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Nonfunctioning pituitary macroadenomas : treatment and long-term follow-up

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(1)Nonfunctioning pituitary macroadenomas : treatment and long-term follow-up Dekkers, Olaf Matthijs. Citation Dekkers, O. M. (2006, November 8). Nonfunctioning pituitary macroadenomas : treatment and long-term follow-up. Retrieved from https://hdl.handle.net/1887/4975 Version:. Corrected Publisher’s Version. License:. Licence agreement concerning inclusion of doctoral thesis in the Institutional Repository of the University of Leiden. Downloaded from:. https://hdl.handle.net/1887/4975. Note: To cite this publication please use the final published version (if applicable)..

(2) 1UALITYOFLIFEINTREATEDADULT CRANIOPHARYNGIOMAPATIENTS. /-$EKKERS

(3) .2"IERMASZ

(4) *7!3MIT

(5) ,%'ROOT

(6) &2OELFSEMA

(7) *!2OMIJN

(8) AND!-0EREIRA $EPARTMENTOF%NDOCRINOLOGYAND-ETABOLIC$ISEASES

(9) ,EIDEN5NIVERSITY-EDICAL #ENTER

(10) ,EIDEN

(11) 4HE.ETHERLANDS %UROPEAN*OURNALOF%NDOCRINOLOGY  . $)"15&3.

(12) 46.."3: /BJECTIVE1UALITYOF,IFE1O, HASBECOMEINCREASINGLYIMPORTANTINTHEEVALUATIONOF TREATMENTOFPITUITARYANDHORMONALDISEASES!REDUCED1O,HASBEENREPORTEDINCHILD HOOD ONSET CRANIOPHARYNGIOMA HOWEVER

(13) REPORTS OF 1O, IN ADULT CRANIOPHARYNGIOMA PATIENTSARESCARCE)NTHEPRESENTSTUDY

(14) WEASSESSED1O,INADULTPATIENTSSUCCESSFULLY TREATEDFORCRANIOPHARYNGIOMAINOURCENTRE $ESIGN#ASE CONTROLSTUDY -ETHODS)NTHISSTUDYWEASSESSED1O,INADULTPATIENTSINREMISSIONDURINGLONG TERM FOLLOW UP AFTER TREATMENT FOR CRANIOPHARYNGIOMA &OUR VALIDATED HEALTH RELATED QUESTIONNAIRES (!$3

(15) -&) 

(16) .(0

(17) 3&  WERE USED

(18) COVERING MULTIPLE ASPECTS OF PHYSICAL

(19) PSYCHOLOGICALANDSOCIALFUNCTIONING0ATIENTOUTCOMESWERECOMPAREDTOCON TROLSN ANDTOAGEADJUSTEDREFERENCEVALUESDERIVEDFROMLITERATURE 2ESULTS'ENERALFATIGUE

(20) PHYSICALFATIGUE

(21) ENERGY

(22) PHYSICALCONDITIONANDPHYSICALMO BILITYWERESIGNIlCANTLYIMPAIRED

(23) COMPAREDTOCONTROLS4HEMAININDEPENDENTPREDIC TORSFORADECREASED1O,WEREVISUALlELDDEFECTSDEPRESSION

(24) TOTAL(!$3SCORE

(25) ACTIVITY

(26) MOTIVATIONANDENERGY

(27) FEMALEGENDERDEPRESSION

(28) MOTIVATIONANDPAIN

(29) AND

(30) TOALESSER $IBQUFS. EXTENT

(31) REPEAT SURGERY ROLE LIMITATIONS DUE TO EMOTIONAL PROBLEMS

(32) AND RADIOTHERAPY. . MENTALFATIGUE  #ONCLUSION!DULTPATIENTSTREATEDFORCRANIOPHARYNGIOMASHOWPERSISTENTIMPAIRMENT IN1UALITYOF,IFE

(33) ESPECIALLYINTHEPHYSICALSUBSCALES.

(34) 2VBMJUZPGMJGFJOUSFBUFEBEVMUDSBOJPQIBSZOHJPNBQBUJFOUT. */530%6$5*0/ #RANIOPHARYNGIOMASAREHISTOLOGICALLYBENIGNBRAINTUMOURSARISINGFROMTHEREMNANTSOF 2ATHKESPOUCH$ESPITETHEIRBENIGNAPPEARANCE

(35) THEIRCLINICALBEHAVIOURISAGGRESSIVE

(36) CAUSINGSERIOUSMORBIDITYBYDAMAGINGTHEOPTICCHIASM

(37) THEPITUITARY

(38) ANDHYPOTHALAMIC AREA#URRENTLY

(39) CRANIOPHARYNGIOMAISTREATEDPRIMARILYBYTRANSSPHENOIDALORTRANSCRANIAL SURGERY

(40) WHEREASPOST SURGICALRADIOTHERAPYISNOTROUTINELYAPPLIEDINALLPATIENTS  2ECURRENTDISEASEISTREATEDBYREPEATSURGERYANDORRADIOTHERAPY )N ADULTS

