Pernilla Stenström - Profile on Academia.edu (original) (raw)

Papers by Pernilla Stenström

Development of a core descriptor set for Crohn's anal fistula

Colorectal Disease

AimCrohn's anal fistula (CAF) is a complex condition, with no agreement on which patient char... more AimCrohn's anal fistula (CAF) is a complex condition, with no agreement on which patient characteristics should be routinely reported in studies. The aim of this study was to develop a core descriptor set of key patient characteristics for reporting in all CAF research.MethodCandidate descriptors were generated from published literature and stakeholder suggestions. Colorectal surgeons, gastroenterologists and specialist nurses in inflammatory bowel disease took part in three rounds of an international modified Delphi process using nine‐point Likert scales to rank the importance of descriptors. Feedback was provided between rounds to allow refinement of the next ratings. Patterns in descriptor voting were assessed using principal component analysis (PCA). Resulting PCA groups were used to organize items in rounds two and three. Consensus descriptors were submitted to a patient panel for feedback. Items meeting predetermined thresholds were included in the final set and ratified a...

Journal of Surgery: Open Access, 2016

Single-incision laparoscopic appendectomy (SILA) has gained popularity in children, and several d... more Single-incision laparoscopic appendectomy (SILA) has gained popularity in children, and several different techniques have been described, including intracorporeal and extracorporeal techniques and single-channel and multi-channel single-port techniques. However, there has been a concern that exteriorizing an infected appendix through the umbilical channel would increase the risk of postoperative wound infections. This report aims to describe a technique for single-port laparoscopy-assisted appendectomy (SPLAA) using an operative laparoscope and conventional laparoscopic instruments, as well as a VersaStep™ sheath to protect the wound edge while removing the appendix from the abdomen.

Journal of Internal Medicine, 2000

Objectives. To estimate the total direct medical costs to society for patients with type 2 diabet... more Objectives. To estimate the total direct medical costs to society for patients with type 2 diabetes in Sweden and to investigate how different factors, for example diabetic late complications, affect costs. Design. Cross-sectional data regarding health care utilization, clinical characteristics and quality of life, were collected at a single time-point. Data on resource use cover the 6-month period prior to this time point. Setting. Patient recruitment and data collection were performed in nine primary care centres in three main regions in Sweden. Subjects. Only patients with an age at diabetes diagnosis $ 30 years (type 2 diabetes) were included (n = 777). Results. The total annual direct medical costs for the Swedish diabetes type 2 population were estimated at about 7 billion SEK (Swedish Kronor) in 1998 prices, which is about 6% of the total health care expenditures and more than four times higher than the former Swedish estimate obtained when using diabetes as main diagnosis for calculating costs. The annual per patient cost was about 25 000 SEK. The largest share of this cost was hospital inpatient care. Costs increased with diabetes duration and were higher for patients treated with insulin compared to those treated with oral hypoglycaemic drugs or with life style modification only. Patients with both macroand microvascular complications had more than three times higher costs compared with patients without such complications. Conclusions. Type 2 diabetes is a serious and expensive disease and the key to reducing costs seems to be intensive management and control in order to prevent and delay the associated late complications.

BMC Pediatrics

Background A specific eHealth device, a surf tablet, was developed for bridging between advanced ... more Background A specific eHealth device, a surf tablet, was developed for bridging between advanced in-hospital care and children’s homes. Since little is known about determinators for parental eHealth usage, the study’s aim was to explore if parents’ usage of the device was associated with their eHealth literacy, or their satisfaction with their child’s healthcare or with the specific surf tablet. Methods In this explorative usage and questionnaire study, parents to neonates who were discharged home after advanced in-hospital care were included. Their surf tablet usage at maximum 30 days after discharge was reported as frequency (%) of active days (usage days/days having the device) and median number of tablet activities (chat and photo) per usage day. eHealth literacy (eHealth Literacy Questionnaire; eHLQ), healthcare satisfaction (PedsQL Healthcare Satisfaction Generic Module), and satisfaction with the surf tablet were explored regarding tablet usage. Statistics were described in m...

High-grade vesicoureteral reflux in patients with anorectal malformation from the ARM-Net registry: Is our screening sufficient?

