Neurotic manifestations in adolescents with thalassemia major
http://www.100md.com
《美国医学杂志》
1 Department of Psychology, University of Rajasthan, Jaipur, India
2 J.K.Lone Hospital, Jaipur, Rajasthan, India
Abstract
Objective. To study the neurotic manifestations in thalassemic adolescents as a consequence of long-term illness. Methods. From July 2003, thirty six thalassemic adolescents and forty normal adolescents were selected with age ranging from13 to 18, and with same socio economic status and family background. Middlesex Hospital Questionnaire by Crown and Crisp [1966] was administered and Mann Whiteny 'U' test was employed to measure free-floating anxiety, phobia, somatic anxiety, obsession, depression, hysteria and total neuroticism score. An interview was conducted along with the questionnaire to detect the problems in depth. Parents of thalassemic adolescents were interviewed subsequently to realize the behavioral problems existing along with neuroticism. Results. Thirty-six of thalassemic and all forty normal adolescents returned the questionnaires. The responses suggest a marked difference in total neuroticism score and all other variables except that of hysteria. The interview on parents of thalassemic adolescents exposed various behavioral problems in these adolescents. Conclusions. Thalassemic adolescents were having higher scores in neuroticism. Some behavioral problems are also found to exist along with neurotic manifestations. There remains a need to improve the management of thalassemia in terms of psychological aspects in order to improve the mental health of this group.
Keywords: Thalassemia; Free-floating anxiety; Phobia; Obsession; Somatic anxiety; Depression; Hysteria
Adolescence, a period of psychic reorganization, which allows for new adjustments in order to face future life and reorganize experience of the past, is one of the critical phases of existence. For the adolescent with an infirmity or chronic illness, and for his family, there exists specific problems in addition to those encountered by a healthy adolescent. The painful realization of social, professional and relational barriers is reactivated. The feeling of failure and helplessness, the impairment of self-esteem, and anger at being the victim of the unfairness of destiny, represent a supplementary affective burden for the adolescent and his family. This results in a risk of deterioration, either towards affective and social withdrawal expressed by over adaptation and weakening of psychic functions, or towards auto aggressive acting-out or various forms of marginalisation.
Thalassemia is one of the inherited hemoglobinopathies responsible for a large number of chronic illnesses throughout the world. The clinical picture of thalassemia presents a wide range of problems. The treatment is based on periodic red blood cell transfusion, daily iron chelation, and sometimes spleenectomy. It gives a very severe burden for patients and their families. In addition, treatment also may cause very severe complications which include lesions of many organs and tissues due to iron deposit [in spite of iron chelation treatment], transfusion transmitted diseases, side effects due to iron chelators, an increased susceptibility to overwhelming infections due to spleenectomy.
Many neurotic symptomatologies were found in children with thalassemia major in different surveys. Depressive moods and anxiety were diagnosed in children with thalassemia major in a study conducted in Italy.[1] Same results were found in a similar study conducted in Singapore.[2] It is also observed that subjects with chronic illness limiting their daily life, experience more depression than those without limiting daily life.[3] Another study conducted in Utrecht, Netherlands[4] points to the depressive coping styles in thalassemic adolescents. But in India, such a study is a lay felt. To fill up this gap, the present study has been carried out.
Material and Methods
Questionnaires : (i) Socio-demographic information-drawing information regarding patient's social, physiological and family details. (ii) Middlesex Hospital Questionnaire [MHQ]-It is a 48-item questionnaire developed by Crown and Crisp1966.[5] It provides total quantitative score on neurosis besides six neurotic manifestations, i.e. free-floating anxiety, phobia, obsession, somatic anxiety, depression, and hysteria. It is reported to be a reliable and valid measure of neurosis. It was used to quantify level of neuroticism in thalassemic and normal adolescents.
Data collection
The study was carried out in J.K.Lone hospital, Jaipur, Santokba Durlabhji Hospital Jaipur and Umed hospital Jodhpur from July 2003 to June 2004. MHQ was administered on thalassemic adolescents when they were admitted to the day care center for blood transfusion. They were explained about the questionnaire and doubts were cleared. Data from normal controls were collected from homes and schools. The candidates before MHQ also filled the socio demographic information sheets. Scoring was done for all six factors and total neuroticism. A semi-structured interview was performed on these adolescents after the questionnaire to get in-depth information regarding neuroticism. Subsequently parents of thalassemic adolescents were interviewed to find out behavioral problems in these adolescents.
Analyses
The data collected from thalassemic adolescents and controls were analyzed with Mann-Whiteny U test. Mean and SD were calculated along with U and Z values. Separate tests were applied to free-floating anxiety, phobia, obsession, somatic anxiety, depression, hysteria and also for total neuroticism. Interview of non thalassemics and thalassemics and parents of thalassemic adolescents were recorded and analysed.
