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Lower Functioning (lower + functioning)
Selected AbstractsHealth-related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reportsINTERNATIONAL JOURNAL OF CANCER, Issue 4 2003Elizabeth B. Waters Abstract The improving prognosis for children with cancer refocusses attention to long-term outcomes with an emphasis on quality of life. Few studies have examined relationships and differences in reported results between the parent, child and clinician. We examined parent-proxy and clinician-reported functional status and health-related quality of life for children and adolescents with acute lymphoblastic leukemia (ALL). Children and adolescents, 5,18 years, in the maintenance phase of treatment for ALL attending the Haematology/Oncology outpatient clinic at the Royal Children's Hospital, Melbourne, were eligible. Measures included: 1) parent-reported functional health and well-being (Child Health Questionnaire [CHQ]); 2) parent-reported condition specific quality of life (Pediatric Cancer Quality of Life inventory [PCQL]); 3) clinician ratings of physical and psychosocial health; and 4) clinical indicators. Insufficient numbers of older patients prohibited collection of adolescent self-reports. We had a 94% response and 31 participants. Mean time since diagnosis: 1.5 (SD 0.4) years. Parents reported significantly lower functioning and well-being than population norms for all CHQ scales, whereas cancer-specific quality of life was comparable to PCQL norms. Clinician reports of the child's global physical and psychosocial health were moderately associated with each other (rs = 0.56, p < 0.001), and with the parent-reported physical (rs = 0.47, p < 0.01) and psychosocial (rs = 0.56, p < 0.001) CHQ summary scores. Clinician reports of the child's psychosocial health were not associated with any clinical indicators reported regularly. The results demonstrate that the social, physical and emotional health and well-being of children with ALL is significantly poorer than the health of their community-based peers. Routinely collected indicators of clinical progress conceal the psychosocial burden of ALL. Data on health, well-being and quality of life can easily be incorporated into clinical care. © 2002 Wiley-Liss, Inc. [source] Agreement between dementia patient report and proxy reports using the Nottingham Health ProfileINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 11 2004F. Boyer Abstract Objective The aim of the study was to examine the agreement between patient reports and their proxy reports (family and care provider proxies) on Health Status in a sample of patients with dementia. Method Ninety-nine patients with mild to moderate dementia and proxies completed the 38-item Nottingham Health Profile (NHP) questionnaire. Results Completion rates for the different NHP dimensions ranged from 78 to 90% for the dementia subjects. Inter-rater agreement between different proxies and subject was from moderate to good for physical assessment (ICCs from 0.54 to 0.78 for physical mobility scales). Patient/family proxy concordance was moderate to good for five out of six dimensions (physical mobility, social isolation, pain, energy, sleep) and poor for emotional reaction. Family proxies systematically reported lower functioning than did patients in the four subscales assessing: physical mobility (p,<,0.0001), energy (p,<,0.005), social isolation (p,<,0.01) and sleep (p,<,0.03). Care provider proxies only estimated physical mobility as lower (p,<,0.0001). Conclusion Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient. Copyright © 2004 John Wiley & Sons, Ltd. [source] A longitudinal evaluation of two-year outcome in a community-based mental health service using graphical chain modelsINTERNATIONAL JOURNAL OF METHODS IN PSYCHIATRIC RESEARCH, Issue 1 2004The South-Verona Outcome Project Abstract The 2-year outcome of 178 patients attending a community-based mental health service was assessed from a multidimensional perspective. The study investigated: (1) the effect of disease-related characteristics (such as diagnosis and illness duration) and of a series of outcome variables measured at baseline (global functioning, psychopathology, social disability, quality of life and satisfaction with services) on total costs of care over 2 years; and (2) the effect of costs of care and outcome variables measured at baseline on the corresponding outcome variables at 2 years. To gain insight into the multivariate longitudinal dependencies among variables, we used graphical Gaussian chain models, a new multivariate method that analyses the relationship between continuous variables taking into account the effect of antecedent and intervening variables, to reveal not only direct but also indirect correlations. Outcome variables showed the tendency to segregate, both at baseline and follow-up, into two distinct groups: a clinician-rated dimension (given by global functioning, social disability and psychopathology) and a patient-rated dimension (given by service satisfaction and subjective quality of life). Higher costs at 2 years were