DOZ047.22: FEED-EASY: feeding disorders in children with esophageal atresia study

Abstract Introduction With advances in surgical and neonatal care, survival of patients with esophageal atresia (EA) has improved over time. While a number of conditions associated with EA may have an impact on feeding development (delayed primary anastomosis, anastomotic leaks, recurrent tracheoesophageal fistula, anastomotic stricture, gastroesophageal reflux, esophageal dysmotility, etc.) and although children with EA experience a number of oral aversive events in their first year of life, feeding disorders (FD) are poorly described and frequently unrecognized. The primary aim of this study was to describe FD in children born with EA, with a standardized scale. The secondary aim was to describe conditions associated with FD. Methods FEED-EASY is a multicentric French study. Parents of children born with EA between 2013 and 2016 in one of the 22 participating centers were asked to participate and received the French version of the standardized and reproductive ‘Montreal Children's Hospital Feeding Scale (MCH-FS)’. Results One hundred and forty-five children were included; 61 (42%) had FD according to the MCH-FS. These children were characterized by disinterest in food, oral hypersensitivity, difficulty in touching some textures and food avoidance, with an influence in quality of life. Nineteen (13%) were tube-fed between 1 and 4 years of age. Birth weight and chronic respiratory difficulties were associated with FD in children with EA. Anastomotic stricture (present in 31% of the included children) was not associated with FD. Conclusions FD is frequent and unrecognized in children with EA, and can influence growth and quality of life. MCH-FS allows pediatricians to identify FD in children with EA within a couple of minutes.

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Valuing Health Status in the First Year of Life: The Infant Health-Related Quality of Life Instrument

Value in Health ◽

10.1016/j.jval.2018.12.009 ◽

2019 ◽

Vol 22 (6) ◽

pp. 721-727 ◽

Cited By ~ 1

Author(s):

Ruslan Jabrayilov ◽

Karin M. Vermeulen ◽

Patrick Detzel ◽

Livia Dainelli ◽

Antoinette D.I. van Asselt ◽

...

Keyword(s):

Quality Of Life ◽

Health Status ◽

Infant Health ◽

First Year ◽

Health Related Quality ◽

Life Instrument ◽

Related Quality ◽

Health Related ◽

First Year Of Life

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Asthma-like symptoms in the first year of life and health-related quality of life at age 12 months: the Generation R study

Quality of Life Research ◽

10.1007/s11136-011-9957-9 ◽

2011 ◽

Vol 21 (3) ◽

pp. 545-554 ◽

Cited By ~ 7

Author(s):

Ashna D. Mohangoo ◽

Harry J. de Koning ◽

Johan C. de Jongste ◽

Jeanne M. Landgraf ◽

Johannes C. van der Wouden ◽

...

Keyword(s):

Quality Of Life ◽

First Year ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

First Year Of Life

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Outcome of esophageal atresia in Germany

Diseases of the Esophagus ◽

10.1093/dote/doaa093 ◽

2020 ◽

Author(s):

A Schmedding ◽

B Wittekindt ◽

R Schloesser ◽

M Hutter ◽

U Rolle

Keyword(s):

Mortality Rate ◽

Esophageal Atresia ◽

First Year ◽

Insurance Company ◽

Associated Anomalies ◽

Clinical Registry ◽

Major Health ◽

First Year Of Life ◽

Overall Mortality

Abstract The aim of this study was to evaluate the outcome of esophageal atresia in Germany in a retrospective observational study of a large cohort. Data from the major health insurance company in Germany, which covers approximately 30% of German patients, were analyzed. All patients born and registered between 2009 and 2013 with a diagnosis of esophageal atresia at first admission to the hospital were included. Mortality was analyzed during the first year of life. We identified 287 patients with esophageal atresia, including 253 with and 34 without tracheoesophageal fistula. Associated anomalies were found in 53.7% of the patients; the most frequent were cardiac anomalies (41.8%), anomalies of the urinary tract (17.4%), and atresia of the colon, rectum, and anus (9.4%). Forty-one patients (14.3%) had a birth weight <1500 g. Seventeen patients (5.9%) died before surgery. Gastrostomy was performed during the index admission in 70 patients (25.9%). The reconstruction of the esophageal passage was performed in 247 patients (93.9%). Forty-eight percent of the patients who underwent an operation required dilatation. The mortality rate in the patients who underwent an operation was 10.4%. These results from Germany correspond to the international results that have been reported. The number of dilatations was in the middle of the range of those reported in the literature; the overall mortality rate was in the upper portion of the range of the international rates. Efforts should be made to establish a clinical registry to measure and improve the quality of care for this and other rare conditions.

