Self report on quality of life in dementia with modified COOP/WONCA charts.

This study investigates whether a modified version of the COOP/WONCA charts is suitable to assess quality of life (QOL) in persons with dementia in nursing homes. A group of 112 institutionalized persons with moderate to severe dementia were approached for an interview. Twenty-two were observed not to be communicative, leaving 90. Sixty-seven persons were able to answer four out of six questions adequately (interviewable). Inter-observer reliability (n=38) was excellent (weighted kappa 0.90 to 0.97). Test-retest reliability (n=34; one week interval) ranged from poor for Daily and Social Activities and for the QOL charts, to moderate for Feelings and Pain, and satisfactory for Physical Functioning (weighted kappa 0.23 to 0.67). Interviewability was associated with severity of the dementia and communication ability. Support for convergent validity was found in medium-sized Spearman correlations between the COOP/WONCA charts and related variables. Support for discriminant validity was found in the absence of association between the Ccharts and non-related variables. The modified COOP/WONCA charts can be used to assess QOL in 60% of people with dementia in nursing homes but further modification is needed. Severe cognitive impairment and communication disabilities proved limiting factors for the use of the instrument. Although the illustrations on the charts appeared not to be helpful, the written response options in addition to verbal presentation proved useful during the administration of the charts.

Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia.

The study tested the hypotheses that integrated support, in which patients and carers are both supported by one professional staff member, will be more effective in reducing the feelings of (over)burden of carers and in positively influencing some potential determinants of experienced burden than non-integrated support, such as psychogeriatric day-care. A quasi-experimental pre-test/post-test control group design was applied with matched groups and measurements at baseline and after seven months. Fifty-five of the eighty dyads (31% dropped out) of persons with mild-to-moderate dementia and their carers who presented for four community meeting centres and three day-care centres in nursing homes over an 18 month period, were included in the study. The carers in the Meeting Centres Support (MCS) Program participated in an integrated family support program together with the persons with dementia, while the carers in the control group only received respite through psychogeriatric day-care. Standardized questionnaires were applied to measure some indicators of burden experienced by the carers (feelings of stress, life dissatisfaction, psychological and psychosomatic complaints), as well as some potential determinants of experienced burden (feeling of competence, coping strategies, experienced support and loneliness). Furthermore, as an indicator of feelings of (over)burden of the carer, the time between start of participation in one of the programs and institutionalization in a nursing home was calculated. After seven months the carers in the MCS group (n = 36), compared to the carers in regular psychogeriatric day-care (n = 19), showed a moderate positive effect on the feeling of competence (effect size 0.45). No effect was found on feelings of stress, dissatisfaction or psychological and psychosomatic complaints. However, as compared to the control group in regular day-care, the persons with dementia in the MCS Program participated for a longer period of time before they were placed in a nursing home. The MCS Program proved more effective than psychogeriatric day-care in influencing the feeling of competence of the carers, and seems to lead to an increased delay of nursing home placement of the person with dementia, as compared to regular day-care. Because of the small sample and limited power of the study, and the possible influence of the selection of carers on the study outcome, further research into the value of meeting centres for carers of people with dementia is recommended.

Association of prenatal phenobarbital and phenytoin exposure with genital anomalies and menstrual disorders.

BACKGROUND: Animal studies demonstrated that early exposure to phenobarbital decreases reproductive function. This study investigates whether prenatal exposure to these anticonvulsants affects human genital tract development. METHODS: Genital anomalies at birth were studied retrospectively in 90 phenobarbital-exposed, 108 phenobarbital plus phenytoin-exposed, and 198 matched control infants. Of this group, 72 drug-exposed males, 75 drug-exposed females, and 147 matched control subjects participated in a follow-up and were interviewed at age 19-35. Differences between groups were tested by chi-square and t-tests. RESULTS: A total of 15% of the phenobarbital-exposed boys versus 2.8% control boys had undescended testes at birth. More anticonvulsant-exposed (24%) than control males (11%) had received medical treatment for genital anomalies. Anticonvulsant-exposed females more often had irregularities in menstrual cycles (31% vs. 17%) and bleeding (15% vs. 3%) and reported more problems during pregnancy. CONCLUSIONS: Prenatal exposure to anticonvulsants seems to induce minor genital anomalies and may affect reproductive function.

DSM-IV internal construct validity: when a taxonomy meets data.

