Focus
Vivere con la malttia genetica: aspetti psicosociali della beta-talassemia
LIVING WITH A GENETIC DISEASE: PSYCHOSOCIAL ASPECTS OF BETA-THALASSEMIA
C. Vullo, A. Di Palma
Gennaio 2001 - pagg. 26 -29
Abstract
The impact of genetic diseases on the quality of life is not always devastating. In the case of
thalassemia, despite of monthly dependence on transfusion and daily dependence on deferoxamine
and other medical treatments, which are often indispensable, the results in terms
of self-confidence, appreciation for one’s physical aspect, family relationships, trust in the
future, sexual life, decision-making capacity turned out to be comparable or even better
than those recorded for controls.
Classificazione MeSH
Bibliografia
1. Pless IB. Clinical assessment: physical and
psychological functioning. Ped Clin N Am
1984;31:33-45.
2. Orr DP, Weller SC, Satterwhite B, Pless IB. Psychosocial implications of chronic illness in adolescence. J Pediatr 1984;104:152-7.
3. Gortmaker SL, Walker DK, Weitzman M, Sobel AM. Chronic conditions, socioeconomic risks and behavioral problems in children and adolescents. Pediatrics 1990;85: 267-76.
4. Seigel WM, Galden NH, Gough JW, et al. Depression, self esteem and life events in adolescents with chronic diseases. J Adolescent Health 1990;11:501-4.
5. Newacheck PW, McManus MA, Fox AB. Prevalence and impact of chronic illness among adolescents. AJDC 1991;145:1367-73.
6. Pless IB, Power C, Peckham CS. Longterm psychosocial sequelae of chronic physical disorders in childhood. Pediatrics 1993;91:1131-6.
7. Kellerman J, Zeltzer L, Ellenberg L, et al. Psychological effects of illness in adolescence. I. Anxiety, self-esteem, and perception of control. J Pediatr 1980;97:126-31.
8. Zeltzer L, Kellerman J, Ellenberg L, et al. Psychosocial effects of illness in adolescence. II. Impact of illness in adolescents - crucial issues and coping styles. J Pediatr 1980;97: 132-8.
9. Cappelli M, McGrath PJ, Heick CE, et al. Chronic disease and its impact. The adolescent’s perspective. J Adolescent Health Care 1989;10:283-8.
10. Cadman D, Rosenbaum P, Boyle M, Offord DR. Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Pediatrics 1991;87:884-9.
11. Drotar DD, Agle DP, Eck CK, Thompson PA. Psychological response to HIV positivity in hemophilia. Pediatrics 1995;96:1062-9.
12. Wolman C. Resnick MD, Harris LJ, Blum RW. Emotional well-being among adolescents with and without chronic conditions. J Adolescent Health 1994;15:199-204.
13. Wolman C, Basco DE. Factors influencing self-esteem and self consciousness in adolescents with spina bifida. J Adolescent Health 1994;15:543-8.
14. Greenberg HS, Kazak AE, Meadows AT. Psychologic functioning in 8-to16 year-old cancer survivors and their parents. J Pediatr 1989;114:488-93.
15. Weiland SK, Bless IB, Roghmann KJ. Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers. Pediatrics 1992;89: 445-9.
16. Gode RO, Scott Smith M. Effects of chronic disorders on adolescent development: self, amily, friends and school. In: M Scott Smith (ed.).Chronic disorders in adolescence. Boston: John Wright PSG Inc.,1983:31.
17. Suris JC, Parera N, Puig C. Chronic illness and emotional distress in adolescence. J Adolescent Health 1996;19:153-6.
18. Suris JC, Resnick MD, Cassuto N, Blum RWM. Sexual behavior and adolescents with chronic disease and disability. J Adolescent Health 1996;19:124-31.
19. Ratip S, Modell B. Psychological and social aspects of the thalassemia. Seminars in Hematology 1996;33:53-65.
20. Massaglia P, Carpignano M. Psychology of the thalassemia patient and his family. In: Thalassemia Today. The mediterranean experience. Proceedings of the 2nd Mediterranean Meeting. Milano, 1985:28-30.
21. Tsiantis J, Dragonas Th, Richarson D, et al. Psychosocial problems and adjustment of children with beta-thalassemia and their families. European Child & Adolescent Psychiatry 1996;5:193-203.
22. Politis C, Di Palma A, Fisfis M, et al. Social integration of the older thalassemic patient. Arch Dis Childhood 1990;65:984-6.
23. Zani B, Di Palma A, Vullo C. Psychosocial aspects of chronic illness in adolescents with thalassaemia major. J Adolescence 1995;1: 387-402.
24. Di Palma A, Vullo C, Zani B, Facchin A. Psychosocial integration of adolescents and young adults with thalassemia. Ann N Y Acad Sci 1998;850:355-60.