predicted by higher psychopathology at baseline, diagnosis of psychosis and longer duration of illness. Baseline values for each variable were the main predictors of the corresponding values at two years. Improvement in satisfaction with life at follow-up was experienced in those subjects with a lower functioning at baseline. This study throws some light on the complex relationships between clinical, social and economic variables affecting the medium-term outcome of mental health care. Copyright © 2004 Whurr Publishers Ltd. [source] Simultaneous analysis of the behavioural phenotype, physical factors, and parenting stress in people with Cornelia de Lange syndromeJOURNAL OF INTELLECTUAL DISABILITY RESEARCH, Issue 7 2009J. Wulffaert Abstract Background Studies into the phenotype of rare genetic syndromes largely rely on bivariate analysis. The aim of this study was to describe the phenotype of Cornelia de Lange syndrome (CdLS) in depth by examining a large number of variables with varying measurement levels. Virtually the only suitable multivariate technique for this is categorical principal component analysis. The characteristics of the CdLS phenotype measured were also analysed in relation to parenting stress. Method Data for 37 children and adults with CdLS were collected. The type of gene mutation and relevant medical characteristics were measured. Information on adaptive functioning, behavioural problems, the presence of the autistic disorder and parenting stress were obtained through questionnaires and semi-structured interviews with the parents. Chronological age and gender were also included in the analysis. Results All characteristics measured, except gender, were highly interrelated and there was much variability in the CdLS phenotype. Parents perceived more stress when their children were older, were lower functioning, had more behavioural problems, and if the autistic disorder was present. A new perspective was acquired on the relation between the gene mutation type and medical and behavioural characteristics. In contrast with earlier research the severity of medical characteristics did not appear a strong prognostic factor for the level of development. Conclusion Categorical principal component analysis proved particularly valuable for the description of this small group of participants given the large number of variables with different measurement levels. The success of the technique in the present study suggests that a similar approach to the characterisation of other rare genetic syndromes could prove extremely valuable. Given the high variability and interrelatedness of characteristics in CdLS persons, parents should be informed about this differentiated perspective. [source] Child Behavior Checklist Juvenile Bipolar Disorder (CBCL-JBD) and CBCL Posttraumatic Stress Problems (CBCL-PTSP) scales are measures of a single dysregulatory syndromeTHE JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY AND ALLIED DISCIPLINES, Issue 10 2009Lynsay Ayer Background:, The Child Behavior Checklist Juvenile Bipolar Disorder (CBCL-JBD) profile and Posttraumatic Stress Problems (CBCL-PTSP) scale have been used to assess juvenile bipolar disorder (JBD) and posttraumatic stress disorder (PTSD), respectively. However, their validity is questionable according to previous research. Both measures are associated with severe psychopathology often encompassing multiple DSM-IV diagnoses. Further, children who score highly on one of these scales often have elevated scores on the other, independent of PTSD or JBD diagnoses. We hypothesized that the two scales may be indicators of a single syndrome related to dysregulated mood, attention, and behavior. We aimed to describe and identify the overlap between the CBCL-JBD profile and CBCL-PTSP scales. Method:, Two thousand and twenty-nine (2029) children from a nationally representative sample (1073 boys, 956 girls; mean age = 11.98; age range = 6,18) were rated on emotional and behavior problems by their parents using the CBCL. Comparative model testing via structural equation modeling was conducted to determine whether the CBCL-JBD profile and CBCL-PTSP scale are best described as measuring separate versus unitary constructs. Associations with suicidality and competency scores were also examined. Results:, The CBCL-JBD and CBCL-PTSP demonstrated a high degree of overlap (r = .89) at the latent variable level. The best fitting, most parsimonious model was one in which the CBCL-JBD and CBCL-PTSP items identified a single latent construct, which was associated with higher parental endorsement of child suicidal behavior, and lower functioning. Conclusions:, The CBCL-JBD profile and CBCL-PTSP scale overlap to a remarkable degree, and may be best described as measures of a single syndrome. This syndrome appears to be related to severe psychopathology, but may not conform to traditional DSM-IV classification. These results contribute to the ongoing debate about the utility of the CBCL-JBD and CBCL-PTSP profiles, and offer promising methods of empirically based measurement of disordered self-regulation in youth. [source] | ||||||||||