The use of DSM-IV based questionnaires in child psychopathology is on the increase. The internal construct validity of a DSM-IV based model of ADHD, CD, ODD, Generalised Anxiety, and Depression was investigated in 11 samples by confirmatory factor analysis. The factorial structure of these syndrome dimensions was supported by the data. However, the model did not meet absolute standards of good model fit. Two sources of error are discussed in detail: multidimensionality of syndrome scales, and the presence of many symptoms that are diagnostically ambiguous with regard to the targeted syndrome dimension. It is argued that measurement precision may be increased by more careful operationalisation of the symptoms in the questionnaire. Additional approaches towards improved conceptualisation of DSM-IV are briefly discussed. A sharper DSM-IV model may improve the accuracy of inferences based on scale scores and provide more precise research findings with regard to relations with variables external to the taxonomy.

Facial attractiveness and facial impairment ratings in children with craniofacial malformations.

OBJECTIVE: This study examined (1) the effects of type of malformation, sex of ratee, and sex of rater on facial attractiveness and facial impairment ratings, and (2) the reliability of judgments on facial attractiveness and facial impairment and the association between these two constructs. SETTING: A university hospital for children. PARTICIPANTS: Raters were eight volunteers from the student population in a university, four men and four women. MAIN OUTCOME MEASURES: Raters judged frontal and lateral view slides of children with various types of craniofacial malformations both on a 5-point facial attractiveness scale and on a 5-point facial impairment scale. RESULTS: Main effects were found for type of malformation, sex of ratee, and sex of rater. No interaction effects were found among type of malformation, sex of ratee, and sex of rater. Interrater reliability was moderate to high, both for attractiveness ratings and for impairment ratings. The correlation between facial attractiveness and facial impairment was also moderate to high. CONCLUSIONS; Both condition parameters (type of malformation) as well as social parameters (sex of rater and sex of ratee) seem to influence judgments on attractiveness and impairment. Facial attractiveness and facial impairment can be rated reliably in children with (cerebro)craniofacial dysplasias. Raters consider these concepts to be very similar but not identical.

Care complexity in the general hospital: results from a European study.

There is increasing pressure to effectively treat patients with complex care needs from the moment of admission to the general hospital. In this study, the authors developed a measurement strategy for hospital-based care complexity. The authors' four-factor model describes the interrelations between complexity indicators, highlighting differences between length of stay (LOS), objective complexity (such as medications or consultations), complexity ratings by the nurse, and complexity ratings by the doctor. Their findings illustrate limitations in the use of LOS as a sole indicator for care complexity. The authors show how objective and subjective complexity indicators can be used for early and valid detection of patients needing interdisciplinary care.

Association of prenatal phenobarbital and phenytoin exposure with small head size at birth and with learning problems.

UNLABELLED: Small head size has been observed in prenatally anticonvulsant-exposed neonates. In infancy, cognitive impairments were revealed. It is presently unknown whether these impairments are permanent or disappear after puberty. We studied the link between the prenatal influence of anticonvulsants on brain development and cognitive functioning in adulthood: a retrospective study on head size and a follow-up assessing cognitive capacities among adults who had been included in the retrospective study. The retrospective study comprised 172 exposed and 168 control neonates, matched with respect to age, sex and their mothers' age. Prenatally phenobarbital + phenytoin-exposed neonates had a significantly smaller occipitofrontal circumference (OFC) than prenatally phenobarbital-monotherapy-exposed and control neonates (mean difference of 0.7 cm). In the follow-up, no difference in cognitive functioning was found between the exposed and the control groups. Most of the prenatally anticonvulsant-exposed subjects had normal intellectual capacity. However, 12% of the exposed subjects versus 1% of the controls had persistent learning problems. In addition, more of the exposed subjects were mentally retarded. There was no clear relationship between learning problems and small OFC, maternal epilepsy or unfavourable family climate. CONCLUSIONS: We conclude that the combination of phenobarbital + phenytoin affects the fetal OFC. The smaller OFC does not seem to be related to cognitive functioning in adulthood, but learning problems and mental retardation proved to be more prevalent among exposed subjects. Phenobarbital and phenytoin may therefore affect cognitive capacity but only in infants who are susceptible to this particular influence of the drugs.

Effect of integrated family support versus day care only on behavior and mood of patients with dementia.

