Background In patients with hematologic malignancies, COVID-19 vaccine effectiveness is unknown and determinants of severe COVID-19 lack granularity.Methods To identify determinants of SARS-CoV-2 infection outcome we conducted a population-based, nationwide cohort study, including all adult Dutch residents who tested positive for SARS-CoV-2 between 1 June 2020, and 31 March 2022. Individuals were classified as having a (history of) hematologic malignancy, solid malignancy, or no malignancies. Primary outcome was severe COVID-19, defined as COVID-19-related hospitalization or death following first SARS-CoV-2 infection.Results Among 4 649 341 included individuals, those with hematologic malignancies were at highest risk of severe COVID-19. Vaccine effectiveness against severe COVID-19 in patients with hematologic malignancies was up to 74% (95% CI, 60% to 83%), depending on the SARS-CoV-2 variant period, the number of received vaccinations, and the time interval since vaccination. Risk of severe COVID-19 was highest for patients with recently diagnosed hematologic malignancies and declined over time, except for patients with chronic hematologic malignancies. Risk of severe COVID-19 tended to be higher in patients on tumor-specific treatment such as CD38 and CD20 antibodies, proteasome inhibitors, and protein kinase inhibitors.Conclusions COVID-19 vaccination lowered the risk of severe COVID-19 in SARS-CoV-2-infected patients with hematologic malignancies, although these patients remained at elevated risk compared with others. Determinants of severe COVID-19 included type of malignancy, time interval between malignancy diagnosis and SARS-CoV-2 infection, and treatment. These data can guide healthcare professionals in designing additional prevention and therapeutic strategies against respiratory virus infections for patients with hematologic malignancies.
BACKGROUND:DNA methylation analysis provides a promising triage strategy for cervical intraepithelial neoplasia (CIN) and cancer detection following Human Papillomavirus (HPV) testing on self-collected samples, including urine. METHODS:This study aimed to develop an entirely molecular cervical screening approach based on HPV and DNA methylation analysis in at-home collected first-void urine from healthy females (n = 69) and a referral population (n = 385; CIN-cancer). CIN3+ detection was analyzed by multivariate logistic regression. RESULTS:Here we show that urinary ASCL1/LHX8 methylation levels increase significantly in relation to disease severity, with AUC-values for CIN3+ of 0.81 (95% CI: 0.74-0.88) and 0.83 (95% CI: 0.74-0.92) in the training (n = 285) and validation cohort (n = 160), respectively. This corresponds to a validated CIN3+ sensitivity of 73.0% (95% CI: 57.0-84.6%) at 81.9% specificity (95% CI: 73.5-88.1%; <CIN2). Urinary HPV testing is more sensitive (83.8%; 95% CI: 68.9-92.3%) although less specific (59.6%; 95% CI: 50.0-68.5%). For triage of HPV positives, ASCL1/LHX8 methylation and HPV16/18 genotyping have a similar CIN3+ sensitivity (75.0%; 95% CI: 62.8-84.2% vs 73.3%; 95% CI: 61.0-82.9%), with lower genotyping specificity. Combining ASCL1/LHX8 methylation with HPV16/18 genotyping yield a 85.0% sensitivity (95% CI: 73.9-91.9%) at 50.5% specificity (95% CI: 40.8-60.1%). CONCLUSIONS:The ASCL1/LHX8 methylation test detects nearly all cancers and a majority of CIN3 in first-void urine, supporting the potential of full molecular screening in urine by primary HPV testing and methylation triage.
CONTEXT:The World Health Organization (WHO) recognizes adenocarcinoma in situ (AIS) of the lung for tumors up to 3 cm in size. Larger tumors with a lepidic growth pattern are classified as invasive lepidic predominant adenocarcinoma. OBJECTIVE:The aim of this study was to demonstrate that pulmonary non-mucinous lesions with adenocarcinomas in situ morphology, but larger than 3 cm and even larger than 7 cm exist. MATERIAL AND METHODS:From two patients with an extensive pneumonia-like pattern on radiological imaging, complete histological embedding of the affected lobe was performed. In addition, from a nationwide retrospective pT3N0M0 cohort a subset of 112 adenocarcinoma patients, characterized by tumors exceeding 7 cm in diameter, was subjected to further analysis. Follow-up data for potential non-invasive cases were collected, their radiological findings reviewed, and comparisons made with matched controls. RESULTS:In two patients the entire lobe was examined, with 130 and 312 tissue blocks, respectively. The histological diagnosis was lepidic growth, without any signs of invasion, as seen in AIS. Both cases had a pT size of 16 cm. In a subset of the T3N0 cohort, 3 out of 112 cases were retrospectively identified as purely non-invasive lepidic proliferations. Radiological imaging revealed consolidation and ground-glass pattern, like that observed in pneumonia and follow-up showed a recurrence-free survival. CONCLUSIONS:Pulmonary non-mucinous proliferation with adenocarcinoma in situ morphology may become much larger than the 3 cm WHO threshold for AIS and may present with a pneumonia type pattern on CT imaging. The restriction of the 3 cm size criterion for AIS may therefore be reconsidered. A serious consequence for the pathology practice is that the whole lesion of such cases needs to be sampled, to exclude invasion.
Importance:Adverse effects of cancer and its treatment may hamper return to work (RTW) among patients with head and neck cancer (HNC). Objectives:To investigate RTW among patients with HNC from end of treatment to 5 years after treatment and associations of RTW with sociodemographic, clinical, work-related, personal, lifestyle, physical, and psychological factors and cancer-related symptoms. Design, Setting and Participants:This prospective, longitudinal, multicenter cohort study of patients with HNC used data from the Netherlands Quality of Life and Biomedical cohort. This study focused on patients younger than 65 years (with a subanalysis of patients younger than 60 years) from time of cancer diagnosis (March 2014 to June 2018) to 5 years after end of treatment (January 2019 to July 2023). Data analysis occurred from April 2023 to August 2024. Exposure:Standard clinical care. Main Outcomes and Measures:Work status was measured at 3 and 6 months, and 1, 2, 3, 4, and 5 years after treatment using an adjusted version of the Productivity Cost Questionnaire. Cox regression analyses were performed to investigate factors (baseline, 3 months, and 6 months) associated with time to RTW. Results:A total of 184 patients with HNC younger than 65 years (mean [SD] age, 55.4 [7.0] years; 146 men [79%]) were included and 77 (42%) had oropharyngeal cancer. RTW increased from 26% (42 of 160 individuals) at 3 months to 65% (89 of 137 individuals) at 1 year, after which it reduced to 52% (51 of 98 individuals) at 5 years. At 5 years after treatment, an additional 28 of 98 participants (29%) were retired. Minor surgery (vs major surgery) was associated with faster RTW from end of treatment onwards (hazard ratio [HR], 2.73; 95% CI, 1.17-6.37). Older age (HR, 0.97; 95% CI, 0.94-0.999) and more fatigue at 3 months (HR, 0.99; 95% CI, 0.98-0.995) were associated with slower RTW from 3 months onwards. Older age was also associated with slower RTW from 6 months onwards (HR, 0.96; 95% CI, 0.93-0.998). Among the 127 patients with HNC younger than 60 years, RTW was 72% (47 individuals) at 5 years after treatment. Advanced tumor stage (HR, 0.59; 95% CI, 0.39-0.90) and more fatigue (HR, 0.99; 95% CI, 0.98-0.999) were associated with slower RTW in this group. Conclusion and relevance:This cohort study found that the majority of patients with HNC in the Netherlands returned to work within 1 year and that certain sociodemographic and clinical factors and cancer-related symptoms were associated with time to RTW. These results may inform patients with HNC and provide insight into potential targets, such as fatigue, to improve RTW.
