Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices.

Abstract:

OBJECTIVES:More than 500,000 adolescents with special health care needs age into adulthood each year in the United States, and there is growing recognition of the need for support of their transition to adult-oriented health care. Because of improved survival, cystic fibrosis has experienced this increasing transition need, and cystic fibrosis policy leaders responded by mandating the transition of adults with cystic fibrosis to adult-focused cystic fibrosis care programs by 2000. The primary objective of this study was to characterize in detail recent transition practices at US cystic fibrosis programs, to identify areas for improvement and to serve as a model for other diseases. A secondary objective of this study was to develop and validate a survey for formal assessment of transition practices. METHODS:A 105-question survey on key aspects of transition was administered to cystic fibrosis care team members from all 195 US Cystic Fibrosis Care programs. Rates of adherence to recommended components of transition care were measured. RESULTS:A total of 448 surveys were obtained from 170 (87%) of 195 cystic fibrosis programs. Although transfer of care occurs at a median age of 19 years, initial discussion of transition does not occur until a median age of 17 years, limiting time to foster self-care skills. Only half of programs consistently perform a transition readiness assessment, 28% of centers offer visits focused on transition, and <10% have a written list of desirable self-management skills. CONCLUSIONS:There is significant variability in transition support provided to young adults with cystic fibrosis, but there are simple steps that may lead to more consistent delivery of transition services. Methods of assessment and lessons learned from transitioning young adults at US cystic fibrosis programs may serve to improve transition for individuals with other childhood diseases.

journal_name

Pediatrics

journal_title

Pediatrics

authors

McLaughlin SE,Diener-West M,Indurkhya A,Rubin H,Heckmann R,Boyle MP

doi

10.1542/peds.2007-2217

subject

Has Abstract

pub_date

2008-05-01 00:00:00

pages

e1160-6

issue

5

eissn

0031-4005

issn

1098-4275

pii

121/5/e1160

journal_volume

121

pub_type

杂志文章
  • Estimating the probability of neonatal early-onset infection on the basis of maternal risk factors.

    abstract:OBJECTIVE:To develop a quantitative model to estimate the probability of neonatal early-onset bacterial infection on the basis of maternal intrapartum risk factors. METHODS:This was a nested case-control study of infants born at ≥34 weeks' gestation at 14 California and Massachusetts hospitals from 1993 to 2007. Case-...

    journal_title:Pediatrics

    pub_type: 杂志文章,多中心研究

    doi:10.1542/peds.2010-3464

    authors: Puopolo KM,Draper D,Wi S,Newman TB,Zupancic J,Lieberman E,Smith M,Escobar GJ

    更新日期:2011-11-01 00:00:00

  • Inequality of access to surgical specialty health care: why children with government-funded insurance have less access than those with private insurance in Southern California.

    abstract:OBJECTIVE:More than 25 million children in the United States are dependent on federal and state medical insurance programs for their health care needs. In California, 3.25 million children depend on Medi-Cal for their health insurance. In Southern California alone, the figure is as high as 1.81 million. However, 9.30 m...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2004-0210

    authors: Wang EC,Choe MC,Meara JG,Koempel JA

    更新日期:2004-11-01 00:00:00

  • Hyperbilirubinemia in low birth weight infants and outcome at 5 years of age.

    abstract::The collaborative national survey on morbidity and mortality in preterm and small for gestational age infants in the Netherlands enrolled initially 1338 infants born in 1983. The relationship between maximal serum total bilirubin concentration in the neonatal period and neurodevelopmental outcome in the survivors of t...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:

    authors: van de Bor M,Ens-Dokkum M,Schreuder AM,Veen S,Brand R,Verloove-Vanhorick SP

    更新日期:1992-03-01 00:00:00

  • The Vaccine Safety Datalink: a model for monitoring immunization safety.

    abstract::The Vaccine Safety Datalink (VSD) project is a collaborative project between the Centers for Disease Control and Prevention and 8 managed care organizations (MCOs) in the United States. Established in 1990 to conduct postmarketing evaluations of vaccine safety, the project has created an infrastructure that allows for...

