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Быстрый обзор мер по улучшению ухода за людьми, страдающими множественным склерозом, диабетической ретинопатией и раком легких.

В Соединенных Штатах пациенты, страдающие хроническими заболеваниями, сталкиваются с различиями в показателях здоровья по всему спектру услуг по уходу. Среди пациентов с множественным склерозом, диабетической ретинопатией и раком легких не хватает доказательств, резюмирующих меры по улучшению ухода и сокращению этих различий. Цель этого оперативного обзора литературы заключалась в том, чтобы определить меры, принимаемые пациентами с такими хроническими заболеваниями в целях улучшения состояния здоровья и сокращения неравенства в плане выявления, диагностики, доступа к лечению и специалистам, с

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… Improving Health Literacy Health literacy is an SDOH that may contribute to outcome disparities. High health literacy can help people understand health information to make well-informed decisions. … People with low health literacy may have difficulty decoding screening guidelines to ascertain their personal risk for disease and potential benefit from screening. We identified studies that could be considered to impact health literacy by increasing knowledge of screening. …

Социальные детерминанты здоровья, качества ухода за больными и результаты лечения неврологических расстройств: систематический обзор.

СПРАВОЧНАЯ ИНФОРМАЦИЯ: Социальные детерминанты здоровья (SDOH) оказывают значительное влияние на оказание медицинской помощи и ее результаты, однако их конкретное воздействие на качество неврологической медицинской помощи по-прежнему недостаточно синтезировано. ЦЕЛЬ: Цель этого систематического обзора заключалась в обобщении данных о связях между СДОГ и качеством медицинского обслуживания и результатах лечения пациентов в связи с серьезными неврологическими расстройствами. МЕТОДЫ: ПОСЛЕ ПРИСМА 2020 Руководящие принципы, мы систематически искали Пуббмеда, Интернет науки и Эмбазу для исследовани

Validation of a scale to assess adherence to oral chemotherapy based on the experiences of patients and healthcare professionals (EXPAD-ANEO).

Background: Lack of adherence to Oral antineoplastic agents (OAAs) treatment has important clinical, social and economic consequences. Objective: To develop and validate a novel instrument for assessing adherence to OAAs, based on the reported experiences of people with cancer in relation to their treatment and the opinions of the healthcare professionals who care for them. Methods: We performed a multicenter validation study of a scale designed to assess adherence to OAAs. First, a steering committee developed the items for an initial scale, based on the results of a qualitative study that ev

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… literacy. … We measured health literacy on a small scale of six questions selected by the steering committee from the 16-Item European Health Literacy Survey (HLS-EU-Q16) ( Nolasco et al., 2020 ), to measure the association with adherence. …

Characteristics and patient-reported outcomes associated with dropout in severely affected oncological patients: an exploratory study.

BackgroundPatient-reported outcome measures (PROMs) are commonly-used surrogates for clinical outcomes in cancer research. When researching severe diseases such as cancer, it is difficult to avoid the problem of incomplete questionnaires from drop-outs or missing data from patients who pass away during the observation period. The aim of this exploratory study was to explore patient characteristics and the patient-reported outcomes associated with the time-to-dropout.MethodsIn an Oncological Social Care Project (OSCAR) study, the condition of the participants was assessed four times within 12 m

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… The European Health Literacy Survey (HLS-EU-Q6) [ 20 ] is a shortened, six-item version of the European Health Literacy Survey (HLS-EU) for assessing health literacy (HL). … Health literacy in Italy: a cross-sectional study protocol to assess the health literacy level in a population-based sample, and to validate health literacy measures in the Italian language. BMJ Open. 2017;7(11):e017812. doi: 10.1136/bmjopen-2017-017812. 21. …

2021 International Cancer Education Conference Program and Abstracts.

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… Skills related to health literacy, communication, forming community partnerships, and psychosocial education strategies with a specific focus on community outreach to special populations. … literacy. …

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BackgroundCarers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers.ObjectiveTo facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadi

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… The consenting participants completed a demographic questionnaire and a 4-item self-report measure of health literacy [ 48 ]. Participants were provided access to the relevant eTRIO module and asked to speak aloud their thoughts and impressions as they were completing the module (think-aloud). … For example, we were unable to recruit a carer with low health literacy, and there was an overrepresentation of women. Further usability and acceptability testing is currently underway in a larger study with a more diverse sample of patients and carers. …

Truthfulness in patient-reported outcomes: factors affecting patients' responses and impact on data quality.

