Case finding of mild cognitive impairment and dementia and subsequent care; results of a cluster RCT in primary care

Purpose Despite a call for earlier diagnosis of dementia, the diagnostic yield of case finding and its impact on the mental health of patients and relatives are unclear. This study assessed the effect of a two-component intervention of case finding and subsequent care on these outcomes. Methods In a cluster RCT we assessed whether education of family physicians (FPs; trial stage 1) resulted in more mild cognitive impairment (MCI) and dementia diagnoses among older persons in whom FPs suspected cognitive decline and whether case finding by a practice nurse and the FP (trial stage 2) added to this number of diagnoses. In addition, we assessed mental health effects of case finding and subsequent care (trial stage 2). FPs of 15 primary care practices (PCPs = clusters) judged the cognitive status of all persons ≤ 65 years. The primary outcome, new MCI and dementia diagnoses by FPs after 12 months as indicated on a list, was assessed among all persons in whom FPs suspected cognitive impairment but without a formal diagnosis of dementia. The secondary outcome, mental health of patients and their relatives, was assessed among persons consenting to participate in trial stage 2. Trial stage 1 consisted of either intervention component 1: training FPs to diagnose MCI and dementia, or control: no training. Trial stage 2 consisted of either intervention component 2: case finding of MCI and dementia and care by a trained nurse and the FP, or control: care as usual. Results Seven PCPs were randomized to the intervention; eight to the control condition. MCI or dementia was diagnosed in 42.3 (138/326) of persons in the intervention, and in 30.5 (98/321) in the control group (estimated difference GEE: 10.8, OR: 1.51, 95-CI 0.60-3.76). Among patients and relatives who consented to stage 2 of the trial (n = 145; 25), there were no differences in mental health between the intervention and control group. Conclusions We found a non-significant increase in the number of new MCI diagnoses. As we cannot exclude a clinically relevant effect, a larger study is warranted to replicate ours. Trial Registration Nederlands Trial Register NTR3389 © 2016 van den Dungen et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

Adverse Life Events: Do Home Care Clients Have Resources for Mastering Them?

Objectives: Research on life stressors and adverse life events has a long tradition. Few studies have addressed this topic in connection to very old people. Life stressors, especially major life stressors (MLSs) experienced by clients of home care services in the community have rarely been the subject of studies. Considering this gap, we investigated the prevalence of MLSs in home care clients. We examined the effects that MLSs have on their mood and health status as well as the impact of clients’ social resources on MLSs and their outcomes. Method: We used assessment data from 2,884 home care clients in six European countries. The methodological basis was the comprehensive and standardized interRAI Home Care Assessment (interRAI HC). Results: Fifteen point four percent of the sample—that consisted of women and men with an average age of 82.89 years–experienced an MLS in the last 6 months before the assessment. They were more depressed than persons without these experiences, and their health status indicated a higher level of instability and deterioration. At reassessment after 6 months, the situation changed. Despite the fact that both outcomes of the MLSs, depression and health status became worse in the reassessment-sample, home care clients without MLS were more affected by the worsening, especially that of depression. The expected buffering impact of social resources was low. Discussion: Although this study worked with limited information on MLSs, it could contribute to closing various knowledge gaps. The study shows that the MLSs represent a prevalent problem in a population of home care clients and that this problem has negative consequences for their mood and the stability of their health status. Furthermore, this research took up the situation of very old and vulnerable adults, who have previously rarely been considered in studies on major critical life events and stressors. Conclusion and Research Perspective: Future research on MLSs has to take up the issue of the time passage between the MLS and the impact on health and well-being of individuals dependent on care. It has to determine immediate as well as later consequences and identify those factors that are appropriate to reduce the MLS-effects on very old people dependent on care

Repeated Cross-Sectional Randomized Response Data Taking Design Change and Self-Protective Responses into Account

Abstract. Randomized response (RR) is an interview technique that can be used to protect the privacy of respondents if sensitive questions are posed. This paper explains how to measure change in time if a binary RR question is posed at several time points. In cross-sectional research settings, new insights often gradually emerge. In our setting, a switch to another RR procedure necessitates the development of a trend model that estimates the effect of the covariate time if the dependent variable is measured by different RR designs. We also demonstrate that it is possible to deal with self-protective responses, thus accommodating our trend model with the latest developments in RR data analysis. Keywords: linear trend, longitudinal data, misclassification, randomized response, repeated cross-sections, self-protective responses Randomized response (RR) is an interview technique that can be used if sensitive questions are posed and respondents are reluctant to answer directly In addition to the RR setting, misclassification probabilities occur in several other fields of research. The one most closely related to RR is the postrandomization method (PRAM, Kooiman, Willenborg, & Gouweleeuw, 1997) that misclassifies values of categorical variables using a computerized process after the data are collected to protect the respondents' privacy. PRAM uses RR after the data collection. Misclassification also plays a role in medicine and epidemiology with the probabilities correctly classified as a case (sensitivity) or noncase (specificity), see This paper proposes a model to measure changes in time whenever RR is used to pose sensitive questions at several time points cross-sectionally. The model is illustrated with data from a Dutch repeated cross-sectional study on noncompliance to rules regarding social benefits. Data are collected every 2 years since 2000 and given that measures to prevent regulatory noncompliance are intensified during this period, the question arises as to whether the prevalence of regulatory noncompliance changes over the years and how the change can be modeled. Considering time a covariate, we propose a method to measure the effect of this covariate if the dependent variable is measured by RR. Several aspects of the cross-sectional study at hand make it impossible to use standard analysis methods and necessitate a new approach in the analysis of RR data to deal with research questions of this type. Firstly, the fact that RR variables represent misclassified responses on categorical variables precludes the use of, for example, the linear logit model (Agresti, 2002, p. 180), to test for a linear trend. Using the framework o

Burden of illness of Pompe disease in patients only receiving supportive care

Background: Pompe disease is an orphan disease for which enzyme replacement therapy (ERT) recently became available. This study aims to estimate all relevant aspects of burden of illness-societal costs, use of home care and informal care, productivity losses, and losses in health-related quality of life (HRQoL)-for adult Pompe patients only receiving supportive care. Methods: We collected data on all relevant aspects of burden of illness via a questionnaire. We applied a societal perspective in calculating costs. The EQ-5D was used to estimate HRQoL. Results: Eighty adult patients (87% of the total Dutch adult Pompe population) completed a questionnaire. Disease severity ranged from mild to severe. Total annual costs were estimated at €22,475 (range €0-169,539) per adult Pompe patient. Patients on average received 8 h of home care and 19 h of informal care per week. Eighty-five percent of the patients received informal care from one or more caregivers; 40% had stopped working due to their disease; another 20% had reduced their working hours. HRQoL for Pompe patients who only received supportive care was estimated at 0.72, 17% lower than the Dutch population at large. Conclusions: Adult Pompe disease is associated with a considerable burden of illness at both the societal and patient levels. The disease leads to substantial costs and dependency on medical devices, home care, and informal care, and has a high impact on the patient's social network. In addition, patients are limited in their ability to work and have significantly reduced HRQoL

PO-0847: Pain response and quality of life with survival post palliative radiotherapy for bone metastases

Biological, physical and clinical aspects of cancer treatment with ionising radiatio

Facial-muscle weakness, speech disorders and dysphagia are common in patients with classic infantile Pompe disease treated with enzyme therapy

Classic infantile Pompe disease is an inherited generalized glycogen storage disorder caused by deficiency of lysosomal acid α-glucosidase. If left untreated, patients die before one year of age. Although enzyme-replacement therapy (ERT) has significantly prolonged lifespan, it has also revealed new aspects of the disease. For up to 11 years, we investigated the frequency and consequences of facial-muscle weakness, speech disorders and dysphagia in long-term survivors. Sequential photographs were used to determine the timing and severity of facial-muscle weakness. Using standardized articulation tests and fibreoptic endoscopic evaluation of swallowing, we investigated speech and swallowing function in a subset of patients. This study included 11 patients with classic infantile Pompe disease. Median age at the start of ERT was 2.4 months (range 0.1-8.3 months), and median age at the end of the study was 4.3 years (range 7.7 months −12.2 years). All patients developed facial-muscle weakness before the age of 15 months. Speech was studied in four patients. Articulation was disordered, with hypernasal resonance and reduced speech intelligibility in all four. Swallowing function was studied in six patients, the most important findings being ineffective swallowing with residues of food (5/6), penetration or aspiration (3/6), and reduced pharyngeal and/or laryngeal sensibility (2/6). We conclude that facial-muscle weakness, speech disorders and dysphagia are common in long-term survivors receiving ERT for classic infantile Pompe disease. To improve speech and reduce the risk for aspiration, early treatment by a speech therapist and regular swallowing assessments are recommended