Abstract:
INTRODUCTION:Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider attitudes and preferences regarding ACP discussions and tools. MATERIALS AND METHODS:Patients ≤22 years with advanced CF (FEV1 ≤40% predicted, >2 pulmonary exacerbations requiring IV antibiotics in 1 year, and/or use of home oxygen or non-invasive ventilation) were referred to the pediatric palliative care team (PC). After establishing rapport, ACP was discussed using Voicing My CHOiCES™: An Advanced Care Planning Guide (VMC). Patients completed a survey assessing attitudes and preferences around ACP. PC also led a training session for CF providers around ACP and VMC and provider attitudes were assessed via a pre- and post-training survey. RESULTS:Twelve patients (mean age 17.9 ± 2.2 years) reviewed VMC and completed the ACP survey. The majority (83%) found ACP helpful. None felt it was harmful. All found VMC easy to understand and 90% felt it was appropriate for patients with CF. Of participating CF providers (pre-training, n = 6; post-training, n = 7), 83% found ACP worthwhile, but desired more training in this area. All found the training session useful and felt VMC was appropriate for patients with CF. DISCUSSION:Adolescents with advanced CF disease felt ACP was a positive experience and not harmful. CF providers valued ACP, but desired more training. Both patients and providers felt that VMC was a useful, disease-appropriate tool. Pediatr Pulmonol. 2016;51:1304-1310. © 2016 Wiley Periodicals, Inc.
journal_name
Pediatr Pulmonoljournal_title
Pediatric pulmonologyauthors
Kazmerski TM,Weiner DJ,Matisko J,Schachner D,Lerch W,May C,Maurer SHdoi
10.1002/ppul.23559subject
Has Abstractpub_date
2016-12-01 00:00:00pages
1304-1310issue
12eissn
8755-6863issn
1099-0496journal_volume
51pub_type
杂志文章abstract:BACKGROUND:Patients with bronchopulmonary dysplasia (BPD) may require tracheostomy for long-term mechanical ventilation. Polysomnography (PSG) may predict successful decannulation in children, however it is unclear how this success compares with children without a PSG. To better evaluate this role, we compared decannul...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24474
更新日期:2019-11-01 00:00:00
abstract:INTRODUCTION:In this cohort study spanning an 18-year period, we evaluated the prevalence and associated mortality rate of epidemic strains of pseudomonas aeruginosa (PsA), especially Australian Epidemic Strain Type 1 (AES1), in a pediatric cystic fibrosis center practicing cohort segregation and early PsA eradication....
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24173
更新日期:2018-11-01 00:00:00
abstract:BACKGROUND:Magnetic Resonance Imaging (MRI) techniques to image the larynx have evolved rapidly into a promising and safe imaging modality, without need for sedation or ionizing radiation. MRI is therefore of great interest to image pediatric laryngeal diseases. Our aim was to review MRI developments relevant for the p...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24250
更新日期:2019-04-01 00:00:00
abstract::A variety of postnatal therapies have been and will be evaluated for prevention or treatment of neonatal chronic lung disease (CLD). A simple method for early selection of the highest risk infants would optimize intervention trials. Our study compared a clinical scoring system for predicting neonatal CLD (defined at 3...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/(sici)1099-0496(199906)27:6<388::aid-ppul5
更新日期:1999-06-01 00:00:00
abstract::Spontaneous hemopneumothorax (SHP) is a rare potentially life-threatening condition that occurs in predominantly young adolescents. The resultant massive hemorrhage leading to hypovolemic shock can be a surgical emergency. It constitutes 1-12% of all spontaneous pneumothoraces and presents with two cardinal features, ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.22712
更新日期:2014-01-01 00:00:00
abstract::Respiratory syncytial virus (RSV) lower respiratory tract infection (LRTI) during early childhood may be associated with subsequent pulmonary sequelae, including recurrent wheezing and asthma. We undertook a systematic review to investigate the pulmonary function sequelae following RSV LRTI in the first 3 years of lif...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24804
更新日期:2020-07-01 00:00:00
abstract:BACKGROUND:There are limited data on the effect of bronchopulmonary dysplasia (BPD) on sleep disordered breathing (SDB). We hypothesized that both the severity of prematurity and BPD would increase the likelihood of SDB in early childhood. Our secondary aim was to evaluate the association of demographic factors on the ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.23769
更新日期:2017-12-01 00:00:00
abstract::Even though childhood asthma is assumed to comprise reversible airway obstruction, some children develop irreversible airway obstruction (not reversed by a bronchodilator or corticosteroids); this may be due to inflammation that has caused remodeling. Lately, it has been claimed that in the absence of treatment with i...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.10090
更新日期:2002-04-01 00:00:00
abstract::Diffuse panbronchiolitis is a progressive fatal respiratory disease of unknown cause seen predominantly in Southeast Asian adults. We report this condition in a 10-year-old child of Korean birth because of the uncommon presentation at this age and the favorable outcome associated with early diagnosis. Our objective wa...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.23176
更新日期:2015-09-01 00:00:00
abstract::We have evaluated the role of eosinophil cationic protein (ECP) concentrations in serum in predicting wheezing after bronchiolitis, during infancy and early childhood. A prospective study at a university hospital serving all pediatric patients in a defined area was designed. Serum ECP concentrations were measured in 9...
