Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD. METHODS: We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement). RESULTS: The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n = 9: .30-1.00; n = 3: 85%-100%). DISCUSSION: Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.

Intervention effects on professionals' attitudes towards the participation of adults with visual and severe or profound intellectual disabilities.

BACKGROUND: We investigated the effects of the "Care for Participation+" (CFP+) intervention on direct support professionals' (DSPs') attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID). METHODS: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs' attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs' written profiles of adults with VSPID. RESULTS: CPP+ and the Participation Mind Map control group showed a positive trend for the "leisure/recreation," "social relations," and "ability to act" APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls. CONCLUSION: CFP+ had positive effects on DSPs' attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+.

Construct validity of the Actiwatch-2 for assessing movement in people with profound intellectual and multiple disabilities.

BACKGROUND: Valid measures to assess either small or assisted performed movements of people with profound intellectual and multiple disabilities (PIMD) are required. We analysed the construct validity of the Actiwatch-2 to assess movement in people with PIMD. METHOD: Twenty-two persons with PIMD were video recorded while wearing an Actiwatch-2. We used 15s-partial-interval recording to record upper body movement, body position and activity situation. Multilevel analyses were used to evaluate if the Actiwatch-2, based on produced counts, could detect changes in these factors. RESULTS: The presence versus absence of upper body movement and an activity situation in which participants were involved versus not involved resulted in significantly higher counts, with a large variety in predicted counts between participants. No relationship between body position and counts was found. CONCLUSIONS: The Actiwatch-2 seems able to assess obvious upper body movement in people with PIMD, and whether there is involvement in an activity situation.

Social competence in newly diagnosed pediatric brain tumor patients.

Brain tumors (BTs) are a common pediatric malignancy. Improved treatment has resulted in higher survival rates. There is, however, increasing concern about adverse effects of the disease and its treatment, including effects on social competence (i.e. effective social functioning in everyday life). The aim of this study is to examine multiple levels of social competence (i.e. social skills and social adjustment) in newly diagnosed pediatric BT patients. Thirty newly diagnosed BT patients aged 5-12 years were assessed shortly after diagnosis with a neuropsychological test battery focusing on social competence, including tests for IQ, social skills (i.e. social-affective and executive functioning) and social adjustment (rated by parents and teachers). Their performance was compared to 95 healthy controls who completed the same assessment. Patients and healthy controls were largely comparable with regard to demographic and environmental factors and did not differ on measures of IQ, social skills and social adjustment. Furthermore, age was found to have a positive significant effect on social skills independent of group. Shortly after diagnosis, pediatric BT patients did not perform different from healthy controls on IQ and measures of social skills and social adjustment. This is an encouraging finding. However, because of potentially neurotoxic adjuvant therapy and the ongoing development of social skills, longitudinal follow-up studies are needed to investigate long-term outcome regarding social competence in BT survivors.

Development of atypical parental behavior during an inpatient family preservation intervention program.

Since failed reunification is a detrimental outcome for children, particularly infants and toddlers, the aim of this study was to gain insight into support to families in multiple-problem situations to help them achieve sustainable good-enough parenting. Therefore, we examined outcomes of an assessment-based inpatient family preservation program. We prepared a thorough target-population description (n = 70) using file analysis. Next, we examined atypical parental behavior during the intervention using the Atypical Maternal Behavior Instrument for Assessment and Classification with a repeated measures design (n = 30). The family files revealed a great number of issues at the family, parent, and child levels, such as practical matters, problems in parent functioning and between parents, and difficulties in the broader environment. We found a significant decline in three dimensions of atypical parental behavior over time. This program has great potential in supporting vulnerable families in their pursuit of family preservation.