(41) TREATMENT OF CRANIOPHARYNGIOMA IS ASSOCIATED WITH EXCESSIVE MULTI SYSTEM MORBIDITY AND INCREASED MORTALITY DURING LONG TERM FOLLOW UP DESPITE A HIGH CURE RATE   4HEREISAHIGHINCIDENCEOFPITUITARYINSUFlCIENCIES

(42) ANDVISUALlELDDEFECTSMAY PERSIST IN SOME PATIENTS    &INALLY

(43) THERE IS A HIGH INCIDENCE OF CARDIOVASCULAR RISK FACTORSINTHESEPATIENTS  0ITUITARY DISEASES IN GENERAL ARE ASSOCIATED WITH DECREASED QUALITY OF LIFE 1O, AND COGNITIVEDYSFUNCTION

(44) DESPITEOPTIMALREPLACEMENTSTRATEGIESFORPITUITARYINSUFlCIENCY

(45) ANDLONG TERMCUREOFHORMONEEXCESSSYNDROMESSUCHAS#USHINGSDISEASEANDACRO MEGALY  (YPOPITUITARISMANDRADIOTHERAPYAREIMPORTANTFACTORSFORIMPAIRED1O, 2EDUCED 1O, HAS BEEN REPORTED IN CHILDHOOD ONSET CRANIOPHARYNGIOMA    4O OURKNOWLEDGE

(46) 1O,INADULTCRANIOPHARYNGIOMAPATIENTSHASBEENREPORTEDINONLYONE STUDY )NTHISSTUDY

(47) 1O,WASMARKEDLYREDUCED

(48) ASASSESSEDBYTWOQUESTIONNAIRES .(0 AND 1O, !'($!

(49) THE LATTER BEING A DISEASE SPECIlC QUESTIONNAIRE

(50) DESIGNED TO ASSESSPHYSICALANDPSYCHOLOGICALDISCOMFORTINADULTGROWTHHORMONEDElCIENCY'IVEN THEHIGHPREVALENCEOFASSOCIATEDMORBIDITYFOUNDINOURADULTCRANIOPHARYNGIOMAPA TIENTS

(51) WEWANTEDTOEXTENDTHESEOBSERVATIONSBYASSESSMENTOF1O,INMOREDETAIL )NTHEPRESENTSTUDYWEASSESSED1O,INADULTPATIENTSSUCCESSFULLYTREATEDFORCRANIO PHARYNGIOMAINOURCENTRE7EEVALUATEDPHYSICAL

(52) PSYCHOLOGICAL

(53) ANDSOCIALASPECTSOF 1O,INPATIENTSAFTERLONG TERMCURE

(54) USINGFOURVALIDATED

(55) HEALTH RELATED1O, QUESTION NAIRES0ATIENTOUTCOMESWERECOMPAREDWITHOWNCONTROLVALUESASWELLASTOAGE AD JUSTEDREFERENCEVALUESDERIVEDFROMLITERATURE. 1"5*&/54"/%.&5)0%4. 1SPUPDPM &ORTY THREE PATIENTS TREATED AND CURED FOR CRANIOPHARYNGIOMA

(56) FOLLOWED IN OUR CENTRE FROMTO

(57) WEREIDENTIlED&OUR1O, QUESTIONNAIRESWERESENTTOTHEIRHOMES 4HEY WERE ASKED TO PARTICIPATE AND TO COMPLETE

(58) AND RETURN THE QUESTIONNAIRES IN A PREPAIDENVELOPE.ON RESPONDERSRECEIVEDAREMINDERLETTER4HEREAFTER

(59) THEYWERECON TACTED ONCE BY TELEPHONE AND ENCOURAGED TO COMPLETE AND RETURN THE QUESTIONNAIRES. .

(60) 0ATIENTSWEREALSOASKEDTOPROVIDEACONTROLPERSONWITHCOMPARABLEAGEANDSEXFOR EXAMPLEARELATIVEnNOTTHEPARTNERn

(61) FRIENDORNEIGHBOUR INORDERTOCOMPOSEACONTROL POPULATIONWITHSIMILARSOCIO ECONOMICSTATUSDERIVEDFROMTHESAMEGEOGRAPHICALAREA )NADDITIONTOTHISCONTROLGROUP

(62) WEUSEDLITERATUREREFERENCEDATAFROMHEALTHYSAMPLES OFTHE$UTCHANDWEST%UROPEANPOPULATIONFROMSTUDIESREPORTINGNORMALAGE ADJUSTED VALUES  4HESEDATAAREBASEDONLARGERSTUDYPOPULATIONSTHANOUROWNCONTROLS ANDARETHEREFORENOTAFFECTEDBYAPOTENTIALPOSITIVESELECTIONBYTHEPATIENTS 4HEMEDICALETHICSCOMMITTEEOFTHE,EIDEN5NIVERSITY-EDICAL#ENTREAPPROVEDTHE STUDYPROTOCOL. 1BUJFOUTBOEDPOUSPMT 5BCMF. 4HIRTY THREEOF PATIENTSRETURNEDTHEQUESTIONNAIRES

