Laura Bava|Jemily Malvar|Richard Sposto|Maki Okada|Betty Gonzalez?Morkos|Lisl M. Schweers|Christopher Nuñez|Kathy Ruccione|Ernest R. Katz|David R. Freyer
A parent?directed intervention for addressing academic risk in Latino survivors of childhood leukemia: results of a pilot study
Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|University of Southern California|Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|University of Southern California|Children's Hospital of Los Angeles|Children's Center|Children's Hospital of Los Angeles|Children's Center|University of Southern California|Children's Hospital of Los Angeles|Children's Center|University of Southern California
psychooncologyvolume 25 issue 10 p 12461249 clinical correspondencefree access parentdirected intervention addressing academic risk latino survivors childhood leukemia results pilot study laura bava laura bava survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorjemily malvar jemily malvar childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorrichard sposto richard sposto childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usa department preventive medicine keck school medicine university southern california los angeles ca usasearch papers authormaki okada maki okada childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorbetty gonzalezmorkos betty gonzalezmorkos childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorlisl schweers lisl schweers survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorchristopher nuez christopher nuez childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorkathleen ruccione kathleen ruccione survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usasearch papers authorernest r katz ernest r katz childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usasearch papers authordavid r freyer corresponding author david r freyer dfreyerchlauscedu survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usacorrespondence 4650 sunset boulevard mailstop 54 los angeles ca 90027 usa email dfreyerchlauscedusearch papers author laura bava laura bava survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorjemily malvar jemily malvar childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorrichard sposto richard sposto childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usa department preventive medicine keck school medicine university southern california los angeles ca usasearch papers authormaki okada maki okada childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorbetty gonzalezmorkos betty gonzalezmorkos childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorlisl schweers lisl schweers survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorchristopher nuez christopher nuez childrens center cancer blood diseases childrens hospital los angeles los angeles ca usasearch papers authorkathleen ruccione kathleen ruccione survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usasearch papers authorernest r katz ernest r katz childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usasearch papers authordavid r freyer corresponding author david r freyer dfreyerchlauscedu survivorship supportive care program childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa childrens center cancer blood diseases childrens hospital los angeles los angeles ca usa division hematology oncology blood marrow transplantation department pediatrics keck school medicine university southern california los angeles ca usacorrespondence 4650 sunset boulevard mailstop 54 los angeles ca 90027 usa email dfreyerchlauscedusearch papers author first published 06 june 2016 httpsdoiorg101002pon4188citations 5aboutsectionspdf toolsrequest permissionexport citationadd favoritestrack citation shareshare give accessshare full text accessshare fulltext accessplease review terms conditions use check box share fulltext version articlei read accept wiley online library terms conditions useshareable linkuse link share fulltext version article friends colleagues learn morecopy url share linkshare onfacebooktwitterlinkedinredditwechat introduction acute lymphoblastic leukemia common form childhood cancer 1 although approximately 90 patients become longterm survivors 40 may develop treatmentrelated neurocognitive dysfunction impairs learning school performance 13 consequently routine neuropsychological screening recommended childrens oncology group cog longterm followup guidelines childhood survivors 4 however low socioeconomic status ses associated lower cognitive academic functioning 5 hypothesized exacerbate treatmentrelated neurocognitive deficits 6 low ses overrepresented latinos minority groups lower academic function appear pronounced cultural settings cultural language literacy differences may adversely impact care participation research 7 large proportion childhood survivors institution challenged factors developed innovative psychoeducational intervention improve academic success population report favorable pilot experience methods general description clinical service comprises parentdirected intervention increase academic support schoolaged survivors childhood although service available every childhood survivor treatmentrelated risk neurocognitive dysfunction incorporates key elements cultural linguistic competency 8 address common barriers facing substantially latino urban low ses population treated institution table s1 services information provided spanish appropriate bilingualbicultural psychologist data collection approved institutional review board irb written informed consentassent covering project obtained part ongoing irbapproved cancer survivorship database mechanism permits analytical use data collected purposes routine care study objectives design nonrandomized prospective cohort pilot study