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Health-related quality of life among children with acute lymphoblastic leukemia.

ABSTRACT: The objective was to quantify the health-related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation.Two types of subjects were included: ALL patients 5 plus years old in a multi-center clinical trial and general population control groups. Patients were assessed during all four major phases of active treatment and approximately 2 years after treatment. Health status and HRQL were measured using HEALTH UTILITIES INDEX® (HUI®) Mark 2 (HUI2) and Mark 3 (HUI3). HRQL scores were used to calculate quality-adjusted life years (QALYs). Excess disability rates identified attributes for remediation.HUI assessments (n = 749) were collected during the five phases. Mean HRQL increased from induction through the post-treatment phase (P < 0.001). There were no significant demographic or treatment effects on HRQL, except for type of asparaginase during continuation therapy (P = 0.005 for HUI2 and P = 0.007 for HUI3). Differences in mean HRQL scores between patients and controls were important (P < 0.001) during the active treatment phases but not during the post-treatment phase. Relative to controls, patients lost approximately 0.2 QALYs during active treatment. Disability was evident in mobility/ambulation, emotion, self-care and pain, and declined over time.Patients with ALL experienced important but declining deficits in HRQL during active treatment phases: Equivalent to losing approximately 2 months of life in perfect health. HRQL within the 2-years post-treatment phase was similar to controls. The policy challenge is to develop new treatment protocols producing fewer disabilities in mobility/ambulation, emotion, self-care, and pain without compromising survival.

SUBMITTER: Furlong W

PROVIDER: S-EPMC4123756 | biostudies-literature | 2012 Oct

REPOSITORIES: biostudies-literature

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Health-related quality of life among children with acute lymphoblastic leukemia.

Furlong William W Rae Charlene C Feeny David D Gelber Richard D RD Laverdiere Caroline C Michon Bruno B Silverman Lewis L Sallan Stephen S Barr Ronald R

Pediatric blood & cancer 20120131 4

<h4>Background</h4>The objective was to quantify the health-related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation.<h4>Procedure</h4>Two types of subjects were included: ALL patients 5 plus years old in a multi-center clinical trial and general population control groups. Patients were assessed during all four major phases of active treatment and approximately 2 years after treatment. Health status and HRQL were ...[more]

PMID: 22294502

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Project description:BackgroundPediatric acute lymphoblastic leukemia (ALL) therapy is accompanied by treatment-related toxicities (TRTs) and impaired quality of life. In Australia and New Zealand, children with ALL are treated with either Children's Oncology Group (COG) or international Berlin-Frankfurt-Munster (iBFM) Study Group-based therapy. We conducted a prospective registry study to document symptomatic TRTs (venous thrombosis, neurotoxicity, pancreatitis and bone toxicity), compare TRT outcomes to retrospective TRT data, and measure the impact of TRTs on children's general and cancer-related health-related quality of life (HRQoL) and parents' emotional well-being.MethodsParents of children with newly diagnosed ALL were invited to participate in the ASSET (Acute Lymphoblastic Leukaemia Subtypes and Side Effects from Treatment) study and a prospective, longitudinal HRQoL study. TRTs were reported prospectively and families completed questionnaires for general (Healthy Utility Index Mark 3) and cancer specific (Pediatric Quality of Life Inventory (PedsQL)-Cancer Module) health related quality of life as well the Emotion Thermometer to assess emotional well-being.ResultsBeginning in 2016, 260 pediatric patients with ALL were enrolled on the TRT registry with a median age at diagnosis of 59 months (range 1-213 months), 144 males (55.4%), majority with Pre-B cell immunophenotype, n = 226 (86.9%), 173 patients (66.5%) treated according to COG platform with relatively equal distribution across risk classification sub-groups. From 2018, 79 families participated in the HRQoL study through the first year of treatment. There were 74 TRT recorded, reflecting a 28.5% risk of developing a TRT. Individual TRT incidence was consistent with previous studies, being 7.7% for symptomatic VTE, 11.9% neurotoxicity, 5.4% bone toxicity and 5.0% pancreatitis. Children's HRQoL was significantly lower than population norms throughout the first year of treatment. An improvement in general HRQoL, measured by the HUI3, contrasted with the lack of improvement in cancer-related HRQoL measured by the PedsQL Cancer Module over the first 12 months. There were no persisting differences in the HRQoL impact of COG compared to iBFM therapy.ConclusionsIt is feasible to prospectively monitor TRT incidence and longitudinal HRQoL impacts during ALL therapy. Early phases of ALL therapy, regardless of treatment platform, result in prolonged reductions in cancer-related HRQoL.

