Assessment of the health utility of patients with leukemia in China.

OBJECTIVES: This study aimed to assess the health utility of leukemia patients in China using the EQ-5D-5L, compare it with the population norms, and identify the potential factors associated with health utility. METHODS: A hospital based cross-sectional survey was conducted in three tertiary hospitals from July 2015 to February 2016. A total of 186 patients with leukemia completed the EQ-5D-5L and their health utility scores were calculated using the Chinese value set. EQ-5D-5L utility and dimensions scores of leukemia patients were compared with China's population norms using Kruskal-Wallis test and chi square test. Potential factors associated with health utility were identified using Tobit regression. RESULTS: The mean EQ-5D-5L utility scores of patients with leukemia, grouped by either gender or age, were significantly lower than those of the general population (p < 0.001). The same results were found for individual dimensions of EQ-5D-5L, where leukemia patients reported more health problems than the general population (p < 0.001). The utility score of leukemia patients was found to be significantly related to medical insurance, religious belief, comorbidities, social support and ECOG performance status. CONCLUSION: This study indicated that leukemia patients have worse health status compared to the general population of China and that multiple factors affect the health utility of the patients. The utility scores reported in this study could be useful in future cost-utility analysis.

Social-ecological predictors of school functioning in Hispanic children treated for cancer with central nervous system-directed therapies.

BACKGROUND: Children with brain tumor or acute leukemia are at risk for neurotoxic side effects associated with their cancer therapies. These long-term deficits include poor health-related quality of life (HRQOL) in school and lower educational achievement. Although social-ecological factors may impact these outcomes, it is not known which factors play a role. Our objective was to evaluate the factors affecting school HRQOL in Hispanic childhood cancer survivors, an important at-risk group. PROCEDURE: Multivariable regression analyses examined whether selected social-ecological factors contribute toward suboptimal school HRQOL in 73 Hispanic children treated with central nervous system (CNS)-directed cancer therapies after accounting for effects associated with established cancer-related risk factors. RESULTS: Consistent with expectations from prior research, in our multivariate analysis, the cancer-related factors of having a brain tumor diagnosis and being younger at cancer diagnosis were significant predictors of reduced parent-reported school HRQOL (F(2,65) = 5.46, P < .01) and accounted for 14% of the variance. Adding the social-ecological variables of parent education, child motivation, and parental knowledge accounted for an additional 25% of the variance in school HRQOL, where higher levels were associated with better child school HRQOL. Parenting knowledge was a contributor even after controlling for effects associated with the other variables in the model (F(1,62) = 4.88, P < .05). CONCLUSIONS: Cancer survivorship care should incorporate parent education interventions to enhance the child's school functioning, particularly for Hispanic childhood cancer survivors from predominantly Spanish-speaking families. Future research should consider other at-risk groups and incorporate social-ecological indicators to predict HRQOL outcomes.

Reliability analysis of the Chinese version of the Functional Assessment of Cancer Therapy - Leukemia (FACT-Leu) scale based on multivariate generalizability theory.

BACKGROUND: The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu) scale, a leukemia-specific instrument for determining the health-related quality of life (HRQOL) in patients with leukemia, had been developed and validated, but there have been no reports on the development of a simplified Chinese version of this scale. This is a new exploration to analyze the reliability of the HRQOL measurement using multivariate generalizability theory (MGT). This study aimed to develop a Chinese version of the FACT-Leu scale and evaluate its reliability using MGT to provide evidence to support the revision and improvement of this scale. METHODS: The Chinese version of the FACT-Leu scale was developed by four steps: forward translation, backward translation, cultural adaptation and pilot-testing. The HRQOL was measured for eligible inpatients with leukemia using this scale to provide data. A single-facet multivariate Generalizability Study (G-study) design was demonstrated to estimate the variance-covariance components and then several Decision Studies (D-studies) with varying numbers of items were analyzed to obtain reliability coefficients and to understand how much the measurement reliability could be vary as the number of items in MGT changes. RESULTS: One-hundred and one eligible inpatients diagnosed with leukemia were recruited and completed the HRQOL measurement at the time of admission to the hospital. In the G-study, the variation component of the patient-item interaction was largest while the variation component of the item was the smallest for the four of five domains, except for the leukemia-specific (LEUS) domain. In the D-study, at the level of domain, the generalizability coefficients (G) and the indexes of dependability (Ф) for four of the five domains were approximately equal to or greater than 0.80 except for the Emotional Well-being (EWB) domain (>0.70 but <0.80). For the overall scale, the composite G and composite Ф coefficients were greater than 0.90. Based on the G coefficient and Ф coefficient, two decision options for revising this scale considering the number of items were obtained: one is a 37-item version while the other is a 45-item version. CONCLUSION: The Chinese version of the FACT-Leu scale has good reliability as a whole based on the results of MGT and the implementation of MGT could lead to more informed decisions in complex questionnaire design and improvement.

