RESUMO
BACKGROUND: The need for documentation in cartilage defects is as obvious as in other medical specialties. Cartilage defects can cause significant pain, and lead to reduced quality of life and loss of function of the affected joint. The risk of developing osteoarthritis is high. Therefore, the socioeconomic burden of cartilage defects should not be underestimated. OBJECTIVE: The objective of our study was to implement and maintain a registry of all patients undergoing surgical treatment of cartilage defects. METHODS: We designed this multicenter registry for adults whose cartilage defects of a knee, ankle, or hip joint are treated surgically. The registry consists of two parts: one for the physician and one for the patient. Data for both parts will be gathered at baseline and at 6-, 12-, 24-, 36-, 60-, and 120-month follow-ups. RESULTS: To date, a wide range of German, Swiss, and Austrian trial sites are taking part in the German Cartilage Registry, soon to be followed by further sites. More than 2124 (as of January 31, 2016) cases are already documented and the first publications have been released. CONCLUSIONS: The German Cartilage Registry addresses fundamental issues regarding the current medical care situation of patients with cartilage defects of knee, ankle, and hip joints. In addition, the registry will help to identify various procedure-specific complications, along with putative advantages and disadvantages of different chondrocyte products. It provides an expanding large-scale, unselected, standardized database for cost and care research for further retrospective studies. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00005617; https://drks-neu.uniklinik-freiburg.de/ drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00005617 (Archived by WebCite at http://www.webcitation.org/6hbFqSws0).
RESUMO
Este artigo objetivou compreender o modo como a família produz o cuidado à criança em condição crônica por adrenoleucodistrofia. Configura-se como estudo de situação, cujo corpus de análise foi composto por "cenas de cuidado" filmadas durante entrevista em profundidade realizada com os pais de criança adoecida, mantidas em acervo de imagens da pesquisa matricial. As cenas analisadas evidenciaram os esforços dos pais em produzir cuidados contínuos, permanentes e intensos à criança. No desenvolvimento deste cuidado, destacamos o estabelecimento de comunicação peculiar com a criança; os olhares de cuidado constantemente direcionados às suas necessidades; a prontidão para cuidar; e a incorporação de saberes diversos no cuidado. Compreendemos que a família desenvolve, também, cuidados do âmbito profissional, visto que, na maior parte do tempo, cuida solitariamente. Ponderamos, por fim, que os intensos esforços empreendidos pelos pais permite-lhes a modelagem de cuidado personalíssimo, capaz de abarcar a complexidade das necessidades da criança adoecida.
This article aimed to understand how the family care is for children in a chronical condition by adrenoleukodystrophy. It is set up as a situation study, whose body of analysis consists of "care routines" recorded during thorough interviews conducted with the parents of the sick child, and collected in the matrix research. The scenes analized show the parents Ì continuous care, permanent and intensive for the child. During the development of this care, we highlight the peculiar communication established with the child; the constant care directed to the child Ìs needs; the readiness of care; and the incorporation of diverse knowledge in the process. We understand that the family also develops in the professional context of the care since, most of the time, the family is alone. Finally, we ponder that the intensive efforts undertaken by parents allow them to modeling very personalized care, capable to envelop the complexities of the diseased child Ìs needs.