Debido a que un fracasado intento de reunificación es un resultado perjudicial para los niños, particularmente los infantes y niños muy pequeñitos, la meta de este estudio fue adquirir percepciones en cuanto al apoyo a familias en situaciones de problemas múltiples para ayudarles a lograr una crianza sostenible suficientemente buena. Examinamos, por tanto, resultados de un programa de paciente interno para la preservación de la familia (FP) basado en evaluación. Preparamos una detallada descripción de la población de enfoque (n = 70) usando análisis de registros. Examinamos conductas atípicas de los padres durante la intervención usando el Instrumento de Conducta Materna Atípica para Evaluación y Clasificación (AMBIANCE) con un diseño de medidas repetidas (n = 30). Los registros familiares revelaron un gran número de asuntos al nivel de la familia, los padres y los niños, tales como asuntos prácticos, problemas en el funcionamiento de los padres y entre padres, y dificultades en el más amplio entorno. Encontramos una baja significativa en tres dimensiones de conducta atípica de los padres a lo largo del tiempo. El programa FP tiene un enorme potencial para apoyar a familias vulnerables en su esfuerzo por preservar la familia.

Puisque la réunification échouée est un résultat détrimentaire pour les enfants, en particulier les nourrissons et les jeunes enfants, le but de cette étude était d'explorer le soutien aux familles dans des situations avec de nombreux problèmes afin de les aider à atteindre un parentage durable et suffisant. Nous avons donc examiné les résultats d'un programme de maintien familial (abrégé ici MF en français) fondé sur l'évaluation et en hospitalisation. Nous avons préparé une description approfondie de la population cible (n = 70) en utilisant une analyse par dossier. Nous avons examiné le comportement parental atypique durant l'intervention en utilisant AMBIANCE, l'instrument de comportement maternel atypique pour l'évaluation et la classification avec une conception à mesures répétées (n = 30). Les dossiers familiaux ont révélé un grand nombre de problèmes au niveau de la famille, du parent et de l'enfant, tels que des problèmes pratiques, des problèmes dans le fonctionnement du parent ou entre les parents, et des difficultés dans le milieu plus large. Nous avons trouvé une baisse importante sur trois dimensions du comportement atypique parental au fil du temps. Le programme MF offre de grandes possibilités dans le soutien aux familles vulnérables dans leur quête de maintien familial.

Social competence in children with brain disorders: a meta-analytic review.

Social competence, i.e. appropriate or effective social functioning, is an important determinant of quality of life. Social competence consists of social skills, social performance and social adjustment. The current paper reviews social skills, in particular emotion recognition performance and its relationship with social adjustment in children with brain disorders. In this review, normal development and the neuro-anatomical correlates of emotion recognition in both healthy children and adults and in various groups of children with brain disorders, will be discussed. A systematic literature search conducted on PubMed, yielded nine papers. Emotion recognition tasks were categorized on the basis of task design and emotional categories to ensure optimal comparison across studies before an explorative meta-analysis was conducted. This meta-analytic review suggests that children with brain disorders show impaired emotion recognition, with the recognition of sad and fearful expressions being most impaired. Performance did not seem to be related to derivative measures of social adjustment. Despite the limited number of studies on a variety of brain disorders and control groups, outcomes were quite consistent across analyses and corresponded largely with the existing literature on development of emotion recognition in typically developing children. More longitudinal prospective studies on emotion recognition are needed to gain insight into recovery and subsequent development of children with distinct brain disorders. This will aid development, selection and implementation of interventions for improvement of social competence and quality of life in children with a brain disorder.

The quality of the childrearing environment of refugee or asylum-seeking children and the best interests of the child: reliability and validity of the BIC-Q.

The Best Interest of the Child Questionnaire (BIC-Q) has been designed as an instrument for screening the quality of the rearing situation of asylum-seeking or refugee children. It is intended to aid legal decisions in asylum procedures. The aim of this study was to determine the reliability and the construct validity of the BIC-Q. Based on a study sample of refugee or asylum-seeking children in the Netherlands (N = 74), the psychometric quality of the BIC-Q was investigated using Cohen's kappa for the inter- and intrarater reliability and a nonparametric item response model for the construct validity. The interrater and intrarater reliabilities of the BIC-Q were good (kappa = .65 and .74 respectively). The results of the item response model revealed that the 14 pedagogical environmental conditions formed a strong and valid measurement scale for the quality of the childrearing environment (H = .55; rho = .94). Preliminary results indicate that the BIC-Q may be applied to support decisions on where the asylum-seeking or refugee child has the best opportunities for development.

