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BMI&#41; in the year of transition&#46; IBM SPSS v21&#46;0<span class="elsevierStyleSup">&#174;</span> and Microsoft Excel 2013<span class="elsevierStyleSup">&#174;</span> were used for the descriptive analysis&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">From a total of 87 patients followed at the SCCF during the study period&#44; 25 had reached adult age&#44; of which 19 were transferred to adult Pulmonology&#46; The main reasons for delay in transfer to adult care were either clinical instability or personal reasons &#40;e&#46;g&#46; waiting for placement in University in another city&#41;&#46; Nine &#40;47&#37;&#41; patients were male&#44; median age at diagnosis was 2&#46;8 years &#91;minimum 34 days&#59; maximum 14 years&#93; and 9 were homozygous for F508del mutation&#46; Most patients &#40;79&#37;&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>15&#41; presented exocrine pancreatic insufficiency&#44; 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&#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">Concerning nutritional status&#44; three patients &#40;16&#37;&#41; had a BMI<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>18<span class="elsevierStyleHsp" style=""></span>kg&#47;m<span class="elsevierStyleSup">2</span>&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">As for airway bacterial colonization&#44; the most common microorganisms isolated during the year of transition were <span class="elsevierStyleItalic">Staphylococcus aureus</span> &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#41; and <span class="elsevierStyleItalic">Pseudomonas aeruginosa</span> &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>11&#41; &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#44; which were responsible for chronic colonization in 57&#46;9&#37; and 31&#46;6&#37; of patients&#44; respectively&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0040" class="elsevierStylePara elsevierViewall">In terms of treatment&#44; 13 &#40;68&#37;&#41; patients had inhaled antibiotics&#44; 16 &#40;84&#37;&#41; dornase alfa and 16 &#40;84&#37;&#41; pancreatic enzymes&#46; No patients were on home oxygen therapy&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall">With improvements in healthcare in the last decades&#44; nowadays 85&#37; of chronic paediatric patients reach adulthood&#44;<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">3</span></a> highlighting the importance of continued care and transition programmes to adult Medicine&#46; Understanding the clinical condition in which patients reach adulthood is of utmost importance&#44; as an audit of paediatric clinical care and for future comparison of outcomes&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">In CF patients&#44; not only has life expectancy increased&#44; but nutritional status and quality of life have also improved&#44; which are known to correlate to better respiratory function&#46;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">6</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall">To our knowledge&#44; this is the first study published in Portugal to describe this reality&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">We hope these results can be used for future comparison and evaluation of outcome improvements in CF patients&#44; namely the ones who were lately diagnosed through the neonatal screening programme&#44; most of which began follow-up and treatment even before onset of symptoms&#46; We hypothesize that they will have better nutritional status and pulmonary function at transition to adult care&#44; as has been previously reported&#46;<a class="elsevierStyleCrossRefs" href="#bib0050"><span class="elsevierStyleSup">4&#8211;6</span></a></p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Conflicts of interest</span><p id="par0065" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare&#46;</p></span></span>"
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                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>3272-26A-G&#47;3007delG&nbsp;\t\t\t\t\t\t\n
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Research letter
Cystic fibrosis – How we reach adult life
Fibrose Quistica – Como chegamos à idade adulta
I. Serrasa,
Corresponding author
inesserrasped@gmail.com

Corresponding author.
