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Are the Physical Environments of Treatment Centres Meeting Recommendations for Patient-Centred Care? Perceptions of Haematological Cancer Patients.

The physical environment of a treatment centre may impact the well-being of patients and their perceptions of care. Outpatients with haematological cancer may be in contact with the treatment centre over long periods and could be particularly affected. This study aimed to identify haematological cancer patients' perceptions of supportive design elements in the hospital they attended and associations with self-reported mood or well-being. Outpatients from three large metropolitan hospitals in Australia were mailed a self-report questionnaire and responded to statements about the treatment centr

Resuscitating Patient Rights during the Pandemic: COVID-19 and the Risk of Resurgent Paternalism.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate (DNR) orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurg

Work, daily activities and leisure after cancer.

ObjectiveDetermine if cancer survivors have lower participation in paid work, more limitations in daily activities or more limitations in leisure compared with those without cancer, stratified by age (working age ≤65 years; retirement age >65 years). Secondary objectives are identifying sociodemographic or clinical factors associated with work, daily activities or leisure and analysis of the relationship between work, daily activities and leisure.MethodsSecondary analyses, using logistic regression, were performed on three cohorts (lymphoma, prostate and thyroid cancer) from the Dutch Patient

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… While this could also limit generalisability to settings with less generous financial supports, the majority of respondents in this study were more than 2 years after diagnosis, so were unlikely to be receiving sick leave at the time of their survey. …

The State of Cancer Care in the United Arab Emirates in 2022.

Cancer is the third-leading cause of death in the United Arab Emirates (UAE); cancer care in the UAE has evolved dramatically over the last 40 years, from a single center in Al Ain in 1981 to more than 30 cancer centers and clinics across the UAE, with at least four comprehensive cancer centers in the UAE nowadays. Despite the significant progress in medical care, cancer quality control across the UAE is still lacking, with significant variations in cancer care across the cancer centers. Access to clinical trials is still hampered by a lack of expertise and research infrastructure and a small

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… believe that there are newer treatment options for cancer abroad (drugs not available in the UAE, new technologies, and expertise only available abroad); and The patient and their families may receive a generous government allowance while away, in addition to the patient’s full paid leave while on sick … leave abroad; this sick leave is not as flexible for patients treated locally in the UAE. …

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

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

The patient reported transformation of identity and voice in life-limiting illness.

BackgroundIndividuals facing life-limiting illnesses undergo a profound transformation that encompasses significant physiological changes, in the level of medical care received, and a shift in overall goals of care. This transformation is irreversible and involuntary. However, individuals living with mental health conditions and life-limiting illnesses are not able to go through transformation due to diagnostic overshadowing. Previous research has examined the transformations experienced by caregivers in the context of spinal cord injuries, as well as by professional caregivers in palliative c

The influence of baseline characteristics, treatment and depression on health-related quality of life in patients with multiple myeloma: a prospective observational study.

BACKGROUND: Multiple myeloma (MM) is the third most common hematologic malignancy with increasing importance due to improving treatment strategies and long-term outcomes in an aging population. This study aims to analyse influencing factors on health-related quality of life (HRQoL), such as treatment strategies, participation in a clinical trial and patient characteristics like anxiety, depression, gender, and age. A better understanding of the individual factors in context with HRQoL could provide a helpful instrument for clinical decisions. METHODS: In this prospective observational study,

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… It included information on nationality, age, gender, marital status, education level, occupation status, sick leave, occupational disability, and income. The questionnaires were paper-based, filled in either during a visit or at home. …

Cost analysis of skeletal-related events in Spanish patients with bone metastases from solid tumours.

PurposeTo estimate the cost per skeletal-related event (SRE) in patients with bone metastases secondary to solid tumours in the Spanish healthcare setting.MethodsPatients diagnosed with bone metastases secondary to breast, prostate or lung cancer were included in this multicentre, observational study. SREs are defined as pathologic fracture (vertebral and non-vertebral fracture), radiation to bone, spinal cord compression or surgery to bone. Health resource utilisation associated with these events (inpatient stays, outpatient, emergency room and home health visits, nursing home stays and proce

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… It should also be noted that direct non-healthcare costs or indirect costs such as transportation to/from hospital visits, payment of caregivers, sick leave, etc. were also not considered in this analysis. …

RELIEF: A Digital Health Tool for the Remote Self-Reporting of Symptoms in Patients with Cancer to Address Palliative Care Needs and Minimize Emergency Department Visits.

The lack of timely symptom reporting remains a barrier to effective symptom management and comfort for patients with cancer-related palliative care needs. Poor symptom management at home can lead to unwanted outcomes, such as emergency department visits and death in hospital. We developed and evaluated RELIEF, a remote symptom self-reporting app for community patients with palliative care needs. A pilot feasibility study was conducted at a large, community hospital in Ontario, Canada. Patients self-reported their symptoms each morning using validated clinical symptom measures and RELIEF would

Bridging Perspectives: How Canadian Patients and Caregivers View Quality of Life in Multiple Myeloma Compared to Validated Instruments.

Background: Validated patient- and caregiver-reported outcome (PRO and CRO) questionnaires are widely used to assess quality of life (QoL) in multiple myeloma (MM). However, most were developed before recent therapeutic advances that have modified disease trajectories and may no longer fully reflect patients' and caregivers' experiences. Methods: A Canadian cross-sectional observational study was conducted in collaboration with the PROxy Network and Myeloma Canada. Patients with MM completed the EORTC QLQ-C30, EORTC QLQ-MY20, EQ-5D-5L, and ESAS-R questionnaires and caregivers of patients with

Терапия, возбуждающая движение в реабилитации взрослых после разрушения: обзор Umbrella.