(63) FOUROFWHOMPREFERREDNOT TOPARTICIPATE4HUS

(64) COMPLETEDQUESTIONNAIRESWERERECEIVED4HESTUDYPOPULATIONOF PATIENTSMALES HADAMEANAGEWAS¢YEARSRANGE YR !LLPATIENTS WEREPRIMARILYTREATEDBYSURGERY.INEPATIENTSRECEIVEDRADIOTHERAPY

(65) FOUROFWHOMFOR RECURRENCE3EVENPATIENTSHADREPEATSURGERY-EANFOLLOW UPAFTERPRIMARYSURGERYWAS ¢YEARSANDALLPATIENTSWERECUREDOFDISEASE(YPOPITUITARISMWASPRESENTIN $IBQUFS. OFCASES.OSIGNIlCANTDIFFERENCESINAGE

(66) GENDERANDTUMOURCHARACTERISTICSWERE. . FOUNDBETWEENTHESTUDYPOPULATIONANDTHEPATIENTSWHODIDNOTRETURNTHEQUESTION NAIRES 4WENTY lVE CONTROLS RETURNED COMPLETED QUESTIONNAIRES 4HE CONTROL GROUP WAS EX TENDEDBYCONTROLSDERIVEDFROMOTHERSTUDIESPERFORMEDATOURCENTRE

(67) WHOHADBEEN SIMILARLYAPPROACHED 4HEREFORE

(68) THETOTALCONTROLGROUPCONSISTEDOFCONTROLS FEMALES

(69) MALES

(70) WITHAMEANAGEOF¢YR.OSIGNIlCANTDIFFERENCESIN 1O,MEASURESWEREPRESENTBETWEENTHETHREECONTROLGROUPS

(71) JUSTIFYINGTHEIRCOMBINED USE!GEANDGENDERWERENOTSIGNIlCANTLYDIFFERENTFROMTHESTUDIEDCRANIOPHARYNGIOMA PATIENTS. 4UVEZQBSBNFUFST 0RIMARYSTUDY PARAMETERSWERETHERESULTSOFFOURHEALTH RELATED1O,QUESTIONNAIRES4HE RESULTSWERELINKEDTOPATIENTCHARACTERISTICSAGEANDSEX

(72) APPLIEDTREATMENTSSURGERY

(73) RADIOTHERAPYANDMULTIPLESURGICALPROCEDURES

(74) PRESENCEOFHYPOPITUITARISMANDVISUAL IMPAIRMENTS(YPOPITUITARISMWASDElNEDASONEORMOREPITUITARYHORMONEDElCIEN CIES. 2VFTUJPOOBJSFT (!$3(OSPITAL!NXIETYAND$EPRESSION3CALE 4HE(!$3CONSISTSOFITEMSPER TAININGTOANXIETYANDDEPRESSION%ACHITEMISMEASUREDONA POINTSCALE4HERANGE OFSCORESFORTHEANXIETYANDDEPRESSIONSUBSCALEIS FORTHETOTALSCORE !HIGH.

(75) 2VBMJUZPGMJGFJOUSFBUFEBEVMUDSBOJPQIBSZOHJPNBQBUJFOUT. SCORE POINTS TO MORE SEVERE ANXIETY AND DEPRESSION   !GE RELATED $UTCH REFERENCE VALUESOFTHEGENERALPOPULATIONWEREDERIVEDFROMTHESTUDYOF3PINHOVENETAL  -&)  -ULTIDIMENSIONAL &ATIGUE )NDEX 4HE -&)  CONTAINS  STATEMENTS TO ASSESSFATIGUE &IVEDIFFERENTDIMENSIONSOFFATIGUEFOURITEMSEACH ARECALCULATED FROMTHESESTATEMENTS GENERALFATIGUE

(76)  PHYSICALFATIGUE

(77)  REDUCEDACTIVITY

(78)  RE DUCEDMOTIVATIONAND MENTALFATIGUE%VERYSTATEMENTISMEASUREDONA POINTSCALE SCORESRANGEFROMTO(IGHERSCORESINDICATEHIGHEREXPERIENCEDFATIGUE!GE RELATED $UTCHREFERENCEVALUESWEREDERIVEDFROM3METSETAL  .(0 .OTTINGHAM (EALTH 0ROlLE 4HE .(0 IS FREQUENTLY USED IN PATIENTS WITH PITUITARYDISEASETOASSESSGENERALWELL BEINGAND1O,4HESURVEYCONSISTSOFYESNO QUESTIONS

