hospital-based gynaecological clinic in Melbourne, Australia( 2010)BACKGROUND: Menstrual disorders are very common among young women and have been shown to have negative effect on physical and psychosocial health. Despite high prevalence of menstrual dysfunction in young women, only small percentage seeks medical help. Very few papers have examined health related quality of life (HRQL) in younger population with menstrual problem. AIMS: The aim of the study was to assess young women’s and their parents’ perception on the impact of menstrual problem on the young women’s quality of life and identified factors that have impact on it. It was also aimed to describe the quality of life of parents of young women with menstrual problems and factors influencing their quality of life (QoL). METHOD: This was a descriptive, cross-sectional study conducted in Royal Children’s Hospital, Melbourne between 1st October 2008 till 30th June 2010. Research tools used for young women were PedsQL 4.0 generic module (Teen-report) and Parent Bonding Instrument whereas tools for parents include PedsQL 4.0 generic module (Parent-report), SF12v2 and Kessler Psychological Distress Scale. RESULTS: A hundred and eighty four young women and parents completed self-administered questionnaires. The most common menstrual problems seen in our gynaecological clinic were dysmenorrhoea (38.6%), followed by heavy menstrual bleeding (33.6%), oligomenorrhoea (19.6%) and amenorrhoea (8.2%). The mean overall score was 70.48+16.44 with 42.5% having a score below one standard deviation from the norms. Young women with dysmenorrhoea had the poorest score in physical function whereas those with amenorrhoea had the lowest score in psychosocial function. Higher body mass index, smoking, alcohol drinking, sexual activity, parental anxiety and parental overprotection were associated with poorerscore. Overall, parents rated lower QoL scores than young women themselves in all four domains (physical, emotional, social and school). Parent-child agreements were moderate to good with best agreement in school functioning. Parents’ of young women with menstrual problems reported lower QoL scores than the norm in all domains with worse scores in ‘role emotional’ and ‘mental health’ domain. Parental anxiety and medical illnesses were associated with poorer parental QoL. CONCLUSION: Although menstrual problems are not life threatening, they can pose a significant impact not only on the quality of life of these young women but also their parents. Identification of these impacts might lead to recognition of potential services or education to improve this. Understanding the characteristics that predict QoL may help clinician identify patients who are risk for poor QoL.
-
ItemA profile of young adults aged 20-30 years with cerebral palsy in Victoria: health, function, pain, quality of life, social participation, and service utilisation( 2009)INTRODUCTION AND BACKGROUND: Cerebral palsy (CP) is the most common physical disability in childhood with a prevalence of approximately 2-2.5 per 100 live births. Improvements in paediatric care have increased the survival of individuals with CP. Overall 90% are expected to grow into adulthood yet little is known about the outcomes of young adults with this condition. In order to provide holistic services for this population, an understanding of various aspects of their lives is required. AIMS: To examine the outcome of young adults with CP from the perspective of perceived health status, functional ability, pain, quality of life (QOL), social participation, and healthcare service utilizations, compared with their able-bodied peers. To explore the determinants that contribute to the variation of these outcomes in the context of impairments, activity, participation, and personal and environmental factors. METHODS: This is a population based cross sectional study of young adults with CP based on the WHO International Classification of Functioning, Disability and Health (ICF) model. A cohort of 335 young adults with cerebral palsy born in Victoria, aged 20 to 30 years, was recruited from the Victorian Cerebral Palsy Register. Data of typically developed peers selected from the Household, Income and Labour Dynamics in Australia Survey 2004 were used for comparison for the outcomes of perceived health, pain, and social participation. Data from a population-based sample of 751 young adults in U.S. were used for comparative analyses of QOL. Participants were asked to complete a multidimensional questionnaire by self report, or proxy report by parents or carers for those with intellectual or severe physical impairments. The questionnaire was comprised of the Quality of Life Instrument for Young Adults, the Short Form-36 Health Survey Questionnaire version 2, the Gross Motor Function Classification System, the Barthel Index, and a demographic section. RESULTS: A total of 335 young adults with CP participated; 207 (62%) were able to self report and 128 (38%) were proxy reported. Compared with their able-bodied peers, self reported physical health in this population was lower but mental health was similar. Gross motor function, independence in self care, and limb distribution together explained 60% of the variance in the physical health data. They experienced more pain, impaired function, and reduced social participation, but despite this, their contact with medical and allied health professionals was low. Pain was linked with limb distribution and had a negative impact on functional ability, employment participation and QOL. Impaired functional ability, intellectual disability, and communication impairments had major effects in reducing social participation. Self reported QOL was similar to their peers in social relationship and environmental context domains, but was lower in the domains of physical health, psychological well-being, and role function. The impact of CP on the individuals’ QOL was on physical and functional aspects, and sometimes on social relationships, but not on psychological well-being. CONCLUSION: This study has demonstrated that greater efforts are needed to improve the health, function, QOL, and social participation in individuals with CP, accompanied by more research to monitor the effectiveness of interventions for them.