The burden of care and quality of life of caregivers of leukemia and lymphoma patients following peripheric stem cell transplantation.

This study was conducted to identify the burden of care and quality of life of caregivers of leukemia and lymphoma patients who had undergone peripheric stem cell transplantation. The sample consisted of 123 patient caregivers, all of whom were relatives. Data were collected using a survey, the Burden Interview, and the Caregiver Quality of Life Index Cancer Scale. Data evaluation was done using correlation analysis, Kruskall Wallis, and Mann-Whitney U tests. Factors that were significantly associated with quality of life and care burden perception included caring for an older patient, patient dependence for daily activities, and having low economic status.

Symptom burden and supportive care in patients with acute leukemia.

We examined the symptoms and referral rates to specialized palliative care and psychosocial oncology services of patients with acute leukemia. The Memorial Symptom Assessment Scale (MSAS) was completed by 249 adult patients with acute leukemia. Patients reported a median of 9 physical and 2 psychological symptoms, and those with intense lack of energy, difficulty sleeping and pain were more likely to report intense worrying/sadness (P<0.001). No patients with moderate-severe pain were referred for specialized symptom control and only 13% of those with severe worrying/sadness were referred to psychiatry/psychology within one month of the assessment. Patients in this population have a substantial symptom burden; further research is needed to determine the benefit of early referral to specialized supportive care services.

Multilevel socioeconomic effects on quality of life in adolescent and young adult survivors of leukemia and lymphoma.

PURPOSE: Cancer registry survival analyses have shown that adolescent and young adult patients with low socioeconomic status (SES) have reduced survival compared to those with higher SES. The objective of this study was to determine whether neighborhood- (nSES) and/or individual-level SES (iSES) also predicted current quality of life in adolescent and young adult survivors. METHODS: The Socioeconomics and Quality of Life study surveyed adolescent and young adult survivors of leukemia and lymphoma at least one year post-diagnosis using population-based ascertainment. Factor analysis was used to create a multidimensional age-relevant iSES score and compared with a preexisting census-block-group derived nSES score. Four quality of life domains were assessed: physical health, psychological and emotional well-being, social relationships, and life skills. Nested multivariable linear regression models were run to test the associations between both SES measures and quality of life and to compare the explanatory power of nSES and iSES. RESULTS: Data from 110 individuals aged 16-40 were included in the final analysis. After adjustment for sociodemographic confounders, low nSES was associated only with poorer physical health, whereas low iSES was related to poorer quality of life in all four domains with iSES accounting for an additional 14, 12, 25, and 10 % of the variance, respectively. CONCLUSIONS: Measures of SES at the individual as compared to the neighborhood level may be stronger indicators of outcomes in adolescents and young adults, which has important implications for SES measurement in the context of cancer surveillance.

Measuring health-related quality of life in leukemia: the Functional Assessment of Cancer Therapy--Leukemia (FACT-Leu) questionnaire.

