The Dutch Consumer Quality Index: an example of stakeholder involvement in indicator development

Background

Like in several other Western countries, in the Dutch health care system regulated competition has been introduced. In order to make this work, comparable information is required about the performance of health care providers in terms of effectiveness, safety and patient experiences. Without further coordination, external actors will all try to force health care providers to be transparent. For health care providers this might result in a situation in which they have to deliver data for several sets of indicators, defined by different actors. Therefore, in the Netherlands an effort is made to define national sets of performance indicators and related measuring instruments. In this article, the following questions are addressed, using patient experiences as an example:- When and how are stakeholders involved in the development of indicators and instruments that measure the patients' experiences with health care providers?- Does this involvement lead to indicators and instruments that match stakeholders' information needs?

Discussion

The Dutch experiences show that it is possible to implement national indicator sets and to reach consensus about what needs to be measured. Preliminary evaluations show that for health care providers and health insurers the benefits of standardization outweigh the possible loss of tailor-made information. However, it has also become clear that particular attention should be given to the participation of patient/consumer organisations.

Summary

Stakeholder involvement is complex and time-consuming. However, it is the only way to balance the information needs of all the parties that ask for and benefit from transparency, without frustrating the health care system.

     

Influence of 7% NaCl on the mechanical properties of the systemic circulation in the hypovolemic dog

We examined the effects of hypertonic saline (7%) administration during hypovolemia in the anesthetized dog on the mechanical properties of the systemic circulation that constitute the major determinants of venous return. By using a right-heart bypass preparation in which venous return from the splanchnic and non-splanchnic vascular beds was isolated and drained into a common reservoir, venous resistance, venous compliance, and blood flow distribution measurements were made during control conditions and during a period of lowered systemic blood flow (30 min at a mean arterial pressure of 50 mm Hg). These measurements were repeated following hypertonic saline administration at the reduced and control levels of systemic blood flow. Hypertonic saline administration (8 ml/kg) produced an average increase in reservoir volume of 23 ml/kg and osmolality of 25.5 mOsm/kg. Changes in venous compliance, venous resistance, and blood flow distribution in response to hypertonic saline accounted for no more than 5% of the reservoir volume increase. Furthermore, plasma volume expansion estimated from hematocrit dilution suggests that hypertonic saline does not alter unstressed vascular volume. The most likely mechanism by which hypertonic saline enhances venous return is by plasma volume expansion and not by alterations of the mechanical properties of the systemic circulation.     

Characterization of a Family With c9FTD/ALS Associated With the GGGGCC Repeat Expansion in C9ORF72

BACKGROUND The hexanucleotide repeat in the chromosome 9 open reading frame 72 (C9ORF72) gene was recently discovered as the underlying genetic cause of many families with frontotemporal dementia (FTD) and/or amyotrophic lateral sclerosis (ALS) linked to chromosome 9 (c9FTD/ALS). We report the clinical, neuropsychologic, and neuroimaging findings of a family with the C9ORF72 mutation and clinical diagnoses bridging the FTD, parkinsonism, and ALS spectrum. OBJECTIVE To characterize the antemortem characteristics of a family with c9FTD/ALS associated with the GGGGCC repeat expansion in C9ORF72. DESIGN Clinical series. SETTING Tertiary care academic medical center. PATIENTS The members of a family affected by the mutation with features of FTD and/or ALS. MAIN OUTCOME MEASURES Clinical, neuropsychologic, and neuroimaging assessments. RESULTS All 3 examined subjects had the hexanucleotide expansion detected in C9ORF72. All had personality/behavioral changes early in the course of the disease. One case had levodopa-unresponsive parkinsonism, and 1 had ALS. Magnetic resonance imaging showed symmetric bilateral frontal, temporal, insular, and cingulate atrophy. CONCLUSIONS This report highlights the clinical and neuroimaging characteristics of a family with c9FTD/ALS. Further studies are needed to better understand the phenotypical variability and the cliniconeuroimaging-neuropathologic correlations.     

