6 www.sjsr.se PSYCHOLOGICAL PROBLEMS ASSOCIATED WITH THALASSEMIA IN DIYALA PROVINCE, IRAQ * Dr. Kareem Assi Obaid * Pediatrics department, Medical College, Diyala University, Iraq.
1. BACKGROUND Thalassemia is a blood disorder passed down thro!h "amilies #inherited$ in whi%h the bod& ma'es an abnormal "orm o" hemo!lobin. This disorder reslts in e(%essi)e destr%tion o" red blood %ells* and there is no e""e%ti)e treat+ ment. ,atients re-ire li"elon! blood trans"sion* sall& started within 6 to 1.months o" birth o" patient* whi%h on other hand has its own %ompli%ations. /t is a %hroni% disease that mani"ests earl& in li"e that it leads to ps&%holo!i+ %al and so%ial problems "or parents .0e "o%sed on parents to assess the impa%t o" their %hild1s disease. Abstract ac!gro"nd# Beta+thalassemia major is a %hroni% disorder o" blood* ha)in! an e(tensi)e impa%t on the a""e%ted %hild. /t in)ol)es li"elon! therapeti% re!ime* with repeated blood trans"sions. 0ith im+ pro)ed li"e e(pe%tan%&* de to impro)ed medi%al mana!ement ps&%hoso%ial aspe%ts o" thalassemia are !ainin! importan%e. Ob$ectives# Thalassemia is a %hroni% disease that mani"ests earl& in li"e that it leads to ps&%holo!i%al and so%ial problems "or parents .0e "o%sed on parents to assess the impa%t o" their %hild1s disease and to assess the beha)ioral problems in mlti+trans"sed thalassemi% %hildren and ps&%hoso%ial "a%+ tors a""e%tin! them. Material and met%ods# This is a %ross se%tional std& %ond%ted in the Thalassemia Centre o" Al+batool tea%hin! hospital* Di&ala* /ra-. The std& was %arried ot "rom A!st .213 to April .214* parents who "l"illed the in%lsion %riteria were in%lded in the std&. The %riteria were5 a$ established dia!nosis o" thalassemia o" their %hild and the %hild was re!istered with the Thalassemia Centre "or re!lar blood trans"sion* b$ parents who pro)ided %onsent "or the std& &es"lts# The CBC6 total s%ores were hi!h in 3.7 patients* indi%atin! the presen%e o" beha)ioral prob+ lems. 8i!her CBC6 s%ores were "ond in %hildren o" older a!e !rop* those with poor s%hool per"or+ man%e* whose mothers9 ed%ation was more than ei!hth standard* had histor& o" death o" thalassemi% relati)e in "amil&* !reater dration o" dia!nosed illness* poor pre+trans"sion hemo!lobin le)el* and who had lon!er periods o" s%hool absenteeism. Concl"sions# Beha)ioral problems are %ommon in mlti+trans"sed thalassemi% %hildren. :arl& dia!no+ sis and inter)ention o" beha)ioral problems in these %hildren wold ma'e them %ope with thalassemia better. K'()O&D*# '+A,IO&A- P&O-'M*. C+I-D '+A,IO&. C+'CK -I*.. MU-.I/.&A0*1U*'D .+A-A*/ *'MIA. 1&'2U'0. +O*PI.A-I3A.IO0. -O04/.'&MCO*.-( CA&'. The Swedish Journal of Scientific Research (sjsr) ISSN: 2001-9211 Volume 1 Issue 3 August 2014
; www.sjsr.se 0orldwide* thalassemia poses a serios pbli% health problem de to the hi!h pre)alen%e. /t e(tends "rom the <editerranean basin and parts o" A"ri%a* thro!hot the <iddle :ast* the /ndian =b+%ontinent* =oth+:ast Asia* <elanesia and into the ,a%i"i% /slands* with reported rates ran!in! "rom .7 to .>7 ?1@. :a%h &ear* >2*222 to 122*222 %hildren die o" thalassemia major in low and middle in%ome %ontries* while abot ;7 o" the world9s pop+ lation is a %arrier o" a hemo!lobin disorder ?1@. The more se)ere "orms are beta+thalassemia major* whi%h war+ rants re!lar blood trans"sion at an earl& a!e* and thalassemia intermedia whi%h presents later and re-ires less "re-ent trans"sions. The aim o" re!lar blood trans"sions is to eliminate the primar& %ompli%ations o" se)ere thalassemia b& amelioratin! anemia and sppressin! er&thropoiesis. ,atients are sall& trans"sed at an earl& a!e. The %hroni%it& and %ompli%ations o" thalassemia a""e%t the -alit& o" li"e o" )i%tims and parents and %ase ph&si%al* ps&%holo!i%al* and e%onomi% problems ?.