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File: Study Pdf 115393 | American Journal Of Medical Genetics Part Campbell John
original article out of pocket medical costs and third party healthcare costs for children with down syndrome 1 1 1 2 3 andrew kageleiry david samuelson mei sheng duh patrick ...

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            ORIGINAL ARTICLE
         Out-of-Pocket Medical Costs and Third-Party
         Healthcare Costs for Children With Down Syndrome
                                 1                        1                      1                        2                     3
         Andrew Kageleiry, David Samuelson, Mei Sheng Duh, Patrick Lefebvre, John Campbell,
         and Brian G. Skotko4,5*
         1
          Analysis Group, Inc., Boston, Massachusetts
         2                           
          Groupe d’analyse, Ltee, Montreal, Quebec, Canada
         3
          Department of Economics, Harvard University, Cambridge, Massachusetts
         4
          Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts
         5
          Harvard Medical School, Boston, Massachusetts
         Manuscript Received: 24 June 2016; Manuscript Accepted: 27 October 2016
         Prioranalyseshaveestimatedthelifetimetotalsocietalcostsofa
         person with Downsyndrome(DS);however,nostudiescapture                         How to Cite this Article:
         the expected medical costs that patients with DS can expect to                Kageleiry A, Samuelson D, Duh MS,
         incur during childhood. The study utilized the OptumHealth                    Lefebvre P, Campbell J, Skotko BG. 2016.
         Reporting and Insights administrative claims database from                    Out-of-pocket medical costs and
         1999 to 2013. Children with a diagnosis of DS were identified,                 third-party healthcare costs for children
         andtheirtimewasdividedintoclinicallyrelevantagecategories.                    with Down syndrome.
         Patients with DS in each age category were matched to controls                AmJMedGenetPart A 9999A:1–11.
         without chromosomal conditions. Out-of-pocket medical costs
         and third-party expenditures were compared between the pa-
         tient-age cohorts with DS and matched controls. Patients with
         DS had significantly higher mean annual out-of-pocket costs         information [Skotko, 2005]. Among the many questions asked:
         than their matched controls within each age and cost category.     HowexpensiveisittoraiseachildwithDS?Canourfamilyafford
         Totalannualincrementalout-of-pocketcostsassociatedwithDS           to pay for the medical expenses? What can wereasonably expect to
         were highest among individuals from birth to age 1 ($1,907,        be covered by our medical insurance provider? While the decision
         P<0.001). The main drivers of the incremental out-of-pocket        to continue or terminate a pregnancy often involves complex
         costs associated with DS were inpatient costs in the 1st year of   considerations, accurate and up-to-date information on health
         life ($925, P<0.001)andoutpatientcostsinlateryears(ranging         care expenditures is an important element for some families.
         $183–$623, all P<0.001). Overall, patients with DS incurred           Since October 2011, noninvasive prenatal screening (NIPS),
         incremental out-of-pocket medical costs of $18,248 between         utilizing plasma cell-free DNA, has enabled expectant couples to
         birth and age 18 years; third-party payers incurred incremental    learn as early as 9 weeks into gestation whether their fetus might
         costs of $230,043 during the same period. Across all age catego-   haveDS[Bianchietal.,2012;Nicolaidesetal.,2012;Nortonetal.,
         ries, mean total out-of-pocket annual costs were greater for       2012;Zimmermannetal.,2012].Asresearchcontinues,marketing
         individualswithDSthanthoseofmatchedcontrols.Onaverage,             widens, and insurance coverage expands, more expectant women
         parentsofchildrenwithDSpayanadditional$84permonthfor               will have access to NIPS, inevitably leading to a greater number of
         out-of-pocket medical expenses when costs are amortized over       couples receiving a prenatal diagnosis of DS.
         18 years.  2016 Wiley Periodicals, Inc.
         Key words: Down syndrome; children; out-of-pocket costs;           Andrew Kageleiry and David Samuelson are co-first authors.
                                                                            Abbreviations: CPI, Consumer Price Index; DS, Down syndrome; HMO,
         third-party payers                                                 Health maintenance organization; NIPS, Noninvasive prenatal screening;
                                                                            POS, Point of service; PPO, Preferred provider organization.
                                                                            Correspondence to:
                                                                            Brian Skotko, M.D., M.P.P., Massachusetts General Hospital, 185
         INTRODUCTION                                                       Cambridge Street, Room 2222, Boston, MA 02114.
