31,504 results match your criteria patients caregivers


Patient-level barriers and facilitators to completion of patient-reported outcomes measures.

Qual Life Res 2021 Sep 17. Epub 2021 Sep 17.

The Curtis National Hand Center, MedStar Union Memorial Hospital, Baltimore, MD, USA.

Purpose: To identify patient-level barriers and facilitators to completion of patient-reported outcomes measures (PROMs) in a hand and upper extremity clinic in Baltimore, Maryland.

Methods: We conducted 12 h of direct observation of PROM completion (October-November, 2020). Ethnographic observation memos were qualitatively analyzed for barriers and facilitators using rapid thematic analysis. Read More

View Article and Full-Text PDF
September 2021

Trends in Human Papillomavirus Vaccine Safety Concerns and Adverse Event Reporting in the United States.

JAMA Netw Open 2021 Sep 1;4(9):e2124502. Epub 2021 Sep 1.

Center for Healthcare Data, Department of Management, Policy, and Community Health, UTHealth School of Public Health, Houston, Texas.

Importance: In the US, safety concern has been identified as a primary barrier to initiating the human papillomavirus (HPV) vaccine. It is unclear if the public's sentiment concerning HPV vaccine safety aligns with postmarketing vaccine safety surveillance data.

Objective: To perform a parallel assessment of trends in HPV vaccine safety concerns and HPV vaccine adverse event (AE) reporting. Read More

View Article and Full-Text PDF
September 2021

Social and Cultural Challenges in Caring for Latinx Individuals With Kidney Failure in Urban Settings.

JAMA Netw Open 2021 Sep 1;4(9):e2125838. Epub 2021 Sep 1.

Office of Research, Denver Health, Denver, Colorado.

Importance: Latinx individuals with end-stage kidney disease (ESKD) constitute 19% of US patients receiving in-center scheduled hemodialysis. Compared with non-Latinx White patients, Latinx individuals often face poor economic, environmental, and living circumstances. The challenges for health care professionals engendered by these circumstances when Latinx individuals present with ESKD and possible solutions have not been well described. Read More

View Article and Full-Text PDF
September 2021

Substance Use and Misuse: A Pilot Study to Improve Screening and Interventions at a Comprehensive Cancer Hospital.

Clin J Oncol Nurs 2021 Oct;25(5):601-604

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at the Ohio State University Comprehensive Cancer Center.

Mounting evidence suggests patients diagnosed with cancer may be at increased risk for opioid misuse and diversion. Substance use disorders (SUDs), involving prescription medications and/or illegal substances, may significantly compromise the ability of healthcare professionals to deliver high-quality cancer care. A substance use screening pilot was conducted in ambulatory oncology clinics at a large cancer hospital in the midwestern United States. Read More

View Article and Full-Text PDF
October 2021

Non-Hodgkin Lymphoma: Examining Mycosis Fungoides and Sézary Syndrome in the Context of Oncology Nursing.

Clin J Oncol Nurs 2021 Oct;25(5):555-562

Billings Clinic.

Background: Mycosis fungoides and Sézary syndrome are the most common non-Hodgkin lymphomas that manifest primarily in the skin. Although early-stage disease has an excellent long-term survival rate, advanced disease carries a poor survival rate. Given the lengthy and complex clinical course, nurses are at the forefront of education and supportive care management for patients and caregivers. Read More

View Article and Full-Text PDF
October 2021

Risk Assessment of the Door-In-Door-Out Process at Primary Stroke Centers for Patients With Acute Stroke Requiring Transfer to Comprehensive Stroke Centers.

J Am Heart Assoc 2021 Sep 17:e021803. Epub 2021 Sep 17.

Department of Neurology Biological Sciences Division University of Chicago Chicago IL.

Background Patients with acute stroke at non- or primary stroke centers (PSCs) are transferred to comprehensive stroke centers for advanced treatments that reduce disability but experience significant delays in treatment and increased adjusted mortality. This study reports the results of a proactive, systematic, risk assessment of the door-in-door-out process and its application to solution design. Methods and Results A learning collaborative (clinicians, patients, and caregivers) at 2 PSCs and 3 comprehensive stroke centers in Chicago, Illinois participated in a failure modes, effects, and criticality analysis to identify steps in the process; failures of each step, underlying causes; and to characterize each failure's frequency, impact, and safeguards using standardized scores to calculate risk priority and criticality numbers for ranking. Read More

View Article and Full-Text PDF
September 2021

Implementation of the new EU IVD regulation - urgent initiatives are needed to avert impending crisis.

Clin Chem Lab Med 2021 Sep 15. Epub 2021 Sep 15.

Institute for Clinical Chemistry, Medical Faculty Mannheim of Heidelberg University, Mannheim, Germany.