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Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

European Journal of Pediatric Surgery ◽

10.1055/s-0039-1693729 ◽

2019 ◽

Vol 30 (01) ◽

pp. 096-103 ◽

Cited By ~ 2

Author(s):

Michaela Dellenmark-Blom ◽

Julia Quitmann ◽

Jens Dingemann ◽

Stefanie Witt ◽

Benno M. Ure ◽

...

Keyword(s):

Quality Of Life ◽

Esophageal Atresia ◽

Primary Anastomosis ◽

Female Gender ◽

Parent Report ◽

Clinical Factors ◽

Child Report ◽

Factors Affecting ◽

Airway Infections

Abstract Introduction We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments. Materials and Methods A total of 124 Swedish and German families of EA children answered the validated EA-QOL questionnaires (response rate 68%), for evaluation of three HRQOL domains in children 2 to 7 years old (53 parents) and four HRQOL domains in children 8 to 17 years old (62 children/71 parents). Clinical data were collected through medical records and a questionnaire. Statistics included between—group analysis, univariable and stepwise multivariable regression analysis, p < 0.05. Results Between 2 to 7 years, no primary anastomosis (p = 0.022) and female gender (p = 0.026) predicted worse scores related to “physical health and treatment,” and gastrostomy insertion related to “eating” (p = 0.0001), and “social isolation and stress” (p = 0.001). Between 8 to 17 years, no primary anastomosis (child report), prematurity, esophageal dilatation (parent report) predicted poor HRQOL related to “eating” (p < 0.05), associated anomalies to “body perception” (p = 0.031, parent report), female gender (p = 0.018, child report) and severe EA (p = 0.011 child report, p = 0.004 parent report) to “social relationships,” and severe EA predicted worse “health and well-being” scores (p = 0.004, parent report). An increased number of digestive symptoms (difficulty swallowing food, heartburn, and vomiting), lowered all EA-QOL domain scores in both age groups (p < 0.001). An increased number of respiratory problems (cough, wheezing, airway infections. breathlessness, and chest tightness), lowered scores in two HRQOL domains among children 2 to 7 years (p < 0.05). Conclusion Impairments within condition-specific HRQOL domains in EA children are found in congenital and surgical subgroups, and notably related to digestive symptoms throughout childhood.

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Outcome in children with brain tumours diagnosed in the first year of life: long-term complications and quality of life

Archives of Disease in Childhood ◽

10.1136/adc.2007.116202 ◽

2008 ◽

Vol 93 (7) ◽

pp. 582-589 ◽

Cited By ~ 26

Author(s):

N U Gerber ◽

D Zehnder ◽

T J Zuzak ◽

A Poretti ◽

E Boltshauser ◽

...

Keyword(s):

Quality Of Life ◽

Brain Tumours ◽

First Year ◽

First Year Of Life

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Esophageal Interventions in Infants Born with Esophageal Atresia: A Comprehensive Analysis of a National Database

European Journal of Pediatric Surgery ◽

10.1055/s-0041-1739415 ◽

2021 ◽

Author(s):

Tatjana T. König ◽

Emilio Gianicolo ◽

Luisa Frankenbach ◽

Eva Wittenmeier ◽

Oliver J. Muensterer

Keyword(s):

