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1.
J Pediatr Gastroenterol Nutr ; 76(4): 434-439, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36727903

RESUMO

OBJECTIVES: Jejunoileal atresia is a common cause of neonatal intestinal obstruction. Results of long-term outcome are very limited. The aim of this study was to describe perioperative and postoperative outcome, and to evaluate long-term gastrointestinal quality of life (QoL) in patients treated for jejunoileal atresia. METHODS: We conducted a combined retrospective and cross-sectional observational study of patients treated for jejunoileal atresia during 2001-2019. Perioperative data were registered, and complications were classified according to the Clavien-Dindo classification. To evaluate long-term clinical status and QoL, the PedsQL Gastrointestinal Symptoms Scales questionnaire and a self-designed questionnaire were used. Approval from the Data Protection Office was obtained. RESULTS: Seventy patients were included in the retrospective part of the study. Of these, 70% got a primary anastomosis. Concomitant anomalies were registered in 46%. Median length of stay was 28 (5-140) days. Early (<28 days) complication rate was 66%. Early abdominal surgical reinterventions were performed in 11%, most frequently due to anastomotic leak. Late (>28 days) abdominal surgical reinterventions were performed in 21%, and most commonly for bowel obstruction. Overall mortality rate was 4%. Thirty-two patients with median 8 (2-19) years returned the questionnaires. Overall gastrointestinal QoL was good. However, concomitant gastrointestinal anomalies were associated with impaired outcome. Embarrassment of the scar was reported in 38%. Three (9%) patients used medication (laxatives, proton pump inhibitor) for gastrointestinal symptoms. CONCLUSIONS: Jejunoileal atresia is associated with significant morbidity during initial treatment. Despite this, the majority of the patients have excellent long-term outcomes.


Assuntos
Atresia Intestinal , Obstrução Intestinal , Humanos , Recém-Nascido , Qualidade de Vida , Estudos Retrospectivos , Estudos Transversais , Resultado do Tratamento , Atresia Intestinal/cirurgia
2.
Surg Endosc ; 37(1): 189-199, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35915187

RESUMO

BACKGROUND: Randomized controlled trials (RCT) comparing long-term outcome after laparoscopic (LF) and open fundoplication (OF) in children are lacking. Here we report recurrence rates and time to recurrence, frequency of re-interventions, use of antisecretory drugs, gastrointestinal symptoms, and patient/parental satisfaction a decade after children were randomized to LF or OF. METHODS: Cross-sectional long-term follow-up study of a two-center RCT that included patients during 2003-2009. Patients/parents were interviewed and medical charts reviewed for any events that might be related to the fundoplication. If suspicion of recurrence, further diagnostics were performed. Informed consent and ethical approval were obtained. CLINICALTRIALS: gov: NCT01551134. RESULTS: Eighty-eight children, 56 (64%) boys, were randomized (LF 44, OF 44) at median 4.4 [interquartile range (IQR) 2.0-8.9] years. 46 (52%) had neurological impairment. Three were lost to follow-up before first scheduled control. Recurrence was significantly more frequent after LF (24/43, 56%) than after OF (13/42, 31%, p = 0.004). Median time to recurrence was 1.0 [IQR 0.3-2.2] and 5.1 [IQR 1.5-9.3] years after LF and OF, respectively. Eight (19%) underwent redo fundoplication after LF and three (7%) after OF (p = 0.094). Seventy patients/parents were interviewed median 11.9 [IQR 9.9-12.8] years postoperatively. Among these, use of anti-secretory drugs was significantly decreased from preoperatively after both LF (94% vs. 35%, p < 0.001) and OF (97% vs. 19%, p < 0.001). Regurgitation/vomiting were observed in 6% after LF and 3% after OF (p = 0.609), and heartburn in 14% after LF and 17% after OF (p = 1.000). Overall opinion of the surgical scars was good in both groups (LF: 95%, OF: 86%, p = 0.610). Patient/parental satisfaction with outcome was high, independent of surgical approach (LF: 81%, OF: 88%, p = 0.500). CONCLUSIONS: The recurrence rate was higher and recurrence occurred earlier after LF than after OF. Patient/parental satisfaction with outcome after both LF and OF was equally high.


