It can be concluded that on the basis of empirical evidence, within the time frame of this literature search, little is known about community participation of people with ID. Many researchers did not clearly define community participation and were concerned with limited areas of community participation; research is seldom based on a theoretical framework. Most studies focus on people with mild ID, and there are few reports of the subjects' sample. However, one conclusion can consistently be drawn from the review: people with ID living in community settings participate more than people living in a segregated setting, but their participation level is still much lower than non-disabled and other disability groups.

The developmental and clinical aspects in the literature on triple X syndrome are reviewed. Prenatal diagnosis depends on karyotyping. The incidence is 1 of 1000 females. At birth, 47,XXX girls have a lower mean birth weight and a smaller head circumference. Triple X diagnosis was not suspected at birth. The maternal age seems to be increased. Toddlers with triple X syndrome show delayed language development. The youngest girls show accelerated growth until puberty. EEG abnormalities seem to be rather common. Many girls show motor-coordination problems and auditory-processing disorders are not rare. Scoliosis is probably more common in adolescent cases. The IQ levels are 20 points below that of controls, and verbal IQ is lowest. The girls struggle with low self-esteem and they need psychological, behavioural and educational support. They perform best in stable families. After leaving school they seem to feel better. In adults, premature ovarian failure seems to be more prevalent than in controls. MRIs of the brain seem to show decreased brain volumes. The 47,XXX women most often find jobs that reflect their performance abilities. Psychotic illness seems to be more prevalent in triple X adult women than in controls. Psychotic disorders respond well to psychotropic drugs. Triple X adults suffer more frequently from cyclothymic and labile personality traits.Research on triple X syndrome may yield more insight into brain and behaviour relations, developmental psychopathology, auditory-processing disorders, EEG disorders, personality and psychotic disorders, etc.

The worldwide pooled prevalence estimates are higher than assumed so far, but this was largely explained by geography and descent. Furthermore, prevalence studies varied considerably in terms of used methodology and methodological quality. The pooled estimates must therefore be interpreted with caution and for future research it is highly recommended to report methodology in a more comprehensive way. Finally, clear guidelines on assessing FASD prevalence are urgently needed, and a first step toward these guidelines is presented.

Prader-Willi syndrome (PWS) is a complex condition with many medical and psychological features. In individuals with this syndrome, causes of death were studied. Data of 27 case reports were collected. Ages at death ranged from neonatal to 68 years. None of the individuals were treated with growth hormone (GH). Most cases were not completely documented and autopsy was performed in a minority of cases only. In five cases, death was considered not to be causally related to PWS. Hypotonia with hypoventilation was noted in the babies, and acute respiratory illness with unexpected sudden death was experienced in young children with PWS. Two young children died after a short period of fever and gastroenteritis. Obesity and its complications leading to death were pronounced in the adult group. One (possibly two) adult(s) died from gastric dilatation and shock. Based on these data, some cautious conclusions can be drawn. In babies with PWS hypoventilation is a risk factor; upper airway infection may be more serious than anticipated and any other clinical features pointing to an infection should be taken very seriously. Therefore, young infants with PWS hospitalized with an upper airway infection and/or hypoventilation or gastroenteritis symptoms, should be closely monitored. Early diagnosis and prevention of overweight is a major factor in preventing early causes of death in individuals with PWS. In the adult group, weight reduction is important but difficult to manage. Sleep apnea should be recognized and treated. Pain in the upper stomach and/or vomiting should be taken as a possible sign of acute intestinal dilatation; intravenous support may be life saving.

People with mild and moderate intellectual disabilities are capable of expressing their views on end-of-life care provision, and should be asked to do so. The Nominal Group Technique presents an effective and acceptable methodology in enabling people with intellectual disabilities to generate their views.

Sex education for individuals with intellectual disabilities is important. However, our knowledge about effective methods for teaching sex education to this population is limited. We report the results of a systematic review identifying methods for sex education programs aimed at individuals with intellectual disabilities. In all, 20 articles were included that met the criteria set in terms of topic-the effectiveness of sex education programs-and population of interest-individuals with intellectual disabilities. In these articles, methods for increasing knowledge and for improving skills and attitudes were reported. However, the studies revealed that generalization of skills to real-life situations was often not achieved. There are indications that the maintenance of knowledge and skills still needs extra attention. Moreover, detailed descriptions of the program materials, program goals, and methods used in the programs were often lacking in the reports. Although there is some evidence for methods that may improve knowledge, attitudes, and skills with regard to sex education aimed at individuals with intellectual disabilities, due to the lack of detailed descriptions provided it is unclear under which conditions these methods work. We therefore suggest that authors provide additional detail about methods in future publications or in online supplements.

The Kabuki syndrome, or Niikawa-Kuroki syndrome, is a clinically recognizable syndrome of unknown etiology. Clinical findings include early hypotonia, joint laxity, developmental delay, facial dysmorphism, persistent fetal fingertip pads, cleft palate, hypodontia, lip nodules, heart defects, and a variety of other structural defects. Behavior in general is social and pleasant. In collaboration with the Dutch Kabuki Network, we evaluated the medical data of 20 individuals diagnosed with the syndrome and compared them with data from the literature. In our literature review we used convincing cases only. Frequent findings in the oral region are under-reported in the literature: apart from the cleft palate (in about 50%), hypodontia with predominantly absence of the upper lateral incisors, and a full lower lip with symmetrical nodules, or (in a minority) lip-pits are frequent findings. Also under-reported is the presence of a thickened nuchal fold during pregnancy and hydrops in the neonatal period. Clinical recognition in the neonate is difficult. Towards early puberty acute and serious weight excess has been experienced. We suggest that a cytogenetic abnormality should be ruled out in all cases. We provide further guidelines for preventive management.

Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included. Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs. Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.