25. Bush S, Mandel FS, Giardina P. Future orientation and life expectations of adolescents and young adults with Thalassemia Major. Ann N Y Acad Sci 1998;850:361-9.
26. Wasserman AL, Thompson EJ, Wilimas J, et al. The psychological status of survivors of childhood/adolescent Hodgkin’s disease. AJDC 1987;141:626-31.
2. Orr DP, Weller SC, Satterwhite B, Pless IB. Psychosocial implications of chronic illness in adolescence. J Pediatr 1984;104:152-7.
3. Gortmaker SL, Walker DK, Weitzman M, Sobel AM. Chronic conditions, socioeconomic risks and behavioral problems in children and adolescents. Pediatrics 1990;85: 267-76.
4. Seigel WM, Galden NH, Gough JW, et al. Depression, self esteem and life events in adolescents with chronic diseases. J Adolescent Health 1990;11:501-4.
5. Newacheck PW, McManus MA, Fox AB. Prevalence and impact of chronic illness among adolescents. AJDC 1991;145:1367-73.
6. Pless IB, Power C, Peckham CS. Longterm psychosocial sequelae of chronic physical disorders in childhood. Pediatrics 1993;91:1131-6.
7. Kellerman J, Zeltzer L, Ellenberg L, et al. Psychological effects of illness in adolescence. I. Anxiety, self-esteem, and perception of control. J Pediatr 1980;97:126-31.
8. Zeltzer L, Kellerman J, Ellenberg L, et al. Psychosocial effects of illness in adolescence. II. Impact of illness in adolescents - crucial issues and coping styles. J Pediatr 1980;97: 132-8.
9. Cappelli M, McGrath PJ, Heick CE, et al. Chronic disease and its impact. The adolescent’s perspective. J Adolescent Health Care 1989;10:283-8.
10. Cadman D, Rosenbaum P, Boyle M, Offord DR. Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Pediatrics 1991;87:884-9.
11. Drotar DD, Agle DP, Eck CK, Thompson PA. Psychological response to HIV positivity in hemophilia. Pediatrics 1995;96:1062-9.
12. Wolman C. Resnick MD, Harris LJ, Blum RW. Emotional well-being among adolescents with and without chronic conditions. J Adolescent Health 1994;15:199-204.
13. Wolman C, Basco DE. Factors influencing self-esteem and self consciousness in adolescents with spina bifida. J Adolescent Health 1994;15:543-8.
14. Greenberg HS, Kazak AE, Meadows AT. Psychologic functioning in 8-to16 year-old cancer survivors and their parents. J Pediatr 1989;114:488-93.
15. Weiland SK, Bless IB, Roghmann KJ. Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers. Pediatrics 1992;89: 445-9.
16. Gode RO, Scott Smith M. Effects of chronic disorders on adolescent development: self, amily, friends and school. In: M Scott Smith (ed.).Chronic disorders in adolescence. Boston: John Wright PSG Inc.,1983:31.
17. Suris JC, Parera N, Puig C. Chronic illness and emotional distress in adolescence. J Adolescent Health 1996;19:153-6.
18. Suris JC, Resnick MD, Cassuto N, Blum RWM. Sexual behavior and adolescents with chronic disease and disability. J Adolescent Health 1996;19:124-31.
19. Ratip S, Modell B. Psychological and social aspects of the thalassemia. Seminars in Hematology 1996;33:53-65.
20. Massaglia P, Carpignano M. Psychology of the thalassemia patient and his family. In: Thalassemia Today. The mediterranean experience. Proceedings of the 2nd Mediterranean Meeting. Milano, 1985:28-30.
21. Tsiantis J, Dragonas Th, Richarson D, et al. Psychosocial problems and adjustment of children with beta-thalassemia and their families. European Child & Adolescent Psychiatry 1996;5:193-203.
22. Politis C, Di Palma A, Fisfis M, et al. Social integration of the older thalassemic patient. Arch Dis Childhood 1990;65:984-6.
23. Zani B, Di Palma A, Vullo C. Psychosocial aspects of chronic illness in adolescents with thalassaemia major. J Adolescence 1995;1: 387-402.
24. Di Palma A, Vullo C, Zani B, Facchin A. Psychosocial integration of adolescents and young adults with thalassemia. Ann N Y Acad Sci 1998;850:355-60.
25. Bush S, Mandel FS, Giardina P. Future orientation and life expectations of adolescents and young adults with Thalassemia Major. Ann N Y Acad Sci 1998;850:361-9.
26. Wasserman AL, Thompson EJ, Wilimas J, et al. The psychological status of survivors of childhood/adolescent Hodgkin’s disease. AJDC 1987;141:626-31.