Search results for "rare cancer"

showing 10 items of 35 documents

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group

2021

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm hei…

medicine.medical_specialtychest sarcomaBreast SarcomaPopulationbreast sarcomaSocial issuesArticleRC0254Tumours of the digestive tract Radboud Institute for Health Sciences [Radboudumc 14]All institutes and research themes of the Radboud University Medical CenterSDG 3 - Good Health and Well-beingQuality of lifemedicinethoracic sarcomaSocial determinants of healtheducationeducation.field_of_studybusiness.industryRGeneral Medicinemedicine.diseaseMental healthhealth-related quality of lifeMoodpatient-reported outcomesPhysical therapyMedicineSarcomabusinessRare cancers Radboud Institute for Health Sciences [Radboudumc 9]Journal of Clinical Medicine
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Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer

2017

Contains fulltext : 174665.pdf (Publisher’s version ) (Open Access) PURPOSE: For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. METHODS: MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures…

AdultGerontologymedicine.medical_specialtyAdolescentReviewYoung Adult03 medical and health sciences0302 clinical medicineQuality of life (healthcare)Age groupsNeoplasmsmedicinecancerHumansPatient reported outcome measures (PROMs)Patient Reported Outcome Measures030212 general & internal medicineYoung adultPsychiatryCancerQuality of Life ResearchHealth related quality of lifebusiness.industryPublic healthPublic Health Environmental and Occupational HealthCancermedicine.diseaseHealth-related quality of life (HRQoL)humanitiesadolescents and young adults (AYAs)030220 oncology & carcinogenesisQuality of LifeAdolescents and young adults (AYAs)health-related quality of life (HRQoL)businessPsychosocialpatient reported outcome measures (PROMs)Rare cancers Radboud Institute for Health Sciences [Radboudumc 9]
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Seasonal Human Coronavirus Respiratory Tract Infection in Recipients of Allogeneic Hematopoietic Stem Cell Transplantation

2021

Abstract Background Little is known about characteristics of seasonal human coronaviruses (HCoVs) (NL63, 229E, OC43, and HKU1) after allogeneic stem cell transplantation (allo-HSCT). Methods This was a collaborative Spanish and European bone marrow transplantation retrospective multicenter study, which included allo-HSCT recipients (adults and children) with upper respiratory tract disease (URTD) and/or lower respiratory tract disease (LRTD) caused by seasonal HCoV diagnosed through multiplex polymerase chain reaction assays from January 2012 to January 2019. Results We included 402 allo-HSCT recipients who developed 449 HCoV URTD/LRTD episodes. Median age of recipients was 46 years (range,…

PNEUMONIAMalevirusesmedicine.medical_treatmentseasonal human coronavirusHematopoietic stem cell transplantationmedicine.disease_causeDISEASElaw.inventionCoronavirus OC43 HumanCLINICAL CHARACTERISTICSlawCoronavirus 229E HumanRisk FactorsImmunology and AllergyChildRespiratory Tract InfectionsNL63 INFECTIONSCoronavirusOUTCOMESRespiratory tract infectionsSYNCYTIAL VIRUSHazard ratioHematopoietic Stem Cell Transplantationvirus diseasesupper and lower respiratory tract diseaseHCoV-NL63HCoV-229Erespiratory systemMiddle AgedIntensive care unitHospitalizationimmunocompromisedsurgical procedures operativeInfectious Diseasesmedicine.anatomical_structureAcademicSubjects/MED00290Child PreschoolCohortFemaleSeasonsCoronavirus InfectionsRare cancers Radboud Institute for Health Sciences [Radboudumc 9]allogeneic hematopoietic stem cell transplantation; community-acquired respiratory virus; HCoV-229E; HCoV-HKU1; HCoV-NL63; HCoV-OC43; immunocompromised; immunodeficiency score index; multiplex PCR assay; seasonal human coronavirus; upper and lower respiratory tract diseaseAdultmedicine.medical_specialtyHCoV-OC43AdolescentDIAGNOSISCHINAHCoV-HKU1BetacoronavirusAll institutes and research themes of the Radboud University Medical Centerstomatognathic systemInternal medicinemedicineMajor ArticleRHINOVIRUSHumansallogeneic hematopoietic stem cell transplantationAgedRetrospective Studiescommunity-acquired respiratory virusbusiness.industryInfantmultiplex PCR assayTransplantationCoronavirus NL63 HumanPARAINFLUENZA VIRUSbusinessimmunodeficiency score indexRespiratory tract
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Rare Cancers Europe (RCE) methodological recommendations for clinical studies in rare cancers: A European consensus position paper

