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Prospective Survey of Financial Toxicity Measured by the Comprehensive Score for Financial Toxicity in Japanese Patients With Cancer.

PurposeWe previously reported on the pilot study assessing the feasibility of using the Japanese translation of the Comprehensive Score for Financial Toxicity (COST) tool to measure financial toxicity (FT) among Japanese patients with cancer. In this study, we report the results of the prospective survey assessing FT in Japanese patients with cancer using the same tool.Patients and methodsEligible patients were receiving chemotherapy for a solid tumor for at least 2 months. In addition to the COST survey, socioeconomic characteristics were collected by using a questionnaire and medical records

AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions.

BackgroundAdolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs.MethodsTwo cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online informa

A study protocol for a double-blinded, randomised, placebo-controlled trial on the use of encapsulated FMT for reducing the side effects of HSCT: the HSCT-BIOME study.

BackgroundThe composition of the gut microbiota both prior to and after haematopoietic stem cell transplantation (HSCT) is increasingly implicated in the outcomes of HSCT, including infections, poor immune reconstitution and disease relapse. Faecal microbiota transplantation (FMT) offers a potential strategy of supporting the gut microbiota and improve HSCT outcomes. Although FMT has been investigated in HSCT recipients, it has largely been evaluated therapeutically for indications such as infection, or once immunocompetency is regained.MethodsPeri-HSCT FMT (i.e. before and after HSCT) will be

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

BackgroundOur aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18-39 years at time of diagnosis) and older adult cancer patients (40+ years).MethodsCross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs.Results299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during

INvestigational Vertebroplasty Efficacy and Safety Trial (INVEST): a randomized controlled trial of percutaneous vertebroplasty.

BACKGROUND: The treatment of painful osteoporotic vertebral compression fractures has historically been limited to several weeks of bed rest, anti-inflammatory and analgesic medications, calcitonin injections, or external bracing. Percutaneous vertebroplasty (the injection of bone cement into the fractured vertebral body) is a relatively new procedure used to treat these fractures. There is increasing interest to examine the efficacy and safety of percutaneous vertebroplasty and to study the possibility of a placebo effect or whether the pain relief is from local anesthetics placed directly on

Experiences and Perspectives of Patients with Non-HIV-Associated Lipodystrophies and Their Caregivers: A Qualitative Study.

BackgroundLipodystrophy comprises a group of conditions characterized by loss of functional adipose tissue, resulting in severe metabolic complications and a complex range of symptoms.ObjectiveThis study sought to gain a holistic understanding of the impact of congenital or non-human immunodeficiency virus acquired lipodystrophies on the quality of life of patients and their caregivers and to capture the impact of lipodystrophy on quality of life using a standard instrument.MethodsTen patients with lipodystrophies and five caregivers from the USA and UK were recruited through convenience sampl

mHealth-Supported Exercise Rehabilitation to Reverse Frailty After Autologous Transplantation in Multiple Myeloma: Randomized Controlled Trial.

BACKGROUND: Frailty is highly prevalent in survivors of multiple myeloma (MM) after autologous hematopoietic cell transplantation and is associated with poor functional recovery and adverse clinical outcomes. Although exercise is known to improve physical function, traditional center-based rehabilitation models are often inaccessible to this population during early posttransplant recovery. Mobile health (mHealth)-supported exercise may offer a scalable alternative; however, evidence in hematologic malignancies remains limited. OBJECTIVE: This study aimed to evaluate the effects of a 16-week m

Spinal cord Compression Outcomes Of Treatment (SCOOT) Delphi study.

BackgroundEarlier diagnosis, advances in medical oncology and radiation modalities continue to improve cancer patients' survival length, leading to a rise in metastatic disease and metastatic spinal cord compression (MSCC). Treatment approaches need a high level of individualisation, making management decisions for these patients challenging.MethodsA modified Delphi study with quantitative and qualitative analysis to identify thresholds for surgical intervention for MSCC patients and the factors underpinning those thresholds. A predefined expert panel was sent rounds of decision-making questio

Effect of a Mobile App for the Pharmacotherapeutic Follow-Up of Patients With Cancer on Their Health Outcomes: Quasi-Experimental Study.

BackgroundOral antineoplastic agents (OAAs) have revolutionized cancer management. However, they have been reported with adverse side effects and drug-drug interactions. Moreover, patient adherence to OAA treatment is critical. Mobile apps can enable remote and real-time pharmacotherapeutic monitoring of patients, while also promoting patient autonomy in their health care.ObjectiveThe primary objective was to analyze the effect of using a mobile app for the follow-up of patients with oncohematological malignancies undergoing treatment with OAAs on their health outcomes. The secondary objective

Patient-Reported Factors in Treatment Satisfaction in Patients with Relapsed/Refractory Multiple Myeloma (RRMM).

BackgroundTherapy choices in relapsed/refractory multiple myeloma (RRMM) should consider patient satisfaction with treatment, because it is associated with adherence to therapy, health outcomes, and medical safety. The primary objective of this pilot cross-sectional observational study was to ascertain factors associated with patient-reported treatment satisfaction in RRMM.Patients and methodsPatients with a self-reported diagnosis of RRMM recruited from PatientsLikeMe, MyelomaCrowd, and Facebook were administered an electronic survey that included questions on demographics and clinical histor

Primary care referrals of patients with potentially serious diseases to the emergency department or a quick diagnosis unit: a cross-sectional retrospective study.

BackgroundIn Spain, primary healthcare (PHC) referrals for diagnostic procedures are subject to long waiting-times, and physicians and patients often use the emergency department (ED) as a shortcut. We aimed to determine whether patients evaluated at a hospital outpatient quick diagnosis unit (QDU) who were referred to ED from 12 PHC centers could have been directly referred to QDU, thus avoiding ED visits. As a secondary objective, we determined the proportion of QDU patients who might have been evaluated in a less rapid, non-QDU setting.MethodsWe carried out a cross-sectional retrospective c

The impact of multiple sclerosis on wellbeing, productivity, and societal relations.

