Beta talasemili ergenlerde sosyal, duygusal ve davranışsal güçlüklerin ve ebeveynlerinde psikopatolojinin değerlendirilmesi
Öz
GİRİŞ ve AMAÇ: Bu
çalışmada, beta-globin sentezinde defekt nedeniyle ortaya çıkan azalmış
eritrosit sentezi, anemi ve demir birikimiyle karakterize kalıtsal bir kronik
hastalık olan beta-talasemili ergenlerde sosyal, duygusal ve davranışsal güçlüklerin
ve ebeveynlerinde psikopatoloji yaygınlığının değerlendirilmesi
amaçlanmıştır.
YÖNTEM ve GEREÇLER: 24 Beta-talasemili ergen ve ulaşılabilen ebeveyn hasta
grubu; daha önce fiziksel ve mental hastalık öyküsü bulunmayan, yaş ve cinsiyet
açısından eşleştirilmiş 20 ergen ve ulaşılabilen ebeveyn de kontrol grubu
olarak çalışmaya dahil edilmiştir. Ergenlerde işlevsellik Güçler-Güçlükler
Anketi (GGA) ile değerlendirilmiştir. Ebeveynlerde psikopatolojiyi
değerlendirmek için 90 itemlik bir özbildirim ölçeği olan Ruhsal Belirti Tarama
Listesi 90-R (RBTL 90-R) kullanılmıştır.
BULGULAR: Talasemili ergenlerde GGA yaşıt ilişkileri, emosyonel semptomlar ve
total güçlük subskorları, bu alanlarda soruna işaret eder şekilde anlamlı
olarak daha yüksek bulundu.
Ebeveynlerde, hasta grubunda yüksek çıkan obsesif-kompulsif skalası hariç, tüm
RBTL 90-R alt skorları ve genel semptom indeks skoru her iki grupta normal
sınırlarda olsa da, ailede ikinci bir talasemili çocuk varlığı ile ebeveynlerde
anksiyete düzeyi arasında anlamlı bir ilişki saptandı. Benzer şekilde, çocukta
dismorfi varlığında tüm alt skorlar ve genel semptom indeksi skoru anlamlı
olarak artmaktaydı. Ancak çocukta talasemi komplikasyon(lar)ının varlığı ile
benzer bir korelasyon saptanmadı.
TARTIŞMA ve SONUÇ: Hastalığın kronik ve ölümcül oluşu, tedaviye bağlı zorluklar
ve demir birikimine bağlı ortaya çıkan ikincil rahatsızlıklar nedeniyle hasta
çocukta ve ebeveynlerde psikolojik ve sosyal sorunlar görülebilmektedir. Bu
nedenle tıbbi tedavinin psikososyal destekle kombine edilmesi, çocuk-aileyi bir
bütün olarak ele almak ve olası psikopatolojilerin tanısı ve tedavisi bir
gerekliliktir.
The social, emotional and behavioral difficulties in thalassemic
adolescents and psychopathology in their parents
Aslı Sürer Adanır1, Gülseren
Taşkıran2, Cem Koparan2, Esin Özatalay1
1Akdeniz University School Of Medicine, Department Of Child And
Adolescent Psychiatry, Antalya
2Antalya Training And Research Hospital, Department Of Child And
Adolescent Psychiatry, Antalya
INTRODUCTION: The aim of this study
is to investigate the social, emotional and behavioral difficulties in
adolescents and the prevalance of pyschopatology in parents of adolescents with
βeta-thalassemia, a chronic disease which is a hereditary blood disorder
characterized by reduced or absent beta globin chain synthesis, resulting in
decreased red blood cell production, anemia and subsequent secondary diseases as
a result of iron loading.
METHODS: For this aim, 24 adolescents with Beta-thalassemia and accessible
parent, as the study group and 20 adolescents without any physical or mental
problems and accessible parent, as the control group were recruited. Functionality
of adolescents was assessed with Strengths and Difficulties Questionnaire (SDQ)
and psychopatology in parents was assessed with The Symptom Checklist 90-R (SCL
90-R), a self-report questionnaire consisting of 90 items.
RESULTS: In thalassemic adolescents, SDQ subscores in peer relations, emotional
symptoms and total difficulties were significantly higher, indicating problems
in these areas.
In both groups, all SCL 90-R subscale scores and general symptom index score
were in normal range, but obsessive-compulsive score was statistically higher
in thalassemia group.
