D. Aminoff - Academia.edu (original) (raw)
Papers by D. Aminoff
Techniques in Coloproctology, 2015
Pediatric Surgery International, 2015
Background Pediatric surgeons and patient organisations agree that fewer centers for anorectal ma... more Background Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations with larger patient numbers are essential to reach better treatment. The European Union transacts a political process which aims to realize such centers of expertise for a multitude of rare diseases. All the centers on a specific rare disease should constitute an ERN on that disease. ARM-Net members in different countries report on first experiences with the implementation of national directives, identifying opportunities and risks of this process. Methods Relevant details from the official European legislation were analyzed. A survey among the pediatric surgeons of the multidisciplinary ARM-Net consortium about national implementation was conducted. Results European legislation calls for multidisciplinary centers treating children with rare diseases, and proposes a multitude of quality criteria. The member states are called to allocate sufficient funding and to execute robust governance and oversight, applying clear methods for evaluation. Participation of the patient organisations is mandatory. The national implementations all over Europe differ a lot in respect of extent and timeframe. Conclusions Establishing Centers of Expertise and a ERN for anorectal malformations offers great opportunities for patient care and research. Pediatric surgeons should be actively engaged in this process.
Pediatric Surgery International, 2015
Disease-specific quality of life (QoL) may be more or less relevant when children enter preadoles... more Disease-specific quality of life (QoL) may be more or less relevant when children enter preadolescence/adolescence. Few attentions have been given to development and transition periods. Aim of the present longitudinal study is to evaluate ARM specific changes in QoL and the stability of QoL over 6 years. Questionnaires were sent to families of the AIMAR Association (in 2007 and in 2013/2014). They included the Hirschsprung's Disease/ARM QoL Questionnaire (HAQL, [1]). Rank correlations and within group comparisons for the HAQL subscales were conducted analyzing the scores of time 1 vs time 2. Gender effects were tested. 134 parents answered the questionnaires at time 1 and 73 at time 2. Results of the repeated Analyses of Variance indicated improvements in the continence subscales ("Presence of Diarrhea," "Fecal Continence"). QoL significantly worsened in "Social and Emotional Functioning" and in "Body Image" areas. The analysis of stability of change indicates that QoL scores remain stable, with the exception of the Body Image area. Despite improvements in the continence areas, parents reported worse levels of QoL in the psychosocial areas, as their child grow. As patients grow, they might have more difficulties in daily and social activities, and feel more frequently ashamed and more dissatisfied with their body.
European Journal of Biochemistry, 1985
Pediatric Surgery International, 2014
Managing a chronic disease may be a difficult task which may lead patients to experience psycholo... more Managing a chronic disease may be a difficult task which may lead patients to experience psychological distress and depression. Some studies showed that, in ARM patients, fecal incontinence (FI) is related to symptoms of depression while others studies did not. No studies investigated this relationship in adults. Since fear of having FI episodes, negative feelings associated with these episodes, and difficulties in close and sexual relationships are often reported by patients as important consequences of ARM, we were interested in investigating whether these aspects contribute in explaining feelings of depression. Questionnaires were sent to 160 adult members of the Italian Association for Anorectal Malformation. A new scale measuring the fear of having FI episodes, negative feelings associated with these episodes and difficulties in close/sexual relationship was developed. Depressive feelings and FI were also measured. Seventy-two adults answered the questionnaires. Regression analyses showed that, in males, depressive feelings were predicted by difficulties in close and sexual relationships (B = 0.46; P < 0.01), while, in females, they were predicted by the fear of having FI episodes (B = 0.53; P < 0.05) and by negative feelings (B = 0.58; P < 0.01). Interventions aimed to prevent depression in ARM patients should consider gender and should be targeted on different aspects.
