[Towards personalized child and adolescent psychiatry care by using routinely registered data from everyday clinical practice]. / Naar een gepersonaliseerde kinder- en jeugdpsychiatrie met registratiegegevens uit de dagelijkse zorgpraktijk.

BACKGROUND: Studying differences in the course and treatment effects of psychiatric disorders between subgroups of patients can provide suggestions to improve everyday clinical practice.
AIM: To illustrate how routinely registered data from child and adolescent psychiatry can be used to gain insight into differences in the development of patient groups.
METHOD: Multilevel analyses in four subgroups of youths with an autism spectrum disorder (asd; n = 1681; boys/girls, with/without comorbid psychiatric disorder) to investigate differences in the development of quality of life during the first six months of treatment.
RESULTS: Subgroups of youths with asd showed differences in development of quality of life, which can provide suggestions to establish personalized care.
CONCLUSION: Multicenter research in large samples is needed to investigate the robustness of our findings. The 'Research Data Infrastructure', containing routine outcome monitoring and electronic medical record data from more than 117.000 youths in child and adolescent psychiatry, offers a unique opportunity to perform large scale practice based research.

Understanding health care providers' reluctance to adopt a national electronic patient record: an empirical and legal analysis.

BACKGROUND: Several countries are implementing a national electronic patient record (n-EPR). Despite the assumed positive effects of n-EPRs on the efficiency, continuity, safety and quality of care, their overall adoption remains low and meets resistance from involved parties. The implementation of the Dutch n-EPR also raised considerable controversy, which eventually caused the Dutch government to stop its contribution to the national infrastructure. AIM: To explain Dutch health care providers' reluctance in adopting the n-EPR, we investigated their perceptions of problems associated with the n-EPR and their legal position regarding then-EPR. We hereby aim to provide suggestions about approaches that could promote successful implementation. METHODS: The study consisted of two parts. The empirical part of the study was conducted in three health care settings: acute care, diabetes care, and ambulatory mental health care. Two health care organisations were included per setting. Between January and June 2010, 17 stakeholders working in these organisations were interviewed to investigate health care providers' perceptions of problems associated with the n-EPR. In the legal part of the study, legal documents were analysed to study health care providers' legal position regarding the n-EPR and any associated problems. RESULTS: The respondents expressed concerns about the confidentiality and safety of information exchange and the reliability and quality of patient data in the n-EPR, and indicated that their liability in case of medical errors was not sufficiently clear. The perceived problems could partly be attributed to legal uncertainties. CONCLUSIONS: It is recommended to start the implementation of an n-EPR in limited geographical areas. This will allow health care providers to experience benefits of electronic information exchange before being asked to participate in information exchange at a larger scale. The problems that health care providers perceive in the n-EPR should be minimised. Legislation underlying the n-EPR should provide sufficient clarity about health care professionals' responsibilities and liabilities.

[Problems and needs of informal caregivers of persons with dementia: a comparison between the initial stage and subsequent stages of the illness process]. / Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces.

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.