The use of patient-reported outcome (PRO) measures in research and clinical care has expanded dramatically, reflective of an increasing recognition of patient-centeredness as an important aspect of high-quality health care. Given this rapid expansion, ensuring that data collected using PRO measures is of high quality is crucial for their continued successful application. Because of the subjective nature of the outcomes assessed, there are many factors that may influence patients' responses and thus challenge the overall quality of the data. In this review, we discuss the multiple factors that

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… by respondents. 66 Given the potential impact of low health literacy on PRO results, efforts should be made to evaluate readability during validation. … The impact of limited health literacy on patient-reported outcomes (PROs) in systemic lupus erythematosus. Arthritis Rheumatol . 2017;69(suppl10). …

Design and implementation of mHealth applications for older people with cancer: A scoping review.

ObjectiveThis scoping review aimed to systematically synthesize the evidence on the functions, design, implementation strategies, and evaluation approaches of mobile health (mHealth) applications (apps) developed for older adults with cancer, to inform future research and practice.MethodsA scoping review was conducted using Arksey and O'Malley's methodological framework, with an updated systematic search of five databases (Medline, Web of Science, CINAHL, Embase, and the Cochrane Library) from January 1, 2008, to February 28, 2025. The review adhered to the PRISMA-ScR guidelines for scoping re

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… The roles of social support and health literacy in self-management among patients with chronic kidney disease. J Nurs Scholarsh. May 2018;50(3):265–275. doi: 10.1111/jnu.12377. 58. Eichhorn C., Plecher D.A., Lurz M., et al. Springer International Publishing; 2020. …

Palliative care follow-up for cancer patients combining day-hospital visits and telemedicine: What feasibility?

BackgroundDue to the increasing life expectancy of patients with cancer, palliative care services are increasingly solicited to provide follow-up for individuals living at home. The implementation of teleconsultations represents a potential solution to extend access to palliative care follow-up to a larger number of patients. The aim of this study is to demonstrate the a priori acceptance of teleconsultations among all patients admitted to palliative care, as well as the feasibility of their implementation. We therefore initially explored whether a specific patient profile might limit acceptan

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… They are embedded in “sick role careers,” possess substantial medical and cultural capital, including high health literacy, and actively position themselves as “sentinels” of their own health. … Health literacy: towards system level solutions . BMJ . 2015 ; 350 :h1026. doi: 10.1136/bmj.h1026 25712067 27 Nutbeam D . The evolving concept of health literacy . Social Science & Medicine [Internet]. déc 2008 [cité 25 oct 2024 ]; 67 ( 12 ): 2072 ‑8. …

Просветительская работа с пациентами с помощью массового открытого онлайнового курса (МООК) для пациентов с множественными миеломами и лиц, обеспечивающих уход: описывающее исследование знаний, проведенное Французской ассоциацией пациентов с множественными миеломами (АФ3М) и французскоязычной межгруппой " Миэлома " (МФМ).

Множественная миелома (ММ) представляет собой хроническую гематологическую халатность, характеризующуюся сложными терапевтическими стратегиями, неоднократными рецидивами и существенными информационными и психосоциальными потребностями. Достижения в области пероральной терапии и амбулаторного лечения переложили бóльшую ответственность на пациентов и лиц, обеспечивающих уход, подчеркнув необходимость наличия доступных и высококачественных образовательных ресурсов. Терапевтическое просвещение пациентов (ТПЭ) направлено на то, чтобы помочь пациентам лучше понять свое состояние и более эффективно с

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… Originally developed by North American academic institutions, MOOCs are now recognized for their potential in medical education, especially among patients with chronic conditions, by improving health literacy, self-management, and engagement in their care. … Similar knowledge gains were observed in oncology-focused MOOCs, such as the program described for women with breast cancer, where a participatory design approach improved digital health literacy and engagement [ 10 ]. …

Perceived information provision and satisfaction among lymphoma and multiple myeloma survivors--results from a Dutch population-based study.

