Year : 2019 | Volume
: 3 | Issue : 1 | Page : 8--13
Psychological issues in pediatric organ transplantation
Dinesh Saroj1, Sagar Karia2, Avinash De Sousa2,
1 Department of Pediatrics, Lokmanya Tilak Municipal Medical College, Mumbai, Maharashtra, India
2 Department of Psychiatry, Lokmanya Tilak Municipal Medical College, Mumbai, Maharashtra, India
Dr. Avinash De Sousa
Carmel, 18, St. Francis Road, Off S.V. Road, Santacruz West, Mumbai - 400 054, Maharashtra
Pediatric organ transplantation (POT) has shown enormous development in the past few decades, and the number of POT has increased exponentially. While the various medical issues in pediatric transplantation have been discussed, there is a dearth of literature on the psychological issues surrounding POT. The present review aims at providing an overview on various psychological issues that surround POT. Literature search using search engines was carried out, and review papers and original research articles were analyzed. The overall role of the psychiatrist in the POT setup is discussed and issues such as depression and anxiety that may occur in children and their parents is elaborated. The neurocognitive changes that may occur in POT are also discussed and the need for regular monitoring is stressed. Special population such as developmental disabilities and human immunodeficiency virus infection in the organ transplant setting and specific issues related to them are discussed. The role of a child and adolescent psychiatrist as an invaluable asset to any POT team is discussed and deliberated. Multiple psychological facets that may be encountered while dealing with children and adolescents undergoing organ transplantation are discussed.
|How to cite this article:|
Saroj D, Karia S, De Sousa A. Psychological issues in pediatric organ transplantation.Ann Indian Psychiatry 2019;3:8-13
|How to cite this URL:|
Saroj D, Karia S, De Sousa A. Psychological issues in pediatric organ transplantation. Ann Indian Psychiatry [serial online] 2019 [cited 2023 Mar 27 ];3:8-13
Available from: https://www.anip.co.in/text.asp?2019/3/1/8/251363
The field of pediatric organ transplantation (POT) has shown enormous development in the past few decades. It represents the most successful landmark in the field of pediatrics, highlighting the importance of multidisciplinary approach in patient care. The concept of organ transplantation dates back to ancient times and is shown to exist in medical records as early as 600 BC. POT has now increased in medical care and is one of the most commonly methods in the management of end-stage medical disease, improving survival and life expectancy in up to 80% of patients. The outcomes of POT have improved in leaps and bounds in terms of years of survival, but many issues still persist. The present review aims at providing an overview on various psychological issues that surround POT.
Method of Conducting This Review
For identifying articles that focused on POT and its psychological issues, the terms “psychological aspects and pediatric organ transplantation,” “psychological issues in pediatric organ transplantation,” “assessment of pediatric organ transplant patients,” “psychological problems after pediatric organ transplantation,” or “psychiatric disorders in pediatric organ transplant patients” were used. For identifying articles that focused on specific problems terms such as “depression and pediatric organ transplant,” “anxiety and pediatric organ transplant,” “non adherence and pediatric organ transplant,” and other terms were used. These two search strategy results were combined with an “and” statement in the databases with the time frame being specified from 1980 to 2016. The databases used were Medline, PubMed, Google Scholar, and the Cochrane Database of Systematic Reviews. In total, 77 articles were identified which included reviews, original research papers, and case series or case reports on the issues of psychological problems in POT in particluar and organ transplant in general. The research papers reviewed here were centered on addressing POT. We included studies with sample sizes of more than 30 participants with either mean scores or percentages with appropriate statistical analysis for writing this paper and using data. There were some studies with fewer participants and a qualitative nature that were also reviewed for this paper. All the authors reviewed the papers and the most relevant ones were chosen for this review. The papers reviewed in this article include original research papers (27 papers), case studies (19 papers), and reviews (31 papers). Not all were relevant and were not included in the references of this paper. This was further supplemented with the personal clinical experience of all the authors in this field who work regularly with pediatric patients in an organ transplant unit which is located in a tertiary general public hospital where the authors work in Mumbai since 2009 and on an average 6–8 pediatric transplantations in a year and where a dedicated psychiatric assessment done for every patient. All authors (one pediatrician and two psychiatrists) thus have further insight into the problems faced by this special patient group. All the authors are working in a tertiary general hospital and medical college where there is a consultation–liaison between different pediatric departments and the psychiatry department on a regular basis for the management of various problems related to the pediatric population. It was noted by the authors that there is dearth of literature on this topic and hence the need arose to perform the present review.