designed 1 assess feasibility preliminary efficacy clinical service routinely provided institution 2 determine predictors participation participants recruitment childhood survivors currently kindergarten12th grade undergoing first comprehensive evaluation cancer survivorship clinic eligible receive complete service described herein parents children routinely educated clinical survivorship team regarding treatmentrelated factors increase survivors risk neurocognitive dysfunction parentchild dyads recruited child psychologist reinforcement risk factors invitation utilize service although cultural competency focused predominantly latino composition patient population service open survivors raceethnicity receive general benefits academic support procedures intervention delivered two encounters herein term intervention used encompass encounters participants defined chose receive intervention first encounter cognitive academic socioemotional functioning assessed standardized measures requiring 4 h administer table s2 parents completed surveys describing demographics language preferences ses characteristics parental knowledge attitudes behaviors selfefficacy related childs education regardless prior cancer treatment exposures dyads assigned either standard tailored ie comprehensive individualized intervention based principally psychoeducational assessment results standardized cognitive test results 10 standard deviation normative mean two areas intelligence verbal memory executive functioning andor 2 test performance grade level math reading comprehension interpreting verbalbased test results allowance made english language development bilingual children second encounter dyads attended feedback session constituted standard intervention receive psychoeducational assessment results general recommendations academic support dyads assigned tailored intervention received basic information constituting standard intervention addition received augmented personalized advocacy training securing additional school community homebased resources lasting approximately 2 h emphasis skillstraining empower parents effective advocates using extensive oral teaching supplemented bilingual plainlanguage handouts well teach back key points scenarios anticipate upcoming challenges interacting schools table s1 parents participants regardless intervention level completed fiveitem likertscale satisfaction survey intervention designed completed within approximately 46 weeks recruitment although flexibility offered accommodate family needs within 4 weeks psychologist contacted parent assess followthrough recommendations made additional information suggestions provided time whenever requested statistical analysis patient characteristics compared elected participants declined nonparticipants participate psychoeducational intervention using 2 test categorical variables logistic regression continuous variables characteristics pvalue 015 table 1 table s3 entered preliminary multivariate model predict participation reverse stepwise selection predictors likelihood ratio test pvalue 005 remained final multivariate model approach validated assessing changes significance reintroduction eliminated predictors parent language highly correlated raceethnicity parents declined participation nonspanish speaking stratified mantelhaenszel test used investigate effects maternal language verified using 10000 replicate permutation testing pvalues twosided 005 used define significance statistical computations performed using stata table 1 cohort characteristics n 63 participants n 49 nonparticipants n 14 p patient information age years range mean diagnosis 49 12126 74 10152 0012 mean time service 109 52181 145 80185 0001 mean time interval posttreatment years range 32 03141 42 10110 0244 sex male 23 469 11 786 0036 female 26 531 3 214 raceethnicity whitenonhispanic 3 61 3 214 0001 latino 44 898 6 429 asian 2 41 4 286 africanamerican 0 0 1 71 bolded pvalues indicate statistically significant results clinical sociodemographic treatment characteristics cohort shown table 1 table s3 multiple parental risk factors relevant academic performance identified including limited english fluency education employment income many risks less frequent among nonparticipating dyads completion intervention predictors participation 63 eligible dyads 49 778 elected participate among participants high level engagement noted across standard tailored interventions 4849 979 completed encounters thirtytwo 49 participants 653 met criteria tailored intervention high level participant engagement characterized table s4 implies acceptability intervention procedures including psychoeducational assessments nonparticipants tended older nonlatino privately insured table 1 table s3 multivariate regression analysis whitenonhispanic raceethnicity less likely latinos participate odds ratio 006 95 confidence interval 95ci 0004 088 001 95ci 0001 017 respectively compared patients elementary school highschoolers 9th12th grade less likely participate 003 95ci 0003 031 additionally patients spanishspeaking mothers likely participate p 0001 outcomes followup reported parents 4weeks postintervention summarized table 2 even early time point majority already followed several recommendations increase enhance academic support services activities including relatively complex tasks requesting iep evaluation table 2 reported completion recommendations 4weeks postintervention n 49 action resource referral recommendeda n participants completed n recommended schoolfocused initiate educational support program eg iep 504 22 449 14 636 request enhancement existing services 7 143 7 100 request additional school resources 15 306 5 333 communityfocused enrichment activities eg art music sports 25 510 11 440 legal advocacy referral 3 61 3 100 mental