To improve posttreatment care for (long-term) lymphoma survivors in the Netherlands, survivorship clinics are being developed. As information provision is an important aspect of survivorship care, our aim was to evaluate the current perceived level of and satisfaction with information received by non-Hodgkin's lymphoma (NHL), Hodgkin's lymphoma (HL) and multiple myeloma (MM) survivors, and to identify associations with sociodemographic and clinical characteristics. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with NHL, HL and MM from 1999 to 2009. In

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… Davis TC Dolan NC Ferreira MR The role of inadequate health literacy skills in colorectal cancer screening Cancer Invest 2001 19 193 200 10.1081/CNV-100000154 11296623 21. … Davis TC Williams MV Marin E Health literacy and cancer communication CA Cancer J Clin 2002 52 134 149 10.3322/canjclin.52.3.134 12018928 22. …

SiMON-PRO-Hematology®: Digital techology for pharmacotherapeutic and patient reported outcomes monitoring in patients with hematologic malignancies.

INTRODUCTION: Advances in hematologic malignancy treatment have improved survival, but patients often experience treatment-related toxicities. Traditional clinical follow-up often overlooks the patient's subjective experience, highlighting the need for integrated patient-reported outcome measures (PROMs). The primary objective of this study was to describe the design and implementation of the SiMON-PRO-Hematology® system, a comprehensive information tool supporting the pharmacotherapeutic follow-up of patients with hematological malignancies. A secondary objective was to detail the process for

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… literacy, and cognitive capacity to understand and complete the questionnaires. … Therefore, patients with limited technological skills, low health literacy, or significant cognitive impairment may have been underrepresented. This may have introduced selection bias and could limit the generalizability of the findings to these populations. …

Quality indicators and patient outcome measures for palliative care in cancer patients: a systematic review.

IntroductionWith the exponential rise in global cancer incidence, the surge in demand for palliative care has outstripped capacity, limiting patients' access to quality and holistic palliative care, especially in low- and middle-income countries. Despite an upturn in research activity, evidence in palliative care remains limited, given its complexity as well as the shortage of standardised quality indicators (QIs) and patient outcome measures (POMs). The objective of this systematic review is to assess the QIs and POMs used to evaluate palliative care service on aggregated and individual level

Effects of Interventions to Improve Access to Financial Services for Micro, Small, and Medium-Sized Enterprises in Low- and Middle-Income Countries: An Evidence and Gap Map.

Micro, small, and medium-sized enterprises (MSMEs) account for most firms in most economies, particularly in developing nations, and are key contributors to job creation and global economic development. However, the most significant impediment to MSME development in low- and middle-income countries is a lack of access to both investment and working capital financing. Due to a lack of essential track record, appropriate collateral, and credit history, MSMEs are frequently denied business loans by traditional lending institutions. In addition, MSMEs face institutional, structural, and non-financ

Patients and healthcare professionals' perspectives on the implementation of shared decision making in multiple myeloma: a multinational qualitative study.

BACKGROUND: Shared decision making (SDM) is highly relevant in oncology and cancer care, yet its application within multiple myeloma (MM) remains underexplored. This study aims to (1) investigate SDM implementation in MM clinical practice, (2) assess the role of various stakeholders next to haematologists in the SDM process, and (3) identify barriers and potential solutions to SDM implementation in MM care. METHODS: This qualitative study consisted of semi-structured interviews with patients (n = 39), haematologists (n = 15), and haematology nurses (n = 5) from nine countries in Europe and Is

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… For patients, the questionnaire also featured disease-specific questions and items to assess their health status next to the three brief screening questions from Chew et al. [ 26 ] to evaluate patients’ health literacy. … The majority of patients demonstrated adequate health literacy, though a small number exhibited marginal health literacy. On average, patients had been under the care of their haematologist for 4 years and 6 months (min = 6 months, max = 11 years). …

Interrupted Identities: Autologous Stem Cell Transplant in Patients With Multiple Myeloma.

