PTSD in solid organ transplant recipients: Current understanding and future implications.

PTSS are quite prevalent in transplant recipients, although full-scale PTSD may not be that common. Those symptoms have been linked to poor transplant outcomes, perhaps owing to non-adherence to medications and other recommendations, brought about by the avoidance dimension of the PTSD/PTSS construct (patients may avoid taking their medications because they serve as reminder of the emotionally traumatic event--the transplant). It is possible to treat PTSD via specific psychotherapeutic techniques, and the treatment has been shown to be safe and likely effective in other populations. Therefore, practitioners who treat transplant recipients should be familiar with the presentation and treatment of those symptoms. This manuscript provides a systematic literature review of the PTSD/PTSS presentation in the pediatric transplant setting, a synthesis of available research findings, and suggestions for current care and future research.

Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer.

PURPOSE/OBJECTIVES: To explore the relationship between posttraumatic stress disorder (PTSD) and quality of life (QOL)/psychological outcome in young adult survivors of childhood cancer. DESIGN: Cross-sectional, descriptive study. SETTING: A large comprehensive pediatric cancer center on the West Coast. SAMPLE: Fifty-one young adult survivors of childhood cancer, 18-37 years of age, disease free, and off treatment for an average of 11 years (range 2.8-26.7 years). METHODS: A structured clinical interview was used to establish a PTSD diagnosis. Self-report instruments were used to assess QOL (RAND SF-36) and psychological distress (Brief Symptom Inventory (BSI)). Survivors with and without PTSD were compared on the BSI and RAND SF-36. MAIN RESEARCH VARIABLES: PTSD status, QOL and psychological distress. FINDINGS: Eleven subjects (20%) met full criteria for PTSD. Significant group differences were found for 17 of the 18 outcome variables. Survivors with PTSD reported clinically significant levels of psychological distress, whereas symptom levels for those without PTSD fell well within population norms. On all domains, QOL scores were significantly lower for the PTSD group compared to the non-PTSD group. CONCLUSIONS: PTSD in survivors of childhood cancer is related to long-term outcome. PTSD is associated with a poorer QOL (physical and mental) and an increase in psychological distress. Data suggest that survivors with PTSD have significant functional limitations and psychological comorbidity. IMPLICATIONS FOR NURSING PRACTICE: Screening cancer survivors for PTSD will identify high-risk patients who need further evaluation and intervention.

A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients.

BACKGROUND: Symptoms of posttraumatic stress disorder (PTSD) were described in survivors of life-threatening diseases, the trauma being the experiences associated with the disease or its treatment. Their prevalence in liver transplant recipients is unknown. Based on clinical observations, we hypothesize that a significant proportion of pediatric liver transplant recipients suffers from PTSD symptoms. We further hypothesize that nonadherence (noncompliance) to medical management may, in some cases, be associated with these symptoms. Traumatized patients, according to this hypothesis, will avoid taking their medications, because these serve as painful reminders of the disease. OBJECTIVES: To determine the prevalence of PTSD symptoms in a sample of pediatric liver transplant recipients. To determine whether symptoms of PTSD are associated with nonadherence in these patients. To describe the clinical presentation of PTSD and the management of severe nonadherence in patients who suffer from this disorder. METHODS: Nineteen pediatric liver transplant recipients and their caretakers were interviewed, using the UCLA Post Traumatic Stress Disorder Reaction Index (PTSRI). Data were obtained on a few demographic parameters and perception of disease threat. Adherence was evaluated by 2 methods: 1) a clinician panel (taking into account the clinical sequelae of severe nonadherence); and 2) computation of the standard deviations (SDs) of consecutive determinations of blood levels of Tacrolimus (a higher SD means higher variability between individual measures and is therefore an indicator of nonadherence). As an illustration of the general phenomenon, we describe 3 cases of liver transplant recipients who were nonadherent and who suffered from PTSD. RESULTS: Six of 19 patients had positive scores on all 3 components of the PTSRI (PTSD patients). Three of these, and none of the others, were considered significantly nonadherent by the panel. Therefore, nonadherence was significantly associated with the existence of symptoms from all 3 domains of PTSD (Fisher's exact test) in our sample. In particular, a high avoidance score on the PTSRI was highly correlated with panel-determined nonadherence. Further, SD of medication levels were significantly higher in PTSD patients, compared with the rest of our sample. No significant differences were found in perception of disease threat or demographic variables between PTSD patients and the rest of our sample. The 3 cases that we describe became adherent to their medications when symptoms of PTSD subsided during the course of therapy. CONCLUSIONS: Clinically significant nonadherence, determined by 2 different methods, was associated with the full spectrum of PTSD symptoms in this sample. It was especially associated with a high avoidance score, which suggests that avoidance of reminders of the disease (eg, medications) may be a mechanism of nonadherence. Screening for and management of these symptoms, therefore, may improve adherence. This novel concept may be applicable to other patient populations. However, more data are needed before any definite conclusions can be drawn.

Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood.

Little research has been done to explore how the psychological symptoms of child and adolescent cancer survivors change in the decades following successful treatment. This article examines these changes with a focus on the utility of a posttraumatic stress framework for understanding the long-term coping issues that individuals face as they mature and make transitions to young adulthood. First, the literature supporting the use of a posttraumatic stress framework in child and adolescent survivors is reviewed. Developmental contributions to changes and increases in posttraumatic symptomatology during young adulthood are then discussed and posttraumatic symptoms most often seen in this group are presented. Preliminary research with young adult survivors is also reviewed and discussed as support for a posttraumatic stress framework with this population. Ongoing research efforts aimed at elaborating on this framework are described. Finally, clinical implications for health care providers are explored, and guidelines for assessing the impact of posttraumatic stress on young adults' use of health care resources are offered.

Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers.

OBJECTIVE: To predict posttraumatic stress symptoms in parents of survivors of childhood cancer, using as predictors the following: personality (trait anxiety); current family and individual variables (perceived life threat, perceived treatment intensity, life events, family functioning, and social support); posttreatment variables (time since treatment ended, child anxiety, medical sequelae); and treatment events (age at diagnosis, radiation therapy, intensity of treatment). METHOD: Mothers and fathers of 6- to 20-year-old survivors of childhood cancer (n = 331 families) completed a questionnaire battery in this two-site study. The outcome variable was the Posttraumatic Stress Disorder Reaction Index. Multiple regressions and path analyses were used to test the model. RESULTS: For both mothers and fathers, anxiety was the strongest predictor of posttraumatic stress symptoms. The current family and individual variables also contributed significantly, particularly with respect to the individual contributions of perceived life threat, perceived treatment intensity, and social support. Objective medical data did not contribute to posttraumatic stress symptoms. CONCLUSIONS: Parental anxiety warrants attention throughout the course of treatment for childhood cancer and after treatment ends. Beliefs about past and present life threats associated with cancer treatment and family and social support are other important targets for intervention.

Is posttraumatic stress a viable model for understanding responses to childhood cancer?

The application of a trauma model to understanding the impact of life-threatening illness has been informative. In the case of childhood cancer patients, it appears clear that a full PTSD syndrome is not the normative response either during or after treatment. Some aspects of cancer diagnosis and treatment, however, are experienced as traumatic by a subset of children, some of whom report symptoms of posttraumatic stress. There is some evidence that children may respond to cancer treatment as a repeated trauma, with the result of more subtle changes in affect modulation, world view, and interpersonal relationships. This area requires further investigation. The trauma model is also useful in understanding parental responses to childhood cancer. The epidemiologic data to date regarding posttraumatic stress symptoms in parents of childhood cancer survivors is consistent with the trauma literature regarding responses to moderate-magnitude traumatic exposure. These findings have important implications for clinical interventions for families of childhood cancer patients. More research is needed in the prediction and prevention of the long-term distress reported by so many parents of children who have undergone successful treatment for life-threatening illness.

Predictors of posttraumatic stress symptoms in childhood cancer survivors.

