P38– Patient-centered guidan identifying evidence on patient preferences for NICE short clinical guidelines

Abstract Health literacy and palliative care have been receiving more attention within health care organizations and systems in recent years. Both can offer a pathway to care that is better for patients and has the potential to be of high value. A health literate approach to palliative care provides patient-centered care that is better aligned with patient preferences and needs.

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Patient desires: A model for assessment of patient preferences for care of severe or terminal illness

Palliative & Supportive Care ◽

10.1017/s1478951505050455 ◽

2005 ◽

Vol 3 (4) ◽

pp. 289-299 ◽

Cited By ~ 19

Author(s):

KAREN M. KNOPS ◽

MALATHI SRINIVASAN ◽

FREDRICK J. MEYERS

Keyword(s):

Patient Preferences ◽

Terminal Illness ◽

Medical Professional ◽

Patient Centered ◽

Patients With Cancer ◽

Patient Goals ◽

Centered Care ◽

Preferences For Care ◽

Future Work

Objective: Patient-centered care is better achieved through a comprehensive understanding of patients' preferences for how they want to live their life and how they want to influence their own death. Though much has been written on identifying goals of care, it is often difficult for clinicians to articulate patient goals to guide care planning. We explored the literature on patient's preferences for their care in chronic or life-limiting illness to develop a model for assessment of patient perspectives. We then illustrated our model with composite patients from our clinics and we provide questions to guide patient discussion.Methods: We searched MEDLINE from 1986 to 2004 for primary research articles that relate primarily to a patient's preferences for his or her care. We reviewed over 3500 titles, abstracts, and research papers. Hundreds of articles described patients' quality of life, health status, or satisfaction. We excluded consensus guidelines, non-English papers, reviews, and articles focused on medical professional perspectives. Forty-eight studies focused primarily on patient preferences. Using an iterative process, we identified unique issues and broader themes in patients' desires for their care.Results: Studies focused on patients with cancer, those in hospice or those with terminal disease. Three domains emerged: patient feelings about disease, feelings about suffering, and feelings about the circumstances of death. Attention was given to the differences between patients in terms of the strength and persistence of feelings in each domain.Significance of results: Based on existing data, there are three fundamental domains of patient perspective that influence preferences for care. These domains can be assessed by the care team to guide the development of a plan of care and to identify areas of conflict. Our review identifies gaps in the end-of-life literature and areas for future work in patient preferences.

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The challenge of determining appropriate care in the era of patient-centered care and rising health care costs

Journal of Health Services Research & Policy ◽

10.1177/1355819618815521 ◽

2018 ◽

Vol 24 (3) ◽

pp. 201-206 ◽

Cited By ~ 7

Author(s):

Ian Coulter ◽

Patricia Herman ◽

Gery Ryan ◽

Lara Hilton ◽

Ron D. Hays ◽

...

Keyword(s):

Patient Preferences ◽

The United States ◽

Patient Centered Care ◽

Cost Of Care ◽

Patient Centered ◽

Inappropriate Care ◽

Appropriateness Of Care ◽

Centered Care ◽

The Cost ◽

Care Costs

Appropriateness of care is typically determined in the United States by evidence on efficacy and safety, combined with the judgments of experts in research and clinical practice, but without consideration of the cost of care or patient preferences. The shift in focus towards patient-centered care calls for consideration of outcomes that are important to patients, accommodation of patient preferences, and incorporation of the costs of care in patient-provider shared clinical decisions. The RAND/UCLA Appropriateness method was designed to determine rates of appropriate or inappropriate care, but the method did not include patient preferences or costs. This essay examines how methods of studying appropriateness can be made more patient-centered by describing a modification of the RAND/UCLA method by including patient outcomes, preferences, and costs.

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Decision making in clinical stage I (CSI) testicular cancer (TC).

Journal of Clinical Oncology ◽

10.1200/jco.2012.30.15_suppl.e15034 ◽

2012 ◽

Vol 30 (15_suppl) ◽

pp. e15034-e15034

Author(s):

Giovannella Palmieri ◽

Lucia Nappi ◽

Caterina Condello ◽

Luigi Formisano ◽

Piera Federico ◽

...