    journal_title:Pediatrics

    pub_type: 杂志文章,评审

    doi:10.1542/peds.2010-1722H

    authors: Baggs J,Gee J,Lewis E,Fowler G,Benson P,Lieu T,Naleway A,Klein NP,Baxter R,Belongia E,Glanz J,Hambidge SJ,Jacobsen SJ,Jackson L,Nordin J,Weintraub E

    更新日期:2011-05-01 00:00:00

  • Detention of Immigrant Children.

    abstract::Immigrant children seeking safe haven in the United States, whether arriving unaccompanied or in family units, face a complicated evaluation and legal process from the point of arrival through permanent resettlement in communities. The conditions in which children are detained and the support services that are availab...

    journal_title:Pediatrics

    pub_type: 历史文章,杂志文章

    doi:10.1542/peds.2017-0483

    authors: Linton JM,Griffin M,Shapiro AJ,COUNCIL ON COMMUNITY PEDIATRICS.

    更新日期:2017-05-01 00:00:00

  • Preschool vision screening in pediatric practice: a study from the Pediatric Research in Office Settings (PROS) Network. American Academy of Pediatrics.

    abstract::In this cross-sectional study, the vision-screening process is described for 8417 children aged 3 to 5 seen for health supervision in a group of 102 pediatric practices in 23 states and Puerto Rico. Three hundred forty children who failed screening (63% of those who failed) were followed up 2 months after initial scre...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:

    authors: Wasserman RC,Croft CA,Brotherton SE

    更新日期:1992-05-01 00:00:00

  • Tocopherol efficacy and safety for preventing retinopathy of prematurity: a randomized, controlled, double-masked trial.

    abstract::To test the efficacy and safety of vitamin E in preventing retinopathy of prematurity, 287 infants with birth weights of less than 1.5 kg or gestational ages of less than 33 weeks were enrolled within 24 hours of birth in a randomized, double-masked trial of IV, followed by oral, placebo v tocopherol (adjusted to plas...

    journal_title:Pediatrics

    pub_type: 临床试验,杂志文章,随机对照试验

    doi:

    authors: Phelps DL,Rosenbaum AL,Isenberg SJ,Leake RD,Dorey FJ

    更新日期:1987-04-01 00:00:00

  • Abnormal central complex is a marker of severity in the presence of partial ciliary defect.

    abstract:BACKGROUND:Ciliary ultrastructural defects with total lack of dynein arms (DA) cause abnormal mucociliary function leading to the chronic infections observed in primary ciliary dyskinesia. The role of partial ciliary ultrastructural defects, especially those involving the central complex, and their relationship with re...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.108.5.e86

    authors: Tamalet A,Clement A,Roudot-Thoraval F,Desmarquest P,Roger G,Boulé M,Millepied MC,Baculard TA,Escudier E

    更新日期:2001-11-01 00:00:00

  • Accuracy and precision of low-dose insulin administration.

    abstract:OBJECTIVE:To determine the lowest dose of concentrated (U100) insulin that can be reproducibly delivered. METHODS:A telephone survey was used to determine current practices in major pediatric hospitals regarding the administration of low doses of concentrated insulin. A sensitive gravitometric technique was used to de...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:

    authors: Casella SJ,Mongilio MK,Plotnick LP,Hesterberg MP,Long CA

    更新日期:1993-06-01 00:00:00

  • Echocardiographic characteristics of premature infants with patient ductus arteriosus.

    abstract::As part of a multicenter collaborative study, M-mode echocardiograms were obtained shortly after birth on 3,559 premature infants with birth weight less than or equal to 1,750 g. Of these infants, 1,496 did not develop a cardiac murmur or other signs of a "hemodynamically significant" patent ductus arteriosus (PDA). E...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:

    authors: Johnson GL,Breart GL,Gewitz MH,Brenner JI,Lang P,Dooley KJ,Ellison RC

    更新日期:1983-12-01 00:00:00

  • Sexual and Reproductive Health Care Services in the Pediatric Setting.

    abstract::Pediatricians are an important source of health care for adolescents and young adults and can play a significant role in addressing their patients' sexual and reproductive health needs, including preventing unintended pregnancies and sexually transmitted infections (STIs), including HIV, and promoting healthy relation...

    journal_title:Pediatrics

    pub_type: 杂志文章,评审

    doi:10.1542/peds.2017-2858

    authors: Marcell AV,Burstein GR,COMMITTEE ON ADOLESCENCE.

