La dimensione psicosociale nella cura della talassemia: una rassegna della letteratura

Titolo Rivista PSICOLOGIA DELLA SALUTE
Autori/Curatori Marco Bani, Francesca Barile, Umberto Mazza
Anno di pubblicazione 2013 Fascicolo 2013/1 Lingua Italiano
Numero pagine 22 P. 5-26 Dimensione file 325 KB
DOI 10.3280/PDS2013-001001
Il DOI è il codice a barre della proprietà intellettuale: per saperne di più clicca qui

Qui sotto puoi vedere in anteprima la prima pagina di questo articolo.

Se questo articolo ti interessa, lo puoi acquistare (e scaricare in formato pdf) seguendo le facili indicazioni per acquistare il download credit. Acquista Download Credits per scaricare questo Articolo in formato PDF

Anteprima articolo

FrancoAngeli è membro della Publishers International Linking Association, Inc (PILA)associazione indipendente e non profit per facilitare (attraverso i servizi tecnologici implementati da CrossRef.org) l’accesso degli studiosi ai contenuti digitali nelle pubblicazioni professionali e scientifiche

La talassemia major è una patologia genetica, che richiede periodiche e costanti trasfusioni di sangue e un trattamento ferrochelante a vita oltre che una presa in carico multidisciplinare. Come ogni patologia cronica, determina un grosso impatto sulla qualità di vita, il benessere psicologico e il contesto familiare dei pazienti. I progressi medici degli ultimi 30 anni hanno permesso un notevole miglioramento delle aspettative di vita di questi pazienti che possono raggiungere l’età adulta, lavorare, avere dei figli a condizione di una costante adesione al trattamento. Alla luce di questi miglioramenti si propone una rassegna dei risultati di ricerca degli ultimi 10 anni, in relazione alle difficoltà psicosociali dei pazienti e dei familiari, alla qualità di vita e alla dimensione psicopatologica dei soggetti con talassemia, per verificare se tali dimensioni si siano anch’esse modificate, anche in relazione ai differenti contesti culturali. I dati emersi mostrano un livello di psicopatologia maggiore rispetto ai soggetti di controllo e una qualità di vita più bassa sia per i soggetti con talassemia sia per i familiari, indicando, pur di fronte ai miglioramenti clinici, la necessità di uno sforzo maggiore verso la progettazione e la diffusione di interventi psicosociali.;