Laboratory medicine in the European Union is at the dawn of a regulatory revolution as it reaches the end of the transition from IVDD 98/79/EC (https://eur-lex.eur-opa.eu/legal-content/EN/TXT/?uri=CELEX%3A31998L0079&qid=1628781352814) to IVDR 2017/746 https://eur-lex. Read More

View Article and Full-Text PDF
September 2021

Assessment of apathy in neurological patients using the Apathy Motivation Index caregiver version.

J Neuropsychol 2021 Sep 16. Epub 2021 Sep 16.

Department of Experimental Psychology, University of Oxford, UK.

Apathy is a common, disabling neuropsychiatric syndrome that occurs across many brain disorders and may be associated with diminished motivation in behavioural, cognitive, emotional and social domains. Assessment is complicated by the variability of symptoms across apathy domains and self-report from patients, which can be misleading due to their lack of insight. Independent evaluation by clinicians also has limitations though if it has to be performed with limited time. Read More

View Article and Full-Text PDF
September 2021

Alcohol use disorder in the COVID-19 era: Position paper of the Italian Society on Alcohol (SIA).

Addict Biol 2021 Sep 16:e13090. Epub 2021 Sep 16.

Department of Translational Medicine, University of Ferrara, Ferrara, Italy.

Coronavirus disease 2019 (COVID-19) first emerged in China in November 2019. Most governments have responded to the COVID-19 pandemic by imposing a lockdown. Some evidence suggests that a period of isolation might have led to a spike in alcohol misuse, and in the case of patients with alcohol use disorder (AUD), social isolation can favour lapse and relapse. Read More

View Article and Full-Text PDF
September 2021

Experiences of informal caregivers of people with dementia with nursing care in acute hospitals: A descriptive mixed-methods study.

J Adv Nurs 2021 Sep 17. Epub 2021 Sep 17.

NHL Stenden University of Applied Science, Leeuwarden, The Netherlands.

Aims: To explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers' situation and the acute hospital environment.

Design: Mixed-methods design.

Methods: The data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. Read More

View Article and Full-Text PDF
September 2021

Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States.

Pharmacoecon Open 2021 Sep 17. Epub 2021 Sep 17.

BioCryst UK Ltd, London, UK.

Background: Hereditary angioedema (HAE) is an inherited chronic rare disease characterised by recurrent swelling attacks that are associated with significant physical and psychological burden. There is limited understanding of the effect of attack location on this burden and of caregiver burden.

Objective: Our objective was to capture the relative burden of HAE health and caregiver states, including different attack locations, through a time trade-off (TTO) analysis involving participants from the general public. Read More

View Article and Full-Text PDF
September 2021

Assessment and Clinical Decision-Making During Imminent Death in Hospice Music Therapy.

J Music Ther 2021 Sep 17. Epub 2021 Sep 17.

Duquesne University, Pittsburgh, PA, USA.

Assessment is a critical aspect of treatment planning, and while there exist standards for facilitating music therapy assessments in a variety of clinical settings, no such standards exist for music therapists in hospice and palliative care. This gap in knowledge, which limits music therapists' ability to provide patients and caregivers best practices promoting supported movement through the dying process, becomes particularly problematic when assessing patients who are imminently dying with a 24-72 hour prognosis. To further develop and define assessment and clinical decision-making processes used by music therapists in hospice and palliative care, the authors used a constructivist grounded theory and situational analysis methodology to analyze interviews of 15 hospice music therapists. Read More

View Article and Full-Text PDF
September 2021

The Importance of Shared Decision-Making for Patients with Glioblastoma.

Patient Prefer Adherence 2021 10;15:2009-2016. Epub 2021 Sep 10.

EndBrainCancer Initiative, Redmond, WA, USA.

Navigating care for patients with cancer can be overwhelming considering the multiple specialists they encounter and the numerous decisions they must make. For patients with glioblastoma (GBM), management is further complicated by a poor prognosis, feelings of isolation, urgency to treat, and cognitive decline associated with this rare and progressive disease. For these reasons, it is imperative that shared decision-making (SDM) be integrated into standard practice to ensure that the risks and benefits of all treatments are discussed and weighed with the patient's expectations and goals in mind. Read More

View Article and Full-Text PDF
September 2021

Early Survivorship after Liver Transplantation: A Qualitative Study Identifying Challenges in Recovery From The Patient and Caregiver Perspective.

Liver Transpl 2021 Sep 16. Epub 2021 Sep 16.

Department of Medicine, Division of Gastroenterology and Hepatology, University of North Carolina (UNC) School of Medicine, Chapel Hill, NC, United States.

Background: Survivorship after liver transplantation (LT) is a novel concept providing a holistic view of the arduous recovery experienced after transplantation. We explored components of early survivorship including physical, emotional, and psychocological challenges to identify intervention targets for improving the recovery process of LT recipients and caregivers.