                                                                            E-mail: bskotko@mgh.harvard.edu
         With prenatal testing for Down syndrome (DS) rapidly evolving,     Article first published online in Wiley Online Library
         an increasing number of expectant couples must make decisions      (wileyonlinelibrary.com): 00 Month 2016
         about their pregnancy options, often with limited time and         DOI 10.1002/ajmg.a.38050
         2016 Wiley Periodicals, Inc.                                                                                                     1
      2                                                                                             AMERICAN JOURNAL OF MEDICAL GENETICS PART A
         Researchers have madeargumentsthatprenataltestingforDSis                Patient Selection
      costeffective,andtheircalculationsgenerallyincludeanincremental            Patients with at least one medical claim associated with a diagnosis
      lifetime cost of raising a child with DS (i.e., the excess lifetime cost   of DS (ICD-9-CM code: 758.0x) were eligible for inclusion in the
      comparedtoatypically developing child) [Ball et al., 2007; Cuckle          study cohort. Patients were also required to be enrolled in their
      et al., 2013; Song et al., 2013]. Ball et al. [2007] concluded that the    family insurance plan as a child (i.e., <18 years of age) and to have
      incremental“societalcostofraisingandcaringforanindividualwith              an identifiable mother and/or father on the insurance plan (for-
      DS is $762,748,” adjusted to 2006 USD. Song et al. [2013] more             mally designated as the “plan subscriber” or “spouse of the
      recently stated that the incremental “cost of Down syndrome” was           subscriber”). Patients were further required to have discernible
      $677,000in2012USD,witharangethatcouldbeashighas$800,000                    demographic,enrollment, and parental characteristics which were
      over a lifetime. Cuckle et al. [2013] price the lifetime incremental       used in a later matching algorithm.
      costs around $900,000 in 2013 USD. All of these papers, however,              Individuals withoutanydiagnosesforchromosomalconditions
      draw their data from the same primary source where incremental             (ICD-9-CMcode:758.xx)intheirobservable medical claims were
      direct costs (e.g., extra expenses from inpatient hospital stays,          eligible for inclusion as potential controls. These patients were also
      outpatient medical visits, long-term care, developmental services,         required to be enrolled as children, have an identifiable mother
      andspecialeducation)andindirectcosts(e.g.,lostproductivitydue              and/orfather,andhavethesameaforementionedcharacteristicsto
      to morbidity and early mortality) were estimated for “the entire           be used in the matching algorithm.
      lifespan”forpersonswithDSborninCaliforniain1988[Waitzman                      The current study was conducted to estimate the incremental
      et al., 1994]. This study is now dated and demographically non-            yearly medical and pharmacy out-of-pocket costs incurred by
      applicabletomanypartsoftheUnitedStates.Perhapsmostimpor-                   patients with DS relative to controls without DS across a number
      tantly,  these   studies   estimated societal    costs   (relevant   for   ofdifferentdevelopmentaltimeperiods.Accordingly,theperiodof
      cost-effectivenessandcost-benefitstudies)andnotindividualcosts,             observationduringwhichpatientswereenrolledintheirinsurance
      which are likely of greater interest to expectant parents.                 plan was split into clinically relevant age categories. Following the
         Few studies have estimated such costs. According to the                 AmericanAcademyofPediatricshealthcareguidelinesforpatients
      2009–2010 National Survey of Children with Special Healthcare              withDS,thefollowingtimeperiodswerestudied:<1yearold,1to
      Needs, approximately 23.6% of families who have a child with DS            <3yearsold, 3 to <5 years old, 5 to <13 years old, and 13 to <18
      reported that they pay $1,000 or more in out-of-pocket medical             yearsold[Bull,2011].Afterselection,patientsinboththestudyand
      expenses each year [Child and Adolescent Health Measurement                potential control cohorts were assigned to one or more age
      Initiative,2009/2010].About32%ofthesefamiliesreportedthatDS                categories depending on the period during which they were
      “caused financial problems for the family” [Child and Adolescent            enrolled in their insurance plan. For individuals with more than
      HealthMeasurementInitiative,2010/2009].Basedonthepaucityof                 one continuous enrollment period, only the first was selected,
      such information in the existing literature, the primary purpose of        regardless of length; patients who were continuously enrolled
      this study is to use a large database to estimate the incremental          across multiple age groups were assigned to each of the respective
      out-of-pocket medical costs for patients with DS, between birth to         groups (Fig. 1).