2015

While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in …

Research designPathologyData baseResearch methodologyElectronic medical recordDiseaseReviewProceduresTreatment responseClinical trials; Rare cancers; Research methodology; Clinical Studies as Topic; Humans; Neoplasms; Rare Diseases; Research Design; Hematology; OncologyClinical trialsNeoplasmsReimbursementPriority journaleducation.field_of_studyClinical Studies as TopicClinical studies as topicHematologyRare diseasesEuropeOncologyResearch designResearch DesignClinical decision makingHumanmedicine.medical_specialtyPractice guidelineCase findingPopulationHealth care qualityReviewsCancer researchClinical studyRare DiseasesSDG 3 - Good Health and Well-beingConceptual frameworkmedicineHumansRare cancersTumor markerIntensive care medicineeducationAntineoplastic activityFlexibility (engineering)Surrogate endpointbusiness.industryMethodologyRare cancerStudy designCancer survivalReimbursementClinical trialClinical trials; Rare cancers; Research methodology; Hematology; OncologyPatient informationClinical effectivenessPosition paperNeoplasmbusinessRare disease
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Does age matter?: A comparison of health‐related quality of life issues of adolescents and young adults with cancer

2018

Objective:Health‐related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14–25 years were compared with those of older adults (26–60 years) with cancer.Methods:AYAs and older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self‐appraisals; outlook on life; lifestyle; treatment‐related and life beyond treatment.Results:HRQoL issues were reviewed by 33 AYAs and 25 older adults. Sev…

GerontologyAdultMalePalliative careActivities of daily livingAdolescentmedia_common.quotation_subjectHealth StatusEmotionsPsycho-oncologyFertility03 medical and health sciencesYoung Adult0302 clinical medicineQuality of life (healthcare)Rating scaleNeoplasmsActivities of Daily LivingBody ImageMedicineHumans030212 general & internal medicineYoung adultLife Stylemedia_commonbusiness.industryAge FactorsMiddle AgedSocial ParticipationSelf ConcepthumanitiesOncologyAttitude030220 oncology & carcinogenesisQuality of LifeFemalebusinessPsychosocialRare cancers Radboud Institute for Health Sciences [Radboudumc 9]
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Epidemiology of rare cancers and inequalities in oncologic outcomes

2019

Rare cancers epidemiology is better known compared to the other rare diseases. Thanks to the long history of the European population-based cancer registries and to the EUROCARE huge database, the burden of rare cancers has been estimated the European (EU28) population. A considerable fraction of all cancers is represented by rare cancers (24%). They are a heterogeneous group of diseases, but they share similar problems: uncertainty of diagnosis, lack of therapies, poor research opportunities, difficulties in clinical trials, lack of expertise and of centres of reference. This paper analyses the major epidemiological indicators of frequency (incidence and prevalence) and outcome (5-year surv…

0301 basic medicineMaleSettore MED/06 - Oncologia Medica0302 clinical medicineNeoplasmsEpidemiologyPrevalenceEurope ; Population-based cancer registry ; Rare cancersChildeducation.field_of_studyRelative survivalIncidence (epidemiology)IncidenceGeneral MedicineMiddle AgedSurvival RateEuropeHealthcare DisparitieOncology030220 oncology & carcinogenesisChild PreschoolFemaleHumanAdultmedicine.medical_specialtyAdolescentEurope; Population-based cancer registry; Rare cancers; Surgery; OncologyPopulationSocio-culturaleEurope Population-based cancer registry Rare cancers03 medical and health sciencesYoung AdultRare DiseasesAge DistributionRare DiseasemedicineHumansRare cancersHealthcare DisparitiesSex DistributioneducationPopulation-based cancer registrySurvival rateAgedbusiness.industryPublic healthInfant NewbornCancerRare cancerInfantmedicine.diseaseClinical trial030104 developmental biologyNeoplasmSurgerybusinessDemography
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Soft tissue sarcoma in Italy: From epidemiological data to clinical networking to improve patient care and outcomes

2019

Sarcomas are rare malignant neoplasms that develop from mesenchymal cells and include a heterogeneous and large group of histological subtypes that may occur at any anatomical site. Soft tissue sarcomas (STS), the focus of this review, account for ≈70‒80% of sarcomas and represent <1% of all cancers. The heterogeneity of STS applies to both their topography and morphology, and 5-year survival can vary widely depending on disease stage and the complex interplay between anatomical site and histology for different STS subtypes. The rarity and heterogeneity of STS, together with other factors, such as the lack of clinical expertise often lead to difficulties and delays in making an accurate …

Registriemedicine.medical_specialtyCancer ResearchHistologyEpidemiologyCancer registrieSoft Tissue NeoplasmsDiseaseEuropean reference networkPatient careClinical expertise03 medical and health sciences0302 clinical medicineEpidemiologymedicinePrevalenceHumansCancer registriesRegistries030212 general & internal medicineStage (cooking)Intensive care medicineSoft tissue sarcomaReference centresbusiness.industrySoft tissue sarcomaCancer registries; Epidemiology; European reference network; Histology; Incidence; Italian rare cancer network; Prevalence; Reference centres; Regional variability; Soft tissue sarcoma; Epidemiology; Oncology; Cancer ResearchIncidenceReference centreCancerSarcomaRegional variabilitymedicine.diseaseItalyOncology030220 oncology & carcinogenesisItalian rare cancer networkPatient CarebusinessLarge groupHuman
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Treatment challenges in and outside a network setting: Head and neck cancers.