Pediatric Surgery International, 2008
Introduction Several studies indicate that self-efficacy may have profound positive effects on he... more Introduction Several studies indicate that self-efficacy may have profound positive effects on health promotion, clinical practice and other outcomes, like patients' satisfaction and quality of life. However no studies on selfefficacy have been conducted in anorectal malformation (ARM) patients. Aim of the present study is to analyze the relationships between self-efficacy and satisfaction with postoperative care in ARM patients or in their parents and between self-efficacy, body image and sexual functioning in adult ARM patients. Material and methods A total of 237 patients from 2 to 49 years old (mean age = 13.35 years old) participated in the study. Questionnaires were sent to members of the Italian Association for Anorectal Malformation (AIMAR) by ordinary mail. All subjects were asked to fill in the AIMAR questionnaire in which information about the perceived severity of malformation and postoperative care satisfaction were collected. For patients under 16 years old, parents were asked to fill in a questionnaire and a parent self-efficacy scale concerning the perceived ability to overcome possible difficulties related to ARM. Participants above 16 years of age were asked to fill in the questionnaire, a self-efficacy scale and some body image and sexual functioning items. Results The main findings indicate that those patients who feel more efficacious are those who feel less embarrassed and shame about their body, feel less frequently unsatisfied of their body and their physical condition, and have the perception to be less limited in their sexual activities. Considering patients under 16 years old, results indicate that more parents feel efficacious, the more they are satisfied of the postoperative care, especially of some health care providers. Conclusions In ARM patients self-efficacy and parents self efficacy are correlated to important outcomes, respectively body image and sexual functioning in adults and postoperative care satisfaction in parents of those under 16 years old. Future longitudinal studies are needed to evaluate causal relations between the concepts considered.
Cytometry, 2001
In vivo phagocytosis of senescent red blood cells (RBCs) by macrophages occurs 120 days after the... more In vivo phagocytosis of senescent red blood cells (RBCs) by macrophages occurs 120 days after their release into the circulation. It depends on two sequential signals that trigger phagocytosis: (1) desialylation of membrane glycoconjugates with the exposure of the penultimate beta-galactosyl residues and (2) exposure of phosphatidylserine in the membrane outer leaflet. Leukodepleted and nonleukodepleted RBCs were compared using flow cytometric procedures to determine whether the in vitro deterioration of RBCs during storage might be attributable to an identical mechanism of desialylation induced by leukocyte neuraminidases, resulting in exposure of beta-galactosyl and subsequently phosphatidylserine residues - signals of senescent RBCs. Without prior leukodepletion, stored RBCs showed an increased population of senescent RBCs (using light scatter measurements), extensive desialylation with the exposure of beta-galactosyl residues (using specific fluorescein isothiocyanate [FITC]-lectins), significant exposure of phosphatidylserine in the outer leaflet of the RBC membrane (using FITC-annexin V), and extensive in vitro phagocytosis (using PKH-26-labeled RBCs). There were minimal changes observed with the leukodepleted RBCs. These results lead to the conclusion that leukocyte enzymes, including neuraminidases, are definitive contributers to the desialylation of RBCs during storage and to the exposure of phosphatidylserine residues. These deleterious effects resulting from highly active leukocyte enzymes are preventable by prior leukodepletion of the stored RBCs. Previously developed flow cytometric procedures to detect in vivo "RBC senescence" have been applied and proved to be reliable criteria to monitor the viability of stored RBCs.
Transfusion, 1979
The hemagglutinating properties of a large proportion of anti-M and anti-N reagents, and sera con... more The hemagglutinating properties of a large proportion of anti-M and anti-N reagents, and sera containing antibodies to MN-related antigens, have been shown tn be unaffected by treatment of red t h u d cells with neuraminidase. These antibodies, which define NANAindependent MN-system structures, provide further evidence that MN blood group specificity may also be determined by moieties other than N-acetylneuraminic acid.