Keyword(s):

Decision Making ◽

Patient Preferences ◽

Multidisciplinary Approach ◽

Decision Aids ◽

Clinical Stage ◽

Treatment Options ◽

Patient Centered ◽

Key Points ◽

Open Question

e15034 Background: Optimal management of CSI seminomatous (S) and nonseminomatous (NS) TC is an open question. Quality of life and patient preferences are the principal end-points for the best treatment choice. Multidisciplinary approach is required for CSI TC patients to allow an individualized treatment with a patient-centered approach and an active participation in decisions. The “shared decision making” (SDM) is the prevailing approach because patients together with clinicians arrive at a mutually agreed-on choice. We have a project concerning the involvement of patients with CSI TC in the SDM. Methods: We used some key points of SDM: define the problem; treatment options; discuss pros/cons; clarify patient preferences; clarify the patient’s understanding. Educational material are offered to patients. From 2005 to 2012, 32 patients with CSI TC were evaluated. For each patient some clinical and socio-demographic features, type of treatment chosen and some sequel related to treatment were analyzed. Results: Patients characteristics are reported in the table. 4 S patients chose surveillance, 10 chemotherapy and 6 radiotherapy. 2 NS patients chose surveillance, 9 chemotherapy. 4 relapsed: 1 S patient after 13 months from chemotherapy and 1 during the surveillance after 24 months. 2 NS patients relapsed after 12 and 18 months both during the surveillance. All relapsed patients received chemotherapy. Metabolic alterations were analyzed. 1 S patient treated with chemotherapy had a cardiovascular accident. Conclusions: We observed an high gap between surveillance and the active treatments: there is no best choice for every one so we should improve decision-making process and decision aids into the management of CSI patients with TC. [Table: see text]

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How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

Health Expectations ◽

10.1111/hex.13099 ◽

2020 ◽

Vol 23 (5) ◽

pp. 1028-1036 ◽

Cited By ~ 1

Author(s):

Claire Kim ◽

Melissa J. Armstrong ◽

Whitney B. Berta ◽

Anna R. Gagliardi

Keyword(s):

Scoping Review ◽

Patient Preferences ◽

Clinical Guidelines

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PATIENT-CENTERED DECISION MAKING: LESSONS FROM MULTI-CRITERIA DECISION ANALYSIS FOR QUANTIFYING PATIENT PREFERENCES

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462317001118 ◽

2017 ◽

Vol 34 (1) ◽

pp. 105-110 ◽

Cited By ~ 6

Author(s):

Kevin Marsh ◽

J. Jaime Caro ◽

Erica Zaiser ◽

James Heywood ◽

Alaa Hamed

Keyword(s):

Decision Making ◽

Decision Analysis ◽

Patient Preferences ◽

Good Practice ◽

Decision Makers ◽

Healthcare Decision ◽

Patient Centered ◽

Multi Criteria Decision Analysis ◽

Healthcare Decision Making ◽

Decision Making Processes

Objectives: Patient preferences should be a central consideration in healthcare decision making. However, stories of patients challenging regulatory and reimbursement decisions has led to questions on whether patient voices are being considered sufficiently during those decision making processes. This has led some to argue that it is necessary to quantify patient preferences before they can be adequately considered.Methods: This study considers the lessons from the use of multi-criteria decision analysis (MCDA) for efforts to quantify patient preferences. It defines MCDA and summarizes the benefits it can provide to decision makers, identifies examples of MCDAs that have involved patients, and summarizes good practice guidelines as they relate to quantifying patient preferences.Results: The guidance developed to support the use of MCDA in healthcare provide some useful considerations for the quantification of patient preferences, namely that researchers should give appropriate consideration to: the heterogeneity of patient preferences, and its relevance to decision makers; the cognitive challenges posed by different elicitation methods; and validity of the results they produce. Furthermore, it is important to consider how the relevance of these considerations varies with the decision being supported.Conclusions: The MCDA literature holds important lessons for how patient preferences should be quantified to support healthcare decision making.

