Shelly Lensing

Quality of life as conveyed by pediatric patients with cancer

Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included first-hand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8–15 years) participated in the first, a cross-sectional study; and 13 patients (aged 10–18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.

Prophylactic antibiotics reduce morbidity due to septicemia during intensive treatment for pediatric acute myeloid leukemia

The aim of this study was to determine whether antibiotic prophylaxis during periods of neutropenia reduced streptococcal (S. viridans) sepsis and overall bacterial sepsis.

Prognostic factors and outcome of recurrence in childhood acute myeloid leukemia

Outcome after recurrence of childhood acute myeloid leukemia (AML) is poor. We performed this study to identify prognostic factors for recurrence and for survival after recurrence of AML.

Marriage, employment, and health insurance in adult survivors of childhood cancer

IntroductionAdult survivors of childhood cancer are at risk for disease- and therapy-related morbidity, which can adversely impact marriage and employment status, the ability to obtain health insurance, and access to health care. Our aim was to identify factors associated with survivors’ attainment of these outcomes.MethodsWe surveyed 1,437 childhood cancer survivors who were >18xa0years old and >10xa0years past diagnosis. We compared our cohort’s data to normative data in the Medical Expenditure Panel Survey and the U.S. Census Bureau’s Current Population Surveys. Respondents were stratified by hematologic malignancies, central nervous system tumors, or other solid tumors and by whether they had received radiation therapy.ResultsMost respondents were survivors of hematologic malignancies (71%), white (91%), and working full-time (62%); 43% were married. Compared with age- and sex-adjusted national averages, only survivors of hematologic malignancies who received radiation were significantly less likely to be married (44 vs. 52%). Full-time employment among survivors was lower than national norms, except among survivors of hematologic malignancies who had not received radiation therapy. The rates of coverage of health insurance, especially public insurance, were higher in all diagnostic groups than in the general population. While difficulty obtaining health care was rarely reported, current unemployment and a lack of insurance were associated with difficulty in obtaining health care (Pu2009<u20090.05 and Pu2009<u20090.001, respectively).Conclusions/Implications for Cancer SurvivorsSubgroups of cancer survivors do experience long-term differences in functional outcomes that should be addressed early. Survivors who are unmarried, unemployed, and uninsured experience difficulty accessing health care needed to address long-term health concerns.

Acute health-related quality of life in children undergoing stem cell transplant: I. Descriptive outcomes.

There has been little empirical documentation of the acute effects of bone marrow or stem cell transplant (BMT) on children. In the present study, the responses of 153 children undergoing BMT were assessed in a prospective, longitudinal design. Children were assessed at the time of admission for transplant, then underwent weekly assessments to week +6, followed by monthly assessment to month +6. Data were obtained both by parent report and patient report (for patients age 5 and up) using the BASES scales. The major findings are: (1)u2009children undergoing BMT enter the hospital with an already heightened level of distress (defined by high levels of somatic symptoms and mood disturbance, and low levels of activity) that increases dramatically following conditioning, reaching a peak approximately 1 week following transplant; (2)u2009this increased distress is transient, declining rapidly back to admission levels by week +4 to week +5, followed by a further decline to presumed basal levels by months 4–6; and (3)u2009the trajectories of distress depicted by both parent and child report are remarkably similar, each providing confirmatory support for the validity of the findings. These findings confirm a number of widely held clinical impressions that had not previously been documented empirically, and point to the need for new interventions or more intensive approaches to supportive care aimed at reducing levels of distress during the acute phase of transplant.Bone Marrow Transplantation (2002) 29, 425–434. doi:10.1038/sj.bmt.1703377

Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer

IntroductionAttendance at long-term follow-up clinic is necessary for survivors of childhood cancer to facilitate education about cancer-related health risks, early detection of treatment-related morbidity, and implementation of health-promoting interventions. Despite the need for continued care, barriers to clinic attendance exist. The purpose of this prospective study was to identify the demographic, medical, and logistic factors impacting clinic attendance and long-term follow-up care among survivors of childhood cancer.MethodsAdherence to clinic attendance was monitored among 941 long-term childhood cancer survivors scheduled for evaluation. Patients were classified as “attenders” or “non-attenders” based on the outcome of their first scheduled clinic appointment over a one year period. Social work staff contacted non-attenders by telephone to determine reasons for missed appointments.ResultsNearly 15% of survivors were classified as non-attenders. Univariate findings revealed that older age, lower SES, being non-white, less medically insured, traveling by car, living shorter distance from clinic, having a scheduled social work consultation, and entering or exiting survivorship clinic were associated with clinic non-attendance (all p valuesu2009<u20090.05). The final multivariate model indicated that non-whites (ORu2009=u20091.88, 95% CIu2009=u20091.19–2.97), patients without insurance (ORu2009=u20092.36, 95% CIu2009=u20091.98–3.79), those traveling by car (ORu2009=u200912.74, 95% CIu2009=u20093.97–40.86), and those who have not experienced secondary cancer events (ORu2009=u20091.76, 95% CIu2009=u20090.94–3.28) were more likely to be non-attenders. Work or school conflicts were the primary reasons cited for missed appointments.Discussion/conclusionsDespite mechanisms designed to reduce financial burdens associated with attending survivorship clinic at our institution, demographic, medical, and logistic barriers exist which impact participation in long-term follow-up.Implications for cancer survivors and providersThese results highlight the importance of developing tailored outreach strategies for survivors of childhood cancer at-risk for clinic non-attendance, particularly among underserved populations.

Acute health-related quality of life in children undergoing stem cell transplant: II. Medical and demographic determinants

Medical and demographic variables were examined as predictors of acute health-related quality of life (HRQL), specifically, somatic distress, mood disturbance and activity levels, during the period of bone marrow transplant (BMT) hospitalization, and the transition phase in the months following hospital discharge. The responses of 153 children undergoing BMT were assessed by both parent report and patient self-report in a prospective longitudinal design. Type of transplant, diagnosis, age, gender, and socio-economic status (SES) were examined as predictor variables of patient outcome. Type of transplant, patient age, and SES emerged as significant determinants of patient response. Children undergoing unrelated donor (MUD) transplants experiencing the highest levels of distress, followed by those undergoing matched-sibling BMT, while those undergoing autologous transplant experienced the lowest levels of distress. Younger patients experienced lower levels of distress and better HRQL than older children and adolescents. Although patients from different SES backgrounds appeared very similar at the time of hospital admission, those from lower SES backgrounds demonstrated greater distress and disturbance in HRQL subsequently, and throughout the first 6 months post BMT. These findings help to target specific subgroups of patients that may be in greater need of preventive interventions or more aggressive supportive care.Bone Marrow Transplantation (2002) 29, 435–442. doi:10.1038/sj.bmt.1703376

Patterns of distress in parents of children undergoing stem cell transplantation

Parents (Nu2009=u2009151) of children undergoing bone marrow or stem cell transplantation (BMT) were assessed in a prospective, longitudinal design with repeated measures of distress (mood disturbance, perceived stress, caregiver burden). Parents were assessed weekly from admission for BMT (week‐1) through week +6 post‐BMT, followed by monthly assessments through month +6. Concurrent measures of child distress (somatic distress, mood disturbance) were also obtained by parent and child report. Parents demonstrate modest, but significant elevations in distress, particularly during the early period from admission through week +3. Elevations in parental distress are transient, and appear to be largely resolved by 4–6 months post‐BMT. Parental distress was unrelated to child age, gender, diagnosis, or type of transplant, but was significantly related to parental socioeconomic status (SES). Parents from lower SES backgrounds reported greater levels of distress throughout the BMT process. Moderate correlations were observed between measures of parent and child distress, and level of child distress at the time of admission for BMT was predictive parental distress trajectories across the acute phase of BMT. These findings point to appropriate targets for intervention to reduce transplant‐related distress.

Effect of race on outcome of white and black children with acute myeloid leukemia: The St. Jude experience

The association between race and outcome of treatment for childhood acute myeloid leukemia (AML) has not been adequately studied.

Proxy assessment of quality of life in pediatric clinical trials : Application of the Health Utilities Index 3

Background: With increased cure rates, pediatric oncology protocols increasingly seek to document the impact of treatment on patients’ disease, symptoms, and functional capacity. Procedure: Nurses as proxy respondents used the Health Utilities Index 3 (HUI3) to assess the health-related quality of life (HRQL) in twenty-five patients (age 6u2009years or older) enrolled on a frontline protocol for leukemia. HRQL observations (n = 70) were made at three different time points to coincide with high-dose methotrexate therapy. Additionally, the proxy respondents evaluated the ease of use of the instrument and the data quality. Results: As patients’ health status declined, the number of unassessable HRQL items increased. These missing data made scoring cumbersome and precluded calculation of the overall HRQL scores for nearly 50% of the patients. Conclusions: Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child’s illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children’s quality of life.