    更新日期:2017-11-01 00:00:00

  • Late-onset sepsis in very low birth weight neonates: the experience of the NICHD Neonatal Research Network.

    abstract:OBJECTIVE:Late-onset sepsis (occurring after 3 days of age) is an important problem in very low birth weight (VLBW) infants. To determine the current incidence of late-onset sepsis, risk factors for disease, and the impact of late-onset sepsis on subsequent hospital course, we evaluated a cohort of 6956 VLBW (401-1500 ...

    journal_title:Pediatrics

    pub_type: 杂志文章,多中心研究

    doi:10.1542/peds.110.2.285

    authors: Stoll BJ,Hansen N,Fanaroff AA,Wright LL,Carlo WA,Ehrenkranz RA,Lemons JA,Donovan EF,Stark AR,Tyson JE,Oh W,Bauer CR,Korones SB,Shankaran S,Laptook AR,Stevenson DK,Papile LA,Poole WK

    更新日期:2002-08-01 00:00:00

  • Does bed sharing affect the risk of SIDS? American Academy of Pediatrics. Task Force on Infant Positioning and SIDS.

    abstract::The American Academy of Pediatrics endorses and accepts as its policy the position on bed sharing as articulated below by a panel of experts convened by the National Institute of Child Health and Human Development (NICHD). The Panel attended a conference sponsored by the NICHD entitled "Infant Sleep Environment and SI...

    journal_title:Pediatrics

    pub_type: 指南,杂志文章

    doi:

    authors:

    更新日期:1997-08-01 00:00:00

  • INSIGHT Responsive Parenting Intervention and Infant Sleep.

    abstract:OBJECTIVES:Inadequate sleep during infancy is associated with adverse outcomes for infants and families. We sought to improve sleep behaviors and duration through a responsive parenting (RP) intervention designed for obesity prevention. METHODS:The Intervention Nurses Start Infants Growing on Healthy Trajectories (INS...

    journal_title:Pediatrics

    pub_type: 杂志文章,随机对照试验

    doi:10.1542/peds.2016-0762

    authors: Paul IM,Savage JS,Anzman-Frasca S,Marini ME,Mindell JA,Birch LL

    更新日期:2016-07-01 00:00:00

  • Treatment outcomes of overweight children and parents in the medical home.

    abstract:OBJECTIVE:To test in the primary care setting the short- and long-term efficacy of a behavioral intervention that simultaneously targeted an overweight child and parent versus an information control (IC) targeting weight control only in the child. METHODS:Two- to 5-year-old children who had BMI ≥85th percentile and an...

    journal_title:Pediatrics

    pub_type: 杂志文章,随机对照试验

    doi:10.1542/peds.2013-4084

    authors: Quattrin T,Roemmich JN,Paluch R,Yu J,Epstein LH,Ecker MA

    更新日期:2014-08-01 00:00:00

  • Preimmunization anti-pneumococcal antibody levels are protective in a majority of patients with cystic fibrosis.

    abstract:OBJECTIVE:Although invasive pneumococcal disease is infrequent in cystic fibrosis (CF), it is recommended that all patients with CF receive pneumococcal immunization. As part of a comprehensive program to immunize our clinic population, we obtained preimmunization anti-pneumococcal antibody levels. We hypothesized that...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.108.4.e62

    authors: Lahiri T,Waltz DA

    更新日期:2001-10-01 00:00:00

  • Two pediatric cases of variant neurogenic stress cardiomyopathy after intracranial hemorrhage.

    abstract::Takotsubo cardiomyopathy, also known as stress-induced cardiomyopathy, is an acquired form of left ventricular systolic dysfunction seen in the setting of physiologic stress and the absence of coronary artery disease. It is thought to be caused by excessive sympathetic stimulation. It is well described in the adult li...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2013-1881

    authors: Wittekind SG,Yanay O,Johnson EM,Gibbons EF

    更新日期:2014-10-01 00:00:00

  • Predictors of change in the functional status of children with human immunodeficiency virus infection.