(79) SUBDIVIDEDINTOTHEFOLLOWINGSCALESASSESSINGIMPAIRMENTS PAINITEMS

(80)  ENERGYLEVELITEMS

(81)  SLEEPITEMS

(82)  EMOTIONALREACTIONSITEMS

(83)  SOCIAL ISOLATION

(84)  ITEMS

(85) AND  DISABILITYFUNCTIONING

(86) IE PHYSICAL ABILITY  ITEMS   3UBSCALESCORESARECALCULATEDASAWEIGHTEDMEANOFTHEASSOCIATEDITEMSANDAREEX PRESSEDASAVALUEBETWEENAND4HETOTALSCOREISTHEMEANOFTHESUBSCALES (IGHER SCORES ARE RELATED TO WORSE 1O, !GE RELATED WEST %UROPEAN REFERENCE VALUES WEREDERIVEDFROMTHESTUDYFROM(INZETAL  3&  3HORT &ORM  4HE 3&  QUESTIONNAIRE COMPRISES  ITEMS AND RECORDS GENERAL WELL BEING DURING THE PREVIOUS  DAYS   4HE ITEMS ARE FORMULATED AS STATEMENTSORQUESTIONSTOASSESSEIGHTHEALTHCONCEPTS PHYSICALFUNCTIONING

(87)  SOCIAL FUNCTIONING

(88)  LIMITATIONSINUSUALROLEACTIVITIESBECAUSEOFPHYSICALHEALTHPROBLEMS

(89)  PAIN

(90)  GENERALMENTALHEALTHPSYCHOLOGICALDISTRESSANDWELL BEING

(91)  LIMITATIONSIN USUALROLEACTIVITIESBECAUSEOFEMOTIONALPROBLEMS

(92)  VITALITYENERGYANDFATIGUE

(93) AND  GENERALHEALTHPERCEPTIONSANDCHANGEINHEALTH"ECAUSETHE(!$3ANDTHE-&)  AREMORESPECIlCQUESTIONNAIRESFORMENTALHEALTHANDFATIGUE

(94) THEVITALITYANDGENERAL MENTAL HEALTH ITEMS WERE LEFT OUT IN THIS EVALUATION 3CORES ARE EXPRESSED ON A   SCALE(IGHERSCORESAREASSOCIATEDWITHBETTER1O,!GE RELATEDWEST %UROPEANREFERENCE VALUESWEREDERIVEDFROMTHE$UTCHPUBLICATIONSOF6AN:EEETAL . 4UBUJTUJDT 3033FOR7INDOWSVERSION3033)NC

(95) #HICAGO

(96) ), WASUSEDTOPERFORMDATAANALY SIS $ATA ARE EXPRESSED AS MEAN ¢ 3$ UNLESS OTHERWISE MENTIONED 7E USED UNPAIRED 4 TESTSTOCOMPAREPATIENTANDCONTROLDATA5SINGLINEARREGRESSIONANALYSIS

(97) WEASSESSED INDEPENDENTVARIABLESTHATAFFECTQUALITYOFLIFE$IFFERENCESWERECONSIDEREDSTATISTICALLY SIGNIlCANTATPORLESS. .

(98) 4ABLE#HARACTERISTICSOFTHECRANIOPHARYNGIOMAPATIENTSANDCONTROLS. "HF ZFBST. .BMF'FNBMF "HFBUEJBHOPTJT ZFBST. $IJMEIPPEPOTFU 3BEJPUIFSBQZ 3FQFBUTVSHFSZ 1FSTJTUFOUWJTVBMmFMEEFGFDUT *OUBDUQJUVJUBSZGVODUJPO 4JOHMFQJUVJUBSZEFmDJFODZ .VMUJQMFQJUVJUBSZEFmDJFODJFT 1BOIZQPQJUVJUBSJTN . $SBOJPQIBSZOHJPNBQBUJFOUT O. $POUSPMT O. œ  (  .  .  .  .  .   .  . œ 1/4.  1/4. .3DENOTESNOTSIGNIlCANT. $ElNEDASPITUITARYDElCIENCYINMORETHANAXIS. $ElNEDASPITUITARYDElCIENCYINALLFOURAXES. 3&46-54. 1BUJFOUDIBSBDUFSJTUJDT 5BCMFBOE'JHVSF. $IBQUFS. #LINICALCHARACTERISTICSAREDETAILEDIN4ABLE0RIMARYSURGERYWASPERFORMEDINALL. . PATIENTS .INE  PATIENTS RECEIVED RADIOTHERAPY AFTER PRIMARY SURGERY

(99) AND SEVEN PATIENTS NEEDEDMORETHANONEOPERATION4HEDIFFERENTTREATMENTMODALITIESARE SUMMARIZEDIN&IGURE!TTHETIMEOFEVALUATIONINTWOPATIENTSPITUITARYFUNCTIONWAS INTACT4HESETWOPATIENTSWEREBOTHREOPERATEDBECAUSEOFTUMORREGROWTHANDSUFFERED BOTHFROMVISUALlELDDEFECTS&IVE PATIENTSHADPITUITARYDElCIENCYINOFAXES )NTHEMAJORITYOFPATIENTS

(100) PANHYPOPITUITARISMWASPRESENT4WELVE PATIENTS HADPERSISTENTVISUALIMPAIRMENTS. &IGURE0ATIENTGROUPS

(101) STRATIlEDACCORDINGTODIFFERENTTREATMENTMODALITIES. ,QLWLDOVXUJLFDOWUHDWPHQW 7UDQVFUDQLDOO\1  7UDQVVSKHQRLGDOO\1 . 2QHVXUJLFDO SURFHGXUHQR57 1 . 57 3URSK\ODFWLF 1  )RUUHFXUUHQFH 1 . 57GHQRWHVUDGLRWKHUDS\. 5HSHDWVXUJHU\ 1  )RUUHFXUUHQFH 1 . 5HSHDWVXUJHU\ IROORZHGE\57 1 .