Project description:BackgroundAcute lymphoblastic leukemia is the most common cancer in children. As the 5-year survival rate has been improved to over 80%, more emphasis is now placed on reducing therapy toxicities and enhancing health-related quality of life (HRQoL) of patients during treatment. Our objective was to measure health utility of pediatric acute lymphoblastic leukemia (pALL) patients in China, examine utility weights of different treatment phases and influencing factors of health utility, as well as identify which aspects of HRQoL were most impaired.MethodsA cross-sectional study was conducted in Shanghai Children's Medical Center (SCMC) Affiliated to Shanghai Jiao Tong University School of Medicine in China from April to November 2021. Primary caregivers of 247 patients completed the assessment by CHU9D-CHN and health utility scores were computed for all the patients and stratified by treatment phases. Various multivariable models were constructed and the best was chosen to identify independent factors associated with utility scores. Factors affecting the most impaired dimensions were also examined.ResultsThe overall mean (SD) health utility score was 0.79 (±0.17) and significantly increased from induction (0.73 [±0.19], P < 0.001) to consolidation (0.74 [±0.18]), and to maintenance (0.82 [±0.16]). After adjusting for potentially influencing factors, utility scores in induction (Beta = -0.086, P = 0.005) and consolidation (Beta = -0.074, P = 0.043) were constantly lower than those during maintenance. In item-level analysis, lower age and induction phase were found to be significantly associated with high severity reported on the "school work/homework" dimension. Additionally, only the induction phase (vs. maintenance, OR = 2.24, P = 0.016) was independently associated with the high severity level reported on the "able to join in activities" dimension.ConclusionsThis is the first study that measured health utility of children with pALL in China. Mean health utility scores increased from induction to maintenance. These provided important utility estimates that help inform future health economic models. The phrasing of "School work/homework" in CHU9D-CHN could be further improved. More efforts are needed to design and implement specific interventions targeting at the dimension "able to join in activities" for enhancing HRQoL of children with pALL in China.

Project description:IntroductionPatients with acute myeloid leukemia (AML), especially those with relapsed or refractory AML, have poor clinical prognosis and outcomes. Health-related quality of life (HRQoL) assessments have become increasingly important in oncology, aiding in identifying and informing supportive therapy needs during treatment and beyond; however, HRQoL in hematology, and AML in particular, has received relatively minor attention. The aim was to identify and summarize estimates of HRQoL in patients with AML, including patients with relapsed or refractory AML.MethodsA systematic literature review was performed. MEDLINE and EMBASE databases were searched for peer-reviewed literature published between 2004 and 2014 in the US and Europe. Abstracts from four relevant conference proceedings between 2012 and 2014 were reviewed. Data from eligible studies were extracted describing the HRQoL instruments used, domains assessed, and HRQoL scores reported.ResultsFourteen peer-reviewed studies met the eligibility criteria and were included in the review. Cancer- or leukemia-specific HRQoL measures were used in 78.6% of the studies. Overall, HRQoL was superior among AML survivors compared to individuals on active treatment. Fatigue was identified as the most problematic symptom domain in patients, irrespective of their treatment status. Reported HRQoL declined shortly after diagnosis or treatment initiation and recovered over time.ConclusionThe included studies identified a decrease in HRQoL after treatment initiation and highlighted the role of fatigue in HRQoL in this patient population. Limited HRQoL data were identified among relapsed or refractory AML patients although they have worse prognostic outcomes. New treatment options that have less negative impact on HRQoL or health initiatives specifically targeting HRQoL of patients with AML are warranted. In addition, further studies exploring HRQoL in the relapsed or refractory patient population are needed to inform disease management and treatment decisions.

Dataset Information

Health-related quality of life among children with acute lymphoblastic leukemia.

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Health-related quality of life among children with acute lymphoblastic leukemia.

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