Does choice influence quality of life for people with mild intellectual disabilities?

Consumer choice is a key concept in developmental disability intervention, but relatively little quantitative research has focused on the relationship between choice and quality of life. This study used data from Washington state's Division of Developmental Disabilities 2002 National Core Indicators study (Human Services Research Institute, 2001a, 2001b) to examine the relationship between choice and 3 quality-of-life indicators: community inclusion, rights, and opportunities for relationships. Consumers (N = 224) with mild intellectual disabilities participated in the study. Structural equation modeling was used to assess the influence of type of living arrangement and choice on quality of life. Consumers who lived in the community and made more choices had higher scores on quality-of-life indicators. The findings have implications for disability policy, practice, and future research.     

Measuring quality of life in people with intellectual and multiple disabilities: Validation of the San Martín scale

Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M = 7.78; SD = 12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbach's alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed.     

Pediatric neurosurgery in Europe —is it feasible to have evolution and education operate in synchrony?

Conclusion Almost all of the above has been stated in previous communications [3, 4, 6–8], but with regard to the current evolution in the European Community, it appears extremely important to make clear, emphasize, and repeat these issues again and again. In North America, the question has been raised whether a fellowship should be instituted for this subspeciality. In his paper, R. M. Scott discussed a 2-year fellowship, with 1 year of clinical experience, 3 months of pediatric neurology and 9 months in other subspecialities or research [9]. As a conclusion, he asked the question, Where will these individuals practice?Specialization is progress. This can be deduced from many examples, in the development of medicine, for example, in surgery developed by pioneers initially dealing with every thinkable surgical procedure. And, at present no one would seriously expect a cardiac surgeon to deal with surgical problems of the urinary tract. Pediatric neurosurgery is to be considered nothing else but genuine neurosurgery. The difference lies in the disease entities with malformations being treated in newborns and infants, on the one hand, and the special requirements of a very young individual on the other. The answer to this question is yes. As far as can be foreseen, pediatric neurosurgery could remain in very close relationship to the mother speciality of general neurosurgery, but should always be practiced in an environment compatible with the needs of a pediatric population by personnel with neurosurgical and pediatric expertise. Considerations and efforts must not be governed by selfish intentions, serving the purpose of self-promotion, but aimed exclusively at the benefit of our children. This aim will be best achieved by promotion of and education in pediatric neurosurgery and simultaneously.     

Is quality of life associated with cognitive impairment in schizophrenia?

BACKGROUND: The subjectively assessed quality of life of schizophrenia patients is mostly lower than healthy subjects, and cognitive impairment is an integral feature of schizophrenia. The aims of the present study were to compare the quality of life and neurocognitive functioning between the patients with schizophrenia and the healthy subjects, and to examine the relationships between quality of life and neurocognitive functions among the patients with schizophrenia. METHODS: Thirty-eight patients with schizophrenia (15 women and 23 men) and 31 healthy individuals (18 women and 13 men) were included in the study. All participants were administered World Health Organization Quality of Life-Brief Form (WHOQOL-BREF) to assess their quality of life, and Digit Span Test (DST) and Controlled Oral Word Association Test (COWAT) for cognitive functions. RESULTS: The patients with schizophrenia demonstrated lower scores in physical (F=25.6, p=0.0001), psychological (F=15.85, p=0.0001) and social (F=37.7, p=0.0001) domains compared to control group. The patients with schizophrenia showed significantly lower scores on COWAT compared to healthy subjects (F=4.22, p=0.04). The social domain scores of WHOQOL correlated to DST total scores (r=0.45, p=0.007), DST forwards scores (r=0.54, p=0.001) and COWAT total scores (r=0.40, p=0.04) in patients with schizophrenia but not in the control group. The patients with lower level of cognitive functioning had lower scores on social domain of WHOQOL-BREF (z=-2.01, p=0.04). CONCLUSION: Our results confirm that the cognitive deficits in executive function and working memory appear to have direct impact on the patients' perceived quality of life especially in social domain which can either be a cause or a consequence of social isolation of patients with schizophrenia.     

What are the determinants of quality of life in people with cervical dystonia?

BACKGROUND: Little is known about the quality of life in patients with cervical dystonia, although pain and depression are relatively common. OBJECTIVE: To test the hypothesis that an individual's ability to cope with the disease will modify the association of intrinsic, extrinsic, and disease related factors with quality of life. METHODS: Patients with cervical dystonia diagnosed by a movement disorder specialist were recruited from seven European countries. Data on quality of life (SF-36), measures of coping, and intrinsic, extrinsic, and disease related factors were collected by a self completed postal questionnaire. RESULTS: 289 patients (101 men and 188 women), mean age 55 years, completed the questionnaire. Both physical and mental quality of life scores were predicted by self esteem and self deprecation, educational level, employment status, social support, response to botulinum toxin, disease severity, social participation, stigma, acceptance of illness, anxiety, and depression. In multivariable analyses, the strongest predictors were anxiety and depression. Severe depression was associated with a 19.1 point decrement in the physical summary score (95% confidence interval, -31.7 to -6.6; p = 0.003); however, disease duration and severity remained predictors. CONCLUSIONS: Care for patients with cervical dystonia must not only focus on reducing the severity of the dystonia but also on the psychological wellbeing of the patient. Interventions aimed at treating depression or anxiety, especially of a cognitive nature, may have a large impact on improving quality of life.     

