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15 records – page 1 of 2.

Addressing the hidden mortality in CDH: A population-based study.

https://arctichealth.org/en/permalink/ahliterature283224
Source
J Pediatr Surg. 2017 Apr;52(4):522-525
Publication Type
Article
Date
Apr-2017
Author
Carmen Mesas Burgos
Björn Frenckner
Source
J Pediatr Surg. 2017 Apr;52(4):522-525
Date
Apr-2017
Language
English
Publication Type
Article
Keywords
Abortion, Induced - statistics & numerical data
Cohort Studies
Female
Hernias, Diaphragmatic, Congenital - epidemiology - mortality
Humans
Incidence
Infant, Newborn
Kaplan-Meier Estimate
Male
Registries
Stillbirth - epidemiology
Sweden - epidemiology
Abstract
Improvements in the clinical management of CDH have led to overall improved reported result from single institutions. However, population-based studies have highlighted a hidden mortality.
To explore the incidence in Sweden and to address the hidden mortality for CDH during a 27-year period in a population-based setting.
This is a population based cohort study that includes all patients diagnosed with CDH that were registered in the National Patient Register, the Medical Birth Register, the Register of Congenital Malformations and the Register for Causes of Death between 1987 and 2013. The mortality rates were calculated based on the number deaths divided by the number of live born cases. The hidden mortality was defined as the number of CDH cases that were not born (because of TOP or IUFD), cases of neonatal demise during birth or demise the same day of birth in patients who were in peripheral institutions and who never reached tertiary centers.
In total, 861 CDH patients were born in Sweden between 1987 and 2013, which corresponds to an incidence of 3.0 born CDH per 10,000 live births. When adding the cases of TOP and IUFD, the total incidence of CDH in Sweden was 3.5/10,000 live born. The mortality rate between 1987 and 2013 was 36%: 44% during the first time period 1987-1999 and 27% in the later period 2000-2013. The hidden mortality in the second period was 30%, resulting in a total mortality rate of 45%.
The incidence of CDH during a 27-year period remained unchanged in the population. However, we observed a decrease in the prevalence because of the increasing numbers of TOP. A significant hidden mortality exists, with overall mortality rate of 45% for CDH in this population.
II (cohort).
PubMed ID
27745705 View in PubMed
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Children with high and intermediate imperforate anus: their experiences of hospital care.

https://arctichealth.org/en/permalink/ahliterature134418
Source
Pediatr Surg Int. 2011 Oct;27(10):1117-22
Publication Type
Article
Date
Oct-2011
Author
Maria Ojmyr-Joelsson
Björn Frenckner
Per-Anders Rydelius
Margret Nisell
Author Affiliation
Pediatric Surgery Unit, Department of Women's and Children's Health, Astrid Lindgren Children's Hospital, Karolinska Institutet, Stockholm, Sweden. maria.ojmyr-joelsson@karolinska.se
Source
Pediatr Surg Int. 2011 Oct;27(10):1117-22
Date
Oct-2011
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Anus, Imperforate - psychology - surgery
Body Image
Case-Control Studies
Child
Female
Hospitalization
Humans
Male
Patient satisfaction
Postoperative Complications
Quality of Life
Sweden
Abstract
The purpose of this study was to examine the experiences of children with high and intermediate imperforate anus (IA), and specifically their experiences of hospital care.
Twenty-five children born with high and intermediate IA participated; 9 boys and 16 girls. The mean age was 10.5 years (range 8.0-13.6). Two control groups were involved in the study. A self-report questionnaire was used to gather the data concerning children's experiences of hospital care. Items were scored on a 5-point Likert scale.
The children's responses on hospital care items scored high. The children with IA reported being less satisfied with the information given, and understood less why they needed to visit the hospital than did the children in the two control groups.
The children's experiences of care seemed to be positive even though the children born with IA are subjected to invasive treatment. More research is called for in the unexplored area of information to the children, and particularly to the children born with a defect. Children's views are important and should always be considered, as their answers most certainly reflect a genuine experience, contributing to the further development of their specific care.
PubMed ID
21590476 View in PubMed
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Congenital diaphragmatic hernia: a survey of practice in Scandinavia.