@. As there is no de"initi)e %re "or this disease* the majorit& e(+ %lsi)el& depend on blood trans"sions as a treatment option that %reates a brden not onl& on health s&stem bt also on the a""e%ted "amilies* who are )lnerable to* so%ial* and ps&%holo!i%al problems ?3*4@. Aarios Balit& o" 6i"e #BO6$ stdies %ond%ted worldwide on thalassemia indi%ated poor indi%ators "or the s""erers ?>@. /t is e(pe%ted that these %hildren are at hi!h ris' o" de)elopin! beha)ioral and ps&%hoso%ial problems li'e opposition* passi)eness* an(iet&* phobias and depression* whi%h a""e%t their sel"+%on"iden%e and !i)e rise to emotions and tho!hts whi%h ne!ati)el& a""e%t their -alit& o" li"e and %omplian%e to therap&.?6@ <an& o" the thalassemi% %hildren e(perien%e "ear related to intra)enos line insertion and sb%taneos in"sion pmps. Children with thalassemia in the pre+s%hool and laten%& a!e !rops are sall& an(ios and e(%essi)el& dependent on their parents.?;@ The& displa& ps&%hosomati% s&mptoms and are "re-entl& absent "rom s%hool. Thalassemi% %hildren ha)e more o" ne!ati)e sel"+%on%ept when %ompared to their normal %onterparts.?C@. Re!lar blood trans"sions impro)e the o)erall sr)i)al o" mlti+trans"sed %hildren bt despite the pro!ress made in pre)entin! trans"sion+transmitted in"e%tions TT/s$ o)er the last "ew &ears* TT/s %ontine to be a problem in man& parts o" the world #D$. Blood trans"sion is the main ris' "a%tor "or transmittin! )iral hepatitis* parti%larl& in patients with hematolo!i%al diseases #12$.The TT/ problem is dire%tl& proportional to the pre)alen%e o" in"e%tion in the blood donor %ommnit& #11$. ,atients with thalassemia %ommonl& re%ei)e trans"sions and ths* are e(posed to trans"sion+asso%iated in"e%tions .Amon! these in"e%tions* hepatitis B and hepatitis C are the most %ommon #1.$. 8epatitis B is an important in"e%tion in patients with thalassemia and pre)ention b& )a%%ination is ne%essar& .Trans"sional hemosiderosis is a "re-ent %ompli%ation in patients with trans"sion dependent %hroni% diseases s%h as thalassemia and se)ere t&pe o" si%'le %ell diseases. As there are no ph&siolo!i%al me%hanisms to e(%rete the iron %ontained in trans"sed red %ells #1 nit o" blood %ontains appro(imatel& .22 m! o" iron$ the e(%ess o" iron is stored in )arios or!ans. Cardiom&opath& is the most se)ere %ompli%ation %o)erin! more than ;27 o" the %ases o" death o" thalassemi% patients. Altho!h the %rrent re"eren%e standard iron %helator de"ero(amine #DEO$ has been sed %lini%all& "or o)er "or de%ades* its e""e%ti)eness is limited b& a demandin! therapeti% re!imen that leads to poor %omplian%e. Despite poor %omplian%e* be%ase o" the in%on)enien%e o" sb%taneos in"sion* DEO impro)ed %onsiderabl& the sr)i)al and -alit& o" li"e o" patients with thalassemia. De"eriprone sin%e 1DDC and De"erasiro( sin%e .22> were li%ensed "or %lini%al se. The oral %helators ha)e a better %omplian%e be%ase o" oral se* a %omparable e""i%a%& to DEO in iron e(%retion and probabl& a better penetration to m&o%ardial %ells. Considerable in%rease in iron e(%retion was do%mented with %ombination therap& o" DEO and De"eriprone. The proper se o" the three %helators will impro)e the pre)ention and treatment o" iron o)erload* it will red%e %ompli%ations* and impro)e sr)i)al and -alit& o" li"e o" trans"sed patients. ?13*14 .? .. <AT:R/A6= AND <:T8OD= This is a %ross se%tional =td& %ond%ted in the Thalassemia Centre o" Al+batool tea%hin! hospital* Di&ala* /ra-. The std& was %arried ot "rom A!st .213 to April .214. All ,arents who bro!ht their %hildren "or blood trans"sion The Swedish Journal of Scientific Research (sjsr) ISSN: 2001-9211 Volume 1 Issue 3 August 2014
