The Department of Psychology Within a Pediatric Cardiac Transplant Unit

The Department of Psychology Within a Pediatric Cardiac Transplant Unit

The Department of Psychology Within a Pediatric Cardiac Transplant Unit A. Rossi, C. De Ranieri, P. Tabarini, V. Di Ciommo, R. Di Donato, G. Biondi, a...

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The Department of Psychology Within a Pediatric Cardiac Transplant Unit A. Rossi, C. De Ranieri, P. Tabarini, V. Di Ciommo, R. Di Donato, G. Biondi, and F. Parisi ABSTRACT In 1979, the department of Psychology started its activity to provide psychological support to patients and their families during the course of treatment and during the follow-up period. Since 1986, a transplantation program was initiated in the cardiology and pediatric cardiac surgery departments, performing 179 cardiac, 3 heart-kidney, 18 heart-lung 14 both lung, 1 heart-lung-liver, and 1 single lung transplantation. From 1993, to September 2010 the kidney transplant program has performed. 218 cases. Since 2008, we performed (32 liver and 1 intestinal transplantations). We examined the quality of life and coping with transplantation attitudes because there is recent evidence of high levels of family anxiety and depression related to a child’s poor response to the disease and compliance. Our work associated post-traumatic stress disorder (PTSD) with anxiety and with these clinical variables: gender pathology, rejection, number of drugs frequency of hospital visits, number of hospitalizations, as well as age at and time from transplantation. We examined 56 parents (25 fathers and 31 mothers) of cardiac transplant recipients. Our most relevant data demonstrated the presence of PTSD among 52% of mothers and 40% of fathers. Significant correlations were observed within the trait of anxiety. No correlations were noted between PTSD and other variables. Testing anxiety levels of parents is considered to be basic to provide psychological support to parents, encourage personal skills, and avoid PTSD symptoms. HE Department of Psychology started its activity in 1979 to provide psychological support to patients and their families during the course of treatment, particularly of chronic diseases. The department interests with transplantation activities using multidisciplinary protocols; namely, from 1986 to September 2010, 179 cardiac, 3 heart plus kidney, 18 heart plus lung, 14 both lungs, 1 heart-lung-liver, and 1 single lung transplantation. In addition since 1993, there have been 218 kidney transplantations. and since 2008, 32 liver and 1 intestine transplantation. Psychological support of children and adolescents who have undergone transplantation is comparable to that for patients with a chronic disease.1 However, the clinical experience has shown that unusual problems can arise for the individual and family during the course of an emotional and stressful experience, such as a transplantation.2–9 While treating these patients, we observed that feelings connected to this particular surgery deeply affected one’s sense of security, identity, and body integrity. Therefore, it is necessary to allow time to elaborate the loss, moving toward a dynamic, developmental re-adaptation.10

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In this scenario, where the themes of life and death are more closely inter-related than any other pathology or intervention, it is necessary to support the patient and the parents during the treatment course. We recognize various modes of family adaptation to the disease, as well as of the capabilities of the patient and family to face the difficulties.11 Psychological support to parents of young children helps them to avoid that their own feelings influence the children. Consequently, we sought to help them to address their reactivity in dealing with the difficulties that may be encountered during the treatment. As described in the literature, From the Pediatric Psychological Unit (A.R., C.D.R., P.T., G.B.); Thoracic Transplantation Unit (R.D.D., F.P.), Department of Pediatric Cardiology and Cardiac Surgery; and Epidemiology and Biostatistic Unit (V.D.C.), “Bambino Gesù” Pediatric Hospital, Rome, Italy Address reprint requests to Angela Rossi, Psychologist, Ospedale Pediatrico Bambino Gesù Roma Italy, P.zza Sant’Onofrio, 4 00165 Rome, Italy. E-mail: [email protected]

0041-1345/11/$–see front matter doi:10.1016/j.transproceed.2011.01.119

© 2011 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710

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Transplantation Proceedings, 43, 1164 –1167 (2011)

