Incorporating patient and family preferences into evidence-based medicine

Background Clinicians are encouraged to practice evidence-based medicine (EBM) as well as patient-centered medicine. At times, these paradigms seem to be mutually exclusive and difficult to reconcile. It can become even more challenging when trying to include the preferences of the patient’s family members. This paper discusses the basis for this quandary, providing examples of the real-world impact it has on diagnosis-seeking and treatment decision-making behaviors and how it might inform implementation of EBM practices. Analysis To further explore the role of friends and family in health-care decision making and to understand how patients and families introduce other considerations that may or may not be congruent with a strictly EBM approach, data from two research studies that examined healthcare–seeking behaviors are presented. Both studies explore how family and friends not only can influence health-care decisions but also may be a source of conflict for the patient and/or clinician. Conclusions Illness is a biological and social process. Clinicians who engage in EBM need to acknowledge the social and cultural factors that affect the health-care encounter, understand the important role of those factors in health-care decision making, and expand the paradigm of EBM to incorporate sociocultural influences more explicitly. Moreover, recognition of the influences family members and other caregivers have within the clinical encounter—by offering opinions and participating in treatment-related decision making—is needed and could lead to more efficient and effective health care

Development and preliminary evaluation of a clinical guidance programme for the decision about prophylactic oophorectomy in women undergoing a hysterectomy

Objectives: To develop a decision analysis based and computerised clinical guidance programme (CGP) that provides patient specific guidance on the decision whether or not to undergo a prophylactic oophorectomy to reduce the risk of subsequent ovarian cancer and to undertake a preliminary pilot and evaluation. Subjects: Women who had already agreed to have a hysterectomy who otherwise had no ovarian pathology. Setting: Oophorectomy decision consultation at the outpatient or pre-admission clinic. Methods: A CGP was developed with advice from gynaecologists and patient groups, incorporating a set of Markov models within a decision analytical framework to evaluate the benefits of undergoing a prophylactic oophorectomy or not on the basis of quality adjusted life expectancy, life expectancy, and for varying durations of hormone replacement therapy. Sensitivity analysis and preliminary testing of the CGP were undertaken to compare its overall performance with established guidelines and practice. A small convenience sample of women invited to use the CGP were interviewed, the interviews were taped and transcribed, and a thematic analysis was undertaken. Results: The run time of the programme was 20 minutes, depending on the use of opt outs to default values. The CGP functioned well in preliminary testing. Women were able to use the programme and expressed overall satisfaction with it. Some had reservations about the computerised format and some were surprised at the specificity of the guidance given. Conclusions: A CGP can be developed for a complex healthcare decision. It can give evidence-based health guidance which can be adjusted to account for individual risk factors and reflects a patient’s own values and preferences concerning health outcomes. Future decision aids and support systems need to be developed and evaluated in a way which takes account of the variation in patients’ preferences for inclusion in the decision making process

Patient centred diagnosis: sharing diagnostic decisions with patients in clinical practice.

Patient centred diagnosis is best practised through shared decision making; an iterative dialogue between doctor and patient, whichrespects a patient’s needs, values, preferences, and circumstances. Shared decision making for diagnostic situations differs fundamentally from that for treatment decisions. This has important implications when considering its practical application. The nature of dialogue should be tailored to the specific diagnostic decision; scenarios with higher stakes or uncertainty usually require more detailed conversation

Breaking the Barriers to Specialty Care: Practical Ideas to Improve Health Equity and Reduce Cost - Ensuring High-Quality Specialty Care

Tremendous health outcome inequities remain in the U.S. across race and ethnicity, gender and sexual orientation, socio-economic status, and geography—particularly for those with serious conditions such as lung or skin cancer, HIV/AIDS, or cardiovascular disease.These inequities are driven by a complex set of factors—including distance to a specialist, insurance coverage, provider bias, and a patient's housing and healthy food access. These inequities not only harm patients, resulting in avoidable illness and death, they also drive unnecessary health systems costs.This 5-part series highlights the urgent need to address these issues, providing resources such as case studies, data, and recommendations to help the health care sector make meaningful strides toward achieving equity in specialty care.Top TakeawaysThere are vast inequalities in access to and outcomes from specialty health care in the U.S. These inequalities are worst for minority patients, low-income patients, patients with limited English language proficiency, and patients in rural areas.A number of solutions have emerged to improve health outcomes for minority and medically underserved patients. These solutions fall into three main categories: increasing specialty care availability, ensuring high-quality care, and helping patients engage in care.As these inequities are also significant drivers of health costs, payers, health care provider organizations, and policy makers have a strong incentive to invest in solutions that will both improve outcomes and reduce unnecessary costs. These actors play a critical role in ensuring that equity is embedded into core care delivery at scale.Part 3: "Ensuring High-Quality Specialty Care"New efforts to mitigate provider implicit bias, establish culturally-competent care, and leverage quality improvement approaches help identify and eliminate disparities in care

A Framework for Integrating Oncology Palliative Care in Doctor of Nursing Practice (DNP) Education

Doctor of Nursing Practice (DNP) faculty play a critical role in preparing students to meet the complex needs of the nation as the number of cancer rates and survivors rise (National Cancer Institute, 2018) and as an unprecedented number of older Americans enter into the healthcare system with complicated comorbidities (Whitehead, 2016). Palliative care has dramatically expanded over the past decade and has been increasingly accepted as a standard of care for people with cancer and other serious, chronic, or life-limiting illnesses. Advanced practice registered nurses (APRNs) are recognized as important providers of palliative care (Walling et al., 2017). A 2-day course was held with support from the National Cancer Institute to enhance integration of palliative oncology care into DNP curriculum. The course participants (N = 183), consisting of DNP faculty or deans, practicing DNP clinicians, and students, received detailed annotated slides, case studies, and suggested activities to increase student engagement with the learning process. Course content was developed and delivered by palliative care experts and DNP faculty skilled in curriculum design. Participants were required to develop goals on how to enhance their school\u27s DNP curriculum with the course content. They provided updates regarding their progress at integrating the content into their school\u27s curriculum at 6, 12, and 18 months post course. Results demonstrated an increase in incorporating oncology palliative care in DNP scholarly projects and clinical opportunities. Challenges to inclusion of this content in DNP curricula included lack of: perceived time in curriculum; faculty educated in palliative care; and available clinical sites

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives.

Purpose of review: The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. Recent findings: A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. Summary: Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD