Patient-reported symptom burden under chemotherapy with fluorouracil
Ontology highlight
ABSTRACT:
DISEASE(S): Colorectal Cancer
PROVIDER: 2437688 | ecrin-mdr-crc |
REPOSITORIES: ECRIN MDR
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Project description:This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience.In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received.Among the survey participants, 358 identified themselves as chordoma patients and 202 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (35%) was the most commonly reported symptom followed by depression or severe anxiety (32%) and chronic fatigue (31%). Among patients, the most commonly reported challenges included delayed care (37%), long-term disability (33%), and confusion or unanswered questions about chordoma (28%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common.Our study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms.
| S-EPMC5509836 | biostudies-other
Project description:Influenza challenge trials are important for vaccine efficacy testing. Currently, disease severity is determined by self-reported scores to a list of symptoms which can be highly subjective. A more objective measure would allow for improved data analysis. Twenty one volunteers participated in an influenza challenge trial. We calculated the Daily Sum of Scores (DSS) for a list of 16 influenza symptoms. Whole blood collected at baseline and 24, 48, 72 and 96 hours post challenge was profiled on Illumina HT12v4 microarrays. We selected 19 genes with the largest fold change to train a random forest model with out of bag sampling cross validation. We observed good concordance between predicted and actual scores in an independent test set (overall Pearson correlation, r = 0.57; RMSE = -16.1%).
2017-06-10 | GSE90732 | GEO
Project description:BackgroundChronic graft-versus-host disease (GVHD) is a potentially life-threatening complication of allogeneic hematopoietic stem cell transplantation (HSCT) treatment for hematologic malignancies. There are limited patient-reported data concerning symptom burden and effects on activities of daily living (ADL).MethodsThe cross-sectional Living With Chronic GVHD Patient Survey was administered online in the United States (May-August 2020) to participants aged ≥18 years who underwent allogeneic HSCT, were diagnosed with chronic GVHD by a healthcare provider, and self-reported active chronic GVHD (within past 5 years). Information on patient demographics, disease characteristics, symptom burden, and ability to perform ADL was collected. Symptom burden was assessed using the validated Lee Symptom Scale (range from 0-100 with higher scores indicating greater burden). All data were summarized using descriptive statistics; no formal statistical comparisons were conducted.ResultsOut of 580 participants who entered the survey screener, 165 participants (28.4%) across 33 states fulfilled all study eligibility criteria, completed the entire survey, and were included (age: mean [SD], 53.7 (13.8) years; median [range], 57.0 [18-78] years; female, n = 105 [63.6%]; White, n = 137 [83.0%]). Respondents described their chronic GVHD severity primarily as moderate (n = 54 [32.7%]) or severe (n = 102 [61.8%]) at the time when symptoms were at their worst. One-third of respondents (33.9%) indicated that their chronic GVHD symptoms were at their worst for ≥1 year in duration. Mean (SD; range) Lee Symptom Scale score was 44.8 (19.4; 2-100); 44% of respondents considered "dry eye" the most burdensome symptom. Almost half of respondents (n = 73 [44.2%]) rated their overall quality of life (QoL) as poor. Participants reported a detrimental impact of symptoms on ADL, including basic activities (eg, eating, personal hygiene, dressing).ConclusionsSurvey respondents self-reported high chronic GVHD symptom burden and felt that their symptoms severely interfered with physical function and ADL. Effective strategies to mitigate chronic GVHD symptoms are needed to improve QoL among HSCT survivors.
| S-EPMC9939096 | biostudies-literature
Project description:Objective: To evaluate the effect of short-term type I IFN treatment on the latent viral reservoir in SIV-infected rhesus macaques on ART; Methods: We infected twelve RMs intrarectally with 10,000 TCID of SIVmac239. After 6 weeks of infection, all RMs started a three-class, four-drug ART regimen. Once viral loads were consistently undetectable, six animals were administered 1 dose of pegylated IFN-α2a per week for 4 weeks with each weekly intramuscular application being 6 µg/kg.
2018-05-17 | GSE114561 | GEO
Project description:IntroductionThe symptom burden faced by long-term head and neck cancer survivors is not well understood. In addition, the accuracy of clinical data sources for symptom ascertainment is not clear.ObjectiveTo 1) describe the prevalence of symptoms in 5-year survivors of head and neck cancer, and 2) to evaluate agreement between symptoms obtained via self-report and symptoms obtained from clinical data sources.MethodsWe recruited 5-year survivors of head and neck cancer enrolled at Kaiser Permanente Washington (n = 54). Symptoms were assessed using the MD Anderson Symptom Inventory head and neck cancer module. For each symptom, we assessed the agreement of the patient's survey response ("gold standard") with the 1) medical chart and 2) administrative health care claims data. We computed the sensitivity, specificity, positive predictive value (PPV), and negative predictive value, along with their 95 percent confidence intervals, for each clinical data source.ResultsEighty percent of patients responded. Nearly all participants (95 percent) reported experiencing at least one symptom from the MDASI-HN, and 93 percent reported two or more symptoms. Among patients reporting a given symptom, there was generally no evidence of the symptom from either clinical data source (i.e., sensitivity was generally no greater than 40 percent). The specificity and PPV of the clinical data sources were generally higher than the sensitivity.ConclusionRelying only on medical chart review and/or administrative health data would substantially underestimate symptom burden in long-term head and neck cancer survivors.