Assuntos
Refluxo Gastroesofágico , Laparoscopia , Masculino , Humanos , Criança , Feminino , Fundoplicatura/métodos , Refluxo Gastroesofágico/cirurgia , Refluxo Gastroesofágico/diagnóstico , Resultado do Tratamento , Azia/cirurgia , Laparoscopia/efeitos adversos , Laparoscopia/métodos , Vômito , Seguimentos , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Ann Surg ; 275(3): e575-e585, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-32649454

RESUMO

OBJECTIVE: To create the first structured surgical report form for NBL with international consensus, to permit standardized documentation of all NBL-related surgical procedures and their outcomes. SUMMARY OF BACKGROUND DATA: NBL, the most common extracranial solid malignant tumor in children, covers a wide spectrum of tumors with significant differences in anatomical localization, organ or vessel involvement, and tumor biology. Complete surgical resection of the primary tumor is an important part of NBL treatment, but maybe hazardous, prone to complications and its role in high-risk disease remains debated. Various surgical guidelines exist within the protocols of the different cooperative groups, although there is no standardized operative report form to document the surgical treatment of NBL. METHODS: After analyzing the treatment protocols of the SIOP Europe International Neuroblastoma Study Group, Children's Oncology Group, and Gesellschaft fuer Paediatrische Onkologie und Haematologie - German Association of Pediatric Oncology and Haematology pediatric cooperative groups, important variables were defined to completely describe surgical biopsy and resection of NBL and their outcomes. All variables were discussed within the Surgical Committees of SIOP Europe International Neuroblastoma Study Group, Children's Oncology Group, and Gesellschaft fuer Paediatrische Onkologie und Haematologie - German Association of Pediatric Oncology and Haematology. Thereafter, joint meetings were organized to obtain intercontinental consensus. RESULTS: The "International Neuroblastoma Surgical Report Form" provides a structured reporting tool for all NBL surgery, in every anatomical region, documenting all Image Defined Risk Factors and structures involved, with obligatory reporting of intraoperative and 30 day-postoperative complications. CONCLUSION: The International Neuroblastoma Surgical Report Form is the first universal form for the structured and uniform reporting of NBL-related surgical procedures and their outcomes, aiming to facilitate the postoperative communication, treatment planning and analysis of surgical treatment of NBL.


Assuntos
Formulários como Assunto , Neuroblastoma/cirurgia , Projetos de Pesquisa/normas , Oncologia Cirúrgica/normas , Criança , Humanos , Cooperação Internacional
4.
Pediatr Surg Int ; 38(3): 479-484, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34910223

RESUMO

PURPOSE: We aimed to evaluate possible positive and negative effects of postoperative use of transanastomotic feeding tube (TAFT) in neonates operated for congenital duodenal obstruction (CDO). METHODS: This is a retrospective study reviewing medical records of neonates operated for CDO during 2003-2020 and comparing postoperative feeding outcomes and complications in patients with and without TAFT. Approval from the hospital's data protection officer was obtained. RESULTS: One hundred patients, 59% girls, were included, and 37% received TAFT. Mean birth weight and gestational age were 2628 (675.1) grams and 36.6 (2.4) weeks, respectively. Furthermore, 45% had no other malformations, and 36% had Down syndrome. Patient demographics were similar for TAFT and not-TAFT patients, except that not-TAFT neonates weighed median 335 g less (p = 0.013). The TAFT group got parenteral nutrition 2 days shorter (p < 0.001) and started enteral feeds 1.5 days earlier (p < 0.001) than the not-TAFT group. Fewer neonates with TAFT got a central venous catheter [65 vs 89%, (p = 0.008)]. In the TAFT group, 67% were breast fed at discharge compared to 49% in the not-TAFT group (p = 0.096). CONCLUSION: Neonates with TAFT had earlier first enteral feed, fewer days with parenteral nutrition and fewer placements of central venous catheters.