Results
The results of the study table2 table3 were worked out which indicated that a significant difference exist between thalassemic and non-thalassemic adolescents in case of their neurotic tendencies, total mean score of thalassemic adolescent's being 44.28 and that of non- thalassemic, 35.30. All factors of neuroticism except that of hysteria found to be significantly different in thalassemic and non-thalassemic adolescents. Free-floating anxiety showed a significantly higher difference with mean for thalassemic 5.36 and for non-thalassemic 3.88. Phobia was also significantly higher with mean scores 6.89 for thalassemic and 4.89 for non thalassemic. Somatic anxiety revealed a similar pattern with thalassemic having 6.39 mean and non-thalassemic having 3.93 mean. Depression was found to be significantly higher in thalassemic adolescents' 7.44 when compared to non-thalassemic adolescents' 5.85. Same was the case with obsession, 7.89 for thalassemics and 6.73 for non-thalassemics. But surprisingly, there was no significant difference present in hysteria with 10.42 and 10.07 for thalassemics and non-thalassemics respectively.
Interview table4 revealed that 24(66.7%) thalassemic and 17 (42.5%) non-thalassemic adolescents were having anxiety related problems, 28(77.8%) thalassemic and 8 (20%) non-thalassemic adolescents were having phobia, 21(58.3%) thalassemic and 9(22.5%) non thalassemic adolescents were having obsession, 31(86.1%) thalassemic and 11(27.5%) non-thalassemic adolescents were having somatic anxiety, 18 (50%) thalassemic and 14 (35%) non thalassemic adolescents were having depressive symptoms and 4(11.1%) thalassemic and 4(10%) non thalassemic adolescents were having hysteric manifestations.
Interview of the parents table5 of thalassemic adolescents revealed various behavioral problems such as problems in getting along with others 10 (27.7%), learning difficulties 3 (8.3%), temper tantrums 14 (38.8%), disobedience 10 (27.7%), mood swings 15 (41.6%), somatic problems 20 (55.5%), quarrel with friends and siblings 8 (22.2%), thumb sucking and nail biting 2 (5.5%), impulsivity 3 (8.3%), and fearful to new people and places 12 (33.3%) in thalassemic adolescents.
Discussion
Findings of this study highlight a significant difference in thalassemic and non-thalassemic adolescents in terms of their neurotic manifestations. A constant high level of anxiety that is not tied to any specific threat characterizes free-floating anxiety. Severe physical disease, visible and disabling for years in everyday life, seems to increase the risk for mental problems.[2], [6], [7], [8] Thalassemic adolescents are having a lot of physical problems, which put them under stress. A recent study suggests that anxiety disorders may be more strongly related to early stress exposure.[9] Most of the thalassemic patients experience headaches related to the low hemoglobin levels and weakness. Research reveals anxiety and depression as co-morbidities present among patients with chronic
pain.[10], [11],[12] Interview revealed that these children are anxious about the treatment modalities, effectiveness of iron chelation and complications related to the iron chelation. Adolescence itself is a time which demands more adjustment skills. An illness superimposed on the existing problems causes an emotional outburst, which needs to be handled properly. If not, the overlooked needs may become manifested as anxiety disorders. Social and psychological characteristics of adolescents with type 1 diabetes[13] and cancer patients[14] revealed anxiety and depression. Thalassemia, being a disease of chronic nature, it can impose same kind of anxiety and worry as any other chronic illness. Bivariate predictors of adolescent panic attacks in a study included child negative affect.[15] This negative affect may be an after effect of chronic illness.
Phobia is presented by a persistent irrational fear of an object or situation that presents no real danger. Our study revealed a marked difference in thalassemic and non- thalassemic adolescents in terms of phobia. Most of the thalassemic population reported fear related to blood transfusions. Some of these children are having fear of death. Parents reported fear of new people and places in 33.3% of these children. Many of the thalassemic adolescents may experience fear related to intravenous line insertion and subcutaneous infusion pumps. Due to the over growth of bones and disfigurement occurs in the long run, a thalassemic child may confine him/herself inside which can be manifested as social phobia. These kind of phobic reactions were documented earlier.[16], [17] A study conducted on factors helping in recovery of phobic disorders gives the physical and mental well-being all along the life course.[18] However, it is impossible for a thalassemic child to stay symptom-free most of the time which predisposes him to a certain degree of anxiety phobic reactions.
In this study, thalassemic adolescents revealed an increased level of somatic anxiety when compared to normal controls. The somatic anxiety is marked by history of diverse physical complaints that appear to be psychological in origin. In this study 86% thalassemic adolescents reported somatic symptomatology and 55.5% parents detected somatic problems in their thalassemic children. Somatic problems are reported to occur in many chronic diseases.[19], [20] Even thalassemia is a disease with same kind of chronicity, somatic anxiety in thalassemic children are not very easy to differentiate as they usually live with a lot of physical problems and a wide variety of symptoms such as cardiovascular, neurological, pulmonary and gastrointestinal which occurs as a side effect of iron load in the body.
