Berg, B. van den

Rate of progression and predictive factors for pulmonary outcome in children and adults with Pompe disease (Article)

2011-09-01T00:00:00Z

Respiratory insufficiency is a serious threat to patients with Pompe disease, a neuromuscular disorder caused by lysosomal acid alpha-glucosidase deficiency. Innovative therapeutic options which may stabilize pulmonary function have recently become available. We therefore determined proportion and severity of pulmonary involvement in patients with Pompe disease, the rate of progression of pulmonary dysfunction, and predictive factors for poor respiratory outcome.In a single-center, prospective, cohort study, we measured vital capacity (VC) in sitting and supine positions, as well as maximum inspiratory (MIP) and expiratory (MEP) mouth pressures, and end expiratory CO2in 17 children and 75 adults with Pompe disease (mean age 42.7years, range 5-76years).Seventy-four percent of all patients, including 53% of the children, had some degree of respiratory dysfunction. Thirty-eight percent had obvious diaphragmatic weakness.Males appeared to have more severe pulmonary involvement than females: at a group level, their mean VC was significantly lower than that of females (p < 0.001), they used mechanical ventilation more often than females (p = 0.042) and the decline over the course of the disease was significantly different between males and females (p = 0.003). Apart from male gender, severe skeletal muscle weakness and long disease duration were the most important predictors of poor respiratory status. During follow-up (average 1.6. years, range 0.5-4.2. years), three patients became ventilator dependent. Annually, there were average decreases in VC in upright position of 0.9% points (p = 0.09), VC in supine position of 1.2% points (p = 0.049), MIP of 3.2% points (p = 0.018) and MEP of 3.8% points (p < 0.01).We conclude that pulmonary dysfunction in Pompe disease is much more common than generally thought. Males, patients with severe muscle weakness, and those with advanced disease duration seem most at risk.

The value of informal care - A further investigation of the feasibility of contingent valuation in informal caregivers (Article)

2010-07-01T00:00:00Z

Including informal care in economic evaluations is increasingly advocated but problematic. We investigated three well-known concerns regarding contingent valuation (CV): (1) the item non-response of CV values, (2) the sensitivity of CV values to the individual circumstances of caring, and (3) the choice of valuation method by comparing willingness-to-pay (WTP) and willingness-to-accept (WTA) values for a hypothetical marginal change in hours of informal care currently provided. The study sample consisted of 1453 caregivers and 787 care recipients. Of the caregivers, 603 caregivers (41.5%) provided both WTP and WTA values, 983 (67.7%) provided at least one. Determinants of non-response were dependent on the valuation method; primary determinants were education and satisfaction with amount of informal care provided. Caregivers' mean WTP (WTA) for reducing (increasing) informal care by 1 h was €9.13 (10.52). Care recipients' mean WTA (WTP) for reducing (increasing) informal care by 1 h was €8.88 (€6.85). Values were associated with a variety of characteristics of the caregiving situation; explanatory variables differed between WTP and WTA valuations. The differences between WTP and WTA valuations were small. Based on sensitivity CV appears to be a useful method to value informal care for use in economic evalations, non-response, however, remains a matter of concern. Copyright

Economic valuation of informal care: Conjoint analysis applied in a heterogeneous population of informal caregivers (Article)

2008-12-01T00:00:00Z

Objectives: This article reports the results of the application of conjoint analysis (CA) to derive a monetary value of informal care. Compared with normally recommended valuation methods such as the opportunity cost method and proxy good method, a valuation elicited through a CA might be more sensitive to the heterogeneity and dynamics of informal care. Methods: We developed a questionnaire and conducted a survey in which informal caregivers were asked to rate four different hypothetical informal caregiving situations (reflecting different combinations of care hours, care tasks, and monetary compensation). They were also asked to rate their current informal care situation compared with the four hypothetical situations. Data were obtained from postal questionnaires. These questionnaires were sent through regional support centres for informal caregivers of care recipients with various health problems. A total of 865 informal caregivers from this heterogeneous population returned a completed survey. Results: Informal caregivers require an increase of 81% in their hourly compensation for providing 21 instead of 7 hours informal care per week. This implies a compensation of €12.36 per hour at a mean hypothetical compensation in the presented scenarios. We also found that an informal caregiver's current caregiving situation and other background characteristics were associated with the scenario ratings. Conclusions: We conclude that a CA is a promising alternative for existing methods to determine a monetary value of informal care and encourage more experiments in this area.

