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Experiences of caregivers of children with spinal muscular atrophy participating in the expanded access program for nusinersen: a longitudinal qualitative study.

BackgroundExpanded access programs (EAPs) allow patients with serious, life-threatening conditions access to drugs prior to their formal approval. Despite the possible benefits for patients, EAPs present several challenges, including uncertainty regarding a drug's efficacy and safety as well as inequities regarding access to treatment. Although the number of EAPs is growing, the experience of patients participating in EAPs has not yet been studied. In Germany, an EAP for the treatment of Spinal Muscular Atrophy (SMA) with nusinersen ran from December 2016 to May 2017). SMA is a rare, progressi

Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD).

BackgroundSpecialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both).MethodsThis was a register-based study of adult patients living in Denmar

'It gives you an understanding you can't get from any book.' The relationship between medical students' and doctors' personal illness experiences and their performance: a qualitative and quantitative study.

BackgroundAnecdotes abound about doctors' personal illness experiences and the effect they have on their empathy and care of patients. We formally investigated the relationship between doctors' and medical students' personal illness experiences, their examination results, preparedness for clinical practice, learning and professional attitudes and behaviour towards patients.MethodsNewly-qualified UK doctors in 2005 (n = 2062/4784), and two cohorts of students at one London medical school (n = 640/749) participated in the quantitative arm of the study. 37 Consultants, 1 Specialist Registrar, 2 C

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… [Senior doctor 3, male] "Personal experience of true grief and bereavement gives you an understanding that you can't get from any theoretical book on the grieving process." …

Factors affecting post-traumatic growth in hematopoietic stem cell transplantation patients in South Korea: a descriptive survey study.

BackgroundWhile most studies on hematopoietic stem cell transplantation (HSCT) have focused on its negative impact, recent research has highlighted the concept of post-traumatic growth (PTG), where individuals experience positive psychological changes after a traumatic event. However, research on PTG in HSCT recipients remains limited. This study aimed to examine PTG as the primary outcome among HSCT recipients and identify key psychosocial and clinical predictors.MethodsAdult HSCT recipients within 1 year of transplantation at a university hospital in Seoul were enrolled from March 2018 to Ma

A Dyadic Approach to Cancer Care: Examining the Feasibility and Preliminary Effectiveness of a Partner-Based Exercise Intervention for Caregivers and Their Care Recipients.

Despite being key partners in the supportive care of the cancer patient, family caregivers are often inadequately prepared for or supported to take on this critical role, subsequently putting their own wellbeing at risk and, by extension, that of the patient. Exercise interventions show promise in mitigating caregiver burden and improving health outcomes for both caregivers and patients; however, the interrelationship between family caregiver and care recipient has gone largely unexplored. Thus, we conducted a single-group pilot study to examine the feasibility and preliminary effectiveness of

[Posttraumatic stress disorder (PTSD) as a consequence of the interaction between an individual genetic susceptibility, a traumatogenic event and a social context].

INTRODUCTION: Why are some individuals more likely than others to develop a posttraumatic stress disorder (PTSD) in the face of similar leve … of human culture in its emancipation with nature, like the question of death and its consequences: bereavement, parentality, transgenerational transmission and organicity often linked to the illness. A therapeutic proposal constitutes an environmental factor par excellence which can be either protective or deleterious. If the traumatic repetition syndrome ha …

Разработка и осуществление мер по улучшению сексуального здоровья женщин, страдающих эндометриозом: протокол исследования смешанных методов и план мероприятий.

Ээндометриоз может оказать негативное воздействие на фертильность, психическое и сексуальное здоровье женщин. Поскольку в ходе проведенных исследований не были всесторонне рассмотрены потребности и стратегии по улучшению сексуального здоровья и разработке необходимых программ и мероприятий для этой группы женщин, цель настоящего исследования заключается в разработке и осуществлении мер по улучшению сексуального здоровья женщин, страдающих эндометриозом. 4 Этапы. фазы 1 - качественное исследование с использованием полуструктурированных бесед для изучения потребностей и стратегий с точки зрения

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… Drug or alcohol dependence (self-report or medical record) Use of medications/hormones known to significantly affect sexual function within 60 days prior to enrollment (e.g., certain antidepressants, antipsychotics, high-dose opioids) Major stressful life events in the past 6 months (e.g., recent bereavement …

Understanding challenges and barriers to quality end-of-life care for patients with hematologic malignancies: a GIMEMA survey.