    abstract:OBJECTIVE:The purpose of this study was to identify important clinical predictors of change in the functional status of children with perinatally acquired human immunodeficiency virus (HIV) infection. METHODS:Children who were perinatally exposed to HIV underwent evaluation of growth, nutritional, and functional statu...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.106.2.e24

    authors: Missmer SA,Spiegelman D,Gorbach SL,Miller TL

    更新日期:2000-08-01 00:00:00

  • Iron-fortified formulas and gastrointestinal symptoms in infants: a controlled study, With the cooperation of The Syracuse Consortium for Pediatric Clinical Studies.

    abstract::In an attempt to determine whether iron-fortified infant formulas produced gastrointestinal symptoms in infants, we fed two similar formulas, one with and one without iron fortification, to a group of 93 term infants upon discharge from the nursery on the third day of life. Infants were fed the formulas for a period o...

    journal_title:Pediatrics

    pub_type: 临床试验,杂志文章,随机对照试验

    doi:

    authors:

    更新日期:1980-08-01 00:00:00

  • Fetal growth restriction and chronic lung disease among infants born before the 28th week of gestation.

    abstract:OBJECTIVE:Improvement in survival of extremely premature infants over the past several decades has resulted in an increase in the number of infants with chronic lung disease (CLD). Historical neonatal exposures associated with CLD now less frequently precede the disease. There is now increasing interest in exposures an...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2008-3249

    authors: Bose C,Van Marter LJ,Laughon M,O'Shea TM,Allred EN,Karna P,Ehrenkranz RA,Boggess K,Leviton A,Extremely Low Gestational Age Newborn Study Investigators.

    更新日期:2009-09-01 00:00:00

  • Blue Diaper Syndrome and PCSK1 Mutations.

    abstract::Blue diaper syndrome (BDS) (Online Mendelian Inheritance in Man number 211000) is an extremely rare disorder that was first described in 1964. The characteristic finding is a bluish discoloration of urine spots in the diapers of affected infants. Additional clinical features of the first described patients included di...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2017-0548

    authors: Distelmaier F,Herebian D,Atasever C,Beck-Woedl S,Mayatepek E,Strom TM,Haack TB

    更新日期:2018-04-01 00:00:00

  • Resource utilization for observation-status stays at children's hospitals.

    abstract:BACKGROUND AND OBJECTIVE:Observation status, in contrast to inpatient status, is a billing designation for hospital payment. Observation-status stays are presumed to be shorter and less resource-intensive, but utilization for pediatric observation-status stays has not been studied. The goal of this study was to describ...

    journal_title:Pediatrics

    pub_type: 杂志文章,多中心研究

    doi:10.1542/peds.2012-2494

    authors: Fieldston ES,Shah SS,Hall M,Hain PD,Alpern ER,Del Beccaro MA,Harding J,Macy ML

    更新日期:2013-06-01 00:00:00

  • Invasive pneumococcal disease in infants younger than 90 days before and after introduction of PCV7.

    abstract:BACKGROUND:Introduction of the heptavalent pneumococcal conjugate vaccine (PCV7) changed the epidemiology of invasive pneumococcal disease (IPD). We evaluated the changes that occurred after PCV7 introduction among Utah infants aged 1 to 90 days, too young to be fully immunized. METHODS:We identified children <18 year...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2012-3900

    authors: Olarte L,Ampofo K,Stockmann C,Mason EO,Daly JA,Pavia AT,Byington CL

    更新日期:2013-07-01 00:00:00

  • Guidelines for Adolescent Depression in Primary Care (GLAD-PC): Part I. Practice Preparation, Identification, Assessment, and Initial Management.

    abstract:OBJECTIVES:To update clinical practice guidelines to assist primary care (PC) clinicians in the management of adolescent depression. This part of the updated guidelines is used to address practice preparation, identification, assessment, and initial management of adolescent depression in PC settings. METHODS:By using ...

    journal_title:Pediatrics

    pub_type: 杂志文章,实务指引

    doi:10.1542/peds.2017-4081

    authors: Zuckerbrot RA,Cheung A,Jensen PS,Stein REK,Laraque D,GLAD-PC STEERING GROUP.

