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Background: Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods: In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3-5 consultations over a period of 4-6 months. The primary outcome measure was patients' health-related QoL, as measured by FACIT-G. Patients' satisfaction with the consultation and survival were secondary outcomes. Results: There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions: Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

Acknowledgments The Multi-Attribute Utility in Cancer (MAUCa) Consortium, in addition to those named as authors, consists of the following members, all of whom made some contribution to the research reported in this paper, as outlined above: John Brazier, David Cella, Stein Kaasa, Georg Kemmler, Helen McTaggart-Cowan, Richard Norman, Stuart Peacock, Simon Pickard, Neil Scott, Martin Stockler, and Deborah Street. This research was supported by a National Health and Medical Research Council (NHMRC; Australia) Project Grant (632662). Monika Janda is supported by an NHMRC career development award 1045247. Professor King is supported by the Australian Government through Cancer Australia. ; Peer reviewed ; Publisher PDF

This research was funded by the National Health and Medical Research Council of Australia (Project Grant 632662). Dr Norman was supported by a NHMRC Early Career Research Fellowship (1069732). Professor King was supported by the Australian Government through Cancer Australia. ; Peer reviewed ; Publisher PDF

OBJECTIVE: The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 health-related quality of life questionnaire is one of the most widely used cancer-specific health-related quality of life questionnaires worldwide. General population norm data can facilitate the interpretation of QLQ-C30 data obtained from cancer patients. This study aimed at systematically collecting norm data from the general population to develop European QLQ-C30 norm scores and to generate comparable norm data for individual countries in Europe and North America. METHODS: We collected QLQ-C30 data from the general population across 11 European Union (EU) countries, Russia, Turkey, Canada and United States (n > /= 1000/country). Representative samples were stratified by sex and age groups (18-39, 40-49, 50-59, 60-69 and > /= 70 years). After applying weights based on the United Nations population distribution statistics, we calculated QLQ-C30 domain scores to generate a 'European QLQ-C30 Norm' based on the EU countries. Further, we calculated QLQ-C30 norm scores for all 15 individual countries. RESULTS: A total of 15,386 respondents completed the online survey. For the EU sample, most QLQ-C30 domains showed differences by sex/age, with men scoring somewhat better health than women, while age effects varied across domains. Substantially larger differences were seen in inter-country comparisons, with Austrian and Dutch respondents reporting consistently better health compared with British and Polish respondents. CONCLUSIONS: This study is the first to systematically collect EORTC QLQ-C30 general population norm data across Europe and North America applying a consistent data collection method across 15 countries. These new norm data facilitate valid intra-country as well as inter-country comparisons and QLQ-C30 score interpretation.

OBJECTIVE: The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 health-related quality of life questionnaire is one of the most widely used cancer-specific health-related quality of life questionnaires worldwide. General population norm data can facilitate the interpretation of QLQ-C30 data obtained from cancer patients. This study aimed at systematically collecting norm data from the general population to develop European QLQ-C30 norm scores and to generate comparable norm data for individual countries in Europe and North America. METHODS: We collected QLQ-C30 data from the general population across 11 European Union (EU) countries, Russia, Turkey, Canada and United States (n ≥ 1000/country). Representative samples were stratified by sex and age groups (18-39, 40-49, 50-59, 60-69 and ≥ 70 years). After applying weights based on the United Nations population distribution statistics, we calculated QLQ-C30 domain scores to generate a 'European QLQ-C30 Norm' based on the EU countries. Further, we calculated QLQ-C30 norm scores for all 15 individual countries. RESULTS: A total of 15,386 respondents completed the online survey. For the EU sample, most QLQ-C30 domains showed differences by sex/age, with men scoring somewhat better health than women, while age effects varied across domains. Substantially larger differences were seen in inter-country comparisons, with Austrian and Dutch respondents reporting consistently better health compared with British and Polish respondents. CONCLUSIONS: This study is the first to systematically collect EORTC QLQ-C30 general population norm data across Europe and North America applying a consistent data collection method across 15 countries. These new norm data facilitate valid intra-country as well as inter-country comparisons and QLQ-C30 score interpretation.