, J.A. Oliveirab, L. Pereirab,c, C. Barretob,c
a Serviço de Pediatria, Centro Hospitalar Universitário do Algarve, Unidade de Portimão, Estrada do Poço Seco, 8500-338 Portimão, Portugal
b Departamento de Pediatria, Hospital de Santa Maria (CHLN), Centro Académico de Medicina de Lisboa, Av. Prof. Egas Moniz, 1649-035 Lisboa, Portugal
c Centro Especializado de Fibrose Quística, Hospital de Santa Maria (CHLN), Centro Académico de Medicina de Lisboa, Av. Prof. Egas Moniz, 1649-035 Lisboa, Portugal
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          "en" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Bacterial colonization in the year of transition to adult care &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>19&#41;&#46;</p>"
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Until recently&#44; cystic fibrosis &#40;CF&#41; was considered a paediatric disease&#44; and transition of patients to adult care was rarely performed due to low life expectancy and reduced experience from adult Medicine in the follow-up of this disease&#46; Nowadays&#44; due to significant improvement of CF survival rates&#44; almost all of these patients reach adulthood&#46;<a class="elsevierStyleCrossRefs" href="#bib0035"><span class="elsevierStyleSup">1&#44;2</span></a> The transference of teenagers with a chronic disease like CF to adult care is a very stressful phase&#44; sometimes faced with some anxiety by both parents and patients&#46; Therefore&#44; a transition period is fundamental for both&#44; with the aim of promoting the patient&#39;s autonomy and acceptance of new roles&#44; but also giving continuity of care&#46; In the Specialized Centre of Cystic Fibrosis &#40;SCCF&#41; of the Hospital Santa Maria &#40;Lisbon&#41;&#44; this transition happens over three appointments&#44; where both paediatric and adult physicians are present&#46; Since the implementation of this programme in 2000&#44; 54 young adults have been transferred to adult care&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">The aim of this study was to characterize the clinical status of CF patients during the year of transition to adult care in a 7-year period&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">We conducted a retrospective&#44; descriptive study of all patients transferred to adult care between January 2010 and December 2016&#46; Clinical records were reviewed and the following data were obtained&#58; sex&#44; age at diagnosis&#44; genotype&#44; treatment performed&#44; complications&#44; airway bacterial colonization&#44; lung function &#40;forced expiratory volume in 1s &#40;FEV<span class="elsevierStyleInf">1</span>&#41;&#41; and nutritional status &#40;body mass index &#8211; BMI&#41; in the year of transition&#46; IBM SPSS v21&#46;0<span class="elsevierStyleSup">&#174;</span> and Microsoft Excel 2013<span class="elsevierStyleSup">&#174;</span> were used for the descriptive analysis&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">From a total of 87 patients followed at the SCCF during the study period&#44; 25 had reached adult age&#44; of which 19 were transferred to adult Pulmonology&#46; The main reasons for delay in transfer to adult care were either clinical instability or personal reasons &#40;e&#46;g&#46; waiting for placement in University in another city&#41;&#46; Nine &#40;47&#37;&#41; patients were male&#44; median age at diagnosis was 2&#46;8 years &#91;minimum 34 days&#59; maximum 14 years&#93; and 9 were homozygous for F508del mutation&#46; Most patients &#40;79&#37;&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>15&#41; presented exocrine pancreatic insufficiency&#44; six &#40;32&#37;&#41; had liver disease&#44; two &#40;11&#37;&#41; CF-related diabetes and four &#40;21&#37;&#41; had only pulmonary manifestations &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46; All patients were transferred to adult care up to the age of 21 years&#44; the majority &#40;63&#37;&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#41; at 18 years&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0025" class="elsevierStylePara elsevierViewall">Regarding pulmonary function&#44; six &#40;32&#37;&#41; patients presented FEV<span class="elsevierStyleInf">1</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>70&#37;&#44; of which only 1 had severe obstruction &#40;FEV<span class="elsevierStyleInf">1</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>40&#37;&#41; &#40;<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">Concerning nutritional status&#44; three patients &#40;16&#37;&#41; had a BMI<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>18<span class="elsevierStyleHsp" style=""></span>kg&#47;m<span class="elsevierStyleSup">2</span>&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">As for airway bacterial colonization&#44; the most common microorganisms isolated during the year of transition were <span class="elsevierStyleItalic">Staphylococcus aureus</span> &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#41; and <span class="elsevierStyleItalic">Pseudomonas aeruginosa</span> &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>11&#41; &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#44; which were responsible for chronic colonization in 57&#46;9&#37; and 31&#46;6&#37; of patients&#44; respectively&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0040" class="elsevierStylePara elsevierViewall">In terms of treatment&#44; 13 &#40;68&#37;&#41; patients had inhaled antibiotics&#44; 16 &#40;84&#37;&#41; dornase alfa and 16 &#40;84&#37;&#41; pancreatic enzymes&#46; No patients were on home oxygen therapy&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall">With improvements in healthcare in the last decades&#44; nowadays 85&#37; of chronic paediatric patients reach adulthood&#44;<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">3</span></a> highlighting the importance of continued care and transition programmes to adult Medicine&#46; Understanding the clinical condition in which patients reach adulthood is of utmost importance&#44; as an audit of paediatric clinical care and for future comparison of outcomes&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">In CF patients&#44; not only has life expectancy increased&#44; but nutritional status and quality of life have also improved&#44; which are known to correlate to better respiratory function&#46;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">6</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall">To our knowledge&#44; this is the first study published in Portugal to describe this reality&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">We hope these results can be used for future comparison and evaluation of outcome improvements in CF patients&#44; namely the ones who were lately diagnosed through the neonatal screening programme&#44; most of which began follow-up and treatment even before onset of symptoms&#46; We hypothesize that they will have better nutritional status and pulmonary function at transition to adult care&#44; as has been previously reported&#46;<a class="elsevierStyleCrossRefs" href="#bib0050"><span class="elsevierStyleSup">4&#8211;6</span></a></p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Conflicts of interest</span><p id="par0065" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare&#46;</p></span></span>"
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Article information
ISSN: 25310437
Original language: English
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