Facts About Pediatric Organ Transplantation
The success of clinical allograft transplantation began with transplantation of kidneys between identical twins by Murray et al. at Peter Bent Brigham Hospital in Boston in 1956 while the first pediatric heart transplant was done in 1967., In 1963, Thomas Starzl performed the first liver transplantation in a 2-year-old child with biliary atresia.
Renal transplants were the earliest of the solid organ transplants to be successful, and they continue to have the best long-term survival. Today, the 5-year survival for pediatric kidney transplants is over 90%. A 5-year survival rate for a child and for a young adult is almost the same, but the waiting period for a matched organ may be longer for young children. Young children often fare better, perhaps in part due to reduced incidence of acute and chronic rejection. The majority of pediatric liver transplants occur in children below 5 years of age, mostly in case of congenital illness such as alpha-1-antitrypsin deficiency or biliary atresia while cardiomyopathy is the most common indication for heart transplantation in older children and adolescents.,
Role of a Psychiatric and Psychological Assessment in Pediatric Organ Transplantation
All POT patients and especially adolescents require referral to a psychiatrist for assessment prior to and during the organ transplantation process. The suitability for transplantation can be evaluated by a psychiatrist, who also may serve to determine the chances of nonadherence to the medical instructions, which is one of the most complicated problems in all types of pediatric transplants. Children may be incapable of understanding the process of organ transplantation and may thus not comply with treatment requiring counseling and basic help in that area. Parents may also need help in dealing with their children during this tough phase. Through appropriate counseling and medical support, if needed, the psychiatrist can help ensure proper treatment adherence, prevent the development of depression and anxiety, and can help monitor any psychological problems that may ensue posttransplant and due to medications such as immunosuppressants (which may be used in the management).
Common Psychological Issues That Arise in Pediatric Organ Transplantation
It is imperative to mention that POT recipients may have psychological problems similar to what may develop in children that have chronic medical illness. Psychological problems have been noticed in children who have received liver transplants and psychiatric/psychological assessments reveal better adjustment results for those with renal transplants., Each and every member of the family gets profoundly affected by the organ transplantation process, and the parents must be encouraged to openly communicate on various issues with their children in an age-appropriate manner. The style of communicating the facts about transplantation to a child should be appropriate to his developmental stage. It is also important to understand that children with preexisting psychological problems may undergo organ transplantation and may need active management of their problems throughout the organ transplantation process.
Anxiety is common in children before, during, and after the organ transplantation. The long hospital stay and the surgery procedure may itself evoke anxiety in the mind of a child who is unaware of the gravity of his problem as well as the complexity of the organ transplantation process. There is no difference in anxiety experienced with relation to the organ involved in the transplant. No significant differences were found between primary caregivers of 170 pediatric liver, heart, and kidney transplant recipients as compared to healthy comparison groups in terms of anxiety or depression. Transplantation prolongs life but at the same time raises many stressors such as uncertain waiting time, financial burden on the family, reduced socialization for the child, missing school and academics, and prolonged hospital stays with social isolation. The family members are subjected to significant stress in case of nonavailability of donor organ for transplantation and the financial bearings that come therewith. Greater the urgency for transplantation more is the level of anxiety among family members of losing their child. In a study, it was noted that 65.7% parents of POT patients had psychological problems. Of these, 18.4% were found to have depression and 47.3% were diagnosed with anxiety disorders. Children who are undergoing an organ transplant may develop anxiety, worry, nightmares, and panic attacks that may warrant psychiatric help.