Depression in thalassemic adolescents is well-documented. The patients feel more distressed from their treatment than from the disease itself. They react to disease related distress with a variety of coping strategies and some of the most frequently used are mal-adaptive, indicating feelings of helplessness[21] and hopelessness.[22] But same type of study conducted in USA gave a contrary result, saying, there is no difference between thalassemic and non-thalassemic subjects in hopelessness, future expectations and perceived social support.[23] In this study thalassemic adolescents were having a higher score in the depression as compared to the normal adolescents. However, interventions that allow a young person to explore meaning, build self-esteem, and acceptance through positive connections are likely to improve outcomes in this group. The range of difference seen from country to country may be due to the practice of different treatment modalities, patient adaptation of treatment, level of awareness about the disease and financial, political support given by the government.
Obsessions are marked by persistent uncontrollable intrusions of unwanted thoughts. People troubled by obsessions may feel that they have lost control of their mind. The results of our study show a marked difference in obsession between thalassemic and non-thalassemic adolescents in which thalassemic adolescents inclined more towards the negative side. Obsession is also an anxiety disorder. For the people who experience obsession, the appraisal of intrusion is the major source of distress rather than the content of intrusion.[24] Specific studies regarding obsessive thoughts in chronically ill patients are scanty. But it's clear from the results that there is a difference between normal and thalassemic children in intrusive thoughts. Thalassemic adolescents have frequent intrusive thoughts of death and their of parting from loved ones. This should be taken care of because in a later stage these obsessions may be operating with a mental model of experience that may blur the boundaries between internal [cognitive] and external events.[25]
In hysteria we usually find a loss of function in a single organ system, which does not have an organic basis. Many studies reveal hysteric manifestations in chronically ill patients.[26], [27], [28], [29], [30] But another study on neurotic traits and duration of illness showed no correlation.[31] In our study, we couldn't find a significant difference between thalassemic and non-thalassemic children in terms of hysteria. This surprising result may be because of the fact that thalassemic adolescents are already having problems with all their organ systems and there is hardly any need of presenting a problem for a secondary gain. We can also conclude that the elevated scores in the somatic area to be more physical than psychological in origin.
Anyhow, there exist a need for thalassemic adolescents to be taken care of their anxieties and worries in order to prevent the development of further emotional and adjustment problems. Moreover, the challenge of adjusting to a chronic illness can provide an excellent opportunity for the adolescent to master crucial skills such as emotion regulation and problem solving, provided their needs are met and a positive support system operating both at home and outside. In India, we need a more comprehensive mode of treatment, which includes psychological and spiritual factors as well to enhance the psychosocial adaptation of thalassemic children and their family. Moreover, treatment of a thalassemic child impose a big financial burden over parents which deny these children accessibility to modern treatment modalities. So, government and other welfare organizations are recommended to direct some of their funds towards this grave problem, which will enable a thalassemic child, when grown to an adult, to function as productively as any other normal human being.
We are aware that this study has limitations. It is not possible to be sure that all subjects who participated in the study gave honest answers. All thalassemic adolescents from Rajasthan might not have included in the study. However, we are confident that the results of this study reflect the aim to evaluate the neurotic manifestations in thalassemic adolescents in Rajasthan.[33]
Acknowledgement
The authors wish to acknowledge administration of Santokba Durlabhgi Hospital Jaipur, J. K Lone Hospital Jaipur and Umed Hospital Jodhpur for providing us with the data.
References
1. Guasco G, La Mantia A, Cuniolo A. Psychological problems of thalassemic subjects. Pediatr Med Chir 1987 May-Jun;9(3) : 269-279.
2. Olsson CA, Bond L, Johnson MW, Forer DL, Boyce MF, Sawyer SM. Adolescent chronic illness: a qualitative study of psychosocial adjustment. Ann Acad Med Singapore 2003 Jan;32(1) : 43-50.
3. Huurre TM, Aro HM. Long-term psychosocial effects of persistent chronic illness. A follow-up study of Finnish adolescents aged 16 to 32 years. Eur Child Adolesc Psychiatry 2002 Apr; 11(2) : 85-91.
4. Meijer SA, Sinnema G, Bijstra JO, Mellenbergh GJ, Wolters WH. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness. Soc Sci Med 2002 May; 54(9) : 1453-1461.
5. Crown S, Crisp AH. A short clinical diagnostic self rating scale for psychoneurotic patients-the M.H.Q.Brit. jnl of Psc, 1961; 112 : 917.
6. Kokkonen J, Kokkonen ER. Prevalence of mental disorders in young adults with chronic physical diseases since childhood as identified by the Present State Examination and the CATEGO program. Acta Psychiatr Scand 1993 Apr;87(4) : 239-243.
7. Phillips NK, Hammen CL, Brennan PA, Najman JM, Bor W. Early adversity and the prospective prediction of depressive and anxiety disorders in adolescents. J Abnorm Child Psychol 2005 Feb; 33(1) : 13-24.
8. Matta AP, Moreira Filho PF. Depressive symptoms and anxiety in patients with chronic and episodic tension-type headache. Arq Neuropsiquiatr 2003 Dec; 61(4) : 991-994. Epub 2004 Jan 6.
