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Расследование COVID-19-Induced У иранских пациентов с множественным склерозом в пандемическое время.

СОСТОЯНИЕ: Болезнь коронавируса 2019 (В тыс.COVID-19) Вспышка вызвала много проблем, а также осложнения с физическим и психическим здоровьем, включая регуляционное расстройство (AD). Учитывая исключительную важность этого вопроса для уязвимых групп, настоящее исследование должно было быть посвящено изучению COVID-19-induced AD иранских пациентов, страдающих множественным склерозом (MS) 2020. МЕТОДЫ: Применяя проект межсекционных исследований, это исследование было проведено для статистической группы пациентов, страдающих НР. Кроме того, отбор проб осуществлялся в Иране через Porsline в качеств

Protocol for a randomised controlled feasibility trial of an integrated psychosexual intervention for sexual difficulties in people with Multiple Sclerosis: the PIMS trial.

BACKGROUND: Multiple Sclerosis (MS) is a long-term condition that significantly diminishes quality of life (QoL). Sexual difficulties (SDs) are common, but often overlooked symptom, affecting 50-80% of people with MS (PwMS). The emergence of SDs in MS results from the intricate interplay of disease processes, treatments, and psychosocial factors, contributing to a further decline in QoL and adverse effects on body image, relationships, and psychological well-being. Despite the limited treatment options, which mainly include medications and physiotherapy, there is promise in psychological inter

Usability testing of an electronic patient-reported outcome system linked to an electronic chemotherapy prescribing and patient management system for patients with cancer.

BackgroundPeople affected by cancer experience a wide range of symptoms which have a major impact on their functioning and health-related quality of life (HRQoL). One way to measure the impact of cancer symptoms is through the use of patient-reported outcomes.MethodsAn electronic patient-reported outcome (ePRO) application (ChemoPRO®) was designed to be used by cancer patients to report their symptoms and communicate with their clinical team. Usability testing sessions were conducted with people with lived experience of cancer to understand how real users interact with the ChemoPRO® system. On

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

Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care.

PURPOSE: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. METHODS: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. RESULTS: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotion

Contextualizing Measurement: Establishing a Construct and Content Foundation for the Assessment of Cancer-Related Dyadic Efficacy.

This paper illustrates a rigorous approach to the initial phases of scale development when evaluating an existing construct, dyadic efficacy, in a new population. Cancer-related dyadic efficacy represents a couples' confidence in their conjoint abilities to manage the effects of cancer. Two samples of individuals diagnosed with cancer and their partners, along with a professional panel, contributed lay and content expertise, respectively. Thematic analysis was used to describe cancer-related dyadic efficacy and identify content domains. Cancer-related dyadic efficacy was conceptualized as mult

Time's up: the urgency to investigate time toxicity in patients with genitourinary malignancies.

Patients with genitourinary (GU) malignancies have seen the development of multiple life-prolonging treatments in the past decade. As patients and clinicians consider their treatment options along the cancer journey, time spent with healthcare contact, or "time toxicity," has emerged as a new outcome measure that comprehensively considers time receiving cancer care, including planned visits for evaluation and treatment as well as unplanned urgent care addressing complications. Despite its rising study across cancer populations, there has been a surprising lack of work evaluating time toxicity

Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study.

Multiple myeloma (MM) is a common hematologic malignancy, but due to its incurable nature, patients experience many relapses in their lifetime and hence face unique challenges. This mixed-methods study consisting of an online survey and subsequent focus groups aimed to understand how social and identity experiences affected the diagnostic, treatment, and care journey for patients with MM. Twenty-three adult patients with MM participated in this study. The survey participants identified common determinants negatively impacting their health, including mental health concerns (experienced by 90.5%

Оценка ухода за пациентами при множественном склерозе: воздействие комбинированных цифровых инструментов и комплексных стратегий управления.

СПРАВОЧНАЯ ИНФОРМАЦИЯ: Инновации имеют важнейшее значение для удовлетворения потребностей людей, имеющих MS (PwMS), в частности в устранении задержек в диагностике и лечении, а также в поддержке самостоятельного управления пациентами. ЦЕЛИ: Оценка использования цифровых технологий в реальном мире и результатов их применения, а также комплексных стратегий управления НР в Центре Соединенного Королевства. МЕТОДЫ: Цифровые средства для PwMS включали в себя " Пациенты Знают лучше " (случаи личного здоровья) и " CONNECTPlus " (образовательное приложение). Инструменты для специали

Important End-of-Life Topics among Latino Patients and Caregivers Coping with Advanced Cancer.

There is a known end-of-life related disparity among Latino individuals, and there is a need to develop culturally sensitive interventions to help patients and caregivers cope with advanced cancer. Latino patients and caregivers coping with advanced cancer were asked to list important end-of-life topics to culturally inform a psychosocial intervention adaptation process. A qualitative study was conducted, and semi-structured interviews were performed, audio-recorded, and transcribed. Recordings and transcriptions were reviewed and analyzed using thematic content coding. The semi-structured int

Characterizing the Patient Journey in Multiple Myeloma: Qualitative Review.

