Educational, occupational, and insurance status of childhood cancer survivors in their fourth and fifth decades of life.

PURPOSE: Survivors of childhood cancer who are now greater than or equal to 30 years of age are available for study in significant numbers for the first time. An evaluation of their educational achievement, current employment status, frequency of problems in the work-place, and ability to obtain affordable health and life insurance was the aim of this study. PATIENTS AND METHODS: This was a case-control study of 219 childhood cancer survivors with individually matched controls from two tertiary-care pediatric centers. Telephone interviews were used and drew on a 356-item basic instrument for both subjects and controls. Medical (including intensity of therapy), marital, and psychosocial areas were included in the survey, but statistical comparisons concentrated on educational and economic issues. RESULTS: The overall current status of survivors and controls in the relevant areas, ie, education, employment, and insurance, was similar. A history of employment discrimination for entry into the uniformed services and in other special situations, and life insurance discrimination during the initial years after the completion of therapy was noted. Survivors experienced few problems in the work-place. Survivors of CNS tumors were unique, with problems in many of the areas studied, although there were notable individual exceptions. CONCLUSION: With the exception of those individuals with CNS tumor histories, survivors who were treated in the era of 1945 to 1975 had few economic sequelae of cancer or its therapy that extended beyond the first decades after treatment.

Symptoms of posttraumatic stress in young adult survivors of childhood cancer.

PURPOSE: This study assessed the prevalence of posttraumatic stress symptoms in young adult survivors of childhood cancer and the association of posttraumatic stress with anxiety, adjustment, perceptions of illness and treatment, and medical data extracted from oncology records. PATIENTS AND METHODS: Seventy-eight young adults (ages 18 to 40 years) who had been treated for childhood cancer completed questionnaires and psychiatric interviews assessing posttraumatic stress, anxiety, perceptions of their illness and treatment, and symptoms of psychologic distress. Data on treatment intensity and severity of medical late effects were collected via chart review. RESULTS: Of the patient sample, 20.5% met American Psychiatric Association Diagnostic and Statistical Manual criteria for posttraumatic stress disorder (PTSD) at some point since the end of their treatment. Clinically significant levels of intrusive (9%) and avoidant (16.7%) symptoms were reported. Participants also reported elevated state and trait anxiety. Participants with PTSD reported higher perceived current life threat, more intense treatment histories, and higher (and clinically significant) levels of psychologic distress than those who did not have PTSD. CONCLUSION: One-fifth of this sample of young adult survivors of childhood cancer met criteria for a diagnosis of PTSD, with clinically significant symptoms of intrusion and avoidance reported. As in other samples, PTSD in young adult survivors was associated with anxiety and other psychologic distress. Survivors' perceptions of treatment and its effects were more highly associated with posttraumatic stress than were more objective medical data. The data suggest that cancer-related posttraumatic stress may emerge in young adulthood and may affect the achievement of developmental milestones and orientation toward health care.

Late mortality experience in five-year survivors of childhood and adolescent cancer: the Childhood Cancer Survivor Study.