Assuntos
Obstrução Duodenal , Obstrução Duodenal/cirurgia , Nutrição Enteral , Feminino , Humanos , Recém-Nascido , Intubação Gastrointestinal , Masculino , Nutrição Parenteral , Estudos Retrospectivos
5.
HPB (Oxford) ; 22(1): 161-168, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31371244

RESUMO

BACKGROUND: Incidence and long-term outcomes of choledochal malformations (CMs) in children remain unclear. METHODS: Clinical characteristics, operative details, complications, and follow-up data were collected from eight pediatric surgical centers in Sweden, Norway, Denmark, and Finland, which also answered a questionnaire addressing management practices. RESULTS: During 2000-2017, 126 pediatric CMs were diagnosed, corresponding an incidence of 1:37,400. Diagnostic, treatment, and follow-up practices varied markedly. Of patients with complete clinical data (n = 119), 85% and 11% had type I and IV CMs and were managed by open hepaticojejunostomy at median age of 2.5 (interquartile range 0.46-5.8) years. Associated malformations were more common in fusiform and type IV (23%) than cystic CMs (8%, p = 0.043). Pancreaticobiliary maljunction was more frequently confirmed in patients presenting with pancreatitis (26% vs. 7%, p = 0.005) and with fusiform CMs (56% vs. 25%, p = 0.001). Cholangitis/pancreatitis episodes, occurring in 12% during postoperative follow-up of 4.0 (2.0-7.9) years, associated with longer surveillance (OR 1.32, 95% CI 1.13-1.54, p < 0.001). However, only two thirds of centers continued follow-up until adulthood. No malignancies were reported. CONCLUSIONS: CM incidence was higher than traditionally reported among Western populations. Although open hepaticojejunostomy carries good short-term outcomes, long-term morbidity is noteworthy. Standardized evidence-based management strategies and long-term follow-up are encouraged.


Assuntos
Sistema Biliar/anormalidades , Anormalidades do Sistema Digestório/diagnóstico , Anormalidades do Sistema Digestório/cirurgia , Fatores Etários , Pré-Escolar , Colangiografia , Colangiopancreatografia por Ressonância Magnética , Anormalidades do Sistema Digestório/epidemiologia , Feminino , Humanos , Incidência , Lactente , Jejunostomia , Masculino , Padrões de Prática Médica , Estudos Retrospectivos , Países Escandinavos e Nórdicos/epidemiologia
6.
J Pediatr Gastroenterol Nutr ; 68(6): 818-823, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31124989

RESUMO

OBJECTIVES: Parents of children with a chronic illness are at risk for impaired psychosocial functioning. Gastroesophageal reflux disease (GERD) is such a disease, and no studies have investigated effects of antireflux surgery on parental psychological distress. The aims of this study were to assess psychological distress and state and trait anxiety in mothers of children with GERD, and to explore possible changes after antireflux surgery. METHODS: Mothers of children referred for antireflux surgery were included in this prospective study. Standardized questionnaires were used to evaluate psychological distress and state and trait anxiety before and 12 months after antireflux surgery. RESULTS: Of 87 eligible mothers of children with GERD, 62 (71%) agreed to participate. All children had objectively verified GERD by 24-hour pH-monitoring and/or upper gastrointestinal contrast study and unsatisfactory symptom relief of pharmacological treatment. Thirty-one (50%) mothers returned questionnaires postoperatively. Preoperatively, mothers of children undergoing antireflux surgery reported high levels of psychological distress and state anxiety, and 54% had scores indicating clinically significant psychological distress. None of the preoperative child characteristics were found to significantly influence maternal psychological distress or state anxiety. Twelve months postoperatively, both psychological distress and state anxiety were reduced. CONCLUSIONS: Mothers of children undergoing antireflux surgery reported reduced levels of psychological distress and state anxiety 12 months after the operation.