Keywords:Talassemia, psicopatologia, caregiver, coping, qualità di vita

  1. AA. VV. (2003). Guidelines for the Clinical Management of Thalassemia, Thalassemia International Federation
  2. AA. VV. (2007). Guidelines for the Clinical Management of Thalassemia – 2° edition, Thalassemia International Federation
  3. Aydin B., Yaprak I., Akarsu D., Ökten N. and Ülgen M. (1997). Psychosocial aspects and psychiatric disorders in children with thalassemia major. Pediatrics International, 39 (3): 354-357. DOI: 10.1111/j.1442-200X.1997.tb03752.x
  4. Aydinok Y., Erermis S., Bukusoglu N., Yilmaz D. and Solak U. (2005). Psychosocial implications of Thalassemia Major. Pediatrics International, 47 (1): 84-89. DOI: 10.1111/j.1442-200x.2004.02009.x
  5. Aydinok Y., Ulger Z., Nart D., Terzi A., Cetiner N., Ellis G., Zimmermann A. and Manz C. (2007). A randomized controlled 1-year study of daily deferiprone plus twice weekly desferrioxamine compared with daily deferiprone monotherapy in patients with thalassemia major. Haematologica, 92 (12): 1599-1606. DOI: 10.3324/haematol.11414
  6. Ammad S.A., Mubeen S.M., Ul Hassan Shah S.F. and Mansoor S. (2011). Parents’ opinion of quality of life (QOL) in Pakistani thalassaemic children. Journal of Pakistan Medical Association, 61: 470-473
  7. Angastiniotis M. (2002). The adolescent thalassemic. The complicant rebel. Minerva Pediatrica, 54 (6): 511-515.
  8. Anie A.K. (2005). Psychological complications in sickle cell disease. British Journal of Haematology, 129: 723-729. DOI: 10.1111/j.1365-2141.2005.05500.x
  9. Anie K.A. and Green J. (2007). Psychological therapies for sickle cell disease and pain (Cochrane review). Cochrane Database of Systematic Reviews, Issue 3. DOI: 10.1002/14651858.CD001916.pub2
  10. Anie K.A. and Massaglia P. (2001). Psychological therapies for thalassaemia. Cochrane Database of Systematic Reviews, 3. Art. No.: CD002890 (update 2008). DOI: 10.1002/14651858.CD002890
  11. Atkin K. and Ahmad W.I.U. (2000). Family caregiving and chronic illness: How parents cope with a child with sickle cell disorder or thalassaemia major. Health and Social Care in the Community, 8 (1): 57-69. DOI: 10.1046/j.1365-2524.2000.00211.x
  12. Atkin K. and Ahmad W.I.U. (2001). Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder. Social Science & Medicine, 53: 615-626. DOI: 10.1016/S0277-9536(00)00364-6
  13. Aydin B., Yaprak I., Akarsu D., Okten N. and Ulgen M. (1997). Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatrica Japonica, 39 (3): 354-357.
  14. Azarkeivan A., Hajibeigia B., Alavianb S.M., Lankaranic M.M. and Assaric S. (2009). Associates of poor physical and mental health-related quality of life in beta thalassemiamajor/ intermedia. Journal of Research in Medical Sciences, 14 (6): 349-355.
  15. Beratis S. (1993) Psychosocial status in preadolescent children with β-thalassaemia. Journal of Psychosomatic Research, 37: 271-279. DOI: 10.1016/0022-3999(93)90036-F
  16. Bocchetta A. (2005). Heterozygous beta-thalassaemia as a susceptibility factor in mood disorders: excessive prevalence in bipolar patients. Clinical Practice and Epidemiology in Mental Health, 1: 6. DOI: 10.1186/1745-0179-1-6
  17. Bush S., Mandel F.S. and Giardina P.J. (1998). Future Orientation and Life Expectations of Adolescents and Young Adults with Thalassemia Major. Annals New York Academy of Sciences, 850: 361-369. DOI: 10.1111/j.1749-6632.1998.tb10494.x
  18. Cakaloz B., Cakaloz I., Polat A., Inan M. and Kalkan Oguzhanoglu N. (2009). Psychopathology in thalassemia major, Pediatrics International, 51: 825-828. DOI: 10.1111/j.1442-200X.2009.02865.x
  19. Canatan D., Ratip S., Kaptan S. and Cosan R. (2003). Psychosocial burden of s-thalassaemia major in Antalya, south Turkey. Social Science & Medicine, 56 (4): 815-819. DOI: 10.1016/S0277-9536(02)00080-1
  20. Cappellini M.D. and Pattoneri P. (2009). Oral Iron Chelators. Annual Review of Medicine, 60: 25-38. DOI: 10.1146/annurev.med.60.041807.123243