Esophageal Atresia ◽

Primary Anastomosis ◽

Treatment Strategies ◽

Primary Treatment ◽

National Database ◽

First Year ◽

Rare Malformation ◽

Low Incidence ◽

First Year Of Life ◽

And Training

Abstract Introduction Esophageal atresia (EA) is a rare malformation that often requires a series of procedures, including surgical primary anastomosis, staged repair, and endoscopic procedures. Actual numbers and trends in interventions and variety in treatment strategies remain unclear. Materials and Methods Data from the German federal bureau of statistics containing all EA-related inpatient procedures encoded from 2005 until 2018 were analyzed for children during the first year of life. The sum of esophageal anastomoses and replacements was used to calculate an estimate of incidence of EA. Results Over 14 years, 12,627,888 inpatient cases were recorded in infants in Germany. The mean incidence of EA was 1 per 4,217 live births. On average, 163.3 (95% confidence interval [CI]: 150.8–176.1) esophageal anastomoses, 11.2 (95% CI: 8.7–13.7) esophageal lengthening procedures, and 6.7 (95% CI: 5.42–8.00) esophageal replacements were recorded annually. Overall, 187.8 (95% CI: 147.1–200.4) endoluminal treatments (ballon dilatation, bougienage, stent placement, or injection) were performed per 100 anastomoses. Over the years, bougienage was increasingly replaced by ballon dilatation as primary treatment. Boys had a significantly higher number of esophageal procedures than girls, but the incidence of endoscopic treatments in relation to anastomoses was the same for both genders. Conclusion The low incidence of EA in relation to a relatively large number of units treating those patients in Germany may pose challenges for maintaining competency and training of all specialists involved. The number of esophagoscopic treatments for esophageal stricture per anastomosis is lower than previously estimated.

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Long-term results of treatment of newborns and infants with necrosis and perforation of the stomach and duodenum

Russian Journal of Pediatric Surgery, Anesthesia and Intensive Care ◽

10.17816/psaic718 ◽

2021 ◽

Vol 11 (1) ◽

pp. 7-16

Author(s):

Anastasiia A. Skopetc ◽

Svetlana A. Karavaeva ◽

Tatiana K. Nemilova

Keyword(s):

Quality Of Life ◽

Nutritional Status ◽

Neurological Deficits ◽

Long Term Results ◽

First Year ◽

Health Profile ◽

Results Of Treatment ◽

First Year Of Life

INTRODUCTION: Necrosis and perforation of the stomach and /or duodenum in newborns and infants is a rare but severe disease with high mortality. There are many theories about the etiology and pathogenesis of the necrosis and perforation of the stomach and duodenum in children of this age. Various treatment options are described, but neither foreign nor Russian publications have assessed the long-term results of the treatment of patients with perforation of the stomach and duodenum during the first year of life and the quality of their life. AIM: This study aimed to analyze the results of treatment of newborns and infants with perforation of the stomach and duodenum and to assess their long-term quality of life. MATERIALS AND METHODS: The study analyzes the long-term results of treatment of 21 children, aged 212 yrs, with perforation of the stomach and duodenum. The volumetric evacuation function of the stomach and duodenum and the childs nutritional status were assessed. A survey of patients and their parents was also carried out to assess the quality of life of the child using questionnaires from the EuroQol Research Foundation version EQ5D-Y. RESULTS: The volumetric evacuation function of the stomach and duodenum recovered completely. The nutritional status of 16 (76%) children corresponds to their age. According to the results of the analysis of the questionnaire of the quality of life, eight patients aged 8 yrs and 15 parents consider the health profile of children as the best (71%), the parents of one patient assess the health profile of their child as satisfactory, and five mothers of children with neurological deficits rated as unsatisfactory. CONCLUSION: Owing to the high adaptation capacity of the newborn and infants of the first year of life, most of the examined patients have a good quality of life and a normal nutritional status. The volumetric evacuation function of the stomach and duodenum recovered in all patients within 13 yrs after surgery.