OBJECTIVE: This study tests the hypothesis that integrated family support, in which patients and caregivers are both supported by one professional staff, is more effective in influencing behavior problems and mood of the dementia patient than nonintegrated support, such as psychogeriatric day care only. DESIGN: A quasi-experimental pretest-posttest control group design with matched groups was applied. SETTING: Psychogeriatric day-care centers of four community centers and three nursing homes. PARTICIPANTS: Fifty-six dementia patients living at home and their caregivers. INTERVENTION: The patients in the experimental group (n = 33) participated together with their caregivers in an integrated family support program, whereas the patients in the control group (n = 23) received psychogeriatric day care only. MEASUREMENTS: Behavior problems and mood were observed using standardized behavior observation scales. RESULTS: After 7 months the experimental support program, compared to the regular psychogeriatric day care, showed a large positive effect on the total number of behavior problems (effect size .75), and also specifically on the degree of inactivity (effect size .66) and nonsocial behavior (effect size .61). No effect on mood was found. CONCLUSIONS: In influencing the total amount of behavior problems, as well as the degree of inactivity and nonsocial behavior, the integrated family support program proved to be more effective than psychogeriatric day care. Because behavior problems are an important determinant for admission of persons with dementia into a nursing home, integrated family support may contribute to the delay of institutionalization.

Social functioning in children with a chronic illness.

Behavioural, cognitive, and affective aspects of social functioning of 107 children with a chronic illness were studied. The aim of the study was twofold: (1) to describe peer interaction of children with a chronic illness in comparison with normative data of healthy children; (2) to examine whether peer interaction was related to the illness characteristics physical restrictions and pain. Peer interaction was assessed with measures of social activities (CBCL), parent-reported social skills (CABS), child-reported social skills (MESSY), social self-esteem (SPPC), and social anxiety (SASK). Results showed no differences between diagnosis groups, suggesting that the social consequences of chronic illness are not diagnosis specific. Compared with healthy norms, chronically ill children reported less aggressive behaviour. The parent-report measures suggested a similar trend. Children with chronic illness also tended to display more submissive behaviour than healthy norms, as perceived by their parents. With regard to illness characteristics, both physical restrictions and pain were associated with restricted social activities, but not with other measures of social peer interaction. Children who display submissive behaviour and children who are restricted in their social activities should receive extra attention because they are especially vulnerable for problems in their social development.

Dummy use, thumb sucking, mouth breathing and cot death.

UNLABELLED: In the Netherlands a case control study into cot death was undertaken as part of the European Concerted Action on sudden infant death syndrome. Children between 1 week and 2 years of age who died suddenly and unexpectedly were reported. Non cot death cases were excluded after a consensus by three pathologists. The study comprised 73 cot death cases and two controls per case, matched for date of birth. Compared to national data, the coverage was 91%. We investigated whether in the Netherlands new risk or preventive factors might have emerged. The present report focuses on the relative risks of dummy use, thumb sucking, breast versus bottle feeding, and sleeping with the mouth open. CONCLUSION: Dummy use seems to be an important preventive factor for cot death in the Netherlands, independent of other risk factors such as prone sleeping and bedding. We recommend dummy use at least for bottle-fed infants. We found no indication that dummies influence the frequency or duration of breast feeding but more data are needed. Mouth breathing appears to be associated with an increased risk for cot death, but again further research is needed.

Syndrome dimensions of the child behavior checklist and the teacher report form: a critical empirical evaluation.

The construct representation of the cross-informant model of the Child Behavior Checklist (CBCL) and the Teacher Report Form (TRF) was evaluated using confirmatory factor analysis. Samples were collected in seven different countries. The results are based on 13,226 parent ratings and 8893 teacher ratings. The adequacy of fit for the cross-informant model was established on the basis of three approaches: conventional rules of fit, simulation, and comparison with other models. The results indicated that the cross-informant model fits these data poorly. These results were consistent across countries, informants, and both clinical and population samples. Since inadequate empirical support for the cross-informant syndromes and their differentiation was found, the construct validity of these syndrome dimensions is questioned.

Prenatal exposure to anticonvulsants and psychosexual development.