DEPARTMENT OF PSYCHOLOGY

the presence of anxiety among patients is often connected to hyper-involvement by their mothers.12,13 A transplantation can modify relational and personal relationships, triggering and amplifying pre-existent dysfunctional dynamics, disrupting growth processes between members and the entire family. Some parents display pre-existent psychological distress, such as anxiety and depression, while other families appear to be more capable of using their own personal resources (skills) and a method/ system (resilience), which allow positive adaptation with effective processes attitudes to the transplantation.7,14,15 Some past works have shown the difficulties faced by parents in an educational role. The family’s adaptation to the child’s clinical condition can be related to their pretransplantation psychological condition.16 The reported experience in17–19 suggests the necessity to provide a better definition of the emotional condition of the parents. Therefore, we sought possible factors that indicated mental distress to provide an early, focused psychological intervention.20 –23 This study was performed seeking to investigate the presence of post-traumatic stress disorder (PTSD) and its correlation with stable anxiety (trait anxiety) as well as pretransplantation and posttransplantation clinical variables, average number of hospitalizations in a year, and drug therapy. METHODS Study Design and Subjects This cross-sectional study recruited parents whose children underwent a cardiac transplantation between 1986 and 2005. Among the 123 cardiac transplant recipients, four patients required re transplantation and 51 died thereafter. At the time of the study there were 68 living patients whose parents were recruited for the evaluation 15 families did not agree to participate because they (a) were not interested (n ⫽ 6). However, (b) were against undergoing a psychological evaluation (n ⫽ 7), (c) had insufficient knowledge of the Italian language (n ⫽ 1) or (d) had failed to participate in check-up examinations (n ⫽ 1). Thus, this work analyzed tests performed on 56 parents: 31 mothers and 25 fathers. Their overall average age was 45 years and 5 months. The average age of the children at the time of transplantation was 9.5 years (range, 4 months–19 years) and the time elapsed from the transplantation was 6.7 years (range, 6 months–19 years). The epilogic diseases were cardiomyopathy (55%) or a congenital condition (45%). Also, 32% displayed rejection episodes. The patients underwent 9.9 check-ups per year in the day hospital and/or as inpatient care. The families came from the south (53%), the central regions (43%), or the north (4%) of Italy. The study was authorized by the Scientific Director of the Hospital. Recruitment occurred during routine required day hospital check-ups. The doctor responsible for the day hospital informed the families regarding the ongoing study, including a written explanation regarding its aims. The psychological staff discussed the informed consent with family and presented the evaluation instruments. Because of logistical and writing problems, tests were performed in a protected setting. Subsequently the results of the tests and any therapeutic results were given to the families, including a written form.

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Instruments Impact of Event Scale-Revised (IES-R) to evaluate PTSD and correlated symptoms was created according to the DSM-IV criteria.24 This self-administered questionaire composed of 22 items referred 3 symptomatic dimensions of PTSD as defined by the DSM-IV: intrusion, avoidance, and hypervigilance, yielding a total score of PTSD intensity. The participants were required to define their own level of stress during the last 7 days with regard to each symptom on a 5-point Likert-type scale: 0 for none to 4 for very much. The total IES scores were defined as follows: ⬍25 nonclinical; 26 –50 moderate or ⬎50 severe. Avoidance is defined as the tendency to avoid stimulations related to the trauma. Hypervigilance can lead to increased hastiness and lack of concentration. PTSD was established when high scores were present on the 3 scales. Post Traumatic Stress Symptoms (PTSS) occur when high scores are present in 2 of the 3 scales. State-Trait Anxiety Inventory (STAI).25 is a self-reported questionnaire of 40 items with multiplechoice answers. There were 2 subscales: 20 items evaluated state anxiety, meant as a temporary experience that occurs as a reaction to a situation and 20 items evaluated trait anxiety, meant as a stable personality trait. The test data were compared with those among an Italian control group. The scores were defined as follows: T ⬍50, normal; T between 50 and 60, symptomatic psychological distress group; and T ⬎60, symptomatic psychological disorder.

Data Analysis T tests were used to compare STAI (state and trait subscales) and IES subscales (intrusion, avoidance, and hypervigilance) among mothers and fathers. The level of statistical significance was set at P ⬍ .05. To assess whether there was a correlation between the PTSD and trait anxiety, we performed a series of correlation analyses among the IES and the STAI subscale scores.

RESULTS IES-R

The parental respondents who met diagnostic criteria for PTSD were as follows: 16 mothers (52%) and 10 fathers (40%), who appeared to have high scores in the 3 subscales of IES-R. Their mean scores as presented in Figure 1 are indicative of slight to moderate discomfort. Negative intrusive thoughts connected with the therapeutic program and distressing memories seemed to recur frequently both in mothers and fathers (intrusion). The parental respondents who met diagnostic criteria for PTSS were as follows: 4 mothers (13%) and 3 fathers (12%), who showed slight discomfort in the 2 subscales. Intrusion appeared to be frequent both among mothers and fathers. The remaining sample (40%) did not correspond to any diagnostic criterion of PTSS or PTSD. STAI