Proceedings of the National Academy of Sciences, 1986
Senescent human erythrocytes (RBC) are able to adhere to and be phagocytized by autologous monocy... more Senescent human erythrocytes (RBC) are able to adhere to and be phagocytized by autologous monocytes in vitro to a greater extent than are young RBC. This adhesion and erythrophagocytosis of senescent RBC is inhibited by D-galactose, N-acetyl-D-galactosamine, their corresponding derivatives of bovine serum albumin, and lactose. On the other hand, D-glucose, D-mannose, L-fucose, N-acetyl-D-glucosamine, and their corresponding derivatives of bovine serum albumin are noninhibiting. The glycopeptides released by tryptic digestion of senescent RBC and purified on immobilized peanut agglutinin are the most effective inhibitors of both RBC adhesion and phagocytosis by autologous monocytes obtained from peripheral blood.
Pediatric Surgery International, 2010
Purpose The aim of the present study was to analyze disease-specific quality of life, as assessed... more Purpose The aim of the present study was to analyze disease-specific quality of life, as assessed by the Hirschsprung Disease/Anorectal Malformation Quality of Life (HAQL) questionnaire, in children and adults with anorectal malformations (ARM). Methods As much as 175 children and 62 adults who were members of the Italian Association for Anorectal Malformations were asked to complete the Italian version of the HAQL questionnaire developed for this study. For children under 16 years of age, mothers were asked to fill up the questionnaires. Patients were also asked to indentify their type of malformation from a list of eight choices. Results Most subscales of the Italian HAQL had acceptable reliability. Compared to children, adults reported significantly lower levels of QL on subscales measuring emotional functioning, body image, and physical symptoms.
Pediatric Surgery International, 2013
Pediatric Surgery International, 2013
Fecal incontinence is a common problem in children and adolescents with anorectal malformation (A... more Fecal incontinence is a common problem in children and adolescents with anorectal malformation (ARM) and may negatively impact psycho-social well-being. Mothers&amp;amp;amp;#39; perception of social support has been proved to contribute to children&amp;amp;amp;#39;s quality of life (QOL). Considering ARM studies, the role of family and social resources have received little attention. The aim of the present study was to analyze whether mothers&amp;amp;amp;#39; perception of social support mediates the impact of child fecal incontinence on his/her QOL. One hundred and nine mothers with a child born with ARM (aged 6-15 years old; mean age = 11 years) completed questionnaires including the fecal incontinence subscale of the Hirschsprung&amp;amp;amp;#39;s Disease/Anorectal Malformation QOL Questionnaire, the Pediatric QOL Inventory, and a social relationship questionnaire. Structural equation models were used to explore the relations hypothesized. No differences were found in the QOL scores across gender. The hypothesized model fits the data well; mothers&amp;amp;amp;#39; perception of social support partially mediated the relationship between fecal incontinence and QOL. An important direction for pediatric surgeons and their interdisciplinary teams may be to develop strategies to strengthen mothers&amp;amp;amp;#39; social relationships.
Journal of Pediatric Surgery, 2012
Background: The main aim of the present study was to investigate how fecal incontinence might inf... more Background: The main aim of the present study was to investigate how fecal incontinence might influence different aspects of quality of life (QOL) in children and adolescents with anorectal malformations (ARMs). We considered both the influence of fecal incontinence at time 1 of the study and the influence of fecal incontinence at time 2 (4 years later) on QOL measured at time 2. Methods: A total of 175 parents from the Italian Parents' and Patients' Association for Anorectal Malformations completed a questionnaire about fecal incontinence in their children at time 1 of the study. Four years later, 97 of these parents completed the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire. Patient ages ranged from 4 to 17 years. Quality of life areas from the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire were considered as outcome variables in a hierarchical regression analyses where fecal incontinence at time 1 and at time 2 served as predictors. Results: The principal findings indicated that fecal incontinence at time 2 significantly predicted constipating diet, presence of diarrhea, urinary continence, social functioning, emotional functioning, body image, and physical symptoms, also when severity of the malformation was taken into account. Conclusions: It is extremely important that pediatric surgeons continue to promote effective bowel management programs and that they work with other specialists and support associations to offer emotional and psychological support to patients with ARM and their families.