| S-EPMC6625536 | biostudies-literature
Project description:As a first step toward developing effective strategies to control symptoms associated with head and neck cancer (HNC) and its treatment, we sought to describe the pattern of symptoms experienced before radiation therapy.Subjects completed the MD Anderson Symptom Inventory-Head and Neck Module before beginning radiation therapy.In all, 270 patients participated. Symptom severity and interference varied between treatment-naïve patients and those with prior treatment. Cluster analyses revealed that 33% of patients had high symptom burden. Symptoms most often rated moderate-to-severe were fatigue, sleep disturbance, distress, pain, and problems chewing and swallowing. Poorer performance status, higher T classification, and receipt of previous treatment correlated with higher symptom burden.A substantial proportion of patients were experiencing high symptom burden. Because few interventions currently exist for several of the most problematic symptoms, research in symptom reduction that targets the pattern of symptoms described here is greatly needed.
| S-EPMC3788079 | biostudies-literature
Project description:Interventions: Group 1: Development of a Patient-Reported Outcome measure in three phases:
Phase I: Systematische Literaturrecherche, Qualitative interviews, conceptual framework, item generation;
Phase II: Item reduction;
Phase III: Validation
Primary outcome(s): Development of a Patient-Reported Outccome Measure
Study Design: Allocation: ; Masking: ; Control: ; Assignment: ; Study design purpose: other
| 2437895 | ecrin-mdr-crc
Project description:The purpose of this study is to evaluate feasibility and acceptability of completing PROs among AYAs randomized to Choice PRO vs Fixed PRO.
| 2394564 | ecrin-mdr-crc
Project description:BackgroundInformation to the patient about the long-term prognosis of symptom burden and functioning is an integrated part of clinical practice, but relies mostly on the clinician's personal experience. Relevant prognostic models based on patient-reported outcome (PRO) data with repeated measurements are rarely available.ObjectiveThe aim was to describe a generic method for individual long-term prognosis of symptom burden and functioning that implied few statistical presumptions, to evaluate an implementation for prognosis of depressive symptoms in stroke patients and to provide open access to a Web-based prototype of this implementation for individual use.MethodsThe method used to describe individual prognosis of a PRO outcome was based on the selection of a specific subcohort of patients who have the same score as the patient in question at the same time (eg, after diagnosis or treatment start), plus or minus one unit of minimal clinically important difference. This subcohort's experienced courses were then used to provide quantitative measures of prognosis over time. A cohort of 1404 stroke patients provided data for a simulation study and a prototype for individual use. Members of the cohort answered questionnaires every 6 months for 3.5 years. Depressive symptoms were assessed by the Hospital Anxiety and Depression Scale (HADS) and a single item from the SF-12 (MH4) health survey. Four approaches were compared in a simulation study in which the prognosis for each member of the cohort was individually assessed.ResultsThe mean standard deviations were 40% to 70% higher in simulated scores. Mean errors were close to zero, and mean absolute errors were between 0.46 and 0.66 SD in the four approaches. An approach in which missing HADS scores were estimated from the single-item SF-12 MH4 performed marginally better than methods restricted to questionnaires with a genuine HADS score, which indicates that data collected with shorter questionnaires (eg, in clinical practice) may be used together with longer versions with the full scale, given that the design includes at least two simultaneous measurements of the full scale and the surrogate measure.ConclusionsThis is the first description and implementation of a nonparametric method for individual PRO-based prognosis. Given that relevant PRO data have been collected longitudinally, the method may be applied to other patient groups and to any outcome related to symptom burden and functioning. This initial implementation has been deliberately made simple, and further elaborations as well as the usability and clinical validity of the method will be scrutinized in clinical practice. An implementation of the prototype is available online at www.prognosis.dk.
| S-EPMC5558046 | biostudies-literature
Project description:Background Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms. Methods This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire. Results Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire. Conclusions PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. Graphical abstract A higher resolution version of the Graphical abstract is available as Supplementary information Supplementary Information The online version contains supplementary material available at 10.1007/s00467-021-05269-4.
| S-EPMC8579900 | biostudies-literature