Our data on 168 hip reconstructions at a mean follow-up of seven years showed significant and clinically meaningful improvements in pain intensity and frequency as well as in clinical scores and hip coverage. Analysis of potential risk factors showed only the preoperative migration percentage to have a relevant influence on outcomes.

Arthrogryposis, also termed arthrogryposis multiplex congenita, is a descriptive term for conditions with multiple congenital contractures (MCC). The etiology is extremely heterogeneous. More than 400 specific disorders have been identified so far, which may lead to or are associated with MCC and/or fetal hypo-and akinesia as a clinical sign. With improved sensitivity of prenatal ultrasound and expanding prenatal diagnostic options, clinicians are tasked with providing early detection in order to counsel the prospective parents regarding further prenatal diagnostic as well as management options. We summarize the most important knowledge to raise awareness for early detection in pregnancy. We review essential points for counseling when MCC is detected in order to provide answers to common questions, which, however, cannot replace interdisciplinary expert opinion in the individual case. Key pointsWhat's already known about this topic? � Arthrogryposis, also termed multiple congenital contractures, and fetal akinesia are often missed prenatally, but can be detected by ultrasound early when looked for.� The etiology is extremely heterogeneous. There are a number of challenges for achieving a definite diagnosis during pregnancy and appropriately counsel parents for prognosis and management. What does this review add?� This review serves as an update for prenatal providers who are charged with detecting, diagnosing and counseling on congenital contractures and/or fetal akinesia prenatally. � This article is not a substitute for interdisciplinary expert opinion, consultation and counseling in the individual patient or family. | INTRODUCTIONCongenital contractures in the newborn are not rare, ranging from 1/ 100 to 1/200 for some type of single contracture such as clubfoot and hip dislocation or multiple congenital contractures. The presence of multiple congenital contractures is generally termed arthrogryposis. Arthrogryposis, also called arthrogryposis multiplex congenita (AMC), or now referred to as multiple congenital contractures (MCC), is a descriptive term for conditions of a highly heterogeneous etiology, which may lead to or be associated with MCC as a clinical sign. 1,2 MCC, however, may have specific patterns of limb involvement and/or additional clinical signs pointing to the underlying etiology or even a specific diagnosis. The prognosis may substantially differ depending on the etiology. For pregnancy and family counseling the 798

Zusammenfassung: Studienziel war es, Qualitätsvorstellungen pflegender Angehöriger zu den Unterstützungsangeboten Angehörigenberatung, ambulante Pflege, Tagespflege und Angehörigengruppe zu erfassen. Dabei wurden zwei Gruppen einander gegenübergestellt: (1) pflegende Angehörige/zu pflegende Angehörige mit einer Demenzerkrankung (D-Gruppe); (2) pflegende Angehörige/zu pflegende Angehörige mit einer anderen Erkrankung als Demenz (V-Gruppe). Methodik: Durch einen Fragebogen, der im Kern die offenen Fragen enthielt: “Was würden Sie persönlich von einer/einem ‘guten’ ... erwarten?”, wurden die Qualitätsvorstellungen erfasst. Diese wurden mit Hilfe der zusammenfassenden und strukturierenden Inhaltsanalyse ausgewertet. Ergebnisse: In beiden Gruppen zeigte sich eine weitgehende Übereinstimmung in der Häufigkeit der Angaben zu Struktur-, Prozess- und Ergebnisqualität. Unterschiede finden sich bei den jeweiligen Angeboten in Einzelaspekten. Diskussion: Die ermittelten Qualitätsvorstellungen der Pflege-Gebenden sollten sich in den Leistungsprofilen der Angebote möglichst gut wiederfinden. Dazu bedarf es einer konsequenten Weiterentwicklung der Angebote durch die Anbieter.

Introduction: The aim of this cohort study is to assess the outcome of single-level selective dorsal rhizotomy (SDR) in children and young adults with spastic cerebral palsy (CP) treated at our institution, focusing on patient-reported outcome measures (PROMs) and quality of life (QoL) of patients and their caregivers. Methods: We included consecutive patients undergoing SDR from 2018 to 2020 at our institution. Subjective outcome was measured through PROMs, while functional outcome was measured through baseline characteristics, operative outcome, as well as short- and long-term follow-up. Furthermore, the effect of age at the time of surgery on patient/caregiver satisfaction was analyzed. Results: Seven patients (3 female, 43%) with a median age at surgery of 11.9 years (IQR 8.7-15.5) were included. All patients had a GMFCS score of at least IV before surgery. Five surgeries were palliative and two non-palliative. Based on PROMs, SDR showed very good QoL, and health-related outcome measures for both palliative and non-palliative patients. Patients/caregivers satisfaction was higher for the early subgroup (age ≤ 11) than the late subgroup (age > 11). Functional outcome showed reduced spasticity in both groups. Blood transfusions were never needed, while no CSF leak, infection, or permanent morbidity was seen. Conclusion: Based on PROMs, SDR leads to high satisfaction and improved QoL, especially if done at an early age. Further studies with larger cohorts are necessary to underline and confirm our observations.