Journal of Pediatric Surgery, Dec 31, 2023

BMC Pediatrics, May 17, 2023

Background Optimizing rectal suction biopsy (RSB) diagnostics in Hirschsprung's disease (HD) may ... more Background Optimizing rectal suction biopsy (RSB) diagnostics in Hirschsprung's disease (HD) may shorten diagnostic time and prevent need for repeated biopsies. Aim To explore whether systematic orientation of fresh RSB specimens increased biopsy quality, diagnostic times, diagnostic efficacy, and histopathologic workload, and to explore these outcome measures for aganglionic specimens. Materials/Methods This was an observational case-control study conducted at a national referral center for HD on data collected from the local HD-diagnostic register. From 2019 each fresh RSB was oriented by the collector in a notch in a foam cushion, placed in a separate cassette, and sent in formalin for pathological analysis. Outcome measures of oriented RSB samples collected 2019-2021 were compared to those of non-oriented RSB samples collected 2015-2018. Staining/immunohistochemistry consisted of hematoxylin eosin, S-100 and calretinin. Results 78 children with 81 RSBs and 242 biopsy analyzes were included. The frequency of high-quality RSB specimens was higher in oriented: 40% (42/106) versus non-oriented 25% (34/136) (p = 0.018), the diagnostic turnaround time was shorter: 2 days (1-5) versus 3 days (2-8) (p = 0.015), and the number of additional sectioning/ leveling/re-orientation per biopsy was lower: 7 (3-26) versus 16 (7-72) (p = 0.011). Specifically for aganglionic specimens, the frequency of high-quality biopsies was generally higher in oriented than in non-oriented RSB specimens: 47% (28/59) versus 14% (7/50) (p < 0.001); the diagnostic efficacy was higher 95% (19/20) versus 60% (9/15) (p = 0.027) and the diagnostic turnaround time shorter: 2 days (2-3) versus 3 days (2-8) (p = 0.036). Conclusions Systematic orientation of fresh RSB specimens improves HD diagnostics. Improvement was consistent in aganglionic specimens.

Perfusion monitoring using laser speckle contrast imaging during endorectal pull-through for Hirschsprung's disease

Journal of pediatric surgery case reports, Dec 1, 2021

A nordic multicenter study on contemporary outcomes of pediatric short bowel syndrome in 208 patients

Clinical Nutrition, Jul 1, 2023

Bowel control, bladder function, and quality of life in children with cloacal malformations

Journal of Pediatric Surgery, Dec 1, 2022

BMC Nutrition, Jun 28, 2023

Background Although dietary adjustments are recommended frequently for bowel symptoms, evidence o... more Background Although dietary adjustments are recommended frequently for bowel symptoms, evidence of diet's impact on bowel function is lacking. The aim was to develop a patient-reported outcome instrument, for children with and without Hirschsprung's disease (HD), to explore experiences of dietary effects on bowel function. Methods Children with and without HD and their parents participated. Questionnaire items regarding the impact of diet on bowel function originated from focus group discussions. Specific food items, reported in the literature or in focus groups to cause bowel functional effects, were listed requesting each item's effect size and effect type. Content validity was tested within two separate semistructured interviews. A pilot test was performed. Assessing comprehension, relevance and wording clarity structurally, revisions were made accordingly. Children's bowel function was assessed through the validated Rintala Bowel Function Score. Results A total of 13 children with and without HD, median age 7 (range 2-15) years, and 18 parents participated in the validation. Each question's relevance had been ranked highly early in the validation process but most questions needed refining for improving clarity and comprehension. Wordings regarding bowel symptoms and emotions connected to food in particular were perceived to be sensitive and complex. Specifically wording regarding some bowel symptoms (gases, pain) and parental stress emotions (guilt, ambivalence) were, consistent with participants' opinions, subjected to multiple step revisions. Following the validation process, which included two semistructure interviews with different participants and then a pilot test with a third cohort, a full track overview of changes and rewording made in all steps of the validation process was presented. The final questionnaire then comprised 13 questions assessing foods' significance for bowel function, emotions, social impact and 90 specific food items' possible effects and effect sizes on bowel function. Conclusions The Diet and Bowel Function questionnaire, enabling answering by children, was developed and the content validated qualitatively. This report presents insights into the whole validation process, declaring reasons for the selected question-and answering options, and their wordings. The Diet and Bowel Function questionnaire can be used as a survey questionnaire to enhance understanding of dietary effects on bowel function in children, and its results can be supportive in improving dietary-treatment programs.