The mean T points in the STAI both for state anxiety and trait anxiety indicated anxiety discomfort. These results were the same for both mothers and fathers (Table 1). Correlation

To assess correlations between parents with PTSD and anxiety, we performed a series of analyses between raw

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Fig 1. Parental responses with high levels in the 3 subscales (M (mothers) ⫽ 16; F (fathers) ⫽ 10).The score within the parental responses was between 9 and 25 in subscales avoidance and intrusion. These results are indicative of a slight-moderate discomfort; the results between 7 and 19 in hypervigilance is indicative of a slight-moderate discomfort.

scores on STAI and IES. Student test did not highlight any significant data between the participants considering the subscales of both IES and STAI. No significant data were observed among the other variables considered; time elapsed from the transplantation, child’s age at transplantation and number of admissions. Correlations between the tool’s subscales were sought on the parents (STAI-IES; Fig 2). Greater attention was given to the trend of IES subscales (intrusion, avoidance, and hyper-vigilance) than to the trait anxiety subscale. A significant correlation was observed between avoidance and trait anxiety among the mothers (r2 ⫽ 0.68; P ⫽ .000) and the fathers (r2 ⫽ 0.229; P ⫽ .005; Fig 2). Thus, high levels of avoidance were associated with higher levels of anxiety. The same correlation was observed within the intrusion (r2 ⫽ 0.03664; P ⫽ .000) and the hypervigilance scales (r2 ⫽ 0.4297; P ⫽ .000) of the mothers and the fathers (intrusion: r2 ⫽ 0.2884; P ⫽ .005; hypervigilance: r2 ⫽ 0.3733; P ⫽ .001; Table 2). DISCUSSION

The emotional distress connected with the traumatic event of transplantation tended to take shape as a fleeting recollection in the mind of the parents (intrusion), who recalled real or symbolic aspects related to the painful experience. The emotional aspects can manifest themselves through mood and/or psychosomatic disorders (hypervigilance). Maybe the factor that is easier to control for the parents is avoidance. There was often the need to relive the traumatic Table 1. Parents State Anxiety and Trait Anxiety Mean T Points Mean T Points

Mothers (N ⫽ 31) Fathers (N ⫽ 25)

Fig 2. Correlation between avoidance subscale and the results of trait anxiety subscales within the mothers and the fathers.

event through places, people, and periodic check-ups. Parents who have high levels of trait anxiety (STAI), regarding the transplantation of their child, are likely to experience PTSD or PTSS. It is furthermore possible that an anxious personality structure may show more difficulty in coping and finding resilient strategies to face a chronic disease in their child. A subject with an anxious personality structure can be less capable of adjusting psychologically. The person has a higher risk of perceiving himself as not psychologically or socially able due to low self-esteem. This work has some important limitations: the study was cross-sectional and referred to pediatric patients who underwent transplantation at various times. For these reasons it must also be considered that immunosuppressive treatment has improved over time with increased survival rates. Society now considers transplantation not as the last possible treatment, but as a therapeutic option. The parents in our group had transplanted children of various ages. The level of anxiety, worry and anguish regarding their child’s future is likely to be different according to their ages, social background, economic resources, and social support. The data that we compared in a small sample group was acquired from self-report tools that measure anxiety and PTSD. Table 2. Significant Correlation Scores of Mother’s and Father’s Tests Mother (N ⫽ 31)

State Anxiety

Trait Anxiety

52.35 52.12

52.38 51.56

Avoidance Intrusion Hypervigilance

Fathers (N ⫽ 25)