(102) 2VBMJUZPGMJGFJOUSFBUFEBEVMUDSBOJPQIBSZOHJPNBQBUJFOUT. 2VBMJUZPG-JGFJODSBOJPQIBSZOHJPNBQBUJFOUTBOEDPOUSPMT 5BCMF. #OMPAREDTOTHECONTROLSANDTHEAGE ADJUSTEDREFERENCEVALUES

(103) THECRANIOPHARYN GIOMAPATIENTSHADREDUCED1O,INEVERYQUESTIONNAIRE

(104) EXCEPTFORTHE(!$3!CCORDING TOTHE(!$3THEREWASNOSIGNIlCANTDIFFERENCEBETWEENPATIENTSANDCONTROLSINITEMS CONCERNINGANXIETYANDDEPRESSION!LLSUBSCALESOFFATIGUEASSESSEDBYTHE-&) WERE AFFECTED

(105) ESPECIALLYGENERALANDPHYSICALFATIGUE2EDUCTIONINACTIVITYANDMOTIVATIONDID NOTREACHSTATISTICALSIGNIlCANCEWHENCOMPAREDWITHTHEAGE ADJUSTEDREFERENCEVALUES 4HESCORESOFTHEPATIENTSONTHE.(0POINTEDTOREDUCEDENERGYANDPHYSICALMOBILITY 3LEEP

(106) EMOTIONALREACTIONANDSOCIALISOLATIONSCORESWERENOTSIGNIlCANTLYDIFFERENTFROM THE CONTROLS (EALTH PERCEPTION

(107) AS ASSESSED BY THE 3& 

(108) WAS SIGNIlCANTLY AFFECTED IN CRANIOPHARYNGIOMAPATIENTS-OREOVER

(109) PHYSICALANDSOCIALFUNCTIONINGWASREDUCED

(110) AS COMPAREDWITHOWNCONTROLS. 'BDUPSTBõFDUJOH2VBMJUZPG-JGFJODSBOJPQIBSZOHJPNBQBUJFOUT #HILDHOOD VERSUS ADULT ONSET CRANIOPHARYNGIOMA !DULT ONSET CRANIOPHARYNGIOMA PA TIENTSPERFORMEDWORSEONTHEDEPRESSIONSCORE(!$3

(111) 0 THANCHILDHOOD ONSET PATIENTS 'ENDER#OMPAREDWITHMALES

(112) FEMALESREPORTEDADECREASED1O,FORSEVERALENERGY RELATEDITEMS

(113) SUCHASGENERALFATIGUE-&) 

(114) 0

(115) REDUCEDMOTIVATION-&) 

(116) 0  ANDENERGY.(0

(117) 0

(118) ANDALSOFORPAIN.(0

(119) 0

(120) SOCIALFUNCTIONING 3& 

(121) 0 ANDROLELIMITATIONSDUETOPHYSICALPROBLEMS3& 

(122) 0  !GE9OUNGERPATIENTSWEREMOREAFFECTEDONTHEFOLLOWINGSUBSCALESSOCIALISOLATION .(0

(123) 0 ANDSOCIALFUNCTIONING3& 

(124) 0 .OAGE RELATEDDIFFERENCESWERE FOUNDONITEMSCONCERNINGENERGYANDPHYSICALFUNCTIONING 2ADIOTHERAPY /NLY MENTAL FATIGUE WAS SIGNIlCANTLY AFFECTED IN PATIENTS TREATED BY RADIOTHERAPY-&) 

(125) 0  2EPEATSURGERY0ATIENTSWHOUNDERWENTMULTIPLEOPERATIONSPERFORMEDWORSEONGEN ERAL FATIGUE -&) 

(126) 0  

(127) SLEEP .(0

(128) 0   AND HEALTH CHANGE 3& 

(129) 0    6ISUALlELDDEFECTS4HEPRESENCEOFPERSISTENTVISUALlELDDEFECTSSIGNIlCANTLYAFFECTED THEFOLLOWINGITEMSTOTAL(!$3SCORE0

(130) GENERALFATIGUE-&) 

(131) 0

(132) RE DUCEDACTIVITY-&) 

(133) 0

(134) REDUCEDMOTIVATION-&) 

(135) 0

(136) ENERGY.(0

(137) 0 

(138) SOCIALFUNCTIONING3& 

(139) 0 ANDROLELIMITATIONSDUETOPHYSICALPROBLEMS 3& 

(140) 0  -ULTIPLEPITUITARYDElCIENCIESPANHYPOPITUITARISM3CORESFROMPATIENTSWITHINTACTPI TUITARYFUNCTIONN INDICATEDMOREREDUCED1O,INALLSUBSCALESOFTHE(!$3ANDTHE -&) 

(141) AS COMPARED WITH PATIENTS WITH MULTIPLE PITUITARY DElCIENCIESPANHYPOPITUITA RISM(OWEVER

(142) THE3& SCORESFROMPATIENTSWITHMULTIPLEPITUITARYDElCIENCIESPAN. .