Sub-groups (profiles) of individuals experiencing post-traumatic growth during the COVID-19 pandemic.

Objective: Some people experience post-traumatic growth (PTG), entailing positive changes such as a greater appreciation of life following traumatic events. We examined PTG in the context of the negative consequences of the COVID-19 pandemic, notably working from home and social distancing. We aimed to assess whether distinct sub-groups (profiles) of individuals experiencing PTG could be identified by how they appraised and coped with the COVID-19 pandemic. Method: For this cross-sectional study, we used convenience sampling. In total, 951 participants from the general population completed an online questionnaire with items focusing on primary and secondary appraisal, positive reappraisal, rumination, and coping flexibility. For the latent profile analysis, we selected a sample of 392 individuals who had experienced moderate degrees of pandemic-related PTG, reporting at least two of the 10 positive changes in the PTG Inventory-Short Form. Results: We identified two distinct profiles among people experiencing PTG. The first was characterised by low levels of primary appraisal and stressfulness and higher levels of secondary appraisal (e.g., resilient group), increased coping flexibility and greater use of positive reappraisal. The second was characterised by higher levels of stressfulness and primary appraisal (e.g., stressed group) and greater use of rumination. Conclusion: The two sub-groups evidently appraised and coped with the COVID-19 pandemic differently. Therefore, future research should account for these different profiles of people experiencing PTG.

A Safe Home? A Qualitative Study into the Experiences of Adolescents Growing Up in the Dutch Area Impacted by Earthquakes Induced by Gas Extraction.

For decades, the Netherlands has experienced minor earthquakes due to gas extraction. This study aims to obtain insight into the experiences of adolescents and the impact of these earthquakes on their well-being and living environment. Focus groups were held with 24 adolescents, and interviews were held with 3 adolescents (N = 27; M = 15 years). Through qualitative analysis, we identified six themes. The adolescents shared experiences of anxiety related to the earthquakes and their consequences and considered these to be a normal part of their life. Anxiety and feelings of endangerment not only related to their own experiences but were also connected to the impact of earthquakes on their social environment, such as the restoration of buildings. Several sources of support (e.g., talking, social cohesion) were mentioned to deal with the negative consequences of the earthquakes. A lack of trust in the government was an additional main theme, with adolescents mentioning several needs, potentially relevant to policymakers in the Netherlands. Growing up in the gas extraction area of Groningen had many consequences on the adolescents in the study, who felt inhibited from expressing feelings of anxiety and fear. To support their needs, interventions at the individual, family, educational, societal, and policy levels are recommended.

Seasonality in depressive and anxiety symptoms among primary care patients and in patients with depressive and anxiety disorders; results from the Netherlands Study of Depression and Anxiety.

BACKGROUND: Little is known about seasonality of specific depressive symptoms and anxiety symptoms in different patient populations. This study aims to assess seasonal variation of depressive and anxiety symptoms in a primary care population and across participants who were classified in diagnostic groups 1) healthy controls 2) patients with a major depressive disorder, 3) patients with any anxiety disorder and 4) patients with a major depression and any anxiety disorder. METHODS: Data were used from the Netherlands Study of Depression and Anxiety (NESDA). First, in 5549 patients from the NESDA primary care recruitment population the Kessler-10 screening questionnaire was used and data were analyzed across season in a multilevel linear model. Second, in 1090 subjects classified into four groups according to psychiatric status according to the Composite International Diagnostic Interview, overall depressive symptoms and atypical versus melancholic features were assessed with the Inventory of Depressive Symptoms. Anxiety and fear were assessed with the Beck Anxiety Inventory and the Fear questionnaire. Symptom levels across season were analyzed in a linear regression model. RESULTS: In the primary care population the severity of depressive and anxiety symptoms did not show a seasonal pattern. In the diagnostic groups healthy controls and patients with any anxiety disorder, but not patients with a major depressive disorder, showed a small rise in depressive symptoms in winter. Atypical and melancholic symptoms were both elevated in winter. No seasonal pattern for anxiety symptoms was found. There was a small gender related seasonal effect for fear symptoms. CONCLUSIONS: Seasonal differences in severity or type of depressive and anxiety symptoms, as measured with a general screening instrument and symptom questionnaires, were absent or small in effect size in a primary care population and in patient populations with a major depressive disorder and anxiety disorders.