2019

Head and neck cancer (HNC) is a rare disease that can affect different sites and is characterized by variable incidence and 5-year survival rates across Europe. Multiple factors need to be considered when choosing the most appropriate treatment for HNC patients, such as age, comorbidities, social issues, and especially whether to prefer surgery or radiation-based protocols. Given the complexity of this scenario, the creation of a highly specialized multidisciplinary team is recommended to guarantee the best oncological outcome and prevent or adequately treat any adverse effect. Data from literature suggest that the multidisciplinary team-based approach is beneficial for HNC patients and lea…

0301 basic medicinemedicine.medical_specialtySocio-culturaleSocial issuesMultidisciplinary team03 medical and health sciencesTherapeutic approach0302 clinical medicineRare DiseasesMultidisciplinary approachmedicineHumansAdverse effectIntensive care medicineHead and neck cancerReferral and ConsultationPatient Care TeamEuropean reference networks joint action of rare cancers ; Head and neck cancer ; Multidisciplinary team ; Rare diseasebusiness.industryHead and Neck NeoplasmHead and neck cancerEuropean reference networks joint action of rare cancersGeneral MedicineMultidisciplinary teammedicine.diseaseEurope030104 developmental biologyClinical researchOncologyHead and Neck Neoplasms030220 oncology & carcinogenesisEuropean reference networks joint action of rare cancerSurgerybusinessEuropean reference networks joint action of rare cancers; Head and neck cancer; Multidisciplinary team; Rare disease; Surgery; OncologyRare diseaseDelivery of Health CareRare diseaseHumanEuropean journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology
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Endocrine tumours: epidemiology of malignant digestive neuroendocrine tumours.

2013

Little is known about patients with malignant digestive neuroendocrine tumours (MD-NETs). Although their incidence is increasing, MD-NETs remain a rare cancer, representing 1% of digestive cancers. Most MD-NETs are well-differentiated. MD-NET poorly differentiated carcinomas account for 20% of cases on average. Anatomical localisation of MD-NETs varied according to geographic region. Stage at diagnosis and prognosis for patients with MD-NETs in the general population are considerably worse than often reported from small hospital case series. Prognosis varies with tumour differentiation, anatomic site and histological subtype. There are significant differences in survival from MD-NETs among …

Oncologymedicine.medical_specialtyeducation.field_of_studybusiness.industryEndocrinology Diabetes and MetabolismPoorly differentiatedIncidence (epidemiology)PopulationGeneral MedicineRare cancerSmall hospitalNeuroendocrine TumorsEndocrinologyEndocrinologyInternal medicineEpidemiologyEndocrine Gland NeoplasmsmedicineEndocrine systemAnimalsHumansbusinesseducationDigestive cancerGastrointestinal NeoplasmsEuropean journal of endocrinology
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Safety and Activity of the First-in-Class Sym004 Anti-EGFR Antibody Mixture in Patients with Refractory Colorectal Cancer

2015

Abstract Tumor growth in the context of EGFR inhibitor resistance may remain EGFR-dependent and is mediated by mechanisms including compensatory ligand upregulation and de novo gene alterations. Sym004 is a two-antibody mixture targeting nonoverlapping EGFR epitopes. In preclinical models, Sym004 causes significant EGFR internalization and degradation, which translates into superior growth inhibition in the presence of ligands. In this phase I trial, we observed grade 3 skin toxicity and hypomagnesemia as mechanism-based dose-limiting events during dose escalation. In dose-expansion cohorts of 9 and 12 mg/kg of Sym004 weekly, patients with metastatic colorectal cancer and acquired EGFR inhi…

AdultMaleProto-Oncogene Proteins B-rafClass I Phosphatidylinositol 3-KinasesColorectal cancerCancer development and immune defence Radboud Institute for Molecular Life Sciences [Radboudumc 2]Antineoplastic AgentsContext (language use)Rare cancers Radboud Institute for Molecular Life Sciences [Radboudumc 9]LigandsPhosphatidylinositol 3-Kinaseschemistry.chemical_compoundCell Line TumorHumansMedicinePanitumumabNeoplasm MetastasisAgedEGFR inhibitorsAged 80 and overDose-Response Relationship DrugCetuximabbusiness.industryGene AmplificationAntibodies MonoclonalCancerMiddle Agedmedicine.diseaseErbB ReceptorsClinical trialGenes rasTreatment OutcomeOncologychemistryMutationImmunologyCancer researchFemaleGrowth inhibitionColorectal Neoplasmsbusinessmedicine.drug
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