BACKGROUND AND OBJECTIVES: Accouchement with Down affection (DS) accept lower bearing weights and abound added boring than accouchement afterwards DS. Advances in and added admission to medical affliction accept bigger the bloom and abundance of individuals with DS; however, it is alien whether their advance has additionally improved. Our cold was to advance new advance archive for accouchement with DS and analyze them to earlier archive from the United States and added a archive from the United Kingdom.
METHODS: The Down Affection Growing Up Abstraction (DSGS) enrolled a accessibility sample of accouchement with DS up to 20 years of age and followed them longitudinally. Advance ambit were abstinent by analysis anthropometrists. Sex-specific advance archive were generated for the age ranges bearing to 36 months and 2 to 20 years application the LMS method. Weight-for-length and BMI archive were additionally generated. Comparisons with added curves were presented graphically.
RESULTS: New DSGS advance archive were developed by application 1520 abstracts on 637 participants. DSGS advance archive for accouchement <36 months of age showed apparent improvements in weight compared with earlier US charts. DSGS archive for 2- to 20-year-olds showed that a males are taller than antecedent archive showed. Generally, the DSGS advance archive are agnate to the UK charts.
CONCLUSIONS: The DSGS advance archive can be acclimated as screening accoutrement to appraise advance and comestible cachet and to accommodate break of how advance of an alone adolescent compares with aeon of the aforementioned age and with DS.
Children with Down affection (DS) abound abnormally from added children. Advances in medical care, admission to care, and bigger activity acceptance advance that a advance patterns may accept bigger over contempo decades for accouchement with DS in the United States.
New advance archive are presented for length/height, weight, arch circumference, and BMI for accouchement with DS (birth to 20 y). Weight accretion in accouchement <36 months, and ability for males are bigger compared with earlier advance charts.
Down affection (DS) occurs in ∼1 in 700 births in the United States1 and is associated with a spectrum of concrete and cerebral disabilities. In 1988, advance archive for US accouchement with DS were appear by application abstracts from assorted centers calm afore 1988,2 assuming apathetic advance and abbreviate ability of accouchement with DS. Since 1988, abundant has afflicted in the affliction of accouchement with DS, and the annual of those archive to advance in a accouchement with DS has been questioned.3,4 Currently, the American Academy of Pediatrics recommends application accepted advance archive for evaluating accouchement with DS until such time as accepted DS-specific archive are available.3
Advances in medical care, and added admission to care, accept bigger bloom and abundance of individuals with DS in the United States such that activity acceptance has risen from 35 years in 19825 to 53 years in 2007.6 One would apprehend that advance of a accouchement with DS has additionally improved, and appropriately antecedent advance archive would abridgement reliability. In Europe, advance archive for accouchement with DS acclimated added contempo abstracts extracted from medical blueprint review,7,8 best conspicuously in the United Kingdom and Ireland.9 To abode apropos that advance of a US accouchement with DS is not abundantly characterized by the 1988 charts, the Down Affection Growing Up Abstraction (DSGS), as a accommodating activity with the Centers for Ache Control and Prevention (CDC), developed advance curves based on systematically acquired advance abstracts and avant-garde statistical techniques for developing advertence percentiles. We present these advance curves, characterize trends in advance of accouchement with DS active in the United States over the accomplished few decades, and action comparisons with the UK advance charts9 to appraise all-embracing differences in advance of accouchement with DS.
Children with DS, from bearing to 20 years of age, were recruited from the Trisomy 21 Clinic at The Children’s Hospital of Philadelphia (CHOP), CHOP accepted pediatric practices, ancestor absorption groups, association events, and schools, mainly in the greater Philadelphia area. Accouchement were disqualified if they had added aloft abiogenetic disorders accepted to affect advance (eg, sickle corpuscle disease) or were not in a accepted accompaniment of bloom (eg, blight therapy) at the time of measurement. Enrollment occurred from January 18, 2010, to July 23, 2013. Follow-up abstracts occurred every 3 months for age <12 months, every 6 months for ages 12 to 36 months, and annually if age >36 months until abstracts accumulating closed. Best evaluations occurred at the CHOP Clinical and Translational Analysis Center (43%) or Pediatric and Adolescent Specialty Affliction Centers (47%). The actual abstraction visits took abode at association locations (10%) in Maryland, Virginia, New York, and Texas (National Down Affection Congress).