There was a significant correlation between the anxiety subscores of parents
and presence of dismorfism in the thalassemic child. The presence of a second
child with thalassemia in the family also correlated with the overall
psychopathology in parents. But contrary to expectation, in the presence of
thalassemia complication(s), no correlation was found.
DISCUSSION AND CONCLUSION: Because of the the chronic and fatal nature of the
disease, difficulties about the treatment and secondary diseases due to the
iron overload, psychological and social problems can be seen in the patients
and their parents. In this respect, it’s a necessity to combine the medical
treatment with psychosocial support, handle the child and the family as a whole
and ensure the identification and treatment of any possible psychopathologies.
Keywords: Chronic
disease, Beta-Thalassemia, adolescent, parents, psychosocial difficulties,
psychopathology
Anahtar Kelimeler
Kronik hastalık Beta-Talasemi ergen ebeveyn psikososyal güçlükler
Kaynakça
- 1. Galanello R, Origa R. Beta-thalassemia. Orphanet J Rare Dis 2010; 5:11. 2. Flint J, Harding RM, Boyce AJ, Clegg JB. The population genetics of the hemoglobinopathies. Bailliere's Clinical Hematology 1998; 11:1–50.
- 3. Cao, A. & Kan, Y.W. The prevention of thalassemia. Cold Spring Harbor Perspectives in Medicine 2013; 1;3(2):a011775. doi: 10.1101/cshperspect.a011775.
- 4. Canatan, D. Thalassemias and Hemoglobinopathies in Turkey. Hemoglobin 2014; 38:305-7. DOI: 10.3109/03630269.2014.938163.
- 5. Canatan D. Ratip S, Kaptan S, Cosan R. Psychosocial burden of beta thalassaemia major in Antalya, South Turkey. Social Science and Medicine 2003; 56, 815-9.
- 6. Aydınok Y, Öztop S, Nişli G, Kavaklı K. Prevalance of beta thalassaemia trait in 1124 students from Aegean region of Turkey. J Trop Pediatr 1997; 43:184-5.
- 7. Bush S, Mandel FS, Giardina PJ. Future orientation and life expectations of adolescents and young adults with thalasseamia major. Ann NY Acad Sci 1998; 850: 361-9.
- 8. Borgna-Pignatti C, Rugolotto S, De Stefano P, Zhao H, Cappellini MD, Del Vecchio GC, Romeo MA ve ark. Survival and complications of thalassaemia. Ann NY Acad Sci 2005; 1054: 40-7.
- 9. Lucarelli G, Isgro A, Sodani P, Gaziev J. Hematopoietic Stem Cell Transplantation in Thalassemia and Sickle Cell Anemia. Cold Spring Harbor Perspectives in Medicine, 2012; 2:(5) a011825. doi: 10.1101/cshperspect.a011825.
- 10. Massaglia P, Caprignano M. Psychology of the thalassaemic patient and his family G. Sirchia, A. Zanella (Eds.), Thalassaemia today the Mediterranean experience Milano: T.O.M.P; 1987. pp. 141-5.
- 11. Politis C. The psychosocial impact of chronic illness. Ann NY Acad Sci 1998; 850: 349-54.
- 12. Pakbaz Z, Fischer R, Treadwell M, Yamashita R, Fung EB, Calvelli L et al. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Ann NY Acad Sci 2005; 1054: 457-61.
- 13. Tsiantis, J. Family reactions and relationships in thalassemia. Annals of the New York Academy of Sciences 1990; 612: 451-61.
- 14. Mikelli, A, Tsiantis, J. Brief report: Depressive symptoms and quality of life in adolescents with beta-thalassemia. Journal of Adolescence 2004; 27: 213-6.
- 15. Hongally C, Benakappa AD, Reena S. Study of behavioral problems in multi-transfused thalassemic children. Indian Journal of Psychiatry 2012; 54(4): 333-6 doi: 10.4103/0019-5545.104819.
- 16. Yengil E, Acipayam C, Kokacya MH, Kurhan F, Oktay G, Ozer,C. Anxiety, depression and quality of life in patients with beta thalassemia major and their caregivers. Int J of Clin Exp Med 2014; 7:2165-72.
- 17. Ratip S, Model B. Psychological and sociological aspects of the thalassaemias. Semin Hematol 1996; 33: 53-65.
- 18. Klein S, Sen A, Rusby J, Ratip S, Modell B. The psychosocial burden of Cooley’s anemia in affected children and their families. Ann NY Acad Sci 1998; 850: 512-3.