Journal of Pediatric Surgery, 2006
Background: Several studies addressed the long-term follow-up of anorectal anomalies (ARM) in rel... more Background: Several studies addressed the long-term follow-up of anorectal anomalies (ARM) in relation to clinical issues (eg, continence) and quality of life. However, most of these studies are based upon questionnaires designed by physicians and/or healthcare professionals, which may be sources of bias. Methods: To investigate whether parents of children (patients themselves or older children or adults) who were born with ARM had the perception that they received appropriate care and follow-up, a survey was carried out in Italy, in 2003, among families with children with ARM. A 20-item questionnaire was mailed to 425 patients and parents listed in the AIMAR (Italian association for anorectal malformation) database and was returned by 209 families. The questionnaire covered different aspects of ARM: type of malformations and surgery, associated anomalies, fecal and urinary continence, as well as aspects about information given to the parents and satisfaction of care and follow-up received. Result: The patients and parents demonstrated a good understanding of distribution of malformations and their anatomical classification; nevertheless, 67% of responders had to travel outside their living area for surgery. Bowel management (BM) was commonly used among subjects; however, a significant percentage of patients using regular enemas were still soiling (58 patients were clean and 116 soiled). Urinary continence problems were mostly found in females with cloaca; nevertheless, 21 male patients reported occasional dribbling of difficult interpretation. Most subjects were provided with a good explanation about their or their child's malformation at time of reconstructive surgery, but the same level of information was missing about functional prognosis later in life when the need of an appropriate psychologic support was also felt. Conclusions: Patients and parents born with ARM are generally satisfied with the information received and with the short-term postreconstructive follow-up care. At longer follow-up, although more than a quarter of patients are completely clean, there is a significant percentage of subjects who still soil while following a BM program. This is explained by the small number of nurses and BM specialists who are involved in the rehabilitation process 0022-3468/$ -see front matter D
Comptes Rendus de l'Académie des Sciences - Series III - Sciences de la Vie, 1997
![Research paper thumbnail of Quantitative determination of reducing sugars, oligosaccharides, and glycoproteins with [3H]borohydride](https://attachments.academia-assets.com/44260082/thumbnails/1.jpg)
](Analytical Biochemistry, 1973
A very simple and dirrct radioactive isotope m&hod has been tlwcl~ibed for the quantitative deter... more A very simple and dirrct radioactive isotope m&hod has been tlwcl~ibed for the quantitative determination of reducing sugars. The method can be adapted to give any degrtte of sensitivity desired. The procedure is of general applicability to the determination of a large class of sugars. The stoichiometry of the reaction makes it a comprehensive procedure which greatly facilitates the analysis of sugars, oligosaccharides, and glycoproteins after acid and enzymic hydrolysis. Examples of the versatility of the method are given.
Analytical Biochemistry, 1980
Techniques in Coloproctology, 2015
The ARM-Net (anorectal malformation network) consortium held a consensus meeting in which the cla... more The ARM-Net (anorectal malformation network) consortium held a consensus meeting in which the classification of ARM and preoperative workup were evaluated with the aim of improving monitoring of treatment and outcome. The Krickenbeck classification of ARM and preoperative workup suggested by Levitt and Peña, used as a template, were discussed, and a collaborative consensus was achieved. The Krickenbeck classification is appropriate in describing ARM for clinical use. The preoperative workup was slightly modified. In males with a visible fistula, no cross-table lateral X-ray is needed and an anoplasty or (mini-) posterior sagittal anorectoplasty can directly be performed. In females with a small vestibular fistula (Hegar size \5 mm), a primary repair or colostomy is recommended; the repair may be delayed if the fistula admits a Hegar size [5 mm, and in the meantime, gentle painless dilatations can be performed. In both male and female perineal fistula and either a low birth weight (\2,000 g) or severe associated congenital anomalies, prolonged preoperative painless dilatations might be indicated to decrease perioperative morbidity caused by general anesthesia. The Krickenbeck classification is appropriate in describing ARM for clinical use. Some minor modifications to the preoperative workup by Levitt and Peña have been introduced in order to refine terminology and establish a comprehensive preoperative workup.
