ReviewMeasuring patient-centered care: An updated systematic review of how studies define and report concordance between patients’ preferences and medical treatments
Introduction
Patient-centered care is defined as “healthcare that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions reflect patients’ wants, needs and preferences and that patients have the education and support they need to make decisions and participate in their own care” [1]. In 2001 the Institute of Medicine (IOM) identified patient-centered care as one of its six aims in its landmark Crossing the Quality Chasm report [1]. There have been global initiatives to assist patients and their providers in the decision-making process; among them the establishment of a Health Evidence Network (HEN) by the World Health Organization (WHO)/Europe [2], and the formation of the International Patient Decision Aid Standards Collaboration (IPDAS) [3]. However, while support has grown for the concept of patient-centered care, the ability to provide patient-centered care and to measure the extent to which it occurs has been traditionally hampered by gaps in the health care system [4], [5].
One method of assessing patient-centered care is through measuring decision quality, which has been defined as the extent to which treatments reflect the considered preferences of well-informed patients and are implemented [6], [7]. A key part of decision quality is that patients are well informed about the evidence on the clinically appropriate options and outcomes [8]. Another core element of decision quality is concerned with value concordance, or how well the treatment aligns with the patient's goals and preferences [9].
In 2008, two of the authors [EO and KS] conducted a systematic review to assess approaches used to calculate value concordance [6]. Specifically, value concordance was defined as the association between patients’ preferences concerning health outcomes and/or medical treatments, and treatment intention or treatment undergone [6]. Forty-nine relevant articles were identified, and these revealed a diverse picture in terms of how investigators conceptualized and measured the concordance between patients’ preferences and their treatment [6]. The variation in what and how to measure and report concordance limited the ability to generalize results and led to some recommendations regarding how “preferences” should be defined, how “choices” (treatment) should be defined, and appropriate methods for calculating the association between these concepts [6].
Since 2008, a number of initiatives have been undertaken to promote patient-centered care and there has been a growing emphasis on the ability to measure decision quality. In the U.S., the Patient Protection and Affordable Care Act recently established a new Center for Medicare and Medicaid Innovation (CMMI) and provided a significant funding stream for the Patient Centered Outcomes Research Institute (PCORI). Both of these initiatives include shared decision-making (SDM) among their key areas of focus [10]. In the U.K., SDM and the use of patient decision aids have been emphasized in government health policy [11], [12] and in legislation [13]. SDM is a collaborative process between patients and their providers whereby health care decisions are made together using both the best available scientific evidence and incorporation of patient preferences [14].
With a greater shift toward patient-centered care and the emergence of delivery system redesign initiatives, it is reasonable to reevaluate whether such efforts have led to care that reflects patients’ desires, and whether investigators have adopted consistent approaches to measure the extent to which this is happening. An update of the prior systematic review was therefore undertaken to evaluate the state of measurement of concordance, or the association between patients’ preferences and treatments.
Section snippets
Methods
The methods closely match what was done in the prior systematic review [6] and follow the guidelines promoted by Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRIMSA) [15]. MEDLINE and PsychINFO databases were searched with key terms such as: preferences, preference measures, attitude measures, or utility theory; and prediction, estimation, or predictability measurement; and decision making, decision theory, choice behavior, decision trees, decision support systems, or
Summary of included articles
The results of the search strategy are shown in Fig. 1. A total of 3635 articles were identified with the defined search criteria. These abstracts were reviewed and 187 were selected for a full-text review. One hundred twenty-four articles were excluded during full-text review for the following reasons: duplicate studies (n = 3), not medical or no medical decision being made (n = 25), or no data on one or more of the following: values, choices, or value concordance (n = 96). Of these 96 articles, 84
Discussion
The original systematic review, which spanned 40 years from 1967 through 2007, identified forty-nine relevant articles. This update, which assessed relevant articles from 2008 through 2012, a period of 5 years, identified nearly a third more articles (n = 63). Given the recent emphasis on patient-centered care and the rise of health care delivery system redesign initiatives, it is encouraging that more studies are reporting on the relationship between patients’ preferences and choices. Here, we
References (82)
- et al.
How to define and measure concordance between patients’ preferences and medical treatments: a systematic review of approaches and recommendations for standardization
Patient Educ Couns
(2010) - et al.
“I need to talk about it”: a qualitative analysis of trauma-exposed women's reasons for treatment choice
Behav Ther
(2008) - et al.
Predictors of risk tolerance among oral surgery patients
J Oral Maxillofac Surg
(2010) - et al.
Evaluation of an Internet-based disease trajectory decision tool for prostate cancer screening
Value Health
(2009) - et al.
Preferences versus practice: life-sustaining treatments in last months of life in long-term care
J Am Med Dir Assoc
(2010) - et al.
Audiovisual information affects informed choice and experience of information in antenatal Down syndrome screening – a randomized controlled trial
Patient Educ Couns
(2012) - et al.
Helping men make an informed decision about prostate cancer screening: a pilot study of telephone counseling
Patient Educ Couns
(2011) - et al.
Development of an instrument to measure parents’ preferences and goals for the treatment of attention deficit-hyperactivity disorder
Acad Pediatr
(2012) - et al.
Cross-sectional evaluation of parental decision making factors for vesicoureteral reflux management in children
J Urol
(2010) - et al.
Behind the myth – few women prefer caesarean section in the absence of medical or obstetrical factors
Midwifery
(2011)
Decision making about surgery for early-stage breast cancer
J Am Coll Surg
Helping women make choices about mammography screening: an online randomized trial of a decision aid for 40-year-old women
Patient Educ Couns
Evaluation of a natural health product decision aid: a tool for middle aged women considering menopausal symptom relief
Maturitas
Preferences of elderly cancer patients in their advance directives
Crit Rev Oncol Hematol
Colorectal cancer screening mode preferences among US veterans
Prev Med
Thrombolytic treatment for stroke: patient preferences for treatment, information, and involvement
J Stroke Cerebrovasc Dis
The multi-dimensional measure of informed choice: a validation study
Patient Educ Couns
Crossing the quality chasm: a new health system for the 21st century
Health Evidence Network
International Patient Decision Aid Standards (IPDAS) Collaboration
Patient-centered care: what does it take: Picker Institute and Commonwealth Fund
2012 National Healthcare Quality Report
Measuring decision quality: where we stand today
Informed Choice
Quality matters. Q&A: informing medical decisions. The Commonwealth Fund
Affordable Care Act
Equity and excellence: liberating the NHS, London
Shared decision making
Health and Social Care Act
What is shared decision-making?
Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement
Brit Med J
Do men make informed decisions about prostate cancer screening? Baseline results from the “take the wheel” trial
Med Decis Making
Randomzied trial of a video-based patient decision aid for bariatric surgery
Obesity (Silver Spring)
Decision analysis for epidural labor analgesia with Multiattribute Utility (MAU) model
Clin J Pain
Women's preference for cesarean delivery and differences between Taiwanese women undergoing different modes of delivery
BMC Health Serv Res
Preference for one or two hearing AIDS among adult patients
Ear Hear
Predictors of treatment preference for mandibular fracture
J Public Health Dent
Do decision biases predict bad decisions? Omission bias, naturalness bias, and influenza vaccination
Med Decis Making
The meaning of attention-deficit/hyperactivity disorder medication and parents’ initiation and continuity of treatment for their child
J Child Adolesc Psychopharmacol
The relationship between rejection sensitivity and compliant condom use
Arch Sex Behav
A pilot randomized controlled trial of a decision support tool to improve the quality of communication and decision-making in individuals with atrial fibrillation
J Am Geriatr Soc
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