(143) $IBQUFS. 4ABLE1UALITYOF,IFE(!$3

(144) -&) 

(145) .(0

(146) 3&  INTREATEDCRANIOPHARYNGIOMAPATIENTSCOMPAREDTO CONTROLSANDAGE ADJUSTEDREFERENCEVALUES. . )"%4 "OYJFUZ %FQSFTTJPO 5PUBM .'* (FOFSBMGBUJHVF 1IZTJDBMGBUJHVF 3FEVDUJPOJOBDUJWJUZ 3FEVDUJPOJONPUJWBUJPO .FOUBM'BUJHVF /)1 &OFSHZ 1BJO &NPUJPOBMSFBDUJPO 4MFFQ 1IZTJDBMBCJMJUZ 4PDJBMJTPMBUJPO /)1UPUBMTDPSF 4' 1IZTJDBMGVODUJPOJOH 4PDJBMGVODUJPOJOH 3PMFMJNJUBUJPOTEVFUPQIZTJDBMQSPCMFNT 3PMFMJNJUBUJPOTEVFUPFNPUJPOBMQSPCMFNT 1BJO (FOFSBMIFBMUIQFSDFQUJPO )FBMUIDIBOHF. $SBOJPQIBSZOHJPNBQBUJFOUT O. $POUSPMT O. QWBMVFB. "HFBEKVTUFE SFGFSFODFWBMVFTC. QWBMVFD. œ œ œ. œ œ œ. OT OT OT. œ œ œ. OT OT OT. œ œ œ œ œ. œ œ œ œ œ.     . œ œ œ œ œ.   OT OT OT. œ œ œ œ œ œ œ. œ œ œ œ œ œ œ.  OT OT OT   . œ œ œ œ œ œ.  OT OT OT  OT. œ œ œ œ œ œ œ. œ œ œ œ œ œ œ.   OT OT OT  OT. œ œ œ œ œ œ œ. E. OT OT OT OT OT  OT. $ATASHOWNARETHEMEAN¢3$ A 0ATIENTSCOMPAREDWITHOWNCONTROLSBYTHEUNPAIREDTWO TAILEDT TEST B $ERIVEDFROMREFERENCES  C 0ATIENTSCOMPAREDWITHLITERATUREREFERENCEDATABYTHEUNPAIREDTWO TAILEDT TEST D .ODATAAVAILABLE. HYPOPITUITARISMWERELOWER

(147) INDICATINGAMOREREDUCED1O,ACCORDINGTOTHE.(0

(148) NO OBVIOUSDIFFERENCEINSCORESWASOBSERVED. -JOFBSSFHSFTTJPO 3TEPWISE

(149) UNI VARIATE

(150) LINEAR REGRESSION ANALYSIS WAS PERFORMED IN A MODEL INCLUDING GENDER

(151) AGE

(152) RADIOTHERAPY

(153) MULTIPLE PITUITARY DElCIENCIESPANHYPOPITUITARISM

(154) MULTIPLE OPERATIONSANDVISUALDEFECTSASINDEPENDENTVARIABLES

(155) ANDTHEQUESTIONNAIREITEMSAS DEPENDENT VARIABLES 6ISUAL lELD DEFECT WAS AN INDEPENDENT PREDICTOR FOR DEPRESSION (!$3

(156) 0

(157) TOTAL(!$3SCORE0

(158) REDUCEDACTIVITY-&) 

(159) 0

(160) RE DUCEDMOTIVATION-&) 

(161) 0 ANDREDUCEDENERGY.(0

(162) 0 &EMALEGENDER WAS AN INDEPENDENT PREDICTOR FOR DEPRESSION (!$3

(163) 0  

(164) REDUCED MOTIVATION.