Multiple sclerosis (MS) is the main cause of nontraumatic neurological disabilities in the population under 50 years of age.To evaluate the most prevalent symptoms in a national sample of people with MS and to analyze their correlation with disease characteristics, demographics, quality of life, employment status, and use of social benefits.Cross-sectional, online, self-reported survey, concerning demographic and clinical data, employment status, and use of social benefits.A total of 466 patients answered the survey. The median age at onset was 30 years, the current age, of 39, and disease dur

Developing a patient portal for haematology patients requires involvement of all stakeholders and a customised design, tailored to the individual needs.

BackgroundElectronic patient portals are increasingly being implemented, also in (haemato) oncology. However, portal usage is low and depends on user and provider engagement. We explored wishes, expectations and thoughts of patients with a haematologic malignancy and their physicians with regard to the electronic patient portal.MethodsBased on insights from literature and a focus group discussion we built a 44-item questionnaire. This questionnaire was spread amongst patients with a haematologic malignancy at the outpatient clinic that was not yet exposed to patient portal facilities. Haematol

The GIMEMA-ALLIANCE Digital Health Platform for Patients With Hematologic Malignancies in the COVID-19 Pandemic and Postpandemic Era: Protocol for a Multicenter, Prospective, Observational Study.

BACKGROUND: The COVID-19 pandemic has raised unprecedented challenges in the management of patients with cancer and has increased the demands for digital health tools that, for example, could facilitate remote monitoring of patients. Based on this, the Gruppo Italiano Malattie Ematologiche dell'Adulto (GIMEMA) has recently developed a digital health tool dedicated to patients with hematologic malignancies: the GIMEMA-ALLIANCE platform. OBJECTIVE: The main objectives of this web-based platform are to generate relevant data to better understand quality of life, symptoms, and medication adherenc

Telehealth exercise to Improve Physical function and frailty in patients with multiple myeloma treated with autologous hematopoietic Stem cell transplantation (TIPS): protocol of a randomized controlled trial.

BACKGROUND: Advances in autologous hematopoietic stem cell transplantation (HSCT) and supportive care have led to marked improvements in survival for patients with multiple myeloma. Despite these improvements, patients with multiple myeloma remain at high risk of physical dysfunction and frailty due to HSCT and its associated exposures. Although traditional supervised exercise programs can improve frailty in cancer patients and survivors, rehabilitation facilities are typically far from a patient's residence, are offered on fixed days/hours, contain uniform activities for everyone, and carry a

Cohort Profile: The Haematological Malignancy Research Network (HMRN): a UK population-based patient cohort.

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Effect of electronic patient record use on mortality in End Stage Renal Disease, a model chronic disease: retrospective analysis of 9 years of prospectively collected data.

BackgroundIn chronic disease, health information technology promises but has yet to demonstrate improved outcomes and decreased costs. The main aim of the study was to determine the effects on mortality and cost of an electronic patient record used in daily patient care in a model chronic disease, End Stage Renal Disease, treated by chronic maintenance hemodialysis. Dialysis treatment is highly regulated, and near uniform in treatment modalities and drugs used.MethodsThe particular electronic patient record, patient-centered and extensively coded, was used first in patient care in 3 dialysis u

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… The security ensures confidentiality for clinical and financial information and for integrated electronic mail. Laboratory test results, radiology reports, pathology reports, and dialysis machine data download automatically into the database via MIQS-designed electronic interfaces. …

Longitudinal validity and reliability of the Myeloma Patient Outcome Scale (MyPOS) was established using traditional, generalizability and Rasch psychometric methods.

PURPOSE: The Myeloma Patient Outcome Scale (MyPOS) was developed to measure quality of life in routine clinical care. The aim of this study was to determine its longitudinal validity, reliability, responsiveness to change and its acceptability. METHODS: This 14-centre study recruited patients with multiple myeloma. At baseline and then every two months for 5 assessments, patients completed the MyPOS. Psychometric properties evaluated were as follows: (a) confirmatory factor analysis and scaling assumptions (b) reliability: Generalizability theory and Rasch analysis, (c) responsiveness and min

A Randomized Placebo-Controlled Study of a Transcranial Photobiomodulation Helmet in Parkinson's Disease: Post-Hoc Analysis of Motor Outcomes.

Emerging evidence is increasingly supporting the use of transcranial photobiomodulation (tPBM) to improve symptoms of neurodegenerative diseases, including Parkinson's disease (PD). The objective of this study was to analyse the safety and efficacy of tPBM for PD motor symptoms. The study was a triple blind, randomized placebo-controlled trial with 40 idiopathic PD patients receiving either active tPBM (635 nm plus 810 nm LEDs) or sham tPBM for 24 min per day (56.88J), six days per week, for 12 weeks. The primary outcome measures were treatment safety and a 37-item MDS-UPDRS-III (motor domain)

Clinician-Reported Respiratory Viral Testing and Intended Management of Community-Acquired Respiratory Viral Infections in Haematology and Haematopoietic Cell Transplantation: An International Exploratory Survey.

Background: Community-acquired respiratory viruses (CARVs) cause significant morbidity and mortality in patients with haematological malignancies and those undergoing haematopoietic cell transplantation (HCT). Despite this, clinical management remains variable. This study evaluated clinicians' awareness, diagnostic practices, and treatment approaches to major respiratory viruses in this high-risk population. Methods: An international electronic survey using non-probability convenience sampling was conducted among haematology, oncology, intensive care and emergency medicine physicians. Four rea