Справочная информация/цели: Строке является одной из главных причин инвалидности среди взрослых, поскольку гемипарез влияет на моторные функции и повседневную деятельность. В результате интенсивного использования поврежденных конечностей эффективная функциональная реабилитация оказалась эффективной. Цель этого исследования состояла в том, чтобы оценить воздействие CMT на реабилитацию конечностей (UL) у инсультных больных с уделением особого внимания восстановлению моторных систем, интеграции в повседневную жизнь (ADLs) и преодолению барьеров на пути клинического осуществления. Методы: Системат

Церковная боль и воздействие на качество жизни пациентов с множественным склерозом.

Основная цель этого исследования заключалась в оценке воздействия шейной боли на качество жизни пациентов с множественным склерозом по сравнению с группой здоровых людей (без болезней центральной нервной системы). Материалы и методы: В период с ноября 2023 года по август 2024 года данные были собраны в специализированном госпитале Сент-Лукаша в Коньском (Польша). Критерием включения в это исследование были следующие: возраст (20-50 лет), женщины и мужчины, здоровые люди (без болезней центральной нервной системы) и люди, страдающие множественным склерозом. Лицам из исследовательской группы был

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… However, the quick detection of pain may contribute to a reduced number of sick leaves being issued and, consequently, to a reduction in work incapacity [ 45 ]. …

Physical function in patients newly diagnosed with multiple myeloma; a Danish cohort study.

BACKGROUND: Multiple myeloma is a cancer in the bone marrow causing bone destruction. Patients experience various symptoms related to the disease and/or treatment, such as pain and fatigue, leading to poorer quality of life. The symptom burden might affect physical function and physical activity levels, posing a risk of physical deterioration. The aim was to investigate whether physical function in newly diagnosed patients with multiple myeloma differs from the reference values of the normal population and other cancer patients. METHODS: The study is a cross sectional descriptive analysis of

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… Over half were retired (56%), and 14% were on sick leave. Bone disease was present in 73% of the participants, and in three participants this caused restriction in testing (SST and unilateral knee extension strength) due to femoral bone involvement. Thirty-three per cent had fractures ( n = 33). …

Symptom burden, psychological distress, and health-related quality of life in cancer survivors with pelvic late radiation tissue injuries

Abstract Purpose Curative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors’ LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors. Methods Cancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composi

Living with relapsed myeloma: Symptoms and self-care strategies.

Aims and objectivesTo explore which symptoms relapsed myeloma patients experience and what self-care strategies are used.MethodsThis was a qualitative study utilising focus group interviews (n = 4) with relapsed myeloma patients (n = 15) and carers (n = 9). The focus groups were analysed and guided by thematic analysis.ResultsThree major themes with subthemes were identified following analysis of the interview data: "difficult symptoms; "self-care" and "feeling vulnerable." These findings indicate the challenges relapsed myeloma patients experience with ongoing symptoms and highlight the impor

Cross-Cultural Validation of the COmprehensive Score for Financial Toxicity (COST) Measure in an Australian Sample.

IntroductionThe COmprehensive Score for Financial Toxicity (COST) measure developed in the United States measures the financial impact resulting from cancer and its treatment. This paper reports on an Australian cross-cultural validation of the COST measure.MethodsParticipant eligibility criteria included individuals aged ≥ 18, undergoing or completed primary treatment for cancer. Immediate family members of patients were also eligible for Phase 1. Face and content validity were assessed through concurrent interviews and a brief survey (Phase 1). The subsequent revised version of COST was fiel

Exploring motivations of peer supporters for caregivers of patients with hematological malignancies-a qualitative study.

PurposeSocial support interventions, particularly peer support from former family caregivers, offer unique assistance to caregivers of newly diagnosed patients. Since voluntary peer support is driven by personal choice, understanding the motivations for participating and how motivation evolves over time is essential. This study explores the motivations for becoming a peer support provider for family caregivers of patients with hematological malignancies and how motivation changes over time.MethodsThis qualitative study encompasses 18 semi-structured interviews with family caregivers providing

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… During that period, she was feeling overwhelmed by the situation, and we discussed the option of taking sick leave, which she eventually decided to do. I think that helped a lot, and I could sense that I was able to support her. …

Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts.

BackgroundLight chain (AL) amyloidosis is a rare and progressive disease that affects myriad organs and systems. Patients with cardiac involvement have the highest risk of death. This report compiles findings across three cohorts of patients with AL amyloidosis to understand patterns of employment and work impacts.MethodsData came from three cohorts recruited through patient advocacy organizations in the US. Patients in Cohort 1 completed the SF-36v2® Health Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific Health Problem (WPAI) questionnaire, and the 12-item Kansas C

Incidence and cost of treatment-emergent comorbid events in insured patients with chronic hepatitis C virus infection: a retrospective cohort study.

BackgroundTreatment-emergent comorbid events (TECs) are common In patients initiating treatment with pegylated interferon alpha (PEG-IFN-alfa) and ribavirin for chronic hepatitis C virus (HCV) infection. The purpose of this study was to estimate the incidence and incremental cost of these events.MethodsIn a retrospective cohort analysis of healthcare claims, we studied patients with HCV who were newly treated with PEG-IFN-alfa/ribavirin between 2006 and 2008. TECs were defined by new medical/pharmacy claims for predefined conditions in the 12 months after treatment initiation. The net incremen

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… In a study that reviewed healthcare claims from employees at a major US corporation, nearly 20% of the costs of depressive illness were related to disability, and this study did not take into account lost productivity or sick leave [ 28 ]. …