Animal studies have shown that prenatal exposure to the anticonvulsant drugs phenobarbital and phenytoin alters steroid hormone levels which consequently leads to disturbed sexual differentiation. In this study, possible sequelae of prenatal exposure to these anticonvulsants on gender development in humans were investigated. A follow-up study was carried out in phenobarbital- and phenytoin-exposed subjects and control subjects matched for age, sex, and the mothers' ages. Subjects were born in the Academic Medical Center between 1957 and 1972. Out of 243 exposed and 222 control subjects who were asked to volunteer, 147 exposed subjects (72 male, 75 female) and equal numbers of their matched control subjects participated in the follow-up study. They were interviewed and were asked to fill out questionnaires on gender role behavior, gender development, and sexual orientation. As a group, exposed and control subjects did not differ with respect to gender role behavior, although higher numbers of prenatally anticonvulsant-exposed subjects reported current or past cross-gender behavior and/or gender dysphoria. Three prenatally anticonvulsant-exposed subjects were transsexuals and had undergone sex reassignment surgery, a remarkably high rate given the rarity of transsexualism. In addition, two exposed males had exclusively homosexual experiences, whereas none of the control males reported exclusive homosexual behavior. The groups did not differ in attainment of pubertal psychosexual milestones.

Risk and preventive factors for cot death in The Netherlands, a low-incidence country.

UNLABELLED: In the Netherlands an 18 months case control study into cot death was undertaken as part of the European Concerted Action (ECAS) on sudden infant death syndrome to determine the relative risk of prone sleeping and other sleep practices. Physicians in the Netherlands were asked to report to the study centre all sudden and unexpected deaths of children between 1 week and 2 years of age. Non cot death cases were deleted from further analysis after a consensus was reached by three pathologists, not primarily involved in the post mortem diagnosis. A positive response of families was achieved in 91% of cases registered in the Central Bureau of Statistics. The study comprised 73 cot deaths and 146 controls, two for each case and matched for date of birth. All families were visited at home for completion of a questionnaire. The cot death rate has dropped considerably over the past 10 years after the recommendations on supine sleeping to a low of 0.26 per 1000 live born infants. In addition to the ECAS objective, we wanted to establish whether previously found risk factors are still valid in the present situation or that new factors might have emerged, some of them possibly protective. CONCLUSION: Placing an infant prone or on side on last occasion, secondary prone position (not placed prone but turned to prone), inexperienced prone sleeping and use of a duvet, leading to head and body being covered, were shown to be risk factors. Preventive factors were using a cotton sleeping-sack and a dummy. Even in a low incidence country, such as the Netherlands, there are indications that further prevention is possible.

Case-control study of current validity of previously described risk factors for SIDS in The Netherlands.

This study aimed to assess whether previously established risk factors for sudden infant death syndrome (SIDS) are still valid now that the incidence in the Netherlands has dropped to 0.26 per 1000 liveborn infants. A distinction was made between immutable and mutable risk factors. This case-control study (part of the European Concerted Action on SIDS) comprised 73 SIDS cases and 146 controls and lasted from March 1995 to September 1996. Adjustments were made for sleeping position and bedding factors by treating them as covariables. Apart from these factors, well known risk factors that remain of importance in the Netherlands are: male sex, young maternal age, twins, and low socioeconomic status. These factors are largely immutable. Other well known risk factors which might reflect attitudes to child care and could possibly be mutable are: smoking, alcohol consumption by the mother, bottle feeding, and change of babycare routine. Intervention strategies should focus on early signalling, thereby assisting parents in changing these unfavourable parenting attitudes. Information on optimal child care and extra support by public health nurses specifically aimed at families at risk could help to decrease further the incidence of SIDS in the Netherlands.

Problems and solutions in longitudinal research: from theory to practice.

Longitudinal studies provide the only method for directly studying the natural course of human growth and development and are therefore invaluable, both to public health and clinical medicine. However, longitudinal studies are accompanied by specific problems. The purpose of this final paper is to discuss in two separate sections some of the methodological, analytical and practical issues regarding the relevance of the findings reported. Examples of such problems and their solutions are described. Methodological issues discussed concern statistical conclusion validity, internal validity and construct validity of longitudinal studies. Practical issues discussed concern the design of longitudinal studies, the recruitment and retention of subjects, and the methods used. Finally, examples of the significance of longitudinal research outcomes to public health and clinical medicine are given.

A new approach to tracking of subjects at risk for hypercholesteremia over a period of 15 years: The Amsterdam Growth and Health Study.

