scholarly journals Updated EORTC QLQ-C30 general population norm data for Germany

2020 ◽  
Vol 137 ◽  
pp. 161-170
Author(s):  
Sandra Nolte ◽  
Annika Waldmann ◽  
Gregor Liegl ◽  
Morten Aa Petersen ◽  
Mogens Groenvold ◽  
...  
2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 3614-3614
Author(s):  
Shivaani Kummar ◽  
Cornelis M. Van Tilburg ◽  
Catherine M. Albert ◽  
Jordan Berlin ◽  
Anna F. Farago ◽  
...  

3614 Background: NTRK gene fusions occur in diverse tumor types in adults and children. The selective TRK inhibitor, larotrectinib, has shown high response rates, durable disease control, and a favorable safety profile in patients (pts) with TRK fusion cancer. We report an expanded quality of life (QoL) analysis for pts treated with larotrectinib. Methods: QoL data were collected in two trials of larotrectinib in pts with TRK fusion cancer using EORTC QLQ-C30 (adults) and PedsQL (children) questionnaires, and were analyzed descriptively and longitudinally. EORTC QLQ-C30 global health scores (GHS) and PedsQL total scores range from 0 to 100, with higher scores indicating better QoL. We calculated the proportion of pts with normal/above and below normal QoL scores compared to values in the literature for the US general population. Results: By July 2019, 126 pts with TRK fusion cancer (74 adults, 24 children ≥2 yrs, and 28 infants <2 yrs) had received larotrectinib and completed baseline (BL) and ≥1 post-BL questionnaire. Most pts had clinically meaningful QoL improvements that reached or exceeded the minimally important difference (Table); a positive change from BL was also seen in infants: mean best change of 12.0 (SD 13.8). Of 52 adults with BL EORTC QLQ-C30 GHS at or above the population norm, 51 remained in this category on treatment and 1 moved into the below normal category. Of 22 adults with BL scores below the population norm, 20 moved into the normal/above normal category. All 9 children aged ≥2 yrs with BL PedsQL scores at or above the population norm remained in this category on treatment. Of 15 children with BL scores below the population norm, 10 moved into the normal/above normal category. Sustained QoL improvements (change from BL ≥0) occurred by 2 months of treatment in 69% of adults and 75% of children. Median duration of sustained improvement in EORTC QLQ-C30 GHS and PedsQL total score was 12.0 months (range 1.7–20.3) and not estimable (range 1.1–23.0), respectively. Conclusions: Adults and children with TRK fusion cancer treated with larotrectinib had rapid, clinically meaningful, and sustained improvements in QoL. Clinical trial information: NCT02576431, NCT02637687 . [Table: see text]


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jens Lehmann ◽  
Bernhard Holzner ◽  
Johannes M. Giesinger ◽  
Andrew Bottomley ◽  
Shaad Ansari ◽  
...  

Abstract Background The impact of the coronavirus disease (COVID-19) pandemic on wellbeing and health has so far been studied using mostly cross-sectional designs. To place recent findings into context, we compared symptoms and functional health status in two independent samples assessed before and during the COVID-19 pandemic. Methods Participants were recruited via an online panel using quota sampling. We assessed symptoms, functional health, and global quality of life with the EORTC QLQ-C30 in two general population samples in Spain (collected in July 2019 and April 2020). We also assessed several COVID-19 related variables, such as adherence to social distancing. Results Data from N = 1010 participants before the pandemic (mean age 47.1 years, 50.5% female) were compared with data from N = 504 participants during the pandemic (mean age 47.1 years, 50.8% female). Participants during the pandemic (vs. before the pandemic) reported lower role functioning and emotional functioning, as well as less symptom burden. A lower degree of social distancing was associated with better functional health and lower symptom burden. Conclusion Our findings indicate an impact of the COVID-19 pandemic on functional health and symptom burden in the Spanish general population. The comparison of before and during the pandemic can be used to benchmark results raised only during the pandemic.


2019 ◽  
Vol 53 (3) ◽  
pp. 337-347 ◽  
Author(s):  
Sanja Ledinski Ficko ◽  
Vlatko Pejsa ◽  
Vesna Zadnik

Abstract Background The impact of disease and treatment on the patient’s overall well-being and functioning is a topic of growing interest in clinical research and practice. The aim of this study is to obtain reference data on quality of life of Croatian general population. Further, we aim to assess the impact of the disease and its primary systemic treatment on their health related quality of life (HrQoL) in multiple myeloma (MM) patients. Patients and methods Participants for the first part of the study were randomly selected from adult Croatian population. In the clinical part of the study MM patients were included as prospectively diagnosed within two years in two major Croatian haematological centres. The EORTC QLQ-C30 in both trials and QLQ-MY20 in MM patients only were applied for HrQoL assessment. Results Gender, age and place of residence have great impact on quality of life scores in Croatian population. The MM patients at the time of diagnosis have lower QLQ-C30 scores for global quality of life, functional and symptom scale scores, as well as single items. The type of disease followed by the choice of therapy options are important HrQoL determinants. Conclusions The norm values available now for Croatian population will help to interpret HrQoL for clinicians and aid in planning cancer care interventions. This study identified treatment effect consistent with those from other observational studies and provided new data on HrQoL across two different treatment choices for MM patients.


Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 1023-1023
Author(s):  
Valeria Santini ◽  
Alessandro Sanna ◽  
Alberto Bosi ◽  
Giuliana Alimena ◽  
Giuseppina Loglisci ◽  
...  

Abstract Abstract 1023 Background: The annual incidence rate of myelodysplastic syndromes (MDS) in the general population is estimated at around 3–5/100,000. Because of a lack of specific therapies, until recently small attention has been devoted to costs of treatment of MDS. A specific Diagnosis-Related Group is still missing. In the US the mean annual cost for MDS patients ranges from $19,811 to $51,066. Aims: To assess the annual cost of illness (COI) and quality of life (QoL) of patients with MDS in Italy. Methods: The Costo Sociale delle Sindromi Mielodisplastiche e Qualità della vita in Italia (CoSMIQ) is an observational, cross-sectional, retrospective, prevalence-based, multicenter study based on an International Prognostic Scoring System (IPSS)-stratified sample of patients with MDS ≥18 years of age seen in standard clinical practice at 7 hematologic institutions across Italy (3 in the North; 2 in the Center; and 2 in the South). Demographics, clinical history, health care and non-healthcare resource consumption, and patients' and caregivers' productivity losses were collected by physicians using clinical records and information provided by patients. COI (in Euro (€) 2010) was determined utilizing a societal perspective. QoL was assessed via EORTC QLQ-C30 and QOL-E v.2 questionnaires, the latter being a new specific tool for the assessment of health-related QoL in patients with MDS. Kendall's tau rank correlation, chi-squared test, multivariate analysis of variance (ANOVA; MANOVA) and multiple linear regressions were performed when appropriate. Results: In all, 225 of 234 patients who met the inclusion criteria were analyzed (IPSS low risk: 124 patients; intermediate-1 (Int-1) risk: 75 patients; Int-2 and high risk: 26 patients) (Table). The total COI reached €27,980.4 ± 28,322.2 (mean ± standard deviation) (Figure). Cost-drivers of COI were antianemics (lower-risk) and antineoplastics (higher-risk). The Italian National Health Service (INHS) funded the greatest share of COI (from 97.4% to 99.5%). In general, CoSMIQ patients perform worse than the general population in all EORTC QLQ-C30 domains; the total global health status (QL) domain reached 65.1 ± 22.2 (low risk: 64.2 ± 22.3; Int-1 risk: 67.4 ± 22.1; higher-risk: 62.5 ± 22.3). QL was negatively correlated with COI (p=0.049) and patients' age (p=0.089), and positively correlated with disease duration (p=0.203). Keeping the other predictors constant, RBC transfusion dependence predicts increased COI (p=0.006) and lower QL (p=0.009). Regarding the QOL-E questionnaire, the QOL-E MDS-specific domain (MDSS) was positively correlated with total COI (p=0.0002), and patients' age (p=0.348) and negatively correlated with disease duration (p=0.013). The total QOL MDSS was 27.5 ± 19.8 (low risk: 25.3 ± 19.4; Int-1 risk: 29.6 ± 19.3; higher-risk: 31.6 ± 22.2). The total treatment-outcome index domain (QOL TOI) was 49.4 ± 14.4 (low risk: 49.1 ± 14.7; Int-1 risk: 48.3 ± 14.7; higher-risk: 53.9 ± 11.7). QOL TOI was negatively correlated with total COI (p=0.379), and patients' age (p=0.0003) and positively correlated with disease duration (p=0.162). Differences by IPSS group were not statistically significant for COI (p=0.191) or for any domain of the EORTC QLQ-C30 or QOL-E questionnaires (p=0.124; p=0.467). Conclusion: MDS dramatically increases INHS budgets while negatively impacting patients' QoL. The results of the CoSMIQ study highlight the strong correlation between RBC transfusion dependence and both COI and QL. Disclosures: Lazzaro: Celgene Srl: Research Funding. Martelli:Celgene Srl: Employment, Equity Ownership.


Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2567-2567
Author(s):  
Elena Liew ◽  
Eshetu G Atenafu ◽  
Shabbir M.H. Alibhai ◽  
Joseph M. Brandwein