Safety of laparoscopy versus laparotomy in early-stage endometrial cancer: a randomised trial.

BACKGROUND: The standard surgery for early-stage endometrial cancer is total abdominal hysterectomy (TAH) and bilateral salpingo-oophorectomy, which is associated with substantial morbidity. Total laparoscopic hysterectomy (TLH) and bilateral salpingo-oophorectomy is less invasive and is assumed to be associated with lower morbidity, particularly in obese women. This study investigated the complication rate of TLH versus TAH in women with early-stage endometrial cancer. METHODS: This randomised trial was done in 21 hospitals in The Netherlands, and 26 gynaecologists with proven sufficient skills in TLH participated. 283 patients with stage I endometrioid adenocarcinoma or complex atypical hyperplasia were randomly allocated (2:1) to the intervention group (TLH, n=187) or control group (TAH, n=96). Randomisation by sequential number generation was done centrally in alternate blocks of six and three participants, with stratification by trial centre. After assignment, the study coordinators, patients, gynaecologists, and members of the panel were not masked to intervention. The primary outcome was major complication rate, assessed by an independent panel. Data were analysed by a modified intention-to-treat analysis, since two patients in both groups were excluded from the main analysis. This trial is registered with the Dutch trial registry, number NTR821. FINDINGS: The proportion of major complications was 14.6% (27 of 185) in the TLH group versus 14.9% (14 of 94) in the TAH group, with a difference of -0.3% (95% CI -9.1 to 8.5; p=0.95). The proportion of patients with an intraoperative major complication (nine of 279 [3.2%]) was lower than the proportion with a postoperative major complication (32 of 279 [11.5%]) and did not differ between TLH (five of 185 [2.7%]) and TAH (four of 94 [4.3%]; p=0.49). The proportion of patients with a minor complication was 13.0% (24 of 185) in the TLH group and 11.7% (11 of 94) in the TAH group (p=0.76). Conversion to laparotomy occurred in 10.8% (20 of 185) of the laparoscopic procedures. TLH was associated with significantly less blood loss (p<0.0001), less use of pain medication (p<0.0001), a shorter hospital stay (p<0.0001), and a faster recovery (p=0.002), but the procedure took longer than TAH (p<0.0001). INTERPRETATION: Our results showed no evidence of a benefit for TLH over TAH in terms of major complications, but TLH (done by skilled surgeons) was beneficial in terms of a shorter hospital stay, less pain, and quicker resumption of daily activities. FUNDING: The Dutch Organization for Health Research and Development (ZonMw), programme efficacy.

Volumetric measurement of pulmonary nodules at low-dose chest CT: effect of reconstruction setting on measurement variability.

OBJECTIVE: To assess volumetric measurement variability in pulmonary nodules detected at low-dose chest CT with three reconstruction settings. METHODS: The volume of 200 solid pulmonary nodules was measured three times using commercially available semi-automated software of low-dose chest CT data-sets reconstructed with 1 mm section thickness and a soft kernel (A), 2 mm and a soft kernel (B), and 2 mm and a sharp kernel (C), respectively. Repeatability coefficients of the three measurements within each setting were calculated by the Bland and Altman method. A three-level model was applied to test the impact of reconstruction setting on the measured volume. RESULTS: The repeatability coefficients were 8.9, 22.5 and 37.5% for settings A, B and C. Three-level analysis showed that settings A and C yielded a 1.29 times higher estimate of nodule volume compared with setting B (P = 0.03). The significant interaction among setting, nodule location and morphology demonstrated that the effect of the reconstruction setting was different for different types of nodules. Low-dose CT reconstructed with 1 mm section thickness and a soft kernel provided the most repeatable volume measurement. CONCLUSION: A wide, nodule-type-dependent range of agreement between volume measurements with different reconstruction settings suggests strict consistency is required for serial CT studies.

