Paediatric care of the child with haemophilia.
نویسنده
چکیده
The paediatric care of children with haemophilia in developed countries should focus on the health of the child, not on the disorder. Gene therapy offers the hope of an ultimate 'cure' for the disorder, but until this is a viable proposition, patients should be given more control over their treatment, and the focus should be on 'self-monitored and self-adjusted' prophylaxis. New instruments for measuring joint function and radiographic changes, and quality of life are valuable tools in improving the treatment of paediatric care for children with haemophilia.
منابع مشابه
A Qualitative Study of Acute Poisoning related Emergencies in the Paediatric Age Group
Background: This qualitative study presents an in-depth evaluation of the contributory psycho-socio-cultural and physical-economic factors related to paediatric poisoning in rural Sri Lanka. Method: The study was conducted at paediatric wards of Anuradhapura teaching hospital (THA) over a period of two years (2012 – 2014). Main methods of data collection were participants’ narrative and focus g...
متن کاملCrossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers.
BACKGROUND Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. METHODS Semi-structured interviews with 24 young adults afte...
متن کاملA pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health-related Quality of Life.
The aim of this pilot study was to investigate the effects of the transition from paediatric to adult health care services in haemophilia patients and their parents. We compared pretransition children (n = 9) and their parents (n = 18) to posttransition patients (n = 8) and their parents (n = 21). Pre- and posttransition patients did not differ in self-rated health-related quality of life (QoL)...
متن کاملQuality of life assessment in haemophilia.
Quality of life (QoL) is a recent focus of research in haemophilia. It can be defined--in analogy to the World Health Organization (WHO) definition of health--as patient-perceived wellbeing and function in terms of physical, emotional, mental, social and behavioural life domains. The paper describes conceptual, methodological and practical foundations of QoL research in adults and children at a...
متن کاملA Retrospective Analysis of Duodenal and Jejunointestinal Atresia-Five-Year Experience from a Tertiary Care Paediatric Surgery Center in Western India.
Background: Intestinal atresia is a life-threatening problem requiring early active intervention. The aim of the study was to compare management outcomes between Duodenal-Atresia (DA) and Jejunoileal-Atresias (JIA). The secondary objective was to analyse tapering enteroplasty versus end-to-end anastomosis in JIA. Materials and Methods: Retrospective descriptive analysis of patients operated be...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید
ثبت ناماگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید
ورودعنوان ژورنال:
- Haemophilia : the official journal of the World Federation of Hemophilia
دوره 8 3 شماره
صفحات -
تاریخ انتشار 2002