  21. Clarke S.A., Skinner R., Guest J., Darbyshire P., Cooper J., Shah F., Roberts I. and Eiser C. (2009). Health-related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK. Child: care, health and development, 36 (1): 118-122. DOI: 10.1111/j.1365-2214.2009.01043.x
  22. Clemente C., Tsiantis J. and Sadowski H. (2002). Psychopathology in children from families with blood disorders: a cross-national study. European Child & Adolescent Psychiatry, 11 (4): 151-161. DOI: 10.1007/s00787-002-0257-3
  23. Dahlui M., Hishamshah M.I., Rahman A.J.A. and Aljunid S.M. (2009). Quality of life in transfusiondependent thalassaemia patients on desferrioxamine treatment. Singapore Medical Journal, 50 (8): 794-799.
  24. Di Palma A., Vullo C., Zani B. and Facchini A. (1998). Psychosocial integration of adolescents and young adults with thalassemia major. Annals of the New York Academy of Sciences, 850: 355-360. DOI: 10.1111/j.1749-6632.1998.tb10493.x
  25. Gafari Saravi V., Zarghami M., Tirgari A. and Ebrahimi E. (2007). Relationship between thalassemia and depression. Research Journal of Biological Science, 2 (3): 280-284.
  26. Ghanizadeh A., Sirin K. and Hamid A. (2006). Prevalence of psychiatric disorders, depression and suicidal behavior in child and adolescent with thalassemia major. Journal of Pediatric Hematology/Oncology, 28: 781-784. DOI: 10.1097/01.mph.0000243665.79303.9e
  27. Gharaibeh H.F. and Gharaibeh M.K. (2012). Factors influencing health-related quality of life of thalassaemic Jordanian children. Child: care, health and development, 38 (2): 211-218 DOI: 10.1111/j.1365-2214.2011.01224.x
  28. Gharaibeh H., Amarneh B.H. and Zamzam S.Z. (2009). The Psychological Burden of Patients with Beta thalassemia Major in Syria. Pediatrics International, 51 (5): 630-636. DOI: 10.1111/j.1442-200X.2009.02833.x
  29. Hajibeigi B., Azarkeyvan A., Alavian S.M., Lankarani M.M. and Assari S. (2009). Anxiety and depression affects life and sleep quality in adults with beta-thalassemia. Indian Journal of Hematology and Blood Transfusion, 25 (2): 59-65. DOI: 10.1007/s12288-009-0015-5
  30. Kattamis C. (1989). The child with thalassaemia. Bulletin International Paediatric Association, 4: 19-29.
  31. Ismail A. (2010). Measuring the Health Related Quality of Life of Malaysian Children with Thalassaemia: Reliability and Validity of PedsQL 4.0 Generic Score and SF36v2. Journal of Statistical Modeling and Analytics, 1 (1): 1-28.
  32. Ismail A., Campbell M., Ibrahim H. and Jones G. (2006). Health-related quality of life in Malaysian children with thalassaemia. Health and Quality of Life Outcomes, 4: 39. DOI: 10.1186/1477-7525-4-39
  33. Laurice M. (2005). Caring for Adults with Thalassemia in a Pediatric World. Annals of the New York Academy of Sciences, 1054: 266-272. DOI: 10.1196/annals.1345.034
  34. Louthrenoo O., Sittipreechacharn S., Thanarattanakorn P. and Sanguansermsri T. (2002). Psychosocial problems in children with thalassemia and their siblings. Journal of the Medical Association of Thailand, 5: 881-885.
  35. Marvasti V.E., Dastoori P. and Karimi M. (2006). Is b-thalassemia trait a risk factor for developing depression in young adults? Annals of Hematology, 85: 873-874. DOI: 10.1007/s00277-006-0154-9
  36. Masera G., Monguzzi W., Piga A., Massaglia M.P., Vania A., De Pascale A., Magnano C. e Di Palma A. (1996). Raccomandazioni per l’intervento psicosociale nella talassemia. [Recommendations for psychosocial intervention in thalassemia]. Rivista Italiana di Pediatria, 22: 110-112.
  37. Mazzone L., Battaglia L., Andreozzi F., Romeo M.A. and Mazzone D. (2009). Emotional impact in β-thalassaemia major children following cognitive-behavioural family therapy and quality of life of caregiving mothers. Clinical Practice and Epidemiology in Mental Health, 5: 5. DOI: 10.1186/1745-0179-5-5
  38. Mednick L., Yu L., Trachtenberg F., Xu Y., Kleinert D.A., Giardina P.J., Kwiatkowski J.L., Foote D., Thayalasuthan V., Porter J.B., Thompson A.A., Schilling L., Quinn C.T., Neufeld E.J. and Yamashita R. (2010). Symptoms of depression and anxiety in patients with thalassemia: Prevalence and correlates in the thalassemia longitudinal cohort. American Journal of Hematology, 85 (10): 802-805. DOI: 10.1002/ajh.21826.