Objective: The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 health-related quality of life questionnaire is one of the most widely used cancer-specific health-related quality of life questionnaires worldwide. General population norm data can facilitate the interpretation of QLQ-C30 data obtained from cancer patients. This study aimed at systematically collecting norm data from the general population to develop European QLQ-C30 norm scores and to generate comparable norm data for individual countries in Europe and North America. Methods: We collected QLQ-C30 data from the general population across 11 European Union (EU) countries, Russia, Turkey, Canada and United States (n ≥ 1000/country). Representative samples were stratified by sex and age groups (18–39, 40–49, 50–59, 60–69 and ≥70 years). After applying weights based on the United Nations population distribution statistics, we calculated QLQ-C30 domain scores to generate a 'European QLQ-C30 Norm' based on the EU countries. Further, we calculated QLQ-C30 norm scores for all 15 individual countries. Results: A total of 15,386 respondents completed the online survey. For the EU sample, most QLQ-C30 domains showed differences by sex/age, with men scoring somewhat better health than women, while age effects varied across domains. Substantially larger differences were seen in inter-country comparisons, with Austrian and Dutch respondents reporting consistently better health compared with British and Polish respondents. Conclusions: This study is the first to systematically collect EORTC QLQ-C30 general population norm data across Europe and North America applying a consistent data collection method across 15 countries. These new norm data facilitate valid intra-country as well as inter-country comparisons and QLQ-C30 score interpretation.

In general, governments and health authorities have taken precautions during the COVID-19 pandemic to reduce the viral spread and protect vulnerable citizens. Patients with multiple myeloma (MM) have an increased risk of being infected with COVID-19 and developing a fatal course due to the related immunodeficiency. We investigated how Danish patients with MM reported their quality of life (QoL) pre-COVID and during COVID, in an ongoing longitudinal QoL survey. The responses given during the first and second wave of the COVID-19 pandemic were pooled, analyzed and compared to the same period the year before. We hypothesized that locking down the society would have caused deteriorated QoL and that patients living alone and those under the age of 65 would be particularly affected by the situation. Surprisingly, our study showed the opposite. Statistically significant and clinically relevant differences were primarily found during the first lock down and represented reduced fatigue, improved role functioning, decreased insomnia and improved physical health summaries in patients below 65 years of age. These results indicate that Danish patients with MM might have felt protected and safe by COVID restrictions. Otherwise, the questionaries used in QoL-MM survey may not have been able to capture the impact of the COVID-19 pandemic. Importantly, this indicates that QoL survey data obtained in clinical studies, in countries with highly developed health-care systems using standard questionnaires during the pandemic, allow room for interpretation without being adjusted for the impacts of the pandemic.

This study analyzes the satisfaction of the patients with radical prostatectomy according to the signs and symptoms included in the EORTC QLQ -C30 and EORTC QLQ -PR25 questionnaires, including their relation with the health state that influences the pre and postoperative life quality. Fifty patients with prostate cancer in a localized stage were studied and analyzed in a prospective manner and for a period of 12 months, before and 6 months after the radical prostatectomy. In choosing the patients, the common denominator was the use of the same postoperative plan and the lack of postoperative complications, as well as the lack of chronic diseases. Erectile dysfunction, urine incontinence were quite frequent after radical prostatectomy, while the urinary obstruction and the weak urinary stream were less frequent. In this regard, people noticed a significant decrease of life quality. Although the study addressed a small group of patients, the results are similar to those belonging to other clinical studies. Even if the aspect of life quality is more rarely taken into account, the questionnaires regarding the life quality are specific, useful and quite cheap in evaluating different therapies.

Introduction. Introduction -- Principles of measurement scales. Developing and testing questionnaires. Scores and measurements: validity, reliability, sensitivity-- Multi-item scales -- Factor analysis -- Item response theory and differential item functioning -- Questionnaire development and scoring. Analysis of QoL data. Cross-sectional analysis -- Exploring longitudinal data -- Modelling longitudinal data -- Missing data -- Quality-adjusted survival. Practical aspects and clinical interpretation. Clinical trials -- Sample sizes -- Practical and reporting issues -- Clinical interpretation. Appendix: Examples of instruments. Generic instruments : Sickness Impact Profile (SIP) ; Nottingham Health Profile (NHP) ; Medical Outcomes Study 36-item short form-36 (SF-36) ; EuroQol (EQ-5D) ; Patient Generated Index (PGI) -- Disease-specific instruments : European Organization for Research and Treatment of Cancer (EORTC QLQ-C30) ; EORTC Head and Neck Module (EORTC H & N35) ; Functional Assessment of Cancer--General Version (FACT-G) ; Rotterdam Symptom Checklist (RSCL) ; Quality of Life in Epilepsy (QOLIE-89) ; Paediatric Asthma Quality of Life Questionnaire (PAQLQ) -- Domain-specific instruments : Hospital Anxiety and Depression Scale (HADS) ; Short Form McGill Pain Questionnaire (SF-MPQ) ; Multidimensional Fatigue Inventory (MFI-20) -- ADL and disability : Barthel Index of Disability (modified) (BI) -- Statistical tables : Normal distribution ; Probability points of Normal distribution ; The t-distribution ; The x² distribution ; The F-distribution.