https://arctichealth.org/en/permalink/ahliterature180002
Source
Pediatr Surg Int. 2004 May;20(5):309-13
Publication Type
Article
Date
May-2004
Author
Hans Skari
Kristin Bjornland
Bjorn Frenckner
Lars Goran Friberg
Marja Heikkinen
Timo Hurme
Borger Loe
Gunnhild Mollerlokken
Ole Henrik Nielsen
Niels Qvist
Risto Rintala
Katarina Sandgren
Willy Serlo
Kari Wagner
Tomas Wester
Ragnhild Emblem
Author Affiliation
Section of Paediatric Surgery, Rikshospitalet University Hospital, N-0027 Oslo, Norway.
Source
Pediatr Surg Int. 2004 May;20(5):309-13
Date
May-2004
Language
English
Publication Type
Article
Keywords
Cross-Sectional Studies
Extracorporeal Membrane Oxygenation - utilization
Hernia, Diaphragmatic - congenital - diagnosis - therapy
High-Frequency Ventilation - utilization
Humans
Physician's Practice Patterns
Scandinavia
Abstract
There is no consensus on the treatment of congenital diaphragmatic hernia (CDH), and practice seems to vary between centres. The main purpose of the present study was to survey current practice in Scandinavia. Thirteen paediatric surgical centres serving a population of about 22 million were invited, and all participated. One questionnaire was completed at each centre. The questionnaire evaluated management following prenatal diagnosis, intensive care strategies, operative treatment, and long-term follow-up. Survival data (1995-1998) were available from 12 of 13 centres. Following prenatal diagnosis of CDH, vaginal delivery and maternal steroids were used at eight and six centres, respectively. All centres used high-frequency oscillation ventilation (HFOV), nitric oxide (NO), and surfactant comparatively often. Five centres had extracorporeal membrane oxygenation (ECMO) facilities, and four centres transferred ECMO candidates. The majority of centres (7/9) always tried HFOV before ECMO was instituted. Surgery was performed when the neonate was clinically stable (11/13) and when no signs of pulmonary hypertension were detected by echo-Doppler (6/13). The repair was performed by laparotomy at all centres and most commonly with nonabsorbable sutures (8/13). Thoracic drain was used routinely at seven centres. Long-term follow-up at a paediatric surgical centre was uncommon (3/13). Only three centres treated more than five CDH patients per year. Comparing survival in centres treating more than five with those treating five or fewer CDH patients per year, there was a tendency towards better survival in the higher-volume centres (72.4%) than in the centres with lower volume (58.7%), p =0.065.
PubMed ID
15156335 View in PubMed
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Congenital diaphragmatic hernia in Scandinavia from 1995 to 1998: Predictors of mortality.