  39. Messina G., Colombo E., Cassinerio E., Ferri F., Curti R., Altamura C. and Cappellini M.D. (2008). Psychosocial aspects and psychiatric disorders in young adult with thalassemia major. Internal and Emergency Medicine, 3 (4): 339-343. DOI: 10.1007/s11739-008-0166-7
  40. Mikelli A. and Tsiantis J. (2004). Brief report: Depressive symptoms and quality of life in adolescents with b-thalassaemia. Journal of Adolescent Health, 27: 213-216. DOI: 10.1016/j.adolescence.2003.11.011
  41. Monastero R., Monastero G., Ciaccio C., Padovani A. and Camarda R. (2000). Cognitive defcits in beta-thalassemia major. Acta Neurologica Scandinavica, 102: 162-168. DOI: 10.1034/j.1600-0404.2000.102003162.x
  42. Moorjani J.D. and Issac C. (2006). Neurotic Manifestations in Adolescents With Thalassemia Major, Indian journal of pediatrics, 73 (7): 603-607.
  43. Musallam K., Cappellini M.D. and Taher A. (2008). Challenges Associated With Prolonged Survival of patients With Thalassemia: Transitioning From Childhood to Adulthood. Pediatrics, 121 (5): 1426-1429. DOI: 10.1542/peds.2007-1944
  44. Musallam K.M., Khoury B., Abi-Habib R., Bazzi L., Succar J., Halawi R., Hankir A., Koussa S. and Taher A.T. (2011). Health-related quality of life in adults with transfusionindependent thalassaemia intermedia compared to regularly transfused thalassaemia major: new insights. European Journal of Haematology, 87: 73-79. DOI: 10.1111/j.1600-0609.2011.01623.x
  45. Osborne R.H., De Abreu Lourenço R., Dalton A., Houltram J., Dowton D., Joshua D.E., Lindeman R. and Ho P.J. (2007). Quality of Life Related to Oral versus Subcutaneous Iron Chelation: A Time Trade-off Study. Value in Health, 10 (6): 451-456. DOI: 10.1111/j.1524-4733.2007.00200.x
  46. Kuo H.T., Peng C.T. and Tsai M.Y. (2006). Pilot Study on Parental Stress and Behavioral Adjustment to the Thalassemia Major Disease Process in Children Undergoing Iron-Chelation in Western Taiwan. Hematology, 30 (2): 301-309. DOI: 10.1080/03630260600642658
  47. Pakbaz Z., Treadwell M., Kim H.-Y., Trachtenberg F., Parmar N., Kwiatkowski J.L., Cunningham M.J., Martin M., Sweeters N., Neufeld E.J., Giardina P.J., Olivieri N., Yamashita R.C. and Vichinsky E. (2010). Education and employment status of children and adults with thalassemia in North America. Pediatric Blood & Cancer, 55: 678-683. DOI: 10.1002/pbc.22565
  48. Pakbaz Z. (2005). Quality of life in patients with thalassemia intermedia compared to thalassemia major. Annals of the New York Academy of Sciences, 1054: 457-461. DOI: 10.1196/annals.1345.059
  49. Pless I.B. (1984). Symposium on chronic disease in children. Clinical Assessment: Physical and psychological functioning. Pediatric Clinical of North America, 31: 33-35.
  50. Politis C., Di Palma A., Fisfis M., Giasanti A., Richardson S.C., Vullo C. and Masera G. (1990). Social integration of the older thalassaemic patient. Archives of Disease in Childhood, 65 (9): 984-986. DOI: 10.1136/adc.65.9.984
  51. Pradhan P.V., Shah E., Rao P., Ashturkar D. and Ghaisas P. (2003). Psychopathology and Self-esteem in Chronic Illness. Indian Journal of Pediatrics, 70 (2): 135-138. DOI: 10.1007/BF02723739
  52. Rao P., Pradhan P.V. and Shah H. (2004). Psychopathology and Coping in Parents of Chronically Ill Children. Indian Journal of Pediatrics, 71 (8): 695-699. DOI: 10.1007/BF02730656
  53. Ratip S., Skuse D., Porter J., Wonke B., Yardumian A. and Modell B. (1995). Psychosocial and clinical burden of thalassaemia intermedia and its implications for prenatal diagnosis. Archives of Disease in Childhood, 72 (5): 408-412. DOI: 10.1136/adc.72.5.408
  54. Ratip S. and Modell B. (1996) Psychosocial and sociological aspects of the thalassemias. Seminars in Hematology, 33: 53-65