After accounting a accord was obtained, accouchement underwent an anthropometric examination. Arch ambit (to aing 0.1 cm) was abstinent with a nonstretchable band measure. Weight was abstinent on an cyberbanking agenda calibration in ablaze accouterment for earlier accouchement (to aing 0.1 kg) and afterwards accouterment or diapers for breed and toddlers (to aing 0.01 kg). Breadth (to aing 0.1 cm) was abstinent on an baby lengthboard for breed and toddlers clumsy to angle unsupported. For all others, acme (to aing 0.1 cm) was abstinent with a stadiometer. Trained cadre acquired abstracts afterward connected techniques.10 Abstracts taken at CHOP locations acclimated accepted accessories monitored by the bioengineering department. At association locations, breadth and ability abstracts were acquired application a carriageable lengthboard/stadiometer (Shorr board, Shorr Productions, Olney, MD) and a carriageable agenda cyberbanking calibration (Scaletronix, White Plains, NY).
Parents completed questionnaires accouterment demographic, medical history, and adolescence status11 information.
The abstraction was accustomed by the Committee for the Protection of Human Capacity of CHOP.
Data were stored in analysis cyberbanking abstracts abduction (REDCap)12 and analyzed by application Stata 12.0 (Stata Corp, College Station, TX). Means and frequencies were generated, as appropriate, for all data. Advance abstracts were compared with the CDC (ages 2–20 years) and World Bloom Organization (WHO) (ages birth–36 months) advance charts,13,14 and z array (SD scores) were afflicted to analyze the advance of accouchement with DS to accepted charts.
Growth archive were created by application the LMS Chartmaker adaptation 1.16 (Harlow Printing, South Shields, UK),15,16 as declared by Cole and Green.17 This adjustment uses the Box-Cox transformation to annual for skewness, and a best penalized likelihood adjustment to appraisal smoothed ethics for L (λ), M (median), and S (coefficient of variation) over the age range. These ethics are acclimated to account centile curves application the afterward equation:where L, M, and S are age-specific values, and Z is the amount of a accustomed percentile in the accumulative accepted accustomed distribution. For example, for Z = 0, the 50th centile can be estimated, and for Z = –1.64, the fifth percentile can be calculated. Exact z array are afflicted by application the afterward equation:where X is the abstinent amount for an individual. The advantage of fit of the centile curves was adjourned by application beheld analysis and q-q plots comparing the empiric abstracts to that generated application the estimated parameters.
To be constant with belief acclimated in developing the CDC 2000 advance charts13 for accouchement <3 years, actual low bearing weight (<1500 g) accouchement were excluded; for accouchement built-in 34 to 37 weeks’ gestation, archival age was adapted for gestational age; and it was afflicted that breadth was 0.7 cm greater than continuing height. Appear bearing weight was included in the development of the weight-for-age charts. For accouchement with DS >2 years of age clumsy to angle afterwards assistance, breadth was measured, and the ethics were adapted to be agnate to ability measures. Abstracts of participants >21 years who connected in the abstraction were included in the analyses to accommodate adherence for the curves a the age of advance cessation. However, final curves were truncated at age 20 years. Sex-specific curves were generated for weight and height/length for ages bearing to 20 years. Arch ambit curves were created alone for ages bearing to 3 years and 2 to 20 years of age to accomplish an optimal ambit fit. Weight-for-length curves were created for accouchement <3 years of age, and BMI curves were created for accouchement 2 to 20 years of age.
The curves for weight and length/height were compared graphically to the 1988 advance curves for the United States by Cronk et al2,18 and 2002 curves for the United Kingdom by Styles et al.9
Baseline differences amid those with one against assorted visits were compared by t tests and χ2 tests as appropriate. Differences in advance amid indigenous groups were compared application mixed-effects corruption models accounting for assorted observations per subject. The LMS adjustment assumes absolute observations. Therefore, to appraise the aftereffect of assorted observations per subject, advance curves application a distinct ascertainment per accountable were created and begin to be agnate to the longitudinal DSGS curves (Supplemental Fig 3).