OBJECTIVE: Develop and validate a health-related quality-of-life (measure for patients with acute and chronic leukemia. METHODS: The study consisted of two phases: scale construction and scale validation. For the item-generation phase, a summary of the literature combined with qualitative results from item-generation interviews with 29 acute or chronic leukemia patients and 16 health care providers yielded an initial item pool reflecting leukemia-specific concerns and symptoms. Items underwent iterations of review and reduction according to defined retention criteria to support content validity, as defined by priority concerns of patients. Seventeen final leukemia-specific items were combined with the Functional Assessment of Cancer Therapy-General to create the FACT-Leukemia (FACT-Leu) scale. For the validation phase, 79 individuals with acute or chronic leukemia completed questionnaires at three time points. RESULTS: All FACT-Leu subscale and aggregated scores showed high internal consistency (αs ranging from 0.75 to 0.96). Test-retest reliability was adequate for all subscales (intraclass correlation range 0.765-0.890). The FACT-Leu scale demonstrated good convergent validity, with significant correlations with quality-of-life criteria and performance status, in the expected direction. FACT-Leu subscale scores were significantly different among the three performance status change groups, suggesting good responsiveness to change. CONCLUSIONS: The FACT-Leu scale is a valid, reliable, and efficient measure of leukemia-specific health-related quality of life for acute and chronic disease.

Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment.

PURPOSE: To examine and characterize the psychosocial and health service needs of adult leukemia and lymphoma survivors who had completed active treatment within the past 4 years. METHODS: Self-report surveys were completed by 477 survivors, age 18 to 85 years, to identify areas and correlates of unmet psychosocial, health, and instrumental service needs. Unmet service needs were rank ordered, and nonparametric tests were run to assess relationships. RESULTS: The rate of unmet need was highest regarding sexual issues, handling medical and living expenses, emotional difficulties, employment, and health insurance. Women were more likely to report unmet child care needs than men; younger individuals were more likely to report needing help with emotional difficulties and family problems; and lower income was related to greater unmet need regarding medical and living expenses. Relationships were also observed among the service needs, suggesting overlapping areas of unmet need. CONCLUSION: Adult leukemia and lymphoma survivors demonstrated a diverse range of needs, many of which were related to the psychosocial and physical sequelae of cancer. The findings suggest directions for service provision and development of standards for quality care in this underserved post-treatment population.

Correlates of depressive and anxiety symptoms among the caregivers of leukemic children.

This study aims to reveal correlates of depressive and anxiety symptoms among the Turkish caregivers of leukemic children (n = 100). The effects of demographic variables, satisfaction of the basic needs, performance on daily activities, and coping strategies on outcome variables were investigated by hierarchical regression. Accordingly, older age, lower reported income, higher number of other children to be looked after, lower levels of satisfaction of basic needs, and more use of emotion focused coping were associated with higher levels of both depressive and anxiety symptoms. Moreover, caregivers with lower education reported more depressive symptoms, and higher performance on daily activities predicted more anxiety symptoms.

Assessment of quality of cancer-related follow-up care from the cancer survivor's perspective.

PURPOSE: We assessed cancer survivors' perceptions of the quality of their follow-up care. METHODS: We surveyed a population-based cohort of leukemia, bladder, and colorectal cancer survivors diagnosed 2 to 5 years previously in northern California (N = 623; participation rate, 69.2%; overall response rate, 49.2%). Data were collected between April 2003 and November 2004. Ten scales assessed survivors' perceptions of different aspects of care in the last 12 months, and an eleventh scale measured their overall ratings of care. RESULTS: On nine of the 11 scales, mean scores ranged from 88 to 97 on a 0 to 100 response format, indicating very positive experiences. The two areas where quality perceptions were lower were discussions about health promotion and the physician's knowledge of the whole patient. In adjusted analyses, those without private health insurance (P = .02) and Hispanic and Asian survivors compared with whites (P < .001) reported worse timeliness of care. Survivors who had multiple comorbidities reported better scores on timeliness of care (P < .01) and physicians' knowledge (P = .05) than survivors without any comorbidity. Length of the patient-physician relationship was the variable most consistently found to be significantly associated with survivors' quality assessments. Physicians' information exchange had the strongest relationship with overall ratings of care, followed by physicians' affective behavior, their knowledge of the survivor, and survivors' perceptions of coordination of care (P < .001 for all). CONCLUSION: Delivery of quality follow-up care to cancer survivors may require efforts to improve patient-centered communication and coordination. Special emphasis may need to be placed on health promotion discussions and adoption of a whole-person orientation.