BACKGROUND:Ocrelizumab (OCR) is widely and effectively used to treat multiple sclerosis (MS). Available evidence suggests that rituximab (RTX), another anti-CD20 monoclonal antibody used off-label in some countries, may be equally effective and safe. However, current data comparing RTX and OCR come from retrospective observational cohorts with conflicting conclusions. Higher-quality evidence is needed to guide treatment decisions when choosing between RTX and OCR for MS. To address this high priority research question, four randomized controlled trials (OVERLORD-MS, DanNORMS, Noisy Rebels, TRIO) are evaluating the non-inferiority of RTX compared to OCR and have formed a collaborative initiative (ROC-MS) to conduct an individual participant data (IPD) prospective meta-analysis (PMA). METHODS:In the PMA, core outcomes are harmonized across the four trials. IPD will be obtained from active relapsing-remitting MS (RRMS) patients. Primary outcome is relapse in a re-baselined period from month 6 to month 24 and a non-inferiority hypothesis will be tested. Secondary outcomes include other clinical, patient-reported, radiological, blood biomarkers, and safety measures. Collectively, the studies in the collaboration will provide data from 1109 RRMS patients: 660 receiving RTX and 449 receiving OCR. Patient recruitment has started at all sites and has been completed at two sites, as of October 2025. CONCLUSION:This ROC-MS collaboration will improve the precision of the estimates, increase statistical power for outcomes and assessment of rare events and facilitate subgroup analyses, ultimately providing robust evidence on the efficacy and safety of RTX compared to OCR in RRMS treatment. Results are expected in 2028.
INTRODUCTION:Infection causes significant morbidity and mortality in pediatric acute myeloid leukemia (pAML). This study describes the incidence and risk factors of bloodstream infection (BSI) and invasive fungal infection (IFI) in pAML. METHODS:A retrospective chart review was performed of patients treated according to the ANLL-97/AML-12 (N = 116), AML-15 (N = 60), or DB AML-01 (N = 67) protocols between 1998 and 2014. Cumulative incidence was analyzed for infectious outcomes (any BSI, viridans group streptococci [VGS-BSI], Gram-negative rod [GNR-BSI], IFI). Risk factors were analyzed in multivariable models. Recurrent event analyses were performed to evaluate whether previous infection(s) were related to subsequent infection. RESULTS:The cumulative incidence of any BSI was 78%, VGS-BSI 35%, GNR-BSI 15%, and IFI 11% through Day 150. Incidence of GNR-BSI decreased over time; AML-15 hazard ratio ([HR] 0.37, 95% confidence interval [CI]: 0.14-0.98, p = 0.045) and DB AML-01 (HR 0.42, 95% CI: 0.18-0.97, p = 0.042) compared to ANLL-97/AML-12. White blood cell counts ≥20 × 109/L at diagnosis and older age were associated with lower infection risk. Recurrent event analyses showed a higher risk of subsequent BSI for patients who had two or more prior BSIs. CONCLUSION:Despite efforts to improve supportive care in pAML, only GNR-BSI cumulative incidence declined over time. Future studies should continue working toward decreasing the incidence of infection while maintaining treatment efficacy.