Depression in children is different clinically when compared to adults. Children may not be able to express depressed feelings, and as a result, the diagnosis may be missed. The child may have crying spells and decreased sleep with increased irritability which may in fact be a manifestation of an underlying depression. Depression may also result due to long hospital stays, immunosuppressant therapy, and missing out on regular social activity. POT, leading to the loss of a child, can have a devastating impact on psychological and physical health of parents. The death of a child is one of the most important causes of depression among parents and a child with terminal liver disease requiring transplantation significantly adds to their stress levels. A quick and successful transplant can help avoid abandonment by parents. In addition, psychological interventions are needed to help the parents deal with their guilt, anger, and helplessness during the transplant process and to manage their emotions while dealing with the child.
Preoperative and Postoperative Anxiety
During the preoperative period, both the parents and children exhibit significant psychological difficulties and confusion. The mood disorders among caregivers, the level of care for child, and the emotional support from family determine the course of disease in children. Hence, early detection of psychiatric conditions helps in early intervention. Postoperative management is a success-defining attribute of the transplant procedure including immunosuppression therapy. Appropriate psychological interventions help in relieving anxiety in both child and parents, thereby reducing the need for medications. Posttransplant phase of about a year is quite difficult for children and parents as they require daily medications, regular doctor visits, and care regarding exposure to infectious disease. Many of them get hospitalized during the year after transplantation as they might experience at least one episode of rejection while the immunosuppressant is being titrated. Management of anxiety that the child may undergo in this phase is vital in improving the long-term quality of life of the child.
Management of Depression and Anxiety
The management of depression and anxiety in children undergoing transplantation would involve a two-pronged approach that would focus on medical management combined with psychological management and psychoeducation of the family members. The medical management would involve the use of antidepressant drugs such as SSRIs and low-dose benzodiazepines for a short duration to alleviate anxiety. This would be done keeping in mind the other medications that the patient is on and the possibility of drug interactions and the compromised state of the individual. Psychological management would include relaxation training, counseling, and general psychotherapeutic approaches along with a detailed discussion with family members on how to cope with this depression and anxiety and their role and method of managing the child or adolescent involved.
Organ Loss and Children
Although not all children may be mature enough to understand the concept of organ loss, some children may manifest the same in varying manners. Children may develop somatoform symptoms such as giddiness, headache, vomiting, and abdominal pain in relation to the transplant process which may be their psychological way of dealing with organ loss. Adolescents may develop depression in relation to organ loss and body image problems related to the scar of surgery and loss of an organ that may warrant psychological attention.
Pediatric patients are always a vulnerable group when it comes to organ transplantation. This is so because they undergo procedures and lose organs or have them replaced while the consent for the same is given by their parents and family members. Many children below the age of 12 may not understand the gravity of the procedure they are undergoing and may not be mentally ready to face the consequences of organ transplantation.
The notion of organ loss and removal of an organ may be traumatic to the pediatric client and may be as traumatic as early adversity or abuse. Pediatric patients are never prepared for the surgery and never spoken to about the procedure they are undergoing. They may not be ready to face the long-term consequences of organ transplantation such as organ failure and bodily rejection of the transplanted organ.
Repeated surgeries that may arise out of this may trouble the patient. The pediatric patient may be uncooperative for repeated invasive procedures and may have anxiety before the surgery and at the sight of blood or injury. Fear of death may also be common in children that are undergoing major surgery or transplantation, and proper counseling is needed to allay these fears. Many children may have prolonged hospitalization, and this may lead to them missing school and thus may cause anxiety and worry about the same.
Many children may have restricted lifestyles post the transplantation and may not be allowed to go out and enjoy themselves in view of immunosuppressive treatments that they may be on. Diets of children may be rigid and this may lead to feelings of depression that may creep in. The child may realize that an organ is removed from his body and the concept of organ loss causes a feeling of anxiety and body image issues in children and adolescents that may perceive themselves to be inadequate and may develop body image and self-esteem issues if not addressed adequately before the transplant.