    更新日期:2018-03-01 00:00:00

  • Erythropoietin concentrations and neurodevelopmental outcome in preterm infants.

    abstract:OBJECTIVE:Erythropoietin therapy is effective in decreasing transfusions to varying degrees in preterm infants. Recent animal studies using erythropoietin doses to achieve serum concentrations > 1000 mU/mL report neuroprotective effects. We evaluated the relationship between erythropoietin concentrations and neurodevel...

    journal_title:Pediatrics

    pub_type: 杂志文章,随机对照试验

    doi:10.1542/peds.2005-3186

    authors: Bierer R,Peceny MC,Hartenberger CH,Ohls RK

    更新日期:2006-09-01 00:00:00

  • Variations in asthma care by race/ethnicity among children enrolled in a state Medicaid program.

    abstract:OBJECTIVE:To examine differences in the process of care for Medicaid-enrolled white, Hispanic, and black children with asthma. DESIGN:Retrospective cohort study using Medicaid claims data to analyze the process of asthma care in 1994, including all white (non-Hispanic), black (non-Hispanic), and Hispanic children (age...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.113.3.496

    authors: Shields AE,Comstock C,Weiss KB

    更新日期:2004-03-01 00:00:00

  • Effect of honey on nocturnal cough and sleep quality: a double-blind, randomized, placebo-controlled study.

    abstract:OBJECTIVES:To compare the effects of a single nocturnal dose of 3 honey products (eucalyptus honey, citrus honey, or labiatae honey) to placebo (silan date extract) on nocturnal cough and difficulty sleeping associated with childhood upper respiratory tract infections (URIs). METHODS:A survey was administered to paren...

    journal_title:Pediatrics

    pub_type: 杂志文章,多中心研究,随机对照试验

    doi:10.1542/peds.2011-3075

    authors: Cohen HA,Rozen J,Kristal H,Laks Y,Berkovitch M,Uziel Y,Kozer E,Pomeranz A,Efrat H

    更新日期:2012-09-01 00:00:00

  • Early-Onset Sepsis Risk Calculator Integration Into an Electronic Health Record in the Nursery.

    abstract:BACKGROUND AND OBJECTIVES:An early-onset sepsis (EOS) risk calculator tool to guide evaluation and treatment of infants at risk for sepsis has reduced antibiotic use without increased adverse outcomes. We performed an electronic health record (EHR)-driven quality improvement intervention to increase calculator use for ...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2018-3464

    authors: Stipelman CH,Smith ER,Diaz-Ochu M,Spackman J,Stoddard G,Kawamoto K,Shakib JH

    更新日期:2019-08-01 00:00:00

  • Opisthotonic posturing with neuromuscular irritability attributable to 4-aminopyridine ingestion by a healthy pediatric patient.

    abstract:INTRODUCTION:4-Aminopyridine (4-AP) is a potassium channel blocker used to increase muscle strength in the treatment of demyelinating diseases such as multiple sclerosis. We describe a case of ingestion by an 8-month-old child that resulted in severe but transient symptoms. CASE REPORT:An 8-month-old boy was found wit...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.111.1.e82

    authors: Velez L,Shirazi F,Goto C,Shepherd G,Roth BA

    更新日期:2003-01-01 00:00:00

  • Recommendations for the prevention of Streptococcus pneumoniae infections in infants and children: use of 13-valent pneumococcal conjugate vaccine (PCV13) and pneumococcal polysaccharide vaccine (PPSV23).

    abstract::Routine use of the 7-valent pneumococcal conjugate vaccine (PCV7), available since 2000, has resulted in a dramatic reduction in the incidence of invasive pneumococcal disease (IPD) attributable to serotypes of Streptococcus pneumoniae contained in the vaccine. However, IPD caused by nonvaccine pneumococcal serotypes ...

    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:10.1542/peds.2010-1280

    authors: American Academy of Pediatrics Committee on Infectious Diseases.

    更新日期:2010-07-01 00:00:00