C www.sjsr.se those parents who "l"illed the in%lsion %riteria were in%lded in the std&. The %riteria were5 a$ established dia!+ nosis o" thalassemia o" their %hild and the %hild was re!istered with the Thalassemia %entre "or re!lar blood trans+ "sion* b$ parents who pro)ided %onsent "or the std&.Data was %olle%ted on a -estionnaire %omprisin! .> -es+ tions that was sel"+ desi!ned to assess the ps&%holo!i%al and so%ial problems* #name* date o" dia!nosis* "amil& his+ tor& o" thalassemia* "amil& death* %onsan!init&* no#"re-en%&$ o" trans"sions* )olme o" trans"sions* %helation t&pe* %hroni% illness* no.o" a""e%ted siblin!s* bone marrow aspiration* parents ed%ation* serm "erritin* li)er "n%+ tion test* 8BsAG and Anti 8CA* hepatospelnome!al&* bone %han!es* so%ial problems* "inan%ial problems* wei!ht* hei!ht* OEC* s%hool per"orman%e* beha)ioral problems* dr! rea%tion$. 3. R:=U6T= There was a preponderan%e o" males in parenteral treatment !rop and "emales in oral treatment !rop #Table 1$ and o)erall there were >6 males haematolo!i% amon! the 122 patients in the std&. Apart "rom > indi)idals with b+thalassemia were not re%ei)e %helation therap&* all other patients had oral or parenteral %helation therap& . Dr+ in! the D months had ta'en 122 %ase as sample o" thalassemi% patients in Di&ala %it& to assess the ps&%hoso%ial problems and the reslts in #table 4$ e(plain the so%ial problems and beha)ioral problems more %ommon in paren+ teral treatment while the s%hool absen%e hi!her in oral %helation treatment !rop . /n# table 1 $ the demo!raphi% data o" the patients. Table . e(plain the %omorbidit& asso%iated with both treatment !rop. Table 15 Demo!raphi% data o" the patients parti%ipatin! to the std&.
FFFFFFFFFFFF Oral C%elation 56 case Parenteral C%elation 78 case P val"e 4ender Male 1emale
Table .5 Co+morbidities asso%iated with the disease in both modes o" Chelation. FFFFFFFFFFFF Oral C%elation .; %ase Parenteral C%elation 6C %ase P val"e bone %han!es 1. #2.447$ 4; #2.6D7$ 6i)er D #2.337$ 16 #2..37$ =pleen 13 #2.4C7$ >; #2.C37$ The Swedish Journal of Scientific Research (sjsr) ISSN: 2001-9211 Volume 1 Issue 3 August 2014
D www.sjsr.se 8epatitis#t&pe B*C$ . #2.2;7$ 6 #2.2C7$ Other %hroni% disease . #2.2;7$ 6 #2.2C7$ Bone aspiration 4 #2.147$ 12 #2.147$
Table 35 Disease %hara%teristi%s
FFFFFFFFFFFF Oral C%elation 56 case Parenteral C%elation 78 case P val"e A!e o" onset* At or be"ore 1 st &ear A"ter 1 st &ear
.2 #2.;47$ ; #2..>7$
>2#2.;37$ 1C#2..67$
Ere-en%& o" trans"sion* <onthl& 6ess than month <ore than month
14 #2.>17$ 11 #2.427$ . #2.2;7$
3D #2.>;7$ .D #2.4.7$ 1 #2.217$
Table 4 Oral C%elation 56case Parenteral C%elation 78 case P val"e =o%ial problems 6 #2...7$ .; #2.3D7$ =%hool absen%e 1D #2.;7$ .D #2.4.7$ Einan%ial problems 1. #2.447$ 32 #2.447$ Beha)ioral problems 1. #2..67$ 3. #2.4;7$ 4. D/ =CU==/ON =tdies o)er the past .> &ears ha)e shown that pre)alen%e o" beha)ioral disorders amon! thalassemi% %hildren ran!ed "rom .3 to C27*?1>+16@ and these ps&%holo!i%al distrban%es ad)ersel& a""e%t %omplian%e to treatment in thalassemia.?1;@ /n the present std&* it was "ond that 3.7 o" thalassemi% %hildren had %lini%all& abnormal CBC6 total s%ores. =td& b& &alen et al. in Tr'e& had also re)ealed that older a!e #G1. &ears$* hi!her ed%ation o" mothers and poor s%hool per"orman%e were asso%iated with hi!her ris' o" beha)ioral problems.?1@ /n this std&* 3.7 had beha)ioral problems and 627 had poor s%hool per"orman%e whi%h is similar to the reslts o" a std& in =oth Tr'e&?1C@ where 317 o" thalassemi% %hildren had an(iet& disorders and 627 had poor s%hool per"orman%e. The %hildhood ps&%holo!i%al problems amon! thalassemi% %hildren were similar to that seen in other %hroni% ph&si%al illnesses bt had been neither re%o!niHed nor treated @. 1D ?
