Health‐related quality of life after pediatric heart or heart–lung transplantation: Where do we go from here?

The work of Wray and Radley-Smith (1) provides an important focus on the cognitive and behavioral functioning of pediatric heart or heart–lung transplant patients longitudinally after transplant. Assessments were completed at 12 and 24 months using standardized measures, with information obtained from the medical record, children, parents, and teachers. Findings were interpreted to suggest that a significant minority of children and adolescents post-transplant experience cognitive and behavioral problems, with younger children being the most vulnerable to cognitive declines, and a pattern of increasing behavioral difficulties at home contrasting with a decline in behavioral difficulties at school. There are numerous strengths that distinguish this research. The use of standardized measures with known psychometric qualities along with collection of data from multiple sources are positive aspects of the research. Additionally, considerable care was taken to identify all eligible patients and meticulously report recruitment statistics for the patient and comparison groups. Much effort went into the process of following these patients longitudinally with solid retention statistics. In sum, this work represents a laudable effort that provides the reader with some important data regarding quality of life for transplant survivors. It is only recently that significant numbers of survivors of pediatric heart transplant have been available for study, and systematic study of the psychological sequelae of this procedure are just beginning. Much of the prior work in this area has been anecdotal, necessitated by the relatively small numbers of children. The paper of Wray and Radley-Smith (1) represents one of the few empiric research efforts to date. Although their study is characterized by many strengths, and represents an advance over previously published work, it is typical of early research in a new field, being largely descriptive and marked by several limitations in methodology and design that diminish the potential clinical contribution of these data. Wray and Radley-Smith (1) have provided an important first step, and our focus here on some of the limitations of their work is provided to point the field towards the next logical research steps. The framework for this discussion is towards clinical relevance and improved theory regarding the impact of traumatic life events on children and families. First, while this work does identify some psychological domains that may be adversely affected for survivors of transplant, the domains that are assessed are quite broad. Identification of specific areas of cognitive, emotional, social, or externalizing problems are a logical first step that may lead to randomized clinical trials. General domains of difficulty limit the ability of subsequent work to hone in on specific problems. For example, recent work by Butler and Copeland (2) has moved from identification of specific cognitive deficits in cancer survivors to a behavioral program of remediation. Before any intervention could be initiated, very specific deficits needed to be identified. In this case, considerable work had suggested that long-term cancer survivors exposed to cranial radiation and/or intrathecal drugs had problems with attention and concentration (3). Clinical trials of cognitive remediation are underway targeting these difficulties. Second, even more problematic is the lack of focus on pathways linking the transplant experience to difficulties. While some effort was expended to determine whether medical variables Pediatr Transplantation 2005: 9: 134–137. DOI: 10.1111/j.1399-3046.2005. 00294.x