Techniques in Coloproctology, 2015
Pediatric Surgery International, 2015
Background Pediatric surgeons and patient organisations agree that fewer centers for anorectal ma... more Background Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations with larger patient numbers are essential to reach better treatment. The European Union transacts a political process which aims to realize such centers of expertise for a multitude of rare diseases. All the centers on a specific rare disease should constitute an ERN on that disease. ARM-Net members in different countries report on first experiences with the implementation of national directives, identifying opportunities and risks of this process. Methods Relevant details from the official European legislation were analyzed. A survey among the pediatric surgeons of the multidisciplinary ARM-Net consortium about national implementation was conducted. Results European legislation calls for multidisciplinary centers treating children with rare diseases, and proposes a multitude of quality criteria. The member states are called to allocate sufficient funding and to execute robust governance and oversight, applying clear methods for evaluation. Participation of the patient organisations is mandatory. The national implementations all over Europe differ a lot in respect of extent and timeframe. Conclusions Establishing Centers of Expertise and a ERN for anorectal malformations offers great opportunities for patient care and research. Pediatric surgeons should be actively engaged in this process.
Pediatric Surgery International, 2015
Disease-specific quality of life (QoL) may be more or less relevant when children enter preadoles... more Disease-specific quality of life (QoL) may be more or less relevant when children enter preadolescence/adolescence. Few attentions have been given to development and transition periods. Aim of the present longitudinal study is to evaluate ARM specific changes in QoL and the stability of QoL over 6 years. Questionnaires were sent to families of the AIMAR Association (in 2007 and in 2013/2014). They included the Hirschsprung's Disease/ARM QoL Questionnaire (HAQL, [1]). Rank correlations and within group comparisons for the HAQL subscales were conducted analyzing the scores of time 1 vs time 2. Gender effects were tested. 134 parents answered the questionnaires at time 1 and 73 at time 2. Results of the repeated Analyses of Variance indicated improvements in the continence subscales ("Presence of Diarrhea," "Fecal Continence"). QoL significantly worsened in "Social and Emotional Functioning" and in "Body Image" areas. The analysis of stability of change indicates that QoL scores remain stable, with the exception of the Body Image area. Despite improvements in the continence areas, parents reported worse levels of QoL in the psychosocial areas, as their child grow. As patients grow, they might have more difficulties in daily and social activities, and feel more frequently ashamed and more dissatisfied with their body.
European Journal of Biochemistry, 1985
Pediatric Surgery International, 2014
Managing a chronic disease may be a difficult task which may lead patients to experience psycholo... more Managing a chronic disease may be a difficult task which may lead patients to experience psychological distress and depression. Some studies showed that, in ARM patients, fecal incontinence (FI) is related to symptoms of depression while others studies did not. No studies investigated this relationship in adults. Since fear of having FI episodes, negative feelings associated with these episodes, and difficulties in close and sexual relationships are often reported by patients as important consequences of ARM, we were interested in investigating whether these aspects contribute in explaining feelings of depression. Questionnaires were sent to 160 adult members of the Italian Association for Anorectal Malformation. A new scale measuring the fear of having FI episodes, negative feelings associated with these episodes and difficulties in close/sexual relationship was developed. Depressive feelings and FI were also measured. Seventy-two adults answered the questionnaires. Regression analyses showed that, in males, depressive feelings were predicted by difficulties in close and sexual relationships (B = 0.46; P < 0.01), while, in females, they were predicted by the fear of having FI episodes (B = 0.53; P < 0.05) and by negative feelings (B = 0.58; P < 0.01). Interventions aimed to prevent depression in ARM patients should consider gender and should be targeted on different aspects.