- 19. Tsiantis J, Dragonas T, Richardson C, Anastasopoulos D, Masera G, Spinetta J. Psychosocial problems and adjustment of children with beta-thalassemia and their families. Eur Child Adolesc Psychiatry 1996; 5: 193-203.
- 20. Aydin B, Yaprak I, Akarsu D, Okten N, Ulgen M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatr Jpn 1997; 39(3): 354-7.
- 21. Vostanis P. Strengths and Difficulties Questionnaire: Research and clinical applications. Curr Opin Psychiatry 2006; 19: 367-72.
- 22. SDQ, information for resarchers and professionals about the strenghts and difficulties questionnaires (online). 02.10.2017, erişim tarihi. http://sdqinfo.com/
- 23. Derogatis LR, Lipman RS, Covi L. SCL-90: an outpatient psychiatric rating scale--preliminary report. Psychopharmacol Bull. 1973 ; 9:13-28.
- 24. Dağ İ. Belirti Tarama Listesinin üniversiteli öğrenciler için güvenirliği ve geçerliği. Türk Psikiyatri Dergisi 1991; 2: 5-12.
- 25. Angastiniotis M. The adolescent thalassemic. The complicant rebel. Minerva Pediatr 2002; 54: 511-5.
- 26. Öztürk M. Kronik hastalık ve çocuk. Tüzün DU, Hergüner S (editors). Çocuk Hastalıklarında Biyopsikososyal Yaklaşım. First ed. İstanbul: Epsilon yayıncılık; 2007. p: 49-60.
- 27. Goldbeck L, Baving A, Kohen E. Psychosocial aspects of beta-thalassemia: Distress, coping and adherence. Clin Pediatr 2000; 212: 254-9.
- 28. Zahed L, Mourad FH, Alameddine R. Effect of oral iron chelation therapy with deferiprone (L1) on the psychosocial status of thalassaemia patients. Haematologia 2000; 31: 333-9.
- 29. Der Kaloustian VM, Khudr A, Firzli S, Dabbous I. Psychosocial and economic profile of a sample of families with thalassaemic children in Lebanon. J Med Genet 1987; 24: 772-7.
- 30. Rao P, Pradhan PV, Shah H. Psychopathology and coping in parents of chronically ill children. Indian J Pediatr 2004; 71: 695-9.
- 31. Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study. Indian J Pediatr 2015; 82: 1006-11. DOI 10.1007/s12098-015-1762-y.
Öz
Kaynakça
- 1. Galanello R, Origa R. Beta-thalassemia. Orphanet J Rare Dis 2010; 5:11. 2. Flint J, Harding RM, Boyce AJ, Clegg JB. The population genetics of the hemoglobinopathies. Bailliere's Clinical Hematology 1998; 11:1–50.
- 3. Cao, A. & Kan, Y.W. The prevention of thalassemia. Cold Spring Harbor Perspectives in Medicine 2013; 1;3(2):a011775. doi: 10.1101/cshperspect.a011775.
- 4. Canatan, D. Thalassemias and Hemoglobinopathies in Turkey. Hemoglobin 2014; 38:305-7. DOI: 10.3109/03630269.2014.938163.
- 5. Canatan D. Ratip S, Kaptan S, Cosan R. Psychosocial burden of beta thalassaemia major in Antalya, South Turkey. Social Science and Medicine 2003; 56, 815-9.
- 6. Aydınok Y, Öztop S, Nişli G, Kavaklı K. Prevalance of beta thalassaemia trait in 1124 students from Aegean region of Turkey. J Trop Pediatr 1997; 43:184-5.
- 7. Bush S, Mandel FS, Giardina PJ. Future orientation and life expectations of adolescents and young adults with thalasseamia major. Ann NY Acad Sci 1998; 850: 361-9.
- 8. Borgna-Pignatti C, Rugolotto S, De Stefano P, Zhao H, Cappellini MD, Del Vecchio GC, Romeo MA ve ark. Survival and complications of thalassaemia. Ann NY Acad Sci 2005; 1054: 40-7.
- 9. Lucarelli G, Isgro A, Sodani P, Gaziev J. Hematopoietic Stem Cell Transplantation in Thalassemia and Sickle Cell Anemia. Cold Spring Harbor Perspectives in Medicine, 2012; 2:(5) a011825. doi: 10.1101/cshperspect.a011825.