Research Square (Research Square), May 9, 2023

Background: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbi... more Background: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health di culties. No previous study has investigated their experiences of schooling, despite the importance of schools in children's development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden. Method: Twenty-six children with LGEA aged 3-17 were recruited nationwide in Sweden. One parent completed a survey on their child's school-based supports (according to de nitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Di culties Questionnaire) and current symptomatology. School data were compared to that from 95 children with EA who had primary anastomosis (PA), a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal≥90 percentile. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Signi cance level was p<0.05. Results: Seventeen children with LGEA (65.4%) had formal school-based support concerning nutritional intake (60%), educational needs (50%) and medical/special health needs (35%), which was signi cantly more frequent compared to children with PA overall (36.8%, p=0.013) and regarding nutritional intake support in school (20%, p< 0.001). In children with LGEA, school-based support was related to low birth weight (p=0.036), young child age (p=0.014), height ≤-2SD for age/sex (p=0.024) and an increased number of aerodigestive symptoms (p<0.05). All children with LGEA who had abnormal scores of mental health, except for one child, had school-based support. Nine children with LGEA (36%) had school absence ≥1times/month the past year, more frequently because of colds/airway infections (p=0.045) and gastro-intestinal related problems compared to PA (p=0.003). School functioning scores were not signi cantly different from children with PA (p=0.34) but correlated negatively with school-based support (<0.001) and school absence (p=0.002). One parent out of 26 reported their child's school satisfaction as "not good". Conclusions: Children with LGEA commonly receive school-based support, re ecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Collaborative strategies between specialized health care providers and schools are needed to accommodate for their disease-speci c needs in school. Future research focusing on academic achievement in children with EA is needed. Children with intellectual disability can attend special schools[26]. The Swedish Education Act[27] provides every child the right to have support to optimize their development and learning and achieve the knowledge requirements for each grade. There are two main categories of school-based support in the Swedish mainstream schools; "special" support and school-based accommodations. "Special" support is a part of the pupil's action plan, has longer duration, includes greater interventions in the school which are not possible to conduct by the ordinary teachers/school staff and its implementation needs a formal decision from the principal. School-based accommodations refers to a less intensive support, which is provided by ordinary teachers and school staff, without the need for a formal decision by the principal [28]. In the Swedish compulsory school, 5.8% of the pupils had an action plan as a part of special schoolbased support in year 2021/2022[29]. Children with LGEA Children were considered to have LGEA when primary anastomosis was not achievable at the rst operation because it was too far between esophageal segments and were recruited nationwide through collaboration with all four Swedish pediatric surgical centers, where the children were surgically treated and offered follow-up care. Inclusion criteria were child ages 2-18 years, respondents uent in written and spoken Swedish, written informed consent by children aged ≥ 15 and legal guardians of all children. Exclusion criteria was delayed reconstruction of EA only due to prematurity/low birth weight. Out of 38 families of children with LGEA, 30 families received written study information, consent form and the questionnaires for this study (see Fig. 1). Data was collected from mid-January to March in 2020, then was paused due to the Covid-19 pandemic. The last four replies were collected between February and April in 2021. Comparison group; children with Gross type C who underwent primary anastomosis Ninety-ve children with Gross EA type C who underwent primary anastomosis (PA) at Sahlgrenska University Hospital, Gothenburg and participated in an earlier studies of school support and school functioning (> 90% response rate) from 2017-2019 [19, 30, 31] served as an hypothesized milder affected comparison group for children with LGEA regarding available school data. Clinical data A researcher at each study center reviewed medical records for birth characteristics, anatomical subtype of EA, associated anomalies, surgical interventions, postoperative outcomes, including the latest anthropometric growth measurement with date for measurement, weight and height values, norm SD values for child age and sex. Information on the child's airway and digestive problems the past four weeks was collected through a parent-reported questionnaire.

Prevalence of mental health problems, associated factors, and health-related quality of life in children with long-gap esophageal atresia in Sweden

Journal of Pediatric Surgery, Dec 1, 2022

British Journal of Surgery, Jul 14, 2014

Background: Serial transverse enteroplasty (STEP) was first described in 2003 as a method for len... more Background: Serial transverse enteroplasty (STEP) was first described in 2003 as a method for lengthening and tapering of the bowel in short bowel syndrome. The aim of this multicentre study was to review the outcome of a Swedish cohort of children who underwent STEP. Methods: All children who had a STEP procedure at one of the four centres of paediatric surgery in Sweden between September 2005 and January 2013 were included in this observational cohort study. Demographic details, and data from the time of STEP and at follow-up were collected from the case records and analysed. Results: Twelve patients had a total of 16 STEP procedures; four children underwent a second STEP. The first STEP was performed at a median age of 5⋅8 (range 0⋅9-19⋅0) months. There was no death at a median follow-up of 37⋅2 (range 3⋅0-87⋅5) months and no child had small bowel transplantation. Seven of the 12 children were weaned from parenteral nutrition at a median of 19⋅5 (range 2⋅3-42⋅9) months after STEP. Conclusion: STEP is a useful procedure for selected patients with short bowel syndrome and seems to facilitate weaning from parenteral nutrition. At mid-term follow-up a majority of the children had achieved enteral autonomy. The study is limited by the small sample size and lack of a control group.

Self-reported effects of diet on gastrointestinal symptoms in healthy children

Journal of Pediatric Gastroenterology and Nutrition, Jul 5, 2023

Journal of Pediatric Surgery, Aug 1, 2019

This study was done to assess the functional and clinical results after one year of cemented THR ... more This study was done to assess the functional and clinical results after one year of cemented THR with dual mobility cup for the treatment of fracture neck femur in active middle-aged patients in Egypt (Middle Eastern population). Patients and methods: This study included 31 patients (32 hips) with displaced femoral neck fractures that were admitted to

Children

Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied ... more Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied by GI complaints. Despite the lack of evidence regarding whether diet affects GI symptoms, advice on dietary changes is common. The aim was to investigate self-reported dietary effects on GI symptoms, comparing children with HD with healthy children. This was an observational, cross-sectional, self-reported case-control study using the validated Diet and Bowel Function questionnaire. All children with HD aged 1–18 years were surgically treated during 2003–2021 at a national HD center, and their parents were invited to participate. Healthy children served as controls. The data were presented as median (range) and n (%). 71/85 children with HD (6 years (1–17); 76% boys) and 265/300 controls (9 years (1–18); 52% boys) participated. Dietary effects on GI symptoms were reported more frequently by children with HD than controls (55/71 [77%] vs. 137/265 [52%], p ≤ 0.001), as were dietary adjust...

Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

Journal of Pediatric Surgery

British Journal of Surgery, 2021

Background In a nationwide cohort the potentially protective association between allergy and comp... more Background In a nationwide cohort the potentially protective association between allergy and complicated appendicitis was analysed, and the influence of seasonal antigens, antihistamine treatment, and timing of allergy onset assessed. Methods Some 1 112 571 children born between 2000 and 2010 were followed from birth until the end of 2014. A cross-sectional analysis of appendicitis cases, with comparison of allergic versus non-allergic children for absolute risk and odds of complicated appendicitis was first undertaken. This was followed by a longitudinal analysis of children with allergy and matched controls who had never had an allergy, for incidence rate and hazard of subsequent complicated or simple appendicitis. Results Of all children, 20.4 per cent developed allergy and 0.6 per cent had appendicitis during follow-up. Among children with appendicitis, complicated appendicitis was more common among non-allergic children (18.9 per cent, 948 of 5016) than allergic children (12.8 ...

Journal of Pediatric Surgery, 2018

Aim Perineal hemangiomas rarely occur in patients with anorectal malformations (ARM), but they ca... more Aim Perineal hemangiomas rarely occur in patients with anorectal malformations (ARM), but they can pose a significant challenge and warrant special attention. Surgical incision of posterior sagittal anorectoplasty (PSARP) may involve the hemangioma site resulting in hemorrhage, damage to blood supply, leading to complications and adversely affect outcome. The aim of this study was to review the experience of the ARM-Net consortium in the management of perineal hemangioma associated with ARM and evaluate treatment strategies. Materials and Methods Data on all patients with ARM and a perineal hemangioma located in the planes of the PSARP dissection who were managed at participating ARM-Net centers were collected retrospectively by questionnaire, as follows: ARM type, hemangioma distribution and penetration, imaging findings, medical/surgical management, timing of definitive repair, complications and outcome. Results Ten patients from eight centers were included. Three patients each had a rectobulbar or rectovestibular fistula, 2 had a rectoperineal fistula, and one had a rectoprostatic fistula; in one patient, the hemangioma was too disfiguring to determine malformation type. Mean follow-up time was 36.6 months (median 29 months). Colostomies were performed before definitive repair in 8 patients. Five patients received systemic beta-blockers before PSARP: 3 were operated uneventfully following partial/complete involution of the hemangioma, and 2 are awaiting surgery. The two patients with rectoperineal fistula were managed expectantly. The remaining 3 patients underwent surgery with no preoperative medical treatment, and all had complications: mislocated neoanus in three and complete perineal dehiscence in one. Conclusion Attempting PSARP in the presence of a perineal hemangioma may lead to complications and adversely affect outcome. This study confirms the benefits of beta blocker treatment before surgical reconstruction.

Perineal Groove: An Anorectal Malformation Network, Consortium Study

The Journal of Pediatrics, 2020

OBJECTIVE To review the Anorectal Malformation Network experience with perineal groove (PG) focus... more OBJECTIVE To review the Anorectal Malformation Network experience with perineal groove (PG) focusing on its clinical characteristics and management. STUDY DESIGN Data on patients with PG managed at 10 participating Anorectal Malformation Network centers in 1999-2019 were collected retrospectively by questionnaire. RESULTS The cohort included 66 patients (65 females) of median age 1.4 months at diagnosis. The leading referral diagnosis was anal fissure (n = 20 [30.3%]): 23 patients (34.8%) had anorectal malformations. Expectant management was practiced in 47 patients (71.2%). Eight (17%) were eventually operated for local complications. The median time to surgery was 14 months (range, 3.0-48.6 months), and the median age at surgery was 18.3 months (range, 4.8-58.0 months). In the 35 patients available for follow-up of the remaining 39 managed expectantly, 23 (65.7%) showed complete or near-complete self-epithelization by a mean age 15.3 months (range, 1-72 months) and 4 (11.4%) showed partial self-epithelization by a mean age 21 months (range, 3-48 months). Eight patients showed no resolution (5 were followed for ≤3 months). Nineteen patients (28.7%) were primarily treated with surgery. In total, 27 patients were operated. Dehiscence occurred in 3 of 27 operated patients (11.1%). CONCLUSIONS PG seems to be an underestimated anomaly, frequently associated with anorectal malformations. Most cases heal spontaneously; therefore, expectant management is recommended. When associated with anorectal malformations requiring reconstruction, PG should be excised in conjunction with the anorectoplasty.