BACKGROUND: The patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition. OBJECTIVE: In this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients' perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients

What Can Patient Narratives Reveal to Us About the Experience of a Diagnosis of Myeloma? A Qualitative Scoping Review.

In recent years, there have been major advances in treatment options for myeloma and an improved prognosis as a result. There is a wealth of literature that explores the experience of specific treatments from a clinical perspective but there is comparatively little known about the reality of living with myeloma. This research aims to explore the experience of a myeloma diagnosis, to map out key patient experience literature, and examine common themes to support both medical practice and the planning of further research. Following a scoping review methodology, PubMed, StarPlus (the University o

Optimizing Patient Education of Oncology Medications: A Patient Perspective.

The medication information needs of patients with cancer have been primarily studied using quantitative methods and little qualitative research on this topic exists. The purpose of this study was to explore patients' perspectives of optimal oncology medication education provided to patients at the Nova Scotia Health Authority (NSHA). Adult (≥ 18 years) outpatients in medical, gynecological and hematology oncology at NSHA were invited to participate in focus groups, which were audio-recorded, transcribed and analyzed thematically. Three focus groups, including 21 outpatients, were conducted. Fo

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… Fighting cancer together: development and implementation of shared medical appointments to standardize and improve chemotherapy education. Gynecol Oncol. 2016;140(1):114–119. doi: 10.1016/j.ygyno.2015.11.006. 23. Liekweg A, Eckhardt M, Taylor SC, Erdfelder E, Jaehde U. …

Лиминальное пространство между надеждой и горем: феномен неопределенности, испытываемый людьми, живущими с повторно излучающим множественный склероз.

СТРУКТУРА: Люди с хроническим заболеванием, страдающие множественным склерозом, подвергаются различной степени глубокой неопределенности. Неопределенность связана с неблагоприятными психологическими последствиями, такими, как чувство повышенной уязвимости, уклонение от принятия решений, страх, беспокойство, тревожное расстройство и даже депрессия. Исследования в области множественного склероза сосредоточены главным образом на научных, практических и психосоциальных вопросах неопределенности. Для сравнения, экзистенциальная неопределенность была недостаточно изучена, даже несмотря на то, что он

Holding space: a participatory exploration of first nations health professionals' experiences supporting cancer patients through hospital-based treatment.

BackgroundColonial mechanisms continue to inflict trauma on Aboriginal and Torres Strait Islander peoples, the First Nations peoples of Australia. Consequence of this trauma is a disproportionately high rate of cancer mortality experienced among First Nations peoples and inequities in access to cancer services that are culturally responsive. There is a critical need for cancer care that supports First Nations peoples' holistic health and wellbeing. Engagement with First Nations health staff is a known element of culturally safe healthcare, however the experiences of and challenges facing First

A Rebalancing of Financial Valuations and Expectations Moving Forward in the Telehealth Sector as the United States Moves Toward a Post-COVID-19 Reality.

The telehealth sector of health care delivery experienced significant growth at the start of the pandemic as web-based care quickly became essential for the ongoing safety of patients and health care providers, such as clinicians and other health care professionals. After vaccines were introduced, however, telehealth companies lost value as the need for web-based care appeared to lessen. Presently, both existing telehealth companies and new entrants to the space are seeking ways to innovate, gain investor and customer buy-in, and overcome competitors. New companies are hoping to be seen not as

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

Positive fertility outcomes in a female with classic congenital adrenal hyperplasia following bilateral adrenalectomy.

BACKGROUND: Many women suffer from daily distressing symptoms related to lymphedema following breast cancer treatment. Lymphedema, an abnormal accumulation of lymph fluid in the ipsilateral body area or upper limb, remains an ongoing major health problem affecting more than 40% of 3.1 million breast cancer survivors in the United States. Patient-centered care related to lymphedema symptom management is often inadequately addressed in clinical research and practice. mHealth plays a significant role in improving self-care, patient-clinician communication, and access to health information. The-Op

A mixed methods evaluation of patient perspectives on the implementation of an electronic health record-integrated patient-reported symptom and needs monitoring program in cancer care.

BACKGROUND: As cancer centers have increased focus on patient-centered, evidenced-based care, implementing efficient programs that facilitate effective patient-clinician communication remains critical. We implemented an electronic health record-integrated patient-reported symptom and needs monitoring program ('cPRO' for cancer patient-reported outcomes). To aid evaluation of cPRO implementation, we asked patients receiving care in one of three geographical regions of an academic healthcare system about their experiences. METHODS: Using a sequential mixed-methods approach, we collected feedbac

A qualitative study on patients' and their support persons' preferences for receiving one longer consultation or two shorter consultations when being informed about allogeneic hematopoietic stem cell transplantation.

BackgroundAllogeneic hematopoietic stem cell transplantation (alloHSCT) is the only potentially curative treatment option for many patients with hematological disorders but it includes a significant risk of mortality and long-term morbidity. Many patients and their support persons feel overwhelmed when being informed about alloHSCT and may benefit from improvements in consultation style and timing.AimsTo explore, qualitatively, in a sample of hematological cancer patients and their support persons, their preferences for receiving one longer consultation or two shorter consultations when being