journal_title:Pediatric pulmonology
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1002/(sici)1099-0496(199706)23:6<397::aid-ppul1
更新日期:1997-06-01 00:00:00
abstract::The aim of this study was to compare safety and efficacy of bambuterol hydrochloride (10 mg) oral solution administered once daily in the evening with terbutaline sulphate (0.075 mg/kg body weight) oral solution administered three times daily in 2-5-year-old children with asthma. There were two treatment groups: (2/3)...
journal_title:Pediatric pulmonology
pub_type: 临床试验,杂志文章,多中心研究,随机对照试验
doi:10.1002/(sici)1099-0496(200003)29:3<194::aid-ppul7
更新日期:2000-03-01 00:00:00
abstract::In order to better understand the regulation of lung maturation by glucocorticoid-glucocorticoid receptor signaling, we studied glucocorticoid receptor (GR) hypomorphic mice with a mixed C57Bl6/129 sv background, in which disruption of exon 2 of the GR gene produces an N-terminal truncated GR protein. Four groups of m...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.20746
更新日期:2008-02-01 00:00:00
abstract:OBJECTIVE:To develop and validate a questionnaire to assess asthma control in children (CAN). DESIGN:Two versions of the CAN (for carers and children) were developed. Both versions were validated in an observational, prospective, multicenter study performed in 38 hospital outpatient clinics throughout Spain. Four hund...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.20929
更新日期:2009-01-01 00:00:00
abstract:RATIONALE:Whether asthma constitutes a risk factor for coronavirus disease-2019 (COVID-19) is unclear. Here, we aimed to assess whether asthma, the most common chronic disease in children, is associated with higher COVID-19 risk or severity in pediatric populations. METHODS:We performed a systematic literature search ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,meta分析
doi:10.1002/ppul.24909
更新日期:2020-09-01 00:00:00
abstract::One hundred fifty-four children with recurrent or chronic infections of the lower respiratory tract compatible with the diagnosis of primary ciliary dyskinesia (PCD) were evaluated for the presence of ultrastructural ciliary abnormalities. Studies were performed on multiple samples of respiratory mucosa obtained by na...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.1950100104
更新日期:1991-01-01 00:00:00
abstract:OBJECTIVE:There is currently no evidence-based method for defining competency in pediatric flexible bronchoscopy (FB). Based on expert opinion, guidelines using numbers of procedures have been published in defining competency for pediatric FB. The purpose of this study was to formally survey the opinion of USA pediatri...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.22872
更新日期:2014-06-01 00:00:00
abstract::During the final prenatal period of fetal lung development in humans, important maturational processes occur, including the production of surfactant necessary to decrease surface tension at the air-liquid interface of the alveoli. During early gestation, the glucocorticoid receptor is expressed in the fetal lung, and ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,评审
doi:10.1002/ppul.1092
更新日期:2001-07-01 00:00:00
abstract:OBJECTIVES:A pilot study to compare pulmonary mechanics in a neonatal intensive care unit (NICU) cohort, specifically, comparing lung elastance between male and female infants in the NICU. HYPOTHESIS:Anecdotally, male infants are harder to ventilate than females. We hypothesize that males have higher model-based elast...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24538
更新日期:2020-01-01 00:00:00
abstract::Recurrent respiratory symptoms are common in preterm infants in the first 2 years of life. The aim of this study was to determine the lung function abnormalities associated with such symptoms. Forty preterm infants, with a median gestational age of 29 weeks were studied at a median postnatal age of 12 months. Twenty-t...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.1950110304
更新日期:1991-01-01 00:00:00
abstract::Malacoplakia is an unusual inflammatory condition with distinctive histologic features. Involvement of the lung is quite uncommon and is rarely described in paediatrics. We report on a case of pulmonary malacoplakia in a teenage girl. ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.10386