OBJECTIVE: The diagnosis and treatment of childhood cancer are extremely stressful experiences, with psychological sequelae which can persist many years after the end of treatment. This study investigated the relative contributions of general anxiety, treatment intensity, medical sequelae of treatment, and the subjective appraisal of life threat and treatment intensity to later posttraumatic stress symptoms, such as intrusive memories, avoidance, and hypervigilance. METHOD: One hundred eighty-six childhood cancer survivors ages 8 through 20 years, off of treatment for more than 1 year, and their parents completed questionnaires. Medical sequelae of treatment and intensity of treatment were rated by a pediatric oncologist. RESULTS: Significant, independent predictors of persistent posttraumatic stress symptoms included: 1) the survivor's retrospective subjective appraisal of life threat at the time of treatment, and the degree to which the survivor experienced the treatment as "hard" or "scary"; 2) the child's general level of anxiety; 3) history of other stressful experiences; 4) time since the termination of treatment (negative association); 5) female gender; and 6) family and social support. Mother's perception of treatment and life threat contributed to anxiety and subjective appraisal for the survivor, but did not independently contribute to posttraumatic stress symptoms. CONCLUSIONS: Symptoms of posttraumatic stress seem to decrease with time, but are persistent in a subset of childhood cancer survivors. Other than time and gender, the predictors of posttraumatic stress symptoms are primarily subjective factors (ie, anxiety and subjective appraisal) rather than objective stressors of treatment and medical sequelae.

The violence of despair: consultation to a HeadStart program following the Los Angeles uprising of 1992.

This paper describes an acute trauma consultation to one Los Angeles HeadStart program following the severe civil disturbance in the spring of 1992. By self-report, 7% (3/42) of the teachers had severe post-traumatic stress symptoms, and 29% (21/42) had moderate symptoms one month after the event. Teachers, comparing behavior following the disturbance to behavior two weeks before, reported statistically significant increases in the students' aggression and noise level, and decreases in "getting along" with peers and academic progress. Difficulties encountered in this type of community psychiatric consultation are discussed.

Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers.

Psychological sequelae are examined in 130 former childhood leukemia patients and 155 comparison participants and their parents. The major dependent variables are symptoms of anxiety and posttraumatic stress, family functioning, and social support. Multivariate analyses of covariance indicated significantly more posttraumatic stress symptoms in mothers and fathers of childhood leukemia survivors (p < .001) and no differences between survivors and peers. There were no significant group differences for family functioning or social support, although they were associated with anxiety and posttraumatic stress outcomes. Current child age, age at diagnosis, and months off treatment were not significantly correlated with outcome. These findings document the long-term impact of childhood cancer treatment on parents. The lack of significant differences for survivors argues for further attention to the relevance of posttraumatic stress disorder for childhood cancer survivors. The clinical implications are that psychological interventions are needed during and after cancer treatment.

Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children.

Compared posttraumatic stress symptoms in 309 8- to 20-year-old survivors of childhood cancer and their parents with healthy children and their parents who responded to child-related stressors. The relationship of child demographic, cancer and treatment, and family and social support factors with posttraumatic stress symptoms was analyzed also. Results indicate that mothers and fathers of childhood cancer survivors showed significantly higher levels of posttraumatic stress symptoms than comparison parents. The survivors themselves did not differ from their healthy counterparts. Past perceived life threat and family and social support resources contributed to posttraumatic stress symptoms in survivors and their parents. Survivor mother and child and survivor father and child symptoms were associated. Implications for the long-term functioning of families of survivors and suggestions for preventive interventions are discussed.

Appraisal of life threat and acute trauma responses in pediatric bone marrow transplant patients.

Although traumatic responses in children are well-documented following exposure to a variety of life-threatening circumstances, little is known about the subjective appraisal of children during the acute exposure. This paper presents both descriptive and quantifiable data regarding the responses of children during the acute phase of hospitalization for bone marrow transplantation, an extremely aggressive treatment for otherwise fatal illnesses. Children were able to appreciate the life-threatening nature of their illness and its treatment. They reported few symptoms consistent with a traumatic stress response. These findings are in contrast to recent data on survivors of childhood cancer, who generally report that they did not understand that their illness posed a threat to their lives, while reporting moderate levels of posttraumatic stress symptoms up to 10 years after completion of successful treatment. Implications of these findings are discussed.

Psychiatric sequelae in seriously ill children and their families.

