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Contains fulltext : 237587.pdf (Publisher’s version ) (Open Access), INTRODUCTION: Researchers, policy-makers and healthcare professionals often stress the importance of an early dementia diagnosis. Empirical evidence, however, is scarce leading to a lack of consensus on the necessity of diagnosing dementia early. We emphasise the need for a 'timely' diagnosis, that is, one that occurs at the right moment for a person with memory complaints and his/her significant other. As the optimal timing differs between individuals, the implementation of shared decision making (SDM), preferably by the general practitioner (GP), as the start of a diagnostic trajectory, could help to determine this timely moment. SDM, however, is rarely practised with respect to dementia diagnoses. Therefore, in the context of the Shared Decision-Making regarding Dementia Diagnosis project, a patient decision aid (PtDA) for 'timely' dementia diagnosis in general practice will be developed. This protocol will describe the planned before and after evaluation of its implementation. METHODS AND ANALYSIS: In a mixed-methods pilot study, we will investigate decision-making processes and experiences regarding a diagnostic trajectory before and after the introduction of a PtDA for people with memory complaints, their significant others and their GPs. The 'before group' will receive diagnostics as usual from their GPs. The 'after group' will use the PtDA. We expect the PtDA to increase the level of SDM and to contribute to a timely and personalised diagnostic trajectory. Data will be collected using semistructured interviews, questionnaires and information retrieved from people with memory complaints' medical records. ETHICS AND DISSEMINATION: This study protocol was approved by the Medical Review Ethics Committee of the Maastricht University Medical Centre. The findings will be published in peer-reviewed international journals and presented at conferences. This study was funded by the public funded Dutch Research Institute for Care and Medical Sciences (ZonMw). TRIAL REGI

Item does not contain fulltext, BACKGROUND: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. METHODS: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. RESULTS: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. CONCLUSION: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Contains fulltext : 174265.pdf (publisher's version ) (Open Access), BACKGROUND: Much research worldwide is focussed on cost containment and better adherence to guidelines in healthcare. The research focussing on professional behaviour is often performed in a well-controlled research setting. In this study a large-scale implementation of a peer review strategy was tested on both test ordering and prescribing behaviour in primary care in the normal quality improvement setting. METHODS: We planned a cluster-RCT in existing local quality improvement collaboratives (LQICs) in primary care. The study ran from January 2008 to January 2011. LQICs were randomly assigned to one of two trial arms, with each arm receiving the same intervention of audit and feedback combined with peer review. Both arms were offered five different clinical topics and acted as blind controls for the other arm. The differences in test ordering rates and prescribing rates between both arms were analysed in an intention-to-treat pre-post analysis and a per-protocol analysis. RESULTS: Twenty-one LQIC groups, including 197 GPs working in 88 practices, entered the trial. The intention-to-treat analysis did not show a difference in the changes in test ordering or prescribing performance between intervention and control groups. The per-protocol analysis showed positive results for half of the clinical topics. The increase in total tests ordered was 3% in the intervention arm and 15% in the control arm. For prescribing the increase in prescriptions was 20% in the intervention arm and 66% in the control group. It was observed that the groups with the highest baseline test ordering and prescription volumes showed the largest improvements. CONCLUSIONS: Our study shows that the results from earlier work could not be confirmed by our attempt to implement the strategy in the field. We did not see a decrease in the volumes of tests ordered or of the drugs prescribed but were able to show a lesser increase instead. Implementing the peer review with audit and feedback proved to be

Objective: To evaluate the effectiveness of a stroke-specific follow-up care model on quality of life for stroke patients, being discharged home, and their caregivers. Design: A non-randomized, controlled trial, comparing an intervention group with a control group (usual care). Subjects: Stroke patients and their caregivers. Methods: Intervention involved 5 home visits by a stroke care coordinator over a period of 18 months, using a structured assessment tool. Outcome measures were conducted at baseline (TO) and every 6 months thereafter (T6, T12 and T18) in the domains of quality of life (primary), activities of daily living, social activities, depression, anxiety and caregiver strain. Results: The intervention group (n=62) had significantly increased its social activities after 18 months, whereas the control group (n=55) showed significantly decreased levels of social activities. In the first 6 months, levels of depression decreased significantly in caregivers of the intervention group. No differences were found for quality of life and the other outcome measures. Conclusion: The intervention was not effective in improving quality of life, but was effective in improving levels of social activities. The intervention may have focussed too much on screening for stroke-related problems and not as much on adequate follow-up care and referral.

Item does not contain fulltext, Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. Results: The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

Contains fulltext : 134953.pdf (publisher's version ) (Closed access), Objective. This study aimed to identify differences and similarities in health behavior clusters for respondents with different educational backgrounds. Methods. A total of 9449 respondents from the 2002 wave of the Dutch SMILE cohort study participated. Latent class analyses were used to identify clusters of people based on their adherence to Dutch recommendations for five important preventive health behaviors: non-smoking, alcohol use, fruit consumption, vegetable consumption and physical exercise. Results. The distribution of these groups of behaviors resulted in three clusters of people: a healthy, an unhealthy and poor nutrition cluster. This pattern was replicated in groups with low, moderate and high educational background. The high educational group scored much better on all health behaviors, whereas the lowest educational group scored the worst on the health behaviors. Conclusion. The same three patterns of health behavior can be found in different educational groups (high, moderate, low). The high educational group scored much better on all health behaviors, whereas the lowest educational group scored the worst on the health behaviors. Tailoring health education messages using a cluster-based approach may be a promising new approach to address multiple behavior change more effectively.