https://arctichealth.org/en/permalink/ahliterature188863
Source
J Pediatr Surg. 2002 Sep;37(9):1269-75
Publication Type
Article
Date
Sep-2002
Author
Hans Skari
Kristin Bjornland
Bjorn Frenckner
Lars Goran Friberg
Marja Heikkinen
Timo Hurme
Borger Loe
Gunnhild Mollerlokken
Ole Henrik Nielsen
Niels Qvist
Risto Rintala
Katarina Sandgren
Tomas Wester
Ragnhild Emblem
Author Affiliation
Departments of Pediatric Surgery at Rikshospitalet University Hospital, Oslo, Norway; Karolinska Hospital, Stockholm, Sweden.
Source
J Pediatr Surg. 2002 Sep;37(9):1269-75
Date
Sep-2002
Language
English
Publication Type
Article
Keywords
Cohort Studies
Hernia, Diaphragmatic - congenital - mortality - surgery
Humans
Infant
Infant, Newborn
Postoperative Complications - epidemiology
Proportional Hazards Models
Retrospective Studies
Risk factors
Scandinavia - epidemiology
Survival Rate
Abstract
There is a lack of large contemporary studies on the management of congenital diaphragmatic hernia (CDH), and the prediction of mortality remains difficult. The aim of this study was to investigate the influence of perinatal factors on mortality rate in a contemporary multicenter study.
The authors conducted a retrospective multicenter cohort study. Twelve of 13 Scandinavian pediatric surgical centers participated in the study. During a 4-year period (1995 through 1998) 195 children with CDH were included. The main endpoints were hospital mortality rate and total mortality rate (before 2001). Bivariate and multivariate survival analyses were performed using Kaplan-Meier plots, Log-rank test, and Cox regression.
Overall hospital mortality rate was 30%. Among 168 neonates with symptoms within 24 hours (early presenters) 35% died before discharge. All 61 deaths occurred in 157 neonates with symptoms within the first 2 hours of life. Among early presenters, 27% had prenatal ultrasound diagnosis, 26% were delivered by cesarean section, and 21% had associated major malformations. Bivariate analysis of early presenters showed increased risk of death in neonates with prenatal diagnosis, associated anomalies, right-sided diaphragmatic hernia (RCDH), low 1-minute and 5-minute Apgar scores, low birth weight, short gestational age, and cesarean delivery. Neonates with prenatal diagnosis were characterized by significantly lower Apgar scores, lower birth weight, and increased frequency of associated anomalies than those diagnosed after birth. Multivariate analysis found that prenatal diagnosis (P =.004), 1-minute Apgar (P =.001), and RCDH (P =.042) were independent predictors of total mortality rate.
In a series of 195 CDH patients, all 61 deaths occurred in the 157 neonates presenting with symptoms within the first 2 hours of life. Prenatal diagnosis, 1-minute Apgar score, and RCDH were significant independent predictors of total mortality.
PubMed ID
12194115 View in PubMed
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A gender perspective on the extent to which mothers and fathers each take responsibility for care of a child with high and intermediate imperforate anus.

https://arctichealth.org/en/permalink/ahliterature150780
Source
J Pediatr Nurs. 2009 Jun;24(3):207-15
Publication Type
Article
Date
Jun-2009
Author
Maria Ojmyr-Joelsson
Margret Nisell
Björn Frenckner
Per-Anders Rydelius
Kyllike Christensson
Author Affiliation
Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm, Sweden. maria.ojmyr-joelsson@karolinska.se
Source
J Pediatr Nurs. 2009 Jun;24(3):207-15
Date
Jun-2009
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Anus, Imperforate - prevention & control - surgery
Arthritis, Juvenile - prevention & control
Attitude to Health
Child
Child Care - psychology
Chronic Disease
Fathers - psychology
Female
Gender Identity
Home Nursing - psychology
Hospitals, Pediatric
Humans
Logistic Models
Male
Mothers - psychology
Nursing Methodology Research
Questionnaires
Retrospective Studies
Social Responsibility
Statistics, nonparametric
Sweden
Abstract
Imperforate anus is a malformation of the child's anus. Parents' experiences of responsibility for care of the child may differ. The aim of this study was to evaluate a gender perspective on the extent to which mothers and fathers each take responsibility for the care of a child with high and intermediate imperforate anus. Parents of children with imperforate anus and two control groups of children and parents participated. Data collection with questionnaires focusing on responsibility was performed. In conclusion, our study revealed additional evidence of unevenly divided parental responsibility for care of a child with a chronic condition. The mothers in this study were shown to be the primary caregiver.
PubMed ID
19467434 View in PubMed
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[High survival rate among newborns with congenital diaphragmatic hernia. 20-year follow up of patients treated in Stockholm].

https://arctichealth.org/en/permalink/ahliterature125736
Source
Lakartidningen. 2012 Feb 8-14;109(6):287-91
Publication Type
Article

How a family is affected when a child is born with anorectal malformation. Interviews with three patients and their parents.