Methods: Twenty in-person interviews were conducted among adults 3-6 months post-LT. Read More

View Article and Full-Text PDF
September 2021

Patient Portals to Support Palliative and End-of-Life Care: Scoping Review.

J Med Internet Res 2021 Sep 16;23(9):e28797. Epub 2021 Sep 16.

Department of General Internal Medicine, University of Colorado, Aurora, CO, United States.

Background: Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers.

Objective: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature.

Methods: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Read More

View Article and Full-Text PDF
September 2021

Assessment of the perceived stress and burden of family caregivers of the head-and-neck cancer patients at a tertiary care cancer center: A cross-sectional study.

J Cancer Res Ther 2021 Jul-Sep;17(4):1039-1046

Department of Public Health Dentistry, Vivekanandha Dental College and Hospital for Women, Tiruchengode, Tamil Nadu, India.

Introduction: Cancer is a major life-threatening disease and has an impact on both patients and their family members. Caring for cancer patients may lead to several levels of stress which may affect their own health as well as their quality of life.

Aim: To assess the perceived stress and burden of family caregivers of head and neck cancer patients (HNC) attending cancer care centre at a tertiary care centre, Tamil Nadu. Read More

View Article and Full-Text PDF
September 2021

The Impact of Childhood Disease on Hospital Visiting: A Survey of Pediatricians.

J Nippon Med Sch 2021 Sep 14. Epub 2021 Sep 14.

School of Veterinary Medicine, Nippon Veterinary and Life Science University.

Background: The precise timing as to when caregivers should take their children to the hospital is crucial to ensure the health and safety of children. As children cannot make these decisions on their own, caregivers bear the core responsibility for the wellness of their children. The aim of this study was to determine how disease, disabilities and child behavior can influence when and how often caregivers take their children to the hospital. Read More

View Article and Full-Text PDF
September 2021

Domiciliary dentistry clinics: a multiple case study in the province of Quebec, Canada.

BMC Health Serv Res 2021 Sep 15;21(1):972. Epub 2021 Sep 15.

Faculty of Dentistry, McGill University, 2001 McGill College Ave, Montreal, Quebec, H3A 1G1, Canada.

Background: The demand for more flexible and person-centered models of oral healthcare delivery is increasing and while mobile and domiciliary dental services have the potential to increase access to oral healthcare among dependent elderly and people with disabilities; the uptake of this service model by dentists remains low. Therefore, the aim of this study was to understand how existing domiciliary dental services operate within a particular context.

Methods: We used a qualitative descriptive multiple case study design. Read More

View Article and Full-Text PDF
September 2021

Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec.

BMC Fam Pract 2021 Sep 15;22(1):186. Epub 2021 Sep 15.

Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada.

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers' met and unmet needs and to describe their experience. Read More

View Article and Full-Text PDF
September 2021

[Automatic detection of epileptiform potentials and seizures in the EEG].

Fortschr Neurol Psychiatr 2021 Sep 15;89(9):445-458. Epub 2021 Sep 15.

Automatic computer-based algorithms for the detection of epileptiform potentials and seizure patterns on EEG facilitate a time-saving, objective method of quantitative EEG interpretation which is available 7/24. For the automatic detection of interictal epileptiform potentials sensitivities range from 65 to 99% with false positive detections of 0,09 to 13,4 per minute. Recent studies documented equal or even better performance of automatic spike detection programs compared with experienced human EEG readers. Read More

View Article and Full-Text PDF
September 2021

Ethical Considerations in Dementia Diagnosis and Care: AAN Position Statement.

Neurology 2021 Jul;97(2):80-89

From the Department of Neurology (W.C.), University of California San Francisco; Evidence-Based Practice Center (A.Y.T.), ECRI, Plymouth Meeting, PA; Division of Neurology (A.Y.T.), Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia; Department of Neurology (Z.S.), The Pennsylvania State University, Hershey; School of Law (R.J.B.), University of Virginia, Charlottesville; and Department of Neurology (J.A.R.), Lahey Medical Center, Burlington, MA.

Alzheimer disease and other dementias present unique practical challenges for patients, their families, clinicians, and health systems. These challenges reflect not only the growing public health effect of dementia in an aging global population, but also more specific ethical complexities including early loss of patients' capacity to make decisions regarding their own care, the stigma often associated with a dementia diagnosis, the difficulty of balancing concern for patients' welfare with respect for patients' remaining independence, and the effect on the physical, emotional, and financial well-being of family caregivers. Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence). Read More

View Article and Full-Text PDF

Patient and Caregiver Health State Utilities in Tuberous Sclerosis Complex.

Pharmacoecon Open 2021 Sep 15. Epub 2021 Sep 15.