(165) 2VBMJUZPGMJGFJOUSFBUFEBEVMUDSBOJPQIBSZOHJPNBQBUJFOUT. -&) 

(166) 0 ANDPAIN.(0

(167) 0 2ADIOTHERAPYWASANINDEPENDENTPREDICTOR FORMENTALFATIGUE-&) 

(168) 0 2EPEATSURGERYCORRELATEDTOROLELIMITATIONSDUETO EMOTIONALPROBLEMS3& 

(169) 0 -ULTIPLEPITUITARYDElCIENCIESPANHYPOPITUITARISM WASNOTANINDEPENDENTPREDICTORFORANYOFTHEQUESTIONNAIREITEMS. %*4$644*0/ $ESPITELONG TERMCURE

(170) ADULTCRANIOPHARYNGIOMAPATIENTSEXPERIENCEACONSIDERABLEDE CREASEIN1O,4HEDECREASEIN1O,WASMAINLYMANIFESTEDINTHEPHYSICALITEMSAND

(171) TO ALESSEREXTENT

(172) INPSYCHOSOCIALITEMS1O,INADULTCRANIOPHARYNGIOMAPATIENTSISMOSTLY AFFECTEDBYVISUALIMPAIRMENTSANDTOALESSEREXTENTBYFEMALEGENDER

(173) REPEATSURGERY ANDRADIOTHERAPY 4HE SURVIVAL PROGNOSIS OF PATIENTS TREATED FOR CRANIOPHARYNGIOMA IS FAVOURABLE

(174) WITH REPORTED YEARSURVIVALRATESOFAPPROXIMATELYINBOTHADULTSANDCHILDREN 

(175) ALTHOUGHALOWERSURVIVALRATEHASBEENREPORTED #LINICALSYMPTOMSMAYARISE FROM BOTH TUMOUR MASS EFFECTS AND EFFECTS OF TREATMENT )N ADDITION TO THE WELL REC OGNIZED SIGNS AND SYMPTOMS SECONDARY TO HORMONAL DElCIENCIES AND VISUAL DElCITS

(176) PATIENTSEXPERIENCEPHYSICALANDNEUROPSYCHOLOGICALDElCITS

(177) SUCHASOBESITYANDDElCITS OFHIGHERCORTICALFUNCTION

(178) MEMORY

(179) ANDBEHAVIOUR $ECREASED1O,INCHILDREN TREATED FOR CRANIOPHARYNGIOMA HAS BEEN REPORTED

(180) AFFECTING BOTH PHYSICAL AND PSYCHO SOCIAL HEALTH    4O DATE

(181) STRUCTURED 1O, RESEARCH IN ADULT PATIENTS TREATED FOR CRANIOPHARYNGIOMAHASBEENSTUDIEDINONLYONEREPORT )NTHISSTUDY

(182) USINGTHE.(0 ANDTHE1O, !'($!QUESTIONNAIRES

(183) 1O,WASMARKEDLYREDUCED/URSERIESREPORTSA BROADERASSESSMENTOF1O,

(184) WHICHALSOFOCUSESONFATIGUEANDENERGY-&) 

(185) ASWELL AS ANXIETY AND DEPRESSION (!$3  7E APPLIED FOUR DIFFERENT QUESTIONNAIRES

(186) COVERING MULTIPLEASPECTSOFPHYSICAL

(187) PSYCHOLOGICAL

(188) ASWELLASSOCIALFUNCTIONING )N THE PRESENT STUDY

(189) 1O, IN PATIENTS TREATED FOR CRANIOPHARYNGIOMA PROVED TO BE MORE AFFECTED IN ITEMS CONCERNING PHYSICAL PERFORMANCE THAN IN PSYCHOSOCIAL PERFOR MANCE'ENERALFATIGUE

(190) PHYSICALFATIGUE

(191) ENERGY

(192) PHYSICALCONDITIONANDMOBILITYWERE SIGNIlCANTLY AFFECTED

(193) AS COMPARED WITH CONTROLS 4HIS IS IN AGREEMENT WITH THE HIGH PREVALENCEOFMETABOLICANDVISUALMORBIDITYFOUNDINADULTCRANIOPHARYNGIOMA

(194) WHICH ISATTRIBUTEDTOIRREVERSIBLEHYPOTHALAMIC

(195) ANDOPTICDAMAGE !CCORDINGLY

(196) THEMAIN INDEPENDENTPREDICTORSTOAFFECT1O,WEREFOUNDTOBEVISUALlELDDEFECTS

(197) ANDTOALESSER EXTENT MULTIPLE OPERATIONS

(198) FEMALE GENDER AND RADIOTHERAPY (OWEVER

(199) BECAUSE OF THE RELATIVESMALLNUMBEROFPATIENTS

(200) THERESULTSOFTHELINEARREGRESSIONANALYSISHAVETOBE INTERPRETEDWITHCAUTION-ULTIPLEPITUITARYDElCIENCIESORPANHYPOPITUITARISMWASFOUND INALLEXCEPTTWOCRANIOPHARYNGIOMAPATIENTS"ECAUSEOFTHESMALLNUMBEROFPATIENTS WITHINTACTPITUITARYFUNCTION

(201) THEPOTENTIALCONTRIBUTIONOFHYPOPITUITARISMTOTHEREDUCED. .