      18yearsofage,intheUnitedStates.Wealsocalculatethetotalhealth
      care expenditures for private third-party payers in order to provide       Matching Algorithm
      updated data for policymakers and other key stakeholders.
                                                                                 Tocontrol for observable confounding factors, a greedy matching
                                                                                 algorithm was used to match, in a one-to-four ratio, individuals
      MATERIALS AND METHODS                                                      withineachobservedagecategoryinthestudycohort(“patient-age
      Data                                                                       observations”) to patients within the same age group in the
                                                                                 potential control [Miettinen, 1969; Bergstralh and Kosanke,
      This retrospective matched-cohort study was conducted utilizing            1995, 2004]. Greedy matching randomly locates study-control
      data from the OptumHealth Reporting and Insights database. The             pairsthatmeetapre-specifiedsetofcriteria;thismethodisdistinct
      data are based on administrative claims for privately insured indi-        fromoptimalmatchingalgorithmsinthatitmaximizessamplesize
      viduals covered by 82 self-insured Fortune 500 companies with              while also reducing selection bias [Parsons, 2001]. Patient-age
      operations in a broad array of industries and job classifications           observationswerematchedexactlyongender,lengthofcontinuous
      across    the   United     States.   The    OptumHealth        database    eligibility within an age group (180 days), the calendar year
      contains medical claims (dates of service, diagnoses received, pro-        (exact), and their age (1 year) at the beginning of continuous
      cedures performed, places of service, and payment amounts),                eligibility withinanagegroupandtheaverageageoftheirparent(s)
      outpatient pharmacy claims (fill dates, national drug codes, and            at the time of their birth (1 year). Such parental characteristics
      payment amounts), and eligibility information (patient demo-               wereincludedinthematchingalgorithmtocontrolfordifferences
      graphics and enrollment history) for over 18 million individuals,          in factors that may affect a parent’s choice for his or her child’s
      including primary subscribers as well as their covered beneficiaries        medical care. Additionally, an unconditional logistic regression
      (i.e., spouses and dependents).Thedatabasecoverstheperiodfrom              propensity score was estimated for each patient-age observation,
      Q11999toQ12013andhasbeencitedfrequentlyinnumerouspeer-                     modeling the likelihood of a patient-age observation being in the
      reviewed studies of medical costs [Loftus et al., 2014; Rice et al.,       DS cohort. Controlling for the patient’s demographic region,
      2014a,b; Tandon et al., 2014].                                             parental health insurance plan type and parental work industry,
          KAGELEIRY ET AL.                                                                                                                        3
              FIG. 1. In this example, a person with Down syndrome was enrolled in an insurance plan during two separate continuous periods. Only the
              first enrollment period was used for our calculations; data were included in the 0 to <1, 1 to <3, and 3 to <5 age segments. [Color figure
              can be viewed at wileyonlinelibrary.com].
          patient-age observations in the DS, and potential control group          All analyses were performed using SAS Version 9.3 (SAS Insti-
          wererequiredtomatchtowithinaquarterofastandarddeviation               tute, Cary, NC), and statistical significance was evaluated at the
          of the estimated propensity score.                                    0.05 level (two-sided).
          Outcomes                                                              RESULTS
          Followingthematchingprocess,averageyearlyhealthcareutilization        Patient Selection and Characteristics
          costswerecalculatedforeachpatientwithineachagegroup.Usingall
          medical and pharmacy claims during the relevant age ranges, costs     A total of 5,167 individuals with DS and 5,673,804 individuals
          included all out-of-pocket co-pay and co-insurance payments to        without chromosomal conditions were initially selected after all
          measure the direct, real-world costs incurred by patients and their   inclusion/exclusion criteria were applied (Table I). A majority of
          parents. All costs were adjusted to 2013 USD using the medical care   patients in each initial group had both an identifiable mother and
          componentoftheConsumerPriceIndex(CPI);costswereannualized             father. Patients in the study cohort and potential control groups
          over the entire relevant age period by summing all incurred costs (by differedonanumberofdimensions(TableII).Agreaternumberof
          category) and dividing by the length of the individual’s continuous   identifiedpatientswithDSweremale(54.1%vs.51.1%,P<0.001);
          eligibility within the age group [United States Bureau of Labor       these individuals also had significantly longer continuous follow-
          Statistics, 2014]. A similar approach was used to assess the mean     up time in their selected observation period (4.05 vs. 2.83 years,
          annualcoststoprivatethird-partypayers(insurers),bymeasuringall        P<0.001). Patients in the study cohort also had parents with a
          of such incurred payments for the same medical care received by the   significantlygreateraverageageatthetimeoftheirbirthcompared
          selectedpatients.Forthisanalysis,thereal-worldcostsreimbursedby       to the initial control group (33.53 vs. 30.12 years, P<0.001).