Is it possible to have a medical definition of family crisis?

In our contemporary society, the traditional multi-generational family has to adapt and to organize itself around a smaller nucleus: "The nuclear family". Nowadays, the management of the crises which accompany significant Life Events (such as birth, marriage, retirement, death...) within this new family-system, is refrained by the lack of "relays" which were previously provided by the "enlarged family". In the absence of available relatives (that is, grandparents, cousins, etc...), it is now the Medical System which is addressed with the demand for help. Using worthy contributions of the systemic theories, the authors analyze the ambiguity of such a request and the paradox underlying it, namely, to take care of a "normal" family crisis. They emphasize two major dangers consisting of the "designation" of an identified patient and the risk of "phagocytosis" of the therapeutic system by the family system.     

Is it possible to assess attachment in children between three and six years using a questionnaire?

So far the measurement of attachment of three to six year old children is only possible using time consuming behaviour observation or semiprojective play procedures. The aim of this work was to develop a more easily manageable questionnaire for practitioners to assess attachment in kindergarten children and to validate it by already existing more time-consuming attachment measures. Kindergarten entry was chosen as a natural stress inducing and thus attachment behaviour provoking situation using the professional caregivers in kindergarten as observers. To validate the questionnaire a sample of 118 kindergarten children were recruited. Cluster analysis revealed three groups comparable to secure, avoidant and ambivalent attachment classifications but failed to identify a disorganized attachment group. Comparisons with other attachment measures (reunion in kindergarten, the Strange Situation for Preschool Children and the Attachment Story Completion Task) revealed only partially significant concordances. With regard to additionally assessed domains of social-emotional and cognitive development the expected coherences where found for behaviour problems, cognitive development and problems during kindergarten entry but not for self concept. Over all it was not possible to assess attachment using the questionnaire. Explanations are discussed and the results are compared to other research findings.     

Telephone assessment of functioning and well-being following stroke: Is it feasible?

Stroke can affect the physical, emotional, and social aspects of patients' lives. The purpose of this study was to assess the feasibility and psychometric properties of a telephone-administered version of the Health Utilities Index Mark 2 and 3 (HUI2/3). Subjects included patients who had had an ischemic stroke within the prior 12 months and their unpaid caregivers (n = 76 pairs) and an additional 33 unpaid caregivers of patients who were generally aphasic or severely affected. Complete response rates, test-retest reliability, and convergent, divergent, and known-groups validity were determined. For patient-caregiver pairs, 27% had no complete Health Utilities Index Mark 2 (HUI2) responses (i.e., had missing responses for at least 1 item of each assessment), 51% had partial responses (i.e., had complete responses for at least 1, but not all of the assessments), and 22% had complete responses. For the Health Utilities Mark 3 (HUI3), the percentages were 19%, 52%, and 29%. Test-retest reliability for patients intraclass correlation coefficient (ICC = 0.76 for HUI2; 0.75 for HUI3) and caregivers (ICC = 0.91 and 0.89, respectively) were excellent. There were generally high levels of both convergent and divergent validity. There was limited known-groups validity (mild v moderately and mild v severely affected patients reported different overall HUI2 and HUI3 scores; there was no difference between those with moderate and severe disabilities). The same pattern was found for caregivers. We conclude that the telephone-administered HUI2/3 appears to be reliable and have at least limited validity. However, the proportions of missing data for patient/caregivers administered the HUI2/3 were surprisingly high. This high proportion of missing data would limit the use of the telephone-administered HUI2/3 in the context of stroke trials. Copyright © 2002 by National Stroke Association     

What contributes to quality of life in patients with Parkinson's disease?

OBJECTIVE: To identify the factors that determine quality of life (QoL) in patients with idiopathic Parkinson's disease in a population based sample. Quality of life (QoL) is increasingly recognised as a critical measure in health care as it incorporates the patients' own perspective of their health. METHODS: All patients with Parkinson's disease seen in a population based study on the prevalence of parkinsonism were asked to complete a disease-specific QoL questionnaire (PDQ-39) and the Beck depression inventory. A structured questionnaire interview and a complete neurological examination, including the Hoehn and Yahr scale, the Schwab and England disability scale, the motor part of the unified Parkinson's disease rating scale (UPDRS part III), and the mini mental state examination were performed by a neurologist on the same day. RESULTS: The response rate was 78%. The factor most closely associated with QoL was the presence of depression, but disability, as measured by the Schwab and England scale, postural instability, and cognitive impairment additionally contributed to poor QoL. Although the UPDRS part III correlated significantly with QoL scores, it did not contribute substantially to predicting their variance once depression, disability, and postural instability had been taken into account. In addition, patients with akinetic rigid Parkinson's disease had worse QoL scores than those with tremor dominant disease, mainly due to impairment of axial features. CONCLUSION: Depression, disability, postural instability, and cognitive impairment have the greatest influence on QoL in Parkinson's disease. The improvement of these features should therefore become an important target in the treatment of the disease.     