Neurofilament light(NfL) and glial fibrillary acidic protein(GFAP) are associated with disease activity in multiple sclerosis(MS), however use in monitoring remains limited. The ability of these biomarkers to detect disease activity upon treatment discontinuation was studied. Long-term stable relapse-onset MS patients were to continue or discontinue their first-line disease-modifying therapy(DMT) to study the safety of DMT discontinuation(DOT-MS trial NCT04260711). “Significant” disease activity was defined as clinical relapse, ≥3 new lesions or ≥2 contrast-enhancing lesions. MRI and sampling were performed at baseline, month 3, 6, 12, 18 and 24. Associations of delta biomarker levels and NfL z-score(age and body mass index derived) with “significant” disease activity were tested. Cut-off values for biomarkers to detect disease activity were calculated. 45(50.5
Background Natalizumab is a highly effective drug for patients with relapsing-remitting multiple sclerosis (MS). A disadvantage of this treatment is the risk of progressive multifocal leukoencephalopathy in patients who are seropositive for the John Cunningham virus (JCV). JCV seroconversion rates increase under natalizumab treatment compared with non-natalizumab using controls. The aim of this study was to assess whether lower natalizumab trough concentrations are associated with reduced JCV seroconversion compared with higher natalizumab trough concentrations. Methods Two overlapping cohorts of patients treated with intravenous natalizumab in the Netherlands were combined for this study. JCV seroconversion was assessed during periods of high (≥15 µg/mL) and low (<15 µg/mL) natalizumab trough concentrations. Low trough concentrations were mainly the result of trough concentration guided personalised extended interval dosing (EID). The seroconversion rates during high and low trough concentrations were compared using a generalised linear mixed model with a Poisson link function. Results A total of 357 patients from 21 hospitals in the Netherlands were included. The annual seroconversion rate of 8.4% observed in patients during periods of high trough concentrations (n=226) was 2.32 times higher than the seroconversion rate of 4.8% in patients during periods of low trough concentrations (n=252) (95% CI=1.32 to 4.08, p=0.0035). Conclusions The seroconversion rate observed in patients with MS with low trough concentrations was substantially lower compared with those with high trough concentrations during natalizumab treatment. This emphasises the importance of personalised EID, where intervals between infusions are prolonged to achieve lower natalizumab trough concentrations, to increase drug safety.
Background: All stage III colon cancer (CC) patients are recommended adjuvant chemotherapy (ACT) after surgery, while over half are already cured by surgery alone. The prognostic biomarker circulating tumor DNA (ctDNA) could potentially guide the decision on whom to withhold ACT. Objective: We assessed the cost-effectiveness of ctDNA-guided ACT de-escalation in stage III CC. Design: A decision model “PATTERN-stageIII” simulates CC from diagnosis till death in surgically treated stage III patients. Methods: We evaluated administering ACT in all patients (i.e., All ACT strategy), and three ACT de-escalation strategies by omitting ACT in patients who are (Strategy 1) both pT1-3N1 and ctDNA-negative, (Strategy 2) pT1-3N1, have no vascular invasion, and are ctDNA-negative, and (Strategy 3) pT1-2N1 and ctDNA-negative. For each strategy, costs, quality-adjusted life years (QALYs), and net monetary benefit were estimated. Sensitivity analyses assessed changes in ACT effectiveness and ctDNA-related parameters. Results: In de-escalation strategies 1, 2, and 3, respectively, 52%, 61%, and 88% of patients were predicted to receive ACT, thereby losing 0.322, 0.237, and 0.034 QALYs per person. The “All ACT strategy” was preferred in terms of cost-effectiveness. Sensitivity analyses demonstrated scenarios where ctDNA-guided de-escalation strategies were cost-effective compared to “All ACT,” including improved ACT treatment effect in ctDNA-positive patients, higher ctDNA positivity rates, enhanced ctDNA prognostic value, and/or reduced ctDNA testing costs. Conclusion: ctDNA-guided strategies for ACT de-escalation are currently not cost-effective compared to an “All ACT strategy.” One explanation is the non-negligible recurrence risk in ctDNA-negative patients. ctDNA-guided strategies could potentially become cost-effective if more than two ctDNA-related parameters improve simultaneously.
PURPOSE:He ad and neck cancer (HNC) can trigger a significant mental health burden, including psychoneurological symptoms (PNS). Better insight into the profiling of PNS is important for advancing personalized mental health screening and management. METHODS:Data from 538 newly diagnosed adult HNC patients participating in a prospective multicenter cohort study (NET-QUBIC) were used. Questionnaires were used to assess PNS. Sociodemographic, clinical, lifestyle, and biological variables were collected. Latent class analysis was performed to identify differential classes of PNS. Between-class comparisons and multivariable logistic regression analyses were conducted to characterize each profile in relation to sociodemographic, clinical, lifestyle, and biological variables. RESULTS:Fit indexes supported a three-class solution, with patients distributed in mild (60%), moderate (26%), and severe (14%) PNS classes. Pain and sleep problems were featured in all classes, anxiety and depression in the moderate and severe classes, and fatigue only in the severe class. Patients in the moderate and severe classes were more often women, had oral cavity cancer, showed impaired performance, had a history of anxiety and depression disorders, were daily smokers, had higher CRP, and had a flatter cortisol slope compared to the mild class. CONCLUSION:Newly diagnosed HNC patients can be classified according to the severity of PNS. Several sociodemographic, clinical, lifestyle, and biological variables are proposed as drivers for early detection and treatment of mental health burden.