The Swedish Journal of Scientific Research (sjsr) ISSN: 2001-9211 Volume 1 Issue 3 August 2014
12 www.sjsr.se
R:E:R:NC:= 1+08O+T/E <eetin!. <ana!ement o" hemo!lobin disorders. Report o" a joint 08OT/ Emeetin!I Ni%osia* C&prs. Gene)a5 08OI .22C. .+. 0eatherall DJ* Cle!! JB5 /nherited hemo!lobin disorders5 an in%reasin! !lobal health problem. Bll 0orld 8ealth Or!an .22 1* ;C5;24K;1.. 3+=hali!ram D* Girimaji =C* Chatr)edi =K5 ,s&%holo!i%al problems an -alit& o" li"e in %hildren with thalassemia. /ndian J ,ediatr .22; ;45;.;K;32. 4+Band&opadh&a& B* Nandi =* <itra K* <andal ,K* <'hopadh&a& =* Biswas AB5 A %omparati)e std& on per%eptions and pra%ti%es amon! parents o" thalassemi% %hildren attendin! two di""erent instittions. /ndian J Comm <ed .223* .C51.CK13.. >+<i'elli A* Tsiantis J5 Brie" Report5 Depressi)e s&mptoms and -alit& o" li"e in adoles%ents with beta+thalassemia. J Adoles% .224* .;5.13K.16 6+A&din B* Lapra' /* A'ars D* O'ten N* Ul!en <. ,s&%hoso%ial aspe%ts and ps&%hiatri% disorders in%hildren with thalassemia major. A%ta ,ediatr Jpn. 1DD;I3D53>4K;. ?,b<ed@ ;+Khrana A* Kat&al =* <arwaha RK. ,s&%hoso%ial brden in Thalassemia. /ndian J ,ediatr. .226I;35C;;KC2. ?,b+ <ed@ C+ <oorjani JD* /ssa% C. Neroti% mani"estations in adoles%ents with thalassemia major. /ndian J ,ediatr. .226I;35623K;. ?,b<ed@ D+6opeH 6* 6opeH ,* Ara!o A* Rodri!eH /* 6opeH J* 6ima :* et al. Ris' "a%tors "or hepatitis B and C in mlti+trans"sed patients in Ur!a&. J Clin Airol. .22>I34 #=ppl .$5=6D+;4. 12+:l+RaHi'& <=* :l+8awar& <* :l+Koo"& N* O'asha =* Kotb <* =alama K et al. 8epatitis C )irs in"e%tion in :!&ptian %hildren5 sin!le %entre e(perien%e. J Airal 8epat. .224I11#>$54;1+6. 11+Jain R* Jose B* Coshi% ,* A!arwal R* Deorari AK. Blood and blood %omponent therap& in neonates. /ndian J ,ediatr. .22CI;>#>$54CD+D>. 1.+Eeld J* 6ee JL* 6o%arnini =. New tar!ets and possible new therapeti% approa%hes in the %hemotherap& o" %hroni% hepatitis B. 8epatolo!&. .223I3C#3$5>4>+>3. 13+ <odell B. Total mana!ement o" thalassemia. Ar%h Dis Child. 1D;;I>.54CDK>22. ?,<C "ree arti%le@ ?,b<ed@ 14+<odell B* Berdo'as A. The Clini%al Approa%h to Thalassemia. 6ondon5 Grne M =trattonI 1DC4 1>+ =herman <* Ko%h D* Giardina ,* =ei!el ,* =ie!el R* =hapiro T. Thalassemi% %hildren9s nderstadin! o" illness5 A std& o" %o!niti)e and emotional "a%tors. Anns N L A%ad =%i. 1DC>I44>53.;K36 16+ ,radhan ,A* =hah 8* Rao ,* Ashtr'ar D* Ghasias ,. ,s&%hopatholo!& and sel" esteem in %hroni% illness. /ndian J ,ediatr. .223I;2513>KC. ?,b<ed The Swedish Journal of Scientific Research (sjsr) ISSN: 2001-9211 Volume 1 Issue 3 August 2014
11 www.sjsr.se 1;+ Beratis =. ,s&%hoso%ial stats in preadoles%ent %hildren with B thalassemia. J ,s&%hosom Res. 1DD3I3;5.;1KD. ?,b<ed 1C+ Canatan D* Ratip =* Kaptan =* Cosan R. ,s&%hoso%ial brden o" beta+Thalassemia major in Antal&a* =oth Tr+ 'e&. =o% =%i <ed. .223I>65C1>KD. ?,b<ed 1D+ =hali!ram D* Girimaji =C* Chatr)edi =K. ,s&%holo!i%al problems and -alit& o" li"e in %hildren with Thalasse+ mia. /ndian J pediatr. .22;I;45;.;K32. ?,b<ed@.
Address :or correspondence# Author: Dr. Kareem Assi Obaid . Pediatrics department, Medical College, Diyala Univer- sity, Iraq. E-mail: karimalhamdany@yahoo.com
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