Background: Health‐related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non‐Hodgkin‐lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high‐grade (HG)‐ and low‐grade (LG)‐NHL: the EORTC QLQ‐NHL‐HG29 and the EORTC QLQ‐NHL‐LG20 to supplement the core questionnaire (EORTC QLQ‐C30).Methods: Overall, 768 patients with HG‐NHL (N = 423) and LG‐NHL (N = 345) from 12 countries completed the QLQ‐C30, QLQ‐NHL‐HG29/QLQ‐NHL‐LG20 and a debriefing questionnaire at baseline, and a subset at follow‐up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49).Results: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ‐NHL‐HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ‐NHL‐LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test–retest reliability, convergent validity, known‐group comparisons, and RCA find satisfactory results of both measures. A total of 31%–78% of patients with HG‐NHL and 22%–73% of patients with LG‐NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without.Discussion: The use of the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision‐making.Plain language summary: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health‐related quality of life. The questionnaires are for patients with high‐grade or low‐grade non‐Hodgkin lymphoma. They are called the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.

Understanding patients’ decision-making preferences is crucial for enhancing patients’ outcomes. The current study aims to identify Jordanian advanced cancer patients’ preferred decision-making and to explore the associated variables of the passive decision-making preference. We used a cross-sectional survey design. Patients with advanced cancer referred to the palliative care clinic at a tertiary cancer center were recruited. We measured patients’ decision-making preferences using the Control Preference Scale. Patients’ satisfaction with decision-making was assessed with the Satisfaction with Decision Scale. Cohen’s kappa statistic was used to assess the agreement between decision-control preferences and actual decision-making, and the bivariate analysis with 95% CI and the univariate and multivariate logistic regression were used to examine the association and predictors of the demographical and clinical characteristics of the participants and the participants’ decision-control preferences, respectively. A total of 200 patients completed the survey. The patients’ median age was 49.8 years, and 115 (57.5%) were female. Of them, 81 (40.5%) preferred passive decision control, and 70 (35%) and 49 (24.5%) preferred shared and active decision control, respectively. Less educated participants, females, and Muslim patients were found to have a statistically significant association with passive decision-control preferences. Univariate logistic regression analysis showed that, being a male (p = 0.003), highly educated (p = 0.018), and a Christian (p = 0.006) were statistically significant correlates of active decision-control preferences. Meanwhile, the multivariate logistic regression analysis showed that being a male or a Christian were the only statistically significant predictors of active participants’ decision-control preferences. Around 168 (84%) of participants were satisfied with the way decisions were made, 164 (82%) of patients were satisfied with the actual decisions made, and 143 (71.5%) were satisfied with the shared information. The agreement level between decision-making preferences and actual decision practices was significant (ⱪ coefficient = 0.69; 95% CI = 0.59 to 0.79). The study’s results demonstrate that a passive decision-control preference was prominent among patients with advanced cancer in Jordan. Further studies are needed to evaluate decision-control preference for additional variables, such as patients’ psychosocial and spiritual factors, communication, and information sharing preferences, throughout the cancer trajectory so as to inform policies and improve practice.

Hodgkin lymphoma (HL) has become 1 of the most curable cancers. Therefore, rigorous assessment of health-related quality of life (HRQoL) and symptom burden of these patients is essential to support informed clinical decisions. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group previously developed the EORTC Quality of Life Questionnaire (QLQ) Hodgkin Lymphoma 27. This paper reports the final results of an international study by the EORTC group to develop a HRQoL disease-specific measure for these patients: the EORTC QLQ-HL27. Patients with a confirmed diagnosis of HL (N = 381) were enrolled from 12 countries and completed the EORTC QLQ-C30, QLQ-HL27, and a debriefing questionnaire at baseline (any time after diagnosis). A subset completed a retest (n = 126) or responsiveness-to-change analyses (RCA) second measurement (n = 98). Psychometrics were evaluated. Confirmatory factor analysis showed an acceptable fit of the 27 items of the QLQ-HL27 on its 4 scales (symptom burden, physical condition/fatigue, emotional impact, and worries about health/functioning). Test–retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results. Symptom burden and fatigue was higher among patients on treatment (with 36%-83% reporting at least a few problems) compared with those who had completed treatment (19%-61% reporting at least a few problems). Prevalence of worries about health and functioning (reporting at least some worry) was similar for patients on treatment (51%-81%) vs those who had completed treatment (52%-78%). Implementation of the EORTC QLQ-HL27 in research and clinical applications will increase sensitivity of HRQoL assessment in patients with HL. High quality data generated through use of this questionnaire are expected to facilitate clinical decision making in the HL setting.

Advances in cancer care require ongoing monitoring of patient satisfaction using rigorous questionnaires. The EORTC Quality of Life Group has cross-cultura

Purpose This multi-national cross-sectional study assessed socio-demographic and clinical determinants of satisfaction with cancer care in patients enrolled from hospital inpatient and outpatient settings. Methods Six hundred ninety consecutive patients with any cancer type or stage including 558 outpatients were approached between October 2019 and October 2023 in 12 countries (20 cancer centres) from Asia, Europe, the Middle East and South America. Among them, 675 (98%) and 521 (93%) completed the EORTC PATSAT-C33 and the OUT-PATSAT7, respectively. Multi-level analyses were performed accounting for institutional differences in satisfaction with care. Results Self-reported quality of life was positively related to all thirteen PATSAT-C33 and OUT-PATSAT7 satisfaction with care domains. Treatment toxicities and the absence of comorbidity predicted lower satisfaction with nine and ten care domains, respectively. Patients in day hospitals were significantly less satisfied with nurses’ availability, care coordination and health professionals’ information. Tumour site predicted satisfaction with care transition hospital-home. Not being married/with a partner and shorter travels to the hospital predicted less satisfaction with five and two care domains, respectively. Conclusion This study illustrates the value of collecting patients’ feedback on their cancer care experience. It informs health policy, pointing out targets for improving satisfaction with cancer care across several institutions and cultures worldwide. Trial registration ClinicalTrials.gov under ID: NCT05989191, August 2, 2023