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The uptake of predictive DNA testing in families with a hereditary disease is <50%. Current practice often relies on the proband to inform relatives about the possibility of predictive DNA testing, but not all relatives are informed adequately. To enable informed decision-making concerning predictive DNA testing, the approach used to inform at-risk relatives needs to be optimized. This study investigated the preferences of patients, relatives, and the general population from the Netherlands on how to inform relatives at risk of autosomal dominant diseases. Online surveys were sent to people with autosomal dominant neuro-, onco-, or cardiogenetic diseases and their relatives via patient organizations (n = 379), and to members of the general population via a commercial panel (n = 1,000). Attitudes of the patient and population samples generally corresponded. A majority believed that initially only first-degree relatives should be informed, following the principles of a cascade screening approach. Most participants also thought that probands and healthcare professionals (HCPs) should be involved in informing relatives, and a large proportion believed that HCPs should contact relatives directly in cases where patients are unwilling to inform, both for untreatable and treatable conditions. Participants from the patient sample were of the opinion that HCPs should actively offer support. Our findings show that both patients and HCPs should be involved in informing at-risk relatives of autosomal dominant diseases and suggest that relatives' 'right to know' was considered a dominant issue by the majority of participants. Further research is needed on how to increase proactive support in informing of at-risk relatives.
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Actitud Frente a la Salud , Familia , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Relaciones Interpersonales , Etnicidad , Femenino , Personal de Salud , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
Background: Inappropriate drug use is a frequent problem in older patients and associated with adverse clinical outcomes and an important determinant of geriatric problems. Clinical medication reviews (CMR) may reduce inappropriate drug use. Objective: The aim of this study is to investigate the effectiveness of CMR on quality of life (QoL) and geriatric problems in comparison with usual care in older patients with geriatric problems in the general practice. Methods: We performed a cluster randomised controlled trial in 22 Dutch general practices. Patients of ≥65 years were eligible if they newly presented with pre-specified geriatric symptoms in general practice and the chronic use of ≥1 prescribed drug. The intervention consisted of CMRs which were prepared by an independent expert team and discussed with the patient by the general practitioner. Primary outcomes: QoL and the presence of self-reported geriatric problems after a follow-up period of 6 months. Results: 518 patients were included. No significant differences between the intervention and control group and over time were found for QoL, geriatric problems, satisfaction with medication and self-reported medication adherence. After 6 months the percentage of solved Drug Related Problems (DRPs) was significantly higher in the intervention group compared to the control group [B 22.6 (95%CI 14.1-31.1), P < 0.001]. Conclusion: The study intervention did not influence QoL and geriatric problems. The higher percentage of solved DRPs in the intervention group did not result in effects on the patient's health. CMRs on a large scale seem not meaningful and should be reconsidered.
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Revisión de la Utilización de Medicamentos/métodos , Cumplimiento de la Medicación , Pacientes , Polifarmacia , Anciano , Femenino , Médicos Generales , Geriatría , Humanos , Prescripción Inadecuada , Masculino , Países Bajos , Calidad de VidaRESUMEN
Efficiency, or the resources spent while performing a specific task, is widely regarded as one the determinants of usability. In this study, the authors hypothesize that having a group of users perform a similar task over a prolonged period of time will lead to improvements in efficiency of that task. This study was performed in the domain of decision-supported medication reviews. Data was gathered during a randomized controlled trial. Three expert teams consisting of an independent physician and an independent pharmacist conducted 150 computerized medication reviews on patients in 13 general practices located in Amsterdam, the Netherlands. Results were analyzed with a linear mixed model. A fixed effects test on the linear mixed model showed a significant difference in the time required to conduct medication reviews over time; F(31.145) = 14.043, p < .001. The average time in minutes required to conduct medication reviews up to the first quartile was M = 20.42 (SD = 9.00), while the time from the third quartile up was M = 9.81 (SD = 6.13). This leads the authors to conclude that the amount of time users needed to perform similar tasks decreased significantly as they gained experience over time.
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Sistemas de Apoyo a Decisiones Clínicas/estadística & datos numéricos , Eficiencia Organizacional , Administración del Tratamiento Farmacológico/organización & administración , Administración del Tratamiento Farmacológico/estadística & datos numéricos , Farmacéuticos , Médicos , Medicina General , Humanos , Modelos Lineales , Países Bajos , Factores de TiempoRESUMEN
AIM: The aim of this systematic literature review is to investigate which types of patient participation in medication reviews have been practiced and what is known about the effects of patient participation within the medication review process. METHODS: A systematic literature review was performed in multiple databases using an extensive selection and quality assessment procedure. RESULTS: In total, 37 articles were included and most were assessed with a weak or moderate quality. In all studies patient participation in medication reviews was limited to the level of information giving by the patient to the professional, mainly on actual drug use. Nine studies showed limited results of effects of patient participation on the identification of drug related problems. CONCLUSIONS: The effects of patient participation are not frequently studied and poorly described in current literature. Nevertheless, involving patients can improve patients' knowledge, satisfaction and the identification of drug related problems. Patient involvement is now limited to information sharing. The profit of higher levels of patient communication and shared decision making is until now, not supported by evidence of its effectiveness.
