Children hospitalised with bronchiolitis in the first year of life have a lower quality of life nine months later

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

Diseases of the Esophagus ◽

10.1093/dote/doz047.22 ◽

2019 ◽

Vol 32 (Supplement_1) ◽

Author(s):

A Pham ◽

E Dugelay ◽

A Bonnard ◽

T Gelas ◽

V Rousseau ◽

...

Keyword(s):

Quality Of Life ◽

Esophageal Atresia ◽

Anastomotic Stricture ◽

Primary Anastomosis ◽

Feeding Disorders ◽

First Year ◽

Aversive Events ◽

French Study ◽

First Year Of Life

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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