Pediatric Surgery International, 2008
Introduction Several studies indicate that self-efficacy may have profound positive effects on he... more Introduction Several studies indicate that self-efficacy may have profound positive effects on health promotion, clinical practice and other outcomes, like patients' satisfaction and quality of life. However no studies on selfefficacy have been conducted in anorectal malformation (ARM) patients. Aim of the present study is to analyze the relationships between self-efficacy and satisfaction with postoperative care in ARM patients or in their parents and between self-efficacy, body image and sexual functioning in adult ARM patients. Material and methods A total of 237 patients from 2 to 49 years old (mean age = 13.35 years old) participated in the study. Questionnaires were sent to members of the Italian Association for Anorectal Malformation (AIMAR) by ordinary mail. All subjects were asked to fill in the AIMAR questionnaire in which information about the perceived severity of malformation and postoperative care satisfaction were collected. For patients under 16 years old, parents were asked to fill in a questionnaire and a parent self-efficacy scale concerning the perceived ability to overcome possible difficulties related to ARM. Participants above 16 years of age were asked to fill in the questionnaire, a self-efficacy scale and some body image and sexual functioning items. Results The main findings indicate that those patients who feel more efficacious are those who feel less embarrassed and shame about their body, feel less frequently unsatisfied of their body and their physical condition, and have the perception to be less limited in their sexual activities. Considering patients under 16 years old, results indicate that more parents feel efficacious, the more they are satisfied of the postoperative care, especially of some health care providers. Conclusions In ARM patients self-efficacy and parents self efficacy are correlated to important outcomes, respectively body image and sexual functioning in adults and postoperative care satisfaction in parents of those under 16 years old. Future longitudinal studies are needed to evaluate causal relations between the concepts considered.
Cytometry, 2001
In vivo phagocytosis of senescent red blood cells (RBCs) by macrophages occurs 120 days after the... more In vivo phagocytosis of senescent red blood cells (RBCs) by macrophages occurs 120 days after their release into the circulation. It depends on two sequential signals that trigger phagocytosis: (1) desialylation of membrane glycoconjugates with the exposure of the penultimate beta-galactosyl residues and (2) exposure of phosphatidylserine in the membrane outer leaflet. Leukodepleted and nonleukodepleted RBCs were compared using flow cytometric procedures to determine whether the in vitro deterioration of RBCs during storage might be attributable to an identical mechanism of desialylation induced by leukocyte neuraminidases, resulting in exposure of beta-galactosyl and subsequently phosphatidylserine residues - signals of senescent RBCs. Without prior leukodepletion, stored RBCs showed an increased population of senescent RBCs (using light scatter measurements), extensive desialylation with the exposure of beta-galactosyl residues (using specific fluorescein isothiocyanate [FITC]-lectins), significant exposure of phosphatidylserine in the outer leaflet of the RBC membrane (using FITC-annexin V), and extensive in vitro phagocytosis (using PKH-26-labeled RBCs). There were minimal changes observed with the leukodepleted RBCs. These results lead to the conclusion that leukocyte enzymes, including neuraminidases, are definitive contributers to the desialylation of RBCs during storage and to the exposure of phosphatidylserine residues. These deleterious effects resulting from highly active leukocyte enzymes are preventable by prior leukodepletion of the stored RBCs. Previously developed flow cytometric procedures to detect in vivo "RBC senescence" have been applied and proved to be reliable criteria to monitor the viability of stored RBCs.
Transfusion, 1979
The hemagglutinating properties of a large proportion of anti-M and anti-N reagents, and sera con... more The hemagglutinating properties of a large proportion of anti-M and anti-N reagents, and sera containing antibodies to MN-related antigens, have been shown tn be unaffected by treatment of red t h u d cells with neuraminidase. These antibodies, which define NANAindependent MN-system structures, provide further evidence that MN blood group specificity may also be determined by moieties other than N-acetylneuraminic acid.