Assuntos
Ansiedade/epidemiologia , Fundoplicatura/psicologia , Refluxo Gastroesofágico/psicologia , Laparoscopia/psicologia , Mães/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adolescente , Adulto , Ansiedade/etiologia , Criança , Pré-Escolar , Feminino , Fundoplicatura/métodos , Refluxo Gastroesofágico/cirurgia , Humanos , Lactente , Laparoscopia/métodos , Masculino , Período Pós-Operatório , Período Pré-Operatório , Estudos Prospectivos , Escalas de Graduação Psiquiátrica , Angústia Psicológica , Inquéritos e Questionários
8.
Scand J Gastroenterol ; 53(4): 471-474, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29546790

RESUMO

OBJECTIVES: The importance of case load for treatment of extrahepatic biliary atresia (BA) is debated. The aim of this study was to register results of BA treatment in a small volume centre. METHODS: Retrospective chart review study of patients with BA treated from 2000 to 2017. The institutional review board approved the study. RESULTS: Forty-five babies were identified of which 42 (93%) are alive. Forty-one patients had a Kasai portoenterostomy (PE), two had a hepaticojejunostomy and two had a primary liver transplantation. The age at PE/hepaticojejunostomy was median 63 (4-145 days). Seven surgeons performed the operations, and the median duration of the diagnostic work-up was 8 (3-24) days. Clearance of jaundice was achieved in 23/43 (53%) babies, and 3- and 5-year native liver survival was 47% and 40%, respectively. Clearance of jaundice post-PE/hepaticojejunostomy was a strong predictor of native liver survival (adjusted OR: 0.027; 95%; p = .009). Plasma level of conjugated bilirubin at time of referral was also a significant predictor of native liver survival (adjusted OR: 1.053; p = .017). CONCLUSION: A small volume centre may achieve satisfactory results for BA patients. The study has, however, identified factors that may further improve results; earlier referral, optimizing diagnostic work-up and establishing one dedicated surgical team.


Assuntos
Atresia Biliar/mortalidade , Atresia Biliar/cirurgia , Bilirrubina/sangue , Portoenterostomia Hepática/efeitos adversos , Feminino , Hospitais com Baixo Volume de Atendimentos , Humanos , Lactente , Recém-Nascido , Icterícia/etiologia , Transplante de Fígado/efeitos adversos , Masculino , Noruega/epidemiologia , Estudos Retrospectivos , Resultado do Tratamento
10.
Scand J Gastroenterol ; 51(5): 625-32, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26679498

RESUMO

OBJECTIVES: The aims of this study were to describe the population of paediatric patients undergoing gastrostomy placement at a Norwegian tertiary referral centre and to investigate trends over time in patient characteristics and operative technique. MATERIALS AND METHODS: Patients <15 years of age getting a primary gastrostomy from 1994 to 2012 were included in this retrospective observational study. Patient data were collected from medical records and the National Registry. RESULTS: Six-hundred forty-nine patients with a median age of 1.2 years [gestational week 30-14.9 years] were included. Neurological disorders (ND) was the most common underlying group of diagnosis (n = 311, 48%), followed by cardiac disease 104 (16%), congenital anomalies 85 (13%), respiratory disease 43 (7%), malignancy 29 (5%), and others 77 (12%). At follow-up, 162 (25%) patients were dead. A percutaneous endoscopic technique (PEG) was used in 401 (62%) patients, open surgery (OPEN) in 201 (31%) and laparoscopy (LAP) in 47 (7%). The number of gastrostomies per year more than doubled during the period (p < 0.001). More patients with cardiac disease and congenital anomalies were given a gastrostomy during the last years (all p < 0.05), whereas the number of patients with ND remained stable. Furthermore, there has been a decrease in median age and an increase in the number of PEG and LAP (p < 0.05). CONCLUSION: The number of gastrostomy insertions has increased from 1994 to 2012. NDs is the most common underlying diagnosis in patients receiving a gastrostomy, PEG is the most common technique and patient characteristics have changed during the study period.


Assuntos
Nutrição Enteral/métodos , Gastrostomia/tendências , Centros de Atenção Terciária/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Endoscopia Gastrointestinal , Nutrição Enteral/estatística & dados numéricos , Feminino , Humanos , Lactente , Masculino , Estudos Retrospectivos , Fatores de Tempo
11.
Ann Surg ; 261(6): 1061-7, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26291953