  55. Sobota A., Yamashita R., Xu Y., Trachtenberg F., Kohlbry P., Kleinert D.A., Giardina P.A., Kwiatkowski J.L., Foote D., Thayalasuthan V., Porter J.B., Thompson A.A., Schilling L., Quinn C.T. and Neufeld E.J. (2010). Quality of life in Thalassemia: A comparison of SF-36 results from the Thalassemia longitudinal cohort to reported literature and the US norms. American Journal of Hematology, 86 (1): 92-95. DOI: 10.1002/ajh.21896
  56. Sabry N. and Salama K.H. (2009). Cognitive Abilities, Mood Changes and Adaptive Functioning in Children with β Thalassaemia. Current Psychiatry, 16 (3): 244-254
  57. Sadowski H., Kolvin I., Clemente C., Tsiantis J., Baharaki S., Ba G., Lee C., and Taylor B. (2002). Psychopathology in children from families with blood disorders: a cross national study. European Child and Adolescent Psychiatry, 11 (4): 151-161. DOI: 10.1007/s00787-002-0257-3
  58. Sapountzi-Krepia D., Roupa Z., Gourni M., Mastorakou F., Vojiatzi E., Kouyoumtzi A. and Van Shell S. (2006). A qualitative study on the experiences of mothers caring for their children with thalassemia in Athens, Greece. Journal of Pediatric Nursing, 21: 142-152. DOI: 10.1016/j.pedn.2005.06.017
  59. Shaligram D., Girimaji S.C. and Chaturvedi S.K. (2007). Psychological Problems and Quality of Life in Children with Thalassemia. Indian journal of pediatrics, 74 (8): 727-730
  60. Sharghi A., Karbakhsh M., Nabaei B., Meysamie A. and Farrokhi A. (2006). Depression in mothers of children with thalassemia or blood malignancies: A study from Iran. Clinical Practice of Epidemiology in Mental Health, 2: 27. DOI: 10.1186/1745-0179-2-27
  61. Songul Yalcın S., Durmusoglu-Sendogdu M., Gumruk F., Unal S., Kargıw E. and Tugrul B. (2007). Evaluation of the Children With b-Thalassemia in Terms of Their Self-concept, Behavioral, and Parental Attitudes. Journal of Pediatric Hematology/Oncology, 29: 523- 528. DOI: 10.1097/MPH.0b013e3180f61b56
  62. Surapolchai P., Satayasai W., Sinlapamongkolkul P. and Udomsubpayakul U. (2010). Biopsychosocial Predictors of Health-Related Quality of Life in Children with Thalassemia in Thammasat University Hospital. Journal of Medical Association in Thailand, 93 (7): 65-75.
  63. Thavorncharoensap M., Torcharus K., Nuchprayoon I., Riewpaiboon A., Indaratna K. and Ubol B. (2010) Factors affecting health-related quality of life in Thai children with thalassemia. BMC Blood Disorders, 10: 12-15. DOI: 10.1186/1471-2326-10-1
  64. Tsiantis J. (1990). Family reactions and relationships in Thalassaemia. Annals of the New York Academy of Sciences, 612: 451-61. DOI: 10.1111/j.1749-6632.1990.tb24332.x
  65. Tsiantis J., Dragonas Th., Richardson C., Anastasopoulos D., Masera G. and Spinetta J. (1996). Psychosocial problems and adjustment of children with beta-thalassemia and their families. European Child & Adolescent Psychiatry, 5 (4): 193-203. DOI: 10.1007/BF00538846
  66. van den Tweel X.W., Hatzmann J., Ensink E., van der Lee J.H., Peters M., Fijnvandraat K. and Grootenhuis M. (2008). Quality of life of female caregivers of children with sickle cell disease: a survey. Haematologica, 93 (4): 588-593. DOI: 10.3324/haematol.11610
  67. Vichinsky E., Pakbaz Z., Onyekwere O., Porter J., Swerdlow P., Coates T., Lane P., Files B., Mueller B.U., Coic L., Forni G.L., Fischer R., Marks P., Rofail D., Abetz L. and Baladi J.F. (2008). Patient-Reported Outcomes of Deferasirox versus Deferoxamine in Sickle Cell Disease Patients with Transfusional Hemosiderosis. Acta Haematologica, 119 (3): 133-141. DOI: 10.1159/000125550
  68. Woo R., Giardino P. and Hilpartner M. (1984). A psychosocial needs assessment of patients with homozygous B-thalassaemia. Annals of New York Academy of Science, 445: 316- 322. DOI: 10.1111/j.1749-6632.1985.tb17201.x
  69. Zani B., Di Palma A. and Vullo C. (1995). Psychosocial aspect of chronic illness in adolescents with thalassaemia major. Journal of Adolescente Health, 18: 387-402. DOI: 10.1006/jado.1995.1029

Marco Bani, Francesca Barile, Umberto Mazza, La dimensione psicosociale nella cura della talassemia: una rassegna della letteratura in "PSICOLOGIA DELLA SALUTE" 1/2013, pp 5-26, DOI: 10.3280/PDS2013-001001