Neurocognitive Changes Posttransplantation in Children
Studies on POT recipients advocate that the neuropsychological sequelae of renal, cardiac, or liver failure may not be reversible. In a review, school-aged kidney-transplant recipients reported to have normal intelligence, but gross and fine motor skills of these children were impaired significantly, whereas 27% of liver transplant recipients with a history of chronic liver disease had below normal intelligence scores. Twenty-six children who underwent bone marrow transplantation were also given developmental evaluations 3 years post the procedure. Although intelligence quotient (IQ) and social behavior scores at 1-year follow-up was significantly lower than the baseline, no further changes were evident at the 3-year follow-up evaluation. A battery of intelligence, achievement, problem-solving, learning, memory, and attention tasks were administered to children that underwent renal transplant. Both groups had significantly improved scores over time on most measures. According to a study, a mean IQ score of pediatric heart transplant recipients was 86.7. 46% of these children had low scores on expressive language domain, 63% presented with visual-motor deficits, whereas 48% had fine motor deficits. These deficits present as academic difficulties in school, both before and after the transplant. Thus, neurocognitive monitoring is a must in all children and adolescents that undergo transplant at periodic intervals.
Special Pediatric Populations Undergoing Transplantation
There are many ethical and psychosocial dilemmas that arise when a child undergoing transplant has mental retardation or intellectual impairment and/or autism. A common misconception prevails regarding children with intellectual disability that they cannot manage the postoperative treatment schedule and are less likely to benefit from the transplant. Some presume that these children have lower quality of life, or they cannot give informed consent for transplantation. Another issue is whether these children will show further intellectual deterioration posttransplant, but research has not yet focused on these issues. Deficits in social interaction and communication or lack of social motivation may pose difficulty in establishing direct communication between the child and the team, thereby affecting their management in pre- and post-transplantation period. Taking into consideration the medical needs of these children, it may be difficult to establish a routine. Moreover, the existing pertinent sensory issues in a child with autism may pose problem with utilization of medical services. These children may require assistance with activities of daily living, both during hospitalization, and posttransplant facilities should frame exclusive protocols for managing children with special needs which include special accommodations as well as multidisciplinary care during hospitalization. Success of transplant in these children depends upon their ability to tolerate (daily) physically invasive procedures and unpredictable changes in routine. Furthermore, the child's and family's ability to adhere to treatment regimens decide the final outcome. The preoperative, perioperative, and long-term postoperative stages of organ transplantation can present different psychosocial obstacles for families.
Children With Human Immunodeficiency Virus Infection and Transplantation
Pediatric patients with human immunodeficiency virus (HIV) infection are at risk for end-stage organ disease and may need an organ transplant. Children with HIV have experienced significant improvements in morbidity and mortality with the emergence of anti-retroviral therapy. Thus, slowly a number of HIV-infected children and adolescents may be potential candidates for transplantation. Data on the psychological issues during transplantation in children with HIV infection are scarce, and the long-term outcomes of transplant are mixed. Encouraging anecdotal preliminary data is now emerging in this area. There is a psychological need to monitor this special group and parents as well as staff in the transplant center may need to be sensitized to the needs of this group.
Issues for the Consultation–liaison Child Psychiatrist
The consultation–liaison child psychiatrist is usually familiar to most of the psychiatric and psychological issues that may arise in the pre- and post-transplant phase of care. His/her role may range from just basic counseling and psychoeducation to the use of medication when needed. He/she should be aware of drug–drug interactions between various psychiatric medication and drugs used in transplant care. He/she shall need to be in good rapport with the transplant team to execute his treatment plan effectively and may also need to sensitize the transplant doctors in certain aspects of emotional handling and communication with the child and his family. A holistic multidisciplinary team approach shall play a major role in successful transplant outcome and better posttransplant care.
POT has become highly successful for children with life-threatening illnesses such as kidney, liver, or heart failure. The psychiatrist can play a vital role in selection of candidates, extending support to the family during transplant process, improving candidate adherence to the treatment and attending posttransplant issues such as anxiety and depression. The facility of transplantation is now available at many major hospitals, and the child and adolescent psychiatrist need to maintain a clear understanding of the developmental stage and family dynamics involved during the transplantation, the influence of immunosuppressive drugs on mood and cognition and the psychological approaches to the pediatric transplant recipient. The child and adolescent psychiatrist shall be an integral member of any POT team and shall play a major role in the enhancing (albeit indirectly) both immediate and long-term transplant outcomes.
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Conflicts of interest
There are no conflicts of interest.
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