Working without a net: leukemia and lymphoma survivors' perspectives on care delivery at end-of-treatment and beyond.

This study explored survivors' perspectives on care delivery and supportive care needs during reentry. Fifty-one individual interviews were conducted with adult leukemia and lymphoma survivors, 3 to 48 months from treatment cessation. Survivors reported poor continuity of care across the patient-survivor transition, difficulty finding appropriate information/services, lack of preparation, lack of support for survivorship issues, and inadequate or poorly timed follow-up as factors contributing to adjustment difficulties at end of treatment and beyond. Improved care coordination is needed after active treatment, including use of an exit interview and delivery of services that are more congruent and better timed to meet ongoing and emergent survivorship needs.

Effects of a computer-supported interactive tailored patient assessment tool on patient care, symptom distress, and patients' need for symptom management support: a randomized clinical trial.

OBJECTIVE: To examine the effects of a computer-assisted, interactive tailored patient assessment (ITPA) tool in oncology practice on: documented patient care, symptom distress, and patients' need for symptom management support during treatment and rehabilitation. DESIGN AND METHODS: For this repeated measures clinical trial at a university hospital in Norway, 145 patients starting treatment for leukemia or lymphoma were randomly assigned to either an intervention (n=75) or control group (n=70). Both groups used the ITPA for symptom assessments prior to inpatient and outpatient visits for up to one year. The assessment summary, which displayed patients' self-reported symptoms, problems, and distress in rank-order of the patient's need for support, was provided to physicians and nurses in the intervention group only but not in the control group. RESULTS: Significantly more symptoms were addressed in the intervention group patient charts versus those of the control group. Symptom distress in the intervention group decreased significantly over time in 11 (58%) of 19 symptom/problem categories versus 2 (10%) for the control group. Need for symptom management support over time also decreased significantly more for the intervention group than the control group in 13 (68%) symptom categories. CONCLUSION: This is the first study to show that an ITPA used in an interdisciplinary oncology practice can significantly improve patient-centered care and patient outcomes, including reduced symptom distress and reduced need for symptom management support.

Use of the Behavioral Assessment System for Children 2nd Edition: Parent Report Scale in pediatric cancer populations.

This study examined the use of the Behavioral Assessment System for Children-2nd Edition: Parent Report Scale (BASC-2; Reynolds & Kamphaus, Behavior assessment system for children, 2004) in a pediatric cancer population. Comparisons of scale scores were made between pediatric cancer participants and controls. Within group comparisons were also made between subtypes of pediatric cancer. Parents of 111 children and adolescents who had experienced pediatric cancer completed the BASC-2 as part of larger studies of parent-child adjustment to cancer. Scores on the BASC-2 for cancer survivors were compared to a matched control group. Results from MANOVA analyses revealed that children with cancer were categorized as evidencing more emotional and cognitive complaints compared to the control children. Notably, no significant within group differences emerged on the subscales with regard to cancer subtype. Although preliminary, these results suggest that the BASC-2 can identify the cognitive and emotional differences between cancer survivors and controls.

Manhattan transfer: lethal radiation, bone marrow transplantation, and the birth of stem cell biology, ca. 1942-1961.

This study investigates how, in the late 1940s and 1950s, fears of nuclear accidents and nuclear warfare shaped postwar radiobiology. The new and intense forms of radiation generated by nuclear reactor technology, and which would be released in the event of a nuclear war, created concerns about a public-health hazard unprecedented in form and scale. Fears of inadvertent exposure to acute and potentially lethal radiation launched a search for anti-radiation therapies, out of which emerged the new technique of bone marrow transplantation (BMT). This study analyzes the use of BMT first as a research tool to explore the biological effects of ionizing radiation, and then as an adjunct to radiotherapy for the treatment of cancer. In highlighting how BMT became the province of different research and clinical constituencies, this study develops an understanding of the forces and contingencies that shaped its development. Exploring the emergence of BMT and the uses to which it was put, it reveals that BMT remained a technique in the making -- unstable and far from standardized, even as it became both a widely used research tool and rapidly made its way into the clinic. More broadly, it casts new light on one route through which the Manhattan Project influenced postwar radiobiology; it also affords new insights into one means by which radiobiology came to serve the interests of the Cold War state. In its focus on BMT this paper provides a new perspective on the evolving relationship between radiobiology and biomedicine in the postwar period.

