Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excellent quality of life and an even greater life expectancy than was seen previously. To allow high quality care to be delivered throughout Europe, a landmark document was published in 2005 that sets standards of care. Our current document builds on this work, setting standards for best practice in key aspects of CF care. The objective of our document is to give a broad overview of the standards expected for screening, diagnosis, pre-emptive treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support. For comprehensive details of clinical care of CF, references to the most up to date European Consensus Statements, Guidelines or Position Papers are provided in Table 1. We hope that this best practice document will be useful to clinical teams both in countries where CF care is developing and those with established CF centres.
Interview data from parents of 201 children under age 7 years with severe feeding and eating difficulties were analysed to describe features in the child's and parents' experiences that may have contributed to the development of the eating problem. Prematurity and low birth weight, distress during feeding in the first six months of life, and regular or frequent vomiting were common findings in the histories of the children. Aversive experiences during feeding may be the basis for early childhood eating difficulties. (Arch Dis Child 1996;75:304-308) Keywords: feeding, eating, behaviour.Feeding and eating difficulties in young children are common and it is important to recognise these at an early age and provide support for parents to help them cope with their child's eating.Attempts to classify these eating difficulties have tended to oversimplify the issues and focus on 'organic' and 'non-organic' failure to thrive. Several studies have identified serious behavioural eating difficulties in young children who have experienced ill health or tube feeding early in life.' Children can also be inaccurately diagnosed as having 'non-organic failure to thrive' when they have undiagnosed oral sensorimotor impairment from birth or early in life.8Young children and their parents may require psychological help to overcome eating difficulties that have become established during a period of medical or surgical treatment and which may continue long after the initial event has resolved.A psychological treatment programme has been established in Great Ormond Street Hospital for Children. A semistructured diagnostic interview was designed to collect standard information to aid classification and understanding of those referred and to identify any predictors of severe behavioural feeding problems. Methods SUBJECTSThis descriptive analysis is based on 201 patients seen over five years. The criteria for inclusion were that the child should be aged under 7 years and have had a severe eating difficulty for at least six months. Half of the sample were referred from within the hospital (51 %) while the rest were referred from paediatricians, general practitioners, and community health services. MEASURESEach child was assessed from a semistructured interview with parents by trained assistant psychologists who had either watched videos of previous interviews or sat in on interviews with other psychologists. Ten assistant psychologists or clinical staff conducted the interviews. No reliability measures were obtained. Uncertainties about any of the interviews were clarified during review between the parents and the senior author. In addition, a video was taken of parents and child eating lunch together in the unit, several questionnaires were given to the parents, and each child's height and weight were measured. We present here only the interview data obtained from questions which were designed with immediate scoring on predefined multiple choice and yes/no answers (available from the authors). Areas covered included family demog...
BackgroundThe impact on health related quality of life (HRQL) has been well studied in children with Immunoglobulin E (IgE)-mediated food allergy. However limited data exists on related quality of life (QOL) of families who have a child suffering from food protein induced non-IgE mediated gastrointestinal allergies. We aimed to establish the QOL of families with children at the beginning of following an elimination diet for non-IgE mediated gastrointestinal food allergies.MethodsA prospective, observational study was performed. Parents of children aged 4 weeks–16 years who improved after 4–8 weeks of following an elimination diet for suspected non-IgE mediated allergies were included. The Family Impact Module (FIM) of the Pediatric Quality of Life (PedsQL™) was used and we compared our data to two historical cohorts: one with sickle cell disease and another with intestinal failure.ResultsOne hundred and twenty three children with a median age of 20 months were included (84 boys). The total FIM Score was 57.43 (SD 22.27) and particularly low for daily activities and worry. Factors that impacted significantly included age (p < 0.0001), number of foods excluded (p = 0.008), symptom severity (p = 0.041) and chronic nasal congestion (p = 0.012). Children with non-IgE mediated food allergies had worse scores in all domains (p < 0.0001) compared to sickle cell disease and worse physical (p = 0.04), emotional (p = 0.04) and worry (p = 0.01) domains compared to intestinal failure.ConclusionsThis study found that parent QOL and family functioning was worse in those families who had a child on an elimination diet for non-IgE mediated allergies compared to those with sickle cell disease and intestinal failure, highlighting the impact this disease has on families.
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