9. Manevich TM, Sokolova ED, Iakhno NN, Rogovina EG. Specifics of personality and mental status in children and adolescence with chronic tension-type headache. Zh Nevrol Psikhiatr Im S S Korsakova 2004; 104(2) : 11-15.
10. McWilliams LA, Cox BJ, Enns MW. Mood and anxiety disorders associated with chronic pain: an examination in a nationally representative sample. Pain 2003 Nov; 106(1-2):127-133.
11. Christian B. Growing up with chronic illness: psychosocial adjustment of children and adolescents with cystic fibrosis. Annu Rev Nurs Res 2003; 21 : 151-172.
12. Thomas J, Jones G, Scarinci I, Brantley P. A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses. Diabetes Care 2003 Aug; 26(8) : 2311-2317.
13. Moussa MA, Alsaeid M, Abdella N, Refai TM, Al-Sheikh N, Gomez JE. Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Soc Sci Med 2005 Apr;60(8) : 1835-1844.
14. Thomas J, Jones G, Scarinci I, Brantley P. A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses. Diabetes Care 2003 Aug;26(8) : 2311-2317.
15. Moussa MA, Alsaeid M, Abdella N, Refai TM, Al-Sheikh N, Gomez JE. Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Soc Sci Med 2005 Apr; 60(8): 1835-1844.
16. Akechi T, Nakano T, Uchitomi Y. Scientific background of psycho-oncology. Seishin Shinkeigaku Zasshi 2004; 106(6): 764-771.
17. Hayward C, Wilson KA, Lagle K, Killen JD, Taylor CB: Parent-reported predictors of adolescent panic attacks. J Am Acad Child Adolesc Psychiatry 2004 May; 43(5): 613-620.
18. Asmundson GJ, Norton GR, Jacobson SJ. Social, blood/injury, and agoraphobic fears in patients with physically unexplained chronic pain: are they clinically significant Anxiety 1996; 2(1) : 28-33.
19. Manevich TM, Sokolova ED, Iakhno NN, Rogovina EG. Specifics of personality and mental status in children and adolescence with chronic tension-type headache. Zh Nevrol Psikhiatr Im S S Korsakova 2004; 104(2) : 11-15.
20. DeWit DJ, Ogborne A, Offord DR, MacDonald K. Antecedents of the risk of recovery from DSM-III-R social phobia. Psychol Med 1999 May; 29(3) : 569-582.
21. Schonweiler R, Neuschulte C, Paar GH. Illness behavior and depression in tinnitus patients. Laryngorhinootologie 1989 May; 68(5) : 267-270.
22. Monsen K, Havik OE. Psychological functioning and bodily conditions in patients with pain disorder associated with psychological factors. Br J Med Psychol 2001 Jun; 74(Pt 2) : 183-195.
23. Goldbeck L, Baving A, Kohne E. Psychosocial aspects of beta-thalassemia: distress, coping and adherence. Klin Padiatr 2000 Sep-Oct; 212(5) : 254-259.
24. Aydin B, Yaprak I, Akarsu D, Okten N, Ulgen M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatr Jpn 1997 Jun; 39(3) : 354-357.
25. Bush S, Mandel FS, Giardina PJ. Future orientation and life expectations of adolescents and young adults with thalassemia major. Ann N Y Acad Sci 1998 Jun 30; 850 : 361-369.
26. Rachman, S.J. Obsesional-Compulsive checking.Behavioural Research and Therapy 1976; 14 : 269-277.
27. Wells, A. Meta-cognition and worry.Behavioural and Cognitive Psychotherapy. 1995,23 : 301-20.
28. Crews WD Jr, Jefferson AL, Broshek DK, Rhodes RD, Williamson J, Brazil AM, Barth JT, Robbins MK. Neuropsychological dysfunction in patients with end-stage pulmonary disease: lung transplant evaluation. Arch Clin Neuropsychol 2003 May; 18(4) : 353-362.
29. Modrego PJ, Pina MA, Galindo M, Minguez J. Study of psychopathology in patients with chronic non-lesional epilepsy: a Minnesota multiphasic personality inventory profile controlled study. Eur Neurol 2002; 48(2) : 80-86.
30. Michelotti A, Martina R, Russo M, Romeo R. Personality characteristics of temporomandibular disorder patients using M.M.P.I. Cranio 1998 Apr; 16(2) : 119-125.
31. Blakely AA, Howard RC, Sosich RM, Murdoch JC, Menkes DB, Spears GF. Psychiatric symptoms, personality and ways of coping in chronic fatigue syndrome. Psychol Med 1991 May; 21(2) : 347-362.
32. Berghuis JP, Heiman JR, Rothman I, Berger RE. Psychological and physical factors involved in chronic idiopathic prostatitis. J Psychosom Res 1996 Oct; 41(4) : 313-325.