RESUMO

OBJECTIVE: The aim was to compare recurrence of gastroesophageal reflux disease (GERD) in children randomized to laparoscopic (LF) or open Nissen fundoplication (OF). BACKGROUND: LF is considered superior to OF by most pediatric surgeons even though this has not been shown in any randomized controlled trial in children. METHODS: Patients referred for fundoplication between 2003 and 2009 were eligible for inclusion in this 2-center, unstratified, randomized, parallel-group study conducted in Norway. The main outcome measure was recurrence of GERD, which was defined as GERD combined with a reflux index greater than 4 on pH monitoring and/or gastroesophageal reflux and/or herniated wrap on upper gastrointestinal (UGI) contrast study. Only experienced laparoscopic surgeons performed the LF. Postoperative follow-up included 24-hour pH monitoring, UGI contrast study, and a clinical examination at 6 months and phone interviews after 1, 2, and 4 years. RESULTS: Eighty-seven children were included and randomized to either LF (n = 44) or OF (n = 43). Median age was 4.7 years (0.2-15.4) in the LF group and 3.7 years (0.2-14.2) in the OF group. Twenty-three patients in both groups were neurologically impaired. Median follow-up time was 4.0 years (0.3-8.9). Significantly more patients undergoing LF (37%) experienced recurrence of GERD compared to those undergoing OF (7%); risk ratio for recurrence in the LF group was 5.2 (95% confidence interval: 1.6-16.6) (P = 0.001). CONCLUSIONS: Children operated with LF have a higher recurrence rate of GERD than those operated with OF.


Assuntos
Fundoplicatura/métodos , Refluxo Gastroesofágico/cirurgia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Laparoscopia , Masculino , Recidiva
13.
Pediatr Surg Int ; 30(1): 11-7, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24240577

RESUMO

PURPOSE: It is assumed that laparoscopic surgery generally induces less inflammatory responses than open surgery. Since few studies have compared immune responses after laparoscopic and open surgery in children, we examined inflammatory markers in children randomized to open (ONF) or laparoscopic Nissen fundoplication (LNF). METHODS: Blood samples were collected prior to surgery (D0), and on postoperative day 1 (D1) and day 2 (D2). Inflammatory markers were measured using a multiplex antibody bead kit. The postoperative levels of inflammatory markers were statistically analyzed using a linear mixed model. A P value <0.05 was considered statistically significant. RESULTS: Twenty-nine patients randomized to ONF or LNF were included. Median age was 3.1 years (range 1.0-14.2) in the ONF group and 4.0 years (range 0.2-14.2) in the LNF group. Plasma levels of the anti-inflammatory cytokine interleukin (IL)-10 were significantly higher in the ONF group than in the LNF group postoperatively (P = 0.04). However, there were no significant differences between the groups in the levels of pro-inflammatory markers tumor necrosis factor-α, IL-6, IL-8, monocyte chemoattractant protein-1, white blood cell count, or C-reactive protein. CONCLUSIONS: We did not find that laparoscopy induced a substantially less inflammatory response than laparotomy in children undergoing fundoplication.


Assuntos
Fundoplicatura/métodos , Inflamação/sangue , Laparoscopia/métodos , Adolescente , Proteína C-Reativa , Quimiocina CCL2/sangue , Criança , Pré-Escolar , Feminino , Seguimentos , Fundo Gástrico/cirurgia , Humanos , Lactente , Interleucina-6/sangue , Interleucina-8/sangue , Contagem de Leucócitos/estatística & dados numéricos , Masculino , Resultado do Tratamento , Fator de Necrose Tumoral alfa/sangue
14.
J Pediatr Surg ; 59(6): 1037-1043, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38369401

RESUMO

BACKGROUND: Studies of mental health in adolescents with Hirschsprung disease (HD) are scarce. This cross-sectional study investigates mental health, psychosocial functioning and quality of life in HD adolescents. METHODS: Adolescents (12-18 years) treated at the Department of pediatric surgery at Oslo University Hospital were invited for participation. Mental health was assessed by interview; Child Assessment Schedule (CAS) and questionnaires; parental Child Behavior Checklist (CBCL) and adolescent Youth Self-Report (YSR). Psychosocial functioning was rated by Child Global Assessment Scale (cGAS). Adolescent Quality of Life was assessed by Pediatric Quality of Life inventory (PedsQL) and chronic family difficulties (CFD) by interview. Medical records were reviewed for somatic history. RESULTS: Thirty-seven adolescents, 28 males, median age 14.3 years, participated. By CAS interview, 8 of 37 (44% of females and 14% of males) fulfilled criteria for psychiatric diagnosis all within emotional and related disorders. Twenty-seven percent had CBCL internalizing scores and 16% had YSR internalizing scores in clinical range indicating emotional problems. By interviewer rated cGAS, 27% were scored in clinical range. By PedsQL 16% reported reduced psychosocial health score. Increased CFD, lower psychosocial functioning and reduced QoL as well as less paternal education were significantly associated with psychiatric diagnosis. Twice as many (4/8) adolescents who either had a stoma or bowel management had a psychiatric diagnosis compared to those who had neither stoma nor bowel management (7/28). CONCLUSION: Nearly one in four adolescents with HD fulfilled criteria for psychiatric diagnosis. Mental health problems were associated with reduced psychosocial function and reduced QoL. LEVEL OF EVIDENCE: III.