To identify clinical characteristics, anatomical distribution and risk factors of arteriovenous fistula in the head and neck area (hAVF). A systematic review and meta-analysis on individual participant data of available literature from inception to September 2024 on extracranial and extradural hAVF was performed. The systematic search resulted in an inclusion of 869 cases with a median age of 35 years and 58.5
BACKGROUND:Guidelines recommend cisplatin as the preferred platinum agent in the first-line treatment for small cell lung cancer (SCLC), especially limited-stage disease (LS-SCLC). However, during the COVID-19 pandemic, carboplatin use likely increased due to logistical advantages. We evaluated the pandemic's impact on platinum agent utilization in the Netherlands and compared overall survival (OS) and safety between cisplatin and carboplatin. METHODS:Using Netherlands Cancer Registry data, first-line platinum-based treatments for LS-SCLC and extensive-stage SCLC (ES-SCLC) between 2018 and 2023 were analyzed. OS was evaluated using univariable and multivariable analyses. Grades 3-5 treatment-related adverse events were studied in three hospitals. FINDINGS:Overall, 1683 LS-SCLC (carboplatin, N = 1011[60 %]; cisplatin, N = 672[40 %]) and 3668 ES-SCLC (carboplatin, N = 3002[82 %]; cisplatin, N = 666[18 %]) patients were included. During the pandemic, quarterly usage rates of carboplatin reached up to 81 % and 90 % in LS-SCLC and ES-SCLC, respectively. In LS-SCLC, univariable analysis showed significantly shorter median OS with carboplatin compared to cisplatin (17.9m vs. 26.3m; HR, 1.48; 95 %CI, 1.31-1.68; p < 0.001). Similar findings were observed in ES-SCLC (8.0m vs. 9.3m; HR, 1.19; 95 %CI, 1.09-1.30; p < 0.001). However, multivariable analyses, after adjusting for confounders, showed no significant OS differences in either LS-SCLC (HR, 1.06; 95 %CI, 0.90-1.25; p = 0.463) or ES-SCLC (HR, 1.01; 95 %CI, 0.92-1.12; p = 0.785). Confounders were performance status (PS), age, sex, and chemoradiotherapy type for LS-SCLC, and PS, age, sex, stage, and liver metastases for ES-SCLC. Hematologic toxicity was higher with carboplatin, while cisplatin led to more nonhematologic toxicity. INTERPRETATION:These findings challenge the long-standing belief of cisplatin's superiority and support the adoption of carboplatin in SCLC.