Parental experiences of childhood leukemia treatment in indonesia.

In our study, we examined socioeconomic, treatment-related, and psychologic experiences of parents during the acute lymphoblastic leukemia treatment of their children in an academic hospital in Indonesia. Children were treated with the WK-ALL-2000 protocol and received donated chemotherapy. From November 2004 to April 2006, 51 parents were interviewed by psychologists using semi-structured questionnaires. The family income had decreased (69%) since the start of treatment. Parents lost their jobs (29% of fathers and 8% of mothers), most of whom stated that this loss of employment was caused by the leukemia of their child (87% of fathers and 100% of mothers). Treatment costs resulted in financial difficulties (78%), debts (65%), and forced parents either to postpone or withdraw from parts of treatment (18%). Parents mentioned needing more information (86%) from and contact (77%) with doctors. The parent organization did not pay any visits (69%) during hospitalization, nor did they give information (59%) or emotional support (55%). We have concluded that the socioeconomic impact of leukemia treatment was profound. Communication between parents and doctors requires improving. The role of the parent organization was insignificant and must be ameliorated.

Health-related quality of life assessment and reported outcomes in leukaemia randomised controlled trials - a systematic review to evaluate the added value in supporting clinical decision making.

Health-related quality of life (HRQOL) is increasingly reported as an important outcome in cancer clinical trials. However, very little evidence exists on the impact of such evaluation in randomised controlled trials (RCTs) of leukaemia patients. A systematic search of the literature from 1980 to 2007 was undertaken and studies were identified and evaluated independently, according to a pre-defined coding scheme, by three reviewers. Both HRQOL outcomes and traditional clinical reported outcomes were systematically analysed to evaluate their consistency and their relevance for supporting clinical decision making. Nine RCTs were identified, involving 3838 patients overall. There were four RCTs involving acute myeloid leukaemia patients (AML), three with chronic myeloid leukaemia (CML) and two with chronic lymphocytic leukaemia (CLL). Six studies were published after 2000 and provided fairly robust methodological quality. Imatinib greatly improved HRQOL compared to interferon based treatments in CML patients and fludarabine plus cyclophosphamide does not seem to have a deleterious impact on patient's HRQOL when compared to fludarabine alone or chlorambucil in CLL patients. This study revealed the paucity of HRQOL research in leukaemia patients. Nonetheless, HRQOL assessment is feasible in RCTs and has the great potential of providing valuable outcomes to further support clinical decision making.

[Position paper by the Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH) and the Deutsche Leukämie-Forschungshilfe (DLFH) on psycho-social care for pediatric oncology and hematology patients in hospital]. / Positionspapier der Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH) und der Deutschen Leukämie-Forschungshilfe (DLFH) zur psychosozialen Versorgung pädiatrisch-onkologischer und -hämatologischer Patienten in der Akutklinik.

Psychosocial Care has been an integral part of the overall treatment in pediatric oncology for 25 years. The need for it and its effectiveness are well documented in several reputable studies and psychosocial service has proved its worth in everyday clinical settings. In order to secure comparable quality standards and in consequence of reorganisations within the health-care system a position paper has been prepared and adopted by the Psychosoziale Arbeitsgemeinschaft in der Pädiatrischen Onkologie und Hämatologie (PSAPOH), the Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH) and the Deutsche Leukämie-Forschungshilfe (DLFH). The following article gives a short survey of this position paper and provides insight into the goals, conditions and outcomes of psychosocial care in pediatric oncology and hematology.

Symptoms in the palliative phase of children with cancer.

BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.