          insurers were summarized; these values will differ from the initial   Patients in the two initial groups also differed on a number of
          amounts charged by healthcare providers.                              otherdemographicfactors,suchasregion,insuranceplantype,and
                                                                                other parental characteristics.
          Statistical Analyses                                                     Followingthematchingprocess,patientswerecomparedwithin
                                                                                patient-age groups on a similar set of demographic characteristics.
          Prior to matching, descriptive characteristics were compared be-      These patient-age cohorts were found to be statistically similar on
          tween study and potential control individuals. Comparisons            most dimensions, where most remaining statistical differences
          employed Wilcoxon rank-sum tests for continuous variables             were not clinically meaningful (see Supplementary Materials).
          andchi-squaretestsforcategoricalvariables.Followingthematch-
          ing process, individuals with DS and their matched controls were      Out-of-Pocket Costs for Patients With DS
          compared within each observed age category on a subset of the
          same descriptive characteristics. These comparisons utilized          Across all age categories, mean total out-of-pocket annual costs
          Wilcoxon signed-rank tests for continuous variables and McNe-         were found to be greater among individuals with DS compared to
          mar tests for categorical variables.                                  their matched controls. In terms of incremental costs, annual
            Average yearly health care utilization costs (both to patients      out-of-pocket payments incurred by the cohort with DS relative
          and third-party payers) were compared between the respective          tocontrolswithoutDSwerefoundtobe$1,907higherperyearfor
          patient-age cohorts with DS and matched control individuals.          children <1 year old; $1,673 higher per year for children 1 to <3
          Cost categories included inpatient, outpatient, emergency room,       yearsold;$1,263higherperyearforchildren3to<5yearsold;$973
          home health agency, and other medical costs (e.g., laboratory/        higherperyearforchildren5to<13yearsold;and$537higherper
          pathology costs). Pharmacy costs were also summarized sepa-           yearforpatients13to<18yearsold(allP<0.001,Fig.2).Patients
          rately. All cost dimensions were compared using Wilcoxon              with DS were also found to have significantly higher mean annual
          signed-rank tests.                                                    out-of-pocket costs than their matched controls within individual
      4                                                                                                  AMERICAN JOURNAL OF MEDICAL GENETICS PART A
                                 TABLE I. Selection of Individuals With DS and Individuals Without Chromosomal Anomalies
        Selection criteria                                                                                                               Count
        Selection of individuals with DS (pre-match study group)
        Step 0.                 All beneficiaries                                                                                     18,028,545
        Step 1.                 Identify individuals with at least one diagnosis for DSa,b                                               7,918
        Step 2.                 Identify children with co-enrolled parent
                                a) Individual is enrolled as a childc                                                                    5,230
                                b) Individual has an identifiable mother and/or fatherd,e                                                5,167
                                                                                                                           Mother:                    Father:
                                                                                                                            4,879                      4,621
        Selection of individuals without DS (pre-match potential control group)
        Step 0.                 All beneficiaries                                                                                     18,028,545
        Step 1.                 Identify individuals without any diagnoses for chromosomal anomaliesa,f                               18,008,380
        Step 2.                 Identify children with co-enrolled parent
                                a) Individual is enrolled as a childc                                                                  5,739,023
                                b) Individual has an identifiable mother and/or fatherd,e                                              5,673,804
                                                                                                                           Mother:                    Father:
                                                                                                                         5,230,957                  4,998,205
        DS, Down syndrome.
        a
         Diagnoses assessed in medical claims from Q1 1999 to Q1 2013.
        b
         DS was defined as ICD-9-CM: 758.0x.
        cIndividual was classified as a child of a beneficiary on their insurance enrollment.