Is there a measurement overlap between depressive symptoms and quality of life?

Background

Previous studies found that depression is associated with a broad impairment in quality of life (QOL). This finding might be associated to a measurement overlap.

Methods

The objective of this study was to verify whether the items of the World Health Organization Quality of Life Instrument-Abbreviated version (WHOQOL-BREF), a measure of generic QOL, are invariant among patients having a current major depressive episode who come from primary care services. We investigated data from primary care services from the 6 countries (Australia, Brazil, Israel, Russia, Spain, and the United States) involved in the baseline sample of the Longitudinal Investigation of Depression Outcomes. The Rasch model was used to analyze items exhibiting differential item functioning (DIF) as a way of assessing invariance in relation to a depression factor defined by the diagnosis of depression using the Composite International Diagnostic Interview. In addition, the Center for Epidemiological Studies-Depression Scale (CES-D) score was correlated with the item and domain scores of the WHOQOL-BREF using the Pearson coefficient.

Results

The sample consisted of 2359 subjects, of which 1193 had a confirmed diagnosis of a current major depressive episode. Of the 26 items of the WHOQOL-BREF, 11 showed DIF due to the depression factor, and the physical domain presented more items displaying DIF. All Pearson coefficients between the WHOQOL-BREF item and domain scores and the CES-D score were weak and moderate (r = −0.13 to r = 0.43).

Conclusions

Our findings indicate that most WHOQOL-BREF items do not exhibit DIF for a current major depressive episode and the variance associated with depression in this generic QOL measure is restricted to some facets of this construct. Thus, we recommend this restricted adjustment for depression in future analyses of this measure. Furthermore, our study indicates that researchers must measure QOL regardless of depression severity.     

Is antiepileptic drug withdrawal status related to quality of life in seizure-free adult patients with epilepsy?

PurposeThis study aimed to determine factors that influence the quality of life (QOL) of seizure-free adult patients with epilepsy in western China and address whether these determinants vary by antiepileptic drug (AED) withdrawal.MethodsA cross-sectional study was conducted in the epilepsy outpatient clinic of West China Hospital, Sichuan University. Patients with epilepsy who were aged at least 18 years and seizure-free for at least 12 months were interviewed using the Quality of Life in Epilepsy Inventory-31 (QOLIE-31); the National Hospital Seizure Severity Scale (NHS3); the Liverpool Adverse Events Profile (LAEP); the Social Support Rating Scale (SSRS); the Family Adaptation, Partnership, Growth, Affection, and Resolve (APGAR) Questionnaire; and the Scale of Knowledge and Attitudes Toward Epilepsy. Eligible patients were divided into two groups: the nonwithdrawal group and the withdrawal group. The independent-samples t-test was used to compare the QOL between the groups, and linear regression analysis was used to explain the variance of their QOL.ResultsOne hundred and eighty-seven (135 nonwithdrawal and 52 withdrawal) patients were included in the analysis. The QOLIE-31 overall score of the nonwithdrawal group was lower than that of the withdrawal group (p < 0.01). The LAEP score was the strongest predictor of the QOLIE-31 overall score of all subjects, explaining 26.9% of the variance. The second strongest predictor was the SSRS score, explaining 12.9%, and the other predictors were the NHS3 score (5.2%), education level (2.3%), age (1.5%), and marriage (1.0%). Furthermore, the strongest predictors in the nonwithdrawal group were the LAEP and SSRS scores, while in the withdrawal group, the strongest predictors were stigma scores and employment.ConclusionAmong the seizure-free adult patients with epilepsy, those with AED withdrawal experienced better QOL than those continuing AED treatment. Furthermore, the determinants of QOL varied by AED withdrawal. Individual strategies to optimize QOL should be developed based on these differences.     

Is there a differential impact of fatigue and physical disability on quality of life in multiple sclerosis?

To investigate the quantitative impact of fatigue on health-related quality of life (HRQoL) in multiple sclerosis (MS) and to determine whether fatigue was related to HRQoL independently from bodily disability, data on HRQoL were ascertained for 87 patients with definite MS by using the SF-36. HRQoL scores and subscores were related to the basic MS disability score (EDSS) and further MS parameters, and to fatigue, which was assessed by using different fatigue scales. Factors related to predominantly physical but not mental HRQoL aspects were identified as related to EDSS, duration of disease, and age. Different fatigue scores did impact significantly on both physical and especially mental HRQoL. The influence of fatigue on physical HRQoL was independent from EDSS. Fatigue experience reduces HRQoL markedly and independently from EDSS. Therefore, fatigue assessment provides additional information to disability-derived scales such as the EDSS with relevant implications for therapeutic decisions.