OBJECTIVES:Hearing impairment can negatively impact socio-emotional well-being. While hearing aids (HA) may improve hearing ability, communication, social participation, and emotional well-being, longitudinal studies are scarce and evidence quality is low. This longitudinal study examines the associations between (research question [RQ] 1) HA uptake and socio-emotional well-being, mediation by self-perceived hearing disability, and differences between subgroups, (RQ2) frequency of HA use (daily number of hours) and socio-emotional well-being, and (RQ3) duration of HA use (years of use) and socio-emotional well-being. DESIGN:Data from October 2006 to January 2024 from the Netherlands Longitudinal Study on Hearing were used for this study. Every 5 yrs, participants were invited to complete an online digits-in-noise hearing test and survey, which included variables on HA use, psychosocial health, tinnitus, hyperacusis, and self-perceived hearing disability. For RQs 1 and 2, cumulative data from three 5-yr intervals (baseline [T0] to 5-yr follow-up [T1], T1-T2, and T2-T3) was compiled, based on eligibility for a HA at the beginning of the studied time interval but not using it at that time and either reporting HA use (HA uptake) or no HA use (no HA uptake) at follow-up and frequency of use at follow-up. Differences between those who adopted a HA versus those who did not were examined while controlling for pre-(non)uptake socio-emotional outcomes. After applying exclusion criteria, the final samples included n = 281 unique participants for RQ1 and n = 280 for RQ2. For RQ3, participants with 5, 10, or 15 yrs of HA use were identified and analyzed to assess the impact of long-term use, with n = 180 unique participants in the final dataset. Outcomes assessed for each RQ were depression, anxiety, distress, somatization, social loneliness, emotional loneliness, and total loneliness. Gamma regression models with generalized estimating equations were performed to analyze all RQs. RESULTS:Approximately 87% of participants were ≤65 yrs of age at T0. Among individuals without tinnitus, HA uptake was significantly associated with lower depression scores ( p < 0.05). Among those aged >65 yrs, HA uptake was significantly associated with lower total loneliness scores. No significant associations were found between HA uptake and anxiety, somatization, distress, and emotional loneliness. Self-perceived hearing disability did not mediate the relationship between HA uptake and socio-emotional well-being outcomes. No significant associations between the duration of HA use and socio-emotional well-being outcomes were found. Frequency of HA use was not significantly associated with any outcome except somatization, where using a HA for 1 to 4 hrs per day was significantly associated with lower somatization scores. CONCLUSIONS:This longitudinal study contributes valuable evidence to the growing body of research on the psychosocial benefits of HAs, highlighting both the potential and the limitations of device use in improving well-being. Results suggest that audiologists might consider integrating psychosocial support as part of a comprehensive treatment approach beyond simply recommending HA adoption or increased usage.
Background. Thrombocytopenia is a major temozolomide-induced adverse event during the standard treatment of glioblastoma. Consequently, platelet transfusions and treatment modifications may impact quality of life and long-term treatment outcomes. Understanding the impact of thrombocytopenia on healthcare utilization is crucial to mitigate the need for healthcare resources in glioblastoma patients. Here, we assess the influence of thrombocytopenia-related healthcare among patients diagnosed with glioblastoma. Methods. We retrospectively collected patient information treated at the Brain Tumor Center Amsterdam between 2008 and 2021. The occurrence of thrombocytopenia, patient demographics, treatment details, and healthcare utilization data were gathered from patients who received standard glioblastoma treatment. Associations between temporal severity of thrombocytopenia as categorized by the Common Terminology Criteria for Adverse Events, patient characteristics, and healthcare utilization were analyzed using Generalized Linear Mixed Models. Results. We included 206 patients with a median age of 58 years, 35.9% were female and we found that thrombocytopenia (any grade) occurred in 61.1% of patients. The occurrence of thrombocytopenia during CRT was associated with increased healthcare utilization and was largest in females who developed grade 4 thrombocytopenia compared to those who did not develop thrombocytopenia (OR = 5.9, P < .001 in females vs OR = 4.4, P < .001 in males). Grade 4 thrombocytopenia was also associated with heightened healthcare utilization during the adjuvant phase (OR = 7.6, P < .001), and was comparable between sexes. Conclusions. Severe thrombocytopenia during glioblastoma treatment is linked to increased healthcare utilization, disproportionally impacting females. These data suggest that prevention and early management of thrombocytopenia can reduce healthcare utilization in patients with glioblastoma. Key Points Thrombocytopenia occurs in over half of glioblastoma patients receiving treatment. Thrombocytopenia results in increased healthcare utilization. Females are mainly affected in healthcare use when thrombocytopenia occurs.