- 10. Massaglia P, Caprignano M. Psychology of the thalassaemic patient and his family G. Sirchia, A. Zanella (Eds.), Thalassaemia today the Mediterranean experience Milano: T.O.M.P; 1987. pp. 141-5.
- 11. Politis C. The psychosocial impact of chronic illness. Ann NY Acad Sci 1998; 850: 349-54.
- 12. Pakbaz Z, Fischer R, Treadwell M, Yamashita R, Fung EB, Calvelli L et al. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Ann NY Acad Sci 2005; 1054: 457-61.
- 13. Tsiantis, J. Family reactions and relationships in thalassemia. Annals of the New York Academy of Sciences 1990; 612: 451-61.
- 14. Mikelli, A, Tsiantis, J. Brief report: Depressive symptoms and quality of life in adolescents with beta-thalassemia. Journal of Adolescence 2004; 27: 213-6.
- 15. Hongally C, Benakappa AD, Reena S. Study of behavioral problems in multi-transfused thalassemic children. Indian Journal of Psychiatry 2012; 54(4): 333-6 doi: 10.4103/0019-5545.104819.
- 16. Yengil E, Acipayam C, Kokacya MH, Kurhan F, Oktay G, Ozer,C. Anxiety, depression and quality of life in patients with beta thalassemia major and their caregivers. Int J of Clin Exp Med 2014; 7:2165-72.
- 17. Ratip S, Model B. Psychological and sociological aspects of the thalassaemias. Semin Hematol 1996; 33: 53-65.
- 18. Klein S, Sen A, Rusby J, Ratip S, Modell B. The psychosocial burden of Cooley’s anemia in affected children and their families. Ann NY Acad Sci 1998; 850: 512-3.
- 19. Tsiantis J, Dragonas T, Richardson C, Anastasopoulos D, Masera G, Spinetta J. Psychosocial problems and adjustment of children with beta-thalassemia and their families. Eur Child Adolesc Psychiatry 1996; 5: 193-203.
- 20. Aydin B, Yaprak I, Akarsu D, Okten N, Ulgen M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatr Jpn 1997; 39(3): 354-7.
- 21. Vostanis P. Strengths and Difficulties Questionnaire: Research and clinical applications. Curr Opin Psychiatry 2006; 19: 367-72.
- 22. SDQ, information for resarchers and professionals about the strenghts and difficulties questionnaires (online). 02.10.2017, erişim tarihi. http://sdqinfo.com/
- 23. Derogatis LR, Lipman RS, Covi L. SCL-90: an outpatient psychiatric rating scale--preliminary report. Psychopharmacol Bull. 1973 ; 9:13-28.
- 24. Dağ İ. Belirti Tarama Listesinin üniversiteli öğrenciler için güvenirliği ve geçerliği. Türk Psikiyatri Dergisi 1991; 2: 5-12.
- 25. Angastiniotis M. The adolescent thalassemic. The complicant rebel. Minerva Pediatr 2002; 54: 511-5.
- 26. Öztürk M. Kronik hastalık ve çocuk. Tüzün DU, Hergüner S (editors). Çocuk Hastalıklarında Biyopsikososyal Yaklaşım. First ed. İstanbul: Epsilon yayıncılık; 2007. p: 49-60.
- 27. Goldbeck L, Baving A, Kohen E. Psychosocial aspects of beta-thalassemia: Distress, coping and adherence. Clin Pediatr 2000; 212: 254-9.
- 28. Zahed L, Mourad FH, Alameddine R. Effect of oral iron chelation therapy with deferiprone (L1) on the psychosocial status of thalassaemia patients. Haematologia 2000; 31: 333-9.
- 29. Der Kaloustian VM, Khudr A, Firzli S, Dabbous I. Psychosocial and economic profile of a sample of families with thalassaemic children in Lebanon. J Med Genet 1987; 24: 772-7.
- 30. Rao P, Pradhan PV, Shah H. Psychopathology and coping in parents of chronically ill children. Indian J Pediatr 2004; 71: 695-9.
- 31. Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study. Indian J Pediatr 2015; 82: 1006-11. DOI 10.1007/s12098-015-1762-y.
Ayrıntılar
| Konular | İç Hastalıkları |
|---|---|
| Bölüm | Araştırma |
| Yazarlar | |
| Yayımlanma Tarihi | 1 Aralık 2017 |
| Yayımlandığı Sayı | Yıl 2017 Cilt: 15 Sayı: 3 |