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Quality of Life and Events in the First Year of Life. Results from the Prospective Copenhagen Birth Cohort 1959?61

The Scientific World JOURNAL ◽

10.1100/tsw.2006.14 ◽

2006 ◽

Vol 6 ◽

pp. 106-115 ◽

Cited By ~ 2

Author(s):

Søren Ventegodt ◽

Trine Flensborg-Madsen ◽

Niels Jørgen Andersen ◽

Mohammed Morad ◽

Joav Merrick

Keyword(s):

Quality Of Life ◽

Birth Cohort ◽

Good Life ◽

Adult Child ◽

Psychomotor Development ◽

First Year ◽

Full Time ◽

In The Beginning ◽

First Year Of Life

The objective of this paper was to explore the association between diverse factors occurring during the first year of a child?s life and the quality of life later as an adult. The design was a prospective cohort study based on material from the Copenhagen Birth Cohort 1959–61 with 7,222 participants and two sets of questionnaires used: one by a physician during the child's first year and one by the ?adult child? 31–33 years later. The results showed that a mother's attitude towards her pregnancy, unsuccessful abortions, and/or institutionalization left a permanent trace on the child, since these children, as adults, have a quality of life 3% below the average. Meningitis during the first year of life resulted in a quality of life 11.7% below the average, while other illnesses or accidents did not have an effect. The largest associations were found with psychomotor development, where “walking with support” showed a difference of 14.2% in overall quality of life between the fastest and slowest group. Generally, diet is not correlated with quality of life, however, we find a small, but essential, correlation between the quality of life of the adult and the early cessation of suckling (4%). Full-time institutionalization during the first year of life showed a connection with the quality of life of the adult (7.1%). It is concluded that our quality of life, health and ability as adults are primarily determined by what we ourselves choose to do with our lives as young people and as adults - and only to a marginal degree determined by factors related to our background. This suggests that we as adults have a great freedom to achieve a good life despite our experiences in the beginning of life.

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Experiences of patients with Poland syndrome of diagnosis and care in Italy: a pilot survey

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-019-1253-8 ◽

2019 ◽

Vol 14 (1) ◽

Cited By ~ 3

Author(s):

Ilaria Baldelli ◽

Fabio Gallo ◽

Marco Crimi ◽

Piero Fregatti ◽

Lorenzo Mellini ◽

...

Keyword(s):

Quality Of Life ◽

Early Diagnosis ◽

Diagnostic Delay ◽

Research Network ◽

First Year ◽

Poland Syndrome ◽

Organizational Issues ◽

Perceived Quality Of Care ◽

First Year Of Life

Abstract Background Poland Syndrome (PS) is a rare congenital malformation involving functional and aesthetic impairments. Early diagnosis and timely therapeutic approaches play an important role in improving the quality of life of patients and kindred. This study aims to explore healthcare experiences of the diagnosis of patients affected by PS and to investigate the factors associated with diagnostic delay in Italy. Results Seventy-two patients affected by PS were asked to fill in a self- administered questionnaire on: a) diagnostic path; b) perceived quality of care received after diagnosis; c) knowledge of the rights and the socio-economic hardships related to their disease; d) evaluation of the integration of various professional skills involved in the diagnostic and therapeutic approach; e) perception of the social support provided by the Italian Association of Poland Syndrome (AISP). The average age at diagnosis was around 14 years; diagnosis was made at birth in only 31.58% of cases. Although typical symptomatology had appeared on average at an early age (4 months), only 23 patients (40.35%) received an early diagnosis (within the first year of life). Just over half of the patients (n = 30) were diagnosed in their region of origin, while 27 were diagnosed elsewhere. Furthermore, 12.28% were self-diagnoses. Among the patients who were diagnosed outside their region, 15 (88.24%) stated they had foregone some visits or treatments owing to costs and/or organizational issues. Conclusions An analysis of the patients’ experiences highlights several gaps and a lack of homogeneity in the diagnostic and therapeutic follow-up of PS patients in Italy. A specific national diagnostic and therapeutic path is essential to guarantee patients complete and appropriate health services, compliant with the ethical principles of non-discrimination, justice and empathy. Implementation of an effective information and research network and empowerment of patients’ associations are necessary conditions to encourage clinical collaboration and improve the quality of life of people living with rare diseases.

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