How Women and Men with Parkinson's Disease Approach Decision-Making for Deep Brain Stimulation Surgery.

Background: Women make up only 23% to 30% of recipients for deep brain stimulation (DBS) surgery for Parkinson's disease (PD), a discrepancy that is not accounted for by differences in disease incidence. One of the many factors that may contribute to this gap includes gender differences in decision-making.

Objective: The aim was to explore how women and men approach the decision for DBS in terms of informational needs, weighing risks and benefits, and decision-making.

The Economic Burden of Heart Failure with Reduced Ejection Fraction: Living Longer but Poorer?

Treatment of heart failure with reduced ejection fraction (HFrEF) has benefitted from a proliferation of new medications and devices. These treatments carry important clinical benefits, but also come with costs relevant to payers, providers, and patients. Patient out-of-pocket costs have been implicated in the avoidance of medical care, nonadherence to medications, and the exacerbation of health care disparities.

Breast Cancer Surgery: A Qualitative Exploration of Concerns Over Time.

Introduction: As outcomes for breast cancer patients improve, addressing the side effects and distress of treatment can optimize survivorship. Although distress in breast cancer is well known in literature, there is a lack of information on how these concerns change through the phases of the cancer care continuum. Therefore, this study investigates the longitudinal trajectory of worry in patients with nonmetastatic breast cancer.

The Natural History of Disability and Caregiving Before and After Long-Term Care Entry.

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown.

Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants.

The Economic Burden of Heart Failure with Reduced Ejection Fraction: Living Longer but Poorer?

Treatment of heart failure with reduced ejection fraction (HFrEF) has benefitted from a proliferation of new medications and devices. These treatments carry important clinical benefits, but also come with costs relevant to payers, providers, and patients. Patient out-of-pocket costs have been implicated in the avoidance of medical care, nonadherence to medications, and the exacerbation of health care disparities.

Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype.

Clinical decision aids around long-term care can help support persons living with dementia (PLWD), family care partners, and healthcare providers navigate current and future care decisions. This study describes the iterative development of a long-term care planning dementia decision aid and explores care partner and geriatric providers' insights regarding its acceptability and usability. Using a convergent parallel mixed methods design, we gathered surveys and completed interviews with 11 care partners and 11 providers.

No One-Size-Fits-All: Sexual Health Education Preferences in Patients with Breast Cancer.

Background: Using explanatory mixed methods, we characterize the education that patients with breast cancer received about potential sexual health effects of treatment and explore preferences in format, content, and timing of education.

Patients And Methods: Adult patients with stage 0-IV breast cancer seen at an academic breast center during December 2020 were emailed questionnaires assessing sexual health symptoms experienced during treatment. Patients interested in further study involvement were invited to participate in semistructured interviews.

Early Trajectories of Patient Reported Outcomes in Breast Cancer Patients Undergoing Lumpectomy Versus Mastectomy.

Purpose: This study was designed to: (1) characterize longitudinal patient-reported outcomes (PROs) between breast cancer patients undergoing lumpectomy and mastectomy and (2) compare return to baseline scores at 3 months and 6 months postoperatively.

Methods: Newly diagnosed breast cancer patients seen at an academic breast center between June 2019 and February 2021 were invited to participate in longitudinal PRO surveys at their initial clinic visit. If willing to participate, patients were emailed the validated BREAST-Q™ questionnaire at the initial clinic visit (baseline), 2 weeks after surgery, and then every 3 months for the first year.

'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

Objective: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians.

Design: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach.

Shared Decision-Making for Left Ventricular Assist Devices: Rationale and Design of a Nationwide Dissemination and Implementation Project.

Background The left ventricular assist device (LVAD) has become a common medical option for patients with end-stage heart failure. Although patients' chances of survival may increase with an LVAD compared with medical therapy, the LVAD poses many risks and requires major lifestyle changes, thus making it a complex medical decision. Our prior work found that a decision aid for LVADs significantly increased decision quality for both patients and caregivers and was successfully implemented at 6 LVAD programs.

"I just need to know they are going to do what they say they're going to do with my mom." Understanding hospice expectations from the patient, caregiver and admission nurse perspective.

Objective: The objective of this paper is to understand patient, caregiver and hospice admission nurses needs during the hospice admission conversation so patients and their caregivers can make informed decisions about hospice.

Methods: Resulting data set from this qualitative study included 60 h of observation and a total of 30 interviews with caregivers, patients and hospice admission nurses. Participants were from a large non-profit hospice; observation settings included: home, hospital and skilled nursing facility.

Hospice, She Yelped: Examining the Quantity and Quality of Decision Support Available to Patient and Families Considering Hospice.

Context: Whether to engage hospice is one of the most difficult medical decisions patients and families make. Meanwhile, misperceptions about hospice persist. Within this context, the breadth and depth of patient decision support materials for hospice are unknown.

Making decisions about implantable cardioverter-defibrillators from implantation to end of life: an integrative review of patients' perspectives.

Implantable cardioverter-defibrillators (ICDs) are used for patients at risk of sudden cardiac death. Patients considering ICD therapy are faced with several preference-sensitive decisions. Our aim was to explore patients' ICD decision-making experiences from the decision to implant to the consideration of deactivation at end of life.

Variation in use of dual-chamber implantable cardioverter-defibrillators: results from the national cardiovascular data registry.

Background: Among patients without an indication for a pacemaker, current evidence is inconclusive whether a dual-chamber implantable cardioverter-defibrillator (ICD) is superior to a single-chamber ICD. The current use of dual-chamber ICDs is not well characterized.

Methods: We conducted a cross-sectional study exploring hospital-level variation in the use of dual-chamber ICDs across the United States.

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.

Background: Patients nearing the end of their lives face an array of difficult decisions.

Objective: This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness.

Design: We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service.

Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study.

Background: Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks.

Methods: This qualitative study aims to understand cardiologists' and patients' perspectives about decision making surrounding ICD implantation using semi-structured, in-depth interviews.

Palliative medicine and decision science: the critical need for a shared agenda to foster informed patient choice in serious illness.

Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches.

Regional variations in physicians' attitudes and recommendations surrounding implantable cardioverter-defibrillators.

Introduction: This study was designed to determine if physicians' attitudes and recommendations surrounding implantable cardioverter-defibrillators (ICDs) are regionally associated with ICD use.

Methods And Results: A national sample of 9969 members of the American College of Cardiology was surveyed electronically. Responses were merged with rates of ICD implantation from the National Cardiovascular Data Registry.

Regional variation in the use of implantable cardioverter-defibrillators for primary prevention: results from the National Cardiovascular Data Registry.

Background: Although the use of implantable cardioverter-defibrillators (ICDs) for the primary prevention of sudden cardiac death varies by sex, race, and hospital, geographic variation in ICD use remains unexplored. Our objective was to quantify regional variations in the utilization of primary prevention ICDs in the United States, and to evaluate if an association exists between utilization and physician supply or the proportion of patients meeting the trial inclusion criteria.

Methods And Results: This is a cross-sectional analysis among the Medicare, fee-for-service population from the National Cardiovascular Data Registry.

Regional variations in palliative care: do cardiologists follow guidelines?

Objectives: Regional variation in health care use in the last 6 months of life is well documented. Our objective was to examine whether an association exists between cardiologists' tendencies to discuss palliative care for patients with advanced heart failure and the regional use of health care in the last 6 months of life.

Methods: We performed a national mail survey of a random sample of 994 eligible Cardiologists from the American Medical Association Masterfile.