People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy.

Background: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation.

Participation of people with physical disabilities: three-year trend and potential for improvement.

Objective: To provide an insight into developments in participation over the period 2008 to 2010 among Dutch people with physical disabilities and into their demands for additional participation.

Design: Trend study with additional cross-sectional survey.

Setting: Community-dwelling people with physical disabilities.

Researchers' opinions towards the communication of results of biobank research: a survey study.

Eighty Dutch investigators (response 41%) involved in biobank research responded to a web-based survey addressing communication of results of biobank research to individual participants. Questions addressed their opinion towards an obligation to communicate results and related issues such as ownership of blood samples, privacy, therapeutic relationship, costs and implications for participants. Most researchers (74%) indicated that participants only have to be informed when results have implications for treatment or prevention.

Communication of biobanks' research results: what do (potential) participants want?

The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N=1,163) and patients with asthma, rhinitis, and thrombosis (N=515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results.

Biobank research: reporting results to individual participants.

Over the last years we conducted an extensive study on the question whether and, if so, how, any results to be derived from research with large scale biobanks shoud be communicated to individual research participants. More specifically, our research intended (1) to assess the attitudes and information preferences of major stakeholders (participants/researchers), and (2) to examine whether there are any legal obligations of researchers to provide feedback to individuals. Our aim was to elaborate a general normative framework that could provide (further) guidance in this matter and be taken into account in the establishment and operation of biobanks.

Predictive genetic testing for cardiovascular diseases: impact on carrier children.

We studied the experiences of children identified by family screening who were found to be a mutation carrier for a genetic cardiovascular disease (Long QT Syndrome (LQTS), Hypertrophic Cardiomyopathy (HCM), Familial Hypercholesterolemia (FH)). We addressed the (a) manner in which they perceive their carrier status, (b) impact on their daily lives, and (c) strategy used to cope with these consequences. Children (aged 8-18) who tested positive for LQTS (n=11), HCM (n=6) or FH (n=16), and their parents participated in semi-structured audiotaped interviews.

Health-related quality of life of children with a positive carrier status for inherited cardiovascular diseases.

Familial hypercholesterolemia, hypertrophic cardiomyopathy, and long QT Syndrome are genetic cardiovascular conditions which may lead to sudden cardiac death at a young age. Preventive measures include lifestyle modifications, medications, and/or cardiac devices. Hence, identification of carrier children can protect them for the potentially life threatening consequences at a young age.