33. Invernizzi G, Gala C, Buono M, Cittone L, Tavola T, Conte G. Neurotic traits and disease duration in headache patients. Cephalalgia 1989 Sep; 9(3) : 173-178.(Moorjani JD, Issac Chithi)
2 J.K.Lone Hospital, Jaipur, Rajasthan, India
Abstract
Objective. To study the neurotic manifestations in thalassemic adolescents as a consequence of long-term illness. Methods. From July 2003, thirty six thalassemic adolescents and forty normal adolescents were selected with age ranging from13 to 18, and with same socio economic status and family background. Middlesex Hospital Questionnaire by Crown and Crisp [1966] was administered and Mann Whiteny 'U' test was employed to measure free-floating anxiety, phobia, somatic anxiety, obsession, depression, hysteria and total neuroticism score. An interview was conducted along with the questionnaire to detect the problems in depth. Parents of thalassemic adolescents were interviewed subsequently to realize the behavioral problems existing along with neuroticism. Results. Thirty-six of thalassemic and all forty normal adolescents returned the questionnaires. The responses suggest a marked difference in total neuroticism score and all other variables except that of hysteria. The interview on parents of thalassemic adolescents exposed various behavioral problems in these adolescents. Conclusions. Thalassemic adolescents were having higher scores in neuroticism. Some behavioral problems are also found to exist along with neurotic manifestations. There remains a need to improve the management of thalassemia in terms of psychological aspects in order to improve the mental health of this group.
Keywords: Thalassemia; Free-floating anxiety; Phobia; Obsession; Somatic anxiety; Depression; Hysteria
Adolescence, a period of psychic reorganization, which allows for new adjustments in order to face future life and reorganize experience of the past, is one of the critical phases of existence. For the adolescent with an infirmity or chronic illness, and for his family, there exists specific problems in addition to those encountered by a healthy adolescent. The painful realization of social, professional and relational barriers is reactivated. The feeling of failure and helplessness, the impairment of self-esteem, and anger at being the victim of the unfairness of destiny, represent a supplementary affective burden for the adolescent and his family. This results in a risk of deterioration, either towards affective and social withdrawal expressed by over adaptation and weakening of psychic functions, or towards auto aggressive acting-out or various forms of marginalisation.
Thalassemia is one of the inherited hemoglobinopathies responsible for a large number of chronic illnesses throughout the world. The clinical picture of thalassemia presents a wide range of problems. The treatment is based on periodic red blood cell transfusion, daily iron chelation, and sometimes spleenectomy. It gives a very severe burden for patients and their families. In addition, treatment also may cause very severe complications which include lesions of many organs and tissues due to iron deposit [in spite of iron chelation treatment], transfusion transmitted diseases, side effects due to iron chelators, an increased susceptibility to overwhelming infections due to spleenectomy.
Many neurotic symptomatologies were found in children with thalassemia major in different surveys. Depressive moods and anxiety were diagnosed in children with thalassemia major in a study conducted in Italy.[1] Same results were found in a similar study conducted in Singapore.[2] It is also observed that subjects with chronic illness limiting their daily life, experience more depression than those without limiting daily life.[3] Another study conducted in Utrecht, Netherlands[4] points to the depressive coping styles in thalassemic adolescents. But in India, such a study is a lay felt. To fill up this gap, the present study has been carried out.
Material and Methods
Questionnaires : (i) Socio-demographic information-drawing information regarding patient's social, physiological and family details. (ii) Middlesex Hospital Questionnaire [MHQ]-It is a 48-item questionnaire developed by Crown and Crisp1966.[5] It provides total quantitative score on neurosis besides six neurotic manifestations, i.e. free-floating anxiety, phobia, obsession, somatic anxiety, depression, and hysteria. It is reported to be a reliable and valid measure of neurosis. It was used to quantify level of neuroticism in thalassemic and normal adolescents.
Data collection
The study was carried out in J.K.Lone hospital, Jaipur, Santokba Durlabhji Hospital Jaipur and Umed hospital Jodhpur from July 2003 to June 2004. MHQ was administered on thalassemic adolescents when they were admitted to the day care center for blood transfusion. They were explained about the questionnaire and doubts were cleared. Data from normal controls were collected from homes and schools. The candidates before MHQ also filled the socio demographic information sheets. Scoring was done for all six factors and total neuroticism. A semi-structured interview was performed on these adolescents after the questionnaire to get in-depth information regarding neuroticism. Subsequently parents of thalassemic adolescents were interviewed to find out behavioral problems in these adolescents.
Analyses
The data collected from thalassemic adolescents and controls were analyzed with Mann-Whiteny U test. Mean and SD were calculated along with U and Z values. Separate tests were applied to free-floating anxiety, phobia, obsession, somatic anxiety, depression, hysteria and also for total neuroticism. Interview of non thalassemics and thalassemics and parents of thalassemic adolescents were recorded and analysed.