Fatal oseltamivir-resistant influenza virus infection (Article)

2008-09-04T00:00:00Z

Preferences and choices for care and health insurance (Article)

2008-06-01T00:00:00Z

Legislation that came into effect in 2006 has dramatically altered the health insurance system in the Netherlands, placing greater emphasis on consumer choice and competition among insurers. The potential for such competition depends largely on consumer preferences for price and quality of service by insurers and quality of affiliated providers. This study provides initial evidence on the preferences of Dutch consumers and how they view trade-offs between various aspects of health insurance product design. A key feature of the analysis is that we compare the responses of high and low risk individuals, where risk is defined by the presence of a costly chronic condition. This contrast is critically important for understanding incentives facing insurers and for identifying potential unanticipated consequences of market competition. The results from our conjoint analysis suggest that not only high risk but also low risk individuals are willing to pay substantially more for insurance products that can be shown to provide better health outcomes. This suggests that insurance products that are more expensive and provide better quality of care may also attract low risk individuals. Therefore, development and dissemination of good, reliable and understandable health plan performance indicators may effectively reduce the problem of adverse selection.

Ficoll-separated mononuclear cells from sepsis patients are contaminated with granulocytes (Article)

2008-05-01T00:00:00Z

Objective: To determine the cell content and purity of Ficoll-separated peripheral blood mononuclear cells and granulocyte isolates in sepsis patients compared to healthy controls. Design and setting: Prospective study in the adult and pediatric intensive care departments of the Erasmus University Medical Center in the Netherlands. Patients: Three sepsis patients (two adults, one child) and four healthy controls. Measurements and results: Blood leukocytes were separated by Ficoll into an interface and a bottom fraction. The cell content and purity was analyzed by cytospin and flow-cytometric immunofluorescence. In sepsis patients, the interface consisted of 11-52% mononuclear cells only, due to high contamination with granulocytes (48-89%). This was in contrast to a high proportion of mononuclear cells (88-100%) in healthy controls. The bottom fraction showed a cell purity of ≥92% polymorphonuclear granulocytes in sepsis patients as well as in healthy controls. Conclusions: Ficoll-separated leukocytes of sepsis patients are not suitable for studying mononuclear cells but can be used for studying granulocytes with high purity. The mononuclear cell fraction is highly contaminated with granulocytes. Additional separation techniques are necessary to obtain a pure cell fraction.

An overview of methods and applications to value informal care in economic evaluations of healthcare (Article)

2008-04-01T00:00:00Z

This paper compares several applied valuation methods for including informal care in economic evaluations of healthcare programmes: the proxy good method; the opportunity cost method; the contingent valuation method (CVM); conjoint measurement (CM); and valuation of health effects in terms of health-related quality of life (HR-QOL) and well-being. The comparison focuses on three questions: what outcome measures are available for including informal care in economic evaluations of healthcare programmes; whether these measures are compatible with the common types of economic evaluation; and, when applying these measures, whether all relevant aspects of informal care are incorporated. All types of economic evaluation can incorporate a monetary value of informal care (using the opportunity cost method, the proxy good method, CVM and CM) on the cost side of an analysis, but only when the relevant aspects of time costs have been valued. On the effect side of a cost-effectiveness or cost-utility analysis, the health effects (for the patient and/or caregiver) measured in natural units or QALYs can be combined with cost estimates based on the opportunity cost method or the proxy good method. One should be careful when incorporating CVM and CM in cost-minimization, cost-effectiveness and cost-utility analyses, as the health effects of patients receiving informal care and the carers themselves may also have been valued separately. One should determine whether the caregiver valuation exercise allows combination with other valuation techniques. In cost-benefit analyses, CVM and CM appear to be the best tools for the valuation of informal care. When researchers decide to use the well-being method, we recommend applying it in a cost-benefit analysis framework. This method values overall QOL (happiness); hence it is broader than just HR-QOL, which complicates inclusion in traditional health economic evaluations that normally define outcomes more narrowly. Using broader, non-monetary valuation techniques, such as the CarerQol instrument, requires a broader evaluation framework than cost-effectiveness/cost-utility analysis, such as cost-consequence or multicriteria analysis.

The Economic Value of Informal Care: A Study of Informal Caregivers' and Patients' Willingness to Pay and Willingness to Accept for Informal Care (Article)

2005-04-01T00:00:00Z

We provide a new test of the feasibility of using contingent valuation to value informal care. We start with a theoretical model of informal caregiving and derive that willingness to pay depends positively on wealth and negatively on own health, whereas the effect of other's health is sign-ambiguous. These predictions are tested in two new data sets on patients' and caregivers' willingness to pay (WTP) and willingness to accept (WTA) for informal care. The data are generally consistent with the theoretical predictions: wealth generally has a positive impact and own health a negative impact. Other's health has a mixed effect. We find only small differences between WTP and WTA. Our findings suggest that contingent valuation may be a useful technique to value informal care in economic evaluations of health care.

Informal care: an economic approach (Doctoral Thesis)

2005-01-14T00:00:00Z

In the 1970s and 1980s health care expenditures increased excessively, both in absolute numbers and as a share of the gross domestic product (GDP). Table 1.1 shows the total expenditures on health care as percentage of the GDP in thirteen OECD countries.