Assuntos
Doença de Hirschsprung , Qualidade de Vida , Humanos , Doença de Hirschsprung/psicologia , Doença de Hirschsprung/cirurgia , Masculino , Feminino , Adolescente , Estudos Transversais , Criança , Saúde Mental , Funcionamento Psicossocial , Transtornos Mentais/psicologia , Transtornos Mentais/epidemiologia , Transtornos Mentais/etiologia
15.
J Pediatr Surg ; 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38604831

RESUMO

BACKGROUND: Push-PEG (percutaneous endoscopic gastrostomy) with T-fastener fixation (PEG-T) allows one-step insertion of a balloon tube or button, and avoids contamination of the stoma by oral bacteria. However, PEG-T is a technically more demanding procedure with a significant learning curve. The aim of the present study was to compare outcomes after PEG-T and pull-PEG in a setting where both procedures were well established. MATERIALS AND METHODS: The study is a prospective cohort study including all patients between 0 and 18 year undergoing PEG-T and pull-PEG between 2017 and 2020 at a combined local and tertiary referral center. Complications and parent reported outcomes were recorded during hospital stay, after 14 days and 3 months postoperatively. RESULTS: 82 (93%) of eligible PEG-T and 37 (86%) pull-PEG patients were included. The groups were not significantly different with regard to age or weight. Malignant disorders and heart conditions were more frequent in the pull-PEG group, whilst neurodevelopmental disorders were more frequent in the PEG-T group (p < 0.001). 54% in both groups had a complication within 2 weeks. Late complications (between 2 weeks and 3 months postoperatively) occurred in 63% PEG-T vs 62% pull-PEG patients (p = 0.896). More parents in the pull-PEG group (49%) reported that the gastrostomy tube restricted their child's activity, compared to PEG-T (24%) (p = 0.01). At 3 months follow-up, more pull-PEG patients (43%) reported discomfort from the gastrostomy compared to PEG-T (21%) (p = 0.03). CONCLUSION: Overall complication rates were approximately similar, but pull-PEG was associated with more discomfort and restriction of activity. LEVELS OF EVIDENCE: Treatment study level II.

16.
J Pediatr Surg ; 2024 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-38763854

RESUMO

BACKGROUND: Hirschsprung disease is a congenital intestinal motility disorder characterized by an absence of enteric ganglion cells. Total colonic aganglionosis and near total or total intestinal aganglionosis, defined as absence of ganglion cells in the entire colon and with variable length of small bowel involved, are life-threatening conditions which affect less than 10 % of all patients with Hirschsprung disease. The aim of this project was to develop clinical consensus statements within ERNICA, the European Reference Network for rare congenital digestive diseases, on four major topics: Surgical treatment of total colonic aganglionosis, surgical treatment of total intestinal aganglionosis, management of poor bowel function in total colonic and/or intestinal aganglionosis and long-term management in total colonic and or intestinal aganglionosis. METHODS: A multidisciplinary panel of representatives from ERNICA centers was invited to participate. Literature was searched, using specified search terms, in Medline (ALL), Embase and Google Scholar. Abstracts were screened and full text publications were selected. The panel was divided in four groups that extracted data from the full text publications and suggested draft statements for each of the major topics. A modified Delphi process was used to refine and agree on the statements. RESULTS: The consensus statement was conducted by a multidisciplinary panel of 24 participants from 10 European countries, 45 statements reached consensus after 3 Delphi-rounds. The availability of high-quality clinical evidence was limited, and most statements were based on expert opinion. Another 25 statements did not reach consensus. CONCLUSIONS: Total colonic and total intestinal aganglionosis are rare variants of Hirschsprung disease, with very limited availability of high-quality clinical evidence. This consensus statement provides statements on the surgical treatment, management of poor bowel function and long-term management for these rare patients. The expert panel agreed that patients benefit from multidisciplinary and personalized care, preferably in an expert center. TYPE OF STUDY: Clinical consensus statement. LEVEL OF EVIDENCE: 3a.