Results
The results of the study table2 table3 were worked out which indicated that a significant difference exist between thalassemic and non-thalassemic adolescents in case of their neurotic tendencies, total mean score of thalassemic adolescent's being 44.28 and that of non- thalassemic, 35.30. All factors of neuroticism except that of hysteria found to be significantly different in thalassemic and non-thalassemic adolescents. Free-floating anxiety showed a significantly higher difference with mean for thalassemic 5.36 and for non-thalassemic 3.88. Phobia was also significantly higher with mean scores 6.89 for thalassemic and 4.89 for non thalassemic. Somatic anxiety revealed a similar pattern with thalassemic having 6.39 mean and non-thalassemic having 3.93 mean. Depression was found to be significantly higher in thalassemic adolescents' 7.44 when compared to non-thalassemic adolescents' 5.85. Same was the case with obsession, 7.89 for thalassemics and 6.73 for non-thalassemics. But surprisingly, there was no significant difference present in hysteria with 10.42 and 10.07 for thalassemics and non-thalassemics respectively.
Interview table4 revealed that 24(66.7%) thalassemic and 17 (42.5%) non-thalassemic adolescents were having anxiety related problems, 28(77.8%) thalassemic and 8 (20%) non-thalassemic adolescents were having phobia, 21(58.3%) thalassemic and 9(22.5%) non thalassemic adolescents were having obsession, 31(86.1%) thalassemic and 11(27.5%) non-thalassemic adolescents were having somatic anxiety, 18 (50%) thalassemic and 14 (35%) non thalassemic adolescents were having depressive symptoms and 4(11.1%) thalassemic and 4(10%) non thalassemic adolescents were having hysteric manifestations.
Interview of the parents table5 of thalassemic adolescents revealed various behavioral problems such as problems in getting along with others 10 (27.7%), learning difficulties 3 (8.3%), temper tantrums 14 (38.8%), disobedience 10 (27.7%), mood swings 15 (41.6%), somatic problems 20 (55.5%), quarrel with friends and siblings 8 (22.2%), thumb sucking and nail biting 2 (5.5%), impulsivity 3 (8.3%), and fearful to new people and places 12 (33.3%) in thalassemic adolescents.
Discussion
Findings of this study highlight a significant difference in thalassemic and non-thalassemic adolescents in terms of their neurotic manifestations. A constant high level of anxiety that is not tied to any specific threat characterizes free-floating anxiety. Severe physical disease, visible and disabling for years in everyday life, seems to increase the risk for mental problems.[2], [6], [7], [8] Thalassemic adolescents are having a lot of physical problems, which put them under stress. A recent study suggests that anxiety disorders may be more strongly related to early stress exposure.[9] Most of the thalassemic patients experience headaches related to the low hemoglobin levels and weakness. Research reveals anxiety and depression as co-morbidities present among patients with chronic
pain.[10], [11],[12] Interview revealed that these children are anxious about the treatment modalities, effectiveness of iron chelation and complications related to the iron chelation. Adolescence itself is a time which demands more adjustment skills. An illness superimposed on the existing problems causes an emotional outburst, which needs to be handled properly. If not, the overlooked needs may become manifested as anxiety disorders. Social and psychological characteristics of adolescents with type 1 diabetes[13] and cancer patients[14] revealed anxiety and depression. Thalassemia, being a disease of chronic nature, it can impose same kind of anxiety and worry as any other chronic illness. Bivariate predictors of adolescent panic attacks in a study included child negative affect.[15] This negative affect may be an after effect of chronic illness.
Phobia is presented by a persistent irrational fear of an object or situation that presents no real danger. Our study revealed a marked difference in thalassemic and non- thalassemic adolescents in terms of phobia. Most of the thalassemic population reported fear related to blood transfusions. Some of these children are having fear of death. Parents reported fear of new people and places in 33.3% of these children. Many of the thalassemic adolescents may experience fear related to intravenous line insertion and subcutaneous infusion pumps. Due to the over growth of bones and disfigurement occurs in the long run, a thalassemic child may confine him/herself inside which can be manifested as social phobia. These kind of phobic reactions were documented earlier.[16], [17] A study conducted on factors helping in recovery of phobic disorders gives the physical and mental well-being all along the life course.[18] However, it is impossible for a thalassemic child to stay symptom-free most of the time which predisposes him to a certain degree of anxiety phobic reactions.
In this study, thalassemic adolescents revealed an increased level of somatic anxiety when compared to normal controls. The somatic anxiety is marked by history of diverse physical complaints that appear to be psychological in origin. In this study 86% thalassemic adolescents reported somatic symptomatology and 55.5% parents detected somatic problems in their thalassemic children. Somatic problems are reported to occur in many chronic diseases.[19], [20] Even thalassemia is a disease with same kind of chronicity, somatic anxiety in thalassemic children are not very easy to differentiate as they usually live with a lot of physical problems and a wide variety of symptoms such as cardiovascular, neurological, pulmonary and gastrointestinal which occurs as a side effect of iron load in the body.