Because 'traditional' tracking analyses have some drawbacks, this paper presents a new method, which is based on generalized estimating equations (GEE). The new method is illustrated with data from the Amsterdam Growth and Health Study. In this observational longitudinal study six repeated measurements were carried out on 181 subjects (initial age 13 years) over a period of 15 years. Tracking was assessed for total cholesterol (TC), high density lipoprotein (HDL) and the TC/HDL ratio by calculating the odds ratio (OR) for subjects at risk at the age of 13 years regarding the development of their risk status over a 15 year period. These ORs can be interpreted as tracking coefficients. Three methods were compared: percentage of subjects who maintain their position in a certain risk group (i.e. univariate logistic regression), multivariate logistic regression and GEE. The three methods differ in the possibility of using all available data in the analysis and in the possibility of adjusting for certain covariates. Based on this, the GEE-approach seemed to be the most appropriate to calculate tracking coefficients for subjects at risk. When the risk groups were defined according to objective (absolute) risk values, for TC the GEE-OR was 10.1 (95% confidence interval (CI) 5.0-21.9), for HDL 14.4 (95% CI 7.2-28.7) and for the TC/HDL ratio 25.5 (95% CI 11.5-56.8). It can be concluded that the GEE-approach is very suitable to assess tracking for subjects at risk.

Relation between the longitudinal development of lipoprotein levels and biological parameters during adolescence and young adulthood in Amsterdam, The Netherlands.

STUDY OBJECTIVES: To analyse the relation between the longitudinal development of total serum cholesterol (TC), high density lipoprotein cholesterol (HDL), and the TC/ HDL ratio and the longitudinal development of the biological parameters body fatness (SSF), lean body mass (LBM), and cardiopulmonary fitness (VO2-max). The relations were analysed with generalised estimating equations (GEE). SETTING: The relations were investigated with data from the Amsterdam growth and health study, a longitudinal study in which six measurements were carried out within a period of 15 years. PARTICIPANTS: Altogether 98 females and 84 males aged 13 years at the start of the study. MAIN RESULTS: Adjusted for lifestyle and other biological parameters, the longitudinal development of TC was inversely related to the development of LBM (standardised regression coefficient beta = -0.27; p < or = 0.01) and positively to SSF (beta males = 0.32; p < or = 0.01 and beta females = 0.15; p < or = 0.01). HDL was inversely related to LBM (beta = -0.26; p < or = 0.01) and positively to VO2-max (beta = 0.08; p < or = 0.05). The TC/HDL ratio was positively related to SSF (beta males = 0.39; p < or = 0.01 and beta females = 0.13; p < or = 0.01) and inversely to VO2-max (beta = -0.09; p < or = 0.05). CONCLUSIONS: The longitudinal analyses showed that body fatness was related to a high risk profile with respect to hypercholesterolaemia, and cardiopulmonary fitness to a low risk profile. Furthermore, it was shown that using body mass index as an indicator of body fatness in relation to lipoprotein values, has some important drawbacks.

Relation between the longitudinal development of lipoprotein levels and lifestyle parameters during adolescence and young adulthood.

The longitudinal relationship between serum levels of lipoproteins and lifestyle measures (e.g., intake of cholesterol, carbohydrates, saturated fatty acids [SFA], polyunsaturated fatty acids [PUFA], the PUFA/SFA (P:S) ratio, alcohol consumption, smoking behavior, and daily physical activity) was investigated over a period of 15 years in a cohort study (the Amsterdam Growth and Health Study). Members of the cohort were 13 years of age at commencement of the study and were 27 years old at termination. The unique feature of the study presented is that the longitudinal relations were analyzed with generalized estimating equations, a statistical technique in which the relations at different time-points are tested simultaneously. The development of the total serum cholesterol (TC) level was positively related to the intake of cholesterol and negatively to the P:S ratio. The development of high-density-lipoprotein cholesterol (HDL) level was positively related to alcohol consumption and daily physical activity and negatively to smoking behavior. The development of the TC:HDL ratio was negatively related to alcohol consumption and positively to both smoking behavior and carbohydrate intake.

A study on the convergent and discriminant validity of the Dental Anxiety Inventory.

A correlational design was used to assess the convergent and discriminant validity of the Dental Anxiety Inventory (DAI), a newly developed measurement instrument designed to circumvent shortcomings of other dental anxiety questionnaires. Convergent validity was supported by a high correlation between the DAI and Corah's Dental Anxiety Scale. Discriminant validity was supported by small positive correlations with scales for neuroticism, anxiety, and fear, and nonsignificant correlations with other variables such as extroversion. The results support the construct validity of the DAI.