ABSTRACT
AIM: The National Hemophilia Program Coordinating Center, with the U.S. Regional Hemophilia Network conducted a national needs assessment of U.S. Hemophilia Treatment Center (HTC) patients. The objectives were to determine: (i) To what extent do patients report that they receive needed services and education; (ii) How well do the services provided meet their needs; and (iii) What are the patients' perspectives about their care. METHODS: A survey was mailed to active patients of 129 HTCs. Respondents completed the anonymous surveys on line or returned them by mail. Questions focused on management and information, access and barriers to care, coping, resources, and transition. RESULTS: Of 24 308 questionnaires mailed, 4004 (16.5%) were returned. Most respondents reported very few gaps in needed services or information and reported that services and information met their needs. Over 90% agreed or strongly agreed that care was patient-centred and rated HTC care as important or very important. Identified gaps included dietary advice, genetic testing, information on ageing, sexual health and basic needs resources. Minority respondents reported more barriers. CONCLUSION: This survey is the largest assessment of the HTC population. Respondents reported that the services and information provided by the HTCs met their needs. Quality improvement opportunities include transition and services related to ageing and sexual health. Further investigation of barriers to care for minorities is underway. Results will help develop national priorities to better serve all patients in the US. HTCs.
Subject(s)
Hemophilia A/therapy , Needs Assessment , Patient Care/economics , Surveys and Questionnaires , Adolescent , Adult , Child , Child, Preschool , Delivery of Health Care , Female , Humans , Infant , Infant, Newborn , Male , United States , Young AdultABSTRACT
Glutamic-oxaloacetic transaminase (GOT) activities in thermally processed beef samples were determined with a diagnostic test kit (no. 505P, Transaminases ALT/GPT and AST/GOT, Sigma Chemical Co.) procedure for possible use as indicators of cooking end-point temperatures (EPTs) between 71.1 and 82.2°C. GOT activity in the beef samples decreased curvilinearly with increasing EPTs. Activity was 3,450, 120, and 6 Sigma-Frankel units/ml (SFUs/ml) at 71.1, 75.6, and 82.2°C, respectively; a reduction of 99.8%. GOT values at 78.9,79.4, and 80.0°C, the critical range of EPTs in evaluating beef logs imported from South America, were 31, 17, and 14 SFUs/ml, respectively. Values within this range of temperatures differed significantly (P < 0.05); we suggest that residual GOT activity may be used as an EPT indicator for imported cooked beef products.
ABSTRACT
Bilateral occipital calcifications, occurring in celiac disease, are factors coming under a particular cerebral syndrome, which also includes epilepsy, migraine-like headache, visual troubles and mental deterioration. They seem to arise from hypofolatemia following gluten-induced enteropathy.
Subject(s)
Calcinosis/diagnostic imaging , Celiac Disease/diagnostic imaging , Dominance, Cerebral/physiology , Occipital Lobe/diagnostic imaging , Tomography, X-Ray Computed , Child , Diagnosis, Differential , Humans , Male , Sturge-Weber Syndrome/diagnostic imagingABSTRACT
Nonorganic failure to thrive (NOFTT) is characterized by physical and developmental retardation and a disturbed mother-infant relationship. This study sought to quantify differences in interactions between mother-NOFTT infant pairs and control mother-thriving infant pairs. Eleven mother-NOFTT infant dyads and 11 control mother-infant dyads were videotaped for 30 minutes through a one-way mirror. Mother and infant behaviors were evaluated for 21 behavioral categories: 12 maternal, 7 infant, and 2 mutual. Statistically significant differences were noted in five (24 percent) categories. The quantity of maternal and infant vocalizations and the responsiveness of the mother to the infant's vocal cues were strikingly reduced in the NOFTT dyads.