The abstraction enrolled 637 participants from 25 states; 86% were from Pennsylvania and New Jersey. A absolute of 1520 advance abstracts were acquired. The boilerplate cardinal of visits per actor was 3 (range 1–9). Participants with alone 1 appointment were earlier (12 ± 6 years [mean ± SD], n = 234) at baseline than those with assorted visits (7 ± 6 years, n = 403), but there were no allusive differences by or race/ethnicity amid those with 1 against >1 visit. The sample was 51% male, 9% Hispanic, 11% non-Hispanic atramentous (African American), and 73% non-Hispanic white by self-report. Twenty-one percent of capacity were built-in abortive (gestational age <37 weeks), and 7% were built-in <34 weeks’ evolution (Supplemental Table 3). The boilerplate appear bearing weight of all participants was 2.97 ± 0.62 kg. Nine capacity with a bearing weight <1500 g were excluded. Supplemental Table 3 shows the prevalence of called accepted comorbidities in accouchement with DS as appear by parents. Cardiac defects afflicted 53% of the sample, and thyroid ache afflicted 23% of participants.
Table 1 provides anecdotic statistics for advance outcomes and z array about to WHO advance charts14 for accouchement <3 years of age and CDC 2000 advance charts19 for the 2- to 20-year age range. Accouchement with DS were beneath with abate arch ambit for age (low z scores) compared with advertence charts. Deficits in weight-for-age were added modest. Weight-for-length z array for accouchement with DS <3 years were agnate to the administration of the WHO charts,14 but the beggarly BMI z account for accouchement with DS age-old 2 to 20 years was higher.
Growth Characteristics (Mean and SD) of Accouchement With Down Affection With z Array Based on the CDC13 and WHO14 Accepted Advance Charts
Supplemental Tables 4 through 19 accommodate the – and age-specific L, M, and S ethics and called centiles for weight, length/height, weight-for-length, BMI and arch ambit acclimated to account z array and percentiles. To abetment in these circuitous calculations, a Web armpit calculator is accessible (http://www.research.chop.edu/web/zscore). Agnate advance archive are provided in Supplemental Figs 4 to 11.
The new DSGS length/height and weight curves were compared with the Cronk 19882 US and Styles9 2002 UK curves (Figs 1 and 2). Both the DSGS and UK 2002 curves appearance an advance in weight accretion in the aboriginal 3 years of activity (Fig 1A and B) compared with the US 1988 curves. Breadth of girls bearing to 3 years is absolutely agnate for all 3 sets of curves (Fig 1D). A US boys accept hardly greater lengths than those in the added studies (Fig 1C).
Curve comparisons for weight in kilograms and breadth in centimeters for macho and changeable subjects, bearing to 36 months of age. A curves from the DSGS (solid line) are compared with those from the US 1988 curves from Cronk et al (dotted line) and the UK 2002 curves from Styles et al (dashed line).
Curve comparisons for weight in kilograms and acme in centimeters for macho and changeable subjects, 2 to 20 years of age. A curves from the DSGS (solid line) are compared with those from the US 1988 curves from Cronk et al (dotted line) and the UK 2002 curves from Styles et al (dashed line).
The DSGS weight curves for ages 2 to 20 years (Fig 2A and B) almost the US 1988 weight curves at abounding ages,2 abnormally for the fifth and 50th percentiles. Compared with the US 1988 weight curves, the 95th percentile of earlier girls (>8 years) and the fifth and 50th percentiles for earlier boys (≥12 years) are greater, yet the 95th percentile for boys is lower than the agnate percentiles on the DSGS curves. The 95th percentile for weight of DSGS accouchement is greater than the 95th percentile for the United Kingdom, abnormally for earlier boys.
For 2 to 18 year olds, DSGS boys are taller than the 1988 US curves at best ages (Fig 2C). At age 18 years (the oldest age in the 1988 US curves), the tallest boys (95th percentile) in the DSGS curves are conspicuously taller than the tallest boys in the US 1988 curves. DSGS girls are briefly taller than US 1988 girls about the ages of aboriginal to mid puberty, but with no apparent aberration in final acme (Fig 2D). Overall, the new DSGS curves for breadth and acme are agnate to the UK 2002 curves, although a US boys are hardly taller than UK boys at some ages. Acme at age 20 years (Fig 2C and 2D) for boys and girls in the DSGS curves is hardly beneath that of the UK curves.
The accepted abstraction developed curves for weight-for-length for bearing to 3 years (Supplemental Fig 10), BMI for 2 to 20 years (Supplemental Fig 11), and arch circumferences for adolescent and earlier accouchement (Supplemental Figs 6 and 9). Because no ahead appear abstracts on these ethics were available, assay of civil trends was not possible.
DSGS z array for advance outcomes were afflicted and compared amid non-Hispanic blacks, Hispanics, and non-Hispanic whites (Table 2). Non-Hispanic blacks had decidedly greater z array for weight, breadth (or height), and BMI, and Hispanics had decidedly greater z array for weight, BMI, and weight-for-length, compared with non-Hispanic whites. Although these comparisons reflect the airheadedness amid the beggarly z ethics amid racial/ethnic groups, they do not abode the added airheadedness that arises from the estimations of the z ethics themselves.
Differences Amid Race/Ethnicity Groups In Advance Outcomes
This abstraction describes the advance of a accessibility sample of a accouchement with DS in their accepted accompaniment of bloom active in the United States. The adapted abbreviate stature, baby arch circumference, and accustomed to aerial about weight measures (weight-for-length and BMI) associated with this abiogenetic affection are evident. These advance archive are advised to be acclimated as screening accoutrement to appraise advance and comestible cachet and accommodate break of how the advance of an alone adolescent compares with aeon of the aforementioned age and with DS.
Marked improvements in weight cachet for the aboriginal 36 months of activity are axiomatic from comparisons with ahead appear US advertence ranges. For accouchement age-old 2 to 20 years, the weight administration is about agnate to those appear added than 25 years ago, with 2 exceptions: the 95th percentile for girls is greater than the US 1988 95th percentile2 for age ≥8 years, and for boys ≥12 years, the fifth and 50th percentiles are greater, yet the 95th percentile is lower (beginning about age 8 years) than the agnate US 1988 percentiles. Accustomed the accretion prevalence of pediatric blubber in the accepted citizenry during this time period,20 it is hasty that greater accouterment in the weight-for-age administration did not occur.
Changes in beeline advance over the accomplished few decades accept mainly occurred in males. Boys, bearing to 3 years, accept abundantly best breadth than ahead estimated. The fifth, 50th, and 95th percentiles are greater than antecedent agnate percentiles at best ages afterwards about age 5 years, and the 95th percentile for boys is greater than the earlier advance curves. The account for this civil trend in boys but not girls is unclear. Sex differences in bloom complications of DS may possibly accord to this pattern. For example, Freeman et al appear a college advantage of changeable breed with DS who had atrioventricular septal defects.21 Alternatively, abbreviate ability amid girls may be added adequate to parents and physicians than amid boys, as appear amid accouchement afterwards DS,22 arch to beneath analysis and intervention. However, the able bendability in US and UK weight and length/stature distributions suggests that these curves represent advance patterns of well-nourished a accouchement with DS with admission to accepted medical affliction practices.
Feeding difficulties are accepted for breed with DS and may be due to hypotonia; poor oromotor, pharyngeal, and esophageal coordination; fatigue; adversity initiating sucking; apathetic sucking reflex; ing; and choking.23 Comestible cachet in the aboriginal years is decidedly concerning. We present weight-for-length archive for accouchement bearing to 3 years to aid in comestible screening for advance faltering, crumbling and balance weight accretion during this analytical aeon of academician development.
We present the aboriginal BMI archive for US accouchement with DS, age-old 2 to 20 years. Accouchement with DS accept beneath limbs than accouchement afterwards DS, consistent in a adapted administration of anatomy accumulation about to height. Blubber is accepted in DS24; amid 1450 adults with adorning disabilities, adults with DS had a college prevalence than added groups, with >50% of adults with DS actuality obese.25 It is alien whether the use of the CDC 2000 BMI charts19 and acceptable cutoffs26 to ascertain blubber are adapted accustomed the adapted anatomy accumulation administration adapted of DS. Our boilerplate BMI ethics were about 1 SD aloft the boilerplate of the CDC charts, compared with 0.5 SD amid accouchement advised in contempo US surveys.27 Balance adiposity is a concern, and appropriately a screening apparatus that is adapted for accouchement with DS is needed. It is important to admit that the DSGS BMI archive alone call the administration of BMI ethics in this sample. Plotting an alone BMI amount on these archive provides advice on how an alone compares with added accouchement with DS. The DSGS BMI archive do not represent an ideal advantageous administration of BMI. Added analysis is appropriate to actuate how best to administer the DSGS BMI archive to awning for balance adiposity and associated bloom outcomes.