Introduction. The location of intracranial neoplasms and the process of treating these lesions itself can significantly affect the quality of life of patients. Hence, the aim of the study was to investigate the impact of the location of the brain tumour on the quality of life of surgically treated patients.Aim. The aim of the study was to investigate the influence of the location of the brain tumour on the quality of life of surgically treated patients.Material and Methods. The study included 236 patients with brain tumours operated at the Department of Neurosurgery of the 10th Military Clinical Hospital with the SP ZOZ Polyclinic in Bydgoszcz. Patients with different tumour locations were included: in the temporal lobe, in the frontal lobe, in the parietal lobe, in the ventricles of the brain and in the extra-cerebral locations. The following questionnaires were used to assess the quality of life: EORTC QLQ-C30 and EORTC QLQ-BN20, in which the patients were tested three times: on the day of admission to the Clinic, on the fifth day after brain tumour surgery and 30 days after the surgery.Results. Patients' quality of life decreased in the early postoperative period in all groups in terms of tumour location, especially in patients with tumours of the frontal lobe (-0.104) and ventricular neoplasms (-0.109) (p > 0.05). On the 30th day, however, an improvement in the quality of life was achieved in all groups, the highest improvement was obtained in patients with tumours located extra-cerebrally (0.115) and tumours of the temporal lobe (0.097) (p > 0.05).Conclusions. There was no effect of the location of the brain tumour on the quality of life of the studied patients. In the early postoperative period, the quality of life decreased, while it improved 30 days after the surgery. (JNNN 2020;9(3):91–96) ; Wstęp. Umiejscowienie nowotworów wewnątrzczaszkowych a także sam proces leczenia tych zmian mogą znacząco wpływać na jakość życia pacjentów. Stąd celem pracy było zbadanie wpływu usytuowania guza mózgu na jakość życia chorych leczonych operacyjnie.Cel. Celem pracy było zbadanie wpływu usytuowania guza mózgu na jakość życia chorych leczonych operacyjnie.Materiał i metody. Badaniami objęto 236 pacjentów z guzami mózgu operowanych w Klinice Neurochirurgii 10 Wojskowego Szpitala Klinicznego z Polikliniką SP ZOZ w Bydgoszczy. Uwzględniono pacjentów z różnym umiejscowieniem nowotworu: w płacie skroniowym, w płacie czołowym, w płacie ciemieniowym, w komorach mózgu oraz położonych zewnątrzmózgowo. Do oceny jakości życia wykorzystano kwestionariusze: EORTC QLQ-C30 i EORTC QLQ-BN20, którymi pacjenci badani byli trzykrotnie: w dniu przyjęcia do Kliniki, w piątej dobie po operacji nowotworu mózgu oraz 30 dni po zabiegu.Wyniki. Jakość życia pacjentów uległa obniżeniu we wczesnym okresie pooperacyjnym we wszystkich uwzględnionych grupach pod względem lokalizacji nowotworu, a szczególnie u chorych z nowotworami płata czołowego (-0,104) i nowotworami komór mózgu (-0,109) (p > 0,05). W 30 dobie natomiast uzyskano poprawę jakości życia także we wszystkich ujętych grupach, najwyższą poprawę uzyskano u pacjentów z guzami położonymi zewnątrzmózgowo (0,115) i guzami płata skroniowego (0,097) (p > 0,05).Wnioski. Nie zaobserwowano wpływu położenia nowotworu mózgu na jakość życia badanych pacjentów. We wczesnym okresie pooperacyjnym jakość życia ulega obniżeniu, natomiast 30 dni po zabiegu operacyjnym nastąpiła jej poprawa. (PNN 2020;9(3):91–96)