        d
         The oldest woman/man classified as a subscriber or spouse on a family insurance enrollment is assumed to be the mother/father (respectively).
        e
         Individuals are also required to have identifiable information used in matching, including gender, date of birth, region, insurance plan type, and parent work industry.
        fChromosomal anomalies were defined as ICD-9-CM: 758.xx.
      cost categories for all age groups. The greatest incremental costs             for patients with DS between birth and age 18 can be calculated
      were found to be inpatient costs in the 1st year of life ($1,183 vs.           assuming that incremental costs within each age category are
      $259, incremental: $925, P<0.001) and outpatient costs in later                constant for each year within that time period. This approach
      years (incremental costs ranging $183–$623, all P<0.001)                       suggeststhatindividualswithDSareobservedtoincurincremental
      (Table III). Incremental out-of-pocket pharmacy expenditures                   total healthcare expenditures of $230,043 between birth and age
      and emergency room costs were smaller and similar across all                   18 years when compared to similar individuals without chromo-
      age groups for patients with DS.                                               somal conditions. When the costs are amortized over 18 years,
         ThetotalincrementalcostincurredtopatientswithDSbetween                      third-party companies pay, on average, an additional $1,065 per
      birth and age 18 can be calculated assuming that incremental costs             month for medical expenses for persons with DS.
      withineachagecategoryareconstantforeachyearwithinthattime
      period. This approach suggests that individuals with DS are                    DISCUSSION
      observed to incur incremental out-of-pocket medical costs of
      $18,248 between birth and age 18 years when compared to similar                Caregivers who have children with DS paid, on average, an addi-
      individuals without chromosomal conditions. When the costs are                 tional$18,248inout-of-pocketmedicalexpenseswhencomparedto
      amortizedover18years,parentswhohavechildrenwithDSpay,on                        parentsofchildrenwithoutDSbetweentheagesofbirthto18years.
      average, an additional $84 per month for medical expenses.                     Whenamortizedoverthistimeperiod,thisamountstoanextra$84
                                                                                     per month. These medical expenses included inpatient costs, out-
      Total Healthcare Expenditures to Third-Party                                   patientcosts,emergencyroomvisits,homehealthagencycosts,and
      Payers                                                                         outpatient pharmacy costs. The most costly services were inpatient
                                                                                     costs in the 1st year of life when the need for surgery is greatest.
      Across all age categories, mean total healthcare expenditures were             During this time, approximately 40–50% of infants with DS are
      found to be significantly greater among individuals with DS                     identified as having a cardiac condition, many of whom will need
      comparedtotheirmatchedcontrols.Theannualincrementalcosts                       surgicalrepair[Bull,2011].Gastrointestinalcomplicationssuchasa
      associated withDSincurredtothird-partypayerswerefoundtobe                      tracheoesophagealfistula,duodenalobstruction,Hirschsprungdis-
      $80,864 per year for children <1 year old; $18,950 per year for                ease, and an imperforate anus may also necessitate surgery
      children 1 to <3 years old; $11,228 per year for children, 3 to <5             [Freeman et al., 2009]. Likewise, cataracts can also occur during
      years old; $7,586 per year for children, 5 to <13 years old; and               thistimeframe,requiringsurgicalcorrectionbyanophthalmologist
      $5,627 per year for patients, 13 to <18 years old (all P<0.001, see            [Creavin and Brown, 2009]. Still others develop infantile spasms,
      TableIV).Thetotalincrementalcostincurredtothird-partypayers                    requiring hospitalization for medication control of their seizures
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...Original article out of pocket medical costs and third party healthcare for children with down syndrome andrew kageleiry david samuelson mei sheng duh patrick lefebvre john campbell brian g skotko analysis group inc boston massachusetts groupe d analyse ltee montreal quebec canada department economics harvard university cambridge division genetics pediatrics general hospital school manuscript received june accepted october prioranalyseshaveestimatedthelifetimetotalsocietalcostsofa person downsyndrome ds however nostudiescapture how to cite this the expected that patients can expect a ms incur during childhood study utilized optumhealth p j bg reporting insights administrative claims database from diagnosis were identied andtheirtimewasdividedintoclinicallyrelevantagecategories in each age category matched controls amjmedgenetpart without chromosomal conditions expenditures compared between pa tient cohorts had signicantly higher mean annual information among many questions asked than t...

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