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Hematopoietic stem cell transplantation is an important treatment for many malignant hematological and non-hematological diseases. Survivors of hematopoietic stem cell transplantation (HCT) are at risk of long-term health problems and reduced quality of life related to previous treatments. Many studies about these long-term effects have been conducted over the last decades. However, selection bias is a concern in long-term follow-up studies and little is known about the non-participating group. As part of the Maastricht Observational study of late effects after Stem cell trAnsplantation (MOSA), investigating long-term health effects by extensively phenotyping HCT survivors, we conducted a survey to characterise the non-participating group. This survey mostly focused on quality of life and physical complaints. The survey responders were generally older than the MOSA group, had more history of relapsed disease, and described their general health as bad or mediocre significantly more often than the MOSA group. Also, more deaths occurred in the group of non-participants between the start of study inclusion in 2015 and analysis of the survey results in 2021. This study suggests that a selection of higher functioning HCT survivors with a relatively better quality of life participated in this long-term follow-up study of stem cell transplantation survivors. These results could also impact the results of other long-term follow-up studies in cancer survivors, knowing that possibly an unhealthier population is missed in these studies and some long-term negative effects of treatments might be underestimated.Trial registration number: NL-48599., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objectives: The MOSA study (Maastricht Observational study of late effects after Stem cell trAnsplantation) aims to study the prevalence of adverse health effects in hematopoietic stem cell transplantation (HCT) survivors compared to a matched cohort, representing the general population., Study Design and Setting: The MOSA study is a matched cohort study, nested within a large prospective cohort, The Maastricht Study. Participants of The Maastricht Study serve as a reference group matched on age, gender, and education to compare MOSA participants to the general population. In both studies, the same study protocol and extensive phenotyping measurements are used., Results: HCT Survivors: Five hundred and thirty nine survivors were invited of which, so far, 123 (23%) participants completed the study assessments. Data will be analyzed and published separately. Reference Group: For each MOSA participant, four reference cases were matched. After matching, both groups are comparable with respect to age, gender, and education., Conclusion: To our knowledge, this is the first study conducting such detailed phenotyping in HCT survivors. Comparison with a large reference group provides essential information about late effects of HCT and associated risk factors. This may improve screening and prevention strategies, potentially leading to a positive impact on morbidity, mortality, and quality of life., (Copyright © 2022 The Author(s). Published by Elsevier Inc. All rights reserved.)

The myeloproliferative neoplasms, including polycythemia vera, essential thrombocythemia and myelofibrosis, are distinguished by their debilitating symptom profiles, life-threatening complications and profound impact on quality of life. The role gender plays in the symptomatology of myeloproliferative neoplasms remains under-investigated. In this study we evaluated how gender relates to patients' characteristics, disease complications and overall symptom expression. A total of 2,006 patients (polycythemia vera=711, essential thrombocythemia=830, myelofibrosis=460, unknown=5) were prospectively evaluated, with patients completing the Myeloproliferative Neoplasm-Symptom Assessment Form and Brief Fatigue Inventory Patient Reported Outcome tools. Information on the individual patients' characteristics, disease complications and laboratory data was collected. Consistent with known literature, most female patients were more likely to have essential thrombocythemia (48.6% versus 33.0%; P<0.001) and most male patients were more likely to have polycythemia vera (41.8% versus 30.3%; P<0.001). The rate of thrombocytopenia was higher among males than females (13.9% versus 8.2%; P<0.001) and males also had greater red-blood cell transfusion requirements (7.3% versus 4.9%; P=0.02) with shorter mean disease duration (6.4 versus 7.2 years, P=0.03). Despite there being no statistical differences in risk scores, receipt of most therapies or prior complications (hemorrhage, thrombosis), females had more severe and more frequent symptoms for most individual symptoms, along with overall total symptom score (22.8 versus 20.3; P<0.001). Females had particularly high scores for abdominal-related symptoms (abdominal pain/discomfort) and microvascular symptoms (headache, fatigue, insomnia, concentration difficulties, dizziness; all P<0.01). Despite complaining of more severe symptom burden, females had similar quality of life scores to those of males. The results of this study suggest that gender contributes to the heterogeneity of myeloproliferative neoplasms by influencing phenotypic profiles and symptom expression., (Copyright© Ferrata Storti Foundation.)