Going through a life-threatening illness as a child or adolescent is a tremendously stressful experience for the entire family. Although the majority of survivors do go on to adjust and function well, some have ongoing problems. These problems include evidence of posttraumatic stress, learning difficulties, depression, and anxiety. Their parents appear to be even more severely affected, possibly because they had a better appreciation at the time of the true dangers posed by the illness and the treatment. Little is yet known about their siblings, although it is clear that the acute stage of illness and treatment effects the entire family. Areas needing study include the long-term sequelae on siblings of survivors, as well as a better understanding of the precipitants and mediators of the problems noted in survivors and parents. Only then can interventions and preventative measures be undertaken and tested. Also needed is a better understanding of the impact of cultural differences on precipitants, mediators, and symptoms.

Posttrauma symptoms in childhood leukemia survivors and their parents.

This study used a self-report measure of posttraumatic stress (the Posttraumatic Stress Disorder Reaction Index) to evaluate 64 pediatric leukemia survivors age 7-19 years and their parents (mothers n = 63, fathers n = 42). Based upon normative data for the Reaction Index, 12.5% of the survivors, 39.7% of the mothers, and 33.3% of the fathers reported symptoms consistent with a severe level of posttraumatic stress. The data indicate that a substantial subset of pediatric cancer survivors and their parents experience severe symptoms that can be understood within a posttraumatic stress model. The data are discussed with regard to pediatric follow-up care for cancer survivors, as well as in terms of preventive steps that could be taken to lessen the traumatic aspects of pediatric cancer treatment.

Transplant nurses: concerns and opportunities.

Nurses caring for patients undergoing liver transplants were surveyed to identify specific needs and concerns. Previously identified issues in regard to orthotopic liver transplantation also were addressed: high mortality rates, time-consuming care, emotional factors and ethical issues. Nurses need to be represented on selection and ethics committees and to participate in clinical decisions.

Psychiatric sequelae in adolescent bone marrow transplantation survivors : implications for psychotherapy.

Survivors of life-threatening pediatric illness and their families present a number of psychotherapeutic challenges. The authors present pilot data evaluating the long-term psychiatric impact of pediatric bone marrow transplantation on 10 adolescent transplantation survivors compared with a matched control group. On a quantitative assessment of posttraumatic stress symptoms, the survivors reported a consistent but low level of symptoms. Their narratives about the experience suggest the need for ongoing mental health assessment in addition to specific interventions with families early in the treatment.

Psychiatric aspects of organ transplantation in children and adolescents.

Organ transplantation has become the treatment of choice for a number of life-threatening childhood illnesses. This article explores four psychiatric issues raised by pediatric transplantation: 1) the role of the family, 2) the context of the illness, 3) developmental issues, and 4) long-term effects. The effects of these issues on children before, during, and after the transplant hospitalization are reviewed, with suggestions for clinicians and researchers working in this challenging new area.

Stress responses after pediatric bone marrow transplantation: preliminary results of a prospective longitudinal study.

This paper reports the preliminary findings of a longitudinal prospective study of young children undergoing bone marrow transplantation. Symptoms of post-traumatic stress were seen in these children up to 12 months after transplant. The bone marrow transplantation survivors demonstrated more denial and avoidance and fewer arousal symptoms than has been noted in children traumatized by a violent life threat, such as a sniper attack. These data suggest the use of post-traumatic stress as a model in understanding some of the symptoms of pediatric bone marrow transplantation survivors and may be applicable to other children exposed to the double life threat of serious illness and intensive medical intervention.

"Never been done before"--consultative issues in innovative therapies.

The transition of a medical or surgical procedure from impossible to standard therapy requires a stage of experimentation, during which research priorities must be balanced with the interests of the patient. This paper examines such a "first case," and the interpersonal and group dynamics that play a part in the choice of a specific patient to be the first to receive that procedure.

Children, adolescents and AIDS.

HIV-1 and AIDS are emerging as significant problems for medical and mental health professionals working with children, adolescents, or women of child-bearing age. Aggressive medical care, and new research advances are allowing infected individuals to live longer. However, prevention remains the only way to save lives. Developmentally informed and culturally sensitive psychiatric input is needed to 1) facilitate coordinated care of children and mothers, 2) shape educational programs which can effect behavioral change, targeting children, adolescents, Latinos, and African-American women, and 3) work with children, their families, and their communities to combat stigma and secrecy. Although the obstacles often appear overwhelming, pediatric AIDS invites clinical and research involvement to prevent what cannot yet be cured.