Intoxication with therapeutic and illicit drug substances and hospital admission to a Dutch university hospital (Article)

2003-01-01T00:00:00Z

BACKGROUND: This article describes the retrospective analysis of the patients who presented with a drug-related intoxication to the emergency department of the Erasmus Medical Centre in 2000. METHODS: Data were collected from the emergency department's electronic database and the medical charts of the patients. RESULTS: A total of 243 patients were seen with a drug-related intoxication caused by ingestion of one or more medical substances, drugs of abuse (DOA) or combinations with alcohol. Mono-intoxication occurred in 58% of the patients, predominantly caused by DOA (56 patients), analgesics (17 patients) or benzodiazepines (14 patients). Benzodiazepines (55 patients), analgesics (42 patients), alcohol (42 patients), DOA (40 patients) and antidepressants (23 patients) were predominant in combined intoxications. More than half of the patients (142) were discharged after being treated in the emergency department and 80 patients were admitted to the wards. Eighteen patients were admitted elsewhere and three patients were lost to follow-up. Eventually, 70 patients were discharged after having been admitted, five patients were admitted to other institutions, two patients died and three patients were lost to follow-up. CONCLUSIONS: DOA, benzodiazepines, analgesics, alcohol and antidepressants accounted for approximately 65% of the drug-related intoxications in 2000 and in a third of the presenting patients, toxicity was such that admission to the wards was warranted.

Een situatieschets van mantelzorgers bereikt via leden van de vereniging van budgethouders Per Saldo (Research Paper)

2003-01-01T00:00:00Z

Een persoonsgebonden budget (PgB) is een som geld waarmee mensen die hulp en begeleiding nodig hebben als gevolg van een aandoening, deze zorg naar eigen inzicht kunnen inkopen. Het PgB wordt gezien als een belangrijk instrument om verder vorm te geven aan vraagsturing in de Nederlandse gezondheidszorg. Momenteel hebben ruim 35.000 mensen een PgB. Over mensen met een PgB, budgethouders, en hun mantelzorgers is tot op heden echter weinig bekend. Daarom heeft de Erasmus Universiteit Rotterdam, in samenwerking met het Rijksinstituut voor Volksgezondheid en Milieu en de vereniging van budgethouders Per Saldo, een onderzoek onder budgethouders en hun mantelzorgers uitgevoerd. Dit is het eerste onderzoek in Nederland van deze omvang onder budgethouders, hun primaire mantelzorger en het gebruik van het PgB in verschillende zorgsituaties. In totaal werkten 609 budgethouders en 522 mantelzorgers verspreid over het hele land mee aan dit onderzoek, dat werd uitgevoerd tussen december 2001 en februari 2002. Twee op de drie budgethouders geeft aan dat ze al voor de aanvraag van het PgB wisten op welke manier ze hulp zouden inschakelen. De belangrijkste reden om een PgB aan te vragen was dan ook de wens om de benodigde zorg naar eigen inzicht in te richten (58%). Budgethouders zijn gemiddeld voor 56,5 uur per maand geïndiceerd en ontvangen een bedrag van 1308 Euro per maand. Naast het inhuren van freelancers, iemand van de reguliere of commerciële thuiszorg, gebruiken veel budgethouders een deel van het PgB om hun mantelzorger te vergoeden voor (een deel van) de zorgtaken die hij of zij verricht en voor eventuele reiskosten.

Mantelzorg in Nederland (Research Paper)