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Quimioterapia , Participación del Paciente , Consejo , Toma de Decisiones , Práctica Clínica Basada en la Evidencia , Humanos , Difusión de la Información , Calidad de VidaRESUMEN
BACKGROUND: Inappropriate drug use has been identified as one of the most important problems affecting the quality of care in older people. Inappropriate drug use may increase the risk of the occurrence of 'geriatric giants' such as immobility, instability, incontinence and cognitive impairment. There are indications that clinical medication reviews (CMR) can reduce inappropriate drug use. However, CMRs have not yet been implemented at a large scale in primary care. An innovative medication review program in primary care will be developed which tackles the most important obstacles for a large scale implementation of CMRs. The aim of this study is to assess whether this CMR program is (cost-) effective compared with usual general practice care for older patients with geriatric symptoms with regard to quality of life and geriatric symptoms. METHODS: A cluster randomised controlled trial will be performed in 20 Dutch general practices including 500 patients. Patients of 65 years and older are eligible if they newly present with pre-specified geriatric symptoms in general practice and chronic use of at least one prescribed drug. GP practices will be stratified by practice size and randomly allocated to control (n = 10) or intervention group (n = 10). The intervention consists of CMRs which will be facilitated and prepared by an expert team consisting of a GP and a pharmacist. Primary outcome measures are patient's quality of life and the presence of self-reported geriatric symptoms during a follow-up period of 6 months. Secondary outcomes are costs of healthcare utilisation, feasibility, number of drug related problems, medication adherence and satisfaction with medication. DISCUSSION: This study is expected to add evidence on the (cost-) effectiveness of an optimally facilitated, prepared and structured CMR in comparison with usual care in older patients who present a geriatric symptom to their GP. The strength of this study is that it will be conducted in daily clinical practice. This improves the possibilities to implement the CMRs in the primary care setting on a large scale. TRIAL REGISTRATION: Netherlands Trial register: NTR4264.
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Protocolos Clínicos , Revisión de la Utilización de Medicamentos/métodos , Medicina General/métodos , Calidad de Vida , Anciano , Análisis por Conglomerados , Análisis Costo-Beneficio , Femenino , Estudios de Seguimiento , Medicina General/estadística & datos numéricos , Hogares para Ancianos , Humanos , Masculino , Países Bajos , Evaluación de Resultado en la Atención de Salud , Proyectos Piloto , Estudios RetrospectivosRESUMEN
Background and purpose: Diagnostics and treatment of developmental dysplasia of the hip (DDH) are highly variable in clinical practice. To obtain more uniform and evidence-based treatment pathways, we developed the 'Dutch guideline for DDH in children < 1 year'. This study describes recommendations for unstable and decentered hips. Materials and methods: The Appraisal of Guidelines for Research and Evaluation criteria (AGREE II) were applied. A systematic literature review was performed for six predefined guideline questions. Recommendations were developed, based on literature findings, as well as harms/benefits, patient/parent preferences, and costs (GRADE). Results: The systematic literature search resulted in 843 articles and 11 were included. Final guideline recommendations are (i) Pavlik harness is the preferred first step in the treatment of (sub) luxated hips; (ii) follow-up with ultrasound at 3-4 and 6-8 weeks; (iii) if no centered and stable hip after 6-8 weeks is present, closed reduction is indicated; (iv) if reduction is restricted by limited hip abduction, adductor tenotomy is indicated; (v) in case of open reduction, the anterior, anterolateral, or medial approach is advised, with the choice based on surgical preference and experience; (vi) after reduction (closed/open), a spica cast is advised for 12 weeks, followed by an abduction device in case of residual dysplasia. Interpretation: This study presents recommendations on the treatment of decentered DDH, based on the available literature and expert consensus, as Part 2 of the first official and national evidence-based 'Guideline for DDH in children < 1 year'. Part 1 describes the guideline sections on centered DDH in a separate article.