Patients with hematologic malignancies often receive aggressive end-of-life (EOL) care, which may be partly related to hematologists' discomfort with discontinuing aggressive treatments at EOL. It is therefore important to investigate how hematologists perceive EOL care and how this affects their clinical practice. We assessed a cohort of Italian hematological oncologists through a GIMEMA online survey to explore their attitudes toward standard measures of quality EOL care, their opinions on barriers to providing this care, and potential interventions. EOL quality measures were defined accepta

Unfavorable transcriptome profiles and social disadvantage in hematopoietic cell transplantation: a CIBMTR analysis.

Patient-reported outcomes (PROs) capture subjective social determinants of health (SDOHs), which can affect health outcomes through the stress response pathway. The conserved transcriptional response to adversity (CTRA) is a stress-mediated proinflammatory transcriptomic pattern that has been linked to adverse hematopoietic cell transplant (HCT) outcomes. This study examined the association of pretransplant CTRA with patient-reported SDOHs in allogeneic HCT recipients. In this cross-sectional study, pre-HCT SDOH-related PROs included the 36-Item Short Form Health Survey and the Functional Asse

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… a dysregulated immune response plays an important role in inflammatory pathology. 33 , 34 Expression of the CTRA immunoregulatory pattern results in a global proinflammatory leukocyte phenotype, and it has appeared across a spectrum of adverse psychosocial conditions, including loneliness, poverty, bereavement …

Willingness of advanced cancer patients to receive palliative care and its determinants: A cross-sectional study in Northern Tanzania.

BackgroundThe purpose of this study was to assess willingness of advanced cancer patients to receive palliative care and its determinants at Cancer Care Centre in Kilimanjaro Christian Medical Centre Northern Tanzania.ObjectiveThe purpose of this study was to assess willingness of advanced cancer patients to receive palliative care and its determinants at Cancer Care Centre in Kilimanjaro Christian Medical Centre Northern Tanzania.MethodsThis was an institution-based cross-sectional study and the target population was all advanced cancer patients attending care at Cancer care Centre in Norther

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… However, PC is nowadays acknowledged EoL care that brings various benefits, some benefits include increased care quality, an opportunity for patients to have a peaceful and honorable death, better quality of dying, family caregiver’s advance satisfaction, and bereavement adjustment. …

Late decisions about treatment limitation in patients with cancer: empirical analysis of end-of-life practices in a haematology and oncology unit at a German university hospital.

BackgroundDecisions to limit treatment (DLTs) are important to protect patients from overtreatment but constitute one of the most ethically challenging situations in oncology practice. In the Ethics Policy for Advance Care Planning and Limiting Treatment study (EPAL), we examined how often DLT preceded a patient's death and how early they were determined before (T1) and after (T2) the implementation of an intrainstitutional ethics policy on DLT.MethodsThis prospective quantitative study recruited 1.134 patients with haematological/oncological neoplasia in a period of 2×6 months at the Universi

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… Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665–73. 10.1001/jama.300.14.1665 2. Temel JS, Greer JA, Muzikansky A, et al. …

Health and aging in elderly farmers: the AMI cohort.

BackgroundThe health of the agricultural population has been previously explored, particularly in relation to the farming exposures and among professionally active individuals. However, few studies specifically focused on health and aging among elders retired from agriculture. Yet, this population faces the long-term effects of occupational exposures and multiple difficulties related to living and aging in rural area (limited access to shops, services, and practitioners). However, these difficulties may be counter-balanced by advantages related to healthier lifestyle, richer social support and

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… All the other follow-up visits are conducted by a neuropsychologist but at home, following the same procedures than that of the baseline with: complete standardised neuropsychological testing, important modifications of living environment (house moving, bereavement…), health problems and hospitalization …

Obesity Pillars roundtable: Excessive weight reduction with highly effective anti-obesity medications (heAOMs).

BackgroundHistorically, many anti-obesity medications (AOMs) were withdrawn from development and/or the market due to safety concerns. Another challenge was that, with some exceptions, most of these AOMs had limited weight reducing efficacy. Approved AOMs often did not meet the weight reduction expectations of either clinicians, or their patients. Currently, newer approved and investigational AOMs achieve greater weight reduction than older AOMs. This has prompted an emerging new challenge of "too much weight loss" with some of these highly effective anti-obesity medications (heAOM) - somethin

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… Unfortunately, bereavement is all too common for my patients. I have repeatedly seen patients with severe depression and stress lose their appetite and significantly reduce food intake. …

Поддержка со стороны сверстников в хронических условиях с точки зрения сверстников: систематический обзор.