Introduction. The location of intracranial neoplasms and the process of treating these lesions itself can significantly affect the quality of life of patients. Hence, the aim of the study was to investigate the impact of the location of the brain tumour on the quality of life of surgically treated patients.Aim. The aim of the study was to investigate the influence of the location of the brain tumour on the quality of life of surgically treated patients.Material and Methods. The study included 236 patients with brain tumours operated at the Department of Neurosurgery of the 10th Military Clinical Hospital with the SP ZOZ Polyclinic in Bydgoszcz. Patients with different tumour locations were included: in the temporal lobe, in the frontal lobe, in the parietal lobe, in the ventricles of the brain and in the extra-cerebral locations. The following questionnaires were used to assess the quality of life: EORTC QLQ-C30 and EORTC QLQ-BN20, in which the patients were tested three times: on the day of admission to the Clinic, on the fifth day after brain tumour surgery and 30 days after the surgery.Results. Patients' quality of life decreased in the early postoperative period in all groups in terms of tumour location, especially in patients with tumours of the frontal lobe (-0.104) and ventricular neoplasms (-0.109) (p > 0.05). On the 30th day, however, an improvement in the quality of life was achieved in all groups, the highest improvement was obtained in patients with tumours located extra-cerebrally (0.115) and tumours of the temporal lobe (0.097) (p > 0.05).Conclusions. There was no effect of the location of the brain tumour on the quality of life of the studied patients. In the early postoperative period, the quality of life decreased, while it improved 30 days after the surgery. (JNNN 2020;9(3):91–96) ; Wstęp. Umiejscowienie nowotworów wewnątrzczaszkowych a także sam proces leczenia tych zmian mogą znacząco wpływać na jakość życia pacjentów. Stąd celem pracy było zbadanie wpływu usytuowania guza mózgu na jakość życia chorych leczonych operacyjnie.Cel. Celem pracy było zbadanie wpływu usytuowania guza mózgu na jakość życia chorych leczonych operacyjnie.Materiał i metody. Badaniami objęto 236 pacjentów z guzami mózgu operowanych w Klinice Neurochirurgii 10 Wojskowego Szpitala Klinicznego z Polikliniką SP ZOZ w Bydgoszczy. Uwzględniono pacjentów z różnym umiejscowieniem nowotworu: w płacie skroniowym, w płacie czołowym, w płacie ciemieniowym, w komorach mózgu oraz położonych zewnątrzmózgowo. Do oceny jakości życia wykorzystano kwestionariusze: EORTC QLQ-C30 i EORTC QLQ-BN20, którymi pacjenci badani byli trzykrotnie: w dniu przyjęcia do Kliniki, w piątej dobie po operacji nowotworu mózgu oraz 30 dni po zabiegu.Wyniki. Jakość życia pacjentów uległa obniżeniu we wczesnym okresie pooperacyjnym we wszystkich uwzględnionych grupach pod względem lokalizacji nowotworu, a szczególnie u chorych z nowotworami płata czołowego (-0,104) i nowotworami komór mózgu (-0,109) (p > 0,05). W 30 dobie natomiast uzyskano poprawę jakości życia także we wszystkich ujętych grupach, najwyższą poprawę uzyskano u pacjentów z guzami położonymi zewnątrzmózgowo (0,115) i guzami płata skroniowego (0,097) (p > 0,05).Wnioski. Nie zaobserwowano wpływu położenia nowotworu mózgu na jakość życia badanych pacjentów. We wczesnym okresie pooperacyjnym jakość życia ulega obniżeniu, natomiast 30 dni po zabiegu operacyjnym nastąpiła jej poprawa. (PNN 2020;9(3):91–96)

BACKGROUND: Lack of physical activity throughout one's lifetime has been associated with obesity and it is also an important risk factor of breast cancer. This study aimed to determine the relationship between objectively measured physical activity and sedentary behaviour with health-related quality of life (HRQoL) among breast cancer survivors in the East Coast region of Peninsular Malaysia. METHODS: A cross-sectional study involving 83 breast cancer survivors was carried out in two main government referral hospitals in the region. Participants wore the ActivPAL3™ microdevice physical activity monitor for seven consecutive days. The validated European Organization for Research and Treatment of Cancer Quality of Life Questionnaires (EORTC QLQ–C30) and Breast Cancer Supplementary Measure (EORTC QLQ-BR23) were used to measure their HRQoL. Multiple linear regression analysis was conducted to determine the relationship between objectively measured physical activity and sedentary behaviour with HRQoL. RESULTS: Longer time spent on moderate to vigorous physical activity (MVPA) was significantly associated with an improvement of HRQoL (p = 0.039) whereas longer time spent on sedentary behaviour significantly reduced the functioning score (p = 0.005). In addition, prolonged sedentary bouts were also significantly associated with better body image that led to improved HRQoL (p = 0.013). CONCLUSIONS: The study findings suggest that an increase in the time spent on MVPA was associated with improved HRQoL while sedentary behaviour was associated with poorer HRQoL among breast cancer survivors. Thus, it is essential to displace sedentary behaviour with MVPA to improve the quality of life of breast cancer survivors.