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Despite the high incidence of developmental dysplasia of the hip (DDH), treatment is very diverse. Therefore, the Dutch Orthopedic Society developed a clinical practice guideline with recommendations for optimal and uniform treatment of DDH. This article summarizes the guideline on centered DDH (i.e. Graf types 2A-C). The guideline development followed the criteria of Appraisal of Guidelines for Research and Evaluation II. A systematic literature review was performed to identify randomized controlled trials and comparative cohort studies including children <1 year with centered DDH. Articles were included that compared (1) treatment with observation, (2) different abduction devices, (3) follow-up frequencies, and (4) discontinuation methods. Recommendations were based on Grading Recommendations Assessment, Development, and Evaluation, which included the literature, clinical experience and consensus, patient and parent comfort, and costs. Out of 430 potentially relevant articles, 5 comparative studies were included. Final guideline recommendations were (1) initially observe 3-month-old patients with centered DDH, start abduction treatment if the hip does not normalize after 6-12 weeks; (2) prescribe a Pavlik harness to children <6 months with persisting DDH on repeated ultrasonography, consider alternative abduction devices for children >6 months; (3) assess patients every 6 weeks; and (4) discontinue the abduction device when the hip has normalized or when the child is 12 months. This paper presents a summary of part 1 of the first evidence-based guideline for treatment of centered DDH in children <1 year. Part 2 presents the guideline on decentered DDH in a separate article.
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BACKGROUND: Information on medication use and drug-related problems is important in the preparation of clinical medication reviews. Critical information can only be provided by patients themselves, but interviewing patients is time-consuming. Alternatively, patient information could be obtained with a questionnaire. OBJECTIVE: In this study the agreement between patient information on medication use and drug-related problems in older patients obtained with a questionnaire was compared with information obtained during an interview. SETTING: General practice in The Netherlands. METHOD: A questionnaire was developed to obtain information on actual medication use and drug-related problems. Two patient groups ≥65 years were selected based on general practitioner electronic medical records in nine practices; I. polypharmacy and II. ≥1 predefined general geriatric problems. Eligible patients were asked to complete the questionnaire and were interviewed afterwards. MAIN OUTCOME MEASURE: Agreement on information on medication use and drug-related problems collected with the questionnaire and interview was calculated. RESULTS: Ninety-seven patients participated. Of all medications used, 87.6 % (95 % CI 84.7-90.5) was reported identically in the questionnaire and interview. Agreement for the complete medication list was found for 45.4 % (95 % CI 35.8-55.3) of the patients. On drug-related problem level, agreement between questionnaire and interview was 75 %. Agreement tended to be lower in vulnerable patients characterized by ≥4 chronic diseases, ≥10 medications used and low health literacy. CONCLUSION: Information from a questionnaire showed reasonable agreement compared with interviewing. The patients reported more medications and drug-related problems in the interview than the questionnaire. Taking the limitations into account, a questionnaire seems a suitable tool for medication reviews that may replace an interview for most patients.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/prevención & control , Entrevistas como Asunto/normas , Errores de Medicación/prevención & control , Polifarmacia , Encuestas y Cuestionarios/normas , Factores de Edad , Anciano , Anciano de 80 o más Años , Registros Electrónicos de Salud/normas , Femenino , Humanos , Masculino , Países Bajos/epidemiología , Farmacéuticos/normasRESUMEN
BACKGROUND & AIMS: Providing sufficient protein an energy is considered crucial in the treatment of undernutrition. Still, the majority of undernourished hospital patients have a suboptimal protein and energy intake. The aim of this study was to investigate predictors for achieving protein and energy requirements on the fourth day of admission in undernourished hospitalized patients. METHODS: 830 adult undernourished patients (SNAQ ≥ 3) were retrospectively included. Intake requirements were defined as ≥1.2 g protein per kg bodyweight and ≥100% of the energy requirement based on calculated resting energy expenditure according to Harris & Benedict + 30%. Logistic regression analyses were performed to investigate predictors for achieving the requirements. RESULTS: Protein and energy intake had been recorded for 610 patients, of whom 25.6% had sufficient protein and energy intake. Protein requirements were less commonly met than energy requirements. Complete case analyses (n = 575) showed that negative predictors for achieving the protein and energy requirements were: nausea (OR = 0.18; 95%CI = 0.06-0.53), cancer (0.57; 0.35-0.93), acute infections (0.63; 0.37-1.01) and higher BMI (0.84; 0.79-0.89). Positive predictors were: a higher age (1.01; 1.00-1.03), chronic lung disease (3.76; 2.33-6.07) and receiving tube feeding (3.89; 1.56-9.73). CONCLUSION: Only one in four undernourished hospital patients meets the predefined protein and energy requirements on the fourth day of admission. Nausea, cancer, acute infections, BMI, age, chronic lung disease and tube feeding were identified as predictors for achieving protein and energy intake.