Depression in thalassemic adolescents is well-documented. The patients feel more distressed from their treatment than from the disease itself. They react to disease related distress with a variety of coping strategies and some of the most frequently used are mal-adaptive, indicating feelings of helplessness[21] and hopelessness.[22] But same type of study conducted in USA gave a contrary result, saying, there is no difference between thalassemic and non-thalassemic subjects in hopelessness, future expectations and perceived social support.[23] In this study thalassemic adolescents were having a higher score in the depression as compared to the normal adolescents. However, interventions that allow a young person to explore meaning, build self-esteem, and acceptance through positive connections are likely to improve outcomes in this group. The range of difference seen from country to country may be due to the practice of different treatment modalities, patient adaptation of treatment, level of awareness about the disease and financial, political support given by the government.
Obsessions are marked by persistent uncontrollable intrusions of unwanted thoughts. People troubled by obsessions may feel that they have lost control of their mind. The results of our study show a marked difference in obsession between thalassemic and non-thalassemic adolescents in which thalassemic adolescents inclined more towards the negative side. Obsession is also an anxiety disorder. For the people who experience obsession, the appraisal of intrusion is the major source of distress rather than the content of intrusion.[24] Specific studies regarding obsessive thoughts in chronically ill patients are scanty. But it's clear from the results that there is a difference between normal and thalassemic children in intrusive thoughts. Thalassemic adolescents have frequent intrusive thoughts of death and their of parting from loved ones. This should be taken care of because in a later stage these obsessions may be operating with a mental model of experience that may blur the boundaries between internal [cognitive] and external events.[25]
In hysteria we usually find a loss of function in a single organ system, which does not have an organic basis. Many studies reveal hysteric manifestations in chronically ill patients.[26], [27], [28], [29], [30] But another study on neurotic traits and duration of illness showed no correlation.[31] In our study, we couldn't find a significant difference between thalassemic and non-thalassemic children in terms of hysteria. This surprising result may be because of the fact that thalassemic adolescents are already having problems with all their organ systems and there is hardly any need of presenting a problem for a secondary gain. We can also conclude that the elevated scores in the somatic area to be more physical than psychological in origin.
Anyhow, there exist a need for thalassemic adolescents to be taken care of their anxieties and worries in order to prevent the development of further emotional and adjustment problems. Moreover, the challenge of adjusting to a chronic illness can provide an excellent opportunity for the adolescent to master crucial skills such as emotion regulation and problem solving, provided their needs are met and a positive support system operating both at home and outside. In India, we need a more comprehensive mode of treatment, which includes psychological and spiritual factors as well to enhance the psychosocial adaptation of thalassemic children and their family. Moreover, treatment of a thalassemic child impose a big financial burden over parents which deny these children accessibility to modern treatment modalities. So, government and other welfare organizations are recommended to direct some of their funds towards this grave problem, which will enable a thalassemic child, when grown to an adult, to function as productively as any other normal human being.
We are aware that this study has limitations. It is not possible to be sure that all subjects who participated in the study gave honest answers. All thalassemic adolescents from Rajasthan might not have included in the study. However, we are confident that the results of this study reflect the aim to evaluate the neurotic manifestations in thalassemic adolescents in Rajasthan.[33]
Acknowledgement
The authors wish to acknowledge administration of Santokba Durlabhgi Hospital Jaipur, J. K Lone Hospital Jaipur and Umed Hospital Jodhpur for providing us with the data.
References
1. Guasco G, La Mantia A, Cuniolo A. Psychological problems of thalassemic subjects. Pediatr Med Chir 1987 May-Jun;9(3) : 269-279.
2. Olsson CA, Bond L, Johnson MW, Forer DL, Boyce MF, Sawyer SM. Adolescent chronic illness: a qualitative study of psychosocial adjustment. Ann Acad Med Singapore 2003 Jan;32(1) : 43-50.
3. Huurre TM, Aro HM. Long-term psychosocial effects of persistent chronic illness. A follow-up study of Finnish adolescents aged 16 to 32 years. Eur Child Adolesc Psychiatry 2002 Apr; 11(2) : 85-91.
4. Meijer SA, Sinnema G, Bijstra JO, Mellenbergh GJ, Wolters WH. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness. Soc Sci Med 2002 May; 54(9) : 1453-1461.
5. Crown S, Crisp AH. A short clinical diagnostic self rating scale for psychoneurotic patients-the M.H.Q.Brit. jnl of Psc, 1961; 112 : 917.
6. Kokkonen J, Kokkonen ER. Prevalence of mental disorders in young adults with chronic physical diseases since childhood as identified by the Present State Examination and the CATEGO program. Acta Psychiatr Scand 1993 Apr;87(4) : 239-243.
7. Phillips NK, Hammen CL, Brennan PA, Najman JM, Bor W. Early adversity and the prospective prediction of depressive and anxiety disorders in adolescents. J Abnorm Child Psychol 2005 Feb; 33(1) : 13-24.
8. Matta AP, Moreira Filho PF. Depressive symptoms and anxiety in patients with chronic and episodic tension-type headache. Arq Neuropsiquiatr 2003 Dec; 61(4) : 991-994. Epub 2004 Jan 6.
