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Making care fit manifesto
For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. In other words, these care plans are designed for ‘patients like this’ rather than for ‘this patient’. To improve this situation, investigators often propose interventions, such as patient decision aids or patient-reported experience measures, which may disrupt clinical practice and increase the work patients must do. These interventions ‘target’ patients, or rather the images, biomarkers, or numbers that represent their d...
Source: Evidence-Based Medicine - January 19, 2023 Category: Internal Medicine Authors: Kunneman, M., Griffioen, I. P. M., Labrie, N. H. M., Kristiansen, M., Montori, V. M., van Beusekom, M. M., the Making Care Fit Working Group, Allwood, Bauer, Beusekom, Buckley, Dinneen, Edgar, Grande, Gravholt, Griffioen, Haddow, Hargraves, Hillen, Kelleh Tags: Open access EBM opinion and debate Source Type: research

One family ’s disastrous experience with a growth-driven long-term care company
by “E-PATIENT” DAVE DEBRONKART Continuing THCB’s occasional series on actual experiences with the health care system. This is the first in a short series about a patient and family experience from one of America’s leading ePatients. I’ve been blogging recently about what happens in American healthcare when predatory investor-driven companies start moving into care industries because the money’s good and enforcement is lax. The first two posts were about recent articles in The New Yorker on companies that are more interested in sales and growth than caring. I now have permission ...
Source: The Health Care Blog - January 10, 2023 Category: Consumer Health News Authors: matthew holt Tags: The Business of Health Care ePatient Dave Patient Experience Respite care Source Type: blogs

The HIV/AIDS Women of Color Initiative Improving Access to and Quality of Care for Women of Color.
Abstract Summary:In September 2009, the Health Resources and Services Administration, (HRSA) HIV-AIDS Bureau funded 11 programs to engage and retain women of color (WoC) living with HIV in care. This field report describes the rationale for this Special Project of National Significance (SPNS) initiative, the 11 programs in terms of their theoretical frameworks as well as the contexts and mechanism of care, and outlines some factors that may influence engaging and retaining WoC in care. PMID: 23377713 [PubMed - in process]
Source: Journal of Health Care for the Poor and Underserved - February 13, 2013 Category: Global & Universal Authors: Blank AE, Espino SL, Eastwood B, Matoff-Stepp S, Xavier J Tags: J Health Care Poor Underserved Source Type: research

Why Do People Think US Health Care is Corrupt? - The Examples of Amgen, Mallinckrodt Settling Charges of Giving Kickbacks to Doctors to Induce them to Prescribe Their Products, While No Individual Suffers Negative Consequences
We recently posted a discussion of the results of Transparency International's 2013 corruption barometer, focusing on the US results.  43% of survey respondents thought US health care is corrupt.  Our coverage, apparently the only substantial discussion of the US results published in the US, got star ranking for a while on Reddit.  But many anonymous commentators dismissed the survey results as coming from a naive public who does not understand health care economics.I submit that one can recognize corruption without a degree in economics.  In fact, as we discussed in the initial post, there is a lot of ...
Source: Health Care Renewal - July 25, 2013 Category: Health Medicine and Bioethics Commentators Tags: Amgen deception kickbacks health care corruption Covidien legal settlements Mallinckrodt Source Type: blogs

Delivering palliative care to patients and caregivers in inner-city communities: Challenges and opportunities.
Abstract Objective: Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities. Methods: Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic i...
Source: Palliative and Supportive Care - October 24, 2013 Category: Palliative Care Authors: Kayser K, Demarco RF, Stokes C, Desanto-Madeya S, Higgins PC Tags: Palliat Support Care Source Type: research

Advance care planning in motor neuron disease: A systematic review.
Abstract OBJECTIVE: Motor neuron disease (MND) is an incurable progressive illness, characterized by incessant deterioration of neuromuscular function. Timely commencement of advance care planning (ACP) may enable patients to participate in future care choices. The present systematic review aimed to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional (HCP) awareness/support, and healthcare outcomes associated with ACP in the MND setting. METHOD: Quantitative and qualitative studies were identified through database searches and eligibility assessed by one ...
Source: Palliative and Supportive Care - October 14, 2015 Category: Palliative Care Authors: Murray L, Butow PN Tags: Palliat Support Care Source Type: research

IAPAC Guidelines for Optimizing the HIV Care Continuum for Adults and Adolescents
Background: An estimated 50% of people living with HIV (PLHIV) globally are unaware of their status. Among those who know their HIV status, many do not receive antiretroviral therapy (ART) in a timely manner, fail to remain engaged in care, or do not achieve sustained viral suppression. Barriers across the HIV care continuum prevent PLHIV from achieving the therapeutic and preventive effects of ART. Methods: A systematic literature search was conducted, and 6132 articles, including randomized controlled trials, observational studies with or without comparators, cross-sectional studies, and descriptive documents, met the i...
Source: Journal of the International Association of Physicians in AIDS Care (JIAPAC) - November 19, 2015 Category: Infectious Diseases Authors: International Advisory Panel on HIV Care Continuum Optimization Tags: Normative Guidance Source Type: research

