63 research outputs found

    Entwicklung und Validierung des BedĂŒrfnisinventars bei GedĂ€chtnisstörungen (BIG-65): Krankheitskorrelierte BedĂŒrfnisse bei Menschen mit Hirnleistungsstörungen und Demenz

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    Zusammenfassung: Hintergrund: Der Bedarf an einer systematischen Erfassung krankheitskorrelierter PatientenbedĂŒrfnisse bei Hirnleistungsstörungen und Demenz zur Auswahl optimaler Behandlungsoptionen steigt zunehmend. Es fehlt jedoch an validen Messinstrumenten, die zur Erfassung krankheitskorrelierter BedĂŒrfnisse auch bei Menschen mit Demenz eingesetzt werden können. Methode: Die Studie umfasst die Konstruktion und Validierung des BedĂŒrfnisinventars bei GedĂ€chtnisstörungen (BIG-65) zur Erfassung krankheitskorrelierter BedĂŒrfnisse. Der BIG-65 wurde theoriegeleitet entwickelt und basiert auf einer systematischen Literaturrecherche. Er wurde in einer AbklĂ€rungsstation, nach umfassender Untersuchung und Diagnosestellung, hinsichtlich seiner psychometrischen Eigenschaften an einer Gelegenheitsstichprobe (n = 83) validiert. Ergebnisse: Der BIG-65 hat 66Items und bietet neben einer breiten Auswahl an biopsychosozialen und umweltbezogenen BedĂŒrfnissen eine geeignete Struktur zur Erfassung krankheitskorrelierter BedĂŒrfnisse bei Menschen mit Hirnleistungsstörungen. Er verfĂŒgt ĂŒber eine besonders hohe AugenscheinvaliditĂ€t und eine sehr hohe Test-Retest-ReliabilitĂ€t (rtt = 0,916). Im Mittel wurden 3,5 (SD = 3,7) unabgedeckte BedĂŒrfnisse angegeben. Am hĂ€ufigsten genannt wurden: "weniger vergessen" (50%), "bessere Konzentration" (23,2%), "Informationen zur Krankheit" (20,7%), "Informationen ĂŒber Behandlungen" (17,1%) sowie "sich weniger Sorgen machen", "weniger gereizt sein", "Verbesserung der Stimmung", "Verbesserung der Orientierung" (alle 13,4%). BedĂŒrfnisprofile unterscheiden sich zwischen verschiedenen Patientengruppen mit prĂ€klinischen (subjektive und milde kognitive BeeintrĂ€chtigung) und klinischen (Demenz) Hirnleistungsstörungen. Schlussfolgerungen: Krankheitskorrelierte BedĂŒrfnisse können mit dem BIG-65 bis zu einer mittelschweren Demenz reliabel erfasst werden. Mit zunehmendem Demenzschweregrad oder einem Mini-Mental-Status <20Punkten sollte die Erfassung, z.B. mit zusĂ€tzlichen Beobachtungsmethoden des emotionalen Ausdrucks, ergĂ€nzt werden. Die Ergebnisse zeigen, dass Menschen mit Hirnleistungsstörungen individuelle Strategien zur Stabilisierung von LebensqualitĂ€t verfolgen. Neben einem objektiven Assessment von Krankheitssymptomen kann die Priorisierung optimaler Behandlungsmaßnahmen von der systematischen Erfassung krankheitskorrelierter PatientenbedĂŒrfnisse profitiere

    How Is Variety in Daily Life Related to the Expression of Personality States? An Ambulatory Assessment Study

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    People differ in the way they live their daily lives. For some people, daily life is characterized by multiple and diverse experiences, while others have more stability and routine in their lives. However, little is known about how variety in daily life relates to the expression of personality states. The present study examined within-person associations between variety in social partners, places, and activities with state expression. Data came from an ambulatory assessment study (N = 962, Mage = 25.49) with four assessments per day over a period of six consecutive days. The results of the multilevel modeling analyses suggest that variety in daily life is associated with some, but not all, state expressions. For instance, on days when participants experienced a greater variety in activities, they reported being less neurotic and conscientious, but also more agreeable. In addition, the links between all social partners, places, and activities with the expression of the state were examined simultaneously to obtain more detailed information on the multifaceted nature of situation-state expression links. We conclude that variety in daily life has both theoretical and empirical relevance for the expression of personality states

    Cross-sectional observational study of 208 patients with non-classical urea cycle disorders.

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    Urea cycle disorders (UCDs) are inherited disorders of ammonia detoxification often regarded as mainly of relevance to pediatricians. Based on an increasing number of case studies it has become obvious that a significant number of UCD patients are affected by their disease in a non-classical way: presenting outside the newborn period, following a mild course, presenting with unusual clinical features, or asymptomatic patients with only biochemical signs of a UCD. These patients are surviving into adolescence and adulthood, rendering this group of diseases clinically relevant to adult physicians as well as pediatricians. In preparation for an international workshop we collected data on all patients with non-classical UCDs treated by the participants in 20 European metabolic centres. Information was collected on a cohort of 208 patients 50% of which were ≄ 16 years old. The largest subgroup (121 patients) had X-linked ornithine transcarbamylase deficiency (OTCD) of whom 83 were female and 29% of these were asymptomatic. In index patients, there was a mean delay from first symptoms to diagnosis of 1.6 years. Cognitive impairment was present in 36% of all patients including female OTCD patients (in 31%) and those 41 patients identified presymptomatically following positive newborn screening (in 12%). In conclusion, UCD patients with non-classical clinical presentations require the interest and care of adult physicians and have a high risk of neurological complications. To improve the outcome of UCDs, a greater awareness by health professionals of the importance of hyperammonemia and UCDs, and ultimately avoidance of the still long delay to correctly diagnose the patients, is crucial

    Cross-sectional observational study of 208 patients with non-classical urea cycle disorders

    Get PDF
    Urea cycle disorders (UCDs) are inherited disorders of ammonia detoxification often regarded as mainly of relevance to pediatricians. Based on an increasing number of case studies it has become obvious that a significant number of UCD patients are affected by their disease in a non-classical way: presenting outside the newborn period, following a mild course, presenting with unusual clinical features, or asymptomatic patients with only biochemical signs of a UCD. These patients are surviving into adolescence and adulthood, rendering this group of diseases clinically relevant to adult physicians as well as pediatricians. In preparation for an international workshop we collected data on all patients with non-classical UCDs treated by the participants in 20 European metabolic centres. Information was collected on a cohort of 208 patients 50% of which were ≄ 16 years old. The largest subgroup (121 patients) had X-linked ornithine transcarbamylase deficiency (OTCD) of whom 83 were female and 29% of these were asymptomatic. In index patients, there was a mean delay from first symptoms to diagnosis of 1.6 years. Cognitive impairment was present in 36% of all patients including female OTCD patients (in 31%) and those 41 patients identified presymptomatically following positive newborn screening (in 12%). In conclusion, UCD patients with non-classical clinical presentations require the interest and care of adult physicians and have a high risk of neurological complications. To improve the outcome of UCDs, a greater awareness by health professionals of the importance of hyperammonemia and UCDs, and ultimately avoidance of the still long delay to correctly diagnose the patients, is crucial

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    Japanese theatre and neonatology: where is the link?

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