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A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system
Janneke Hatzmann, Heleen Maurice-Stam, Hugo SA Heymans, Martha A Grootenhuis
Health and Quality of Life Outcomes , 2009, DOI: 10.1186/1477-7525-7-72
Abstract: In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data.The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: β = .21) and emotional support (PCS: β = .14; MCS: β = .28). Also, female gender (β = -.10), age (β = .10), being chronically ill as a parent (β = -.34), and care dependency of the child (β = -.14; β = -.15) were directly related to parental HRQoL.The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.With the increased prevalence and incidence of chronic illness in children [1], the number of families with a chronically ill child has also increased. This increase is combined with a transfer of increasingly complex medical care to the home-situation (e.g. dialysis, parenteral nutrition). Also, family demographics have changed the last decades into smaller families, more single-parent families and mothers more often are employed [2]. These changes stress the need for a better understanding of the consequences for families caring for a chronically ill child. Caregiving demands can be extensive, and may lead to adverse psychosocial consequences for parents.In a previous report we have shown that almost half of the parents of chronically ill children are at risk for an impaired Health Related Quality of Life (HR
The importance of social support to chronically ill adolescents  [PDF]
Ni?evi? Sanja
Medicinski Pregled , 2006, DOI: 10.2298/mpns0608331n
Abstract: Introduction. Improvements in medicine have significantly prolonged life of chronically ill children and adolescents in the past several decades. There is a great variability in adaptation to illness among chronically ill persons - some of them seem to be very well adapted, with almost no problems. However, research results suggest that chronically ill children are more likely to have psychological problems than their healthy peers. Material and methods. Eighty-four subjects, all elementary school pupils, participated in the study. The first group included adolescents with chronical illness (malignant illness, insulin dependent diabetes mellitus, epilepsy, or asthma), and the second their healthy peers. Depression and social support were evaluated. The Birleson's Depression Scale and Perceived Social Support Scales (forms for friends and for family members) were used. Results and discussion. The results show significant differences for two of the three variables: depression, and perceived social support from family, while there was no significant difference for perceived social support from friends. The results suggest that chronically ill adolescents are more depressed and that they perceive that the social support they receive from their families is lower when compared to their healthy peers. Conclusion. The results of this study showed that chronically ill adolescents are more depressed than their healthy peers. This group of adolescents also perceives that they have less social support from their families than their healthy peers. When it comes to perceived social support from friends, these two groups do not differ. .
Nutritional and metabolic assessment of critically ill children
Leite, Heitor Pons;Carvalho, Werther Brunow de;Fisberg, Mauro;
Sao Paulo Medical Journal , 1996, DOI: 10.1590/S1516-31801996000300003
Abstract: in a prospective study, with the objective of determining the metabolic profile, response to nutrient supply, and role of nutritional and metabolic assessment parameters in children admitted to a pediatric icu, 11 patients in the age group 2-12 were studied. the assessment was carried out during the first 72 hours of admission, and again seven days later, and included the following parameters: caloric supply; nitrogen supply; prealbumin serum level; urinary urea nitrogen; nitrogen balance and creatinine-height index. the evolution of the parameters in the two stages of the study showed the following results: the urinary urea nitrogen median value at admission was 7.5 g/m2 of corporeal surface, and did not present significant changes seven days later. there was a significant increase in caloric supply from 42.9 to 70,3 kcal/kg, and in nitrogen supply, from 4.7 to 10.2 g/m2 of corporeal surface p 0.01 . the level of nitrogen balance rose from - 5.6 to 2.5 g/24h (p<0.03), and that of prealbumin, from 16.7 to 26.3 mg/dl (p<0.03). there was a significant reduction in the creatinine-height index, from 86.2 percent to 55.0 percent p 0.01. the magnitude of urinary urea nitrogen excretion at admission varied 2.5-13.8 g/m2 of corporeal surface. based on this parameter, it was not possible to establish a characteristic metabolic profile for the conditions studied. notwithstanding an increase in the protein and caloric supply, prealbumin level and nitrogen balance observed in the second stage of the study, the patients lost muscle mass and entered into a malnutrition process, probably due to intense protein catabolism and the poor response to nutrition supply that occurs in metabolic stress.
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Nutritional assessment
Ruiz-Santana,S.; Arboleda Sánchez,J. A.; Abilés,J.;
Nutrición Hospitalaria , 2011,
Abstract: current parameters to assess nutritional status in critically-ill patients are useful to evaluate nutritional status prior to admission to the intensive care unit. however, these parameters are of little utility once the patient's nutritional status has been altered by the acute process and its treatment. changes in water distribution affect anthropometric variables and biochemical biomarkers, which in turn are affected by synthesis and degradation processes. increased plasma levels of prealbumin and retinol -proteins with a short half-life- can indicate adequate response to nutritional support, while reduced levels of these proteins indicate further metabolic stress. the parameters used in functional assessment, such as those employed to assess muscular or immune function, are often altered by drugs or the presence of infection or polyneuropathy. however, some parameters can be used to monitor metabolic response and refeeding or can aid prognostic evaluation.
