75 research outputs found
The Challenges of Living with and Caring for a Child or Children Affected by Neuronal Ceroid Lipofuscinosis Type 2 Disease: In-Depth Family Surveys in the United Kingdom and Germany
Limited research has investigated the challenges faced by families caring for children with neuronal ceroid lipofuscinosis type 2
(CLN2) disease. Face-to-face, mixed-method, in-depth surveys were conducted with 19 families (23 children) in the UK (n=9) and
Germany (n=10) to assess the impact of caring for children with CLN2 disease, using national wellbeing and quality of life (QoL)
measures. Primary (n=19) and secondary (n=10) caregivers, adult siblings (n=2), and child siblings (n=2) were included. Caregivers
reported reduced health-related QoL compared with age and gender-matched controls (mean utility scores 0.08 and 0.11 lower
in Germany and the UK, respectively). Hours of caregiving were significantly higher relative to that provided to a child of normal
health, with stress, back pain, and reductions in sleep being recorded. Lower life satisfaction and happiness with partners were
also reported, along with significant financial burden. Those caring for children in the late stage of disease were more greatly
impacted than those with children in the rapidly progressive stage, or who were bereaved. The results of this study make clear
the importance of emotional and practical support for caregivers and siblings coping with CLN2 disease
Modified Rodrigues Parameters: An Efficient Representation of Orientation in 3D Vision and Graphics
An ovarian mature cystic teratoma evolving in squamous cell carcinoma: A case report and review of the literature
Mature cystic teratomas (MCT), also known as dermoid cysts, are the most common ovarian germ cell tumors and the most common ovarian neoplasms in patients younger than 20 years. Malignant transformation (MT) is a rare complication of MCTs which may occur in 1–2% of the cases. Squamous cell carcinoma (SCC) is the most frequent histology arising from MCTs and its appearance depends on diverse risk factors such as patient's age, the size of the tumor and levels of serum tumor markers. Diagnosis and treatment constitute a big challenge due to the rarity and the aggressive course of this entity. Adjuvant chemotherapy has a leading role in the treatment of MCT-arising SCC, while the use of radiotherapy or chemoradiation is still under consideration. Herein, we report a case of a post-menopausal woman, presenting with mild symptoms and a large pelvic mass deriving from the left ovary occurring as dermoid cyst. Simultaneously, we review the literature stressing out the prognostic factors and the treatment options for MCT arising SCC according to traditional and new therapy-strategies
Changes in the Incidence of Central Venous Catheter Related Infection in Surgical Patients Receiving Total Parenteral Nutrition
Glycogen; its ultrastructural staining characteristics and distribution in some nematodes
Observations on the postacrosomal region and the neck membranes of rabbit spermatozoa stained en bloc with uranyl acetate
Conditions critical for optimal visualization of bacteriophage adsorbed to bacterial surfaces by scanning electron microscopy
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