Proceedings of the National Academy of Sciences, 1986
Senescent human erythrocytes (RBC) are able to adhere to and be phagocytized by autologous monocy... more Senescent human erythrocytes (RBC) are able to adhere to and be phagocytized by autologous monocytes in vitro to a greater extent than are young RBC. This adhesion and erythrophagocytosis of senescent RBC is inhibited by D-galactose, N-acetyl-D-galactosamine, their corresponding derivatives of bovine serum albumin, and lactose. On the other hand, D-glucose, D-mannose, L-fucose, N-acetyl-D-glucosamine, and their corresponding derivatives of bovine serum albumin are noninhibiting. The glycopeptides released by tryptic digestion of senescent RBC and purified on immobilized peanut agglutinin are the most effective inhibitors of both RBC adhesion and phagocytosis by autologous monocytes obtained from peripheral blood.
Pediatric Surgery International, 2010
Purpose The aim of the present study was to analyze disease-specific quality of life, as assessed... more Purpose The aim of the present study was to analyze disease-specific quality of life, as assessed by the Hirschsprung Disease/Anorectal Malformation Quality of Life (HAQL) questionnaire, in children and adults with anorectal malformations (ARM). Methods As much as 175 children and 62 adults who were members of the Italian Association for Anorectal Malformations were asked to complete the Italian version of the HAQL questionnaire developed for this study. For children under 16 years of age, mothers were asked to fill up the questionnaires. Patients were also asked to indentify their type of malformation from a list of eight choices. Results Most subscales of the Italian HAQL had acceptable reliability. Compared to children, adults reported significantly lower levels of QL on subscales measuring emotional functioning, body image, and physical symptoms.
Pediatric Surgery International, 2013
Pediatric Surgery International, 2013
Fecal incontinence is a common problem in children and adolescents with anorectal malformation (A... more Fecal incontinence is a common problem in children and adolescents with anorectal malformation (ARM) and may negatively impact psycho-social well-being. Mothers&amp;amp;amp;#39; perception of social support has been proved to contribute to children&amp;amp;amp;#39;s quality of life (QOL). Considering ARM studies, the role of family and social resources have received little attention. The aim of the present study was to analyze whether mothers&amp;amp;amp;#39; perception of social support mediates the impact of child fecal incontinence on his/her QOL. One hundred and nine mothers with a child born with ARM (aged 6-15 years old; mean age = 11 years) completed questionnaires including the fecal incontinence subscale of the Hirschsprung&amp;amp;amp;#39;s Disease/Anorectal Malformation QOL Questionnaire, the Pediatric QOL Inventory, and a social relationship questionnaire. Structural equation models were used to explore the relations hypothesized. No differences were found in the QOL scores across gender. The hypothesized model fits the data well; mothers&amp;amp;amp;#39; perception of social support partially mediated the relationship between fecal incontinence and QOL. An important direction for pediatric surgeons and their interdisciplinary teams may be to develop strategies to strengthen mothers&amp;amp;amp;#39; social relationships.
Journal of Pediatric Surgery, 2012
Background: The main aim of the present study was to investigate how fecal incontinence might inf... more Background: The main aim of the present study was to investigate how fecal incontinence might influence different aspects of quality of life (QOL) in children and adolescents with anorectal malformations (ARMs). We considered both the influence of fecal incontinence at time 1 of the study and the influence of fecal incontinence at time 2 (4 years later) on QOL measured at time 2. Methods: A total of 175 parents from the Italian Parents' and Patients' Association for Anorectal Malformations completed a questionnaire about fecal incontinence in their children at time 1 of the study. Four years later, 97 of these parents completed the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire. Patient ages ranged from 4 to 17 years. Quality of life areas from the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire were considered as outcome variables in a hierarchical regression analyses where fecal incontinence at time 1 and at time 2 served as predictors. Results: The principal findings indicated that fecal incontinence at time 2 significantly predicted constipating diet, presence of diarrhea, urinary continence, social functioning, emotional functioning, body image, and physical symptoms, also when severity of the malformation was taken into account. Conclusions: It is extremely important that pediatric surgeons continue to promote effective bowel management programs and that they work with other specialists and support associations to offer emotional and psychological support to patients with ARM and their families.