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Neurocritical patient
Acosta Escribano,J.; Herrero Meseguer,I.; Conejero García-Quijada,R.;
Nutrición Hospitalaria , 2011,
Abstract: neurocritical patients require specialized nutritional support due to their intense catabolism and prolonged fasting. the preferred route of nutrient administration is the gastrointestinal route, especially the gastric route. alternatives are the transpyloric route or mixed enteralparenteral nutrition if an effective nutritional volume of more than 60% cannot be obtained. total calore intake ranges from 20-30 kcal/kg/day, depending on the period of the clinical course, with protein intake higher than 20% of total calories (hyperproteic diet). nutritional support should be initiated early. the incidence of gastrointestinal complications is generally higher to other critically-ill patients, the most frequent complication being an increase in gastric residual volume. as in other critically-ill patients, glycemia should be closely monitored and maintained below 150 mg/dl.
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Indications, timing and routes of nutrient delivery
Fernández-Ortega,J. F.; Herrero Meseguer,J. I.; Martínez García,P.;
Nutrición Hospitalaria , 2011,
Abstract: this article discusses basic features of nutritional support in critically-ill patients: general indications, the route of administration and the optimal timing for the introduction of feeding. although these features form the bedrock of nutritional support, most of the questions related to these issues are lacking answers based on the highest grade of evidence. moreover, prospective randomized trials that might elucidate some o f these questions would probably be incompatible with good clinical practice. nevertheless, nutritional support in critically-ill patients unable to voluntarily meet their own nutritional requirements is currently an unquestionable part of their treatment and care and is essential to the successful mana gement of their illness.
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Obese patient
Mesejo,A.; Sánchez álvarez,C.; Arboleda Sánchez,J. A.;
Nutrición Hospitalaria , 2011,
Abstract: as a response to metabolic stress, obese critically-ill patients have the same risk of nutritional deficiency as the non-obese and can develop protein-energy malnutrition with accelerated loss of muscle mass. the primary aim of nutritional support in these patients should be to minimize loss of lean mass and accurately evaluate energy expenditure. however, routinelyused formulae can overestimate calorie requirements if the patient's actual weight is used. consequently, the use of adjusted or ideal weight is recommended with these formulae, although indirect calorimetry is the method of choice. controversy surrounds the question of whether a strict nutritional support criterion, adjusted to the patient's requirements, should be applied or whether a certain degree of hyponutrition should be allowed. current evidence suggested that hypocaloric nutrition can improve results, partly due to a lower rate of infectious complications and better control of hyperglycemia. therefore, hypocaloric and hyperproteic nutrition, whether enteral or parenteral, should be standard practice in the nutritional support of critically-ill obese patients when not contraindicated. widely accepted recommendations consist of no more than 60-70% of requirements or administration of 11-14 kcal/kg current body weight/day or 22-25 kcal/kg ideal weight/day, with 2-2.5 g/kg ideal weight/day of proteins. in a broad sense, hypocaloric-hyperprotein regimens can be considered specific to obese critically-ill patients, although the complications related to comorbidities in these patients may require other therapeutic possibilities to be considered, with specific nutrients for hyperglycemia, acute respiratory distress syndrome (ards) and sepsis. howe - ver, there are no prospective randomized trials with this type of nutrition in this specific population subgroup and the available data are drawn from the general population of critically-ill patients. consequently, caution should be exercised when interpreti
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Introduction and methodology
Mesejo,A.; Vaquerizo Alonso,C.; Acosta Escribano,J.; Ortiz Leiba,C.; Montejo González,J.C.;
Nutrición Hospitalaria , 2011,
Abstract: the recommendations for specialized nutritional support in critically-ill patients were drafted by the metabolism and nutrition working group of the spanish society of intensive care medicine and coronary units (semicyuc) in 2005. given the time elapsed since then, these recommendations have been reviewed and updated as a consensus document in collaboration with the spanish society of parenteral and enteral nutrition (senpe). the primary aim of these recommendations was to evaluate the best available scientific evidence for the indications of specialized nutritional and metabolic support in critically-ill patients. the recommendations have been formulated by an expert panel with broad experience in nutritional and metabolic support in critically-ill patients and were drafted between october 2009 and march 2011. the studies analyzed encompassed metaanalyses, randomized clinical trials, observational studies, systematic reviews and updates relating to critically-ill adults in medline from 1966 to 2010, embase reviews from 1991 to 2010 and the cochrane database of systematic reviews up to 2010. the methodological criteria selected were those established in the scottish intercollegiate guidelines network and the agency for health care policy and research, as well as those of the jadad quality scale. adjustment for the level of evidence and grade of recommendation was performed following the proposal of the grade group (grading of recommendations assessment, development and evaluation working group). sixteen pathological scenarios were selected and each of them was developed by groups of three experts. a feedback system was established with the five members of the editorial committee and with the entire working group. all discrepancies were discussed and consensus was reached over several meetings, with special emphasis placed on reviewing the levels of evidence and grades of recommendation. the editorial committee made the final adjustments before the document was appro
