Blue Team Final Draft

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    Amber Nolen, Chase Hayden, Halee Baker, Kim Vu

    NRS-434V Health Assessment

    Grand Canyon ni!ersity

    "ebruary #$, %'

    CYSTIC FIBROSIS

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    (resent and dis)uss Cysti) "ibrosis

    (ro!ide an o!er!ie* o+ )hildhood and adult im a)t on li+e

    is)uss its im a)t on the health)are industry in)ludin. nursin. ra)ti)e

    (ro!ide resour)es and in+ormation +or treatment lans

    Objectives

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    C" is the most )ommon +atal heredity disease in the /S/# in %,0&& )hildren in Ameri)a are born *ith C"Sym toms )an be sho*n on di++erent le!els +or ea)h erson# in %3 Ameri)ans are )arriers +or the C" .ene and don1t kno*Currently one hal+ the eo le *ith C" li!e to be 3& years oldHundreds o+ alleles )an )ause C", so not one .eneti) test )an dia.nosis C"

    Quick Facts

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    Clinical Description & Definition

    Geneti), li+e-threatenin. disease 2t is an inherited Autosomal re)essi!e trait

    2n+e)tions )aused by thi)k mu)us in many di++erent or.ansC" a++e)ts )ells that )reate mu)us it )auses .rossly thi)k mu)us instead othin, *hi)h )lo.s u )ertain tubes thus )reatin. res iratory and other issue

    eads to res iratory +ailureorothy Anderson ublished +irst in+ormation in # 3$

    5++e)ts on )hildren6 intense thera y on.oin., lon.-term antibioti)demandin. hysi)ally

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    E planation of I!pact

    (eo le are li!in. lon.er *ith Cysti) "ibrosis be)ause o+ ne* +indin.s Can adults )ontra)t C"7 8his li+e-threatenin. disease a++e)ts adults in many *ays Cysti) "ibrosis is e9tremely )ostly to treat Nursin. atients *ith Cysti) "ibrosis is ta9in.

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    "ealt# $roble!s %it# De!o rap#ics & "ealt# Statistics

    2n %% %$, &4 eo le dia.nosed

    4: Cau)asian# in %,0&&-3,0&& dia.nosed

    4/0: A+ri)an-Ameri)an# in #;,&&& dia.nosed

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    i++erent re.ime and diet may lead to bullyin.5motionally hard to handle>ood s*in.s

    a)k o+ )ontrol o!er li+e>ay )ause an9iety2nse)urities and de ression may o))ur

    ?ther +eelin.s that may ariseCon)ern, resentment, +ear, .uilt, an.er, *orry

    'ental and Emotional Impacts

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    Children +eel hysi)ally di++erent than eersSmaller and thinner (uberty delayed by u to t*o yearsBody ima.e inse)urities

    5++e)ts multi le or.ansSinus and lun.s(an)reas and .astrointestinal tra)t

    i!er Bladder and kidney>us)le and bone

    $#(sical I!pacts

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    (eo le *ith C" )an en@oy a normal se9 li+eelay in uberty and se9ual hormones

    (hysi)al +eatures and inse)uritiesRestri)tions

    Re rodu)ti!e system e++e)ts>ale"emale"ertility

    Se ual Effects

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    Costs(ra)ti)al

    ork related?ther

    Health insuran)e(ri!ate>edi)aid>edi)areSe)ondary Co!era.e

    Econo!ical) "ealt# Insurance) "ealt# care

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    Substance *buse Susceptabilit(ia.nosis o+ )hroni) illness raises likelihood o+ de ression to bet*een #;: and 0&:e ression in C" atients has been sho*n to in)rease the )han)es o+ substan)e abuse

    Substan)e abuse in C" atients a)tually *orsens de ressi!e sym toms and de)reases ualityC" atients *ho turn to inhaled dru.s +urther )om li)ate their disease and de)rease li+e s anAl)oholi) abuse leads to +urtherin. de ression, intera)ts *ith most C" meds, and inter+eres *labs

    $renatal Care an+ C#il+ BearinCysti) "ibrosis )an make )on)ei!in. a )hild di++i)ultC" ositi!e *omen should )onsult a .eneti)ist, obstetri)ian, and C" s e)ialist rior to )on)ei!iClose monitorin., indi!iduali ed nutrition, and s e)iali ed renatal )are is re uired8here is a %0: )han)e o+ assin. on C" to your )hild i+ you are dia.nosed2ntense and a..ressi!e ostnatal )are is re)ommended +or best out)omes

    Substance *buse & C#il+ Bearin

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    Occupational "a,ar+s5m loyment is sy)holo.i)ally im ortant to e!eryone and .i!es a sense o+ so)ial a))e tan)e5m loyed Cysti) +ibrosis atients demonstrated hi.her uality o+ li+e and lo*ered disease ?!er 4;: o+ C" atients maintain +ull or art-time em loymentStrenuous hysi)al *ork not ossible es e)ially later in disease ro)ess>aintainin. disability status makes @ob attainment !ery di++i)ult

    Copin %it# Stress

    Chroni) illnesses are !ery stress+ul and )an test our )o in. limitsCysti) +ibrosis dia.nosis results in ne* barriers and obsta)les?!er &: o+ Ameri)ans belie!e in .od meanin. s irituality )o in. is )ommon

    ire)t link bet*een ho e, s irituality, and +aith-based treatment adheren)e8he ma@ority o+ atients turn to God +or su ort and are able to maintain ositi!ity in li+

    Occupational "a,ar+s an+ Copin

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    C*RE $-*. FOR CYSTIC FIBROSIS• Nursin. ia.nosis6 2ne++e)ti!e Air*ay Clearan)e related to e9)essi!e se)retions and ine++e)ti!e )ou.h