https://arctichealth.org/en/permalink/ahliterature30416
Source
J Pediatr Nurs. 2003 Dec;18(6):423-32
Publication Type
Article
Date
Dec-2003
Author
Margret Nisell
Maria Ojmyr-Joelsson
Björn Frenckner
Per-Anders Rydelius
Kyllike Christensson
Author Affiliation
Department of Woman and Child Health, Child and Adolescent Psychiatric Unit, Karolinska Institutet, Stockholm, Sweden. margret.nisell@ks.se
Source
J Pediatr Nurs. 2003 Dec;18(6):423-32
Date
Dec-2003
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adolescent Psychology
Adolescent, Hospitalized - psychology
Adult
Anus, Imperforate - psychology - therapy
Attitude to Health
Child
Child Psychology
Child, Hospitalized - psychology
Cost of Illness
Depressive Disorder - etiology - psychology
Family Health
Female
Hospitals, Pediatric
Humans
Male
Nurse's Role
Nursing Methodology Research
Parents - psychology
Pediatric Nursing
Qualitative Research
Questionnaires
Stress, Psychological - psychology
Sweden
Abstract
Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents' experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children's experiences. The children and their parents need special care and an opportunity to express their anxieties.
PubMed ID
15058540 View in PubMed
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Impact of radiologic imaging on the surgical decision-making process in suspected appendicitis in children.

https://arctichealth.org/en/permalink/ahliterature178542
Source
Acad Radiol. 2004 Sep;11(9):971-9
Publication Type
Article
Date
Sep-2004
Author
Sylvie Kaiser
Håkan Jorulf
Erik Söderman
Björn Frenckner
Author Affiliation
Department of Pediatric Radiology, Astrid Lindgren Children's Hospital, Karolinska University Hospital, SE-171 76 Stockholm, Sweden. sylvie.kaiser@kus.se
Source
Acad Radiol. 2004 Sep;11(9):971-9
Date
Sep-2004
Language
English
Publication Type
Article
Keywords
Adolescent
Appendectomy
Appendicitis - diagnosis - radiography - surgery - ultrasonography
Child
Child Welfare
Child, Preschool
Decision Making
Diagnosis, Differential
False Positive Reactions
Female
Follow-Up Studies
Humans
Image Interpretation, Computer-Assisted
Image Processing, Computer-Assisted
Male
Prospective Studies
Radiographic Image Enhancement
Sensitivity and specificity
Sweden
Tomography, X-Ray Computed
Ultrasonography, Interventional
Abstract
To evaluate how the surgeons' decision-making process in appendicitis in children is affected by radiologic imaging.
Prospective study including 593 children with suspected appendicitis was conducted. The surgeon's initial clinical disposition was recorded, designating the patient for operation, observation, or discharge. Thereafter, the patients were randomized to undergo either ultrasound only or ultrasound and abdominal computed tomography. The studies were evaluated by radiologists, who indicated if appendicitis was present or not. After radiology was completed, the surgeon re-examined the patient and made the final disposition. The change of disposition pathway was recorded. Final diagnoses were established by means of surgical, histopathologic, and/or clinical follow-up findings.
Two hundred forty-four patients had appendicitis. The initial clinical disposition called for 88 operations, 338 observations, and 167 discharges. In total, 347 patients had their treatment plan changed from the initial disposition, resulting in 252 operations, 65 observations, and 276 discharges. In 11 patients, an unnecessary operation was possibly avoided. In 28 patients who turned out to have appendicitis, a possible inappropriate discharge was avoided. Eighteen patients had a false-negative radiologic diagnosis. Of these, 17 underwent surgery because of convincing clinical findings. The difference between the impact on surgeons' decision-making between the two randomized groups was not substantially different. The negative appendectomy rate was 3.7%.
Radiologic imaging with ultrasound and/or computed tomography provides valuable guidance whether a patient should be discharged, observed, or given surgical treatment, leading to beneficial changes in management plan. Still, false-negative results may occur and a close clinical re-examination is of utmost importance for the appropriate final decision.
PubMed ID
15350578 View in PubMed
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Long-Term Survival in Adults Treated With Extracorporeal Membrane Oxygenation for Respiratory Failure and Sepsis.