The analysis of longitudinal quality of life measures with informative drop-out: a pattern mixture approach.

PURPOSE: The analysis of longitudinal health-related quality of life measures (HRQOL) can be seriously hampered due to informative drop-out. Random effects models assume Missing At Random and do not take into account informative drop-out. We therefore aim to correct the bias due to informative drop-out. METHODS: Analyses of data from a trial comparing standard-dose and high-dose chemotherapy for patients with breast cancer with respect to long-term impact on HRQOL will serve as illustration. The subscale Physical Function (PF) of the SF36 will be used. A pattern mixture approach is proposed to account for informative drop-out. Patterns are defined based on events related to HRQOL, such as death and relapse. The results of this pattern mixture approach are compared to the results of the commonly used random effects model. RESULTS: The findings of the pattern mixture approach are well interpretable, and different courses over time in different patterns are distinguished. In terms of estimated differences between standard dose and high dose, the results of both approaches are slightly different, but have no consequences for the clinical evaluation of both doses. CONCLUSION: Under the assumption that drop-out is at random within the patterns, the pattern mixture approach adjusts the estimates to a certain degree. This approach accounts in a relatively simple way for informative drop-out.

An assessment of clinical interchangeability of TEG and RoTEM thromboelastographic variables in cardiac surgical patients.

BACKGROUND: Bedside thromboelastography is increasingly used, but an assessment of the clinical interchangeability of the 2 major systems, TEG (Hemoscope) and RoTEM (Pentapharm), has not been performed. METHODS: We measured blood samples from 46 cardiac surgical patients after induction of anesthesia with kaolin TEG(R) (kaoTEG), native TEG(R) (natTEG), intrinsic RoTEM (inTEM), and extrinsic RoTEM (exTEM). Each measurement consisted of reaction time (R), coagulation time (K), maximum amplitude (MA), and angle (alpha). Bland-Altman plots and mixed-model analysis were used. To assess repeatability, we made 7 replicated measurements in rapid succession in 2 volunteers. RESULTS: One hundred sixty-six measurements were available for analysis. The R time of the kaoTEG (345 + or - 102 seconds, mean + or - sd) was longer than that of the inTEM (179 + or - 74 seconds, P < 0.001) and the exTEM (55 + or - 28 seconds, P < 0.001). The K time of the kaoTEG (78 + or - 18s) was not different from that of the inTEM (75 + or - 52 seconds, P = 0.60) but was longer than the K time of the exTEM (61 + or - 24 seconds, P < 0.003). The MA of the kaoTEG (71 + or - 6.5 mm) was larger than the MA of the inTEM (67 + or - 5.2 mm, P < 0.02) and almost similar to that of the exTEM (69 + or - 6.3 mm). The alpha of the kaoTEG (72 degrees + or - 4.1 degrees ) was not significantly different from that of both the inTEM (76 degrees + or - 7 degrees ) and the exTEM (79 degrees + or - 4.5 degrees ). The variability for MA and alpha was <10%. The repeatability of the R and K times was poor in both devices, whereas the repeatability of the MA and alpha was sufficient for clinical purposes. CONCLUSIONS: The TEG and RoTEM measurements demonstrated a close correlation for the MA, but the alpha did not for the R and K variables. The kaoTEG had the best agreement with the exTEM measurement. Therefore TEG and RoTEM measurements are not completely interchangeable, and the clinical interpretation of thromboelastograhic data should be used with caution.

Factors associated with phantom limb pain: a 31/2-year prospective study.