Abstract Abstract 2567 Background: The use of pediatric-based protocols in the management of adult acute lymphoblastic leukemia (ALL) appears to result in improved survival, particularly in young adults. However, significant treatment-related toxicities have been identified with these regimens, including osteonecrosis and peripheral neuropathy. These are potentially disabling and can adversely affect quality of life (QoL); however, the long-term impact of such treatment regimens on health-related QoL in this adult population has not previously been reported. We therefore aimed to assess various dimensions of QoL in long-term survivors of adult ALL following treatment with a modified Dana Farber Cancer Institute 91-01 pediatric protocol, which is used as standard frontline therapy in our institution. Methods: QoL was self-reported using 5 psychometrically validated instruments: the EORTC QLQ-C30, the Functional Assessment of Cancer Therapy fatigue subscale (FACT-F), the Brief Pain Inventory, the Subjective Peripheral Neuropathy Screen (SPSS), and the 9-item Patient-Health Questionnaire (PHQ-9). Standard analyses of each instrument were conducted. Where available, results were compared to published population normative data. Results: 29 patients (median age 41 years, range 21–64, 90% male), in continuous complete remission at a median of 28 months following completion of the two-year treatment protocol, were enrolled between March 2010 - April 2012. In comparison to reference data from a general population, the mean global health score on the EORTC QLQ-C30 was similar (p=0.68), but leukemia survivors had lower cognitive (p<0.001) and social (p<0.001) function scores, as well as more marked financial difficulty (p<0.001). The most prevalent and severe of the symptom items assessed by the EORTC QLQ-C30 were fatigue and pain, both of which showed significant inverse correlation with global health status and all functional scales (physical, role, emotional, cognitive, and social). Some degree of fatigue was reported by 83% of patients. Evaluation by FACT-F revealed worse fatigue scores for leukemia survivors compared with the general population (p=0.03). Mean pain intensity was higher in those more than 24 months from completion of treatment, vs. < 24 months (p=0.04). In the 9 patients (31%) experiencing moderate-severe pain, the most common sites were joints and neck/back. Of the 10 patients reporting regular use of analgesics, 4 were using opioids. The SPSS identified 12 patients (43%) with moderate or severe symptoms associated with peripheral neuropathy (burning, paraesthesias and/or numbness), mostly affecting the lower extremities. Neuropathy was more severe in patients over age 40 (p<0.01). The PHQ-9 identified 4 patients (14%) with significant depressive symptoms. Conclusions: Long-term adult ALL survivors who were treated with a pediatric-based regimen generally do well in terms of global QoL. However, fatigue, joint-related pain and neuropathy symptoms are common and can negatively affect QoL. Impairments in the domains of cognitive function and social function, as well as the prominence of financial hardship in this population, are findings that warrant further exploration. Disclosures: No relevant conflicts of interest to declare.


2021 ◽  
Author(s):  
Juan Ignacio Arraras ◽  
Sandra Nolte ◽  
Gregor Liegl ◽  
Matthias Rose ◽  
Ana Manterola ◽  
...  

Abstract PurposeGeneral population normative data for the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire facilitates interpretation of data assessed from cancer patients. This study aimed to present normative data of the Spanish general population.Methods/Patients Data were obtained from a prior larger study collecting EORTC QLQ-C30 norm data across 15 countries. Data were stratified by sex and age groups (18–39, 40–49, 50–59, 60–69 and >70 years). Sex and age distribution were weighted according to population distribution statistics. Sex- and age-specific normative values were analysed separately, as were participants with versus those without health conditions. Multiple linear regression was used to estimate the association of each of the EORTC QLQ-C30 scales with the determinants age, sex, sex-by-age interaction term, and health condition. Results 1165 Spanish individuals participated in the study. Differences were found by sex and age. The largest sex-related differences were seen in fatigue, emotional functioning, and global QoL (Quality of Life), favouring men. Largest age differences were seen in emotional functioning, insomnia, and pain, with middle-aged groups having the worst scores. Those >60 years scored better than those <60 years on all scales except for physical functioning. Participants with no health conditions scored better in all QLQ-C30 domains.ConclusionsThe present study highlights differences in HRQoL between specific sex/age strata and especially between persons with and without a health condition in the Spanish general population. These factors must be considered when comparing general population HRQoL data with that of cancer patients.


2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Jens Lehmann ◽  
◽  
Johannes M. Giesinger ◽  
Sandra Nolte ◽  
Monika Sztankay ◽  
...  

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Juan Ignacio Arraras ◽  
Sandra Nolte ◽  
Gregor Liegl ◽  
Matthias Rose ◽  
Ana Manterola ◽  
...  

Abstract Purpose General population normative data for the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire facilitates interpretation of data assessed from cancer patients. This study aims to present normative data of the general Spanish population. Methods/patients Data were obtained from a prior larger study collecting EORTC QLQ-C30 norm data across 15 countries. Data were stratified by sex and age groups (18–39, 40–49, 50–59, 60–69 and > 70 years). Sex and age distribution were weighted according to population distribution statistics. Sex- and age-specific normative values were analysed separately, as were participants with versus those without health conditions. Multiple linear regression was used to estimate the association of each of the EORTC QLQ-C30 scales with the determinants age, sex, sex-by-age interaction term, and health condition. Results In total, 1,165 Spanish individuals participated in the study. Differences were found by sex and age. The largest sex-related differences were seen in fatigue, emotional functioning, and global QOL (Quality of Life), favouring men. The largest age differences were seen in emotional functioning, insomnia, and pain, with middle-aged groups having the worst scores. Those > 60 years old scored better than those < 60 years old on all scales except for physical functioning. Participants with no health conditions scored better in all QLQ-C30 domains. Conclusions The present study highlights differences in HRQOL between specific sex/age strata and especially between people with and without a health condition in the general Spanish population. These factors must be considered when comparing general population HRQOL data with that of cancer patients.


Sign in / Sign up

Export Citation Format

Share Document