Development of a core descriptor set for Crohn's anal fistula

Colorectal Disease

AimCrohn's anal fistula (CAF) is a complex condition, with no agreement on which patient char... more AimCrohn's anal fistula (CAF) is a complex condition, with no agreement on which patient characteristics should be routinely reported in studies. The aim of this study was to develop a core descriptor set of key patient characteristics for reporting in all CAF research.MethodCandidate descriptors were generated from published literature and stakeholder suggestions. Colorectal surgeons, gastroenterologists and specialist nurses in inflammatory bowel disease took part in three rounds of an international modified Delphi process using nine‐point Likert scales to rank the importance of descriptors. Feedback was provided between rounds to allow refinement of the next ratings. Patterns in descriptor voting were assessed using principal component analysis (PCA). Resulting PCA groups were used to organize items in rounds two and three. Consensus descriptors were submitted to a patient panel for feedback. Items meeting predetermined thresholds were included in the final set and ratified a...

Journal of Surgery: Open Access, 2016

Single-incision laparoscopic appendectomy (SILA) has gained popularity in children, and several d... more Single-incision laparoscopic appendectomy (SILA) has gained popularity in children, and several different techniques have been described, including intracorporeal and extracorporeal techniques and single-channel and multi-channel single-port techniques. However, there has been a concern that exteriorizing an infected appendix through the umbilical channel would increase the risk of postoperative wound infections. This report aims to describe a technique for single-port laparoscopy-assisted appendectomy (SPLAA) using an operative laparoscope and conventional laparoscopic instruments, as well as a VersaStep™ sheath to protect the wound edge while removing the appendix from the abdomen.

Journal of Internal Medicine, 2000

Objectives. To estimate the total direct medical costs to society for patients with type 2 diabet... more Objectives. To estimate the total direct medical costs to society for patients with type 2 diabetes in Sweden and to investigate how different factors, for example diabetic late complications, affect costs. Design. Cross-sectional data regarding health care utilization, clinical characteristics and quality of life, were collected at a single time-point. Data on resource use cover the 6-month period prior to this time point. Setting. Patient recruitment and data collection were performed in nine primary care centres in three main regions in Sweden. Subjects. Only patients with an age at diabetes diagnosis $ 30 years (type 2 diabetes) were included (n = 777). Results. The total annual direct medical costs for the Swedish diabetes type 2 population were estimated at about 7 billion SEK (Swedish Kronor) in 1998 prices, which is about 6% of the total health care expenditures and more than four times higher than the former Swedish estimate obtained when using diabetes as main diagnosis for calculating costs. The annual per patient cost was about 25 000 SEK. The largest share of this cost was hospital inpatient care. Costs increased with diabetes duration and were higher for patients treated with insulin compared to those treated with oral hypoglycaemic drugs or with life style modification only. Patients with both macroand microvascular complications had more than three times higher costs compared with patients without such complications. Conclusions. Type 2 diabetes is a serious and expensive disease and the key to reducing costs seems to be intensive management and control in order to prevent and delay the associated late complications.

BMC Pediatrics

Background A specific eHealth device, a surf tablet, was developed for bridging between advanced ... more Background A specific eHealth device, a surf tablet, was developed for bridging between advanced in-hospital care and children’s homes. Since little is known about determinators for parental eHealth usage, the study’s aim was to explore if parents’ usage of the device was associated with their eHealth literacy, or their satisfaction with their child’s healthcare or with the specific surf tablet. Methods In this explorative usage and questionnaire study, parents to neonates who were discharged home after advanced in-hospital care were included. Their surf tablet usage at maximum 30 days after discharge was reported as frequency (%) of active days (usage days/days having the device) and median number of tablet activities (chat and photo) per usage day. eHealth literacy (eHealth Literacy Questionnaire; eHLQ), healthcare satisfaction (PedsQL Healthcare Satisfaction Generic Module), and satisfaction with the surf tablet were explored regarding tablet usage. Statistics were described in m...

High-grade vesicoureteral reflux in patients with anorectal malformation from the ARM-Net registry: Is our screening sufficient?