BACKGROUND:High-resolution anoscopy (HRA) to prevent anal cancer is complex and screening capacity is limited. Previously, DNA methylation analysis of anal high-grade squamous intraepithelial lesion (HSIL) biopsies was shown to distinguish between HSIL with an increased and a low cancer risk, supporting personalized treatment. Here, methylation analysis on anal swabs was assessed to detect underlying HSIL with an increased cancer risk. METHODS:A cross-sectional series of paired anal swabs and biopsies of 215 persons with human immunodeficiency virus and swabs of 19 cancer patients were tested for 6 methylation markers. Data were analyzed by logistic regression analysis. The primary endpoint was methylation-positive biopsy HSIL (M+ HSIL), indicating increased cancer risk. Test performance of methylation markers, human papillomavirus (HPV), and/or cytology, and cancer detection and HRA referral, were calculated. RESULTS:Anal cancer swabs showed highest methylation. ZNF582 and panels ASCL1/ZNF582 and LHX8/ZNF582 yielded an area under the curve of 0.68-0.70 to detect underlying M+ HSIL. Methylation at 80% sensitivity corresponded to 43% fewer patients requiring HRA, without missing any cancers and detecting 79% of HPV-16-positive HSIL-AIN3. Methylation/HPV and cytology/HPV co-testing performed similarly. CONCLUSIONS:Methylation levels in anal swabs reflect underlying anal disease. Methylation analysis could reduce HRA referrals substantially, while maintaining a high sensitivity for M+ HSIL and detecting all cancers. These results encourage screening on anal swabs to preselect patients needing HRA.
ABSTRACT:Patient-reported outcomes (PROs) give direct insights into the treatment's impact on patient's life and complement clinical outcomes. However, since the advent of chimeric antigen receptor T-cell therapy (CAR-T), PROs have been underreported. Particularly, little is known about long-term health-related quality of life (HRQoL) and dimensions such as mental- and social well-being, working life, and financial burden. Therefore, we evaluated multidimensional PROs in a cross-sectional study among European patients who received CAR-T for hematologic malignancies. Patients completed validated questionnaires (EQ-5D-5L/EORTC-QLQ-C30/PCL-5/modified-iPCQ) and ad hoc items on treatment experiences, unmet care needs, and HRQoL. The survey was available online (January-October 2023) in 7 languages. Outcomes were compared with the European general population, a matched CAR-T-naive cohort with hematologic malignancies and across subgroups, using established thresholds for clinically important differences/problems and regression models. From 10 European countries, 389 patients participated (>1 year post-CAR-T: 56%). Mean EQ-VAS was 73.1 (standard deviation, 18.5). HRQoL was similar or better than reference cohorts, except for role-, social-, and cognitive-functioning. Physical-functioning problems were most frequently reported (41%), particularly by women, older individuals, and those who experienced neurotoxicity. The latter subgroup also reported more cognitive- and social-functioning problems. Anxiety regarding disease recurrence (76%), infections (66%) and long-term side effects (59%) was common. Among working-age patients, 72% could continue paid work after CAR-T. Younger patients (32%) reported more financial difficulties than older patients (9%). This study shows favorable general HRQoL after CAR-T compared with reference cohorts. However, a notable proportion of patients experienced problems in physical-, mental- and social well-being. We identified high-risk subgroups and care needs that should be addressed during follow-up.
Background Evidence is lacking on the most effective values clarification methods (VCMs) in patient decision aids (PtDAs). We tested the effects of an adaptive conjoint analysis (ACA)-based VCM compared with a ranking-based VCM and no VCM on several decision-related outcomes, with the decisional conflict and its subscale "perceived values clarity" as primary outcomes.Design Online experimental study with 3 conditions: no VCM versus ranking-based VCM versus ACA-based VCM (N = 282; Mage = 63.11 y, s = 12.12), with the latter 2 conditions including attributes important for a lung cancer treatment decision. We assessed 1) decisional conflict, 2) perceived values clarity (decisional conflict subscale), 3) perceived cognitive load, 4) anticipated regret, 5) ambivalence, 6) preparedness for decision making, 7) hypothetical treatment preference, and 8) values congruence (proxy). We performed analysis of covariance and linear regression. Age and level of deliberation were included as potential moderators, and we controlled for subjective numeracy (covariate). We exploratively tested the moderating effects of subjective numeracy and health literacy (without covariates).Results We found no significant effect of type of VCM on overall decisional conflict or perceived values clarity. Age had a moderating effect: in younger participants, no VCM (v. ranking-based VCM) led to more values clarity, while in older participants, a ranking-based VCM (v. no VCM) led to more values clarity. Completing the ACA-based VCM, compared with no VCM, resulted in more values congruence.Limitations The hypothetical choice situation might have induced lower levels of cognitive/affective involvement in the decision.Conclusions This study found mixed effects of an ACA-based VCM. It did not decrease decisional conflict or increase perceived values clarity, yet it did improve values congruence.Implications Completion of an ACA-based VCM in a PtDA may increase values congruence.
