Participation in child and youth care

Participatie in het domein van de zorg voor jeugd ligt genuanceerd. Cliënten hechten belang aan participatie en spreken zich uit voor kwaliteitscriteria in termen van aspecten van participatie. Verschillende niveaus in participatie zijn te onderkennen, maar volledige participatie en verantwoordelijkheden zijn afhankelijk van de situatie. Het is van belang om met cliënten in de jeugdhulp te bespreken, dat de mogelijkheid bestaat om op deze hogere niveaus te participeren. Het gaat er om het potentieel van cliënten maximaal te erkennen en hen in de gelegenheid te stellen om te participeren op een zo hoog mogelijk niveau.Uit onderzoek naar participatie in de zorg voor jeugd wordt geconcludeerd dat participatie het resultaat van de zorg vergroot. Maar participatie is niet vanzelfsprekend en wordt niet altijd door professionals actief bevorderd. Voor die vergroting van de participatie zijn echter voldoende werkwijzen en instrumenten voorhanden. Zaak is die te benutten.<br/

Processes : working group report

It has often been suggested that model-driven development of user interfaces amounted to producing models of user interfaces then using automatic code generation to obtain the final result. However, this may be seen as an extreme interpretation of the model-driven approach. There are examples where that approach is successful, including mobile computing and database management systems. But in many cases automatic generation may be either impossible or may limit the quality of the final interface

Cost-effectiveness in extracorporeal life support in critically ill adults in the Netherlands

Background: Extracorporeal life support (ECLS) is used to support the cardiorespiratory function in case of severe cardiac and/or respiratory failure in critically ill patients. According to the ELSO guidelines ECLS should be considered when estimated mortality risk approximates 80%. ECLS seems an efficient therapy in terms of survival benefit, but no undisputed evidence is delivered yet. The aim of the study is to assess the health-related quality of life after ECLS treatment and its cost effectiveness. Methods: We will perform a prospective observational cohort study. All adult patients who receive ECLS in the participating centers will be included. Exclusion criteria are patients in whom the ECLS is only used to bridge a procedure (like a high risk percutaneous coronary intervention or surgery) or the absence of informed consent. Data collection includes patient characteristics and data specific for ECLS treatment. Severity of illness and mortality risk is measured as precisely as possible using measurements for the appropriate age group and organ failure. For analyses on survival patients will act as their own control as we compare the actual survival with the estimated mortality on initiation of ECLS if conservative treatment would have been continued. Survivors are asked to complete validated questionnaires on health related quality of life (EQ5D-5 L) and on medical consumption and productivity losses (iMTA/iPCQ) at 6 and 12 months. Also the health related quality of life 1 month prior to ECLS initiation will be obtained by a questionnaire, if needed provided by relatives. With an estimated overall survival of 62% 210 patients need to be recruited to make a statement on cost effectiveness for all ECLS indications. Discussion: If our hypothesis that ECLS treatment is cost-effective is confirmed by this prospective study this could lead to an even broader use of ECLS treatment

Myoclonus in comatose patients with electrographic status epilepticus after cardiac arrest:Corresponding EEG patterns, effects of treatment and outcomes

Objective: To clarify the significance of any form of myoclonus in comatose patients after cardiac arrest with rhythmic and periodic EEG patterns (RPPs) by analyzing associations between myoclonus and EEG pattern, response to anti-seizure medication and neurological outcome. Design: Post hoc analysis of the prospective randomized Treatment of ELectroencephalographic STatus Epilepticus After Cardiopulmonary Resuscitation (TELSTAR) trial. Setting: Eleven ICUs in the Netherlands and Belgium. Patients: One hundred and fifty-seven adult comatose post-cardiac arrest patients with RPPs on continuous EEG monitoring. Interventions: Anti-seizure medication vs no anti-seizure medication in addition to standard care. Measurements and Main Results: Of 157 patients, 98 (63%) had myoclonus at inclusion. Myoclonus was not associated with one specific RPP type. However, myoclonus was associated with a smaller probability of a continuous EEG background pattern (48% in patients with vs 75% without myoclonus, odds ratio (OR) 0.31; 95% confidence interval (CI) 0.16–0.64) and earlier onset of RPPs (24% vs 9% within 24 hours after cardiac arrest, OR 3.86;95% CI 1.64–9.11). Myoclonus was associated with poor outcome at three months, but not invariably so (poor neurological outcome in 96% vs 82%, p = 0.004). Anti-seizure medication did not improve outcome, regardless of myoclonus presence (6% good outcome in the intervention group vs 2% in the control group, OR 0.33; 95% CI 0.03–3.32). Conclusions: Myoclonus in comatose patients after cardiac arrest with RPPs is associated with poor outcome and discontinuous or suppressed EEG. However, presence of myoclonus does not interact with the effects of anti-seizure medication and cannot predict a poor outcome without false positives.</p

Early electroencephalography for outcome prediction of postanoxic coma:A prospective cohort study

OBJECTIVE: To provide evidence that early electroencephalography (EEG) allows for reliable prediction of poor or good outcome after cardiac arrest.METHODS: In a 5-center prospective cohort study, we included consecutive, comatose survivors of cardiac arrest. Continuous EEG recordings were started as soon as possible and continued up to 5 days. Five-minute EEG epochs were assessed by 2 reviewers, independently, at 8 predefined time points from 6 hours to 5 days after cardiac arrest, blinded for patients' actual condition, treatment, and outcome. EEG patterns were categorized as generalized suppression (&lt;10 μV), synchronous patterns with ≥50% suppression, continuous, or other. Outcome at 6 months was categorized as good (Cerebral Performance Category [CPC] = 1-2) or poor (CPC = 3-5).RESULTS: We included 850 patients, of whom 46% had a good outcome. Generalized suppression and synchronous patterns with ≥50% suppression predicted poor outcome without false positives at ≥6 hours after cardiac arrest. Their summed sensitivity was 0.47 (95% confidence interval [CI] = 0.42-0.51) at 12 hours and 0.30 (95% CI = 0.26-0.33) at 24 hours after cardiac arrest, with specificity of 1.00 (95% CI = 0.99-1.00) at both time points. At 36 hours or later, sensitivity for poor outcome was ≤0.22. Continuous EEG patterns at 12 hours predicted good outcome, with sensitivity of 0.50 (95% CI = 0.46-0.55) and specificity of 0.91 (95% CI = 0.88-0.93); at 24 hours or later, specificity for the prediction of good outcome was &lt;0.90.INTERPRETATION: EEG allows for reliable prediction of poor outcome after cardiac arrest, with maximum sensitivity in the first 24 hours. Continuous EEG patterns at 12 hours after cardiac arrest are associated with good recovery. ANN NEUROL 2019.</p