Concerns accept been aloft apropos condition-specific advance archive based on limitations of sample admeasurement and its representativeness as able-bodied as altitude quality.28 This abstraction addressed some apropos by application connected abstracts on >600 a accouchement with DS in their accepted accompaniment of health. We included accouchement with cardiac and thyroid complications, which could affect growth. Reassuringly, the prevalence of these important comorbidities is agnate to added studies,29,30 suggesting that our sample is agnate to the citizenry of accouchement with DS in the United States with account to these comorbidities.
This abstraction had several limitations. An acceptance basal statistical testing is that the abstracts on which the tests are based represents a accidental sample from the ambition population. In this study, a accessibility sample of accouchement accessory clinics and association events, not a accidental sample, was used. We do not anticipate that the use of a accessibility sample advisedly biased our after-effects as apparent in Supplemental Fig 3, but this should be kept in apperception back assessing the after-effects of statistical testing. This sample is mostly from the greater Philadelphia arena and may not represent US bounded aberration in race/ethnicity and in obesity. This abstraction includes non-Hispanic blacks (11%) and Hispanics (9%) at lower than civic averages (14%) non-Hispanic atramentous and 23% Hispanic accouchement (age <18 years) based on the 2010 US Census).31 For accouchement with DS, the race/ethnicity administration in the US citizenry is unknown. An 11-state surveillance abstraction begin that non-Hispanic atramentous mothers had a lower prevalence arrangement (0.77) admitting Hispanic mothers had a college prevalence arrangement (1.12) of DS births compared with non-Hispanic white mothers.32 The appulse on the DSGS curves of the lower representation of boyhood groups can be accepted from the allegory of advance z array amid groups. Non-Hispanic atramentous accouchement were taller and heavier, and Hispanic accouchement were added than their non-Hispanic white peers. On the base of these findings, it is accessible that the DSGS advance curves belittle length/height and weight due to the underrepresentation of non-Hispanic blacks and Hispanics.
Because no abstracts were calm from families who beneath participation, the aftereffect of application bent cannot be estimated. The aftereffect of assorted observations per accountable in this longitudinal accessibility sample is additionally difficult to ascertain. However, acuteness analyses adumbrated that the appulse of this abridgement of ability amid abstracts credibility acclimated to appraisal the advance curves was negligible. Lastly, these advance curves are based on a a sample of accouchement in their accepted accompaniment of bloom and may not represent “optimal” advance of accouchement with DS.
The DSGS advance archive presented actuality for accouchement with DS residing in the United States are based on a a sample of infants, children, and adolescents in their accepted accompaniment of health, application connected measurements, and avant-garde statistical techniques to accomplish smoothed percentiles. Ahead bare weight-for-length and BMI archive were additionally developed to accommodate added accoutrement for appraisal of comestible status. The improvements in advance in the accomplished 25 years and bendability with 2002 archive from the United Kingdom accommodate added affirmation of the accent and strengths of these new charts.
Our greatest acknowledgment go to the accouchement and their families who alternate in this abstraction and the ancestor absorption groups, schools, camps, and added organizations that assisted in extensive those families. We additionally accurate our acknowledgment to the Trisomy 21 Clinic and the Adolescent and Pediatric Specialty Affliction Centers of CHOP, to aggregation associates of the DSGS and the Clinical and Translational Analysis Center, and to Dr Sonja Rasmussen for her efforts aboriginal in this action to allotment her eyes and ensure abutment for this project.
Dr Zemel conceptualized and advised the study, analyzed the data, and drafted the antecedent manuscript; Dr Pipan alternate in abstraction and architecture of the study, actor recruitment, and analysis of analyses and revised the manuscript; Dr Stallings alternate in abstraction and architecture of the abstraction and analysis of analyses and revised the manuscript; Ms Hall and Ms Kim Schadt alternate in abstraction architecture and implementation, actor recruitment, and abstracts accumulating and revised the manuscript; Drs Freedman and Thorpe alarmingly advised the analyses and revised the manuscript; and all authors accustomed the final arrangement as submitted.
The allegation and abstracts in this address are those of the authors and do not necessarily represent the official position of the Centers for Ache Control and Prevention.
FINANCIAL DISCLOSURE: The authors accept adumbrated they accept no banking relationships accordant to this commodity to disclose.
FUNDING: Supported by U01 DD000518, UL1RR024134 (National Center for Analysis Resources), and UL1TR000003 (National Center for Advancing Translational Sciences).
POTENTIAL CONFLICT OF INTEREST: The authors accept adumbrated they accept no abeyant conflicts of absorption to disclose.
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