    • Nursin. 2nter!ention Classi+i)ation6 Air*ay mana.ement• Nursin. ?ut)ome Classi+i)ation6 Res iratory Status6 Air*ay (aten)y/ (atient *ill main

    )lear o en air*ays as e!iden)ed by ability to )ou.h u se)retions, normal breath sounnormal rateDde th o+ res irations

    • ?n.oin. AssessmentD2nter!entions6• Assess air*ay +or aten)y maintainin. air*ay is +irst riority

    • Aus)ultate lun.s +or de)reased, absent, or ad!entitious breath sounds that may indi)ate o• se ulse o9imetry to monitor o9y.en saturation• Assess res irations, notin. uality, rate, de th, and resen)e o+ dys nea on e9ertion• (osition atient in u ri.ht osition to romote lun. e9 ansion and im ro!ed air e9)han

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    Nursin. ia.nosis6 A)ti!ity 2ntoleran)e related to imbalan)e bet*een o9y.en su ly and demand

    Nursin. 2nter!ention Classi+i)ation6 5ner.y >ana.ement Nursin. ?ut)ome Classi+i)ation6 A)ti!ity 8oleran)e6 5ner.y Conser!ation/ (atient *ill bable to tolerate er+orman)e o+ a)ti!ities usin. ener.y )onser!ation te)hni ues

    ?n.oin. AssessmentD2nter!entions6 Assess atient1s le!el o+ hysi)al a)ti!ity and mobility in order to set realisti) .oals Assess and monitor atient1s slee , nutrition, medi)ation and e ui ment needs

    5n)oura.e ade uate rest bet*een a)ti!ities +or ener.y )onser!ation and re)o!ery 5n)oura.e !erbali ation o+ +eelin.s about limitationsE ro!ide emotional su ort 8ea)h ener.y-)onser!ation te)hni ues to redu)e o9y.en )onsum tion 8ea)h ran.e o+ motion and stren.thenin. e9er)ises that romote enduran)e

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    Screenin ) "ealt# $ro!otion & Intervention

    S)reen +or Cysti) "ibrosis in adults6S*ab the inner )heek +or tissue sam le

    S*eat 8est

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    Resources

    CF Legal Information hotline - information about laws that protect people with CysFibrosis CF Patient Assistance Foundation (CFPAF)- help with medical expenses CFF utation Analysis Program ( AP) - free and con!dential genetic testing for p

    with Cystic Fibrosis to help ma"e informed treatment decisions CFF Case anagement # $echnical Assistance - case managers help understan

    na%igate insurance& reimbursement and co%erage issues CFF Ari'ona Chapter - fund raising& support& e%ents and community for Cystic Fib

    (Cystic Fibrosis Foundation& *+)

    http://www.cff.org/LivingWithCF/AssistanceResources/CFLegalHotline/http://www.cff.org/LivingWithCF/AssistanceResources/MAP/http://www.cff.org/UploadedFiles/LivingWithCF/AssistancePrograms/Case-Management.pdfhttp://www.cff.org/chapters/arizona/http://www.cff.org/chapters/arizona/http://www.cff.org/UploadedFiles/LivingWithCF/AssistancePrograms/Case-Management.pdfhttp://www.cff.org/LivingWithCF/AssistanceResources/MAP/http://www.cff.org/LivingWithCF/AssistanceResources/CFLegalHotline/

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    ReferencesBalan)e Gra hi)/ Retrie!ed +rom6 htt 6DD

    b-i/+orbesim./)omD*ork-in- ro.ressD+ilesD%D&;D ork- i+e-Balan)e-Si.n- ost-by-Stuart->iles/@ .

    Cystic Fibrosis is Adulthood, ( * ), Cystic Fibrosis what& exactly. /etrie%ed From0http011www,cystic!brosis,org,u"1about-cf1li%ing-with-cystic-!brosis1cf-in-adulthood

    Cystic Fibrosis 3ata 4etwor" ( * ) Cystic !brosis report0 united states, /etrie%ed from0http011www,cystic!brosisdata,org1

    Cystic Fibrosis Foundation ( * ), 5asics of Insurance, /etrie%ed From0 https011www,c6,org1Li%ing-with-CF14a%igating-Insurance1Choosing-Co%erage15asics-of-Insurance1

    Cystic Fibrosis Foundation ( 7) Cystic !brosis foundation8s statement on healthcare reform,/etrie%ed from0https011www,c6,org14ews14ews-Archi%e1 71Cystic-Fibrosis-Foundation-s-9tatement-on-:ealthare-/eform1

    Cystic Fibrosis $rust ( * ) Cystic !brosis in adulthood, /etrie%ed from0http011www,cystic;!brosis,org,u"1about-cf1li%ing-with-cystic-!brosis1cf-in-adulthood

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    ReferencesFinancial Considerations ( * ), Cystic Fibrosis what& exactly. /etrie%ed From0

    http011www,cystic!brosis,org,u"1about-cf1li%ing-with-cystic-!brosis1!nancial-considerations

    Gaol, /, ood-Baker, R/, Harle, R/, >uller, K/, Hauser, I/, Reid, /

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    ReferencesGuittner& A,& 5ar"er& 3,& 9nell& C,& ?rimley& ,& arciel& H,& Cru'& I, ( ), Pre%alence a

    of 3epression in Cystic Fibrosis, Curr Opin Pulm Med , *+( )0> -> ,

    9aldana& P,& # Pomeran'& , ( * ), Cystic !brosis and the wor"place0 A re%iew of the literature,Work & + ( )& * >-*7D 7p,

    Se9uality F 2ntima)y/