0.001 0.000 0.000

Avoidance 0.000 Intrusion 0.005 Hypervigilance 0.001

DEPARTMENT OF PSYCHOLOGY

In conclusion, a specific focus on the psychological features of parents of patients attending a transplantation program may increase psychological and relational strategies, helping to reduce their tendency to PTSD. As reported in the literature, emotional problems in parents (anxiety and PTSD) can influence a patient’s capability to cope with the transplantation, to adhere to therapy, and to develop the mental elaboration process needed to face this experience. A further development of this study could be to examine correlations between the psychological conditions of the children patients and their parents. REFERENCES 1. Tabarini P, De Ranieri C, Rossi A, et al: La prevenzione del disagio psicologico in bambini con malattia acuta o cronica: un modello di intervento in Ospedale Pediatrico. Notiziario Ordine Psicologi 1:26, 2009 2. Lovera G, La consulenza psicosomatica in ospedale: un problema di metodo. Dalle basi teoriche alle linee operative. Med Psicosom 35:225, 1990 3. Biondi G, De Ranieri C, Tabarini P: II trapianto cardiaco in eta’ pediatrica e neonatale: l’assistenza psicologica -. Marino B, Piccoli G. (eds): II Trapianto Cardiaco Ortotopico. II donatore e il ricevente. Protocolli organizzativi e di condotta. Milano, Masson; 1990, P 415 4. Biondi G: Psychosocial aspects. In Calzolari A, Drago F, Turchetta A, Marcelletti C (eds): La riabilitazione del bambino operato per cardiopatia congenita (Rehabilitation after Cardiac Surgery). Rome: Tipografia Poliglotta Vaticana; 1991, p III 5. Uzark KC, Sauer SN, Lawrence KS, et al: The psychosocial impact of pediatric heart transplantation. J Heart Lung Transplant 11:1160, 1992 6. DeMaso DR, Twente AW, Spratt EG, et al: Impact of psychologic functioning, medical severity, and family functioning in pediatric heart transplantation. J Heart Lung Transplant 14:1102, 1995 7. Littlefield C, Abbey S, Fiducia DA, et al: Quality of life following transplantation of the heart, liver, and lungs. Gen Hosp Psychiatry 18(6 suppl):36S, 1996 8. Wray J, Radley-Smith R: Longitudinal aspect of psychological function in children after heart or heart-lung transplantation. J Heart Lung Transplant 25:345, 2006 9. Fine R, Alonso EM, Fischel JE, et al: Pediatric transplantation of the kidney, liver and heart: summary report. Pediat Transplant 8:75, 2004 10. Mintzer LL, Stuber ML, Seacord D, et al: Traumatic stress symptoms in adolescent organ transplant recipients. Pediatrics 115:1640, 2005

1167 11. Lovera G, Basile A, Bertoletti M, et al: L’assistenza psicologica nei trapianti d’organo. Annali dell’Istituto Superiore di Sanità Volume 36:225, 2000 12. Manne S, Dohamel K, Ostroff J, et al: Anxiety, depressive and post traumatic stress disorder among mothers of paediatric survivors of hematopoietic stem cell transplantation. Paediatrics 133:1700, 2004 13. Rodrigue JR, MacNaughton K, Hoffmann RG, 3rd, et al: Transplantation in children. A longitudinal assessment of mothers’ stress, coping, and perceptions of family functioning. Psychosomatics 38:478, 1997 14. Wray J, Radley-Smith R: Longitudinal assessment of psychological functioning in children after heart or heart-lung transplantation. J Heart Lung Transplant 25:345, 2006 15. Kazak AE, Kassam-Adams N, Schneider S, et al: An integrative model of paediatric medical traumatic stress. J Paediatr Psychol 31:343, 2006 16. Serrano-Ikkoos E, Lask B, Whitehead B, et al: Heart or heart lung transplantation psychosocial outcome. Paediatr Transplant 3:301, 1999 17. Rodrigue JR, MacNaughton K, Hoffmann RG, 3rd, et al: Perceptions of parenting stress and family relations by fathers of children evaluated for organ transplantation. Psychol Rep 79:723, 1996 18. Kazak AE, Alderfer M, Rourke MT: Post-traumatic stress disorder (PTSD) and post-traumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. J Paediatr Psychol 29:211, 2004 19. Stuber MI, Shemesh E, Saxe GN: Post-traumatic stress responses in children with life-threatening illnesses. Child Adolescent Clin North Am 15:597, 2006 20. Young GS, Mintzer LL, Seacord D, et al: Symptoms of post traumatic stress disorder in parents of transplant recipients: incidence, severity, and related factors. Pediatrics 111:725, 2003 21. De Maso DR, Kelley SD, Bastardi H, et al: The longitudinal impact of psychological functioning, medical severity and family functioning in paediatric heart transplantation. J Heart Lung Transplant 23:473, 2004 22. Farley LM, De Maso DR, D’Angelo E, et al: Parenting stress and parental post-traumatic stress disorder in families after paediatric heart transplantation. J Heart Lung Transplant 26:120, 2007 23. Stukas AA, Dew MA, Switzerge GE, et al: PTSD in heart transplant recipients and their primary family caregivers. Psychosomatics 40:212, 1999 24. Weiss D, Marmar C: The impact of event scale - revised. In Wilson J, Keane T (eds): Assessing Psychological Trauma and PTSD. New York: Guildford; 1997 25. Spielberger CD: State-trait anxiety inventory. Palo Alto: Consulting Psychologist Press; 1983 (Spielberger CD: Italian translation, In Pedrabissi L, Santinello M (eds): Organizzazioni Speciali Firenze, 1989