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Objectives: The MetabQoL 1.0 is the first disease-specific health related quality of life (HrQoL) questionnaire for patients with intoxication-type inherited metabolic disorders. Our aim was to assess the validity and reliability of the MetabQoL 1.0, and to investigate neuropsychiatric burden in our patient population. Methods: Data from 29 patients followed at a single center, aged between 8 and 18 years with the diagnosis of methylmalonic acidemia (MMA), propionic acidemia (PA) or isovaleric acidemia (IVA), and their parents were included. The Pediatric Quality of Life Inventory (PedsQoL) was used to evaluate the validity and reliability of MetabQoL 1.0.
Results: The MetabQoL 1.0 was shown to be valid and reliable (Cronbach's alpha: 0.64–0.9). Fourteen out of the 22 patients (63.6%) formally evaluated had neurological findings. Of note, 17 out of 20 patients (85%) had a psychiatric disorder when evaluated formally by a child and adolescent psychiatrist. The median mental scores of the MetabQoL 1.0 proxy report were significantly higher than those of the self report (p = 0.023). Patients with neonatal-onset disease had higher MetabQoL 1.0 proxy physical (p = 0.008), mental (p = 0.042), total scores (p = 0.022); and self report social (p = 0.007) and total scores (p = 0.043) than those with later onset disease.
Conclusions: This study continues to prove that the MetabQoL 1.0 is an effective tool to measure what matters in intoxication-type inherited metabolic disorders. Our results highlight the importance of clinical assessment complemented by patient reported outcomes which further expands the evaluation toolbox of inherited metabolic diseases.
This chapter is about school suspension through a social work lens. Young people like Martin require the collective to belong, to be a member of a group, to realise their social needs. This is the basic requirement of human mental and social stability. Suspension stands in opposition because it legitimises social exclusion and disregards the linkage between the individual and collective (Bunge 2003). This chapter advocates for a whole systems approach to tackle social problems and develop sustainable interventions that facilitate young peoples’ needs realisation at school.
Die Pflegebranche in Deutschland ist im Umbruch – sie muss dem zunehmenden Fachkräftemangel etwas entgegensetzen und zugleich als eine der Zukunftsbranchen die Potenziale der Technisierung und Digitalisierung heben.
Dieses Buch erfasst und analysiert die derzeitigen Trends und Herausforderungen sowohl im Bereich der praktischen Pflege als auch auf der Ebene des Pflegemanagements auf allen Führungsebenen. Die Autoren der 30 wissenschaftlichen Beiträge zeigen, wie politische Entscheider, die Organe der Selbstverwaltung und die einzelnen Unternehmen durch unterschiedliche Maßnahmen den Problemen der Pflegebranche entgegenwirken können. Es werden eine Reihe von Handlungsmöglichkeiten und Entwicklungsperspektiven für die unterschiedlichen Akteure der Pflegebranche aufgezeigt, bei denen sich der Faktor Mensch und der Faktor Maschine sinnvoll ergänzen können. Auch werden Pflegekonzepte mit in den Blick genommen, die bisher weniger bekannt sind. Ebenso werden innovative Ansätze von Start-ups und sozialen Entrepreneuren in der Pflege präsentiert.
Nicht zuletzt die Corona-Pandemie hat gezeigt, dass die Pflege eine zentrale, systemrelevante Stütze im Gesundheitswesen in Deutschland darstellt. Die jüngsten Reformen in der Pflegepolitik sind Ausdruck davon und zeigen, dass sich Entscheider auf allen Ebenen und in allen Bereichen der Pflege mit den drängenden Fragen auseinandersetzen müssen. Dazu liefert dieses Buch wichtige Impulse und Anregungen.