Community Health Workers' Palliative Care Learning Needs and Training: Results from a Partnership between a US University and a Rural Community Organization in Mpumalanga Province, South Africa.
Abstract The lack of palliative care knowledge among health care providers is a major barrier to adequate care in the rural provinces of South Africa (SA). Three aims: (1) to identify palliative care learning needs of community health workers (CHWs) working in a non-governmental organization (NGO) in Mpumalanga province SA, (2) to develop a training session based on the needs identified by the CHWs, and (3) to describe CHWs' perceptions of the usefulness of the training content. Data were collected from 29 CHWs in focus group interviews. Content analysis identified eight palliative care learning needs: HIV/AIDS, p...
Source: Journal of Health Care for the Poor and Underserved - May 19, 2016 Category: Global & Universal Authors: Campbell C, Baernholdt M Tags: J Health Care Poor Underserved Source Type: research

Opportunities to improve the value of outpatient surgical care.
CONCLUSIONS: Extrapolation based on published studies of the effects of each component suggests that the proposed 3-part composite may lower annual national outpatient surgical spending by as much as one-fifth, while maintaining or improving outcomes and the care experience for patients and clinicians. Pilot testing and evaluation will allow refinement of this composite. PMID: 27662397 [PubMed - as supplied by publisher]
Source: The American Journal of Managed Care - September 24, 2016 Category: Health Management Authors: Erhun F, Malcolm E, Kalani M, Brayton K, Nguyen C, Asch SM, Platchek T, Milstein A Tags: Am J Manag Care Source Type: research

White Book on Physical and Rehabilitation Medicine (PRM) in Europe. Chapter 6. Knowledge and skills of PRM physicians.
Abstract In the context of the White Book of Physical and Rehabilitation Medicine (PRM) in Europe, this paper deals with the fundamentals of PRM from a physiological perspective, looking at the human mechanisms both physical and behavioral which are at the base of PRM physicians' work. After a discussion on the development and evolution of PRM that leads to its unique and specific approach, the mechanisms considered include: - repairing processes (and potential of recovery evaluation): repairing processes are mainly related to the quantity and natural history of diseases and impairments, while potential of recover...
Source: European Journal of Physical and Rehabilitation Medicine - March 24, 2018 Category: Rehabilitation Authors: European Physical and Rehabilitation Medicine Bodies Alliance Tags: Eur J Phys Rehabil Med Source Type: research

Racial/Ethnic Disparities in Failure to Initiate HIV Care: Role of HIV Testing Site, Individual Factors, and Neighborhood Factors, Florida, 2014-2015.
Abstract Delayed initiation of human immunodeficiency virus (HIV) care affects disease progression. To determine the role of HIV testing site and neighborhood- and individual-level factors in racial/ethnic disparities in initiation of care, we examined Florida population-based HIV/AIDS surveillance system records. We performed multilevel Poisson regression to calculate adjusted prevalence ratios (APR) for non-initiation of care by race/ethnicity adjusting for HIV testing site type and individual- and neighborhood-level characteristics. Of 8,913 people diagnosed with HIV during 2014-2015 in the final dataset, 18.3%...
Source: Journal of Health Care for the Poor and Underserved - August 22, 2018 Category: International Medicine & Public Health Authors: Trepka MJ, Sheehan DM, Fennie KP, Mauck DE, Lieb S, Maddox LM, Niyonsenga T Tags: J Health Care Poor Underserved Source Type: research

Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient.
CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death. PMID: 31189325 [PubMed - as supplied by publisher]
Source: The American Journal of Hospice and Palliative Care - June 11, 2019 Category: Palliative Care Authors: Kutcher GR, Soroka JT Tags: Am J Hosp Palliat Care Source Type: research

Palliative Care in the Management of Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome in the Primary Care Setting.
This article reviews the epidemiology of HIV/AIDS, prognostic indicators, frailty, opportunistic infections, specific AIDS-defining malignancies and non-AIDS-defining malignancies, role of palliative care, advance care planning, and the role of HAART in patients dying of late-stage AIDS. PMID: 31375191 [PubMed - in process]
Source: Primary Care - August 5, 2019 Category: Primary Care Authors: Mitchell LR, Shah N, Selwyn PA Tags: Prim Care Source Type: research

African American Older Adults Living with HIV: Exploring Stress, Stigma, and Engagement in HIV Care.
Abstract Limited information is available about factors that affect care engagement among African American older people living with HIV (OPLWH), despite the fact that this is the racial/ethnic group most disproportionally living with HIV/AIDS in the United States. The present mixed methods study examined the experiences of stress, HIV-related stigma, and engagement in care in a sample of 35 African American OPLWH. Quantitative methods measured global stress, HIV-stigma, and engagement in care, while in-depth qualitative interviews captured the lived experiences of HIV care engagement. Engagement in care was modera...
Source: Journal of Health Care for the Poor and Underserved - February 12, 2020 Category: International Medicine & Public Health Authors: Harris LM, Crawford TN, Kerr JC, Thomas TA, Schmidt V Tags: J Health Care Poor Underserved Source Type: research

Having a consistent HIV health care provider and HIV-related clinical outcomes.
CONCLUSIONS: Having a consistent HIV health care provider was associated with a higher likelihood of achieving desirable HIV clinical outcomes among PLWHA. To optimize these outcomes, policy and educational interventions are needed for PLWHA to have consistent HIV health care providers and to establish long-term, consistent physician-patient relationships. PMID: 32672913 [PubMed - in process]
Source: The American Journal of Managed Care - June 30, 2020 Category: Health Management Authors: Wang Z, Lin HC Tags: Am J Manag Care Source Type: research