(202) 1O,COULDNOTSTATISTICALLYBEASSESSED(YPOPITUITARISMWASFOUNDTOBEANINDEPENDENT PREDICTOROFREDUCED1O,INPATIENTSTREATEDFOR#USHINGSDISEASEANDACROMEGALY

(203) AFFECT INGBOTHPHYSICALANDPSYCHOSOCIALITEMS $ESPITEOPTIMALSUBSTITUTION

(204) ITISLIKELY THATHYPOPITUITARISMINOURPATIENTGROUPALSOCONTRIBUTESTOAREDUCED1O,3& SCORES FROMOURCRANIOPHARYNGIOMAPATIENTS

(205) OFWHOMHADPITUITARYDElCIENCIESINATLEAST THREEAXES

(206) WERECOMPARABLETOSCORESINPATIENTSWITHTWOORTHREEPITUITARYDElCIENCIES AFTERTREATMENTFORNONFUNCTIONINGPITUITARYADENOMAS (OWEVER

(207) COMPAREDTOSCORES FROMTREATED#USHINGPATIENTSWITHHYPOPITUITARISM

(208) OURCRANIOPHARYNGIOMAPATIENTS REPORTBETTER1O,SCORESINALLFOURQUESTIONNAIRES

(209) POINTINGTOASIGNIlCANTCONTRIBUTION OFHYPERCORTISOLISMONREDUCED1O, 4HE PREDISPOSITION FOR FEMALE GENDER AS AN INDEPENDENT RISK FACTOR FOR A DECREASED 1O,INCRANIOPHARYNGIOMAISUNCLEAR

(210) ALTHOUGHITDOESNOTSEEMTOBEADISEASESPECIlC PHENOMENON )N THE GENERAL POPULATION FEMALE GENDER IS ALSO ASSOCIATED WITH HIGHER SCORES ON THE .(0

(211) INDICATING A LOWER 1O,   1O, STUDIES IN NON PITUITARY DISEASES MALIGNANCIES

(212) CORONARYHEARTDISEASE

(213) INmAMMATORYBOWELDISEASE ALSOREPORTDECREASED 1O,INFEMALEPATIENTSASCOMPAREDWITHMALEPATIENTS   4HIRTY THREEOF PATIENTSRETURNEDTHEQUESTIONNAIRES

(214) FOUROFWHOMPREFERRED $IBQUFS. NOTTOPARTICIPATEBECAUSEOFPHYSICALINVALIDATION0ARTICIPATIONOFTHESEPATIENTS

(215) HOW. . EVER

(216) WOULDEVENHAVEWORSENED1O,SCORES

(217) BECAUSETHEYSUFFEREDOFSERIOUSMORBIDITY 4HEUSEOFCONTROLSCHOSENBYTHEPATIENTSMAYHAVEINTRODUCEDABIAS

(218) SINCECONTROLS WITHASUPPOSEDLYGOOD1O,AREMORELIKELYTOBEASKED)NORDERTOOVERCOMETHISPOS SIBLEBIASWEALSOUSEDVALIDATEDREFERENCEDATAFROMLITERATURE  #OMPAREDWITH THOSEAGE ADJUSTEDREFERENCEVALUES

(219) 1O,PARAMETERSWEREAFFECTEDSIGNIlCANTLYINFEWER SUBSCALES

(220) THAN WAS REVEALED BY THE COMPARISON WITH OUR OWN CONTROLS 4HIS SUGGESTS THAT PATIENTS HAVE CHOSEN CONTROLS WITH A SUPPOSED GOOD HEALTH STATUS .ONETHELESS

(221) THECOMPARISONWITHBOTHSOURCESOFCONTROLDATAREVEALEDTHESAMEPATTERN

(222) IEADULT CRANIOPHARYNGIOMAPATIENTSHADSERIOUSLYIMPAIRED1O, )NCONCLUSION

(223) 1O,INADULTCRANIOPHARYNGIOMAPATIENTSISSIGNIlCANTLYREDUCEDCOM PAREDTOAHEALTHYPOPULATION

(224) ESPECIALLYINTHEPHYSICALITEMS4HEMAININDEPENDENT PREDICTOR OF A WORSE 1O, IS VISUAL lELD DEFECTS $ESPITE LONG TERM CURE

(225) TREATMENT OF CRANIOPHARYNGIOMA

(226) WITHTHEAIMTOPREVENTRECURRENCE

(227) DOESNOTNORMALIZE1UALITYOF ,IFE.

(228) 2VBMJUZPGMJGFJOUSFBUFEBEVMUDSBOJPQIBSZOHJPNBQBUJFOUT. 3&'&3&/$&4  +ARAVITAKI.

(229) "RUFANI#

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(259) (OLDEN .

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(281) (OFTIJZER (#

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(285) /RME 3-

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(288) 'ROTZER-!

(289) 2IBI+

(290) 3CHONLE%"OLTSHAUSER%/UTCOMEOFCRANIOPHARYNGIOMA INCHILDRENLONG TERMCOMPLICATIONSANDQUALITYOFLIFE$EVELOPMENTAL-EDICINEAND#HILD .EUROLOGY   -ULLER(,

(291) "RUHNKEN'

(292) %MSER!

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(370)

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