Acaster Lloyd Consulting Ltd, 16 Upper Woburn Place, Bloomsbury, London, WC1H 0BS, UK.

Background: Tuberous sclerosis complex (TSC) is a rare multisystem disorder often associated with treatment-resistant epilepsy. Cost-effectiveness analysis for new antiseizure medications typically requires health state utilities (HSUs) that reflect the burden of a given condition.

Objective: This study aimed to estimate HSUs, with a focus on valuing the impact of seizure type and seizure frequency on health-related quality of life (HRQL) for patients with TSC and their caregivers. Read More

View Article and Full-Text PDF
September 2021

PLAN-e-PSY, a mobile application to improve case management and patient's functioning in first episode psychosis: protocol for an open-label, multicentre, superiority, randomised controlled trial.

BMJ Open 2021 Sep 14;11(9):e050433. Epub 2021 Sep 14.

Service Recherche et Epidémiologie Cliniques, Hospices Civils de Lyon, Pôle de Santé Publique, Lyon, Auvergne-Rhône-Alpes, France.

Introduction: The prognosis of first episode psychosis (FEP), which is a severe disorder, can be notably impaired by patients' disengagement from healthcare providers. Coordinated specialty care with case management is now considered as the gold standard in this population, but there are still challenges for engagement with subsequent functional impairments. Youth-friendly and patient-centred clinical approaches are sought to improve engagement in patients with FEP. Read More

View Article and Full-Text PDF
September 2021

Provider Perspectives on Screening for Social Determinants of Health in Pediatric Settings: A Qualitative Study.

J Pediatr Health Care 2021 Sep 11. Epub 2021 Sep 11.

Introduction: Pediatric settings often screen children and/or caregivers for social determinants of health (SDH) needs. Although SDH awareness rose with COVID, questions remain regarding best practices for SDH screening in pediatric settings.

Method: We assessed pediatric providers' perspectives on integrating SDH screening into patient care. Read More

View Article and Full-Text PDF
September 2021

A systematic review of seizure clusters: Prevalence, risk factors, burden of disease and treatment patterns.

Epilepsy Res 2021 Sep 2;177:106748. Epub 2021 Sep 2.

Yale University School of Medicine, New Haven, CT, USA.

Seizure clusters (SCs) are episodes of consecutive seizures that occur within a short period. The treatment patterns of rescue medications (RMs), as well as the burden of SCs, have not been assessed. A systematic literature search on Embase. Read More

View Article and Full-Text PDF
September 2021

Perspectives of Interstitial Lung Disease Patients and Carers During COVID-19.

Ir Med J 2021 08 19;114(7):410. Epub 2021 Aug 19.

The Irish Lung Fibrosis Association, Dublin, Ireland.

Aim To gain an understanding of the impact of COVID-19 on the daily life, healthcare needs, mental wellbeing and outlook of patients with Interstitial Lung Disease (ILD) and their caregivers. Methods ILD patients and caregivers were invited to participate in a quantitative survey. Respondents could self-select to then participate in in-depth structured telephone interviews. Read More

View Article and Full-Text PDF

Dying within dyads: Stress, sense of security and support during palliative home care.

PLoS One 2021 14;16(9):e0257274. Epub 2021 Sep 14.

Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.

Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security.

Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. Read More

View Article and Full-Text PDF
September 2021

Who Are You? The Study of Personality in Patients With Anterograde Amnesia.

Psychol Sci 2021 Sep 14:9567976211007463. Epub 2021 Sep 14.

Laureate Institute for Brain Research, Tulsa, Oklahoma.

Little is known about the role of declarative memory in the ongoing perception of one's personality. Seven individuals who developed a rare and severe type of anterograde amnesia following damage to their medial temporal lobes were identified from our neurological patient registry. We examined the stability of their personality ratings on the Big Five Inventory over five retest periods and assessed the accuracy of their ratings via analyses of self-caregiver agreement. Read More

View Article and Full-Text PDF
September 2021

Asthma control and quality of life of asthmatic children and their caregivers.

Rev Med Inst Mex Seguro Soc 2020 09 1;58(5):548-556. Epub 2020 Sep 1.

Instituto Mexicano del Seguro Social, Centro Médico Nacional La Raza, Hospital de Especialidades "Dr. Antonio Fraga Mouret", Curso de Especialidad en Epidemiología. Ciudad de México, México.

Background: Uncontrolled asthma impacts on quality of life of patients, but also in the one of caregivers; therefore, adequate asthma control is the main goal in the treatment of asthma.

Objective: To assess how the asthma control and other environmental factors are associated to the quality of life in asthmatic children and their caregivers.

Method: The Asthma Control Test was administered to patients, and a questionnaire on quality of life was given to patients and their caregivers. Read More

View Article and Full-Text PDF
September 2020