Food for Thought: The Effects of Nutritional Support on Outcomes in Hospitalized Elderly Patients and the Critically Ill  [PDF]
Jonathan Cohen,Miriam Tehilla,Ronit Anbar,Pierre Singer
Advances in Critical Care , 2014, DOI: 10.1155/2014/871328
Abstract: The provision of adequate nutritional support appears to be essential for critically ill patients and other groups of patients at high risk for having malnutrition. In this review paper we describe our recent research regarding the amount of energy to be provided, how this should be assessed, and the beneficial effects of specialized nutritional support. We have shown that repeated measurements of energy expenditure using indirect calorimetry capture the dynamic energy changes characteristic of hospitalized patients. The provision of energy according to these measurements was associated with lower hospital mortality in critically ill patients when compared to patients receiving a fixed energy intake. A similar study performed in geriatric patients revealed a significant reduction in the number of infections when energy was provided according to repeated measurements. We have also shown that a diet enriched with eicosapentaenoic acid and gamma-linolenic acid improved oxygenation and lung dynamics and decreased ventilation duration in ICU patients with acute lung injury and ARDS. A similarly enriched diet together with micronutrients resulted in significantly less progression of existing pressure ulcers in ICU patients compared to an isonitrogenous, nutrient-sufficient formula. This may be related to an increase in the percentage of positive lymphocyte and granulocyte adhesion molecules. 1. Introduction Guidelines have recommended the provision of adequate nutritional support for hospitalized patients, both for critically ill patients in the intensive care unit (ICU) and for other groups of patients at high risk for having malnutrition, either preexisting at admission or developing during their hospital stay. For ICU patients, it is recommended that nutrition should be provided early after admission to the hospital, ideally within the first 24?h, and preferably by the enteral route where this is possible [1–4]. However, some questions regarding nutrition support remain controversial, including the amount of energy to be provided, how this should be assessed, and the beneficial effects of specialized nutritional support. In this review paper, we will describe our recent research in this area, specifically the beneficial effects of optimizing energy requirements to be delivered to both ICU patients and another population at risk for undernutrition, namely, elderly patients undergoing hip replacement. In addition, we will describe the beneficial effects of specialized nutrition on pulmonary function and pressure ulcer development and progression in
Guidelines for specialized nutritional and metabolic support in the critically-ill patient: Update. Consensus SEMICYUC-SENPE: Septic patient
Ortiz Leyba,C.; Montejo González,J. C.; Vaquerizo Alonso,C.;
Nutrición Hospitalaria , 2011,
Abstract: nutritional metabolic management, together with other treatment and support measures used, is one of the mainstays of the treatment of septic patients. nutritional support should be started early, after initial life support measures, to avoid the consequences of malnutrition, to provide adequate nutritional intake and to prevent the development of secondary complications such as superinfection or multiorgan failure. as in other critically-ill patients, when the enteral route cannot be used to ensure calorie-protein requirements, the association of parenteral nutrition has been shown to be safe in this subgroup of patients. studies evaluating the effect of specific pharmaconutrients in septic patients are scarce and are insufficient to allow recommendations to be made. to date, enteral diets with a mixture of substrates with distinct pharmaconutrient properties do not seem to be superior to standard diets in altering the course of sepsis, although equally there is no evidence that these diets are harmful. there is insufficient evidence to recommend the use of glutamine in septic patients receiving parenteral nutrition. however, given the good results and absence of glutamine-related adverse effects in the various studies performed in the general population of critically-ill patients, these patients could benefit from the use of this substance. routine use of omega-3 fatty acids cannot be recommended until further evidence has been gathered, although the use of lipid emulsions with a high omega-6 fatty acid content should be avoided. septic patients should receive an adequate supply of essential trace elements and vitamins. further studies are required before the use of high-dose selenium can be recommended.
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