ABSTRACT Introduction After colorectal cancer (CRC) treatment, patients undergo five‐year follow‐up involving carcinoembryonic antigen (CEA) tests, imaging, and colonoscopies. This retrospective cohort study explores adherence to the CRC follow‐up guideline in the Netherlands until 2021 and its association with treatment of recurrences with curative intent. Methods Stage II/III CRC patients with recurrent disease within 3 years after diagnosis were selected from the Netherlands Cancer Registry (n = 430). Adherence to CEA tests, imaging, and colonoscopy was classified as ‘according to/more follow‐up’ or ‘less follow‐up’ than recommended. Logistic regression analyses examined factors associated with receiving less follow‐up and the relationship between ‘follow‐up adherence’ and ‘treatment with curative intent’, potentially mediated by ‘mode of detection’ (symptomatically vs. routine test). Results In total, 18.3% patients had fewer CEA tests, 41.4% fewer imaging, and 56.1% fewer colonoscopies than recommended. Factors associated with fewer follow‐up moments were tumor localization, age (≥ 75 years), comorbidities, tumor differentiation and adjuvant chemotherapy. Patients receiving fewer CEA tests faced 4.8 times higher odds (95% CI: 2.9–8.1) of symptom‐detected recurrence and were less likely to be curatively treated (OR = 0.5; 95% CI: 0.3–0.9). Mediation analysis indicated a significant average causal mediation effect (p = 0.003), emphasizing the mediating role of mode of detection. Receiving fewer imaging and colonoscopies showed insignificant total effects on treatment with curative intent. Conclusion Our findings offer insights into follow‐up adherence, detection mode, and treatment with curative intent. The discovery that adherence was highest for CEA, along with the correlation between CEA adherence and treatment with curative intent, aligns with the recent adaptation of guidelines emphasizing CEA measurement over imaging.
BACKGROUND:There is limited knowledge on the supportive care needs (SCNs) of head and neck cancer (HNC) survivors during long-term survivorship. AIMS:To investigate SCNs from 2 to 5 years after treatment among HNC survivors, and its association with demographic, personal, clinical, physical, psychological, social and lifestyle, and cancer-related quality of life factors. METHODS:SCNs were measured at 2, 3, 4 and 5 years using the supportive care needs survey (SCNS-SF34 and SCNS-HNC) in 403 HNC survivors. Linear mixed model analyses were performed to investigate changes in SCNs (continuous outcome) over time and factors associated with SCNs (continuous). Also, the proportion of unmet moderate-high SCNs (dichotomous) was calculated. RESULTS:SCNs on the health system, information and patient support and lifestyle domain decreased from 2 to 5 years, whereas physical and daily living, psychological, sexuality and HNC-function needs were stable. At 5 years, 33% of HNC survivors had unmet SCNs, in particular lack of energy/tiredness (9.2%) and dry mouth/sticky mucus (8.1%). Demographic (male, higher education), personal (personality, coping, self-efficacy), clinical (advanced tumor stage, tumor recurrence), physical (low handgrip strength), psychological (anxiety, depression, fear of cancer recurrence (FCR)), lifestyle (smoking, drinking, being underweight) and cancer-related factors (lower levels of functioning, lower levels of nausea and vomiting, higher levels of fatigue, constipation, financial, speech, social eating, dry mouth and sexuality problems, and painkiller usage) were associated with SCNs. Specifically FCR and painkillers usage were very consistently associated with higher SCNs. CONCLUSIONS:SCNs of HNC survivors decrease over time. A third experiences SCNs at long-term follow-up.