In the current study, we sought to examine whether patients incorporate the identity of a patient receiving autologous stem cell transplant (ASCT) for multiple myeloma (MM) into their daily lives. Multiple myeloma patients receive education before initiating the ASCT treatment process. In this ethnographic study using interpretative phenomenological analysis, we observed pretransplant education visits with 30 MM patients, followed by semistructured interviews in their hospital rooms during transplant. The experience of receiving ASCT for MM required effort by patients to not only maintain thei

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… Abbreviations: : FACT-G7, Functional Assessment of Cancer Therapy (possible scores = 0-28); Health literacy question, How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy? … Characteristics | Total sample, n = 30 Median age (range), years | 61 (41-72) Male, n (%) | 18 (60) Race, n (%) | Asian | 1 (3) Black | 12 (40) White | 17 (57) FACT-G7, median (range) | 15 (10–21) Health literacy question | Never | 15 (50) Rarely | 4 (13) Sometimes | 8 (27) Often | 2 (7) Always | 1 …

Знания, отношение и практика у пациентов с множественной миеломой: перекрестное исследование с использованием моделей структурного уравнения в одной третичной больнице в Вэньчжоу, Китай.

ВВЕДЕНИЕ: Это исследование было направлено на оценку знаний, отношения и практики пациентов с множественной миеломой (ММ) в отношении этого заболевания. МЕТОДЫ: Это перекрестное исследование проводилось среди пациентов с MM в Руанской народной больнице в провинции Чжэцзян, Китай, в период с августа по ноябрь. 2024. Данные собирались с использованием структурированного вопросника, предназначенного для сбора демографической информации и оценки КПД участников. РЕЗУЛЬТАТЫ: Всего 442 Были проанализированы действительные вопросники. Среди респондентов 226 (В тыс.51.1%) были мужчинами, и 298 (В тыс.6

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… , health literacy may interact with emotional burden to influence both attitudes and day‑to‑day self‑management. … The role of health literacy in cancer care: a mixed studies systematic review . PLoS One . 2021 ; 16 ( 11 ): e0259815 . doi: 10.1371/journal.pone.0259815 34767562 PMC8589210 13. Ryman C , Warnicke C , Hugosson S , Zakrisson AB , Dahlberg K . Health literacy in cancer care: a systematic review . …

Improving Access to Patient Education: an Audit of Extant Educational Materials.

Health information exchange between provider and patient, along with patient participation in their care (self-management), can lead to improved health outcomes. A step towards achieving better outcomes is the systematic provision of education materials to patients and caregivers throughout the cancer trajectory. An audit of patient education (PE) materials was conducted at a cancer center to identify content gaps and determine areas for future development. The PE audit was conducted in all outpatient clinics (13) and clinic-specific PE materials were identified, reviewed, and categorized by c

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… Individuals with adequate and low health literacy also had trouble correctly remembering this information [ 8 ]. … Egbert N Nanna KM Health literacy: challenges and strategies Online J Issues Nurs 2009 14 3 E1 10.3912/OJIN.Vol14No03Man01 2. …

Facing financial barriers to healthcare: patient-informed adaptation of a conceptual framework for adults with a history of cancer.

BackgroundCancer-related financial hardship is associated with negative clinical outcomes, which may be partially explained by cost-related delayed or forgone care in response to financial barriers. We sought to understand patient experiences facing financial barriers to medical care following a cancer diagnosis.MethodsWe conducted virtual, semi-structured interviews in Fall 2022 with 20 adults with a history of cancer who had experienced cancer-related financial hardship in the prior year. We used template analysis within a pragmatic paradigm, combining constructivist and critical realist the

Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review.

BackgroundDigital health portals are online platforms allowing individuals to access their personal information and communicate with health care providers. While digital health portals have been associated with improved health outcomes and more streamlined health care processes, their impact on individuals living with or beyond cancer remains underexplored.ObjectiveThis scoping review aimed to (1) identify the portal functionalities reported in studies involving individuals living with or beyond cancer, as well as the outcomes assessed, and (2) explore the diversity of participant characterist

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… literacy Higher health literacy felt more comfortable navigating and understanding the portal [ 35 ] Language English-speaking patients were more likely to use e-messaging, and those requiring an interpreter were less likely to use it [ 39 ] Caregivers who spoke English were significantly more likely … Additional vulnerability-related characteristics were also identified, including language spoken [ 39 , 69 ], access to computers [ 61 , 64 ], health literacy [ 35 ], and digital proficiency [ 42 , 64 ]. These factors may influence equitable access to and use of patient portals. …