https://arctichealth.org/en/permalink/ahliterature282760
Source
Crit Care Med. 2017 Feb;45(2):164-170
Publication Type
Article
Date
Feb-2017
Author
Viktor von Bahr
Jan Hultman
Staffan Eksborg
Björn Frenckner
Håkan Kalzén
Source
Crit Care Med. 2017 Feb;45(2):164-170
Date
Feb-2017
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Cause of Death
Extracorporeal Membrane Oxygenation - mortality
Female
Humans
Kaplan-Meier Estimate
Male
Middle Aged
Respiratory Insufficiency - mortality - therapy
Retrospective Studies
Sepsis - mortality - therapy
Survival Analysis
Sweden - epidemiology
Young Adult
Abstract
The use of extracorporeal membrane oxygenation in adults with respiratory failure and sepsis is steadily increasing, but the knowledge on long-term survival in this group is scarce. The aim of the present study was to investigate the 5-year survival rates and causes of late death in this group of patients.
Single-center retrospective cohort study.
Karolinska University Hospital, Stockholm, Sweden.
Adult patients treated with extracorporeal membrane oxygenation for respiratory failure and sepsis between the service being established for adults in 1995 and December 2013.
None.
Survival status was attained from a national Causes of Death registry. Minimal patient background data, along with data on survival and causes of death were collected. Survival rates were calculated using the Kaplan-Meier method. Of 255 subjects, 64% survived to discharge. The median follow-up time in survivors was 4.4 years. There was a high mortality rate within the first months after discharge. In the group of patients who survived the first 90 days after treatment, the 5-year survival rate was 87% and was particularly beneficial in patients treated for infectious diseases (88-100%). Late deaths were seen in most diagnostic groups, but the Kaplan-Meier curves flattened out over time.
Extracorporeal membrane oxygenation treatment in adult patients with respiratory failure and sepsis can be lifesaving in appropriately selected patients. For patients who survive the first months after extracorporeal membrane oxygenation treatment, long-term survival seems good, especially in patients treated for infections.
PubMed ID
28098624 View in PubMed
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Low Pulmonary Expression of Epithelial Na Channel and Na(+), K(+)-ATPase in Newborn Infants with Congenital Diaphragmatic Hernia.

https://arctichealth.org/en/permalink/ahliterature96512
Source
Neonatology. 2010 Jun 30;99(1):14-22
Publication Type
Article
Date
Jun-30-2010
Author
Andreas Ringman Uggla
Katarina von Schewelov
Marina Zelenina
Anita Aperia
Björn Frenckner
Author Affiliation
Nordic Centre of Excellence for Research in Water Imbalance Related Disorders (WIRED), Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden.
Source
Neonatology. 2010 Jun 30;99(1):14-22
Date
Jun-30-2010
Language
English
Publication Type
Article
Abstract
Background: It has been suggested from several animal studies and clinical observations that congenital diaphragmatic hernia (CDH) with pulmonary hypoplasia is accompanied by a disturbed perinatal ion transport. This could lead to respiratory distress due to slower clearance of fetal lung fluid at birth. Objectives: The purpose of this study was to determine whether CDH is related to changes in the expression of three rate-limiting transporter proteins in lung epithelium at birth. Methods: Tracheal aspirate was collected from 12 newborn infants with CDH and from 8 newborn control patients. Sampling was performed at postnatal age 18 and at 43 h in the CDH group and at 18 h in the control group. The protein abundance of alpha-, beta- and gamma-epithelial Na(+) channel (ENaC), aquaporin 5 and Na(+), K(+)-ATPase alpha(1) was analyzed using semiquantitative immunoblotting. Results: The levels of beta-ENaC, gamma-ENaC and Na(+), K(+)-ATPase alpha(1) collected at 18 h postnatally were significantly lower in CDH infants compared to control infants. In the CDH group, no significant difference in the expression of the ENaC subunits, Na(+), K(+)-ATPase alpha(1) or aquaporin 5 could be detected between the two sampling time points. Conclusions: This downregulation may result in an abnormal lung fluid absorption which could be an important mechanism behind the respiratory distress seen in newborn CDH patients.
PubMed ID
20588066 View in PubMed
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15 records – page 1 of 2.