PURPOSE: Survivors of childhood and adolescent cancer are at risk for long-term effects of disease and treatment. The Childhood Cancer Survivor Study assessed overall and cause-specific mortality in a retrospective cohort of 20,227 5-year survivors. PATIENTS AND METHODS: Eligible subjects were individuals diagnosed with cancer (from 1970 to 1986) before the age of 21 who had survived 5 years from diagnosis. Underlying cause of death was obtained from death certificates and other sources and coded and categorized as recurrent disease, sequelae of cancer treatment, or non-cancer-related. Age and sex standardized mortality ratios (SMRs) were calculated using United States population mortality data. RESULTS: The cohort, including 208,947 person-years of follow-up, demonstrated a 10.8-fold excess in overall mortality (95% confidence interval, 10.3 to 11.3). Risk of death was statistically significantly higher in females (SMR = 18.2), individuals diagnosed with cancer before the age of 5 years (SMR = 14.0), and those with an initial diagnosis of leukemia (SMR = 15.5) or CNS tumor (SMR = 15.7). Recurrence of the original cancer was the leading cause of death among 5-year survivors, accounting for 67% of deaths. Statistically significant excess mortality rates were seen due to subsequent malignancies (SMR = 19.4), along with cardiac (SMR = 8.2), pulmonary (SMR = 9.2), and other causes (SMR = 3.3). Treatment-related associations were present for subsequent cancer mortality (radiation, alkylating agents, epipodophyllotoxins), cardiac mortality (chest irradiation, bleomycin), and other deaths (radiation, anthracyclines). No excess mortality was observed for external causes (SMR = 0.8). CONCLUSION: While recurrent disease remains a major contributor to late mortality in 5-year survivors of childhood cancer, significant excesses in mortality risk associated with treatment-related complications exist up to 25 years after the initial cancer diagnosis.

Multiple sclerosis in mothers of children with acute lymphoblastic leukemia.

The Childrens Cancer Study Group used data from a self-administered questionnaire to compare the observed and expected frequencies of multiple sclerosis (MS) in the parents of 1,027 children with acute lymphoblastic leukemia (ALL), 2,053 parents of children with other cancers, and in parents of 838 children without cancer. There were significant excesses seen for mothers of children with ALL (relative risk, RR = 4.0, p = 0.02), but no excess was found for acute nonlymphoblastic leukemia or lymphoma. There was no increase risk of MS for the fathers of these children.

Epidemiological characteristics of childhood acute lymphocytic leukemia. Analysis by immunophenotype. The Childrens Cancer Group.

While a number of epidemiological studies of childhood acute lymphocytic leukemia (ALL) have been conducted, separate analysis of risk factors for ALL subtypes has generally not been possible. We report the results of an analysis of data obtained from parents of children with ALL (and a control group of children without cancer), linked to a clinical database. Cases were classified into four ALL subtypes, and odds ratios (OR) were determined for each subtype for a broad range of factors. Numerous significant associations were found, some across all subtypes and others that were subtype-specific. Factors with elevated and/or significant ORs included: (i) for common ALL (n = 286): Down syndrome; family history (FH) of bone/joint diseases; postnatal jaundice; birthweight; MMR vaccination; exposure to gases and insecticides; and parental occupational exposure to insecticides. (ii) for pre-B ALL (n = 38): FH of gastrointestinal, hematological or bone/joint diseases, or allergy; cat ownership; exposure to solvents, fumes, petroleum products, cleaning agents and farm animals; and parental exposure to farm animals, fumes and solvents; (iii) for T-cell ALL (n = 158): FH of gastrointestinal disorders, maternal age, male gender, and parental occupational exposure to metals; (iv) for null-cell ALL (n = 65): FH of congenital heart disorders; measles; and parental occupational exposure to fumes, metals or solvents. This analysis should be considered as a hypothesis-generating process for future case-control interview studies.

Management of cutaneous reactions and mechanical complications of central venous access devices in pediatric patients with cancer: algorithms for decision making.

Surgically placed central venous catheters (CVCs) facilitate the delivery of medication and nutrition support for patients with malignant disease. There is little information regarding allergic reactions to materials used for standard CVC care or about mechanical complications associated with CVC use. This study describes allergic and mechanical complications that occurred in a series of 288 CVCs implanted in 238 pediatric patients with malignant disease. There were 20 episodes of cutaneous reactions to standard central line dressing care (alcohol/povidone-iodine/TegadermTM), 13 incidents of catheter exit site infections, and 14 experiences of mechanical breakage in external CVCs. Complications were managed from algorithms that provided a systematic sequence of nursing interventions for alternative catheter dressing techniques and line repair. Only two CVCs were removed because of progressive infection, and one catheter was removed because of occlusion after repair.