Journal of Pediatric Surgery, Dec 31, 2023

BMC Pediatrics, May 17, 2023

Background Optimizing rectal suction biopsy (RSB) diagnostics in Hirschsprung's disease (HD) may ... more Background Optimizing rectal suction biopsy (RSB) diagnostics in Hirschsprung's disease (HD) may shorten diagnostic time and prevent need for repeated biopsies. Aim To explore whether systematic orientation of fresh RSB specimens increased biopsy quality, diagnostic times, diagnostic efficacy, and histopathologic workload, and to explore these outcome measures for aganglionic specimens. Materials/Methods This was an observational case-control study conducted at a national referral center for HD on data collected from the local HD-diagnostic register. From 2019 each fresh RSB was oriented by the collector in a notch in a foam cushion, placed in a separate cassette, and sent in formalin for pathological analysis. Outcome measures of oriented RSB samples collected 2019-2021 were compared to those of non-oriented RSB samples collected 2015-2018. Staining/immunohistochemistry consisted of hematoxylin eosin, S-100 and calretinin. Results 78 children with 81 RSBs and 242 biopsy analyzes were included. The frequency of high-quality RSB specimens was higher in oriented: 40% (42/106) versus non-oriented 25% (34/136) (p = 0.018), the diagnostic turnaround time was shorter: 2 days (1-5) versus 3 days (2-8) (p = 0.015), and the number of additional sectioning/ leveling/re-orientation per biopsy was lower: 7 (3-26) versus 16 (7-72) (p = 0.011). Specifically for aganglionic specimens, the frequency of high-quality biopsies was generally higher in oriented than in non-oriented RSB specimens: 47% (28/59) versus 14% (7/50) (p < 0.001); the diagnostic efficacy was higher 95% (19/20) versus 60% (9/15) (p = 0.027) and the diagnostic turnaround time shorter: 2 days (2-3) versus 3 days (2-8) (p = 0.036). Conclusions Systematic orientation of fresh RSB specimens improves HD diagnostics. Improvement was consistent in aganglionic specimens.

Perfusion monitoring using laser speckle contrast imaging during endorectal pull-through for Hirschsprung's disease

Journal of pediatric surgery case reports, Dec 1, 2021

A nordic multicenter study on contemporary outcomes of pediatric short bowel syndrome in 208 patients

Clinical Nutrition, Jul 1, 2023

Bowel control, bladder function, and quality of life in children with cloacal malformations

Journal of Pediatric Surgery, Dec 1, 2022

BMC Nutrition, Jun 28, 2023

Background Although dietary adjustments are recommended frequently for bowel symptoms, evidence o... more Background Although dietary adjustments are recommended frequently for bowel symptoms, evidence of diet's impact on bowel function is lacking. The aim was to develop a patient-reported outcome instrument, for children with and without Hirschsprung's disease (HD), to explore experiences of dietary effects on bowel function. Methods Children with and without HD and their parents participated. Questionnaire items regarding the impact of diet on bowel function originated from focus group discussions. Specific food items, reported in the literature or in focus groups to cause bowel functional effects, were listed requesting each item's effect size and effect type. Content validity was tested within two separate semistructured interviews. A pilot test was performed. Assessing comprehension, relevance and wording clarity structurally, revisions were made accordingly. Children's bowel function was assessed through the validated Rintala Bowel Function Score. Results A total of 13 children with and without HD, median age 7 (range 2-15) years, and 18 parents participated in the validation. Each question's relevance had been ranked highly early in the validation process but most questions needed refining for improving clarity and comprehension. Wordings regarding bowel symptoms and emotions connected to food in particular were perceived to be sensitive and complex. Specifically wording regarding some bowel symptoms (gases, pain) and parental stress emotions (guilt, ambivalence) were, consistent with participants' opinions, subjected to multiple step revisions. Following the validation process, which included two semistructure interviews with different participants and then a pilot test with a third cohort, a full track overview of changes and rewording made in all steps of the validation process was presented. The final questionnaire then comprised 13 questions assessing foods' significance for bowel function, emotions, social impact and 90 specific food items' possible effects and effect sizes on bowel function. Conclusions The Diet and Bowel Function questionnaire, enabling answering by children, was developed and the content validated qualitatively. This report presents insights into the whole validation process, declaring reasons for the selected question-and answering options, and their wordings. The Diet and Bowel Function questionnaire can be used as a survey questionnaire to enhance understanding of dietary effects on bowel function in children, and its results can be supportive in improving dietary-treatment programs.