OBJECTIVE: To analyse the prevalence of phantom (limb) pain over time and to analyse factors associated with phantom (limb) pain in a prospective cohort of amputees. DESIGN: A multicentre longitudinal study. PATIENTS: One hundred and thirty-four patients scheduled for amputation were included. METHODS: Patients filled in questionnaires before amputation, and postal questionnaires six months, 1(1/2) years and 2(1/2) years to a maximum of 3(1/2) years after amputation. Preoperative assessment included patients' characteristics, date, side and level of, and reason for amputation. The follow-up questionnaires assessed the frequencies of the experienced phantom pain, prosthetic use and walking distance. The occurrence of phantom pain was defined as phantom pain a few times a day or more frequently. RESULTS: Pre- and postoperative questionnaires were available filled in by 85 amputees (33 females and 52 males). The percentage of lower limb amputees with phantom pain was the highest at six months after amputation, and of upper limb amputees at 1(1/2) years. In general, more women than men experienced phantom pain. One and a half years and 2(1/2) years after amputation the highest percentages of the lower limb amputees used their prosthesis more than 4 hours a day (66%), after that time this percentage decreased to 60%. The results of the two-level logistic regression analysis to predict phantom pain show that phantom pain was less frequently present in men (odds ratio (OR) = 0.12), in lower limb amputees (OR = 0.14) and that it decreased in due course (OR = 0.53 for 1 year). CONCLUSION: Protective factors for phantom pain are: being male, having a lower limb amputation and the time elapsed since amputation.

Monitoring stress and recovery: new insights for the prevention of injuries and illnesses in elite youth soccer players.

OBJECTIVE: Elite youth soccer players have a relatively high risk for injuries and illnesses due to increased physical and psychosocial stress. The aim of this study is to investigate how measures to monitor stress and recovery, and its analysis, provide useful information for the prevention of injuries and illnesses in elite youth soccer players. METHODS: 53 elite soccer players between 15 and 18 years of age participated in this study. To determine physical stress, soccer players registered training and match duration and session rating of perceived exertion for two competitive seasons by means of daily training logs. The Dutch version of the Recovery Stress Questionnaire for athletes (RESTQ-Sport) was administered monthly to assess the psychosocial stress-recovery state of players. The medical staff collected injury and illness data using the standardised Fédération Internationale de Football Association registration system. ORs and 95% CIs were calculated for injuries and illnesses using multinomial regression analyses. The independent measures were stress and recovery. RESULTS: During the study period, 320 injuries and 82 illnesses occurred. Multinomial regression demonstrated that physical stress was related to both injury and illness (range OR 1.01 to 2.59). Psychosocial stress and recovery were related the occurrence of illness (range OR 0.56 to 2.27). CONCLUSIONS: Injuries are related to physical stress. Physical stress and psychosocial stress and recovery are important in relation to illness. Individual monitoring of stress and recovery may provide useful information to prevent soccer players from injuries and illnesses.

In-vitro orthodontic bond strength testing: a systematic review and meta-analysis.

INTRODUCTION: The aims of this study were to systematically review the available literature regarding in-vitro orthodontic shear bond strength testing and to analyze the influence of test conditions on bond strength. METHODS: Our data sources were Embase and Medline. Relevant studies were selected based on predefined criteria. Study test conditions that might influence in-vitro bond strength were independently assessed by 2 observers. Studies reporting a minimum number of test conditions were included for meta-analysis by using a multilevel model with 3 levels, with author as the highest level, study as the second level, and specimens in the study as the lowest level. The primary outcome measure was bond strength. RESULTS: We identified 121 relevant studies, of which 24 were included in the meta-analysis. Methodologic drawbacks of the excluded studies were generally related to inadequate reporting of test conditions and specimen storage. The meta-analysis demonstrated that 3 experimental conditions significantly affect in-vitro bond strength testing. Although water storage decreased bond strength on average by 10.7 MPa, each second of photopolymerization time and each millimeter per minute of greater crosshead speed increased bond strength by 0.077 and 1.3 MPa, respectively. CONCLUSIONS: Many studies on in-vitro orthodontic bond strength fail to report test conditions that could significantly affect their outcomes.