17.
J Pediatr Surg ; 58(3): 564-567, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35940937

RESUMO

BACKGROUND: Post-cholecystectomy syndrome (PCS) refers to persistent or new abdominal symptoms after cholecystectomy. As there are very few reports on PCS in pediatric patients, we aimed to examine whether it was a frequent finding and which symptoms the affected children experienced. METHOD: This is a retrospective cross sectional study of pediatric patients, who underwent cholecystectomy during 2003-2019 at Oslo University Hospital. The PedsQL™ gastrointestinal symptoms scale questionnaire and a self-designed questionnaire exploring satisfaction after surgery and current medical conditions were mailed to all eligible patients. Patient/parental consent and approval from the local data protection officer (19/09054) were obtained. RESULTS: Questionnaires were sent to 82 patients of whom 44 (54%) answered. There were no significant demographic differences between the responders and the non responders. We identified 16 (36.7%) patients to have PCS. The most common symptoms were diarrhea (25%), bloating (16%), and heartburn/reflux (16%). Overweight was more common in patients with PCS (31%) than in patients without PCS (4%) (p = 0.014). Altogether 34/44 (77.3%) patients were satisfied with the result of the cholecystectomy; 92,6% of patients without PCS and 56.6% of those with PCS (p = 0.012). CONCLUSION: PCS is not uncommon in pediatric patients, and they report a wide range of gastrointestinal symptoms. We identified overweight as a potential risk factor for developing PCS. Nonetheless, most patients got total relief of abdominal pain and were satisfied with outcome after cholecystectomy. LEVEL OF EVIDENCE: Level 3.


Assuntos
Gastroenteropatias , Síndrome Pós-Colecistectomia , Humanos , Criança , Síndrome Pós-Colecistectomia/complicações , Estudos Retrospectivos , Estudos Transversais , Sobrepeso/complicações , Dor Abdominal/etiologia , Gastroenteropatias/etiologia
18.
J Pediatr Surg ; 58(12): 2332-2336, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37455172

RESUMO

INTRODUCTION: Adults with Hirschsprung disease (HD) and anorectal malformations (ARM) may experience persisting and new somatic and psychosocial problems. Patient education programs (PEPs) may improve self-management in patients with chronic illnesses. The aim of this study was to explore HD and ARM adults' experiences with and evaluation of a group-based PEP. We also looked at factors that might influence the attendance rate. METHOD: Non-intellectually impaired HD and ARM adults were invited to attend a diagnosis specific PEP at a pelvic floor interdisciplinary center. Eight health care professionals lectured. Aspects of the PEP were graded anonymously in a patient reported experience measure (PREM). Ethical approval was obtained. RESULTS: 17% (21/125) of invited adults (10HD, 11ARM) attended four PEPs. 19/21 (90%) PREMs were returned. Participants found meeting peers and sharing experiences especially valuable in addition to improved disease knowledge. Lectures by the pediatric and colorectal surgeons, stoma nurse, and sexologist were rated highest by the participants. The majority reported that the PEP would be helpful in managing everyday life. All participants recommended PEP in adolescence. Factors such as gender and travel distance did not affect attendance rate, but participants were older than non-participants, median 37 versus 24 years (p = 0.01). CONCLUSION: Attendance rates were low among HD and ARM adults invited to a PEP, but participants were overall highly satisfied. Peer support, mutual learning, and increased disease knowledge were seen as invaluable assets of the PEP. A web-based PEP was discouraged, while physical PEPs for both adults and adolescents were encouraged. LEVEL OF EVIDENCE: III.