health services limited intervention service psychologist 5 102 4 800 mental health referral community site 22 449 7 318 within institution 6 122 2 333 recommendations mutually exclusive two made patients postintervention survey participating parents found vast majority learned new information anticipated increased school success higher academic expectations child satisfied learned however parents perceived deficits english proficiency educational levels limited improvement managing childs homework table s5 discussion results provide insight multiple yet sometimes underappreciated neurocognitive risks facing disadvantaged populations childhood survivors pilot study described feasible approach addressing risks using culturally linguistically competent intervention yielded high levels patientparent engagement early indicators followthrough parental satisfaction findings consistent recently published study found 90 latino parents childhood cancer survivors expressed interest culturally competent intervention aimed reducing neurocognitive late effects 9 intervention based premise neurocognitive assessment standard component survivorship care atrisk patients plays crucial role addressing immediate school needs well longerterm educational vocational employment outcomes 24 10 believe critical ingredient approach culturally competent design implementation table s1 includes culturally linguistically competent psychologist parents chose participate nonspanish speaking difficult separate completely effects language differences raceethnicity ses also possible focus latino cultural competency could influenced choice groups participate selection measures used psychoeducational assessment sought balance comprehensiveness testing time required resourcechallenged families importance emotionalbehavioral functioning academic performance acknowledged consideration could given weighting heavily inclusion additional formal measures currently psychologist funded foundation grant although may represent challenge institutions feel highvolume treatment centers like treating many latino patients obligation pursue highest possible standards survivorship care includes cultural competency delivering vital academic support achieve longterm financial sustainability service center pursuing enhanced billing reimbursement practices shown feasibility acceptance approach pilot study evaluation impact require randomized clinical trial gain complete understanding factors affecting participation compare intervention usual practice including longitudinal data collection academic outcomes key points survivors childhood acute lymphoblastic leukemia risk treatmentrelated neurocognitive dysfunction may exacerbated factors related low socioeconomic status linguistic disparities approximately half childhood lymphoblastic leukemia survivors institution latino exhibit multiple sociodemographic risk factors threaten academic functioning better serve survivors developed culturally competent parentdirected intervention improve academic success feasible deliver shows preliminary evidence efficacy valued families approach outlined enables pediatric cancer treatment centers provide culturally competent assessment academic support exceed published guidelines survivors neurocognitive risk financial disclosure relevant financial relationships acknowledgement work supported larry helen hoag foundation conflict interest authors declared conflicts interest supporting information filename description pon4188sup0001supplementaltablesdocword document 140 kb supporting info item please note publisher responsible content functionality supporting information supplied authors queries missing content directed corresponding author article references 1 nna howlader krapcho j garshell n neyman sf altekruse cl kosary yu j ruhl z tatalovich h cho mariotto dr lewis hs chen ej feuer ka cronin eds seer cancer statistics review 1975 2010 2013 national cancer institute httpseercancergovcsr19752010 2peterson cc johnson ce ramirez ly et al metaanalysis neuropsychological sequelae chemotherapyonly treatment pediatric acute lymphoblastic leukemia pediatr blood cancer 2008 511 99 104 3campbell lk scaduto sharp w et al metaanalysis neurocognitive sequelae treatment childhood acute lymphocytic leukemia pediatr blood cancer 2007 491 65 73 4nathan pc patel sk dilley k et al guidelines identification advocacy intervention neurocognitive problems survivors childhood cancer report childrens oncology group arch pediatr adolesc med 2007 1618 798 806 5farah mj shera dm savage jh et al childhood poverty specific associations neurocognitive development brain res 2006 11101 166 174 6patel sk lo tty dennis jm bhatia neurocognitive behavioral outcomes latino childhood cancer survivors pediatr blood cancer 2013 6010 1696 1702 7 institute medicine brief report 2003 unequal treatment health care system administrators need know racial ethnic disparities healthcare available httpsiomnationalacademiesorgmediafilesreport20files2003unequaltreatmentconfrontingracialandethnicdisparitiesinhealthcaredisparitiesadmin8pgpdf 8 united states department health human services agency healthcare research quality 2003 cultural linguistic competence available httpwwwahrqgovprofessionalssystemsprimarycareculturalcompetencemcocultcompdefhtml 9dennis jm rosen r patel sk willingness participate parental training intervention reduce neurocognitive late effects among latino parents childhood cancer survivors j cancer educ 2015 301 37 44 10kirchhoff ac krull kr ness kk et al physical mental neurocognitive status employment outcomes childhood cancer survivor study cohort cancer epidemiol biomarkers prev 2011 209 1838 1849 citing literature volume25 issue10special issue equality diversity psychooncologyoctober 2016pages 12461249 referencesrelatedinformation