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Integrating POLST into Palliative Care Guidelines: A Paradigm Shift in Advance Care Planning in Oncology

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2006.0069 ◽

2006 ◽

Vol 4 (8) ◽

pp. 819-829 ◽

Cited By ~ 19

Author(s):

Patricia A. Bomba ◽

Daniel Vermilyea

Keyword(s):

Advance Directives ◽

Advance Care Planning ◽

Patient Preferences ◽

Metastatic Cancer ◽

Health Care Team ◽

Care Planning ◽

Patient Centered ◽

Code Status ◽

Advance Care ◽

Patient Values

Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is an essential process that should begin at the time of diagnosis, if not already initiated, to ensure that all patient and family rights are preserved. Communicating effectively with the patient and family and having the patient designate a surrogate decision-maker are critical. Attention must be paid to resolving conflicts among patient values and preferences and those of family and the health care team. Patient-centered goals for care and expectations should be elicited at first assessment and reassessed frequently as conditions change. As a disease progresses, advance directives are rarely precise enough to predict all possible scenarios and outline guidance for care. Therefore, for patients with advanced metastatic cancer and a potential life expectancy of less than 1 year, converting patient-centered treatment goals into actionable medical orders while the patient maintains capacity is a more effective way to ensure that patient preferences are honored. Physician Orders for Life-Sustaining Treatment (POLST) and similar medical order forms provide explicit direction about resuscitation status (“code status”) if the patient is pulseless and apneic. POLST also includes directions about additional interventions the patient may or may not want. A decade of research in Oregon has proved that the POLST Paradigm Program more accurately conveys end-of-life preferences that are more likely to be followed by medical professionals than traditional advance directives alone.

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Patient education

ESC CardioMed ◽

10.1093/med/9780198784906.003.0532 ◽

2018 ◽

pp. 2249-2252

Author(s):

Deirdre A. Lane

Keyword(s):

Atrial Fibrillation ◽

Patient Education ◽

Patient Preferences ◽

Clinical Guidelines ◽

Treatment Options ◽

Informed Choice ◽

Educational Interventions ◽

Treatment Decisions ◽

Nice Guidelines ◽

To Receive

Contemporary international clinical guidelines recommend inclusion of patient preferences in treatment decisions regarding the management of atrial fibrillation (AF). Patient involvement in treatment decisions warrants at least a basic understanding of the condition and the treatment options available, yet the majority of patients with AF have little or no understanding of the nature and trajectory of the disease when they are first diagnosed, when treatment decisions invariably need to be taken. Making an informed choice about treatment requires the patient to receive education and information about AF, yet with the exception of the NICE guidelines on the management of AF, current clinical guidelines do not offer advice about what information a patient with AF needs (and wants) to know. This chapter offers guidance from consensus-based recommendations on the content of educational sessions for patients with AF, and provides examples of successful educational interventions and information on useful resources to help educate patients with AF about their condition and its treatment.

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Patient Preferences and Clinical Guidelines

JAMA ◽

10.1001/jama.1995.03520390079037 ◽

1995 ◽

Vol 273 (15) ◽

pp. 1219 ◽

Cited By ~ 25

Author(s):

Mark A. Hlatky

Keyword(s):

Patient Preferences ◽

Clinical Guidelines

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Evidence-Based Medicine in Otolaryngology Part XII: Assessing Patient Preferences

Otolaryngology ◽

10.1177/0194599820950723 ◽

2020 ◽

pp. 019459982095072

Author(s):

Matthew R. Naunheim ◽

Gregory W. Randolph ◽

Jennifer J. Shin

Keyword(s):

Clinical Practice ◽

Medical Care ◽

Patient Preferences ◽

Evidence Based Medicine ◽

Data Sources ◽

Evidence Based ◽

Patient Centered ◽

Rigorous Evaluation ◽

Current State ◽

Based Medicine

Objective To provide a contemporary resource to update clinicians and researchers on the current state of assessment of patient preferences. Data Sources Published studies and literature regarding patient preferences, evidence-based practice, and patient-centered management in otolaryngology. Review Methods Patients make choices based on both physician input and their own preferences. These preferences are informed by personal values and attitudes, and they ideally result from a deliberative evaluation of the risks, benefits, and other outcomes pertaining to medical care. To date, rigorous evaluation of patient preferences for otolaryngologic conditions has not been integrated into clinical practice or research. This installment of the “Evidence-Based Medicine in Otolaryngology” series focuses on formal assessment of patient preferences and the optimal methods to determine them. Conclusions Methods have been developed to optimize our understanding of patient preferences. Implications for Practice Understanding these patient preferences may help promote an evidence-based approach to the care of individual patients.

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