Research Square (Research Square), May 9, 2023

Background: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbi... more Background: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health di culties. No previous study has investigated their experiences of schooling, despite the importance of schools in children's development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden. Method: Twenty-six children with LGEA aged 3-17 were recruited nationwide in Sweden. One parent completed a survey on their child's school-based supports (according to de nitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Di culties Questionnaire) and current symptomatology. School data were compared to that from 95 children with EA who had primary anastomosis (PA), a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal≥90 percentile. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Signi cance level was p<0.05. Results: Seventeen children with LGEA (65.4%) had formal school-based support concerning nutritional intake (60%), educational needs (50%) and medical/special health needs (35%), which was signi cantly more frequent compared to children with PA overall (36.8%, p=0.013) and regarding nutritional intake support in school (20%, p< 0.001). In children with LGEA, school-based support was related to low birth weight (p=0.036), young child age (p=0.014), height ≤-2SD for age/sex (p=0.024) and an increased number of aerodigestive symptoms (p<0.05). All children with LGEA who had abnormal scores of mental health, except for one child, had school-based support. Nine children with LGEA (36%) had school absence ≥1times/month the past year, more frequently because of colds/airway infections (p=0.045) and gastro-intestinal related problems compared to PA (p=0.003). School functioning scores were not signi cantly different from children with PA (p=0.34) but correlated negatively with school-based support (<0.001) and school absence (p=0.002). One parent out of 26 reported their child's school satisfaction as "not good". Conclusions: Children with LGEA commonly receive school-based support, re ecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Collaborative strategies between specialized health care providers and schools are needed to accommodate for their disease-speci c needs in school. Future research focusing on academic achievement in children with EA is needed. Children with intellectual disability can attend special schools[26]. The Swedish Education Act[27] provides every child the right to have support to optimize their development and learning and achieve the knowledge requirements for each grade. There are two main categories of school-based support in the Swedish mainstream schools; "special" support and school-based accommodations. "Special" support is a part of the pupil's action plan, has longer duration, includes greater interventions in the school which are not possible to conduct by the ordinary teachers/school staff and its implementation needs a formal decision from the principal. School-based accommodations refers to a less intensive support, which is provided by ordinary teachers and school staff, without the need for a formal decision by the principal [28]. In the Swedish compulsory school, 5.8% of the pupils had an action plan as a part of special schoolbased support in year 2021/2022[29]. Children with LGEA Children were considered to have LGEA when primary anastomosis was not achievable at the rst operation because it was too far between esophageal segments and were recruited nationwide through collaboration with all four Swedish pediatric surgical centers, where the children were surgically treated and offered follow-up care. Inclusion criteria were child ages 2-18 years, respondents uent in written and spoken Swedish, written informed consent by children aged ≥ 15 and legal guardians of all children. Exclusion criteria was delayed reconstruction of EA only due to prematurity/low birth weight. Out of 38 families of children with LGEA, 30 families received written study information, consent form and the questionnaires for this study (see Fig. 1). Data was collected from mid-January to March in 2020, then was paused due to the Covid-19 pandemic. The last four replies were collected between February and April in 2021. Comparison group; children with Gross type C who underwent primary anastomosis Ninety-ve children with Gross EA type C who underwent primary anastomosis (PA) at Sahlgrenska University Hospital, Gothenburg and participated in an earlier studies of school support and school functioning (> 90% response rate) from 2017-2019 [19, 30, 31] served as an hypothesized milder affected comparison group for children with LGEA regarding available school data. Clinical data A researcher at each study center reviewed medical records for birth characteristics, anatomical subtype of EA, associated anomalies, surgical interventions, postoperative outcomes, including the latest anthropometric growth measurement with date for measurement, weight and height values, norm SD values for child age and sex. Information on the child's airway and digestive problems the past four weeks was collected through a parent-reported questionnaire.

Prevalence of mental health problems, associated factors, and health-related quality of life in children with long-gap esophageal atresia in Sweden

Journal of Pediatric Surgery, Dec 1, 2022

British Journal of Surgery, Jul 14, 2014

Background: Serial transverse enteroplasty (STEP) was first described in 2003 as a method for len... more Background: Serial transverse enteroplasty (STEP) was first described in 2003 as a method for lengthening and tapering of the bowel in short bowel syndrome. The aim of this multicentre study was to review the outcome of a Swedish cohort of children who underwent STEP. Methods: All children who had a STEP procedure at one of the four centres of paediatric surgery in Sweden between September 2005 and January 2013 were included in this observational cohort study. Demographic details, and data from the time of STEP and at follow-up were collected from the case records and analysed. Results: Twelve patients had a total of 16 STEP procedures; four children underwent a second STEP. The first STEP was performed at a median age of 5⋅8 (range 0⋅9-19⋅0) months. There was no death at a median follow-up of 37⋅2 (range 3⋅0-87⋅5) months and no child had small bowel transplantation. Seven of the 12 children were weaned from parenteral nutrition at a median of 19⋅5 (range 2⋅3-42⋅9) months after STEP. Conclusion: STEP is a useful procedure for selected patients with short bowel syndrome and seems to facilitate weaning from parenteral nutrition. At mid-term follow-up a majority of the children had achieved enteral autonomy. The study is limited by the small sample size and lack of a control group.

Self-reported effects of diet on gastrointestinal symptoms in healthy children

Journal of Pediatric Gastroenterology and Nutrition, Jul 5, 2023

Journal of Pediatric Surgery, Aug 1, 2019

This study was done to assess the functional and clinical results after one year of cemented THR ... more This study was done to assess the functional and clinical results after one year of cemented THR with dual mobility cup for the treatment of fracture neck femur in active middle-aged patients in Egypt (Middle Eastern population). Patients and methods: This study included 31 patients (32 hips) with displaced femoral neck fractures that were admitted to

Children

Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied ... more Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied by GI complaints. Despite the lack of evidence regarding whether diet affects GI symptoms, advice on dietary changes is common. The aim was to investigate self-reported dietary effects on GI symptoms, comparing children with HD with healthy children. This was an observational, cross-sectional, self-reported case-control study using the validated Diet and Bowel Function questionnaire. All children with HD aged 1–18 years were surgically treated during 2003–2021 at a national HD center, and their parents were invited to participate. Healthy children served as controls. The data were presented as median (range) and n (%). 71/85 children with HD (6 years (1–17); 76% boys) and 265/300 controls (9 years (1–18); 52% boys) participated. Dietary effects on GI symptoms were reported more frequently by children with HD than controls (55/71 [77%] vs. 137/265 [52%], p ≤ 0.001), as were dietary adjust...

Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

Journal of Pediatric Surgery

British Journal of Surgery, 2021

Background In a nationwide cohort the potentially protective association between allergy and comp... more Background In a nationwide cohort the potentially protective association between allergy and complicated appendicitis was analysed, and the influence of seasonal antigens, antihistamine treatment, and timing of allergy onset assessed. Methods Some 1 112 571 children born between 2000 and 2010 were followed from birth until the end of 2014. A cross-sectional analysis of appendicitis cases, with comparison of allergic versus non-allergic children for absolute risk and odds of complicated appendicitis was first undertaken. This was followed by a longitudinal analysis of children with allergy and matched controls who had never had an allergy, for incidence rate and hazard of subsequent complicated or simple appendicitis. Results Of all children, 20.4 per cent developed allergy and 0.6 per cent had appendicitis during follow-up. Among children with appendicitis, complicated appendicitis was more common among non-allergic children (18.9 per cent, 948 of 5016) than allergic children (12.8 ...

Journal of Pediatric Surgery, 2018

Aim Perineal hemangiomas rarely occur in patients with anorectal malformations (ARM), but they ca... more Aim Perineal hemangiomas rarely occur in patients with anorectal malformations (ARM), but they can pose a significant challenge and warrant special attention. Surgical incision of posterior sagittal anorectoplasty (PSARP) may involve the hemangioma site resulting in hemorrhage, damage to blood supply, leading to complications and adversely affect outcome. The aim of this study was to review the experience of the ARM-Net consortium in the management of perineal hemangioma associated with ARM and evaluate treatment strategies. Materials and Methods Data on all patients with ARM and a perineal hemangioma located in the planes of the PSARP dissection who were managed at participating ARM-Net centers were collected retrospectively by questionnaire, as follows: ARM type, hemangioma distribution and penetration, imaging findings, medical/surgical management, timing of definitive repair, complications and outcome. Results Ten patients from eight centers were included. Three patients each had a rectobulbar or rectovestibular fistula, 2 had a rectoperineal fistula, and one had a rectoprostatic fistula; in one patient, the hemangioma was too disfiguring to determine malformation type. Mean follow-up time was 36.6 months (median 29 months). Colostomies were performed before definitive repair in 8 patients. Five patients received systemic beta-blockers before PSARP: 3 were operated uneventfully following partial/complete involution of the hemangioma, and 2 are awaiting surgery. The two patients with rectoperineal fistula were managed expectantly. The remaining 3 patients underwent surgery with no preoperative medical treatment, and all had complications: mislocated neoanus in three and complete perineal dehiscence in one. Conclusion Attempting PSARP in the presence of a perineal hemangioma may lead to complications and adversely affect outcome. This study confirms the benefits of beta blocker treatment before surgical reconstruction.

Perineal Groove: An Anorectal Malformation Network, Consortium Study

The Journal of Pediatrics, 2020

OBJECTIVE To review the Anorectal Malformation Network experience with perineal groove (PG) focus... more OBJECTIVE To review the Anorectal Malformation Network experience with perineal groove (PG) focusing on its clinical characteristics and management. STUDY DESIGN Data on patients with PG managed at 10 participating Anorectal Malformation Network centers in 1999-2019 were collected retrospectively by questionnaire. RESULTS The cohort included 66 patients (65 females) of median age 1.4 months at diagnosis. The leading referral diagnosis was anal fissure (n = 20 [30.3%]): 23 patients (34.8%) had anorectal malformations. Expectant management was practiced in 47 patients (71.2%). Eight (17%) were eventually operated for local complications. The median time to surgery was 14 months (range, 3.0-48.6 months), and the median age at surgery was 18.3 months (range, 4.8-58.0 months). In the 35 patients available for follow-up of the remaining 39 managed expectantly, 23 (65.7%) showed complete or near-complete self-epithelization by a mean age 15.3 months (range, 1-72 months) and 4 (11.4%) showed partial self-epithelization by a mean age 21 months (range, 3-48 months). Eight patients showed no resolution (5 were followed for ≤3 months). Nineteen patients (28.7%) were primarily treated with surgery. In total, 27 patients were operated. Dehiscence occurred in 3 of 27 operated patients (11.1%). CONCLUSIONS PG seems to be an underestimated anomaly, frequently associated with anorectal malformations. Most cases heal spontaneously; therefore, expectant management is recommended. When associated with anorectal malformations requiring reconstruction, PG should be excised in conjunction with the anorectoplasty.