Цель: Поддержка со стороны сверстников может стать ценным дополнением к обычному уходу за пациентами с хроническими заболеваниями. Хотя выгоды, связанные с поддержкой со стороны сверстников, хорошо задокументированы, в большинстве исследований основное внимание уделяется интересам получателей помощи. Учитывая центральную роль, которую играют сторонники из числа сверстников, их опыт следует рассматривать как не менее важный. В рамках этого систематического обзора обобщается имеющаяся литература, посвященная опыту сочувствующих друг другу лиц с хроническими заболеваниями. Метод: Мы проводили сис

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this review is to synthesize the best available evidence on palliative care experiences of adult … care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains …

The impact of early integrated palliative care on symptom burden and quality of life in patients with advanced breast cancer.

UNLABELLED: Patients with advanced breast cancer endure a high symptom burden and impaired quality of life. This study evaluated the impact of Early Integrated Palliative Care (EIPC) on these outcomes. METHODS: A retrospective cohort study analyzed patients with advanced breast cancer treated between November 2018 and December 2021. Patients were categorized into an EIPC group or a usual care group based on the care model received. Symptom burden (SDS) and sleep quality (PSQI) were assessed at baseline, 6, 12, 18, and 24 weeks. Quality of life (FACT-B), hope (HHI), and anxiety/depression (HAD

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… This finding strongly supports the work and extends it to the cancer population, indicating that early integration of palliative care can alter the aggressiveness of end-of-life care, which is associated with better quality of death and reduced bereavement for caregivers ( 34 ). …

Interdisciplinary collaboration in serious illness conversations in patients with multiple myeloma and caregivers - a qualitative study.

BACKGROUND: There is growing evidence that conversations between healthcare professionals and patients with serious illness can improve the quality of end-of-life cancer care. Yet, there is lack of insight into how different healthcare professions collaborate to deliver serious illness communication, as well as patients' and caregivers' perceptions of this collaboration between the nurse and physician. This study explores the interdisciplinary collaboration between nurses and physicians in serious illness conversations with patients diagnosed with multiple myeloma and their caregivers. METHOD

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… Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665–73. doi: 10.1001/jama.300.14.1665. 9. Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, et al. …

Burning Issues/Hot Topics: The Charcot Foot.

Charcot neuro-osteoarthropathy remains one of the most serious complications of diabetic neuropathy, with the potential for rapid progression to deformity, ulceration and limb-threatening outcomes. The earliest signs and symptoms are often subtle and easily missed, yet early recognition provides a narrow window of opportunity to prevent irreversible structural change. Contemporary diagnostic pathways are underpinned by close clinical observation and correlation of bedside findings with detailed imaging analysis, enabling earlier identification of active disease before collapse occurs. This art

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… The “absolute horror” of feeling “knocked sideways” portrays a sense of “bereavement” and loss of “the life I had”. There is often attribution of blame for developing Charcot foot, directed either at individuals themselves and/or at healthcare professionals [ 22 ]. …

Attitudes, expectations, and lived experiences of cancer patients receiving dendritic cell vaccine therapy in Japan.

ObjectiveImmunotherapeutic approaches to cancer, such as dendritic cell vaccine therapy, promise to improve survival rate but may present unique challenges to patients. However, there is no research on the lived experiences of cancer patients receiving dendritic cell vaccine therapy. The aim of this study was to explore the attitudes, expectations, and experiences of cancer patients receiving dendritic cell vaccine therapy in Japan.MethodsThis was an exploratory qualitative study. A descriptive phenomenological approach was used to investigate the experiences of eight advanced-stage cancer pat

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… Nursing care and nurses' understandings of grief and bereavement among patients and families during cancer illness and death - a scoping review Eur J Oncol Nurs 62 2023 102260 10.1016/j.ejon.2022.102260 36610290 65 Johnston B. Dönmez C.F. Julião M. …

Pressure injury risk assessment for palliative care patients in the acute hospital setting: a scoping review.

BackgroundHospitalised palliative care patients are at risk of pressure injury. The development of pressure injuries causes physical and psychological distress for patients. Therefore, the prevention of hospital-acquired pressure injury is a nursing priority. The first step in prevention is conducting a risk assessment, which should be population-specific. In Australia, four palliative care phases guide care planning for appropriate clinical management of palliative care patients. In phases 1-3, the palliative patient cohort is based on acute care, where patients require medical treatment and/

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… Although, there is a fifth phase i.e., Bereavement, this relates to post-death support provided to family/carers [ 7 ]. …