OBJECTIVE: The computer-adaptive test (CAT) of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC CAT Core, assesses the same 15 domains as the EORTC QLQ-C30 health-related quality of life questionnaire but with increased precision, efficiency, measurement range and flexibility. CAT parameters for estimating scores have been established based on clinical data from cancer patients. This study aimed at establishing the European Norm for each CAT domain based on general population data. METHODS: We collected representative general population data across 11 European Union (EU) countries, Russia, Turkey, Canada and the United States (n > /= 1000/country; stratified by sex and age). We selected item subsets from each CAT domain for data collection (totalling 86 items). Differential item functioning (DIF) analyses were conducted to investigate cross-cultural measurement invariance. For each domain, means and standard deviations from the EU countries (weighted by country population, sex and age) were used to establish a T-metric with a European general population mean = 50 (standard deviation = 10). RESULTS: A total of 15,386 respondents completed the online survey (n = 11,343 from EU countries). EORTC CAT Core norm scores for all 15 countries were calculated. DIF had negligible impact on scoring. Domain-specific T-scores differed significantly across countries with small to medium effect sizes. CONCLUSION: This study establishes the official European Norm for the EORTC CAT Core. The European CAT Norm can be used globally and allows for meaningful interpretation of scores. Furthermore, CAT scores can be compared with sex- and age-adjusted norm scores at a national level within each of the 15 countries.

OBJECTIVE: The computer-adaptive test (CAT) of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC CAT Core, assesses the same 15 domains as the EORTC QLQ-C30 health-related quality of life questionnaire but with increased precision, efficiency, measurement range and flexibility. CAT parameters for estimating scores have been established based on clinical data from cancer patients. This study aimed at establishing the European Norm for each CAT domain based on general population data. METHODS: We collected representative general population data across 11 European Union (EU) countries, Russia, Turkey, Canada and the United States (n ≥ 1000/country; stratified by sex and age). We selected item subsets from each CAT domain for data collection (totalling 86 items). Differential item functioning (DIF) analyses were conducted to investigate cross-cultural measurement invariance. For each domain, means and standard deviations from the EU countries (weighted by country population, sex and age) were used to establish a T-metric with a European general population mean = 50 (standard deviation = 10). RESULTS: A total of 15,386 respondents completed the online survey (n = 11,343 from EU countries). EORTC CAT Core norm scores for all 15 countries were calculated. DIF had negligible impact on scoring. Domain-specific T-scores differed significantly across countries with small to medium effect sizes. CONCLUSION: This study establishes the official European Norm for the EORTC CAT Core. The European CAT Norm can be used globally and allows for meaningful interpretation of scores. Furthermore, CAT scores can be compared with sex- and age-adjusted norm scores at a national level within each of the 15 countries.

Objective: The computer-adaptive test (CAT) of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC CAT Core, assesses the same 15 domains as the EORTC QLQ-C30 health-related quality of life questionnaire but with increased precision, efficiency, measurement range and flexibility. CAT parameters for estimating scores have been established based on clinical data from cancer patients. This study aimed at establishing the European Norm for each CAT domain based on general population data. Methods: We collected representative general population data across 11 European Union (EU) countries, Russia, Turkey, Canada and the United States (n ≥ 1000/country; stratified by sex and age). We selected item subsets from each CAT domain for data collection (totalling 86 items). Differential item functioning (DIF) analyses were conducted to investigate cross-cultural measurement invariance. For each domain, means and standard deviations from the EU countries (weighted by country population, sex and age) were used to establish a T-metric with a European general population mean = 50 (standard deviation = 10). Results: A total of 15,386 respondents completed the online survey (n = 11,343 from EU countries). EORTC CAT Core norm scores for all 15 countries were calculated. DIF had negligible impact on scoring. Domain-specific T-scores differed significantly across countries with small to medium effect sizes. Conclusion: This study establishes the official European Norm for the EORTC CAT Core. The European CAT Norm can be used globally and allows for meaningful interpretation of scores. Furthermore, CAT scores can be compared with sex- and age-adjusted norm scores at a national level within each of the 15 countries.