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.

Wilms' tumor: a paradigm, a parallel, and a puzzle.

Wilms' tumor, a childhood tumor of the kidney, parallels retinoblastoma in several ways. Both malignancies occur in the very young, involve paired organs, arise from embryonal cells, can develop unilaterally or bilaterally, and can occur in hereditary and non-hereditary forms. However, Wilms' tumor rarely occurs in family clusters and may involve the loss of function of multiple genes.

Pediatric oncology nursing in cooperative group clinical trials comes of age.

OBJECTIVES: To provide a review of the nursing committees in both the Children's Cancer Group and the Pediatric Oncology Group and discuss intergroup nursing research collaboration in preparation for the merger of these cooperative clinical trials groups. DATA SOURCES: Review articles, reports, and newsletters from cooperative clinical trials groups. CONCLUSIONS: Nurses have established a vital presence in the pediatric cancer cooperative groups over the past 20 years through education, clinical practice, and collaborative research. IMPLICATIONS FOR NURSING PRACTICE: With the unification of the pediatric cooperative groups into the single Children's Oncology Group, the time is uniquely right to build a program of nursing research allied with pediatric oncology cooperative group clinical trials.

An overview of cancer in children in the 1980s.

Multidisciplinary teams, therapeutic research, and large successful clinical trials have led to the exciting improved survival outlook in pediatric oncology. The development of sophisticated supportive care measures and the identification of significant prognostic variables within disease categories have dramatically altered the management and outcome for many children with cancer. Prolonged survival has focused attention on the quality of life and strategies to enable these children and their families to cope effectively with chronic, life-threatening illness. Research is ongoing on several fronts: to find innovative treatment approaches for children who currently have a poorer prognosis, to minimize or prevent acute and late toxicities by modifying treatment plans so less intensive treatment can be given to patients with a low risk of disease recurrence, and to increase our understanding of the epidemiology and etiology of childhood cancer. With the continued efforts of researchers in the laboratory and at the bedside, prevention of these catastrophic diseases may some day become a reality.

Cancer and genetics: what we need to know now.

Profound changes brought about by discoveries in molecular biology may enable us in the future to treat cancer without causing late effects or to prevent cancer altogether. Even before that happens, the age of molecular medicine has arrived. Molecular biology is the study of biological processes at the level of the molecule. A major aspect of molecular biology is molecular genetics--the science that deals with DNA and RNA. Most of the progress in molecular biology has been made in the second half of the 20th century. Each discovery or technological innovation has built on previous discoveries and paved the way for the next, culminating in the current effort to map, sequence, and understand the functions of the entire human genome. In the past 20 years, many pieces of the cancer puzzle have been found, showing us how the normal cellular control mechanisms go awry to cause cancer and setting the stage for genetic testing and disease treatment. These new discoveries bring both promise and peril. To provide comprehensive care for survivors of childhood cancer and care in other settings as well, health care providers must now be familiar with the concepts and language of molecular biology, understand its applications to cancer care, and be fully informed about its implications for clinical practice, research, and education.

A phase II study of diaziquone in childhood leukemia: a report from the Children's Cancer Study Group.

Diaziquone (aziridinylbenzoquinone, AZQ) was given by 30-min infusion at 25 mg/m2/day on a daily x 5 schedule to 16 children with acute lymphoblastic leukemia (ALL) in bone marrow relapse, 16 children with acute nonlymphocytic leukemia (ANLL) in bone marrow relapse, and 1 child with chronic myelocytic leukemia in blast crisis. None of the children achieved bone marrow remission. Five children (four with ALL and one with ANLL) were also evaluable for the response of central nervous system leukemia; all had a significant reduction in the cerebrospinal fluid blast count. Mild transient transaminase elevation was commonly seen. Grade 3 and 4 hyperbilirubinemia was seen in association with sepsis. AZQ was ineffective for induction of bone marrow remission as utilized in this study.