Analyzing longitudinal data with patients in different disease states during follow-up and death as final state.

This paper considers the analysis of longitudinal data complicated by the fact that during follow-up patients can be in different disease states, such as remission, relapse or death. If both the response of interest (for example, quality of life (QOL)) and the amount of missing data depend on this disease state, ignoring the disease state will yield biased means. Death as the final state is an additional complication because no measurements after death are taken and often the outcome of interest is undefined after death. We discuss a new approach to model these types of data. In our approach the probability to be in each of the different disease states over time is estimated using multi-state models. In each different disease state, the conditional mean given the disease state is modeled directly. Generalized estimation equations are used to estimate the parameters of the conditional means, with inverse probability weights to account for unobserved responses. This approach shows the effect of the disease state on the longitudinal response. Furthermore, it yields estimates of the overall mean response over time, either conditionally on being alive or after inputting predefined values for the response after death. Graphical methods to visualize the joint distribution of disease state and response are discussed. As an example, the analysis of a Dutch randomized clinical trial for breast cancer is considered. In this study, the long-term impact on the QOL for two different chemotherapy schedules was studied with three disease states: alive without relapse, alive after relapse and death.

The impact of executive functions on verb production in patients with Parkinson's disease.

A growing number of studies suggest that language problems in Parkinson's disease (PD) are a result of executive dysfunction. To test this hypothesis we compared Dutch verb production in sentence context in a group of 28 PD patients with a control group consisting of 28 healthy participants matched for age, gender and education. All subjects were assessed on both verb production in sentence context as well as on cognitive functions relevant for sentence processing. PD patients scored lower than healthy controls on the verb production ability-scale and showed a response pattern in which performance was worse (1) in base than in derived position; (2) in present than in past tense; (3) for intransitive than in transitive verbs. For the PD group the score on the verb production ability-scale correlated significantly with set-switching and working memory. These results provide support for previous research suggesting that executive dysfunctions underlie the performance of the PD patients on verb production. It is furthermore suggested that because of failing automaticity, PD patients rely more on the cortically represented executive functions. Unfortunately, due to the disturbed intimate relation between the basal ganglia and the frontal cortex, these executive functions are also dysfunctional.

The Best Interests of the Child from Different Cultural Perspectives: Factors Influencing Judgements of the Quality of Child-Rearing Environment and Construct Validity of the Best Interests of the Child-Questionnaire (BIC-Q) in Kosovo and Albania.

Child-rearing practices and beliefs of what determines a 'good quality' of child-rearing differ across cultural contexts and more than one interpretation can be given to "a child's best interests". This study aims to examine the cultural factors that influence judgements of the quality of children's rearing environment, and the construct validity of the Best Interests of the Child-Questionnaire (BIC-Q) scale when used in the Western Balkans. In our research on migrant children who returned to Kosovo and Albania, the BIC-Q is used to assess the quality of the child-rearing environment from a local cultural perspective on child-rearing. To assess cultural differences in judgements of the child-rearing environment, we measured agreement through Cohen's kappa of BIC-Qs completed from a Western-Balkan and a Western-European perspective on child-rearing. The construct validity of the BIC-Q scale was assessed through a Mokken scale analysis. The findings show that - except for two items - there is substantial agreement between Western-European and Western-Balkan assessors regarding the direction of the judgement, i.e. if the scores on the child-rearing conditions are dichotomized (sufficient/insufficient). The judgements of the 'respect' and 'interest' conditions are sensitive to differences in the cultural or professional perspectives of the assessors. The findings of the Mokken scale analysis demonstrate a strong and reliable scale in the cultural context of the Western Balkans (H = .73; Rho = .97). Knowledge gained from using the BIC-Q to assess the living situation of returned migrant children in their countries of origin and insight into child-rearing standards provides input for the best interests of the child determination.