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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.
In Bewegung kommen
(2023)
Armut im Blick?
(2023)
Der Einsatz von Robotik im Pflegekontext wird kontrovers diskutiert und löst unterschiedliche Assoziationen aus. In diesem Beitrag stellen wir Ergebnisse aus einer schriftlichen Befragung bei Pflegekräften aus Deutschland vor. Es wird aufgezeigt, für welche Funktionen und Aufgaben sich Pflegekräfte den Einsatz von Roboter vorstellen können und wo gegensätzliche Einstellungen gegenüber Robotern bestehen. Ein Fallbeispiel illustriert ein mögliches Anwendungsfeld. Mit den reflexiven Fragen laden wir die:den Lesenden ein, sich selbst mit der Idee Roboter als Alltagshelfer für ältere Menschen auseinanderzusetzen.
Bachground: Worldwide, more than 79.5 million people are forcibly displaced, including a significant number of migrant and refugee families with children. Migration and refugeedom affect these families in different dimensions, such as mental, physical and spiritual health. Identifying family needs and enhancing parenting skills can improve family cohesion and health, as well as smooth integration into the host country. This review is part of the Erasmus+ funded project- IENE 8 (Intercultural Education for Nurses in Europe) aiming at empowering migrant and refugee families regarding parenting skills.
Methods: This was a scoping review of literature. The IENE 8 partner countries (Cyprus, Germany, Greece, Italy, Romania, and United Kingdom) searched for peer reviewed papers, grey literature and mass media reports at international, European and national level. The time period for the search of scientific and grey literature was between2013-2018, and for mass media, it was between 2016 and 2018. Results: 124 relevant sources were identified. They included 33 Peer reviewed papers, 47 Grey literature documents and 44 mass media reports. This revealed the importance of understanding the needs of migrant families with children. Conclusion: It is evident from the literature that there is a need to support refugee parents to adjust their existing skill and to empower them to develop new ones. Healthcare and social services professionals have an essential role in improving the refugees' parenting skills. This can be done by developing and implementing family-centered and culturally-sensitive intervention programs.