2002-01-01T00:00:00Z

Mantelzorg is een belangrijke vorm van zorg. Nederland telt circa 1,5 miljoen mantelzorgers. De Erasmus Universiteit heeft samen met het Rijksinstituut voor Volksgezondheid en Milieu en de Steunpunten Mantelzorg een onderzoek naar mantelzorg uitgevoerd. In totaal werkten 950 mantelzorgers en 552 zorgvragers mee aan dit onderzoek. Een mantelzorger is vaak een gehuwde vrouw, en zorgt meestal thuis voor een familielid. Een aanzienlijk deel heeft thuiswonende kinderen. De meeste mantelzorgers zijn gepensioneerd of huisvrouw/-man. De zorgvragers zijn meestal ouder dan 60 jaar en gehuwd, één op de vijf is weduwe of weduwnaar. Ongeveer de helft van de zorgvragers is met pensioen, één op de vier is arbeidsongeschikt. Zorgvragers zijn als gevolg van hun gebrekkige gezondheid beperkt in hun activiteit en hebben dus ondersteuning nodig. Hiervoor zijn ze afhankelijk van mantelzorgers, thuiszorg en particuliere hulp. Ruim één op de drie zorgvragers is volledig afhankelijk van mantelzorg, en ongeveer één op de vijf zelfs van één enkele mantelzorger. Ongeveer de helft van de zorgvragers heeft thuiszorg. Daarnaast heeft één op de vijf zorgvragers een particuliere hulp, voor gemiddeld acht uur per week. Voor veel mantelzorgers legt de zorgtaak beslag op een belangrijk deel van hun leven. Ze besteden er gemiddeld zeven uur per dag aan, en vaak zeven dagen per week. De belangrijkste zorgtaak is ondersteuning bij huishoudelijke activiteiten, zoals boodschappen doen, het klaarmaken van eten en drinken, schoonmaken van het huis, en de was. Daarnaast zijn sociale ondersteuning (zoals praten en troosten) en hulp bij contacten met de gezondheidszorg, (zoals bezoek aan arts of ziekenhuis), belangrijk. Eén op de vier mantelzorgers combineert de zorgtaak met betaald werk. Ongeveer 15% van de mantelzorgers is geheel of gedeeltelijk gestopt met werken om zorg te kunnen (blijven) geven. Voor veel mantelzorgers is de zorg een grote belasting. Maar liefst twee op de vijf mantelzorgers geeft aan dat de zorg (veel te) zwaar is. Volgens een objectieve maatstaf is twee op de drie mantelzorgers zelfs aanzienlijk belast. Maar verlenen van zorg geeft veel mantelzorgers ook voldoening. De helft van de mantelzorgers geeft aan de zorgtaak liever niet aan iemand anders over te willen dragen. Mantelzorgers en zorgvragers geven hun zorgsituatie gemiddeld een cijfer 6.2, oftewel, net voldoende. De mantelzorgers die aan dit onderzoek hebben meegewerkt hebben over het algemeen een goede gezondheid, zijn tevreden over hun inkomen, en voelen zich tamelijk gelukkig. Er bestaan echter grote verschillen tussen mantelzorgers. Zo kan men stellen: veel mantelzorgers hebben weinig problemen met hun mantelzorgtaak, maar een kleine groep heeft grote problemen.

Informal care in the Netherlands. A situational sketch of informal caregivers reached via Informal Care Centres (Research Paper)

2002-01-01T00:00:00Z

Informal care is a very important form of care. There are approximately 1.5 million informal caregivers in the Netherlands. Despite this large number, little is known about those providing this important service. To address this lack of knowledge, Erasmus University Rotterdam, in collaboration with the National Institute of Public Health and the Environment (RIVM) and the regional Informal Care Centres, carried out a study of informal care in the Netherlands. This is the first study of any size in the Netherlands to survey both the providers and recipients of informal care. A total of 950 informal caregivers took part in the study, which was carried out between November 2001 and February 2002. This report presents some first results.

Controlled expiration in mechanically-ventilated patients with chronic obstructive pulmonary disease (COPD) (Article)

1997-01-01T00:00:00Z

In patients with severe chronic obstructive pulmonary disease (COPD), lung emptying may be affected by flow limitation. We tested the hypothesis that the airway compression leading to flow limitation can be counteracted by controlling the expiratory flow. The effects of an external resistor on lung emptying were studied in six patients with COPD, who were mechanically ventilated whilst sedated and paralysed. Respiratory mechanics were obtained during ventilatory support with and without the resistor. Airway compression was assessed using the interruptor method. For the study, a turbulent resistor was applied with the highest resistance level that did not increase the end-expiratory lung volume. At this resistance level, external positive end-expiratory pressure (PEEP) was generated in all patients. As total PEEP levels remained unchanged at both settings during the controlled expiration, the levels of intrinsic PEEP were significantly decreased from 0.96+/-0.30 to 0.53+/-0.19 kPa (mean+/-SD). Comparison of the expiratory flow-volume curves at both settings revealed that, during the controlled expiration, the flows were significantly decreased during the first 40% of the expired volume and significantly increased during the last 60%. As the end-expiratory lung volumes remained unchanged during both settings, these increments in flow indicated a decrease in effective resistance. Airway compression was observed during unimpeded expirations in all patients using the interruptor method. During the application of the resistor, airway compression was no longer detectable. In patients with chronic obstructive pulmonary disease receiving ventilatory support, the application of an external resistor could decrease effective expiratory resistance by counteracting airway compression, without increments in end-expiratory lung volume.

Pulmonary hypertension after transjugular intrahepatic portosystemic shunt (TIPS) (Article)

1996-01-01T00:00:00Z

We reported the case of a patient in whom severe, and ultimately fatal, pulmonary hypertension developed 1.5 yrs after transjugular intrahepatic portosystemic shunt (TIPS). Pulmonary artery pressures were not affected by 100% oxygen, prostacyclin or nifedipine. Postmortem examinations showed pulmonary and vascular abnormalities typical of pulmonary hypertension. Pulmonary artery pressures should be measured in each patient with otherwise not readily explained dyspnoea following transjugular intrahepatic portosystemic shunt.