9. Manevich TM, Sokolova ED, Iakhno NN, Rogovina EG. Specifics of personality and mental status in children and adolescence with chronic tension-type headache. Zh Nevrol Psikhiatr Im S S Korsakova 2004; 104(2) : 11-15.
10. McWilliams LA, Cox BJ, Enns MW. Mood and anxiety disorders associated with chronic pain: an examination in a nationally representative sample. Pain 2003 Nov; 106(1-2):127-133.
11. Christian B. Growing up with chronic illness: psychosocial adjustment of children and adolescents with cystic fibrosis. Annu Rev Nurs Res 2003; 21 : 151-172.
12. Thomas J, Jones G, Scarinci I, Brantley P. A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses. Diabetes Care 2003 Aug; 26(8) : 2311-2317.
13. Moussa MA, Alsaeid M, Abdella N, Refai TM, Al-Sheikh N, Gomez JE. Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Soc Sci Med 2005 Apr;60(8) : 1835-1844.
14. Thomas J, Jones G, Scarinci I, Brantley P. A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses. Diabetes Care 2003 Aug;26(8) : 2311-2317.
15. Moussa MA, Alsaeid M, Abdella N, Refai TM, Al-Sheikh N, Gomez JE. Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Soc Sci Med 2005 Apr; 60(8): 1835-1844.
16. Akechi T, Nakano T, Uchitomi Y. Scientific background of psycho-oncology. Seishin Shinkeigaku Zasshi 2004; 106(6): 764-771.
17. Hayward C, Wilson KA, Lagle K, Killen JD, Taylor CB: Parent-reported predictors of adolescent panic attacks. J Am Acad Child Adolesc Psychiatry 2004 May; 43(5): 613-620.
18. Asmundson GJ, Norton GR, Jacobson SJ. Social, blood/injury, and agoraphobic fears in patients with physically unexplained chronic pain: are they clinically significant Anxiety 1996; 2(1) : 28-33.
19. Manevich TM, Sokolova ED, Iakhno NN, Rogovina EG. Specifics of personality and mental status in children and adolescence with chronic tension-type headache. Zh Nevrol Psikhiatr Im S S Korsakova 2004; 104(2) : 11-15.
20. DeWit DJ, Ogborne A, Offord DR, MacDonald K. Antecedents of the risk of recovery from DSM-III-R social phobia. Psychol Med 1999 May; 29(3) : 569-582.
21. Schonweiler R, Neuschulte C, Paar GH. Illness behavior and depression in tinnitus patients. Laryngorhinootologie 1989 May; 68(5) : 267-270.
22. Monsen K, Havik OE. Psychological functioning and bodily conditions in patients with pain disorder associated with psychological factors. Br J Med Psychol 2001 Jun; 74(Pt 2) : 183-195.
23. Goldbeck L, Baving A, Kohne E. Psychosocial aspects of beta-thalassemia: distress, coping and adherence. Klin Padiatr 2000 Sep-Oct; 212(5) : 254-259.
24. Aydin B, Yaprak I, Akarsu D, Okten N, Ulgen M. Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatr Jpn 1997 Jun; 39(3) : 354-357.
25. Bush S, Mandel FS, Giardina PJ. Future orientation and life expectations of adolescents and young adults with thalassemia major. Ann N Y Acad Sci 1998 Jun 30; 850 : 361-369.
26. Rachman, S.J. Obsesional-Compulsive checking.Behavioural Research and Therapy 1976; 14 : 269-277.
27. Wells, A. Meta-cognition and worry.Behavioural and Cognitive Psychotherapy. 1995,23 : 301-20.
28. Crews WD Jr, Jefferson AL, Broshek DK, Rhodes RD, Williamson J, Brazil AM, Barth JT, Robbins MK. Neuropsychological dysfunction in patients with end-stage pulmonary disease: lung transplant evaluation. Arch Clin Neuropsychol 2003 May; 18(4) : 353-362.
29. Modrego PJ, Pina MA, Galindo M, Minguez J. Study of psychopathology in patients with chronic non-lesional epilepsy: a Minnesota multiphasic personality inventory profile controlled study. Eur Neurol 2002; 48(2) : 80-86.
30. Michelotti A, Martina R, Russo M, Romeo R. Personality characteristics of temporomandibular disorder patients using M.M.P.I. Cranio 1998 Apr; 16(2) : 119-125.
31. Blakely AA, Howard RC, Sosich RM, Murdoch JC, Menkes DB, Spears GF. Psychiatric symptoms, personality and ways of coping in chronic fatigue syndrome. Psychol Med 1991 May; 21(2) : 347-362.
32. Berghuis JP, Heiman JR, Rothman I, Berger RE. Psychological and physical factors involved in chronic idiopathic prostatitis. J Psychosom Res 1996 Oct; 41(4) : 313-325.
33. Invernizzi G, Gala C, Buono M, Cittone L, Tavola T, Conte G. Neurotic traits and disease duration in headache patients. Cephalalgia 1989 Sep; 9(3) : 173-178.(Moorjani JD, Issac Chithi)