To measure the prevalence of non-pain physical symptoms and psychological symptoms in patients with cancer, to investigate the impact of physical and psychological symptoms on their quality of life (QoL), and to inquire whether treatment had been received for the complaints/symptoms, a representative sample of 1,429 cancer patients were recruited and classified according to tumor type and treatment status [i.e., (1a) curative treatment >6 months ago, (1b) curative treatment

Background Patients with hematological malignancies admitted to an intensive care unit ( ICU) have a poor prognosis. The Sequential Organ Failure Assessment ( SOFA) score is used to monitor patients on the ICU. Little is known about the value of this score in hematology patients. Therefore, the prognostic value of the SOFA score and a modified hematological SOFA score ( SOFAhem) was studied. Methods Patients with hematological malignancies admitted to the ICU between 1999 and 2009 were analyzed in a retrospective cohort study. The SOFAhem score was defined as the original SOFA score omitting the coagulation and neurological parameters. Results In 149 admissions, ICU mortality was 52%. Mortality was significantly associated with higher SOFA and SOFAhem scores on admission, and trend in SOFAhem scores. An unchanged and increased SOFAhem score compared to decreasing SOFAhem scores was associated with a higher mortality rate (53% resp 67% resp 25%). Conclusions Trends in SOFA or SOFAhem score are both suitable as prognostic parameter. The trend in SOFAhem score seems to be independently related to mortality in hematological patients admitted to the ICU, and because of the higher odds ratios and lower P-values compared to the SOFA score, it is probably stronger related to mortality than the classical score, but its prognostic value should be tested in a larger cohort. [ABSTRACT FROM AUTHOR]

Objective: The present study has three aims: first, to evaluate the psychometric properties of the Dutch version of the CARS (CARS-DLV). Second, to measure the prevalence of concerns about disease recurrence in former breast cancer patients and identify potential predictors and third, to establish how fear of recurrence was effecting quality of life. Methods: A prospective study was carried out on breast cancer patients (n=136) who had undergone curative treatment. Eligible patients completed an extensive questionnaire consisting of the CARS (fear of recurrence), HADS (anxiety and depression), BPI (pain), RAND (quality of life), LOT (optimism) and the PCS (catastrophzing). Results: This study confirmed the good internal consistency, test–retest stability and construct validity of the CARS (Dutch Language version). Moderate to high levels of fear of disease recurrence were found in 56% of 136 breast cancer survivors. Worries about health and death were the most prominent. Pain was a strong predictor of overall fear and of fear on the four sub domains of the CARS. The prevalence of fear decreased significantly with age. Education level, living arrangements and time since the last treatment did not predict the prevalence of overall fear. Fear of recurrence was negatively correlated with quality of life. Conclusion: The CARS-DLV proved to be a valuable instrument to measure women's' concerns about breast cancer recurrence. More than half of former breast cancer patients indicated moderate to severe concerns about disease recurrence. Health and death worries were the most prominent. The levels of worry were independent of the time since diagnosis. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Although increasing data are available on quality of life (QOL) issues after stem cell transplantation (SCT), many issues are still unresolved. With the increasing use of transplants in non-curative situations, quality of life issues have become especially important. Methods: All patients who had undergone SCT and had no recurrent disease were asked to provide quality of life data using the EORTC QLQ-C30 questionnaire at about 2.5 (n=52) and 4.5 years (n=33) after transplantation. In addition, the patients’ partners and physicians were asked to estimate the patients’ quality of life. Results: Scores on the functional scales ranged from 65 to 80 and were comparable initially and at the 23-month follow-up. The initial, overall quality of life of the patients was 75. After an additional 23-month follow-up, the overall quality of life was 73. Fatigue, sleeping disturbances, and financial problems scored relatively high. Generally, in contrast to partners, physicians underestimated symptoms and overestimated functions and quality of life significantly. Conclusions: We conclude that SCT has a long-term impact on such quality of life issues as fatigue, sleep disturbances, dyspnea, and financial problems. Physicians tend to overestimate quality of life in their patients. With the increasing numbers of patients undergoing transplantation, more attention should be focussed on these issues. [Copyright &y& Elsevier]

Using the Center for Internaitonal Blood and Marrow Transplant Research (CIBMTR) data, we compared the transplant outcomes of patients with chronic myelogenous leukemia (CML) who were nonsmokers (NS) and past or current smokers (PCS). There were 2193 NS and 625 PCS who received matched sibling and unrelated donor allografts for CML in first chronic phase. We looked for dose effects and identified low and high dose smoking groups (>10 pack years, >1 pack per day). Outcomes were adjusted for known prognostic variables including the European Group for Blood and Marrow Transplant (EBMT) risk score. In multivariate analyses of sibling allograft recipients, relapse risk (RR) was higher (RR=1.67, P =.003) in smokers than NS, but the dose effects were not consistent. High-dose smokers experienced a 50% treatment-related mortality (TRM) versus 28% in the NS group at 5 years on univariate analysis, and the RR was 1.57 (P =.005) on multivariate analysis. Overall survival (OS) at 5 years was 68% in NS versus 62% in the low-dose smoking group versus 50% in the high-dose smoking group (P < .001). Smoking did not significantly affect outcomes in unrelated donor recipients, but numbers were smaller. High-dose smoking is associated with a reduction in OS in patients having sibling allografts for CML. A prospective study with detailed demographic, pulmonary function, and quality-of-life data would improve our understanding of this issue. [Copyright &y& Elsevier]