Assuntos
Malformações Anorretais , Doença de Hirschsprung , Autogestão , Adolescente , Humanos , Adulto , Criança , Malformações Anorretais/psicologia , Doença de Hirschsprung/cirurgia , Educação de Pacientes como Assunto , Exame Físico , Qualidade de Vida/psicologia
19.
J Pediatr Surg ; 58(3): 490-495, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36283850

RESUMO

BACKGROUND: Effects of colorectal resection on sexual function and the lower urinary tract are inadequately studied in patients with Hirschsprung disease (HD). This study aimed to increase existing knowledge on sexual function and lower urinary tract symptoms (LUTS) in HD male adolescents operated with minimally invasive endorectal pull-through (ERPT). METHODS: Non-syndromic male adolescents (12-18 years) operated with ERPT were invited to participate in this single-center cross-sectional study which included a semi-structured interview on sexual function and LUTS, a questionnaire recording LUTS, and a urodynamic study. Uroflowmetry curves were eligible for evaluation if the voided volume was >50% of expected bladder capacity. Ethical approval and informed consent were obtained. RESULTS: Of 37 eligible male adolescents, 35 (95%) with a median age of 14.9 (12.0 -18.3) years were included. 94% had rectosigmoid aganglionosis, and 97% underwent a minimally invasive ERPT. 34 (97%) visited the outpatient clinic. The ability to get erections and to ejaculate was assessed in 25/35 (71%) adolescents. 25/25 (100%) could get an erection, and of adolescents ≥15 years 14/15 (93%) could ejaculate. 32 (91%) returned the questionnaire and underwent urodynamic studies. 15/32 (47%) reported LUTS, but most had only sporadic LUTS. 31/32 (97%) were highly satisfied with their bladder function. Sporadic urinary incontinence was reported by 4/32 (13%), but none reported social problems due to this. Of the eligible 28/32 (88%) uroflowmetry curves, 15/28 (54%) were normal. CONCLUSIONS: Minimally invasive ERPT seems to preserve sexual function and does not induce lower urinary tract symptoms in adolescent HD males. LEVEL OF EVIDENCE: III.


Assuntos
Doença de Hirschsprung , Sintomas do Trato Urinário Inferior , Incontinência Urinária , Humanos , Masculino , Adolescente , Doença de Hirschsprung/cirurgia , Estudos Transversais , Sintomas do Trato Urinário Inferior/etiologia , Sintomas do Trato Urinário Inferior/cirurgia , Micção
20.
J Pediatr Surg ; 58(10): 1929-1934, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37246043

RESUMO

AIMS AND OBJECTIVES: To explore nurses' experiences with anal dilatations in babies with anorectal malformations. BACKGROUND: Most babies with anorectal malformations require repeated anal dilatations, either before and/or after reconstructive surgery. Anal dilatation is usually performed without sedation or pain medication. Nurses participate in anal dilatations by assisting doctors doing anal dilatation, doing anal dilatation themselves, and instructing parents how to do anal dilatations. No previous studies have explored how nurses experience being involved in anal dilatations. DESIGN: Qualitative study design utilizing focus group interviews. The COREQ guidelines were applied. METHODS: Nurses with either ≤2 or ≥10 years' working experience participated in two different focus group interviews. The focus group interviews were transcribed and analyzed with content analysis. RESULTS: Twelve nurses, two males, participated. Three main themes emerged from the focus group interviews. The first main theme, "Anal dilatation causes distress", describes the nurses' worries about causing physical and/or psychological harm when doing anal dilatations. The second main theme, "Need for guidelines and training", contains nurses' recommendations for more theoretical training in addition to written guidelines on anal dilatations. The third main theme, "Collegial support is vital", describes nurses' needs and strategies for coping with difficult situations related to anal dilatations. CONCLUSIONS: Anal dilatation causes distress in nurses, and collegial support is essential for coping. Guidelines and systematic training are recommended to improve current practice. LEVEL OF EVIDENCE: VI.


Assuntos
Malformações Anorretais , Enfermeiras e Enfermeiros , Masculino , Lactente , Humanos , Malformações Anorretais/cirurgia , Grupos Focais , Dilatação , Pesquisa Qualitativa
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