更新日期:2003-11-01 00:00:00
abstract::Respiration rate is an important indicator of a person's health, and thus it is monitored when performing clinical evaluations. There are different approaches for respiration monitoring, but generally they can be classed as contact or noncontact. For contact methods, the sensing device (or part of the instrument conta...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,评审
doi:10.1002/ppul.21416
更新日期:2011-06-01 00:00:00
abstract:OBJECTIVES:We assessed the performance of a tracheostomy decannulation protocol privileging safety over quickness, in pediatric patients undergoing rehabilitation from severe acquired brain injury. We analyzed factors associated with decannulation timing and possibility and examined cases of failure. HYPOTHESIS:A safe...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.23832
更新日期:2017-11-01 00:00:00
abstract:OBJECTIVES:We evaluated safety and efficacy of recombinant human growth hormone (rhGH) for improving growth, lean body mass (LBM), pulmonary function, and exercise tolerance in children with cystic fibrosis (CF) and growth restriction. STUDY DESIGN:Multicenter, open-label, controlled clinical trial comparing outcomes ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1002/ppul.21546
更新日期:2012-03-01 00:00:00
abstract::Although airway obstruction and chronic endobronchial infection have long been recognized as major factors in the pathogenesis of lung disease in cystic fibrosis (CF), only recently has it been recognized that the inflammatory process itself may be responsible in a major way for destroying the lungs. The most characte...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/(sici)1099-0496(199708)24:2<137::aid-ppul1
更新日期:1997-08-01 00:00:00
abstract::Pulmonary surfactant, a unique developmentally regulated, phospholipid-rich lipoprotein, is synthesized by the type II epithelial cells (AECII) of the pulmonary alveolus, where it is stored in organelles termed lamellar bodies. The synthesis of pulmonary surfactant is under multifactorial control and is regulated by a...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.22975
更新日期:2014-09-01 00:00:00
abstract:BACKGROUND/OBJECTIVE:Our objective was to obtain follow-up pulmonary function testing and assessment of clinical respiratory outcomes, at 1-2 years, in preterm infants whose mothers were randomized to a single rescue course of antenatal steroids (AS) versus placebo. METHODS:Follow-up of a randomized, double-blinded tr...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,随机对照试验
doi:10.1002/ppul.23711
更新日期:2017-09-01 00:00:00
abstract:BACKGROUND:The pH of exhaled breath condensate (EBC) of adolescent athletes engaged in vigorous physical activity is low compared to healthy controls; however, the ionic determinants of EBC pH and the acute effects of exercise on those determinants have not been definitively established. OBJECTIVES:This study had two ...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.21055
更新日期:2009-08-01 00:00:00
abstract::Wheezing is the most widely reported adventitious lung sound in the English language. It is recognized by health professionals as well as by lay people, although often with a different meaning. Wheezing is an indicator of airway obstruction and therefore of interest particularly for the assessment of young children an...
journal_title:Pediatric pulmonology
pub_type: 杂志文章,评审
doi:10.1002/ppul.23930
更新日期:2018-02-01 00:00:00
abstract:OBJECTIVES:To develop reference equations of maximal voluntary ventilation (MVV) in children and adolescents, and to test the validity and reproducibility of MVV. STUDY DESIGN:Cross-sectional study. PATIENT-SUBJECT SELECTION:A total of 348 healthy volunteers (6-17 years)-248 for the development of reference equations...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.24576
更新日期:2020-02-01 00:00:00
abstract::We report on a 1-month-old boy who presented with a "horseshoe" lung, complete "O" rings of the trachea, and an unusual course of the left pulmonary artery mimicking a left pulmonary artery sling. Computed tomography, cardiac catheterization, and bronchoscopy were performed to confirm the rare coexistence of these ano...
journal_title:Pediatric pulmonology
pub_type: 杂志文章
doi:10.1002/ppul.10172
更新日期:2002-11-01 00:00:00