Journal of Pediatric Surgery, 2006
Background: Several studies addressed the long-term follow-up of anorectal anomalies (ARM) in rel... more Background: Several studies addressed the long-term follow-up of anorectal anomalies (ARM) in relation to clinical issues (eg, continence) and quality of life. However, most of these studies are based upon questionnaires designed by physicians and/or healthcare professionals, which may be sources of bias. Methods: To investigate whether parents of children (patients themselves or older children or adults) who were born with ARM had the perception that they received appropriate care and follow-up, a survey was carried out in Italy, in 2003, among families with children with ARM. A 20-item questionnaire was mailed to 425 patients and parents listed in the AIMAR (Italian association for anorectal malformation) database and was returned by 209 families. The questionnaire covered different aspects of ARM: type of malformations and surgery, associated anomalies, fecal and urinary continence, as well as aspects about information given to the parents and satisfaction of care and follow-up received. Result: The patients and parents demonstrated a good understanding of distribution of malformations and their anatomical classification; nevertheless, 67% of responders had to travel outside their living area for surgery. Bowel management (BM) was commonly used among subjects; however, a significant percentage of patients using regular enemas were still soiling (58 patients were clean and 116 soiled). Urinary continence problems were mostly found in females with cloaca; nevertheless, 21 male patients reported occasional dribbling of difficult interpretation. Most subjects were provided with a good explanation about their or their child's malformation at time of reconstructive surgery, but the same level of information was missing about functional prognosis later in life when the need of an appropriate psychologic support was also felt. Conclusions: Patients and parents born with ARM are generally satisfied with the information received and with the short-term postreconstructive follow-up care. At longer follow-up, although more than a quarter of patients are completely clean, there is a significant percentage of subjects who still soil while following a BM program. This is explained by the small number of nurses and BM specialists who are involved in the rehabilitation process 0022-3468/$ -see front matter D
Comptes Rendus de l'Académie des Sciences - Series III - Sciences de la Vie, 1997
Analytical Biochemistry, 1973
A very simple and dirrct radioactive isotope m&hod has been tlwcl~ibed for the quantitative deter... more A very simple and dirrct radioactive isotope m&hod has been tlwcl~ibed for the quantitative determination of reducing sugars. The method can be adapted to give any degrtte of sensitivity desired. The procedure is of general applicability to the determination of a large class of sugars. The stoichiometry of the reaction makes it a comprehensive procedure which greatly facilitates the analysis of sugars, oligosaccharides, and glycoproteins after acid and enzymic hydrolysis. Examples of the versatility of the method are given.
Analytical Biochemistry, 1980
Techniques in Coloproctology, 2015
The ARM-Net (anorectal malformation network) consortium held a consensus meeting in which the cla... more The ARM-Net (anorectal malformation network) consortium held a consensus meeting in which the classification of ARM and preoperative workup were evaluated with the aim of improving monitoring of treatment and outcome. The Krickenbeck classification of ARM and preoperative workup suggested by Levitt and Peña, used as a template, were discussed, and a collaborative consensus was achieved. The Krickenbeck classification is appropriate in describing ARM for clinical use. The preoperative workup was slightly modified. In males with a visible fistula, no cross-table lateral X-ray is needed and an anoplasty or (mini-) posterior sagittal anorectoplasty can directly be performed. In females with a small vestibular fistula (Hegar size \5 mm), a primary repair or colostomy is recommended; the repair may be delayed if the fistula admits a Hegar size [5 mm, and in the meantime, gentle painless dilatations can be performed. In both male and female perineal fistula and either a low birth weight (\2,000 g) or severe associated congenital anomalies, prolonged preoperative painless dilatations might be indicated to decrease perioperative morbidity caused by general anesthesia. The Krickenbeck classification is appropriate in describing ARM for clinical use. Some minor modifications to the preoperative workup by Levitt and Peña have been introduced in order to refine terminology and establish a comprehensive preoperative workup.