Assessment of ventricular coupling with real-time cine MRI and its value to differentiate constrictive pericarditis from restrictive cardiomyopathy

The purpose of this study was to evaluate the use of respiratory-related ventricular coupling to differentiate patients with constrictive pericarditis (CP) and restrictive cardiomyopathy (RCM). In 18 histologically proven cases of CP, 6 patients with inflammatory pericarditis (IP), 15 RCM patients and 17 normal subjects, real-time cine MRI was performed in the cardiac short-axis (basal half of the ventricles) during operator-guided deep respiration. The images were analyzed for ventricular septal position and shape during early ventricular filling. Early diastolic septal inversion (I) or flattening (F) was found in all CP (I:15,F:3), and in all IP (I:2,F:4), but seldom in normals (F:1) and not in RCM. The septal abnormalities occurred at the onset of inspiration and rapidly disappeared with the next heartbeats. The amount of ventricular coupling was evaluated by quantifying the difference in the maximal septal excursion between inspiration and expiration. This parameter, normalized to the biventricular diameter, was significantly larger in CP (20.0±4.5%, P<0.0001) and IP (14.8±3.2%, P<0.0001) patients than in normals (7.0±2.4%), whereas RCM patients had a trend toward decreased excursion (4.2±1.7%, P=0.11). A cut-off value of 11.8% (mean normals +2 SD) enabled to differentiate CP patients from normals and RCM patients completely. Real-time cine MRI can easily depict increased ventricular coupling, which may be helpful to better differentiate between CP and RCM patients, especially in patients with normal or minimally thickened pericardium. The increase in coupling in IP patients is likely caused by decreased compliance of the inflamed pericardial layers.Electronic supplementary material Supplementary material is available in the online version of this article at and is accessible for authorized users.M. Francone and M. Kalantzi were supported by the European Commission with a Marie-Curie Fellowship.     

Characterization of ubiquitinated intraneuronal inclusions in a novel Belgian frontotemporal lobar degeneration family

The most common histologic feature in patients with frontotemporal lobar degeneration (FTLD) is intracellular brain inclusions of yet uncharacterized proteins that react with antiubiquitin (Ub) antibodies, but not with tau or synuclein (FTLD-U). We identified a four-generation Belgian FTLD family in which 8 patients had dominantly inherited FTLD. In one patient, we showed frontotemporal atrophy with filamentous Ub-positive intracellular inclusions in absence of tau pathology or any alterations in the levels of soluble tau. We characterized the cellular and subcellular localization and morphology of the inclusions. Ub-positive inclusions predominantly occurred within neurons (>97%), but were also observed within oligodendroglia (approximately 2%) and microglia (<1%), but not within astroglia. Regarding the subcellular localization, the intranuclear inclusions (INI) were up to approximately four-fold more frequent than the cytoplasmic inclusions, although the latter were more specific to neurons. The INIs frequently appeared spindle-shaped and 3-dimensional confocal reconstructions identified flattened, leaf-like structures. Ultrastructurally, straight 10- to 18-nm-diameter filaments constituted the spindle-shaped inclusions that occurred in close proximity to the nuclear membrane. Staining for HSP40, p62, and valosin/p97 was observed in only a minority of the inclusions. Whereas the precise nature of the protein remains elusive, characterization of such familial FTLD-U patients would be helpful in identifying a common denominator in the pathogenesis of familial and the more prevalent sporadic FTLD-U.     

Serial assessment of left ventricular morphology and function in a rodent model of ischemic cardiomyopathy

Left ventricular remodelling (LVr) occurs post myocardial infarction (MI), predisposing people to heart failure (HF). LV mechanics and morphology are important in this process. We hence sort to characterize LV mechanics and geometry in a post-MI rodent model. Thirty-two male Sprague–Dawley rats (150–200 g) sustained MI (n?=?24) or sham (Sham; n?=?8) surgery. In another six sham rats invasive blood pressure measurements were performed. Ultrasound imaging was done at baseline, and 1, 3, 7, 14, 30 and 60 days following surgery, and LV mechanics and morphology assessed. LV volumes increased with time (p?<?0.01), at a greater rate in the MI group than the Sham group (p?<?0.01). Strain was impaired in MI rats at day 1 (13.50?±?6.64 vs. 25.71?±?4.94%, p?<?0.01) and remained impaired at day 60 (14.07?±?5.37 vs. 22.98?±?5.87%, p?<?0.01). Strain rate was lower at day 1 (4.11?±?1.29 vs. 8.10?±?2.18%/s, p?<?0.01), remained lower throughout follow-up (p?<?0.01), and decreased at a greater rate in MI rats (p?<?0.01). Mean systolic (204?±?43 vs. 322?±?75 1/m, p?<?0.01) and diastolic (167?±?21 vs. 192?±?11 1/m, p?<?0.01) curvature was lower in the MI rats at day 1 post surgery and throughout follow-up (p?<?0.01). Maximum principal curvature decreased throughout time (p?<?0.01), while minimum principal curvature did not (p?=?0.86). Wall stress increased significantly after infarction in MI rats (p?<?0.01). ST-elevation myocardial infarction (STEMI) changed LV shape and contractile function. The assessment of these indices may prove useful in understanding LVr and the development of HF.